Wednesday, February 29, 2012

Wow, an Update!

Using lefty to hold his AFO.

Sitting up in a squash.

Car from Aunt Heather and Uncle John.

EdVenture Children's Museum field trip.

I have a love/hate relationship with this blog. I love it because it is a record of Nick's life but I hate it because it never works right. I can either write and not post pictures or post pictures but not load what I wrote. Anyway, I feel like we have been busy, busy, busy. Nick is enjoying school and his teacher and therapists have all seen improvement in him physically and mentally. He is paying attention for longer periods of time and seems to really enjoy his time at school. He is also a little stud and likes to hold hands with the girls in class. Unfortunately he has been sick once a month since he started. When he is sick I usually get sick too. We have both had fevers and I can't even remember the last time I was sick with a fever. He currently has an ear infection and a sinus infection. He has been out of school all week but is on the mend.

He has had his normal check ups with his specialists. GI and surgery are still watching the cyst that was found during his gallbladder removal. He was actually supposed to have an MRCP which is an MRI of the pancreas but we had to cancel it because of his cochlear implant. They didn't' have that in his records so I called after I looked up what an MRCP is and we found out he can't have an MRI. They could do it if they turn the magnet way down in the MRI machine and wrap his head in padding but it could still cause burns where his implant is. We aren't going to do that so plan B is to do and ERCP which is an upper GI with x-rays. His GI doctor is on vacation so when he is back the two doctors will discuss if this test will give the results they need to see the cyst and form a plan of action with it.

He had appointments with his neurosurgeon and eye doctor. Both of those appointments were fine. His last head CT looked good and his eyes have not changed. He still won't keep his glasses on but his eyes aren't really bad so we aren't forcing them on him. He is still going to the dentist once a month. He has a wonderful dentist who is doing his cleanings pro bono since insurance will only pay every six months. His teeth look so much better than when we started going to the dentist and they were almost black from medications. We also went to a new doctor who is a developmental pediatrician and specializes in CP. It wasn't anything special but it's good to be a patient there since he is so hard to get an appointment with. Nick goes back in six months. He still receives PT and speech outside of school. He has been really bad with his cochlear implant but has been better the past month or so. He definitely isn't at the 1.5 year post implantation stage like he should be. He is more like a 6-8 month old with communication. He has learned that he is supposed to wear it and will keep it on if someone is standing right next to him. As soon as we turn away he takes it off though.

1 comment:

  1. Hi~
    I came across a post you had written when Nick was still a teeny little thing... it led me to scroll through the journey you have been on. Our second preemie had some of the same challenges, and we prepared ourselves for a life dealing with the effects of her CP and other complications. Unfortunately, she did not survive an infection in her VP shunt. I find myself conflicted, because at times I'm even jealous of the struggles...anything just to have her back. I know it's not an easy road for you though, and it must be exhausting and overwhelming some times. I hope you are blessed with the strength to keep pouring your life into sweet little Nick, and that he will always be your shining beacon of hope after all you have been through and continue to face.