I know that this post is long overdue. I have been putting it off because Matt broke the power cord to our laptop and I haven't wanted to post from my phone. Luckily, I found a computer to use which will make this update take a lot less time.
Since the last time I posted, Grant was baptized. It was a very stressful day, and I am glad that it is over. I didn't plan it very well and his baptism was schedule right in the middle of his usual nap time. He was a fussy mess. Thankfully we made it through it!
We still have to wait until the end of August to get the results of our genetic testing back. We still don't have a diagnosis yet. His progress is slow, but at least he isn't moving backwards anymore.
Grant has come a long way with his progress with his hands and arms. Not only is he reaching for things, he is allowing his hands to be manipulated. He is so much more accepting of someone moving his arms and hands it really blows my mind. He used to start to crying hysterically whenever someone would touch his hands. Now there are times that I sit on the couch and just hold his hand. It is absolutely amazing.
Unfortunately, there haven't been too many other changes. He is still extremely limited on what he can do physically. His therapists think that his muscles and joints all work and he is capable of walking, but it will just be on his own time. I have been looking into getting him private therapy because I would like a second opinion if we need any special equipment like a stander, braces, or a gait trainer. Like everything I try to do for Grant it takes a lot of time and paperwork. I am trying to get everything in order, but it is difficult when people will not return my phone calls.
I am also still in the process of getting Children's with Special Health Care Insurance for Grant. I'm hoping that this insurance will pay for Grants CoQ10 that is currently not covered by his other insurances. Right now we are giving him CoQ10 that is over the counter and not as good of a formula as they would like him to be on. We just can't afford what they want him to be on because it is $200/mo.
Grant started a new program called Early Headstart through CANI. They come out each week for 90 minutes. There are different things that we work on and it is more of a hands on program then the other therapies he receives.
I am currently trying to get Grant on a blended diet. Instead of the formula he gets through the tube, I would use a special blender to blend real food thin enough to put through the tube. The blenders are expensive even with a medical discount. They are about $300 (including tax) for a reconditioned one. I really would like to get him on the blended diet because right now his stools are completely liquid and that just doesn't seem right. I need to make an appointment with the G.I. doctor because of that and because his g-tube site has some overgrowth of tissue that needs to be "burned off" with sliver nitrate sticks and I don't think I can do it myself. I'm hoping that the real food will be better for him and help him hit new milestones.
It is hard having a special needs child. I don't think everyone understands. People tell me not to dwell on it or not to label Grant as "delayed". But it is hard when you have to feed your child through a tube 3 times a day. Every commerical of a baby or anytime I see a child out, I am reminded that Grant is different. He can't walk. He can't talk. He can't even feed himself. I am constantly reminded of it. I am jealous of people with normally developing children. I know that things could be worse, but I just wish our life didn't consist of doctors appointments, therapies, and tube feedings. I wish things could be easier.
