Changes

Last week, I had to suck up my mommy hurt and finally apply for a disabled parking permit for him. Matt's neurologist is very accommodating and during our appointment last week were he diagnosed our little man with Cerebral Palsy, I asked for a script to get him into the wheelchair seating clinic and they filled out the required forms for the permit as well. It is well known in my family that I have been very hesitant and vocal  about not applying for disabled parking for Matt. I had my reasons, one being that I felt like I would be abusing the privilege of having disabled parking and taking a spot away from someone who really needed it. And when he was still small, it was true that he didn't need it. It was also one of the few ways I was able to deny Matt's developmental and physical delays. Now that he is older and so much harder to get in and out of the car and into wherever we're going, I've had put whatever I am feeling aside and do what needs to be done for him.

 Earlier this week we took Matt to get fitted for a wheelchair. It has been very hard for me to accept that we have gotten to the point that he needs a chair, that yet another one of my plans and dreams for him was changing. Facts are facts: he rolls over, but will not tolerate being on his stomach long enough to push up on hands and knees, he isn't crawling, and sadly, my baby is getting too heavy to carry around for long periods of time.  I still have hope that someday Matt will be able to stand independently and even walk. He has already made progress in the standing department, surprising his two therapists and I by popping up off a bench he was sitting on during a Occupational/Speech co-treat session. I had to look at the benefits for him, that it would give him more independence and maybe get him a little more interested in the world around him rather than having someone hold him all the time.

The day of the clinic, Dad had to take over kiddo duty because I was stuck in bed with a virus. I definitely was not fit for public consumption. I felt so guilty because I wanted to be there for Matt,  but his rehab center is full of kids that are medically fragile so I wouldn't want to expose them to what I had going on. From what Dad told me, it was a pretty simple process, a wheelchair fitting team comprised of an Occupational Therapist, a Physical Therapist and a rep from the wheelchair measured Matt and then had him sit in a few different models to see what would work best for him and what features they would add. The only requests we had when it came to the chair was that it recline so that we could lay him back when he got tired because he has limited head and trunk control. We will get his new wheels in September. I can't wait to see how he reacts to his new view on the world :)

Information Overload

Today was a big day for us. We saw our neurologist today because the kiddo had an abnormal 24 EEG last week and they wanted to discuss medication options with us. When we met with the doctors we learned that he is now has what is being called Mixed Seizures, meaning that he is having two different kinds of seizures. We knew about the Absence seizures because we have seen him have them. The second kind I had never heard of before. It's called Salaam seizure/spasm, and it looks like he sharply jerks his head down to his chest when he is having one.The doctor compared them to infantile spasms, but not as severe. After they told us what it was, he had two episodes we noticed today. They gave us two treatment options, one to give him an experimental drug that can cause blindness (he already has Cortical Visual Impairment) or giving him a different drug (don't know which yet) and starting him on a ketogenic diet. We decided to go with option # 2 for now and see how he does. He depends so much on his peripheral vision because of the Cortical Visual Impairment and the idea that he may lose it because of an experimental medication is unthinkable to us.


While we were there I brought up with his neurologist that his pediatrician mentioned the possibility that Matt might have Cerebral Palsy at our last well child check. With all his health issues, we have never been given a formal diagnosis that might explain everything that he has going on--seizures, microcephaly, genetic abnormalities on chromosomes 3 and 5, developmental delay, hypotonia, CVI and bilateral hearing loss. From everything I have read about CP, it sounded like some of Matt's issues could be classified as Cerebral Palsy. His neurologist agreed with me and added the formal diagnosis to Matt's medical records. As weird as it may sound, hearing the diagnosis was a relief to me. For the past two years, we have seen numerous specialists and therapists and it felt like all they did was heap all those other diagnoses on my little man without actually giving a name to all that he was experiencing. The CP diagnosis changes nothing about Matt. He is who he is and and his health issues do not define him.

So much information to process today, but I'm feeling confident that we made the right decisions at this time.