Wednesday, May 30, 2012

Back to Braces

On Monday we started  a new therapy.  Mainly to work on the behavior and aggressive issues we face.  I liked her enough and hope that she will become a valuable part of Matt's team. During our meeting I realized Matt's gait was off.  It has been a few months since it has been off, but I could see he was having a hard time walking. I mentioned it to the PT yesterday and this morning we set up an early appt and went outside to run.  Matt gait was very messed up!  On the first lap he fell flat on his face.  During the 30 minute session Matt had to take many breaks and he fell 3 times and almost fell at least 2 more.

We tried to put on his SMOs, which I was never happy with the new design.  They didn't fit right and them on  messed up his gait even more.  I talked to the therapist and we both agreed it was time to get Matt a new pair.

The problem with SMO's, I am not a good mother of a SMO user, at first I was but over time we have come to realize SMOs only help in the moment.  For most people they are part of a healing process to retrain and gain strength, for Matt they fix his gait in that moment, and his gait fixes on his own during progressive periods with or with out the braces.  We defiantly don't want to advertise this though because custom SMOs are not cheap and   insurance won't want to pay for them for casual use.  During periods of regression they do help a lot.

This year seeing a physical regression starting and already being in an artic regression it leads me to wonder, did his first regression have a physical aspect we just missed?  Matt was 14 months old at the time, he had been walking for 4 months and he had never become a stable walker, people would stop and ask, "is he just learning to walk?" and I would say no he has been walking for months.  I remember sitting in the living room with the entire ECI team and they were astonished to keep seeing this cute little boy fall every few steps.  It was almost comical.  Looking back I really can't say if it got worst when he regressed, it felt so much like autism that it didn't seem like it could be something else, and autism doesn't have physical regression.
I guess this is another answer we will never know.

Sorry I have been so distant lately,  I am always reading blogs, I just haven't been commenting as much, for some reason this period of regression has really gotten to me and I am just bummed.  I am hoping to snap out of it soon.  The end of June is a very busy month for us, lots of specialist including the one in Austin and even Matt's SSI hearing.

Matt's fist pair of SMOs, I liked them a lot, they had a high back and they went past the toes for more support. 

Matt's second pair of SMOs, not sure what happened they orthotist wasn't sure, but thought they would still work just fine.  They don't have a high back and don't go past this toes.

I have already set up an appt for Monday after noon to go in to get fitted for new SMOs.  I am really hoping they have dinosaur transfer paper, I don't remember seeing it in the past but he wasn't  interested in dinosaurs.

Tuesday, May 29, 2012


I find a comfort in Matt sleeping in our bed. I wish I didn't. I also find it painful. I usually get a very small portion of the bed, where I am half hanging off because my husband has taken more than his half of the bed and Matt has taken more than half of my side. Yet still there is a comfort being over to reach over and touch my son, there is a comfort knowing that how ever unlikely it is, that no one can go into his room in the middle of the night and take him. There is a comfort that anytime I want to reach over to make sure he is breathing (which is often) he is in an arms reach. I do hope this is a habit that will be broken, before there was a few nights a week Matt would make it the entire night in his bed now I don't remember the last time he made it through the night.
We are hoping to go to Disney this year, I made my decision, we are going with the cheapest hotel because their assessable rooms have one king and one double.

Saturday, May 12, 2012

I Miss My Mom...

This isn't something I talk about much, but this year more than ever I miss my mom.

- She would have loved Matthew.  She would have been in love with him just like I am and would have thought he hung the moon and stars.

-I would love to hear her voice, I would love to talk to her about everything going on with Matthew.  I would love to hear her opinion and would hope I wouldn't be frustrated by her "God has a purpose for everything."   Not that I don't believe it, but when you  are fearing for your child's life it is the last thing you want to hear.

-I would love to know if she really had MS.  I really believe that whatever she has is connected to Matthew.  A few of the things we have tested for have so many of the same symptoms.  If I knew if she had something else it could really help us out with Matthew.

-I spend way too much time thinking what if....
-what if I had felt different about feeding tubes back then and she had one.  She never wanted that, but my view on feeding tubes are so different now.  It could have been life changing.
-I had been older and done more research, gotten her in clinical trials, been more of an advocate.  (Not that 10 years ago I even knew what that meant)
-what if she had, had a person to be an advocate, what if she had been an advocate, I would never not fight for my son - why did no one fight for her.  Why was it okay to leave things in God's hands?  Not that God is not worthy, and he gave her the strength to be an amazing person through everything, but he can't fight battles with doctors and insurance companies.

I miss my mom so much lately it hurts.. I would love to cuddle up next to her and talk, cry, have her hold me.  I don't have that from any one.  My husband really isn't good at it and I don't let many people into my life that way.

I regret my mom's last mother day I didn't spend it with her.  I was so lost in my grief of losing my babies I went and visited her earlier in the week but told her I couldn't see her on Mother's Day.

I just really wish she was here.

Thursday, May 10, 2012

Some Changes

First.. The newest member of our family.

After much thought we found  a new home our dog Izzy.  I felt so bad.  I thought I had waited for the perfect time to get a dog.  Then three days later we started testing Matt for life shortening illnesses.  I went into a major depression and Izzy was put on the back burner and not put back to the front.  Also when I was little my mom ran over our cat with her wheelchair when she was having a flair up, they took the cat to the vet but there was nothing they could do.  It was devastating.  Izzy was a small dog and if Matt is ever confined to a wheelchair full time I hated the idea this could ever happen to him.  Matt loved the dog so we go T-Rex the guinea pig to help him.

Matt's behavior has been challenging to say the least.  His meds stopped working or something.  He has become very aggressive again.  Our developmental  pedi is working on fitting us into her schedule.  I hope something helps.

Wednesday, May 2, 2012

The Good, The Bad, The Ugly...

The Good...
This morning I woke up very thankful that my son doesn't have autism or ADHD-ODD (both are previous diagnosis).  I spend a lot of time thinking it would be nice if those were the issue because we would have a diagnosis, there is so much support out there, and so many answers.  Also, with both of those I wouldn't have to worry if there will be a future for my son.
The Bad...
I haven't wanted to post this yet, I am not sure why, but Matt has started regressing.  This weekend was very difficult.  Matt became very difficult to understand and it led to much frustration for all of us. By Monday he had adjusted.  Matt just decided he doesn't really need to use words is choosing non verbal  ways of communicating.  Like pointing and grunting or asking me to look.
This had led to much frustration for me,  last year and this year during the good artic times I always think if he regresses again it is going to be so hard for him.  Now I see he adjust so fast if I wasn't looking I wouldn't notice.   Which makes it so hard for me.  I want him to want to talk.  This might be wrong but I want him to be frustrated he lost this skill and I want him to want to work at getting it back.
The Ugly....
My biggest fear so far is as I have mentioned before this is the first year regression has started and he is not any farther than he was a year ago.  This kills me.  When looking at regressive disorders Matt has always been so unique that he can regress, gain back the skills lost, and pass them.  I don't know where this year leave us and it scares me.  Last year his regression was so bad... I am not ready for that again. It has only been 5-6 months since he started making progress.  I wish I had more of a break.

Tuesday, May 1, 2012

Matt LOVES...



There isn't much that makes him as excited as bowling.  We don't go often but when we do he is so happy.  He has been asking everyday for a few weeks so tonight we finally took him.  I am so glad we did.  He had such a blast.  I am sure some of the people around us were annoyed by the very loud excited kid having a wonderful time, but we also had some sweet people who thought he was cute and loved watching him.

In the beginning before he started getting really tired he even understood angles, he would move the bowling ramp around to make sure it would hit the pins.  It was really a blast to watch him.

Love this smile!  I can never get a good picture of it, I left he area for a while and asked Kevin to get a good picture of him smiling and this is what I got!!! YEA!!!!