Saturday, October 20, 2012

Spina Bifida Awareness Day 21 Michael James' Story

Dear Life, 

Our next family belongs to the support group I belong to. Their little guy is adorable...and this story is a little different in that they didn't even know they were going to have a child with extras until he arrived.  

Our little boy is "Michael James" he will be two next month :). He is our first boy after two girls, so he had two big sisters to join in the planning and excitement of my pregnancy. We couldn't be more thrilled to have a baby on the way, and according to all tests and ultrasounds, he was perfectly healthy. We made a chain to count down the days when they got to meet there baby brother, and it was all we talked about for 9 months :)! 

The day finally arrived when it was time to have our baby boy! After a normal natural birth they put him on my chest for a quick glimpse and then rushed him off to clean him up and weigh him. I remember thinking that was strange because with my girls I got to see them a few minutes first. Then they told me that he has a spot on his back so they would be taking him to the nursery to be evaluated. I assumed it wasn't a big deal. I waited, and waited, and waited, still in the delivery room but they never came back. The clean up lady came in and I said "Do you know when I get to hold my baby?" The lunch lady came in and I said "Do you know when I get to hold my baby?" Nurses were rushing around messing with equipment and I said "Do you know when they're coming back with my baby?" Finally the delivery nurse came back and said we were going to the nursery to see our baby. That was where my husband and I were surrounded by a team of Drs who informed us that our baby had spina bifida. With a medical background job in my past I knew very well what spina bifida was and my heart just sank for my baby boy. The moment seemed to be slow motion as other parents smiled and showed their babies to family through the window. They told me he wasn't going to be leaving the nursery, I couldn't pick him up, and he would be transferred to the NICU that evening.
 I loved him with every inch of my soul, I loved him just the way he was, but I was so worried that one day he would want to do things that he couldn't do. My heart broke to think of our little guy strugglig. It broke even more to not be able to hold him and tell him it was going to be okay. But things worked out later that they let me take him to my room and hold him on his side until late in the evening. I shared him a little lol, but I didn't put him down most of the night!  

The first few months home were difficult. He was harder to figure out and seemed to be uncomfortable. After meeting with his specialists we learned he has lypomyelemeningocele which is the most rare form. A fatty lypoma (tumor) was in his spinal cord and also in his back. The part where the cord was open left his nerves to be entangled in the lypoma. He also had a tethred cord, and bladder complications. After starting his bladder regimen he was a much calmer happier boy :)! He had two tethered cord surgeries in the first 15 mo. of life. His milestones were way behind, still not being able to sit very long even on his first birthday. We wondered if he would ever be able to pull himself up. But slowly and in his own timing he began achieving his milestones! Each one was a celebration, and till this day I still don't think of milestones in the same way anymore! The moments are just that much more sweet I guess :)!
Today Michael James is walking with AFO's, and sometimes uses his walker for long distances. I am still amazed how well he is doing! I can't believe that in the spring we were struggling to get him to take steps with his walker, and now in the fall he's walking without it! He tries to walk in circles to play ring around the rosies, and is beginning to climb! He is a happy, fiesty, go getter and if he wants to do something he'll figure out his own way to do it if he has to! He tromps around trying to keep up with the other kids, and when he falls he says "Oh!" and he gets up and swings his arms and looks around as if to pull if off that he's cool and meant to fall! 

Spina bifida is a condition that can cause many adverse complications. But for our son, spina bifida is not going to get the best of him! He's a normal happy little boy, who was made perfect and precious in Gods eyes! He is a blessing to us every day!

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