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.

Our Basement is finally done!!!!!

 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!!

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

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!!!