Monday, May 7, 2012

Jonah :: Child with Spina Bifida

We found out or son Jonah would have Spina Bifida on our very first ultrasound at 19 weeks. A month later we went to the specialist and got some great news...the lesion was low (L5/S1)! Our doctor said "If you have to have Spina Bifida this is the one you want." All our appointments from there just got better and better! On July 5th 2011 Jonah came into the world via C-section weighing 7lbs 2oz and 22in. long! When he was born we found out he was soo tightly squeezed in the womb that his legs were up in his face. With a little physical therapy his legs went back to normal in less than two months. Two days after birth he had his first surgery to fix his back and and seven days after that he had his shunt placed. We spent a total of almost 11 days in the NICU.

A month after our stay in the NICU Jonah's shunt became clogged and he had to go in for another surgery to revise it. Now we have had no more shunt issues! At about 3 months Jonah's legs were casted to help with his clubbed feet. One foot was worse than the other and that one was casted up past the knee..the other only past the ankle. He had to have casts for about 3 months and now we are on to the boots with the bar between for 16 hours a day. We visit the Spina Bifida Clinic once every 6 months and see over 16 specialists!

Now Jonah is almost 8 months old! He's weighing over 22lbs and over 27in long. He goes to the bathroom on his own and has absolutely no issues there. Jonah has been eating solids now for over 3 months and he eats 3-4 meals a day! He learned how to sit and roll at 6 months and now stands with some help. Pretty soon he will be fitted for his AFOs to help him stand more. He recieves physical and occupational therapy through the Birth to 3 program and they come to our home every Tuesday.

We have been soo blessed to have such a smooth journey! Honestly there are days when I forget he even has Spina Bifida and strangers never notice it either because he is soo good natured! Jonah loves to laugh, sit, babble and scream Da-Da! I have never met a happier baby in my life! He is our little hero and I am HONORED to have such a beautiful blessing!

To read more about Jonah, visit his website at

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