I'm not sure where to start, so I am going to listen to the advice my husband gave me and start with now. As I have time I will look back. If you are reading this blog for the first time and don't know our story you can check out the links to my husband's blog under "The Road Here" or you can just go straight to the Dandy-Walker/Hydrocephalus link on his blog. He blogged a lot during our pregnancy and during T's first months. I'm glad he did because I was too overwhelmed to do it and I don't remember a lot of the details. I hope to record my thoughts and feelings about this time eventually. Although it was a very difficult time we had a lot of wonderful experiences of learning and growth that I don't want to forget.
Right now T is 11 months old. He is doing very well. He is such a happy baby and is an absolute joy. I often tell people that besides the four brain surgeries and two shunts he has been my easiest baby! Personality-wise he is so happy, and for being such a small baby, he has been very healthy.
In the last couple of weeks he has had two check-ups. He went in for a 9 month check up at the pediatrician's office (we were a little behind because of the busy summer). The doctor said he looked good. T weighs 16.6lbs (.54%), he is 28.5in (27.98%) and his head was 17.75in. (24.8%) The doctor said that although he is small he is progressing up the curve just like he should. He did give me a referral for additional therapy (besides the Early Intervention therapy he has been receiving). We haven't taken him in to be evaluated yet but will be doing that soon.
T also had a check-up with his neurosurgeon earlier this week. Every time we drive up to the hospital I feel anxious. This week was no exception. This was a scheduled check up and there was really no reason to be nervous, but I was. I tried to mentally prepare just in case they wanted to keep him there. Our appt was at 9:30am and I even had baby sitting arranged for my girls when they got out of school (2:30) just in case. Crazy? Maybe. But, I guess we have made enough trips up there thinking everything is OK, when it wasn't, that I don't want to be surprised.
Well, everything was OK. Of course. The doctor was very happy with the progress that T is making. He asked about milestones-Is he sitting up? No. Is he manipulating toys? Yes. Is he pulling himself up to things? No. I hate these questions. It reminds me that he is different. He isn't doing the things that an "average" 11 month old is doing. I don't remember this as much when we are home. These questions are a reminder.
We also talked about his feet. I am a little worried about them. He can't point his toes. It looks like the tendon in them is short or something. But, the doctors (I also mentioned this to his pediatrition last week) seem to think that physical therapy will help that. Dr. R (the neurosurgeon) said that if it doesn't improve they can make referrals to other doctors.
All in all, T is doing great. Dr. R hardly spent any time looking at him. Which is a good sign I guess! I still left the office crying. We realized that it was about a year ago when we first met with Dr. R. Then we were terrified. We were talking about all of the different possibilities in the future. Trying to make plans for T's birth. Would T go full term? Would we have a c-section? What would happen after T's birth? When would the shunt be placed?It was then that my hopes of having a "normal" delivery were dashed. We would deliver at the U of U so we would be close to Primary Children's Hospital, just in case. What a scary time. A lot of questions without answers. A year later it seems that I am a little more comfortable with unknowns. I still don't know what T's future holds, but I am a little more comfortable just sitting back and enjoying the ride!
