The Christensen Family

I guess I can't wait........

2012-01-26T21:53:00.000-07:00

I have been telling myself as soon as I get some pictures, I will update the blog. Guess what? I haven't been taking many pictures. If I do... then they are always on my phone. So as I am sitting here tonight, I figured... it really can't wait. So here is an update in the fastest way possible.

Trevor - has been struggling in school more, but has had some really good days too. It is so hard to gauge with him when a bad day is going to come. All in all though, he hasn't missed any school due to meltdowns or non-illness related issues since before Christmas. I am really proud of him. So what if he won't do his full 20 minutes of reading every night.. or finish his spelling..... or always do his speech exercises? He is going to school without crying. Baby steps I tell ya... baby steps.

Jordan- is his usual crazy and wild boy. He is very social as always and can tell you so much about every kid at school.. no lie. He has his swarm of girls who seem to all love him and thank goodness he doesn't seem to care much (yet anyway). He is doing well in school and is learning all kinds of things. It seems like every day he has some tidbit of information that astounds me he knows. What a smarty pants he is!

Josh- well......where do I begin? In case you haven't already heard, he was officially diagnosed with autism in December. Life is a struggle most days with him. Thank goodness for the iPad, because it sure saves me some days. I am still working on getting a communication program set up on it for him, but he works on letters, colors ect. daily on it. He hasn't been eating as well and so has been back to 2-3 cans of formula through his G-tube again. His tummy issues are still come and go. The most concerning thing right now is a spot on his head. He started forming a ridge along one of the suture lines about 3 months ago. His skull most likely fused too early, causing alot of his problems. So for a ridge to randomly start forming at 4 and a half is really disturbing. We have an appt on the 29th of February to see a Cranio Surgeon. We hope to find out what is going on.

Kaitlyn- wow... this girl is on the move! She began walking 3 weeks ago and hasn't looked back since! She wears her braces to keep her feet better positioned and her balance and walking is so much better with them on. She is quite bowlegged... so we have an appt next week with an Orthopedics doctor to see if we can get a handle on it now. It's still questionable if it is because of sensory issues, or something neurological. Her Physical Therapist pushed for us to get this done as soon as possible. But the greatest news?? She is off oxygen... and maybe just maybe it is for good!! Wahoo!!!!! Her Ped had an epiphany over christmas and wondered if she just doesnt' have some severe asthma. He thinks that maybe her sats would drop here and there because she wasn't breathing in deep enough because of asthma and instead of doing some meds for asthma...we just did more oxygen. She started on an oral med for asthma as well as a nebulizer treatment and so far so good!!! She is doing awesome! Since all 3 boys have varying degrees of asthma... I don't know why I didn't think of it. But oh well... the end result is not hauling an oxygen tank around everywhere and she is happier too.

So I guess that is about everything in a nutshell. I really shouldn't let this much time pass. I need to get all my christmas stuff downloaded so I can actually post about it. Sorry.... I have been busy!

Scott has a blog

2012-01-03T09:18:00.000-07:00

Scott decided to start his own blog about a Dad's point of view when it comes to raising kids with Special Needs. I hope you will all check it out and follow him. He is not normally a person to talk about how he feels so I was surprised when he decided to do it. I am really glad he is though. It helps to connect with other people during this journey of life. He did say he is going to be open and candid about it. Just so you know:)

www.scmc0310.blogspot.com

Enjoy!!!!

Update on the iPad

2011-12-23T22:37:00.002-07:00

Just thought I would do a quick update on how things are going with the iPad.

Josh LOVES it. He is doing so awesome with it and I am so happy!!!!

(sorry for the quality of pictures and video. I really need to stop using my phone and use the actual camera!)

An amazing Christmas Miracle!!!

2011-12-17T14:18:00.001-07:00

JOSH GOT AN iPAD!!!!

I have been on such a roller coast of emotions this Christmas Season... one that has had me laughing one moment and crying another.

On tuesday of this week a true miracle happened. No.. it wasn't Scott's Birthday, although it was a nice birthday surprise from him. (love you, Sweetie).

My amazing friend Alison Duffy (she deserves so much for doing this...if you know her make sure to tell her how special she is!) decided that she was going to do some sort of a fundraiser to get Josh an iPad. She understands how much it could help him, and how much he has been through his entire life. So she was going to set up a website to have people donate money towards it. On tuesday morning she called a friend of hers to find out if she had an suggestions or could help her word things on the blog she was going to create. Her dear friend told her to wait a little bit, she was going to make some phone calls before Alison got going on this. In less than an hour she called Alison and told her she had an iPad for Josh. Alison was speechless and really shocked. She called me to tell me and I just kept saying..holy cow...wow... holy cow... wow..... pinch me please..I didn't even know what to say! What an amazing surprise. At first it was unclear how this came about, but now I have a name of an amazing couple whom I of course have never met, who bought this iPad for Josh.

This sweet couple have no idea how they have just changed a life. Already... 4 days later Josh is picking up on some of the apps we have gotten on there and I can't believe how good he is doing already. We are still in the process of getting a communication program up and running on there, but mostly it has been due to lack of time. I also have been trying to get other mom's of special needs kids to give advice on apps and ect. It is such a busy time of year that it's been hard to get with the people I need. But we have it up and going for him for some basic stuff and he LOVES it.

I am still in shock that someone who has never met me, my son or my family would give such an amazing gift. It truly is a Christmas Miracle!

Thank you Alison and our Donor! We love you!

Another Official Diagnosis

2011-12-11T21:54:00.001-07:00

This past Wednesday, December 7th, Josh had another evaluation. This was with a psychologist through Children With Special Health Care Needs (CSHCN). We have been waiting for a couple months for this appointment. We were having Josh evaluated for Autism or any other behavioral disorder. His Genetics Doc really pushed for this after our last appointment. 6 weeks ago I filled out several questionnaires and evaluations for Josh and mailed them to Salt Lake to be scored so they would be ready for this appointment. Josh's preschool teacher also did the same thing. I was really nervous that we would not be able to leave this eval with our diagnosis. You never know how Josh is going to be at any given time.

But I was worried for nothing. This appointment went so well I could not believe it. Josh cooperated PERFECTLY. He was 100% himself so she got an extremely accurate eval of him. He did not throw any meltdowns during the process so we were able to move through and get it done in about 2 hours. (He did throw a meltdown as we were leaving with head banging and everything so she did get to see that too..)

So....what was the outcome? Autism.

I was surprised where he scored though. In the official eval the doctor did there is two categories: Autism and Autism Spectrum Disorder. When we first met her and began the eval she thought he would probably be on the Autism Spectrum Disorder category. But as the eval went on and she began to score it at the end, he fell in the Autism category instead.

She was a wonderful doctor and I actually learned several things in that 2 1/2 hours about Autism. I am so glad to have her join our team of doctors for Josh. I can see that she is very knowledgeable and wants to help as much as possible.

So now the hard work begins.

Josh has had no intervention for Autism at all. I am currently battling the school district about his speech problems. As some of you may know.... the speech therapist at his preschool and I don't see eye to eye at all. I don't think she really wants to even try to work with Josh. I recently (finally) had Josh evaluated with the augmentative team through the district for a communication device of some sort. Their conclusion was that he does not need anything and instead Scott and I need to learn about PECS... which is comical. We have been doing PECS for over a year with him already. I did them with Trevor. Believe me.... I know how to do PECS. They aren't helping. The funny thing is... every single doctor, therapist ect that we see for Josh is STRESSING that he needs something to help him. Pretty much everyone is telling us that an iPad is the way to go. I am so tired of hearing this! I know how much he needs an iPad.... we just can't afford to get him one.

I am feeling alot of relief and anxiety about Josh's diagnosis. I feel relief because now we know. Someone who is an expert was able to tell me 'YES your child had Autism'. I have been on the fence about this for awhile. But now the anxiety is setting in. I know that pretty much the school system is failing Josh. I know that he needs some very specific programs and interventions to help him succeed. I am so sad because I don't really have anywhere that is specific to Autism to take him to now. He is too old for the preschool programs and that is all we have around here. I feel the weight of the world knowing that I am going most likely be left to figure out how to do this. I need to take on being his therapist, interventionalist, ect. I feel the weight of all this on my shoulders and I don't know how I am going to do this. It is going to take alot of research and time to figure out what to do to help him. He is so far behind academically. He does not know colors, numbers, letters, shapes, ect. Even without him being able to speak... if not for the autism he would be able to learn these things. But he is so far behind it overwhelms me.

So as soon as the holidays are over... I am going to begin figuring out what to do. I will do what it will take to help him learn and grow. It will take more time than I have been able to spend with him... but somehow or another I will find the time. I know I will. He is such a sweet boy that has had more struggles in his short 4 1/2 years that many people will have in a lifetime. But I will be his advocate and I will do what it takes.

In the meantime... here is a couple pictures of my sweet boy. I don't know why he happened to have his coat on in both pictures.....

And speaking of Autism.... here is my two special boys. These two have always had a bond that is different than anything I have ever seen. Isn't that interesting?

PH Probe Test and Results

2011-12-07T00:28:00.001-07:00

This past Thursday and Friday was Kaitlyn's PH Probe test down at Primary Children's. I was dreading spending two days at the hospital with nothing to do but sit in a small hospital room. The day we had to check in was, unfortunately, the day of the massive wind storm that hit the Wasatch Front and caused millions of dollars of damage. I was worried about even getting down there. I made it OK and we got all settled in.

This is what the probe looks like. It is as small as an NG tube and went down her nose and into her esophagus. It measured the PH levels in two different places. We did have to have an x-ray to make sure the probe was in the right place. Of course within about 10 minutes of getting back into our room, she accidentally pulled the probe out. So it had to be placed a second time. She was thrilled. So was I.

This is the monitor that I got to carry around with me. Lovely. It showed the acid levels in both sensors. I also had to change the position on the monitor every time she laid down or was sitting. I also had to hit a couple different buttons when I saw her coughing, gagging or puking. It was a little more involved than I was thinking. Sigh....

To pass the time while there for 26 hours, we took many walks in a wagon. Kaitlyn really loved walking to the South Lobby to see this huge Train set. She would sit and watch the train go around and around forever.

Her packed into the wagon with lot's of pillows and blankets since she still doesn't sit on her bottom by herself. Then we add the oxygen and monitors and a toy... and it was quite the production. But she was happy and it made it worth it.

By the time we left friday night.... we were both wiped out. Me more than her since I didn't ever fall asleep there. I was up for 36 hours straight. It was just not fun! Kaitlyn fell asleep right before we were discharged and didn't even move while I loaded her in the stroller. She is sitting straight up in this picture and sound asleep. Poor baby!

Since we just got done on friday, I was surprised to get a call from Dr. O'Gorman with the results today!!! I probably shouldn't be surprised since I sat with her in the hospital cafe on thursday night chatting with her. She knew I was nervous about this test:)

Anyway, it was good news! Well depending on how you look at it. Basically the test came back borderline. Molly (Dr. O'Gorman... we call her Molly though!) said that things could go either way. She knows how I DON'T want to do surgery to fix Kaitlyn's Reflux unless there is NO other options. So as long as I abide by some restrictions.. she let me decide if we go forth with a meeting with the surgeon, or re-evaluate in 6 months as long as we do the precautions she wants. Of course I picked the re-evaluate in 6 months.

So what does this mean now?

Kaitlyn will for sure continue to sleep in her swing because under no circumstances can she lay down flat to sleep. I will have to watch what she eats so she doesn't get more than one acidic food per meal. She will tweak her meds a little and we need to make every single effort to do her meds on time, every single day and not miss anything. If she shows anymore symptoms we will revisit this sooner than 6 months.

So.... this was the best news. We know she has reflux... we know it's not getting better. But to find out that we can buy some more time to hopefully let her tone get a little better is the best news possible. I feel like doing a happy dance!!!!

The only other significant thing that they found was some tachycardia (high heart rate) that they want me to call her Cardiologist about. Her sats dropped a bit on a lower rate of oxygen while she was asleep, but nothing significant. But we do know (as if I hadn't been monitoring her at home) that she needs to continue on her oxygen.

Plus as of today she has a slightly crappy sounding upper airway. Super. We will be continuing Winter Isolation.

Doctors, Doctors, Doctors!!!!

2011-11-10T11:43:00.001-07:00

I swear if I counted up the hours I have spent at the doctor and pharmacy the last month, it would easily equal a part time job!!!!!!

Since I am a little slow at getting updates on here, this will be a good catch up post. Josh hasn't had many doctor appts, but getting all of his meds switched from wal-mart and Shopko to WalGreens has sure taken a TON of time. Very worth it, but still very time consuming.

The only appt Josh has had recently was yesterday at PCMC. He had his Dysphasia, or Feeding Clinic bi-annual appointment. And to tell you the truth I am still reeling from all that has come from that.

If there is one thing that has helped me survive all the medical issues going on in my house, it's the fact that Josh is doing well. His last appt in April, he was doing spectacular. He FINALLY was exactly where they wanted him for weight to height ratio, and BMI, ect. I guess that probably gave me a false sense of security with him and I have not been as vigilant as I usually am. He still had his bloated tummy issues, but Dr. O'Gorman said we would give him another 6 months to see how things were going. That was the only concern.

So much to my surprise, Josh has taken a dive in his health and I was a little shocked. He has lost a pound since his appt in april, and has not grown at all, not even a millimeter since that appt as well. Dr. O'Gorman is more worried about the lack of growth than the weight loss. It means he is seriously lacking calories and lack of growth is really worrisome. His tummy bloating is not any better, in fact it has been a tad worse. She thinks that milk is still the problem with his motility and bloating. She said she is pretty sure his intestines are swollen inside and making everything worse. Since we have run every blood test, he has been scoped, had biopsy's, ect...there really isn't a reason to repeat any of that. But we are once again taking milk away. He has been back on milk for over a year, so we can't remember what his bloating looked like before that. So it means another change in formula, as well as adding calories and water. Pretty much Josh is back on his pump 24/7 again. I will only let him off of it for school. Let me tell you how excited I am about that. :(

So.... we will have to go back in 3 months. It has been 2 years since we had to do every 3 month appts. Let's hope it doesn't become a permanent thing.

Here are some pictures of our funny boy. Sorry for the quality. I took them on my phone so they aren't the best. But it's all I take these days....

I woke up to this one morning. How can you not laugh at this boy?

Now for my baby girl. Wow had Kaitlyn had a rough few weeks. From catching a cold and ending up back on oxygen again, to her GI appt and 5 visits to her ped in two weeks, she has about had it. I wish things were easier on her.

We did one more trial run on Amoxicillin since she couldn't get over her cold. She is definitely allergic to it. Now we know. She also got yeast infection that continued to get worse even with cream. She woke up with thrush in her mouth 4 days later. We were back to the Dr. AGAIN and got a new cream and oral meds for the thrush and yeast infection. Due to a mix up with insurance it took over 5 days to get the meds. She was miserable and her mouth was sore for days. It was not fun. She had a GI appt this week as well. She has maintained herself on the growth curve, but she didn't increase... so she is still not where she has been all along until her drop off last appt. She is scheduled for a PH Probe test on Dec 1-2. It's a 23 hour test that measures her reflux. If it comes back moderate enough, we will then meet with a surgeon about whether or not she is a candidate for surgery with her low tone. I am choosing to not think about that yet since it scares the crap out of me. The Nissen is major surgery. So I would rather not think about it. We also got the official NO on milk and soy for her. So thank goodness with her Feeding delay we are still on single fruits and veggies. We aren't going to make any changes until we get the results back from her PH Probe. And then she also had a sedated MRI scheduled for next week. This girl is keeping me so busy!!!!

As far as therapy goes and how she is doing...... she is eating the stage 2 pureed foods and doing well finally. She doesn't gag anymore and swallows nicely. We aren't going to do anything at this point until we can get some results back. She will continue to get her full 5 bottles a day of formula with not weaning anytime soon. She is walking slowly around furniture but not taking steps forward at all. She can kneel, but not sit flat on her bottom. She is a tad more stable, but still has some low tone issues really causing problems with her trunk control. We will just keep on keeping on with her.

And here is a couple pictures of her as well. I am not sure why I have so many eating pictures, but oh well....LOL!

(PS... Is anyone else having problems with Blogger?)

So it's going to be THIS way.....

2011-10-12T23:00:00.000-06:00

So I am finally getting around to updating on our bazillion doctor appointments we had going on the last 3 weeks. It has been a whirlwind of stress, information and just plain crazy/busy.

First appt I am going to update on is Kaitlyn's neurology appt. She had that two weeks ago. She was diagnosed with Hypotonia. That means Low Tone. She isn't the worst case out there, but enough to cause some problems with her development. As of today she still cannot sit up on her bottom, but can kneel, crawl, pull to a stand. Frustrating, huh? Yep. But her tone issues can actually explain all of her problems. Kids with Low Tone have weak muscles basically. So it can be the reason she has reflux so bad... the muscle used to close off and prevent stuff from coming up isn't working right. Her bowels have problems because the muscles aren't able to effectively push things through her system. And her oxygen issues can be her lungs not working completely as they should and her oxygenation isn't as good as it should be. Or something to that affect. So we have had some blood work done and are waiting for results. She also is going to have an MRI. The doctor wants to see if they can find out why she has low tone. He warned that they don't always find a reason why. But we hope to get some answers soon. In the meantime we added physical therapy to help her with the strength and she has also been fitted for some braces for her feet to help with her over-pronation. (her feet turning all the way out, and curling under so she basically stands on top of her big toe). So we will see what we find out.

Kaitlyn also had another GI appt last week. Her doctor is not too pleased with what she saw. Kaitlyn took a dive on the chart for her weight. A pretty significant drop. She not only didn't gain, or even maintain her weight from her appt on August 4th, but lost 4 oz. So we are going to get more aggressive with the options. We are looking at doing a PH Probe test (which means an overnight stay in the hospital) to measure her acid levels and if she is aspirating. Depending on that and how the next 8-10 weeks go, we might be looking at surgery for her. Boo. Not thrilled about that. So I take her back on November 7th. I am a tad nervous about it.

And if all this wasn't enough..... she caught a cold last week and is back on oxygen. Not only back... but on higher amounts than she has been on in months. Sad! I took her back to the doctor today and he is pretty sure her tone issues are playing a big part in what is going on. Her cold is mild enough she should be fine. But he said her lungs just aren't doing a good enough job working to handle the extra stress the cold has and so her sats dropped. So we are looking at probably another 3 weeks on 24/7 oxygen and then we will leave her on it for nighttime. It is looking likely she will have to continue on the oxygen during the night through the winter and every time she gets sick we are looking at going back on the oxygen 24/7. He is really concerned about her and the flu season, but even more so because of RSV season. He scared the crap out of me today. So........ we are officially going into isolation and seclusion time until next spring. Yay. So excited. At this point I just want to make it through the winter without any major issues. But Kaitlyn is handling the oxygen just fine. She just goes and goes and it drags behind her. Poor girl.

Now for Josh. What do I say about my Josh? He is having a lot of struggles right now and thankfully we are in the process of doing as much as we can for him. He saw the Genetics doctor, Dr. Rope, last week. It was a great appointment. He was able to get another good look at him before he decided what genetic tests to order. I am waiting to hear back from them that insurance gave the green light. Dr. Rope spent well over an hour with me going over every single tiny thing about Josh and he once again told me how complex Josh is. But one thing that we are going to do is get Josh screened for Autism. I will do a whole other post about how and why this has came about, but I won't get into it today. Just know that there is a lot of things going on I have been pretty closed off about. But I am ready to face everything with all of my kids now... nothing is scaring me too much anymore. But Josh does have medical problems that don't have anything to do with autism. So there is much to be learned about him still. Hopefully in the next 3-4 months we get some answers.

If you are still reading... I am really impressed!!! I haven't been taking any pictures with my camera... I always use my phone now. So I finally decided to just post a couple pictures from my phone of Josh and Kaitlyn I took in the last couple days. Both pictures about sum up how these kids feel about all that is going on right now........:)

A peak into my world....

2011-10-03T14:39:00.000-06:00

I am doing this post for me mostly.... to document what I do on a daily basis. Also if anyone out there wants to know if you are alone in this special needs world, I hope it helps you to understand you are NEVER alone.

But first I have to admit something here. I have to make this official. I know it probably means nothing to anyone else, but believe it or not, I have struggled with this and coming to accept what it means.

I am a mother of three special needs children. There. I said it. Now we can move on:)

I am not going to point out minute by minute of what I do, but blocks of time during the day.

I usually get up on school days around 8:30. I know... I am spoiled. I have an amazing husband who gets up and gets the three boys off to school for me. I only sleep this late because I am the one who is up with Josh and Kaitlyn during the night. Some nights I am lucky and only get up like 3-4 times a night. The reasons I get up? For Kaitlyn it is because her reflux bugs her and night and she hurts, or she actually spits up and cries. Also there has been some teething going on. I get up with Josh for a number of reasons. Mostly it is his feeding pump beeping during the night. Sometimes it is because he is just wide awake and won't sleep. Sometimes it is tummy aches. A bad night is when they are both up and needing something together, or trade off and as soon as one is done and settled and I climb back into bed, the other wakes up. Those nights I get around 4 hours of sleep, give or take. Not fun. So you can see why I am being spoiled to get to sleep until 8:30 these days.

Now that we covered that. I don't have to do Josh's morning meds or get him ready for school since Scott does that now. I have always done it in the past though until Kaitlyn was born. Now Scott has taken over. So now when I get up it is just Kaitlyn I have to do. I have morning meds for her now, and then feed her a bottle. Then we either have therapy for her, or shopping, or on a good day we can just stay home. I usually use this time while everyone else is gone to work on the things for therapy we need to do daily. Leg stretches, practice sitting, standing properly, ect. Around 10:30 she goes down for a nap. I then get a snack ready for Josh to eat since he gets home from preschool around 10:45. Once he gets home...it's like a tornado hits. He is usually hyperactive, but also very (how do I put this nicely?) difficult. He wants to eat, but nine times out of ten what I have ready is not what he will eat and it usually results in a meltdown trying to figure out what he does want. I usually end up putting him in his room to calm down since he will bang his head or hit/bite me out of frustration. When I finally get him something he is willing to eat, he will take one or two bites and get down. I almost daily then get a meltdown over him wanting a specific toy and me not figuring it out. I am most days just tired and frustrated by now. I give him his noon meds anywhere from 11:45-12:00 and get him down for a nap. Usually around 12:30 Kaitlyn is getting up from her nap. She usually is happy and plays for a bit on the floor. Then we do her mid-day meds and do a bottle. She doesn't usually want solids at this point and some days I don't even push it. (bad mommy). I spend this time frame getting dinner either prepped or in the crock pot ect. I try to work on some more therapy things with Kaitlyn and make sure everything is ready for the after school rush. I pick up the kids (usually waking Josh to go and so he is such a happy boy and Kaitlyn is tired by this point so she isn't happy either) and we come home. As soon as come home I put Kaitlyn down for her second nap and then do snacks for all three boys while I go through planners and homework folders. I give Josh is 4pm meds and try to get dinner finished up and deal with Josh's ever present meltdowns over wanting something I can't figure out. After a brief time of play, we start homework for Trevor and Jordan. Jordan is always easy and very pleasant to do homework with and so he always goes first. Trevor is a different story. It takes alot more focus and one on one to get him to sit down. I am usually hoping Kaitlyn is still asleep and Josh will be good for at least a few minutes so Trevor doesn't get so mad and have his own meltdown. (most days lately I am not accomplishing that....sigh). Once homework is done, or before:)... Kaitlyn gets woke up from Josh's screaming. It's awesome. She is ready for a bottle and some days I talk Trevor or Jordan into holding/feeding her, but that doesn't happen often. By this time it is usually 5:45 or so and I realize I need to have all homework signed, in backpacks and dinner going so we can eat when Scott gets home at 6:15. He always walks in the door to pure chaos these days. We sit down at the table to eat dinner as soon as he gets home and then we begin the nightly fight with Josh about sitting at the table to eat. He does not like to sit down and eat. He takes some one on one at dinner time so he sits in between Scott and I. I do have Kaitlyn on the other side of me that I am trying to feed her solids to while I eat (left handed these days). We have a family ritual that we each get to say one good, bad and funny thing that happened to us during the day. Trevor gets frustrated very easily because usually I am distracted with Josh and Kaitlyn and he feels that all the attention should be on him. It's the autism ODD coming out in him. He doesn't tolerate us not following the nightly plan. So we have to try to make it all work. Since I feed Kaitlyn I take longer to eat so Scott usually gets done and gets Josh in the tub and does some of the dishes while I finish up. When I am done I get Kaitlyn in the bath with Josh and ready for bed in her jammies. I put her in the jumper while Scott gets Josh out and begins the process of re-taping his G-tube up and doing his night meds (takes about 15 min). I will try to get dinner dishes finished and the table wiped off during this time. Then we deal with Josh's frustration and meltdowns over who knows what.. until it is time for bed. He gets hooked up to water with the feeding pump and we finally have him down. In the meantime we are also dealing with Trevor and his meltdowns over nightly chores. It is soooo much fun. After Josh goes to bed (finally!), it is time to do the nightly list. That includes doing Trevor's lunch for school, making sure if library books, or whatever is in backpacks on the correct nights. Josh's daily meds (there are 13) need to be done and ready for the next day, bottles washed and Kaitlyn's meds now have to be ready in her bins. I can't do this until she has had her night meds and last bottle of the day though. We make sure Trevor gets his meds and tackle bedtime with him. He does not always go to bed willingly. We will leave it at that. When the three boys are in bed and it's just Kaitlyn, I finish cleaning up the toys, ect and let her roam for a bit. I try to get her in bed by 9... but usually it's 10 when we finally accomplish that. I do a quick run through and make sure everything for Josh is ready for the next day (meds, clothes, formula) and make a morning bottle for Kaitlyn and finally I can sit down.

Of course days that either Josh or Kaitlyn have appt down at Primary Children's my schedule gets messed up and I have to deal with the fallout of that with Trevor. I stick to this schedule consistently unless there is something like pack meeting ect that makes it harder. Then I just know Trevor will be off his game and meltdowns are likely.

Right now between Trevor, Josh and Kaitlyn, we have 21 prescriptions to deal with on a daily basis. It gets tricky, but I have a good system and rarely does anything get forgotten. It has taken me a long time to get to this point. I do wish I had some better organization skills...maybe I could make it even easier.

Now you have had a glimpse into my world... do you want to trade? LOL~!

Autism

2011-09-26T23:05:00.000-06:00

So I was getting ready to do a post about the latest news for Kaitlyn and Josh. They have both had a couple appointments recently and I wanted to get the news out. But on one hand, all my pictures I wanted to post got deleted:( I was so sad! And today the subject of autism took center stage in our house.

Autism. Some days I really hate that word. It can mean a stereotype, a label, a definition of what your child can or cannot do. But days like today I don't mind it. It gives me a word for what went on in our house this morning. It gave me something to say when I didn't want to come right out and tell people who asked that I had a crappy day that I never wish to repeat. I refer to these days as 'autism' days. And anyone with a child on the Autism Spectrum can attest to what I mean.

The day for me started at 7:45 am (OK if you want to know the truth... it started at 4:30am when I spent almost 2 hours... for the second time last night....... with a fussy, teething Kaitlyn). Scott was up getting the kids off to school like every other morning. I woke up to Trevor running and screaming into my room and jumping on me -hard-.... that he had therapy and was not going to school. I thought quickly about what day and time it was and then informed him that he did not have therapy today. What a wrong thing to say!!! A meltdown that was........ epic..... resulted. Both Scott and I got hit and bit at one point. I actually took the brunt of it since Scott ended up leaving or Jordan would have been late for school and he would be late for work. I quickly realize that I can't physically drag him to school.. especially since I had Kaitlyn to deal with. I left him in our living room where he bounced between the couch and floor for almost 2 hours solid... screaming he needed to go to therapy. I still can't remember what I could have said that made him think he had therapy today.

He finally did calm down and spent the day in his room. He was supposed to be cleaning it, but he mostly just got distracted by everything in there and didn't make any cleaning headway. It was OK because he really needed hours to get in a better place emotionally.

So I call these days 'autism' days and leave it at that. So if you ever ask me how I am doing and I say I am having an 'autism' day.... maybe you can get a little bit of an idea of what is going on.

I love Trevor. I am so proud of how far he has come. I want more than anything for him to be OK and to be able to make his way in this world that he has had to adapt to. I really wish I understood why certain things can upset him so much and what I can do to help. I am making progress and I will continue to do so. But some days... Autism just plain kicks my butt!

Where I have been emotionally....

2011-09-16T13:44:00.000-06:00

I am back.

I know that you won't understand why I am saying this because I never went anywhere. I have never shared what was going on with me to a single person until now.

I haven't been in the best of places emotionally for the last while. And since summer hit, it really went downhill.

But I am back. I can't tell you what specifically kicked me back into gear, it was probably more of a sequence of things.

The two biggest events that has gotten me back is school starting and a new calling. School starting is because I now have times during the day of absolute quiet when the younger two are sleeping and the older boys are in school. I can think, I can relax and I can reflect. I needed that. I didn't know how much I needed that until now.

And the second thing was getting a new calling last week. I was called to be a Relief Society Instructor in my ward. I have never taught Relief Society and I am so out of my element here that it is almost comical. But some good things have come. I had an honest talk with my bishop about my concerns being 'unavailable' during that time for Trevor and Josh. You see, church is NOT easy for us with the kids. So my Bishop is calling two people to be 'helpers' for Trevor and Josh. Each of them will get their own person who will be with them during the time Scott and I can't be and their sole purpose is to help them deal with the issues they have. I can't tell you how much that took off my shoulders to have this happen. I might actually get to listen and enjoy church for the first time since having Trevor. I think seeing a solution finally to the stress I have about church and those two has done tremendous good for me.

I feel like I have been in this horribly dark place and I can't get out. I love my kids. I enjoy them. But having special needs kids is very draining on an emotional level. I know all kids are difficult at times and so some people may have looked at me from a different point of view. But I do have one 'typical' child and let me tell you... he is easier. He is not easy.... but easier. Trevor and Josh especially are HARD. I don't generally like to talk or even dwell on the challenges we have with those two, but I think things need to change.

So.... from now on, for my sake more than anything, I am going to be honest. I think keeping everything inside like I have for so long has been my biggest downfall. I don't think I am a negative person, but I always felt like people would think of me that way if I was honest and told them how I was really doing or feeling on any particular day.

I want those moms of special needs kids who read my blog to know that what they might be feeling is normal. I want them to know that life is hard, but these kids are so amazing and wonderful and it's OK to not feel hunky-dory every single minute. I sure don't. But I thought I had to tell people that so they wouldn't think of my as a bad parent or a failure.

I have come to the conclusion that I need to be an open book. I need to be OK with being upset, angry or frustrated along with happy and excited about new things happening with my kids. If I can help one person then I will be obtaining my goal.

I love my kids. I love them despite the challenges they face and the challenges their everyday care brings to our family. I love watching them learn new things that were hard for them. I love what they have taught me.

So I want anyone and everyone who reads this blog to know that I want to reach out, I want to help others, I want to talk about those hard things, and I want to express myself no matter what I am feeling on that day.

So I am back.

I have a rough road ahead still working on what I need to do to be in a good place emotionally. But I know I have made it through the hardest part.... admitting that I have NOT been ok and doing something about it.

Please comment and ask questions if you have them. Please let me know if you see something you think would help make me a better person. Please try to understand.

The awesome school update

2011-08-30T23:50:00.000-06:00

School started. It was epic. No really.....after the summer we had, I was extremely nervous about this year. And it is going to be OK!!!!!!!

So hang on tight, get comfortable (get a drink and a snack) since this might take awhile.

Jordan is in 2nd grade. He has Mrs. Rounds, who Trevor had two years ago..... the teacher that made my decision to move Trevor to a new school. I was worried about it. But it has turned out OK and Jordan seems to like her alot. I have high hopes that things will be much easier this school year for her. He has become quite the social butterfly and spends recess getting chased by girls. So... nothing is new for him really :-)

Josh is settled into preschool as well. He has his same teacher, but he is at a brand new facility they built last school year. It is sooooo nice and I know will be great. He was really apprehensive at first, but I talked to his teacher today and he is settling in well. Yea for Josh!

Now for Trevor. He has been my high stressor for school this year. I felt really good about how the IEP meeting went the last week of school last year. He qualified for more services than he ever has, and it was good to get some accurate testing. He does have several problem areas, but as usual they are all consistent with common areas of autism. I had many concerns about this year and was quite nervous that the school would not follow through with everything we talked about at the end of last year. I had a meeting with his teacher and the resource head, and aids last friday. I am so incredibly pleased with everything. Trevor has an amazing teacher who he really loves. He came home from school the first day saying he loved his teacher. Trevor has NEVER said that about a teacher. So I knew this was a good sign. But at this meeting last friday I really got to sit down and talk to her about all the little problems we have, what he needs, and what we need to do to make this year successful. One of the things we talked about was him using this:

It's called a Neo. He can type instead of having to do so much handwriting. He really struggles from a fine motor standpoint when alot of writing is involved. Last year we talked about this being one of the anxiety issues that was pushing him over the edge. He used it yesterday and today and seemed so much happier in general about his school work.

His teacher also created a break pass for him. They broke the day up into 3 sections... like from beginning to first recess... then that to after lunch... and afternoon or something like that. He has a break pass and he can use it once in each section of the day. We hope that helps with him needing some time to recharge when he has been over-stimulated.

It is also written in his IEP that homework does not count against him. This year our big push is going to be reading. He is not reading at grade level anymore, and his language comprehension is really not at grade level. So we are going to have his 20 min of reading be the only thing he has to do everynight. And hopefully it will only take an hour to get that 20 min. He will occasionally bring home work he didn't finish during class, but if it doesn't get done it won't be a big deal. This is also one of the biggest stresses I had. Last year was HORRENDOUS when it came to homework. I got hit and bit so much fighting with Trevor over all that and I didn't think I could do that again. I am so glad the school is on board with making our family life easier too.

So that is how things are going with school. Now that the kids are in and I can breathe again, I am starting my new focus......speech with Josh. I know with his Speech Apraxia it can be a long time before he will be able to talk normal (if ever). He has been doing well on the PECS system and of course he still signs, but we are still at a frustration/boiling point. I know what I really want to do, but it's just not a possibility. I have heard/read so much about the iPad apps and what they are doing for special needs kids. I would LOVE to have something that did everything we need, and be portable and small. I was really hoping when the iPad 2 came out the original iPad would go down in price... but it is still way over what we can ever afford with our medical bills, ect. So I have been spending the entire day today trying to find out how I can kind of make my iTouch work. It is really small and not ideal, but I am going to see what I can do about adding it to the PECS binder and making it so I can take everything with me (everytime I go anywhere. yea). We really need him on a device by mid year this year so he can be ready to go for Kindergarten. I am going to get with the speech therapist (she is new this year) and see what we can do. I know that he might be able to qualify for an iPad at school, but it's a long shot and something he can't bring home, or take with him next year since it will belong to the preschool. So we'll see what I can pull out for this year.

iTouch... I would appreciate it so much!!!!! Thanks for sticking with me and listening to my ramblings. :-)

Cardiology, GI and new members of our family

2011-08-17T16:22:00.000-06:00

Once again it has been a really long time since I have blogged. I always have good intentions to keep this updated, but lately I have been struggling with coming to terms with some of the things going on with the kids, that I just keep putting off talking about it. But I think I am doing OK, and I know there has been alot of questions about how things are going.

So we will update on the kids and throw some pictures in here as well.

Trevor is doing alright. It's been a long summer with not near the amount of structure that we need, so school starting is really something we need. He has had some fun scout activities and seemed to enjoy things for the most part.

Jordan is doing great as well (sorry no pictures of him... don't ask :) LOL)

He has had many playdates this summer with his friends from school, had done countless amount of 'projects' and crafts. He is really excited for school to start.

Josh is chugging along. He had the stomach flu a couple weeks ago and it really did a number on him. We all got the flu, but he has taken the longest to recover. His stomach took quite awhile to be able to hold anything, even water. He is still not back to where he was before, but he is making progress. He is having an MRI on friday so I know that things will be thrown off again so I am kinda just waiting for that to be over with and then see where we stand.

Now for the sweet princess. She is so much fun. She loves everyone and smiles so easily. She is very amused with the boys and especially Jordan can really make her laugh.

She has had GI and Cardiology appts recently. She also had her evaluation for Occupational Therapy and has had her first session of that as well.

So as far as GI is concerned... she is stable. The formula change we did in May helped with tummy aches, but did nothing for the reflux and diarrhea. The doctor said that we will leave her on it since it did help with something, but since it did nothing for what we actually changed her for, it means this is not a food allery issue. She dropped 5% on the growth chart even though she gained weight. So she is concerned about that from a GI point, even though she is stable right now. She had a upper GI done and it came back with normal anatomy and moderate/severe reflux. She had some abdomen x-rays done and things look good from an anatomy point there too. Really the next step is a PH probe. That requires a 24hr hospital stay so I am not looking forward to that. She is meeting some criteria for a surgical procedure called the Nissen to help with the reflux. Thank goodness we still have time to see if she will get better on her own. We still don't have any answers for the diarrhea and we will see what the next step is at her next GI appt/weight check on Sept 29th.

Now for Cardiology. I had to take her to a cardiologist because she suddenly started having some hight and low heart rates while sleeping. Since this is new territory for me I had no idea what to expect. She had full workup done with several tests. The Dr wasn't too concerned since she doesn't have any heart defects. (Halelujah!) He thought it could either be an immature central nervous system that needs more time to develop, or it could just be how her heart is. He wanted to have her wear a Holter Monitor to double check some things and to see what was going on. So we did the monitor and I mailed it back. I honestly felt really relieved after that appt and didn't think much of anything. With the cardiologist suggestions and opinions, I took Kaitlyn off all her monitors since all they did was alarm anyway, and she also went off oxygen during the day including naps (HUGE). I did try some nights without it as well since I misunderstood him and thought it was OK. I wasn't monitoring her either so we will never know what was going on those nights (big Ooops!).

So when I got the call two days ago with her results from the Holter Monitor I was blindsided. The doctor started out by saying, "well we got her results back and it's..um.... 'fairly' normal". Fairly normal? I was expecting totally normal!!! He said they did detect some high and low heartrates while she was sleeping. He said more high than low actually. He said it was something we would need to keep an eye on, but nothing we needed to do anything about right now. So I took a big deep breath and was relieved (too soon apparently). Then he said, "we also found something that I did not expect to find and was quite surprised". My own heart skipped a beat it seemed at this moment. He then told me that Kaitlyn has something called Premature Ventricular Contractions, or PVC for short. He said it can happen is babies so that in and of itself shouldn't be a big deal. But he told me she had such a significant amount of them in just that short 24hr period that coupled with some high heart rate at times, it was something he couldn't ignore. It's also not something that we have to treat as of now. We will do more Holter Monitoring in 6 months. At that point the PVC should decrease or resolve if it is going to. He basically said it could end up being nothing, or it could be something. It could be the early stages of something that hasn't presented yet, or she could gradually grow out of it, or she could always have it, but have no other problems. He would not speculate about a prognosis as of now. He just said to spot check her sats and heart rate a couple times a week and if we notice anything unusual to call him.

So not at all what I was expecting. He told me that she needs to keep the oxygen at night and not to be weaning her off for several weeks. Darn. At least she is off the monitors all the time and off O2 during the day so she is not tied down to any wires or tubes while she is playing on the floor.

It just totally sucks. I know I should have this really good positive attitude about all of this, but it's been harder and harder for me to bounce back. I think once school starts and I get into a routine and don't have the daily stress of the kids home fighting all day, I will be able to get in a better place.

So that is how things are going. Despite it all, Kaitlyn is making progress anyway. She has been rolling all over the house for a few weeks now, but just this week learned how to scoot. It is so cute! She is still a happy smiling little girl and we love her so much!

She actually is still not sitting, but I put her in a sitting position and snapped quickly. She is getting closer though.

Now for the newest members of our family. Meet Howie and Harley. My neighbor gave us the stuff and we had to get a second bird to help the first one not be lonely. It has actually been fun and they are very well behaved birds. They are really quiet and are easy to take care of. We agreed mostly because Josh absolutely loves them.

Harley is blue and Howie is the green one.

Enjoy and thanks for reading this whole post!

And the winner is........

2011-07-16T12:28:00.000-06:00

So..... which child of mine is causing me the most stress and sleepless nights? Which one do you think has almost caused me a heart attack over the last couple days?

The Winner is.......................................

A TIE!!!!!!!

Josh has been having some weird jerky/shaky movement thing going on since thursday. He has been a little more quiet than usual and complains his legs and arms hurt again. Sigh.

And don't even get me started on this sweet angel. She has gagged and choked so bad twice since wednesday I thought I was going to have to do CPR. Then last night her heart rate dropped so many times I ended up sleeping in her room on the floor because I was so worried. I googled stuff (not a good idea at 2 am) and most of everything I came up with said it was apnea related. But her apnea moniter didn't go off. It was a horrible night. Good thing she is so cute!

Thank goodness Scott comes home from his camping trip today. I need someone to help me stay calm.

And that is the story of the life of a medical mom.

The long overdue update

2011-07-03T11:30:00.000-06:00

It is time for a very long overdue update. I haven't been blogging for the past month. The reason? I have been struggling emotionally with everything going on with Josh and Kaitlyn. There are different reasons for both kids and I will explain. But I am doing better now and am ready to face everything and jump back in the game.

So I will start with the little Princess.

She is getting so big!! She is rolling all over now (finally) and we have begun to baby proof. She is still her happy smiling self, but a little more shy with strangers. Darn that Stranger Anxiety! She is still having major reflux problems. She had begun to see Josh's GI doctor, Molly O'Gorman. (We love her!) We did an upper GI fluoroscopy last week and it came back with normal anatomy and severe reflux. Both of which we knew. The mystery as to if she is aspirating is still not solved. But she has made huge improvements this past week. I tried trial runs off her oxygen while she is awake (haven't tried in almost 2 months) and she is doing awesome! So she is off the O2 while she is awake. She still has Apnea so we have her on it at night. We will be doing a sleep evaluation with her soon. We changed her formula to EleCare, the same formula Josh has been on in the past. She is still having some diarrhea problems, but doesn't seem to have any tummy aches anymore. So who knows.

So you might want to know why I have been having a hard time then. Well the reason is plain and simple. Kaitlyn is eerily similar to Josh. She is having very similar feeding issues and behind in her development. The GI doctors (and yes I say doctors since 2nd opinions were involved) thinks she might have Mild CP. (Cerebral Palsy). I don't think so, but she does have the same tone problems Josh has. She is stiff alot and not very fluid in her movements. She is really jerky and uncoordinated. Josh still had more problems than her at this age, but what problems she has is the same variation as Josh. It has been hard to take in because I know how hard things have been for Josh. I don't want that for her. I wanted things to be different. Obviously there is something genetic going on here now that 2 kids are involved. I don't know where we are doing with this right now. I am a bit overwhelmed. She is waiting to get a Feeding evaluation with the rehab from Primary Children's right now. She is also going to have an eval and start therapy with Early Intervention in a couple weeks. It had been harder for me this time around to accept that things might not be going the way I envisioned. She is a sweet baby though and incredibly happy.

(This picture is from the last time we attempted to eat solids)

Now onto the Birthday Boy!!

Josh turned 4 on June 1st. I can't believe it has been 4 years since he joined our family. Time sure does fly.

He is getting so old now! He definitely is growing out of that Toddler stage, even with his developmental delays. He wants to do older things now even though for the most part he can't. He is still as obsessed as ever with cars and trucks. We are still really struggling with his liquid oral intake and even most days lately his oral food intake as well. We run his pump with water on him almost 24/7 to keep his system working. If we stop, even for a few hours, it reeks havoc on his body. He has been still having some major balance issues and all around neurological concerns. He does see his neurologist this coming tuesday so I hope to get something new to do. He also decided to be naughty a couple weeks ago and pulled out his tube during the night. By morning his hole was closed up and therefore earned himself a trip to the ER at Primary Childrens. It was very traumatic and I won't go into details on how they open the hole back up in case you are squeamish. Let's just hope he doesn't do that again. Also he had surgery this past monday to have permanent ear tubes put in. He did really well this time around with the two anti-nausea meds given before he woke up, he didn't have to stay all day. He also didn't have Versed which is what we think was the culprit for all the problems last time.

Finally I will leave you with a couple pictures of his birthday. He got a big dump truck, a big Mator and some cars from us. He was in heaven.

(I had to include a picture of his cake for my family who asked me to take pictures.)

Josh.....what do I say?

2011-05-11T10:28:00.000-06:00

I have been putting off this update partly because I knew it would be long, but also because I would actually have to sit down and put everything going on with him into words. And that is what I am not doing so well with.

So, I will just jump right in.

Josh was seen at Primary's two weeks ago for a Feeding Clinic appt. All in all it was a good appointment. He is exactly where they want him for height and weight. We did some med adjustments to include his weight gain since last appt (in July... sad!). But Josh has been having some major tummy issues again. Very constipated is putting it lightly. I started running water through his G-tube during the night, and it seemed to take the edge off the problem, but didn't solve it. After talking to Dr. O'Gorman about what is going on, we came a to a couple conclusions. He is not getting enough water for his weight. I didn't even think about that. I have just been doing the same amount as always. Also... he has a major motility problem. And she suspected that if we ran a small amount of water through his g-tube almost 24/7, it might just push things along for him. So.... we started that. I hate having to have him hooked up to his pump so much again, but guess what? It worked! I am doing a smaller amount per hour than before because his doctor thought we were putting too much for his body to absorb it where it needed to. And for whatever reason....Josh's GI system just does not function properly and will need a constant push. So.... as far as future goes for him, it looks like the tube is here to stay for awhile. I get alot of questions on when does he get to have it removed. Well.... there is your answer. Not anytime in the near future. So once we got that problem under control he is doing well from a GI stand point.

But of course it wouldn't be life with Josh if that was all we were dealing with. Ha ha. Jokes on me. About 2 months ago I noticed he seemed 'off' for a couple days. Slowly since then he has had more and more bad days. His balance is bad, he is falling and getting hurt so much. He has fallen off our barstools probably 3 times a week now. He hadn't fallen off in months. He has bad bruises on his legs and arms from falling, and even some on his chest and back. He endurance isn't what it used to be. He gets tired doing things he did fine before. He seems to run stiff legged alot. He seems uncomfortable alot. He complains of his legs and arms hurting. I don't know if it is a tone issue or what. He is genuinely not himself. Even his preschool teacher has noticed and was concerned. I called his Neurologist to get an appt and of course they are booked out until September now. I can't wait that long. So I am going to take him into the pediatrician and see if he has any better suggestions or can get the ball rolling with neurology faster. We'll see. It has just been heartbreaking to see him struggle so much. He did good for so long that I kind of 'forgot' about how things can go with him.

And then to top all of this off we had his IEP meeting on monday. I have a love/hate relationship with IEP meetings. They are great because it is the only time you have the whole team of people that work with your child together in one place. But... I always leave these a little sad because it is a stark reminder of how far he has to go.

This time the big focus was on speech. Meaning it was the one thing we talked about in depth and there was an additional speech pathologist there from the district that gave good input too. Basically I learned that his diagnosis of Speech Apraxia is the hardest speech disorder to overcome. Awesome. I leaned the tiny little progression steps of speech and realized that he has a really long way to go. He has to learn the basics... like the most common sounds... pah, bah, mah, kah, lah to even begin to learn words. That is what they are working on. He is doing the PECS (Picture Exchange Communication System) very well. He is signing very well as has has been for over a year. The goal is to get him ready for a communication device by mid year next year and be very proficient at it by the start of Kindergarten.

So Basically I was told it is likely going to be years until he can speak intelligibly for people to understand. They don't know yet if he has developmental Apraxia... meaning as the years go by and he learns to speak he will retain everything... or if he has regular Apraxia. That means he will lose words and gain words his whole life and having a normal conversation will always be a problem. He has already lost some words that he could say before. So they don't know. This next year will be crucial in that regard. We might get a better long term prognosis next school year.

So... that is what is going on with Josh. He just need some extra love and support right now. Things are difficult for him right now, but he is a trooper and pushing on through.

I will update as I get more information.

Kaitlyn's Girly Room

2011-04-30T14:13:00.000-06:00

It has taken me way longer than necessary to get Kaitlyn's room on here. Hers was actually the first room completed too! We had carpet laid on Thursday April 14th and she slept in her room with all her furniture for the first time that night. The boys moved in the night after that.

So anyway, here is a before picture of her room when the boys were in it. You can see the amazing, ahem, awful, wall paper that was up on the bottom half of the walls.

A Good close up of the wallpaper. Yes... it has pheasants on it. Isn't is lovely?

And the dreaded valance. It was screwed into the ceiling so it's not easy to take it down.

And here is the wallpaper stripping process. My awesome Mom came and did most of it for me. She was such an amazing help with this room. Other than a couple things here and there that Scott had to do... this room was all done by me.... all the work from start to finish. He was pretty busy with the basement.

And here is the finished paint and decorating job. I LOVED how it turned out and I had so much fun doing a girl's room. It was a blast!

Now here in the complete finished room. This was after the new carpet was in and we finally moved her furniture in. It was so nice to get her things out of our room and get her moved into her own space. And the room was such a dramatic change. The pictures don't do it justice.

Her crib and new crib bedding.

I had fun ordering things off of Ebay to decorate her room with. This is on the outside of her door. Those flowers are all over the walls in dark pink and brown. You can't tell very well in the pictures.

This is over her closet. In case you can't read it well it says "Giggles, Ribbons, Bows and Curls....Oh Thank Heaven for little Girls.'

This is over her doorway.

This is over her window.

This is one of the things Scott did for me. He hung this shelf for me to put the letters of her name on.

One of the reasons that things were so hard for me the last couple months was because our basement was being done, we were busier than ever, and I also stripped down and re-stained Trevor and Jordan's old dresser for Kaitlyn and her changing table. This is a before picture of her changing table.

This is the after. I stained it dark to match the crib and dresser. It was alot of work and my mom once again stepped in and helped me, and it was so worth it. I love how it turned out.

This is also the after of the dresser. It was actually already dark... even darker that this. But the boys has trashed it so I had to do a bit of repairs on it and then stained it so you can see the wood grain through it. I also took the drawer handles off and put these pink knobs back on this and the changing table.

So there you have it... the pretty pink room. At least that is what Scott and the boys are now referring to it as. I am so happy to have all 4 of my kids in rooms again and my life back under control. It was fun, but I am glad it's done.

Our Basement is finally done!!!!!

2011-04-15T22:21:00.000-06:00

Since this was my(Scott's) project. I thought I would do this post. Please enjoy!

Here is Trevor's room completely done! Go Pack Attack!

I am 100% jealous that Trevor sleeps here and not me.

This set needs to come in King Size.

One inch off on the the closet, and we had to use curtains.

Trevor's room before carpet.

Jordan's room before carpet.

Jordan's room completely done!

Jordan's built in desk.

Another view of Jordan's room.

The two rooms during framing.

More studs! Why am I not in a picture of studs?

Jordan's room during framing.

Jordan's room during sheetrock.

More of Jordan's room during sheetrock.

This is a duplicate. OOPS!!!

Trevor is 9!!

2011-04-14T10:17:00.000-06:00

Trevor turned 9 on the 9th of April. Can you believe I have a 9 year old???

I wanted to do a long post about him, how he is, and my yearly post about Autism Awareness with April being Autism Awareness month....

but......

my life is still in chaos and I don't have much extra time. Carpet is being installed today and by saturday night, my house will be back to normal for the first time in almost a year. It is so exciting.

In the meantime.... here is a couple pictures of Trevor from his birthday. We did his party before so on is actual birthday he got a cake and just our family sang to him. He spent some of the day with his aunt Allyson (Scott's sister) because they share the same birthday and she took him out. They went bowling, miniture golfing and to McDonalds for lunch. He absolutely loved it. Since we had a marathon painting day that day to finish the rooms, it was nice he was still able to go have fun.

Birthday Party

2011-04-06T22:31:00.000-06:00

We did a combined birthday party for Trevor and Jordan this year. Since our house is torn apart, we moved the party to Scott's parents house. It was a fun little party for both sides of our family. Here are some pictures from that night.

I could not get a decent picture of the kids before we sang. Surprised?

I had to get a picture of the cake. I picked it up from walmart the day before and looked at it quickly because I wanted to make sure the boys names were spelled right. I didn't even look at Happy Birthday because I figured it was a given. I was wrong. If you look close you will see they spelled it, "Hapy Birthday". Awesome.

I can't believe by this coming saturday I will have a 9, 7, almost 4 and 4 month old kids. Time sure flies these days!!!

Josh... in a nutshell

2011-03-21T01:37:00.002-06:00

Where do I even begin with my little Joshie? That is what everyone calls him, Joshie. I do too on occasion, but I have my own special nickname for him and nobody else uses it. Since he was so small for so long and had such a hard time growing and gaining weight, I would always call him my Little Bug. I still do call him that sometimes, but mostly the nickname evolved into buggie or bugs.. Don't ask me why.... probably because it has an ie sound just like Joshie does. But no matter how big he is, or gets, he will always be my little bug.

He is doing very well right now. He is always having some issues going on, but in general he is doing well. He just saw the fabulous sleep specialist, Dr. Pfeffer. She changed his dose of Trazodone and added a med called Clonidine. In case you were wondering..... the sleeping had gone to a point of 3-4 hours of wide awake in the night again. Sigh..... one morning I woke to find THIS all over his wardrobe closet. Awesome.

He hasn't seen GI or the Feeding Clinic down at Primary Children's medical Center because I had to reschedule his appt due to Kaitlyn having RSV. But over the phone we did some med changes and did one HUGE change.... formula. We were able to put him back on Nutren Jr. a milk based drink (basically like Pediasure) and he has done fantastic on it. Some minor added constipation problems, but worth it for the fact that he is now eating much more by mouth. I still have no idea if we will ever get rid of his G-tube since we use it for water every day. He just won't drink enough to keep his crappy GI system running smoothly. But.... it's a huge step in the right direction.

Speech is coming along sooo slowly. He adds a new word about every 3 months. I am in the process of looking at some different things to do with him for that. He loves to mimic easy sounds though and keeps us laughing with his attempts.

Now for the picture below. One night Scott was trying to see how well Josh understands things and was giving him weird directions. Most everything was a little over his head and he didn't get. Just to be funny Scott told him to squeeze his cheeks. This is what he did:

Now these next couple pictures really show his personality I think. As you know Scott is finishing off two bedrooms in the basement for Trevor and Jordan. So for the last several weeks he has been spending hours and hours down there. On occasion he has things he needs Trevor and Jordan to help with. Because of Trevor's sensory issues, we bought some medical gloves for him to wear. Scott even wore them a couple times for things. Josh caught onto that and for the last month or more gets a hat and one glove on to go 'help' downstairs. It is always just one glove which makes me laugh. And we don't know why he thinks he needs the hat unless it is because it is cold down there. But he is always putting this hat and one glove on (never gets the fingers in the holes right or even the glove right side out LOL) but he is very adamant that he wears this. It is just so stinking cute!

And the last several days my mom has been coming to help strip off wallpaper in the room that will be Kaitlyn's. Believe it or not, Josh was the biggest help to her. We used a fabric softner/warm water mixture to peel it off. My mom would get several places started along the wall and Josh would come behind her and peel it off. She was amazed at how helpful he really was. And he worked with her for 2 solid hours on saturday either stripping down the paper, or washing the glue off with warm water and a scrubber. I have never seen Josh that focused on anything before. (The ADHD meds we have him on are really working!!) I love my little bug so much. He is going to be 4 in just a little over 2 months. I can't believe it. I am trying to get all the snuggle time in right now because soon he won't be interested. I don't know what I will do then. He is a sweet boy that has overcome so much and deals with so much on a daily basis that most people would give up. Not my Josh. He just chuggs along with his happy go lucky personality that I love so much.

Kaitlyn (picture overload)

2011-03-19T22:15:00.004-06:00

Now it's Kaitlyn's turn for a post. I haven't been able to do a lot of posts I wanted to do because I needed pictures to go along with them. So now this is going to be catch-up post of several different things.

First off.... just wanted to show you why my little girl needs a room desperately. She already has taken over half of our bedroom. And now the living room is being over-run by her equipment. This first picture is her extra O2 tanks and where I stash all the cases for her monitors, oxygen, ect. for when we take her out.

This is her O2 Concentrator and suction machine. Plus some extra supplies I have are currently being stored here as well.

And we had to move our rocking chair to the basement and put the coffee table against the wall to give us somewhere to put her monitors and ect so the cords weren't stretched halfway across the room. It has been quite the adjustment.

This picture I took one night before her bath. She has built in toys now with all her wires. She has two leads that monitor her heart rate and respiration's for the Apnea monitor. They are on her left and right side with that white band to hold them on. She also has the oxygen cannula on her face with tubing to hold on to. She also had a pulse oximeter that wraps around her foot.

If you look closely you'll see she has a wire of some kind in each of her hands. At least if she chews on the oxygen tubing it is fine. Built in teething toy.

Now to change gears. We blessed Kaitlyn at our home on March 6th. Since we do not take her out yet with it being RSV season still, we opted to do her blessing here. It turned out beautiful and it went very well.

My sister made her a bracelet to go with her dress. It turned out so adorable!!! I did a comparison picture to show you how tiny the bracelet was. I used a milk jug lid to show you the size.

And a closeup of the bracelet. My sister did an awesome job!

This is Scott's grandma Margie Christensen. This is who we got Kaitlyn's middle name from. She is an amazing woman and we hope that Kaitlyn can grow up and be like her with her wonderful example. It is such an honor to use such a great name for Kaitlyn's middle name.

And of course my sweet baby in her blessing dress. She looked so beautiful!!! It was an amazing experience and very spiritual for our family.

These pictures are from last week. I borrowed a Bumbo from a friend in our ward to help Kaitlyn get some better upper body strength. She looks so big in it!!!! Where has the time gone? My newborn is gone and she is growing up.

Whew!!! That was alot of pictures. Now for a quick update.

Kaitlyn is doing pretty good. She has been sick on and off several times since her RSV. We have not been able to begin the process of weaning her off oxygen when she is awake since we have to keep upping her oxygen due to being sick and her sats dropping. But we hope by mid-april to have her off when she is awake. As far as using it at night, it looks like there is not time frame in sight yet. She still has several apnea episodes which are only better if we keep her O2 up higher when she sleeps. We'll get there though. Developmentally she is right on target for her corrected age. She is holding her head pretty good now with just the bobble head effect going on. She smiles, just learned to giggle and is cooing now. She rolls to her side, but not over yet. She still does not hold any toys, but will hit at her floor mat toys that dangle. Her reflux is slightly better now that we have her on two meds for it. She is going with Josh to see an Ear, Nose and Throat doctor on April 15th because of her numerous ear infections already.

All in all she is chugging along at her own pace and is very laid back and happy. We love this girl so much!!!!

Trevor.....and the guilt

2011-03-19T00:52:00.004-06:00

I almost waited to do this post because it is going to be a hard post for me. I have an extreme amount of guilt I am dealing with when it comes to him.

Don't ask me why he was in our dryer.... Scott took these pictures. I asked him about it and he didn't remember why Trevor was in the dryer either. But it's funny.

Here is another picture I love. When I am really busy I can usually talk Trevor into holding or feeding Kaitlyn for me. He will usually do it for a few minutes. He does NOT like her spitting up and freaks out when she does. In fact seconds after I took these pictures he got spit up on and had to take a bath. No... not because it was that bad, but because he freaks out. But the pictures are sweet.

Now for the update.

Trevor is really struggling right now. There is just no way to sugar coat it. I am tired of pretending things are going splendidly around here, because they aren't.

Of course this all goes back to the end of my pregnancy and when Kaitlyn was born. All 3 of the boys had the adjustment to deal with. We knew that. That really isn't the stresser here. It just happens that the pregnancy was one of the reasons we are where we are now.

Some background: Trevor and Jordan moved to a Charter School this school year. It has been great for Jordan. He is learning so much more than I can even believe and is being challenged like he needs. Trevor has struggled. I did research and talked to several people including the board of directors before making the choice to move the boys. Theyassured me over and over that they were set up for special needs kids, had a speech, OT and PT onsite, ect. I expected some bumps because this was the first year for Good Foundations Academy (GFA). In september we met as an IEP team for his yearly review. At that time school was going great, he had an awesome teacher and was happy. We made the decision to move from an IEP to a 504 since he was doing OK with the curriculum, it was the modifications we needed. I signed all the paper work to do the full fledged testing since it was due January of this year. I was warned it would take a few weeks. No big deal. Then the end of the pregnancy happened, a couple outpatient visits to stop labor, Kaitlyn coming 6 weeks early.... and before I knew it Christmas break was here. I realized I had never seen his test results or heard from the school. Then in January Kaitlyn gets sick with RSV. Life becomes chaotic once again. I am taking Josh to several Dr. appts and evaluations, Jordan has a couple dentist appts, I was getting Trevor back into his bi-monthly therapy appts, and the list goes on. I talk to the lady I carpooled with and found out the director for special education was fired/quit over winter break and there had been NOBODY at the school until Feb 1st. I was so mad. Mostly at myself because this was something I should have known. I dropped the ball and didn't stay on top of things for Trevor. So I call the school and ask to have his teacher call me (she is awesome and called me several times over the school year). We have a good heart to heart. She tells me he is failing reading and writing, has a D in Math and Cs in the rest of his subjects. He is not keeping up with the accelerated pace the board decided to set over winter break. I leave several messages for the new guy who took over for the special ed and wait for him to contact me. In the meantime I basically do a lot of praying and talking and decide that it would be better for Trevor to go back to his old school H Guy Child. I get in contact with the special education head there, who is awesome and remembers us and was so happy to hear Trevor was coming back. I finally hear from the guy at GFA and he apologizes to me and tells me that the school really did drop the ball big time and let Trevor fall through the cracks. He had only been there for like 2 weeks. He said it was so bad he called the State in to audit the school and get them back on track. I told him I just wanted Trevor's file and former IEP ready to get sent to his new school. I then go and get him registered and wait for the file to get there so we can decide how bad things are and what to do. He was out of school for a total of 3 weeks. It was lot's of fun. LOL.

So this past monday both Trevor and Jordan started at H Guy Child. When the school got his file and I talked to the Coordinator at H Guy Child she told me she was absolutely stunned at how bad his file was. There was paperwork missing, paperwork not done right and legally it was a mess. So for now we have Trevor in a normal 3rd grade classroom and are trying to get things going so he can be ready to go for next year. With how much work this will take it is basically like this year is a wash. I still don't know what is going on.

I just can't believe that GFA screwed up so badly! I think they are a great school with an awesome curriculum. They just aren't set up for special needs kids and they should have been honest with that in the beginning. They are basically trying to be a 'gifted' school without coming out and saying it. And that is great. I just wish they had decided all this before they opened their doors.

I know someone is probably going to tell me that it's not my fault this happened. I know that the school screwing up is not my fault. I am so angry with myself for not staying on top of what was going on. I have never been so out of the loop with Trevor and his education as I did this past school year. I am going to have a really hard time ever forgiving myself for this. As a parent with an autistic child, I KNOW I am his advocate. Nobody will stand up for him but me. And I even know that the second you let your guard down and forget to keep all this as a top priority.... THIS happens. And I have had so many parents of autistic kids tell me this and I vowed to NEVER let it happen to my son. And I did. And he is paying the price. His life is upside down right now and he has regressed in so many ways. And I will feel horrible about it until the day I die.

Now you know that life is not hunky dory at the Christensen house.

But, it's not the end of the world either. I got on my big girl panies and am fighting back. Hard. Life will eventually settle down and in a few months (yes it will take that long) we will be able to adjust to our new normal. It would just be nice to fast forward to that point. LOL!!!

Jordan is 7!!!

2011-03-17T12:31:00.002-06:00

Jordan turned 7 on March 8th. (Yes I know I am late at posting, but if you read the previous post you'll know that it was because of our computer I wasn't able to do any posts.)

Since I am finally going to be able to do an update on each of my kids now, who better to start with than the birthday boy?

Here are some facts about Jordan you may or may not know:

~He loves Blue. Anything blue. His new bedroom will have blue walls and blue bedding. He even wanted a blue ceiling, but I had to nix that idea.

~He is becoming such a great helper when he is in the mood. It seems like he can do more to help me than Trevor because he understands complicated directions. He will do all sorts of odd jobs around the house if I make him a to-do list.

~He loves Kaitlyn. He likes to spell out her name when referring to her. Makes me laugh. He loves to get her to smile at him and feels like it is a huge accomplishment when she does.

~He loves to play with my iTouch because Scott downloaded a dinosaur game. He is pretty darn good at it too.

~He is reading like a champ these days. He doesn't particularly like math (what MY child not like math? LOL) and will argue about doing his math homework.

~He seems to be the master at knowing odd facts. Mostly it is due to him watching the History and Discovery Channels lately. Whatever it takes to get him to learn.

~He is a very polite, well mannered boy. At least everyone outside of our family thinks so. LOL.

And this picture below really captures his personality. He keeps us laughing all the time.

Happy Late Birthday Jordan!

Our Basement

2011-03-16T00:27:00.004-06:00

In case you have been wondering what happened to me and why I have not been blogging much..... this is it.

First of all our computer was giving me so many issues. It would not download pictures and I wanted to post pictures on all my posts. So now that we are far enough into our basement budget, we could finally get our new laptop. So now I should be able to blog lot's and lots!

Now for the basement. This is mostly for my sister who lives in Philly (Hi Amy!!) so she can see the progress. This is basically a weekly timeline. Scott and my awesome Father in Law started framing on the 19th of February. Today both rooms have the first coat of mud on and Scott is sanding them down to be ready for the next coat on saturday.

Here is Trevor's room framed.

This is Jordan's room framed.

This is looking from the bottom of our stairs. Their doors are right next to each other.

Closer view....

And this is another view of Jordan's room.

This is their doorway's again, but with insulation. Now you can really see the doorways.

This is Jordan's room again.

This is Trevor's room.

This is the other side of Trevor's room. His room is really big. Very rectangular so long and more narrow. He will have lot's of room to be left alone now.

This next picture is almost the same view...but with Sheetrock on it now. I took the picture before they got to the room for tape and mud.

He has that huge support beam that runs the length of our basement in his room. We decided to paint it white and not sheetrock it... much easier.

This is Jordan's room.

In the pictures below you will see that he has a small built in desk area with a light above it. We had a small awkward space along one wall because of the plumbing for the bathroom that will back his closet. My Father in Law, Ron, came up with this awesome idea to use part of the extra space for a built in desk (he did it in one of the bedrooms in a previous house) and Jordan is so excited to have a desk area. It will also have shelves above for storage (for all his 'projects' he is always doing LoL).

And so that is what is going on in our house. There has been so much pounding, sawing, banging to make the kids (well Josh and Trevor) go into some major sensory overload. My upstairs has a permanent layer of white powder dust from all the construction. It's so worth it though.

I just want to also take the time to let you know how amazing Scott is. He is working so hard on this basement. He spends about 10 hours every saturday now and for the last 2 weeks he spends up to 5 hours at night, every night, during the week to be ready for the next big step each saturday. He is still working and helping with the kids on top of that. I couldn't ask for a better and more amazing husband than I have. I love him so much. I will get all teary eyed if I keep on going. This last few months have been really stressful on both of us and he still works as hard as ever. Love him!!

And I want to also let you know how amazing my family is! Ron has been here for the last 4 saturdays working all day with Scott to get this done as soon as humanly possible. With him being the bishop I know he has other things he could be doing but he is so willing to help. I am so grateful. I am also grateful for my brother in law Jeremy for coming one saturday to haul sheetrock down our stairs and sheetrock the ceiling. I know it wasn't easy for him to get out on a saturday with Raeanne working all day. My mom was her for about 3 days straight helping me strip down and re-stain Kaitlyn's dresser she will be using. I had fallen on my elbow and she helped me immensely so I could stay on track with my timeline. My sister has come and helped with kids for me, and been an great help in numerous ways from babysitting to helping me with Kaitlyn's clothes. And also to my brother in law Brian. He came and helped haul sheetrock down, put it up on the ceiling, came one work night and worked until 10pm so Scott could be ready to tape and mud last saturday. And even came tonight to help unbunk the boys' beds so we can clean out their old room this friday. He stayed and helped organize and throw stuff away for me. It saved me hours of work. I have a cold and Kaitlyn is also sick so it was so nice to have him come do the one thing I was dreading this week.

I have amazing family. I love my family. I love Scott's family. We would be up a creek without a paddle if it weren't for them. Love you guys!!!!

You've got to be kidding me!!

2011-03-02T11:40:00.002-07:00

So last week on monday the 21st of February, I was taking my dog to get neutered.... and slipped on the ice getting out of my van. I landed on my left elbow and it hurt a little but I didn't think much of it since I was trying to get Rosco checked in for his surgery. While driving home I decided to feel my elbow since it was starting to feel funny. I felt a big lump. It kinda scared me a bit. When I got home I had to talk myself into taking my sweatshirt I was wearing over my t-shirt off to get a look at it. It was not pretty. It looked like someone had shoved a golf ball under my skin. I called my mom at work to see the best thing to do. She said ice, ibuprofen and a sling. My sister was so nice and came up to my house to bring me a sling and clean out and bandage me up. Here is a couple pictures I took that morning off my cell phone (so I could send it to my mom to look at). Be warned...it's gross!

Now this is what it looked like 2 nights ago. Not pretty at all, but the swelling had gone down quite a bit. But.... it hurt worse every day and not better. I only wore the sling the first day since I couldn't get anything done with it on. Probably not one of my best ideas.

So my mom kindly suggested I really needed to go have it looked at. So once again my amazing sister came and watched my kids yesterday so I could go to the Doctor. He was not impressed with me for waiting 8 days to come in. He did some x-rays and range of motion tests. Diagnosis? I cracked my elbow. Awesome. I have an infection in the skin where the scrape was (very common I guess), but coupled with a crack in the bone can lead to some serious stuff if the bone gets infected. Double Awesome.

So... I am on strong antibiotics, pain killers and ibuprofen for swelling and the dreaded sling for 3 weeks. I have to go back on friday to make sure the infection is getting better. Triple Awesome.

Being one handed is not boding well for having 4 kids, 2 of which are very dependent still. It's been interesting to say the least. I just hope it heals fast now that I am on the right track.

I just didn't have any excitement going on right now. LOL.

Kaitlyn

2011-02-03T14:25:00.002-07:00

Since it seems all the kids have things going on, I thought over the next couple days I will do a post on each of the kids. So keep checking back.

Kaitlyn is first since she has the most going on right now.

She had her official 2 month appt (at 2 1/2 months) two days ago. She is making some big changes and I am so happy! She was 9lb. 8oz!!! Can you believe that? The doctor thinks the weight gain was due to the added calories the rice cereal in her bottle is giving her. We actually are not going to do that anymore anyway. It wasn't helping as much as we wanted and is a pain to do. She was 21 and 3/4 inches long. She is getting so big. Developmentally she is lagging, but should be with being a preemie. Since being on the oxygen she has made leaps and bounds with development in some areas though. She is smiling now and on the verge of cooing. She is much more alert and content to look around. It has been night and day difference in her with the oxygen. I am so incredibly thankful that the issues going on were caught and she is doing so well. In some ways it has been like starting all over with a newborn since this whole RSV thing happened. It is amazing how much of a setback we have had. But it is OK because she is going to improve so much faster. We also put her on an Apnea monitor. So yes she does have two monitors and her oxygen to lug around. Fun times. I am in the process of getting video and ect of all that. Her Apnea monitor has gone off each night since we had it, but at least the alarm wakes her up and she corrects herself and starts breathing again. It is sad how immune I am becoming to these kinds of things. Her Oxygen saturation levels are really good, but we do put her up to a 1/2 liter at night to hopefully remind her to keep breathing and reduce or eliminate the apnea. It's hard to tell if it is working because she has been that high on oxygen the two nights she has had the Apnea monitor. During the day we are down to the second lowest setting of flow.

Also she had an appt with a Ophthalmologist on monday. Everything looks good from a structure point on view. There is nothing that would require surgery or anything to that nature. She just has a delay in vision development. But alot of the vision things going on ties in with the Central Nervous System, which also regulates breathing ect. So the doctor was not surprised with what is going on with her oxygen issues that her vision is delayed too. We will watch it for 3 months and then she has an appt with a pediatric eye doctor who specializes in preemies to see where we go from there. Unless things worsen...we just wait and see at this point. So that was good news. I can deal with a delay in development. I was worried about something being wrong that would require more aggressive treatment. Wahoo!!!!!

It's been interesting adjusting to the new things going on, but it is becoming more and more normal each day. I will keep you posted on how she is doing though.

Here are a couple pictures I got a couple days ago. They aren't the best clarity because I was hurrying to take them to catch a smile.

Life as it is now....

2011-01-30T14:34:00.004-07:00

Just thought I would do an update on Kaitlyn and how the week is going. Or how I am surviving, might be more like it!

Kaitlyn has done pretty well. Just a few times of her sats dropping and having to turn her Oxygen up high. She recovered really well though. It's a balancing game that I hate. When she is awake she just really needs a wiff of O2 now. But when she sleeps she needs more. She will be awake in her bouncer one minute, and fall asleep and the alarm goes off the next. But I am getting better at keeping a constant eye on her monitor so I know when she is dipping and fix it before it goes too low. It is amazing the difference in her with the O2. She is MUCH more alert than she ever was, she stays awake for longer periods of time, and she sleeps 4 hour stretches at night. It's been wonderful.

On the other hand, since yesterday she seems to not be feeling well... or feeling worse than before. I don't know what it is. I am really glad she has a doctor appt with her Pediatrician tuesday morning. Hopefully her ears and lungs are clear now and it's nothing serious. She also has an appt tomorrow morning with a Pediatric Ophthalmologist to get her eyes checked out. I am kinda nervous about that appt. I would really like to hear there is nothing wrong and she just needs to get bigger. We'll see, I guess.

Now for Kaitlyn Survival 101 this week.

When she was in the NICU she got hooked on those Soothie binkeys. It took a month to get her to take something kind of simliar to it, but one she could keep in her mouth. While she was in the hospital last weekend we lost her binky and the only option we had was....yep you guessed it... the Soothie binkeys. She was in heaven. When we came home, she kept spitting her other one out and when I would give her the Soothie ones, she would be happy, but could not keep them in her mouth. I was at Babies R Us on wednesday and found these GumDrop Paci's made by the same company. I bought a package and the rest is history. If you can tell from the picture, they are curved and fit her face so she can keep them in. Awesome!!!

Now for the other change I made yesterday. When I found out I was pregnant, I needed lots of things, including bottles. My sister had these VentAire Bottles I had given her to try with my niece. When she offered them back I jumped on it since I wouldn't have to buy bottles. After having Kaitlyn home for 2 months.... I remember why I hate them so much. They come apart in 6 pieces. I have to take them completely apart to wash them and put them back together. It was so time consuming, especially when I had so much to do.

So when I went grocery shopping last night I bought the cheap Parents Choice bottles and let me tell you it was the best thing I did! No more taking bottles completely apart, washing them, putting them back together, worrying about the bottoms leaking. Pure Bliss I tell you! And since her reflux is so bad anyway..... having a bottle that vents is not making any difference except taking up too much time to clean.

The one thing I really do miss is my rocking chair. We had to have somewhere to put all Kaitlyn's Oxygen stuff and I wanted it to be somewhere that would reach from our living room and into our bedroom where she sleeps. It is getting so amazing how much medical equipment we have in our house now.

This is the Suction Machine we have to suck her nose out. Lately I am getting more formula out of her nose than snot. I am going to have a talk with her doctor on tuesday about what this means and where we go from here.

And last but not least..... this is what we woke up to this morning. Josh had stashed a marker in his room yesterday at some point and had some fun. Good times.

Hospital Stay

2011-01-26T13:53:00.005-07:00

Kaitlyn is home. Halelejah!!!! It was a long 3 1/2 days in which I did not get any sleep.

She is doing better. She is slowly recovering from her RSV and Pneumonia. It's been so surreal to me that she ended up with RSV. We had it drilled in our heads from the NICU and her Ped that she was high risk for getting it and we did everything we could do to prevent it and she still got it. I am glad that I have learned to trust my mommy instinct and got her in before it got really bad.

We got a suction machine to keep her clear and let her lungs heal. Even though she is home, she is not well yet.

She also came home on oxygen.

This is not RSV related. Her being in the hospital was a blessing in disguise. She has a problem with keeping her oxygen saturation up while she is asleep. I knew there was something going on with her and why she sleeps so horrible from the moment we brought her home from the NICU, why she sleeps noisily and gasps alot. The Ped. thinks it is preemie related and therefore we have no idea how long she will need the oxygen. She was monitered on a cardiac monitor the last 36 hours of her stay and they were able to determine that there isn't something drastically wrong. Good news! She is on a little flow of O2 when she is awake for now and then we turn it up when she is asleep because she needs more. In about 3-4 weeks we are going to wean her off while she is awake. The dr thinks it will be a few months of oxygen when she sleeps. If it goes longer than that, he will start ordering more tests. But for now both him and the other Ped thinks it is preemie issues that didn't get resolved or caught in the NICU. All I know is that she sleeps so much better now. I might actually get to catch up on some sleep soon and feel normal again. Yay!

She also had a Barium GI test done to check for abnomalities in her anatomy that might be causing all the vomiting and spit up. Everything came back normal with a diagnosis of severe reflux. We may or may not do further testing in the near future for that. We started adding Rice Cereal to her formula to thicken it and it's helped a tad bit.

THe only other news I have is that she is finally 8lb! She is 8lb 2 oz to be exact and just a smidge under 21 in. long.

We did get an appt with a pediatric opthalmalogist for next monday. There are alot of concerns with her eyes and if she can see well. I will update after that.

For now...here are some pictures of her from her hospital stay. Also a video at the end. Enjoy!

RSV... Really??!!

2011-01-22T15:13:00.003-07:00

My baby is sick.

She has RSV. I am worried about her. Not as much about the RSV, but other things going on. When I know more I will update.

Even her brothers are concerned.... I think. LOL!

Keep her in your prayers right now if it's possible.

Sleep? What Sleep??

2011-01-12T13:54:00.002-07:00

I miss sleep.

Over the last week or so, my thoughts are consumed with how I can get more sleep. LOL. Having a newborn is very sleep-depriving. Having a newborn with bad reflux? That is just plain exhausting.

Kaitlyn was switched from the Similac Sensitive for Spit-up to the Similac Expert Care Alimentum 8 days ago. She had started to have diarhea when she came home from the NICU, and it just progressed to something awful. Her Doctor said that diarhea is more concerning than the vomiting/spit-up. So that is why we switched her. And it worked!! She is back to normal and seems much better in that regard. The problem is that her formula is no longer thickening in her tummy and comes right back up. It is sometimes almost comical how much puking I deal with everyday. She goes through several outfits, blankets, burp pads daily. I am not being overly dramatic here either. She can shoot that stuff a few feet sometimes. I know she is miserable and I am too. But as far as her health is concerned we needed to get the diarhea under control asap. We take every precaution we can to help her keep it down, such as not laying her flat ever (except diaper changes), we hold her completely upright for at least 15 min if not 30 after each feeding, and she spends alot of time.....

Here during the day,

Here at night, (it's a travel/portable swing in our bedroom)

And now here.

I used a wedge to create a elevated bed for her in the crib, but it was becoming increasingly obvious that it was just not enough. After the last 2 nights of only getting 15-30 min stretches of sleep all night, I decided to do some re-arranging. I am borrowing my sister's Bouncer Seat since the one we were given was not as supportive for such a tiny newborn. So I put that in her crib today and it will stay there.

And here is where she spends her time in our living room when she is not in the swing. Finally at 7 1/2 weeks old with just a little extra blankets for support, she can use this bouncer seat. So it will stay in our living room. She sleeps well in the bouncer seat during the day, so we'll see if I can get her to sleep better tonight now that the same one is in our room. I sure hope so. I am exhausted!

Notice her bouncer seats are covered with blankets. That is so as she pukes/spits up all day, it won't get on the bouncer seat, and I can just replace the blanket with a clean one. It takes alot of blankets to keep things going around here. I don't have one in her big swing right now, but we cover the front of her with burp pads and it seems to work. Her travel swing is actually toast...I ordered a new one and it is arriving this friday. So it is not covered in blankets either, but usually is. I have used that travel swing with Jordan and Josh, and my sister borrowed it for her 2 kids so it has seen better days. It was used and abused and did it's duty. But I need something portable that I can fold up and take with me if I ever want to hang out somewhere over a naptime. This is the reality of having bad reflux kids. You can't lay them down flat or they gag and choke, so you have to have a plan in place for when you aren't home. I used the travel swing with Jordan and Josh and it was a lifesaver. Oh the things I go through to do 'normal' things. LOL!!

So anyway, to make a long story short, I am being ruled by puke right now and I hope we can find a better balance when we go back for her 2 month appt on the 24th of January. Her Dr said as soon as we got the diarhea under control we would work on the vomiting. She is already on Zantac for reflux, so I am not sure what the next step will be. It's been really sad to see her going through it. It comes out her nose all the time... she has to be miserable. So once again, we wait and see what we can do next.

The Month in Review

2011-01-07T20:07:00.004-07:00

I know there has been a lack of posts lately. I promised I would do my best to keep this blog updated, but I didn't count on the many things that have came up.... and adjusting to juggling 4 kids.

Also, I am really sorry for the lack of pictures..... but guess what??? We got a new camera for Christmas!!! So these pictures are taken with that camera and I am finally happy with non-fuzzy pictures (as long as I have the settings right).

So get comfortable, we have had a lot going on!

Scott is doing good. Still working and liking his job. He just recently got a new position at work and he loves it. He has also enjoyed the break from Cub Scouts between having a new baby and the holidays. But now he is getting geared up for the year.

Trevor is also doing pretty good. We started him on a new med over the last month and I think it has helped. It's hard to know sometimes. But he is also recovering from the stress that the holidays bring. I am glad school is back and we can get a good routine going now.

Jordan is doing good too. He is loving having a new sister. He asks to hold her alot and will always run and grab things for me or do something for me while I am busy with her. His new obsession is having me make his chore lists and trying to see how fast he can get everything done. I love this obsession, it's been great for me!!

I am doing much better now. Since my last post, I got an infection in my C-Section incision site and that set me back quite a bit. But I am finally almost 7 weeks out (on sunday) and I am feeling about 90%. I have been careful not to do too much heavy duty too fast so I can avoid any other setbacks. It's nice to be me again though. I am tired of course. Kaitlyn has had some minor problems and so she hasn't been sleeping well. But th at is pretty routine for a new baby anyway. I am getting better at adjusting to the lack of sleep.

Now for Josh. He is doing alright. He has had a rough few weeks and I hope things improve pretty quickly now. I took him to the Dr. 4 weeks ago to have these bumps looked at he has had on his stomach for the last 4 months or so. I can't remember the name of what it was, but it's like a virus in the skin. Since at that time they were dormant, it was better off to not treat them. But since that appt, they have enlarged, gotten red, and he complained all the time about them. During this same 4 week period, I cut way back on his G-tube feedings to see how he would do. He also had been sick since about 6 weeks ago and could not seem to get well. Last week he started having some really off days... meaning very irritable, bad balance, paleness, ect. So I took him back to the dr 2 days ago for everything. We decided to treat the bump things and be done with the whole thing. His dr had to put some stuff on it and basically it burns them off. By wed. night they were huge, red and blistering. It's been awesome. Now you know why I did not want to have to treat them. So that was done. But I didn't get any good news. He lost 2 pounds in 4 weeks. His Ped is pretty sure the reason he is not getting better (his runny nose ect.) and was going downhill was because his body was not getting enough calories again. I felt so awful. It seemed like he ate pretty good..but when I thought about it, I realized he would ask for lots of food but just took a bite or two of everything. So really he wasn't getting much food. So I have started doing a long feeding in the afternoons for like 4 hours and making his wear his backpack again. He doesn't mind and he is not in his booster chair for 5 feedings this way. He has an appt at the Feeding Clinic down at Primary's in 3 weeks. We'll see how he is doing then.

This is his tent with a tunnel that he got from Santa. He loved it once we coaxed him into the tunnel. He was scared at first, but loves it now.

Now for our sweet Kaitlyn. All in all she is doing good. She has had some things going on related to her prematurity. Her little system is just not maturing as fast as we would like. She has had pretty much straight diarhea for the last 4 weeks, spits up and projectile vomits alot. She was started on reflux meds about 4 weeks ago and that only helped slightly. She does weigh 7lb 9oz now and is 20 inches long. So she is growing and her Dr is pretty sure it's not something serious that we need to head to a specialist for. This week we switched her formula from the Similac Sensitive for Spit-up to Similac Alimentum. That is the hypo-allergenic kind... one step down from what Josh uses. And really expensive (try 25$ per can). Already she is improving with her diarhea and fussiness. But her spitting up is really bad. The old formula would thicken in her tummy and she would keep it down better. This new formula does not come in an option to have it thicken so she is pretty much puking left and right. She goes through several outfits, burp pads and blankets a day. The Dr had said he was more concerned about the diarhea than the puking, so we are addressing that first. Since it seems to be working, we will work on the spitting up next. Either adding another med, or changing the one she is on. At least things aren't going straight through her anymore. Hopefully these things will resolve in the next few months. But we have to follow the typical preemie rules and realize she might not 'catch up' for longer than that. At least we have been down this road before with Josh, so it's not so frightning for me. It's amazing how laid back I am about the puking. I just clean it up and move on. Sad thing for me to get used to, huh?

But she is doing pretty good otherwise. Scott and I have some concerns about her eyes, but we have waited to address them until her 2 month appt to give her some time. Hopefully nothing comes of that.

Here are some pictures of her from the last couple weeks.

These next pictures are of her and my neice Evelyn. They are 11 months apart. My sister bought this adorable onesie for her at the beginning of my pregnancy. It says "All mommy wants for Christmas is a Silent Night". So cute. She got the same one for Evelyn and we wanted to get pictures of them in their matching clothes. Evelyn was even so good for the pictures and let us sit Kaitlyn next to her and not hurt her. It was so fun to do this!!!! I am having so much fun with girl things and enjoying the difference this time around.

So there you go. Now you know why I have been MIA lately. It's been challenging, but I think I am finally able to get back into the swing of things and a new routine. I should be better about posting now that the kids are back at school and life is calmer (as calm as it gets for us here).

For those Near and Far

2010-12-04T20:49:00.006-07:00

I have many family members that live outside of Utah. Especially my sister who lives in Philly right now while her husband is going to Med School. So I am basically emptying my camera of pictures so I can keep everyone updated.

Sorry for the quality of pictures. My camera is really crappy and I can't get great ones. But some are better than none.

I am pretty sure there is a baby in there, right??

Since very few people besides Scott and I have seen Kaitlyn with her eyes open, I took advantage last night with her wide awake to grab some shots. Once again... they aren't the best quality.

I love the yawn pictures. I think babies are so cute when they yawn.

The hospital binky that she won't part with... takes up most her face.

I have been told by a my sister and sister-in-law that the pictures I have posted so far don't do her justice for how small she really is. So this is my attempt at some comparison shots of her with a couple household items. Maybe you can get the idea. She was laying on her changing table. Which is a standard size changing table pad.

This is our remote with her. (Sorry I came up blank with some good items to have next to her... forgive me.)

This is a standard folder that you can buy at the store for like 50cents or so.

And finally.....

I think the wrong person was sleeping in these pictures.... LOL!!!!

Pictures of Kaitlyn

2010-11-30T11:16:00.003-07:00

So it took me a little longer than I thought, but I finally got the pictures of Kaitlyn on here.

It's been almost 48hours since we brought her home. Things have been going very well and I can't tell you how nice it is to not be pregnant anymore, have her home with us and our family complete. We are just trying to adjust to having a newborn and balance everything else going on. But it is going very smoothly. Let's hope that continues on when Scott goes back to work next week.

Kaitlyn is doing great. She sleeps a lot, so that has made it easier. She has only had a couple fussy times so far and they didn't last long at all. She is eating very well so I finally can breathe a sigh of relief on that one. She has a Doctor appt tomorrow so we'll see how much she has gained since saturday night.

The boys LOVE her to death. Especially Jordan. He begs and begs to hold her. I have gotten him to do extra things around the house just so he can hold her. (Hey, I am not above bribing!!!) Josh loves to look at her and signs baby constantly. He still has seemed surprised to see her when he wakes up or comes home from school. But he'll get used to it.

Enjoy the pictures!

(my sister got these pictures a couple hours after we brought her home. Adorable!)

Her first bath. In the NICU they only wipe them down with wipes. Of course because of her cord it was still more of a sponge bath, but we got her really clean finally.

I took this picture at 2am this morning. This is what I was looking at. A wide awake little girl. It took awhile of rocking for her to fall asleep. Usually she goes right back to sleep after she eats. She is so precious!!!

Guess who is home??

2010-11-28T21:57:00.002-07:00

Kaitlyn is HOME!!!!!!

I am so excited and happy that she is here. She did very well last night and ate a little more than the previous 24 hrs. She did everything the doctor wanted and was discharged this afternoon. She even gained an ounce! So the whole 5lb 7oz of her came home today. I have a few new pictures on my camera, but I am too tired to download them tonight. (Not only having her come home, but getting the kids all ready for the new school week. It's been crazy!!!!) I will update and post pictures of our sweet girl tomorrow.

Thanks to everyone who had kept tabs on us and prayed for her. That is why she is home exactly one week after her early debut in the world. Most babies 6 weeks early don't come home for at least 10 days. Go Kaitlyn!!!!!!

Update with Pictures and Video

2010-11-27T17:35:00.004-07:00

I finally got some good pictures and even some video of Kaitlyn today.

She is doing very well. We were hoping to bring her home today, but the Neonatalogist wanted to keep her one more day to monitor her eating. She is doing fantastic now, so I am very hopeful she will be discharged tomorrow.

Enjoy the pictures and video. If you have a hard time viewing the video, maybe hit refresh and try again. She is so adorable!!!!

And this is what happens to Daddy after an exhausting week. He has been super-dad this week doing it all. He fell asleep during the BYU/UTAH game this afternoon. Does that tell you how exhausted the poor guy is?? We love him!

Update and Pictures of Kaitlyn

2010-11-24T21:32:00.007-07:00

I am finally home from the hospital so here are the long awaited pictures!

First, an update on our sweet baby.

She is still doing well. Her Bili levels came up, so she is now being treated for jaundice under the lights. I think she is already looking better after several hours today. So that is very hopeful. We still aren't sure of the cause of her spitting/vomiting. She is now on another new formula called Similac Sensitive RS... meaning it has rice starch added to slightly thicken in. This is the 4th formula now. Crazy. She is still nippling about 21-24cc of her 35 cc minimum per feeding. It's good that she is still trying and still eating mostly by mouth. And her Oxygen levels are still great with no big de-satting during feeds. I am very happy with her progress and I hope she continues to improve each day.

Here are the pictures from her birth on that we have taken. I took a majority of them over the last day and a half. Scott was stuck home with a sick Trevor, so it has taken until now to get them home and downloaded. Hope you enjoy them!!

This one looks creepy of her under the lights. It looks like she is glowing or somthing.

Isn't she so sweet??????

Baby Kaitlyn is here!!!!

2010-11-23T06:18:00.002-07:00

I am so happy that Kaitlyn is here!

And for those of you wondering how it all happened. It's been a whirlwind, that's for sure!!

Saturday around 2pm, I started having some painful contractions. I have been having contractions for so long that I knew these were different. I had just been in to see my OB the day before and she told me that if I got painful ones that lasted for more than 2 hours to head into the hospital. Of course I don't want to go if I don't have to, so I waited and waited. Around 7pm I had enough pain going on and some other weird feelings that I figured I should just go in and get the shot to stop it all. So, I get in the car and drive over. (sorry for those of you I just realized don't know I live across the street from the hospital). I get there, checked in and put on the monitor. My contractions are actually every 1-2 minutes. They decide to give me a double dose of the meds I have already been taking for contractions. An hour later it was no better. So my nurse checked me and I was dialated to a 1+ and 30% effaced. So they then give me some Morphine to help with the pain and relax me. Then they bring in what they called was the Big Guns.... aka Terbutaline. It is now 10pm and I call my mom to come to the hospital because I no longer can drive myself home and I was sure I was still going to be able to go home. Then they check me again. I am now a 2+ and 70% effaced. Crap.... that was not going well. So they give me more meds, start an IV for fluids to see if that will help and we waited to see. The contractions never stopped, or even slowed down with multiple doses of meds. Around 2am they start referring to a c-section and I realize this really might be it and she is coming now. I took some Ambien to make me relax and they kept pumping me full of stuff. By 5am I am at a 3+ and 90% effaced. My nurse calls the NICU to give them a heads up since I am 34 weeks. It was really sinking in then that this was it. Around 8am they gave me one more big dose of the Terbutaline and said if things didn't improve in 45 min they were doing my C-Section at 10am.

So we welcomed Kaitlyn Margie Christensen at 10:19am. She was 6lb even and 19 inches long. I saw her from across the room, but never close up. We heard her cry and knew she was doing fairly well before they wisked her off to the NICU. My surgery was finished and I went to my room. We saw Dr. Berger, the Neonatologist about 11am. He came to let us know how she was doing and what the plan was. Since she was a preemie, she had typical preemie stuff. Her lungs weren't developed and they were doing a Surfactant Treatment to get her going. He told us they would do one treatment, draw labs to see how it worked, then would do as many treatments as needed. Josh needed 3 when he was born. She only ended up needing the one. I saw pictures of her from what Scott could take, but I was not able to get up and moving enough from the surgery to see her until 9pm that night. But I did get to hold her at that point and it made it all worth it!!!

She is doing amazing. There is no other way to describe it. Yesterday at 2pm she came off her oxygen already and hasn't needed any since. She also started feedings finally and has done very well with that. She is not perfect, but for being 6 weeks early she is doing well. She is sucking and swallowing and very interested in eating. She is still learning how to eat and coordinate everything, but I could not be happier at her progress.

Now, her biggest hurdle is going to be jaundice. I have not found out what her level is this morning, so I don't know if we are going to need to start light therapy or not. Jaundice is hard because it makes the babies too sleepy to eat and the only way to get rid of the bilirubin in their system is to eat and poop it out. So, we really hope we can avoid the vicious cycle of shutting down and having to do tube feedings. So far she is doing great, but preemies like to change in an instant on you. So we will be watching those blood levels very closely.

Dr. Berger told us when he came to see us right after delivery that we should expect a 10-14 day NICU stay. But we are hoping she will break the mold and come home sooner than that because she is doing so amazing.

Please keep her in your prayers that her little body can keep up and she can continue to do awesome. We really want her to come home soon.

Also I will post pictures on here tomorrow when I get home from the hospital. If anyone has Facebook, we do have pictures on there. She is so adorable and tiny. We are going to need preemie clothes and diapers.... something we didn't ever think we would need. I am just happy that all is well considering I could not make it to my 36 week mark.

Thanks for all the love and concern!!!! I will post again soon.

The never ending surprises

2010-11-16T21:19:00.003-07:00

I think our house is full of never-ending surprises. Most of them lately have not been exactly fun surprises though.

Josh has been full of unpredictability lately. He has had days where he eats nothing at all, and then he had two days in the last two weeks where he ate so much, we only did one feeding in the morning. I wish I could figure out what was behind it and jump on that wagon. But so far, I am not sure what triggered his healthy appetite, but Scott suggested it may be a growth spurt. Who knows!

And the little bugger pulled out his G-tube again tonight. At least he told us he had done it. Although he told Scott by pointing to his tummy and saying ow, and he ignored him. I got home about 5 min later and he did the same thing. I always look at his stomach, always, when he complains it hurts because things can go bad really fast. Sure enough... it was gone. Scott kinda freaked out, but I have to say for once I was really calm finally about it, and it didn't scare me like it has in the past. I am not sure if that is a good milestone or bad one for me to hit. LOL! But we grabbed his Emergency Kit, got a smaller catheter in first, then got his button back in. He whimpered a little, but didn't cry. So all is well. I just wish he would leave the thing alone!

Now for an update on baby news. Kaitlyn is still doing well. I have been doing Non-Stress Tests (NST) twice a week now to monitor her specifically. I always get hung up at the clinic because of contractions, but so far things are OK.

I did have another hospital visit this last saturday night. I caught my kids' cold last friday and started coughing really bad that night. By saturday morning all I did was cough...almost constantly. Then I coughed so hard I started to throw up. It just went downhill from there. Finally around 7pm after not keeping anything down for hours and throwing up my meds to keep my contractions under control, I realized I was going to have to go to the hospital. It was not a bad visit, only about 3 1/2 hours. I had IV fluids since I was really dehydrated, some injections for the contractions, some Zofran to settle my stomach, and some good cough meds with codeine to stop the cough. Once I was hydrated again, I felt alot better and the meds all helped as well. But even though that is under control, my cold has gotten worse. I just hope I can start on the upswing in the couple days. This cold is kicking my butt! I only need to make it 2 more weeks to the 'safe' point and it seems like I am barely eeking along. Sigh... what else is new?

So, that is how we are surviving. I am getting excited for Kaitlyn's arrival and I am finally completely ready. I am ready to be done with the pregnancy as well. Although I am getting more nervous about the C-section/tubal I am having and the recovery part. But I know it will all be OK.

I will keep everyone updated on how things are going. Thanks for all the help and prayers!

For those of you who may not believe me...

2010-11-03T13:57:00.003-06:00

Josh is not a good sleeper. Never has been. Which is why he has undergone sleep studies, numerous EEG's and ect. None of his doctors have been able to get a good idea of what is going on. He does see a Sleep Doctor that has prescribed him some Trazadone that he takes nightly to get us some hours of sleep.

So last night I was having a hard time sleeping and he was awake so I thought.... why don't I video the baby moniter to give you an idea of what goes on in our house every. single. night.

And yes, I even took a picture of our clock so you could see that this starts everynight between 1:30 and 2 am and goes on for a couple hours. Also this is why he will never be able to share a room with anyone.

The video isn't much to really 'look' at, since it's the sound of the video I want you to hear. I decided to focus on the baby moniter so you can see the pretty lights I see every night.

If you listen closely to this video you can hear thumping. That would be his head hitting the wall over and over. Awesome.

The only things that have come back with all his testing is 'inconclusive' on his EEG's and a 'wild and violent rocking sleeper". Nice huh? I wish there was an answer, or something else we could do, but for now this is just how life goes. The end.

~~~~Check out the next three new posts I did. 4 posts in one day! I should get a gold star!~~~~

Do you want to have a Heart Attack???

2010-11-03T13:50:00.002-06:00

Well watch this video then.

And yes, Scott was taking the video and encouraging this. Enough said.

Halloween

2010-11-03T13:40:00.003-06:00

I was not the fun mom this year for Halloween so I didn't get much pictures, nor did we do all that much celebrating. Kinda hard at 8 month prego to do all that.

I only got these 4 pictures. Sad, huh?

This is my neice, Aliyah as Dorothy and my nephew Jarron as Darth Vader.
Trevor was supposed to be a Roman Soldier, but refused to put his costume on after all, so now he was claiming to be a baseball player since he was wearing his jersey from baseball already. Clever huh? Jordan was a Duck Hunter to be just like Dad (I know, big surprise!) Josh is having some major sensory issues right now, so we skipped the costume all together and just got him a Halloween shirt. Worked for me!

These are my two newest twin neices and brother in law Jeremy. Cambrie and Andie were dressed as M&M's. So cute!!!

Andie was the blue M&M and Cambrie was the green one.

Next year I will be so much more on the ball!

What's in my camera??

2010-11-03T13:32:00.003-06:00

I decided to empty out my camera and post a couple pictures.

Trevor is the photographer of all of these pictures. He has suddenly become the family historian I think, and takes pictures more than me. I guess it's good though!!

Here is what he made at Cub Scout's last week. It's called a Graveyard. He was very proud of it and requested I post pictures on the blog.

And in case you wonder what happens when we try to feed Josh, here is what he does.

Puts things on his head (heaven forbid his mouth).

Or dumps it out on the tray and floor and wears his bowls on his head. Mmmm... probably not the progress his doctors want to see.

Enjoy!

I am still here!!!

2010-10-28T14:02:00.002-06:00

It seems like everytime I sit down and even think about doing a blog post.... something happens and I get distracted. Plus, since my iTouch has Wi-Fi on it, I do most internet things, checking blogs, ect. while resting on my couch or laying down. Since I have not figured out how to post from it yet... I keep getting behind.

So, just in case you are wondering about how we are surviving........

Me. I am stable. That is the best way to describe it. The contractions are staying under control as long as I don't lapse in my meds or do too much activity. It is so hard to believe I have been on meds for 11 weeks now. That seems like so long to me! I really can't wait to be done with the ProCardia. It causes migraines and nausea, and occasionally dizziness. I am taking another med now to counter-act the headaches and ect so I can function. But that medicine makes me really out of it. But my head doesn't hurt and I can eat. So it's like a double edge sword with meds right now. I just am so glad this is all pregnancy related and I get to stop taking everything once Kaitlyn in born. But on the other hand, my sugars are still doing well and I have not had to increase any insulin in over 4 weeks. So that is great news! I am also trying to get over a bad sinus infection I got with the cold I caught 3 weeks ago. I lost my hearing a couple nights ago and got vertigo (where you are so dizzy you vomit constantly). It was not fun. I went to the doctor the next morning and I have a sinus infection, one ear slightly infected and my other eardrum had ruptured. So it may take a couple more days to get my hearing back to normal. But I am already feeling a bit better today, so I think the antibiotics will work. I just hate getting sick while pregnant. You never know what is something that needs to be treated, or just let run it's course.

And Kaitlyn is doing great. So far every ultrasound (I have one every appt) has been amazing and she is developing well. She was about 3 1/2 pounds last week. Her head is measuring just about average, which was one of my biggest concerns because of Josh. She is most definitely a girl, Dr. Julia told me she rarely gets that good of a look so she can say with 100% confidence. Which is good because my house is getting more and more pink in it. And my sister is throwing me a GIRL baby shower next week (something I never thought I would get!!!!). It's going to be so much fun. The boys don't really have a clue what is going to happen, but they tell me daily they just want her out. I don't think it is because they are that excited to meet her, but they are tired of all the restrictions and stuff on me that has effected them. But they are all troopers and are dealing with it pretty good.

Now the kids. All 3 are doing good right now (knock on wood). School is going well for all 3 of them and we seem to have a nice routine now that runs smoothly. Makes the world of difference when things aren't so hectic.

I will hopefully get to post some Halloween pictures in a couple days. My kids are very low key this year due to Trevor and Josh not liking to dress up and me having a hard time shopping anyway. But it's all good and they are happy.

How fast things change

2010-10-13T21:27:00.004-06:00

~~Before you read this, scroll to the bottom and turn off the music~~

So updating my blog has taken a backseat... I'm sorry!!! But given the pregnancy issues going on, I am sure everyone will understand!

Just to start this update off..... and for those of you who don't know..... I did indeed get to have my first trip to the hospital for contractions last saturday night. I have been having them for weeks now, but they were every 3 min or so and after a day of meds, hadn't slowed down. I was also not feeling well which I knew could be possible pregnancy complications. I went in, they monitored me for a bit, gave me a shot, took labs and since I have an AWESOME doctor, I was able to come home after 4 hours. I just have to take the meds every 4 hours round the clock now for the rest of the pregnancy and be even more careful (is that possible???). So all in all.... it wasn't too bad I just needed an extra boost to get things back under control. I really hope this isn't a forewarning of what is to come... but who knows. Other than that things are stable for me.

OK... now THAT is all over with.... here is a big update on our little guy. It's been a busy week for him with big appointments. But first.... pictures!!!!

These pictures are funny. Believe me. If you know Josh, you know he HATES blankets of any kind. He has not had a blanket in his crib or his bed now since he learned how to throw them out. He doesn't sit under them or even care to have them around. But Trevor on the other hand likes nothing more than to tightly wrap his entire body in a blanket. He has been doing his daily reading alot while under his blanket on our couch. A couple weeks ago, out of the blue Josh just started dragging this blanket out and using it while he reads books. It is so funny to see him copying his brothers. Makes me smile!!!

I really hope this video works (since I can't tell until I publish the post). It was the other night when Scott was getting his nightly G-tube stuff/meds/jammies done. All Scott was doing was sitting there looking at Josh. He wasn't making faces... just starting at him. It is rare we hear Josh laugh like this. I grabbed the camera because it was so cute. Enjoy!

Now for the appointments. Yesterday Josh had a routine appt with Dr. O'Gorman, his GI doc down at Primary Children's. There have been many appointments we go into knowing that there is multiple things to talk about. This was actually a quick appt for Josh and I loved that. He is doing very well from a Health standpoint. His height and weight are right at target now, he is on the charts and looks awesome. I already knew that, but it's still nice to hear. For once this was not our biggest concern area. Should mark the calendar on that one. LOL! But..... as usual there is always something that has to be figured out. This time it's his worsening (to put it mildly) constipation issues we have going on. He holds his stomach alot and says 'owie' and cries. He doesn't poop for days, when he does it is completely awful. So I didn't know what the answer was going to be... but something has to change. Dr. Molly (that's what she has the kids call her) had a resident and another dr in training all come in the room to get opinions. (love having THAT kid). She doesn't want to increase any meds (he is on 5 for constipation), but she is pretty concerned. She has been his doctor for 2 years now. She flat out told me she was really thinking by this time we would be weaning meds, not upping doses. So after a lengthy and in-depth conversation about the foods he IS willing to eat by mouth, she has a hunch. He eats a lot of carbs. Since he has been eating more by mouth over the last 2-3 months and that is when things got worse... she is concerned his body can't process carbs. I guess there is a couple disorders for that, but they are hard to diagnose. So since she doesn't want to totally rock the boat right now, we decided on a plan to see what we can do about it. Every 3-4 days we are going to have him go NPO (no food or drink by mouth) and do only G-tube feeds with his special formula and see if we notice any improvement. If we do.... we add more NPO days to see what happens. She does not want to make him NPO all the time, but at the same time is also worried about long lasting damage/results of this constipation. I have to agree.. he IS only 3!!! So that is our new plan. We did double one med dose, but that was it for now. She just doesn't want to increase any more meds since he is on 13 meds a day for all his problems. I will have to see how this is all going to play out.

Now for his appointment today. He had an appt with Dr. Winters who is a Developmental Pediatrician with 'Children with Special Health Care Needs' (CSHCN). She is an awesome doctor and it was a GREAT appointment. We only saw her once before, last september so I wasn't sure how today would go. This was supposedly going to be yearly appts. Not so anymore. We discussed everything under the sun about Josh...from health concerns, developmental concerns to ways to keep him healthy. The only bad thing today at all was the fact that we go mis-info on a previous diagnosis for Josh. We were told Josh's Angelman Syndrome test came back positive, and today found out it was negative. She even called down to Salt Lake and talked to Josh's Genetics Dr. to confirm it was negative. Some nurse screwed up royally (but we don't get into it). I went into the appt with an actual list of things that I am concerned about behavior wise with Josh. Since he is complex with multiple things going on, I wondered if the struggles we have are just part of what he already has, or have we missed something. Josh has steadily gotten very, um.... how do I put this nicely?? ..........WILD and crazy. He is very all over the place, never focusing, always moving, climbing things unsafely, making messes, unwilling to sit with people, yada yada yada. I know most parents always think there child is the worst one out there at times, but I really wondered how several months ago (and granted he was sick and not full of energy) he was a mellow, easy going kid who was semi-calm..... to this WILD and out of control boy who I literally can't keep up with anymore. Where did my Josh go? He is head banging, hitting himself, throwing things, into everything under the sun, climbing on everything he can and usually falling because he is not coordinated enough, hyper-active (putting it mildly), won't sit at all, ect. I know 3 year olds are active. But this?? I really was thinking something was going on, but had to idea if it was sensory or not. After a long talk (like an hour and half!!) with Dr. Winters, and her asking all sorts of odd questions she finally sat back and told me I was not crazy, he is a handful and a half, and probably too much for me to be handling right now. I thought I was just being a wimp! She then told me what has completely surprised me in a way, but also made me so excited that my mommy instinct was once again right. Josh has ADHD. He is at high risk for it with his neurological problems anyway, but she told me she is 100% confident we will get this diagnosis at some point soon. Most doctors are very hesitant to even consider ADHD in a 3 year old, but she told me there couldn't be a more textbook case than Josh. He has all the risks factors for it, and all the signs for diagnosis. It totally made sense to me though. I have blamed some of his hyperness and behavior issues on his being developmentally delayed. But lately..... I am just in over my head. I can't even look away from him and he is into, onto, or under something so fast I can't even waddle over fast enough to stop him. I haven't been very vocal about how hard things have gotten with him, but it has. And now I know why. Now I know I am not crazy and wimpy, that even Dr. Winters told me she can't imagine how my family is holding up with him right now, and that there is something else going on, without a doubt. But...... what do you do with a 3 year old who has ADHD? Our plan for now is to go back to see her the end of january and if things have not improved with his hyperness and lack of attention, we are going to look at some meds for him. She thinks he might be able to pick up on speech and develop the language skills a bit faster if he could focus. I guess it really could be impeding his learning. Sad that I didn't realize this. But once again... the sooner we get treatment, the better off he will be. We learned that with Trevor and autism, and I will do what it takes for Josh now too. He is going to start back up with Occupational Therapy and Speech through the Primary Children's rehab, since he is not doing therapy (oops!) right now other than what they do at school. I dropped the ball on that one and after being told by two doctors in two days that I should not have let him have the summer off (and part of fall now too..) I am feeling that big mommy guilt. I just was enjoying not running to therapy for him too. I already am doing in weekly for Trevor... I just was not up to doing it yet. But I realize it is important and I need to get him back in as soon as possible. And we'll get there.

So.... now that this update is really long.... I am done. Josh just keeps me on my toes constantly. Literally actually. It's kind of hard to be on 'bed rest' or 'scheduled resting' and keep up with him. There is no sitting around when he is awake. I am just glad there isn't a lot of times I am alone with him because of school and naps. I just need to make it about 8 more weeks and then heal up from the C-section and I will be good to chase him all day long. Hopefully. LOL!

Where Have I Been?

2010-09-26T11:30:00.003-06:00

I know a few people have wondered about me and what is going on. I haven't been blogging like normal, and I am not on Facebook as much. I thought I would explain why.

To say that my life feels like chaos is an understatement. My goal right now is just to get it to a point of 'organized chaos'. LOL.

I will tell you what is going on with each kid, and maybe you will understand.

Trevor. He is doing well. He likes school (hallelujah!!) and we haven't had an serious problems in the morning getting him ready. My biggest hurdle right now is doing homework with Trevor. He goes to school and does so good (for him) with keeping it together and focusing, that the last thing he wants to do is come home and do more homework. His homework should take about 20 min..... but it really takes us about 2 hours each night. And this in one-on-one. Either Scott or I have to be sitting right with him and keep reminding him of what he is doing, listening to his excuses, and fighting him. It is very emotionally draining. But we have at least moved past the meltdowns of doing homework. His IEP is due and we are in the process of coming up with solutions for what is going on. The latest thing we are trying, and what seems to be the best so far, is letting him have from after school until dinner as free time to do what he wants. Then as soon as dinner is over, we start homework at 6:30 and he works for an hour. What he gets done in his hour is all he has to do, and it won't count against him to not finish. He does not know that though... so we push him to do as much as possible. And it works better for me because I can still get dinner ready on time and deal with Josh. Fun times. Then you add in his new weekly therapy group that he just started. He goes from 3:30-5 every wednesday. I take him (as well at the carpool kids) straight from school to WHS in Ogden. Then Scott picks him up on his way home from work. It works good so far and Trevor seems to like it. We are only having to do monthly one-on-one with his therapist now that we added the group therapy, so it cuts down on the amount of school he will miss. Then you also add Scouts, and he is a busy boy! He has weekly den meetings and of course pack meeting monthly. It amazes me how busy kids can get at this young age. So... now you see how busy he keeps me, from the time we pick him up until bedtime. We are struggling more with 'autism' related things going on, and so it's been hard to get a good routine going for him, which he desperately needs. I am close though to having something working.

Now for Jordan...he is doing great as well. 1st grade has been a change for him, but he has done well. He loves school, and just occasionally complains about how long it is. He also has nightly homework, usually Math and Phonics. He is easier to do homework with by far. He can usually do it with just me around to answer questions. I have him doing homework from 4:45-5:30 now so we don't have two kids doing homework at once. That was not working at all. Scott does a majority of homework with the kids, since I am usually trying to get dinner going to keep on our schedule. Jordan also plays soccer right now so tuesday nights he has practice and saturday mornings he has games. It gets crazy around here.

Now Josh. He is also doing well in general. Right now he has caught a cold and is not doing so hot. He got really dehydrated because he shut down with eating and drinking. I have him on his pump with pedialyte every hour he is awake. I am already noticing a bit of a difference in him, so I think we are on the right track. It just reminds me again how fragile he is. One cold can cause some huge setbacks. I don't know if he has lost weight, but I would guess he has. He has a GI appt down at PCMC in two weeks, so I hope to get him in a better place by then or else they will make us start doing more feedings again. I am a bit nervous about it. It has been really nice just doing 4-5 feedings a day and him not wearing his backpack anymore. I really, really don't want to go back to that ever again. He has a few routine appts coming up in October and things will get even busier for me. I will keep you updated on how things go with those.

Now for me. I hate to admit this, but I am one of the biggest problems going on right now. Between having contractions alot, doing scheduled resting, ect. some days it seems like a no win situation. I am very frustrated right now because I can't do what I want do to, but yet again, I do take on more than I can probably safely handle right now because I have no other choice. Scott has really stepped it up with being helpful and doing as much as he can, but he does go to work so I have to do stuff while he is gone. Nighttimes are crazy as you can probably imagine. Keeping on a good routine for Trevor and Josh, doing homework for 2 kids, dealing with Josh and his 2yr old 'activities' (aka, naughtiness), getting dinner done, cleaned up, packing two kids backpacks and remembering to sign everyone's homework, packing two kids' lunches, Josh's backpack, doing Josh's meds every night and getting them all to bed on time is not something one person can do. It is literally impossible. And my days are not any better. I spend my morning while Josh is at school doing my own doctor appts, dentist appts, pharmacy runs, shopping, therapy for Trevor, and then occasionally Josh's appt too....it gets crazy. I pick up the carpool every afternoon as well. So if you have any ideas on where I can fit in scheduled resting.... let me know. I am not finding it very easily. Of course when the contractions hit, or I have bad pain, I have to take a break right then and hope I can catch up later. I just really hope I can make it to thanksgiving. I have been more stressed than ever.... just trying to keep on top of things and trying to keep the strict routine that Trevor needs, making sure Josh is getting his meds 4 times a day and counting calories for him, the stress of what is going on with me and the baby is not helping any. I am just so glad that everything I have going on is pregnancy related and when she is born, it will all go away. At least I will feel better and be able to do more without worrying. Although trying to figure out how this sweet baby girl is going to fit into all this is beyond me right now. I know it will all work out, but getting there is not easy.

So, I am not on the computer like I used to be, and I feel so disconnected to everyone. I hate this feeling, but I do think it will get better soon. I think we have about figured out a good schedule for after school for the kids to let us get everything done that needs to be done in an organized manner. That will help tremendously. But if anyone else has any suggestions, let me know. I am always up for ways to make things better.

Whew! That was a lot longer of a post than I intended. Sorry! And please don't take this as a feel sorry for me post either. That is not at all what I want. I just am being honest and letting everyone get a glimpse into the life of raising two kids with special needs and how that impacts everyday life. As I have always said, we don't know any different and we love our kids. That is all I have to say.

Soccer

2010-09-11T12:03:00.003-06:00

Jordan started AYSO soccer a couple weeks ago and today was his first game. It's alot different than city soccer, since they keep score, have stricter rules and all games count.

Here is a couple shots of him before his first practice a couple weeks ago. He was so proud. And yes....we finally did get him to put his shin gaurds on the inside of his socks for his game today. LOL!

With Trevor being sick (he has had a staff infection in one of the glands in his neck), both of us had to stay home today. But Scott was awesome and still took Josh to the game. He loved it apparently. Here he is hangin' out.

And this is when he finally gave in and changed his socks to be over his shin gaurds. Silly kid.

And the rest of these are from the game. Since I was not there I am not sure what exactly is going on... but it's 6 year olds.... so I am sure it was a little choas.

His team did great and won the game 7-2. Jordan scored 2 of the goals. We are so proud of him!

Baby Update

2010-09-04T16:42:00.002-06:00

I have actually needed to post for two days, but I am trying to be good and follow all my doctors orders :)

I had a OB appt on thursday morning. Things were not going my way from the get-go when my blood pressure was slightly high. Darn. Then when Julia (my OB) came into the room the first thing she said was that my Endocrinologist had faxed her 3 reports in two weeks about his concerns over my fasting sugars. She informed me that she very rarely gets any reports from Endocrin on her patients once she sends them. She told me she can't help me there, but just to follow what the doctor says. She knows I am, so it was more of a obligation to tell me than anything. After she did an ultrasound and found the baby to be doing great, measuring right on track, we talked about some possibilities of what might be going on. I have had some recent sudden swelling going on, and with that and my blood pressure slightly raised now, there is a concern for PIH, Pre-eclampsia... ect developing. Since I had it with Trevor, started to when I delivered Josh, the risk is quite high. So I have to take my blood pressure twice daily and if I have any sudden bad headaches hit or am feeling particularly crappy I also have to take it and if it's more than 140/90 I am heading to the hospital. Then I had a NST done to see how many contractions I had in an hour. I had too many for her to be comfortable with. So she started me on some meds to stop contractions, put me on semi bed rest until monday and we will see if that helps. If it does, I will just go on scheduled resting for the remainder of the pregnancy and take meds. If not... we will increase/change meds and I will have to go on more strict bed rest for the remaining of the pregnancy. So obviously I hope for the first option. I am really glad to hear that Kaitlyn is doing well though and isn't too big or two small. Since I am only 23w 5 days.... it is not a good sign.

I have tried my hardest to follow what she says and I think considering I have three active children, one requiring alot of support, I am doing alright. It's just frustrating. I look at all the pregnant women I know and I just wonder why I can't just have a complication-free pregnancy.

As I have been thinking the last couple weeks and stressing a bit over how this is all going to work out, I have to share something with you. When I found out I was pregnant, I was worried, stressed and not very excited right at first. Now... most people would think it was because we had not planned on any more kids, we had gotten rid of all our baby things, Josh requires alot of time, or how would we do it all. Let me tell you all of that was furthest from the truth. My worry was about how I was going to survive being pregnant with the problems I always have and keep my family life together. I was worried about whether I would have preterm labor problems and if I would deliver another preemie that would spend the first days of it's life in the NICU hooked up to tubes and wires. I worried about having a micro-preemie that would spend months in the hospital and problems the rest of it's life. I just wonder if I can handle that. At this point... not having baby stuff, not planning on having any more kids, not being ready financially feels like a something very minor to me. I know that Heavenly Father will take care of us and somehow all of that will fall into place. And it has. I have to thank everyone who has given us things for Kaitlyn. It has truly been a miracle how things have all came together for us. I am still really apprehensive about what the future holds and far as Kaitlyn and my health is concerned and I am trying to have the faith that everything will work out according to Heavenly Father's plan. Some days it's harder to remember that, but I am getting better.

So.. that is where we are with the pregnancy. I have not been on blogger or Facebook much lately so I feel so out of touch. I hope that after this weekend I can get more into the swing of things (safely) and be able to connect with everyone. Here's to hoping!

How we survived

2010-08-30T12:07:00.002-06:00

Well the first week of school has come and gone.... even if it was only 3 days long...... and we survived! LOL!

Trevor did very well with all the new changes. Things still are not totally in place for him, but he is still doing better than I thought. He has a great teacher though, and I am utterly thrilled!!! He really likes her and says there are some funny kids in his class. That is about as positive as you can get with him. I hope in the next couple weeks we can get everything with his IEP in place and I can breathe a sigh of relief.

Jordan is doing good too. His biggest complaint? School is too long. LOL! I warned him that it's not anything like Kindergarten, but I think he had no idea what I was talking about until now. He is going to do fine though. He has already invited a friend from school to go Duck Hunting with him. I am not worried about him at all.

Josh. What to say about this one? He did awesome!! He loves school and even though he has only gone once last week and now today, his teacher said he was so good. The only thing she keeps saying to me is that he goes 110 mph and she has no idea how we keep up with him all the time. I told her I wonder that too. I wish she could see how much different he is now than he was a few months ago. If she only knew how lethargic and the lack of energy he has had in the past, she would be thrilled for us too. Sometimes I just wish people could see how much support it takes to keep him going. If they saw the 6 big boxes of supplies that come from Apria HealthCare every month, or the 6-8 times a month I go to the pharmacy every month to fill his meds, or even see 4 baskets lined on my counter for the 4 times a day he has to have meds, or the amount of bottles of formula I still make, or the stressing I go through daily counting calories for him....... and that is just to start with. He takes alot of behind the scenes support to keep him well and doing as good as he is. And we know all too well if any of this stuff slips, so does he. I am very happy that he is doing well, don't get me wrong. It's just sometimes it can be exhausting.

Now onto Scott.... he is finally getting better. He has been pretty sick for the last week and it's been hard on all of us. He has not felt well enough to play with the kids, or help me out much. So it is sooo good to have him back. I missed him!

And now for me and the pregnancy. I had another Endocrinology appt last friday. My fasting blood sugars are still high and it's liver related. Before he upps my insulin again I am doing a couple things at night to try and trick my liver. So far though, it hasn't helped. I might have to have some liver testing done soon. I have been having contractions as well. I think (well really hope) it was just because I was doing so much and going 100 mph last week. Scott wasn't able to help me so I was incredibly busy. I had to take Josh to school, take the kids to school, pick up the kids from school, do homework, lunches, bedtime routine, meds, ect. So I am looking forward to this week with Scott feeling better and able to do alot more. I am driving a carpool so I am adjusting my daily schedule to accommodate everything I have going on. My kids get picked up mon-thursday, Josh rides the bus mon, tues and thursday to school. I pick up the kids from school mon-thursday and then I take them on friday mornings as well as Josh. It is taking some time to get used to the carpooling schedule, but I am very happy with it and it is going to work great. I just hope that with what happened this weekend, I will be able to drive the carpool up until the baby comes. We'll have to see about that. I have an OB appt this thursday so if I can make it until then without having some bad contractions, I will see what she thinks, or if she is going to make me start taking meds. I just wanted everything to go very smoothly. Is it too much to ask??

So that is how our week went. I am so happy to have some time to just relax now that they are back in school and I know in the next coming weeks, things will just keep getting smoother. It's always rough to adjust to a new school year. I will keep the blog updated though!

Josh's First Day!

2010-08-26T13:24:00.002-06:00

As I promised in my post yesterday for Jordan and Trevor's first day of school..... it is Josh's turn today.

So what does he get to do on the eve of his first day of school?

Spend time hooked up to machines! Aren't you jealous? He does his last feeding of the day right before bed, but now we have added back nebulizer treatments as well. Scott and Trevor are sick right now (hence why Scott looks sick) and so it begins..... the steps we take to try to prevent Josh from getting sick, and for his lungs to stay healthy.

Believe it or not, he was smiling in this picture. He just looks really drugged..... well because he was! Thank you Trazadone!

Here is my sweet boy this morning before we left. He was so excited to take his picture. I was amazed at how well he did.

When I picked him up from school his teacher, Miss Lonah, said he did awesome and didn't cry once. She did say he went about 110 mph the whole time and asked me how I keep up with him. I laughed. She has no idea.

We are all still adjusting to the new school schedule and trying to make everything work. It's so nice to have some structure going on for Trevor though. We both needed it.

I will do another post in a couple days to update on how school is going.

It finally started!!

2010-08-25T12:13:00.004-06:00

School started today!!! WAHOOOOO!!!!!!!!! (no I am not THAT excited.)

Here are Trevor and Jordan on their first day of 1st and 3rd grade. Can you believe they are that old? Time sure does fly.

As I have already said before the kids are attending Good Foundations Academy, a charter school, this year. It's a brand new school and we are so excited to be able to have this chance. Since it is a new school, they did some special stuff this morning. They had Hill Air Force Base come do the Flag Ceremony, did a Ribbon-Cutting Ceremony with the Mayer of Riverdale and had police there. It was pretty cool.

This is how crowded it has been. Absolutely nuts!

This is the guy who was the driving force behind getting this school going. He gave a little talk this morning and I learned even more about how this school came about. Pretty interesting.

And of course... cutting the ribbon. While we were waiting for this to all start this morning, Trevor and Jordan could not get over how big the scissors were that they used. It was pretty funny.

And finally, as a little sidenote, I had to post a picture of Trevor's fish he caught at the Fish Farm with cub scouts on monday. He was so proud of his fish and even took this picture with my camera and took it to my mom's house to show it off. Made me giggle a little. So funny.

I will do a post tomorrow about Josh's first day of school. Can you believe my baby is going to preschool tomorrow? I can't!!!!

What we have been doing....

2010-08-15T01:18:00.002-06:00

***Warning: May be a long post!******

I have been meaning to get this post done for about three days... but finally took the pictures and got it up tonight.

Here is some things that have been going on in our house.

First, we got a new Fish Tank. We had a 1.5 gallon tank with one fish in it. The pump/filter stopped working. Scott and I debated on whether to buy a 12 dollar pump for a 15 dollar fish tank for a few days. Finally we decided since Josh loves

fish so much, we upgraded to a 10 gallon tank and got more fish. Needless to say it has has been a hit and we see the 'fish' sign hundreds of times a day. It's been kinda fun for Scott and I. We have had to learn things about actual fish tanks, since they are much more involved than a tiny 1 gallon tank. But we are happy with it and it's been worth it.

So here is our tank. We have a Zebra Fish, 2 Red-Tailed Guppies, 3 Yellow Guppies and a Sucker Fish (Plecostamus).

This picture is blurry, but I was trying to get a picture of some of the fish. It's like taking pictures of kids... they never stop moving. LOL!

And now... the even bigger projects I have been doing.

After my last ultrasound that confirmed we were indeed having a girl, I have gotten started on the preparations. Both my sisters, Amy and Chantel, were so amazingly nice to offer me their baby clothes. Since we had to buy so many big items, I was willing to take all the help I could get. The clothes are adorable and I have had so much fun getting them ready. Here is what we have going on so far:

Here is her crib. The bedding is from my cousin, who lives in Kansas by the way. She shipped it out with her parents a few weeks ago and it made it's way to me. I was so excited to have it since it saved me lot's of money. Scott loves it alot since it's not pink. LOL.

Since Kaitlyn doesn't have a bedroom yet, her clothes are having to go into storage drawers. Good thing she won't care. Here is one with just newborn and 0-3 month size clothes.

Here is the drawers on the changing table that have onesies, hats and little things like that.

One more drawer cart that has burp cloths, socks and adorable shoes.

And here is Scott's amazing solution. I was trying to think of a way to not have to use the drawers in the changing table for things like diapers, wipes, lotion, ect. Since space for her stuff is at a premium. As we were wondering through the store a few nights ago, he went into a different aisle and came back with this to hang on the side of the changing table. Wahoo!!! Problem solved. Thanks Scott... you are helping me sooo much.

I bought her carseat last month, but just bought a cute pink carseat cover to keep her warm and dry when she is born. SO much fun!!! And here is also the bouncer that my friend Melissa gave to us. It's adorable as well.

And lastly... the swing. We can't survive without one of those! My friend Melissa gave that to me as well. She bought it for her son who hated it and so it didn't get used much. I am sure we will change that.

So between getting going on the baby stuff, getting ready for school... it has been absolutely crazy!!!

The week I had a dentist appt that did not go great and so I am looking at multiple appointments to solve the problem. I am very sore, but I had so much to get done I had a hard time finishing everything.

Trevor and Jordan's bedroom has been completely de-junked and all their too small clothes are finally packed away. Their school uniforms are washed and hanging in their closets. It was a half day project, but is DONE!!

Today was Josh's room. I bagged up two kitchen garbage bags full of clothes that are too small for him. My baby is getting so big!!!! I can't believe he has grown out of so many clothes. Granted a lot of them were 18 mos size and he is 3 after all. But I have bought him some new clothes for preschool this fall and I got those all ready to go.

So I think we are officially ready for school to start on the 25th. I am excited and can't wait to get back into the routine of it. I know it's going to be a tough year with the kids going to a new school, me being pregnant, soccer starting soon, and ect. But I am ready for it and the kids really need it. We will be fitting in weekly therapy for Trevor and Josh, Scouts, and endless dr. appt (for me and Josh). But I think it will just make the pregnancy go by that much faster. Wish me luck in surviving it all!!

Ultrasound and Baby news

2010-08-04T16:26:00.003-06:00

I had my Targeted Ultrasound yesterday. That is where they do all the measurements, check the heart, make sure there aren't any problems ect. Everything looks perfect! The best news I can hear! I did ask specifically about the head size with the history Josh has with microcephaly.

And.....it is a girl for sure! I think even though I was told that last time it was a girl, I was still afraid it could change.

So it looks like I can breath a sigh of relief and get to planning!! We are going to name her Kaitlyn Margie Christensen. Her middle name is after Scott's Grandma. She is an amazing women and it will be such an honor to use her name.

That being said..... the pregnancy is going about how I figured, with some minor bumps along the way. When I went in today for my regular appointment, my blood pressure was 98/45. So a bit low. For now she thinks it is just the way my body is responding to the diabetes and sugar problems. I sure hope so. I get dizzy so much... not just a little, but like knock me off my feet and throw up. I am just going to watch the dizziness and other stuff and go back in if it gets worse. She'll just monitor it for now.

I saw the Endocrinologist last friday. He started me on insulin twice a day. At night I take a long acting to help with the fasting sugars, and just a short acting with breakfast since my morning ones were higher. But he did blood work and found I am way under doing the carb eating... I need to have 45 per meal and 15 per snack. So I started doing that and emailed him the results monday night. Big surprise that once I started eating more carbs (I was really cutting them out before because of the fear of high sugars), they skyrocketed. So now I added insulin for all meals and upped the insulin I was taking already. So far.... still high. I remember with Josh we never really got the fasting sugars in a great place. It has something to do with your liver producing sugars at night while you sleep and your body not using them since you are resting. Nothing I have any control over.

So it looks like for now..... the rollercoaster of blood testing and insulin is going wild. I hope by next week to have it going better. I will email him on friday with my last few days of levels and we'll go from there. I am just glad that I can do this by email and not keep having to go back. Small blessings.

As soon as I can get the pictures to scan from my ultrasound yesterday, I will get them posted.

Not dodging the bullet this time either....

2010-07-25T21:42:00.002-06:00

I found out this week that my Gestational Diabetes is back. I knew it would, but part of me still was hoping I could dodge the bullet. I did the 3 hour Glucose test this past wednesday and got the results on thursday. I have my monitor now and am checking it at home. My OB has been out of town, so now that she will be back this week, I will get an appointment with an Endocrinologist. I am sure it will be Insulin again this time. Especially since I have been already watching my carbs and being careful and am only 18 weeks. I still have awhile to go. Let the good times begin!!!!!

Meet my new neices!!

2010-07-22T14:00:00.002-06:00

I finally was able to meet my new nieces this past tuesday. Scott went to the hospital to see them, but since kids aren't allowed, I waited until they were home and settled in. They are soooo tiny and absolutely adorable!!

This is Andie Rae...she is the smaller one... weighed in at 5lb.

This is Cambrie Ann.... she was 6lbs.

And look at Scott hold two girls at once!!! I think he is really going to like having a girl this time around. I love it!

Feeding Clinic

2010-07-15T15:20:00.003-06:00

Yesterday was Josh's appointment down at Primary Children's with Dysphasia (Feeding) Clinic. For once it was an awesome appointment with no huge surprises, bad news or frustrating conversations. Go Josh!!!!

Josh is now in the 27% for weight and 29% for height. Perfect. Absolutely Perfect! But I did know that Josh was doing really well. He is happy, full of energy and has actually been well and not sick all the time. It is such a relief to hear that.

So since he is doing so well, now is the time for some big feeding changes. I am quite apprehensive about it, but know it will be good. I just hate to rock the boat when things are going so well. But it's time... I know. He had some med increases with his weight gain and that was really the only other thing we are doing. We are going to try to change him over to this drink called Splash that can replace his formula. It's different from anything we have ever tried before, it's fruit flavored (they have tropical, orange pineapple, grape) and it comes in a juice box. So far he has seemed to like it OK. Here's to hoping!!! He will go off continuous feeds (can I get a wahoo???) and do 5 bolus feeds a day. We will start with food first and what he doesn't eat will but put through his G-tube over a short amount of time.

I feel really good about all the changes and I am so incredibly happy to be in a place with him that we can make some major changes. It's just hard to think about what can happen if we push too hard or things go south. I just hope it will all work out well. But we have one amazing little boy, so that helps a great deal.

And on another side note, my sister-in-law had her twin girls yesterday!! Andie was 5lb 1 oz and Cambrie was 6 lbs. We are so happy for their expanding family!! Such beautiful girls too!

Hospital Nightmare

2010-07-10T09:42:00.002-06:00

We had quite the adventure on thursday. I took Josh down to Primary Children's to have a small problem with a front tooth fixed and a teeth cleaning. He did not cooperate at all when I took him in for his first visit. With his history the dentist did not feel comfortable doing IV sedation in the office and instead had us go to Primary's for it. He goes down there once a month to do things like this.

So it was supposed to be really routine, right? Oh no.... that just could not happen. We arrived around 9:45am and left the hospital around 8pm. Crazy. Insane. Never want to do that again.

So the reason for the long day? Josh had a reaction to the anesthesia this time. Most likely the Versed he was given. For those of you who don't know, alot of time they will give these kids a medicine called Versed to calm them down. It basically makes them lethargic and so they won't remember what happens. I have always declined it since Josh usually does well. For some reason thursday was a different story. He was really upset, would scream when the nurse would touch him, wouldn't get off my lap to play ect. So the anesthesiologist suggested some Versed. I agreed thinking it would be a good idea. Boy was I wrong! They gave it to him a little too early (it is supposed to be given 20 min before they go back to the OR) and about 10 min later, Josh was acting really funny. He seemed to be breathing harder than he should and was very out of it.. head rolling around ect. So I grabbed a nurse and they realized he had the medicine 23 min before. They brought out some monitors in the waiting room and hooked him up. His oxygen levels kept dropping to around 84% and the alarm kept going off. It was lovely. They took him back less than 10 min later. I went to the surgery waiting room. The procedure was scheduled to take an hour and a half. Thankfully I ran down to the cafeteria and got a snack. About an hour and a half later, the dentist came out to tell me that he was done and everything was fine, although more involved than he thought. No big deal. He told me that someone should be calling me within 15 min to go back to recovery with him. About 25 min later, I was starting to get this feeling that something was going on. A couple seconds later the receptionist called me to the desk to take a phone call. It was Josh's nurse from recovery. He was not waking up still and they were having to do some extra oxygen and stuff to keep him more stable. He told me he would call me again in 15 min with an update. This went on for an hour. Everytime they would say he was just having a hard time waking up and needed some supplemental oxygen. Finally they told me he was waking up and I could come back. When I went back to see him, I could hear him screaming before I even hit the recovery. Poor kid. He was out. of. control. there is not other way to put that. He was supposed to be keeping an O2 mask on, but was ripping it off faster than I could keep it on him. They moved him over to post-op and could hold him then. He calmed some and then suddenly just went back to sleep. His sats were dropping on and off down to the mid 70's. He would bounce back up pretty fast, but that is very unlike Josh. So anyway, we dealt with that for a few hours, as well as him throwing up. He was given Phenegren and Zofran to help with it, but he still threw up. A different doctor came and told me that they might need to admit him. I was a little freaked out. But then he said if he could maintain his sats above 90 with no help, for two hours we can go home. Thankfully from about 6-8pm Josh was a very good boy and we were finally released then.

It was the longest day ever. Scary and not fun. I don't ever want to do that again. The anesthesiologist is pretty sure it was the Versed that caused the problems since it was the only thing he had never had before. So needless to say we won't be doing that again. The end.

Baby Bump Update

2010-07-07T15:35:00.002-06:00

I had another OB appt today. I was desperate to find out if we are having a boy or girl since I have to buy everything this time around. Dr. Julia is pretty sure (but will confirm 100% on July 29th) that

IT'S

A

GIRL!!!!!!!!

How exciting is that??

Things look good, the baby is looking right on for 15 weeks and my blood clot is stable. I had to go have that looked at too. I do have a lot of pooling of blood going on in both legs now, which is another grand pregnancy complication that will just cause pain. The only solution is delivery. What fun I will have this pregnancy.

I will update obviously after my next appt, but until then.... we are really happy!

4th of July!!!

2010-07-04T18:42:00.004-06:00

**Don't forget to pause the music to view the videos**

Since yesterday was the 4th of July celebrations here in Utah, and we can't attend large firework shows... we did our own small one this year. We only did Sparklers with Josh since he does not like any fireworks at all. I was not sure how he would do and I wasn't really keen on the idea of him holding his own sparkler. But Scott was insistent he needed to do 'normal' things... so he let him. He was in heaven!!! He loved it. He did get two burns on his fingers, but he didn't care! Here are some pictures and video of our night.

This sad face is what happened when we were all done. He was not happy about that!!! So funny!

Enjoy the videos!!

What's in my camera?

2010-06-28T21:36:00.006-06:00

**** PICTURE OVERLOAD*****

I downloaded all my pictures in my camera and finally got them on here. We have been busy playing with my family that is all here from back East.

This is Pack Meeting last week. Trevor's Den did a skit that one of the other kids wrote. It was so cute!

Trevor earned his Bobcat!!!! He was so excited to be able to earn it and get the award at Pack Meeting. It's nice his dad is the Cub Master so he presented it to Trevor.

He doesn't look very happy here, but I promise he was excited. He just doesn't like being in front of people.

On saturday night was the annual South Ogden Days. We are lucky to live right behind the park so we can enjoy the fireworks from our backyard. Scott found an old box of sparklers and got them out for Trevor. We realized he has never done them before. He was nervous at first, but got the hang of it pretty fast. He loved it and has asked for more on the 4th of July.

Today most of my family and I went out to Antelope Island. It's been years since I was out there and when I was there I didn't do anything. So it was kinda interesting and I learned some things. Here are a bunch of pictures from it.

Visitors Center

Display of Brine Shrimp (that is harvested in the Great Salt Lake)

Great Salt Lake and the Marina.

This is a saddle at the Ranch House.

This is the old Ranch House.

And old Cellar.

A BunkHouse of some sort.

The Kitchen in the Ranch House.

The laundry room in the Ranch House.

Dining Room in the Ranch House.

The Living/Family Room in the Ranch House.

Horses in the Corral at the Ranch House. Josh loved them.

And the chicken coup at the Ranch House. Josh kept sticking his fingers through the chicken wire. About got his finger pecked off a couple times. Silly kid!

And after all that, I don't have any pictures of the Buffalo we saw. I was driving everything we saw them so I couldn't take pictures. Oh well.

It has been a blast and so amazing to have my family here from out of town. I haven't seen some of them for 6 years. And I haven't met 3 of my cousins kids. I am looking forward to our huge family reunion this saturday. I am sure I will have lot's of pictures!

*** Just a side note: The pregnancy is going good. My blood clot is stable and will be there the rest of the pregnancy. Other than the ton of restrictions I have, things are going as good as can be expected for me now. I have another appointment on July 7th and I hope she can tell me the gender. Wish me luck!

Baseball games and the Pregnancy scare

2010-06-17T20:32:00.003-06:00

Tonight was our last night of T-ball and Baseball. Technically last night would have been Trevor's last night, but the games got cancelled due to the weather. So they both played tonight. I got a couple pictures of Jordan (finally) and then some video of Jordan tonight, Trevor tonight and also Trevor on monday night. Enjoy!

Now for our pregnancy scare. I am not sure I guess if you would call it a scare, but it has sure scared me!

I woke up sunday morning with a pain in my leg. I have been pregnant 3 other times, so leg pains is nothing new. But this one felt different. I had a really bad headache on sunday so I spent most of the day in bed. Monday I woke up and my leg was hurting a little worse. Sometimes when I put weight on it, it would really hurt. I had a lot to do that day and then a birthday party for my sister that night and a Baseball game. By that night it was hurting pretty bad. I called my mom to see what she thought. She told me to call my OB the next morning. I got up that next morning and had to take Trevor to an appt with his psychologist. I decided to just see how it goes. I get home and after my mom called to ask if I had called... I gave in and called the nurses line. They immediately told me to come in for an ultrasound on my leg. I was a little annoyed since I had to take all three kids with me on such short notice. I was almost ready to bag it, but decided I needed to just make sure it was nothing. So I was very surprised to find out I have a blood clot in my leg. It's a good thing I did go in. Now I have some nice restrictions and I am at risk for more clots the rest of the pregnancy. Just what I wanted to know. I am going back tomorrow to have it checked again and see if I have to go on some blood thinners. Awesome. I will keep you posted.

Music and my Angel

2010-06-15T01:18:00.004-06:00

I made a change to my blog that you might already be noticing. I added music again. I used to have it on my blog, but took it off several months ago.

Let me tell you why it is here and hopefully you can take a second to listen to the first song I have on there.

Recently two of the blogs I read daily, with special needs kids, have passed away. There is nothing like seeing what a family is going through and how hard that must be to put your own life back in perspective. I have never met either Carter or Ben, but have been profoundly affected by their stories. I have done more soul searching than ever the last couple of weeks. I have found some great strength and peacefulness through music. I came across the song 'He's my Son' about 2 weeks ago. I have to be honest with you and tell you it got me. I was very teary eyed while I replayed it to really listen to the words. It's amazing. If you have some time.... please listen. You won't regret it.

Now.... I will finally let you all know what 'Angelman Syndrome' is. I will refer to it as AS... so I don't have to type it out several times.

Here is the medical version of Angelman's.

ALL AS kids have:

~Normal prenatal history and normal head circumference at birth
~Normal metabolic, hematologic and chemical laboratory profiles
~Structurally Normal Brain by MRI or CT
~Delayed attainment of developmental milestones without loss of skills.
~Speech Impairment with receptive language skills and nonverbal communication skills much higher than expressive
~Movement or balance disorder, usually ataxia of gait
~Behavioral uniqueness, including frequent smiling or laughter, happy demeanor, often with hand flapping movements, short attentions span.

80% of kids have:

~Delayed or disproportionately slow growth of head circumference, ususally resulting is absolute or relative microcephaly by age 2.
~Seizures, usually starting before three years of age.

Fewer than 80% of kids have:

~Flat back of head (brachycephaly)
~Sucking and swallowing disorders, excessive chewing and mouthing behaviors.
~Feeding problems in infancy and early years
~Uplifted flexed arms during walking
~Extreme sensitivity to HEAT
~Sleep disturbances
~Attraction to/fascination with water.
~Sensory Issues
~Severe Constipation

So there you have the medical facts on the signs and symptoms of Angelman's Disorder. The chances of a child having AS is 1/15,000. And just to reiterate what I did say in a previous post, AS is a chromosome disorder. Specifically a mutation on the 15th chromosome.

So what does all this mean?

There is no cure. The only treatment is to treat symptoms or problems that are caused by AS. The good news about AS is that it is not a regressive disorder. Which means all skills that Josh gains, he won't lose. It just is so much harder for him to gain those skills. Speech is a big one with AS. Most kids are not verbal... at least fluently. I have found some research that says some kids have learned up to 60-80 words. But they will always have problems with verbal communication. They do understand most everything, but just can't communicate.

If you have any questions about AS, please feel free to ask away. I will do my best to answer them and if I can't, I have my sources to find the answers. I think I have accepted his diagnosis just fine...... it's just been nice to find a name to all the weird diagnosis' Josh has. He is such a sweet kid and I have said over and over... he is an angel. He deals with alot and he puts up with alot, and he is still just happy as can be. He is such a special and sweet boy.

Josh's Birthday, Catch-up Post

2010-06-10T20:37:00.003-06:00

Better late than never, huh?

We finished off Josh's birthday celebrations this past sunday. He got alot of fun toys at this birthday party and was in heaven...... once he opened them. He would rip some paper off a present and then walk away and we would spend 5 minutes trying to get him to come back and keep opening presents. He wasn't too excited over that part, but was happy to find toys (mainly cars) inside once he did open it up.

This is him blowing out three candles on his special dairy free/egg free cake recipe I found recently (and I am in love with!). He was such a big boy and really was able to blow them out again. I am so proud of him!

Now for our other big changes going on. We knew when we found out we were going to have another baby that we were going to have to move Josh out of the crib. I was originally going to wait until this fall to do it, but changed my mind. Josh usually takes a long time to adapt to change so I thought now would be better so we could use the summer to adjust before the big changes of preschool this fall begin. I was quite nervous about this whole idea but I knew we had to do it. I am not buying a second crib for this new baby. So I went last week and picked out some bedding that is perfect for Josh... Airplanes! He loved them. I also took down all the blue jean teddy bear stuff we had (that we originally decorated with) and I even got curtains that matched his bed set. I think it turned out cute and it was fun to get some new things for him.

This is just a close up of his bedding. Anyone that knows Josh knows how much he loves airplanes. So this bedding set was so perfect. I could not have asked for anything more appropriate for him.

Now for the changes in our room. Until we get our tax refund back in february of next year, we can't finish off bedrooms downstairs for Trevor and Jordan. So since our baby is due in december, he/she will be bunking with Scott and I until we can get everything done. So we moved the crib into our room.

Also after much thinking about it, I realized I had not one single place to put stuff for this baby when we start buying clothes and such. So I spent days on KSL.com looking for a deal on a dresser/changing table so I can have somewhere to change the baby and somewhere to at least put clothes. I found several I liked, but I was always too late. So I finally lucked out on tuesday and found this one for 85$. I was so excited. It is very solid and sturdy and has lot's of room.

I am excited to have this big change done and over with. And I am so happy that Josh has done excellent on the move to his big boy bed. We have him off night feedings now so things are working well in our favor. He loves his bed and I hope it continues to go well.

Now for other news...

The kids have been out of school for almost 2 weeks now. I am ready for them to go back. LOL!! Trevor is going through a med change right now and has not been the most pleasant to deal with. He has a follow up appt. next week with the psychologist and I am hoping we can do something different. The boys are a little bored now that they don't have school and I have been trying to do things to keep them busy. I have not felt the greatest the last couple weeks, so it's been hard to balance doing things but not over doing things.

I had another OB appt. Things are looking good, and we have a very wiggly child. I have to have lab work done each appointment now and will start the sugar testing soon. Yuck. My favorite part. I am hoping another few weeks and maybe I will get that 2nd trimester boost of energy. We'll see.

Other than that we are all doing good. The kids are still doing baseball and T-ball and will for another week and a half. It has been fun to see how well they are doing and enjoying it. Trevor I think has some of his dad's talent and really loves to play. I think he might just be our baseball player.

I will try to do much better at keeping this blog updated. I hope I can get into a good summer schedule and life will mellow out some. LOL... here's to hoping anyway!

The start of the birthday celebrations!

2010-05-30T18:53:00.004-06:00

I can't believe my little boy is turing 3 on tuesday!!!! We have kinda split up the celebrations a little and started it off tonight.

Josh's G-tube can pose some hard situations at times. I wanted to make a Josh-Friendly cake of some sort and let him go at it. I had to do this at our house since a bath would have to follow. And with a bath means new dressing change and everything. So tonight we had a small get together and Josh got to eat his cake. Enjoy the video's!

Also, just a side note. I have some news about Josh that I will be doing a seperate post on this coming week. Just so you know his genetic testing came back and he had been diagnosed with Angelman's Syndrome. It is a chromosome disorder. The 15th chromosome to be exact. I will do a post to let you know all the details. It was just nice to finally get the results back.

Thanks for watching our fun video's!

A Baby and Baseball

2010-05-26T21:39:00.003-06:00

When I found out I was pregnant I was worried about some regression in my house. THIS is not the child I had in mind though.

Scott took this picture a couple days ago of Jordan. Nice, huh?

And here is a clip from Trevor's baseball game tonight. He did awesome and got a hit and a run each time he went up to bat. Go Trevor!!!

MIA

2010-05-25T12:51:00.002-06:00

I think it is ok to say I have been very MIA lately. But.... I have lot's of reasons, does that count?

First of all... this month has been CRAZY!!!! Between the end of the school year, baseball/T-ball 5 nights a week, cub scouts, therapy and being pregnant... there is not enough time in the day.

So here is a summary of how everyone is doing.

Trevor is doing awesome with baseball! He loves it and really seems to have a knack for it. He is very glad to have school over with and I hope we have a good summer. He started some new meds two weeks ago, but so far I have not been impressed with what is going on. We have a follow up appointment with the psychologist in June.

Jordan is doing great too. He is so excited to be done with Kindergarten and get to move on to 1st grade. Both Trevor and Jordan are going to be attending a new charter school in Riverdale called Good Foundations Academy. I am excited to see what new opportunities will arise out of this. Jordan is also loving T-ball. His friend Roman is also on his team and he loves that. I just signed him up for AYSO soccer this fall/spring and he should also be on Roman's team. I think he is so cute about getting excited over the simple things. He is so fun.

Josh is doing very well right now. He has been healthy for the last 2 weeks and full of energy. I can tell he is doing so well health wise by his energy level. We have already started the weaning process of the night time feedings. So far so good. I have a good plan in place to re-introduce him to a balanced diet to see what we can do about weaning off his tube feedings by the time the baby comes. (I have high hopes). Josh's birthday is a week from today and he will turn 3. Can you believe it? He will graduate from Early Intervention on his birthday. I have been busy doing meetings for him to get preschool set up for fall. I can't believe it has already come to preschool time. He is getting so big!

The pregnancy is going as good as it can be. I have been pretty sick this time around and very tired still. I do think the thyroid meds have kicked in and helped me feel somewhat better. I just think how I am feeling now is just what is going to be the normal for me this pregnancy. I have been given all sorts of restrictions already and it's put a damper on my summer plans. No hiking, camping, ect. I also can't go to the zoo or anything like that. I will hit the time that my contractions started with Josh in July... so we are really hoping to avoid that. I have been very good this time about taking it easy and not over doing it. Of course Scott has been amazing at picking up the slack for me. I just hope it doesn't come to full bed rest again. We'll see.

So that is how I have been doing. I have been able to do the things I have to do to function, but things like my blog have taken a backseat lately. I hope to snap somewhat out of this soon. I have another OB appointment on June 3rd. I'll post more news when I know it. Thanks!!!

Mr. Tummy

2010-05-16T17:48:00.004-06:00

A few weeks ago Jordan came up with something called "Mr. Tummy". It was sooo funny the first time and continues to make Scott and I laugh every single time we see it. I don't know where this kid gets his imagination, but it's sure a wild one!

(Sorry it is sideways... this is the first time I have been able to get a video to work on my blog. Thanks Chan for the tips!)

Jordan's T-Ball Game

2010-05-13T20:44:00.003-06:00

Jordan has his first T-ball game tonight. It went very well and was quite entertaining. His team is the Orioles. He was so excited to play finally (since tuesdays game was cancelled) and had a blast.

Here is his first time at bat. He did awesome each time.

This is him being the catcher. His coach is going to move the kids around each innings to let them play all positions.

Go Jordan!!!

Sorry about the crappy pictures... I was shooting into the sun. This is him at the pitcher position.

And finally..... another picture of Josh. He was happier tonight, but for some reason I could not get a good picture. It was the sunlight I think. It makes me laugh that he wants his picture taken.

So far things are going great with the new sport/season. I will update periodically, but we have a ton of games. Enjoy.

Trevor's First Baseball Game

2010-05-12T21:42:00.002-06:00

Trevor had his first baseball game tonight. I am so proud of him! He did great and even got a hit. Since they have not had a team practice yet... I am so happy he did as well as he did. But then... he has to have some talent.... look at his dad!

He played three innings and seemed to really enjoy it. Here are some pictures. Enjoy.

He was the catcher one inning. He looked so cute all decked out in the uniform. Love it!

He also played 3rd base.

And here is Josh... who wanted a picture. He was not too happy about the game for some reason. He usually likes to watch the kids. I hope he is not coming down with something since he whined the whole day today. LOL!

Tomorrow is Jordan's first T-ball game. I will post pictures of that funny adventure tomorrow.

Mother's Day Miracle!!!

2010-05-09T11:57:00.003-06:00

We had a miracle here this morning. Trevor wore a dress shirt and tie!!!!

For years we have fought Trevor over church clothes. He hates them. So much so that he literally strips his clothes off as we walk in the door every week from church. He hates the feel of them and the textures. I never thought we would get him in a dress shirt and tie for a few years yet. But he got a couple CTR tie-tacs for his baptism and decided to give it a try. I am soooo proud of him and that he was willing to try something new. Go Trevor!!