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

Catching up...June and a little bit of July!

This is my attempt to recap our summer so far...I wish I could post all the pictures and be more descriptive, but if I did, I'd never catch up!

JUNE

Greg went to King of Prussia, Pennsylvania for a week. It was for his job, so I don't have any pictures of that! We sure did miss him while he was gone. He got home just in time for Bailey's birthday! He'll be going back to KOP, PA the first week of August. :(

We celebrated Bailey's 8th birthday with an American Idol Slumber party. Those girls could really karaoke some Taylor Swift songs! Paxton even had a contestant number. We were so glad that my parents could be there to help out.

You know it's a good party when someone ends up with underwear on their head! I think they were playing truth or dare.

We traveled to Atlanta to see family and to introduce Paxton to his Grandma Beep Beep, two of his uncles, and lots of cousins for the first time!

While there, we were also able to introduce Pax to his great grandmother, Nanny Bug. He also met one of his many great aunts!

Greg's cousin Cheryl came from Wichita to visit us. Bailey and Mira had a blast putting on fashion shows and Beckham enjoyed having Adam as a "new" buddy. We all went to St. Augustine for the day and had lots of fun! We even went to a wax museum!

After a day at St. Augustine we all went to Mickler Beach. It was Paxton's first time to be at the ocean. Beckham waded in the ocean a little too deep and wiped out (imagine that!). He had to ride home naked!

We spent a week at the beach in Daytona with my parents. While we were there the kids got to eat at Bubba Gump's for the first time. We also released a birthday balloon on the beach to honor baby Jack's first birthday. It was a fun and relaxing week.

We met up with the Ballards at Epcot for a day. It was hot, but the company was awesome. It's so nice to meet up with your friends and feel like you haven't missed a beat!

During June Paxton had his two month shots and I had my first car wreck! No pics of either of those June events - too traumatic!

At the end of June we enjoyed a trip to Seagrove, Florida to meet up with John and Stephanie Land. It was great to see them and it was wonderful for the kids to all see each other again.

Promotion was an exciting event for the kids the last Sunday of June. Beck is now a member of the 4 year old Sunday school class and Bailey is now with the 3rd and 4th graders! They each got promotion certificates that made them very proud.

JULY

Of course we had to celebrate the fourth of July! We ate Mexican food (so patriotic!), bought fireworks (Paxton picked out the chicken that lays fire eggs!), had shaved ice, and shot fireworks. A busy and FUN day for all of us! Beckham is still nervous about the loud fireworks. I gave him Bailey's fuzzy purple ear muffs to put on. I'm not sure why he ended up taking his clothes off and leaving the muffs on...oh well!

Classic Beckham!

Unfortunately we've also been very busy this summer with Paxton's doctor appointments. He had an ultrasound done at Wolfson Children's hospital to check out some stuff going on with his spinal cord. That led to an MRI to confirm/rule out spinal issues. The procedure went smoothly and he did ok with the anesthesia. It took him a little while to wake up, but we were finally allowed to take him home.

Besides the MRI this week we have been at our church every night for VBS. I guess I should say that the kids have been there every night! We've taken advantage of some kid free time and have gone out to eat several nights in a row. It's been really nice!

It's hard to believe that it is already July! Paxton is now 12 weeks old (I can't bear to say 3 months! It just sounds too BIG!). He smiles ALL the time, sleeps pretty well, and hardly ever fusses. He is such a delightful baby. We all fall in love more and more with him each day. Beckham told me that his "heart was all the way full of love" for Paxton. It makes me just melt! Bailey is very protective of Paxton and tells me at least 10 times a day that he is her "very best friend in the entire world"!

We have been busy, busy, busy since Paxton was born. I keep thinking that things will slow down, but I know better! :) We still have a lot of things left to do this summer!

I will post more about Paxton's spinal issues later. It will have to be an entire post...stay tuned and continue to pray for the little guy!