This morning we had our spina bifida clinic 6 month appointment. This consists of seeing many doctors back to back, in theory, throughout the morning and sometimes into the afternoon. Thankfully for Whitney and I it was only the morning. At two years old Whitney weighed in at 26.5 lbs and 34 inches long. I will highlight the main points for you.
Speaking of height. He mentioned Whitney may be at a disadvantage in the height department. Each child with spina bifida has a tethered spinal cord. This means the spinal cord becomes caught, or tied down during bone growth by scar tissue and needs to be surgically released. Since we are a tall Dutch family she is genetically disposed to being taller and may have more issues in this area. We can only hope she received the long leg gene and not the long torso one. He has no concerns with her and said we can see him in 1 year!
Physiatrist (rehabilitation physician):
Thought she looked great. He encouraged us to do some spatial and language testing when she is 4 1/2. (You may need to remind me that I need to make that appointment, since it is only 2 1/2 years away.) Many children with spina bifida struggle in these areas to varying degrees. This is one of the many ways that spina bifida is hard to treat because there is such a wide spectrum.
She thought her spine, feet, knees, and hips looked great. She also told me not to be emotionally attached to her hip growth and I quickly admitted that I was. She warned/prepared me that although her left hip is growing great right now, it is still weak and may very well come out of socket... I am so invested in this hip as we have spent many months 'nursing' it. I guess it is a great reminder not to discontinue praying for it, as God is ultimately in control. She also said that she is not seeing very much quad strength and that without quad strength it makes walking very difficult. She is not saying so now but alluded to having higher braces than just her AFO's for walking. She also wants us to start the search again for a standing frame. So, if you know of any we are in the market again!
I also wanted to mention to you that I have been blessed with getting together once a month with other spina bifida moms in the area. We just had out coffee night this week and it is so encouraging to chat with others who are in similar circumstances and who understand. Thanks ladies!