January 15, 2010

Clinic Appointment

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!


Anonymous said...

Wow, lots of visits recently! I will keep praying especially for the hip growth. I can only imagine the loving time and effort you have put into nursing it just right. Praying it will continue to grow and strengthen! Hugs!

Andy Tanis said...


I personally have never met you, but I believe we share something in common. My wife and I got married in April 2009. My wife is the only one in her family with spina bifida. Her case, however, is mild.

We are expecting our first child (a girl :) ) in March. At the 20 wk ultrasound, the doctors found that our daughter has a mild case of spina bifida. We have decided to name our daughter Faith Lynn, because faith is what we are praying for in rich measure.

I am encouraged by your faith and talk of the ways in which God has blessed your family, and I want to assure you that Whitney will be in our prayers. My friend, Laura Wiese directed me to your website.

The latest new on the pregnancy is that my wife is starting to have contractions, and we are getting anxious that the baby wants to come early. (Monday will be at 31 weeks).

God bless you and your family! May you feel His presence as you and your family grow in His love.

Andy Tanis

Mary said...

Thank you again for keeping us updated on Whitney. What a darling girl! I love love hearing how God is working in all your lives and I pray God's blessings for you all : )

Mary Cook

AMIT said...

Hope that everything is fine now.

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