Liam had his first spina bifida clinic today and it was a doozy. We met with doctors for 6 hours! We are all tired to say the least. Liam did amazingly. He was very cooperative all day with people messing with him. Liam didn't cry at all until we were leaving and that was 6 hours in. All the doctors said we are very lucky to have such a calm baby. We already knew that!
Right now we still don't have any more answers than we did before. We met with urology, neurology, orthopedics, and a special neurodevelopment pediatrician. They were all impressed with Liam so much. They do think that he will WALK one day which is an amazing blessing. They are still uncertain about his bladder/bowel control and how that will change as he gets older. However, they do believe that with a management plan in place he will live a very normal and fulfilling life. There is still a 50/50 chance that he'll need a brain shunt. His ventricles are enlarged and have increased slightly over time, but the neurologist said it is nothing major right now. She'll continue to monitor it through regular ultrasounds but right now she was very pleased with how things looked. The fluid on his brain hasn't increased and his head circumference is appropriate for his age.
Liam got another pair of AFOs to wear since his ones made at CHOP are too small now. They are lighter and clear (lime green wasn't an option) so they won't stand out as much. He has to wear the left brace more often than what he was before, including at night, but we can cut back on the right brace usage. We will have to come back and get another pair made in about 6 weeks since he will more than likely out grow this pair by then.
Speaking of growing, Liam is 6 lbs 14 oz. That means he grew 11 oz in one week and has officially doubled his birth weight. We visit his regular pediatrician on Monday and we are guessing he will be 7lbs! Our peanut is growing.
We will travel back to Duke in about a month to have some urology tests completed as well as some neurological ultrasounds. We will then come back in 3 months and meet with everyone again.
He is starting physical therapy soon. We are in the process of setting it up. We are enjoying being at home with our little man. Ian goes back to work in three weeks and Allison starts back the beginning of December. We are still trying to find someone to watch him when we go back to work. Hopefully we'll find someone in the next few weeks.
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