Monday, October 31, 2011

Happy Halloween!

Matt wants to try trick-or-treating tonight! So far it hasn't gone well, here is hoping tonight will be different!
I hope everyone has a great Halloween!

Saturday, October 29, 2011

Fall Time Fun

A few fall time photos.
The weather is finally cool enough to head to the park.
Matt's sleep study.
Pumpkin Carving this morning.
Fall festival at cousins church.
Tomorrow is the Morgan's Wonderland accessibility festival after church.
Sunday Halloween where we will be heading to our church Fall Festival that I love!





Friday, October 28, 2011

Sleep Study Tonight

Tonight is Matt's sleep study. It is tough to prepare for a sleep study, it is tough to prepare for any event where a special needs three year old will have to sleep somewhere else. Matt has so many comfort items and things that he "needs" and he is so obsessive is I miss something he will complain all night no matter how small it is.
We also got the approval for his special needs stroller. We got the approval last week but I just found out the other day. I never got a letter in the mail but I spoke to the person in charge of Matt's case and she told me it was approved. The stroller has been ordered and we will have it in 2-3 weeks. It will be nice to have it for all the holiday shopping coming up and all of the things that we want to do through the holidays. I borrowed a stroller from my friend that fits a little bit older kids this month for things we want to do, but it is really too small and very uncomfortable for him.
Well - wish me luck tonight!

Friday, October 21, 2011

A week of updates

I don't know if I have really updated yet, but I wanted to document the latest updates.

On Tuesday we saw one of Matt's neurologist Dr T (the one I don't like)
I told him what was going on and after some blood work he is taking Matt off of his seizure medicine to see what happens. From what I can gather from his un-informed (about this) receptionist I am supposed to call back in two weeks to give an update. Still waiting this doctors input but I am not hopeful. He didn't want to do another MRI because his last MRI was normal. UGH!

Today we went and saw Matt's sleep doctor, I like this guy. He is really nice and always really caring. When we started seeing him Matt slept less than 4 hours a night and those hours were interrupted. Now after surgery for his adenoids and other medicines Matt is in his bed for 10-12 hours a night. He has been sleeping really restlessly lately. He is still waking up a lot, and in the morning he still seems really tired. He decided to do another sleep study just to see if there is anything we can do. He is pretty sure whatever sleep issues are left are from what ever neurological problem that is gong on. Then he added right now we want to check under and rocks we can.

Something odd happened last night. I was getting Matt dressed to run to the store. I put both of his socks on, both of his shoes on, then I put both of my socks on and one of my shoes when all of the sudden Matt started saying that his foot hurt. I took Matt's shoe and sock off and there was a 1 inch plastic bracket in his sock. (This was the first shoe that I put on) What I find odd is how long it took him to notice the problem. If it was me I would have noticed right away as soon as I put the sock on, if somehow I had missed it the minute that shoe when on I would have noticed.
I know with MS the patients don't feel pain. I wonder if Matt is having that issue. He used to not feel pain when he got hurt everywhere but lately he has been a little more hypersensitive than hypo. Then last night at the store he started freaking out that his feet hurt, I took his shoes off and he wouldn't let me put them back on, but I am not sure if they were really hurting or he was trying to get attention. I hate not knowing these things.

Blogworld has had a slow week, I hope next week is a little busier. I miss reading new blog post. I hope everyone has a good weekend.

Tuesday, October 18, 2011

Pro Lo Quo 2go

We have been waiting for Matt go get his PECS book for a few weeks. There have been a few set backs, like me taking a while to get the pictures, Matt's ST losing her thumb drive, Matt's ST never making one like it before, and not being sure what book to put it in. Last week she told me that she should have it for him on Monday, I was really looking forward to it. When she got to my house she told me she had good news. She was talking to her co-workers and they asked her why we are not just applying to get a iPad and Pro Lo Quo 2go. She didn't know before that there is a way to get one as a communication device. So we filled out the paperwork and in hopefully 8 weeks Matt will have his very own iPad with Pro Lo Quo 2go. There is only one license but I will also be able to use it on my iPhone for when we don't want to take his iPad places.
I am so excited! I can't imagine Matt being able to talk and everyone being able to understand him. I can't imagine him being able to talk to my aunt and my grandma on the phone, or be able to talk to strangers and be understood.. just being able to talk to anyone!!!!! I am so excited! I really hope it all works out.
If you are unfamiliar with Pro Lo Quo there are some great videos on you tube and the website.

Saturday, October 15, 2011

Wednesday, October 12, 2011

Another Day

On Saturday Matt had a really hard time walking. It seemed like every 5 seconds he was falling. At one point he would stand up take 2 steps and then fall again. - That has passed and now he is back to his normal walk. It is weird to me that these things just come and go. Like last Sunday Matt's gait was very messed up, I tried to get it on video but every time I let go of him he ran so I couldn't get it. It cleared up the next day. - I hate that he is so inconstant. I am incredibly glad that he doesn't just get progressively worse, but at the same time it is frustrating to see him struggle with things and then when I try to mention it to a doctor they will say well I don't see it now. I haven't been told that in a while but in the beginning it felt like that a lot.
As Matt has been regressing, a lot more of it is being documented because we have great therapist that see him a few times a week that see that something isn't right. I also have good doctors who seem to listen and really care.
Another mixed blessing is upon meeting Matt he seems so healthy it is hard to believe that anything could be wrong with him. If he was more severe I know the doctors would be working harder and I would be getting faster appointments to see them and get results sooner. Since he seems so healthy they take the position "lets wait it out", "he's a work in progress", "this could just be a phase" No one has answers and it is so frustrating. Since he keep regressing I have so many fears, I dont' know what the future holds and neurological damage can't be fixed once it happens. If he does get to a point where he gets so much worse the damage might not be fixable. The same doctors that tell me "lets wait it out" also make sure i know if he starts to have any lung or breathing problems go straight to the ER, because in the back of their minds they all know the possibilities of the signs he is having can be very severe and can be deadly if the deterioration goes to the most vital systems of his body.
Matt's language has also been a little better the last two days. You still can not understand 80% of what he says, but there is more understanding than there was last week.
I do hope and pray beyond anything that Matt doesn't have a terminal illness at the same time I really want answers, I want to know what is going on. I want to have a clue what the future holds.

Wednesday, October 5, 2011

Surreal

Today I had a meeting with a medical supply company and my son's PT supervisor. We are looking into getting Matt a special needs stroller or wheel chair. It is a very surreal experience picking out medical equipment for your child. I am very happy that we are working on getting it because Matt has out grown his strollers and other seating for toddler/babies. This alone has really limited what we can do as a family. At the same time it is very sad that this is needed.

We picked out the convaid ez rider in teal with planar seating. The medical supply guy said that insurances deny strollers a lot of the time because they are looked upon as cheap things that will break soon, even though they have made a lot of advancements.

Our back up is the Sunrise Medical Quickie 2 in green. He mentioned that the is a standard stroller, but the wheelchair we can adjust with Matt depending on his progressions or regressions. I know the stroller will be nice for transporting, it is much smaller and has a 5-point harness but the wheelchair would be nice that he could have more independence.

It will take us 2-3 weeks to get an approval, and then I guess another 2 weeks to get the chair. That seems to be about standard wait time for medical equipment.