Tethered Shmethered

When Paxton was born we saw that he had a sacral "dimple" near the top left of his booty crack. I thought: Only my kid would have an extra crack! At least he'll do an awesome job mooning people!

We were told that this is usually no big deal. People have it. But...sometimes it can be a sign of a problem with the spinal cord.

At his newborn checkup we talked to our pediatrician about it. We were told that it can sometimes be a signal that the spinal cord is tethered. Because this is neural tube related, (as was Olivia's birth defect, although hers was different) we decided, with our doctor, that we should have a precautionary ultrasound done at the children's hospital to rule out any problems.

Well...the ultrasound showed that we needed to look into the issue further. The next step was to schedule an MRI. Normally this isn't a big deal, but for a 2 month old it means that they have to be put under with anesthesia because they obviously cannot be still for the amount of time needed to perform the procedure. It had to be done and Paxton did great. I did OK. :( It's not easy for a mom to hand over her child to health care professionals and then sit in waiting rooms!

We received the results a few weeks ago and they confirmed that Paxton does have a tethered spinal cord. This means that his spinal cord does not move freely up and down as he moves. It is attached by a lipoma (fatty mass) to tissue or bone and can be pulled and strained as he grows. If the cord gets strained and damaged it will cause permanent problems with his limbs and possible issues with bathroom related functions. The solution is surgery.

We will meet with a pediatric neurosurgeon on August 11th and will know more specifics after that appointment. The MRI also showed that Pax does not have a coccyx and that a part of his sacrum is either absent or not formed correctly. I am not sure if any of that will be addressed during the surgery. Again, I'll know more after August 11th.

Looking at Paxton and being around him you would never see any signs of these issues. He kicks, moves, bears weight, and does everything 100% normally. This gives us great hope that no neurological damage has already been done and that he will not have any problems after the cord is untethered. The surgeon we are seeing has been recommended by the head of neurosurgery at the Mayo Clinic and we feel that he is a good candidate to perform Paxton's surgery.

I am leaving out a lot of the technical terms and info. Hopefully this all makes sense.

How am I doing? I am sad. I am frustrated. I have been angry. Right now I am in information gathering mode and am ready to do what it takes for my sweet baby.

Honestly I do not understand why this has happened...why we can't just have a "normal" time with our baby! However, I DO know that God is faithful and he will watch over us and guide us in making good decisions for Paxton. I am not angry with God. I am angry that Satan tries to use this situation to make me fearful. Satan knows that I have to work hard not to let him get a foothold when it comes to my kids. But guess what? I'm on to him and I AM NOT going to let him get a hold of me. Too bad so sad Lucifer!

Thanks in advance for your prayers. I know that they will be going up for us!

XOXO,

Shannon