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Make Sure Madigan Is Not Alone This Holiday Season

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Madigan’s Story

Welcome to Madigans Site. It has been created to keep friends and family updated about our little one.

My Story is the introduction to our CaringBridge site.
First Liberty Bank and Trust
Madigan Gow fund
1033 Maple Street suite #1
PO BOX 413
Little Meadows PA 18830

 



Madigan Claire was diagnosed with progressive congenital scoliosis on December 22, 2006. Just a few days before Christmas and her first birthday. In the simplest terms, Madigan's spine is collapsing. She has hemivertebrae that are interfering with the way her spine is growing. Hemivertebrae are vertebrae that are shaped as triangles instead of squares. She has hemivertebrae at C7 on the right, T5 on the right, T9 on the left and we don't have a CT scan to really assess the rest if there are some others hidden in there. In addition, she has a bar that is at least from T2 to T5 and maybe goes from T2 down to T8. Again, the CT scan will tell us more. She also has fused ribs at T2-T3 and T4-T5. Oh opps she has Syrinx. It is a bulge in the spinal cord that could swell and not allow fluid to pass through. This could cause brain damage. But Madigan's is unusually long so the 3, yes 3, neurosurgeons she has seen do not feel it is a problem at this time. It will be closely watched.

Update: She had spinal cord surgery 2/11/09 to shunt her thoracic syrinx. It left her with an incision from the nape of her neck to her lower thoracic area. It was her first surgery ever and very difficult on her but she was tough and showed us all she can do this.

I am proud to say that the Doctors that we have meet have praised us for the great job with due diligence searching around for all of Madigans options. We, my husband and I, have agreed that the VEPTR ( VEPTR.com ) procedure is what's best for our baby at this time. The proposed procedure would be an expansion thoracoplasty on the left with a hybrid device from T2-T3 down to T12 or L1 and a lateral device from approximately T2-T3 down to T8-T9. Depending on how that looks, then Dr. Betz and his team would propose approximately three months later, if needed,, to do a titanium rib on the opposite side from approximately T6-T7 down to L3. That will be decided at a later time.

Update: Dr Amer Samdani is now Madigan's primary surgeon and he has opted to do a bilateral (both sides)VEPTR from just below her shoulders to the crest of her hips. It will rest on her iliac crest and not be fasten to anything. I do believe this is a new procedure and only used in severe cases. If I am wrong please leave me a message.

Possibly, no definately most important, we want to acknowledge the Lord, our families and friends and the prayer chains that extend literally from coast to coast and the support Madigan has already received during this difficult, confusing time the show of support has been almost as overwhelming as the Scoliosis itself.There is no way any of us can ever thank all of you enough.

Update: madigan had spinal cord surgery @ St Christophers children's hospital 2/09
            She also underwent her Bilateral VEPTR surgery @  Shriner's on 4/24/2009 She is an amazing child and we are very proud of her and her siblings for being so strong!

update 4/11/11 Madigan had her 7th spinal surgery

Latest Journal Update

Home sweet home

We arrived home last night, all glad to be here. Madigan's dog, Lola went crazy when she saw her girl. It's good they love each other.


Madigan rode home like a champ but by bed time her right hip pain had started to rear its ugly head, an ice pack and pain meds did the trick.

Today has been a lazy day. She has been on the couch with Lola and Holly, her grandparents pup.


She has received very nice cards and gifts, thank you all for caring about her.

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Comments

1 Comment

Lori Carter
By Lori Travis Carter
Now she can rest up and heal. Not to mention, her Mom and Dad, need rest too. Love to you all!
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