Tuesday, August 30, 2011

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. :-)

Wednesday, August 17, 2011

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!