Update on the iPad

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!!!

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

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

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!!!!

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.....

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....

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

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....

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

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

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........

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

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?

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

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.