Claire’s Story

During my pregnancy with Claire, I was told she had meningocele and the doctors told me, “just be glad she doesn’t have myleomeningocele!” So, my pregnancy passed easily and ironically, I was mostly just thankful that she didn’t have myleo. Of course, she did have myleo and so her birth felt like it came with a completely different diagnosis.  It took me several months to “catch up” so to speak. She did have a shunt placed but has not had any revisions. She was a very docile baby. I tell her that I don’t know what happened but at 1 yr she had a complete personality change.  She is high energy, opinionated, and talks incessantly. Now at almost four, she is incredibly witty and her language is far beyond her peers. At our appointments, she approaches the front desk by herself, tells them her name, and will chat on and on about where we have been that day, etc. Someone told me the other day, “its like talking to a little adult!” She is also incredibly imaginative. Recently, she has renamed herself, Rosa Rainbow Sherbert and prefers to be called by her full name.

Ours greatest struggle have been her clubbed feet. Her feet were graded an 18 out of 20 for severity and they remain stubborn. She has recently had a surgery to correct them and will most likely have one more surgery in a couple years when her bones are more mature.
She is L3 and we have received every prognosis under the sun–walking without braces, full time wheelchair, HKAOS and a walker, walking with AFOs, etc. Its been hard for me to be in the middle, because, at nearly four I still don’t know exactly what her mobility with be. Currently, she crawls and cruises around furniture. She has a wheelchair for long distances, but most the time says, “I’d like to walk, you may just have to help me a little.”  We anticipate her being a very late independent walker but if it becomes apparent that its not happening then we will introduce arm crutches.
She is very happy….dying to start kindergarten and when she grows up she wants to be a “ballerina nurse”.

5 comments

  • What a great story! Claire, err Rosa Rainbow Sherbert, sounds just amazing. What a perfect personality – I bet she can light up a room! Thanks for sharing.

  • Oh gosh! I have tried several times to read this and kept getting interrupted. I’m so glad I finished. Please tell miss Rosa that I hope she does grow up to be a ballerina nurse. How fantastic!! About the time she would be successful with that I’ll probably be old enough to be in a crazy old lady home. If I am I want her to come visit me!

  • Awww……Rosa Rainbow Sherbert sounds like an amazing character. We need more people like her on this earth. Club feet are difficult. I am so thankful for our orthopedic surgeon, I truly believe he is the reason Lauren walks today. Mira has one foot that was SO bad (pretty much upside down), and she will never walk for a number of reasons, but thanks again to our surgeon, we can at least get shoes on her. I feel your pain! It can be a long process!

    • I should probably clarify that I have 2 daughters with SB, otherwise the above doesn’t make make sense and could be confusing. Lauren is 11 and is our biological daughter who received world-class care from birth at top hospitals in the nation. Mira, we adopted from Ukraine where she received little to no care for almost 3 years. That first 3 years is important!

      • Yes, if Claire didn’t have surgery and braces, she would essentially walk on the tops of her feet–which makes it so heart breaking to think of kids in other countries who don’t have access to those interventions. I think its awesome that your family decided to adopt Mira. My husband and I have talked in depth about adoption in the future but feel we need to get past these next couple yrs with Claire first.

< Return to Community Forum

Leave a Reply