Catch up post...Paxton's surgery

I am super behind in blogging. I am going to go ahead and post some pictures from Paxton's surgery. I am so very thankful to have all of that behind us. Here's the short version of our experience:

The surgery lasted almost 7 hours. Several wonderful people from church came and sat with us in the waiting room. Mom and Dad were also here for the surgery. It really helped us get through the waiting time. As a parent it was pretty brutal. I have never been apart from Paxton for seven hours. Not even close to seven hours. It helped so much to have people sitting and visiting with us. It really helped the time pass. Thank you so much Mom, Dad, Doug, Betty, Jeanne and Shannon for being there with us. You will never know how much it meant.

Dr. Aldana said that the spinal cord moved up about 1/4 of an inch when he was able to release it from the lipoma. This was evidence that it was already putting quite a bit of strain on the spinal cord. We are so thankful that we found this so early because it probably would have caused Paxton some serious problems. They had to remove two bones in his back for the surgery. The doctor was able to place one of them back in. I wonder what he did with the other one? :)

Paxton did so well that when he came out of surgery he did not have to go to the PICU as had been planned. After time in recovery he was able to go to a regular room. It was very difficult to see Paxton when they brought him back to me. You'll see from one of the pictures below how swollen his face was (they had warned me that this would happen so I knew it was normal).

I stayed with Paxton in the hospital and Greg was there as much as possible in between being with the kids. Mom and Dad were so helpful keeping everything going smoothly at home.

After only 4 days in the hospital we were able to come home. The biggest challenge after surgery was that we had to keep Paxton off his back for 3 weeks. Not easy to do with a 4 month old! He also could not be in a car seat for 3 weeks. That was also not easy to do, but we made it work.

God has been gracious to us and 3 months later Paxton is as healthy as can be. I look forward to getting my blog updated with pictures of my AMAZING family and the fun we have been having the past several months.

Enjoy the pictures...many more to come in future posts!

Before surgery

Cute baby hospital gown. I should have taken his diaper off so you could get the full effect!

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Look how swollen my little baby was when he came out of surgery. Yes, I cried...wouldn't you???

Recovering with Daddy

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Feeling so much better!!!

Incision 2 days post op

A pair of shoes...

A pair of shoes.

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.

I am so thankful that I am learning to walk in my "shoes" without them hurting so much. I am praying for those whose feet are hurting during this holiday season. XOXO

It's time...

We've reached surgery day. In a few hours we will be driving to the children's hospital for Paxton's surgery. Here's what I know:

Surgery will begin at 8:30 am.

It is scheduled to last for 4 hours.

Paxton will go to recovery for about an hour.

Paxton will be moved to his room in the NICU where I will be waiting for him.

We've been told we will be there for 4-5 days.

Please pray for our entire family and especially the surgeon and anesthesiologists as they perform this delicate procedure.

I'll update as soon as I can. I'll be at the hospital with Paxton 24/7 so I'm not sure when I'll be able to post. My parents are here until the weekend, so maybe they can update for me.

XOXO, Shannon

BoBo goes to school and almost doesn't come home!

It's amazing how much children change in a year!

This year:

Last year:

To sum up today:

Bailey loves her new teacher and had a great day.

Bailey rode the wrong bus home causing extreme panic for mom. I promised her I wouldn't say anymore so I won't...but you can imagine!!!!!! Tears all around!

Celebrate and a surgery date...

Let's get the less pleasant news out of the way first:

Paxton will have surgery on his spinal cord on September 9th at 8:30 am at Wolfson Children's Hospital here in Jacksonville. Dr. Philipp Aldana will be performing the surgery. PLEASE begin praying DAILY for the surgeon and for our family as we prepare mentally and emotionally for this surgery. I feel sick even typing about it for now, so I choose to move on to the celebrate part of the post...

August 8th we celebrated Greg's 37th birthday (boy is he old!!!! HA! HA!).

On August 17th Greg and I celebrated 13 years of marriage. We celebrated the same way as last year...with the kids at Cheesecake Factory, except this year it was a party of 5 instead of a party of 4!!!

Enjoy the pics!

This week we also celebrated my brother Parish and sis in law Vera getting to meet Paxton for the first time. We also enjoyed spending time with our furry nephew, Zeus! They left this morning to head back to Arkansas. We miss them already!

It's hard to believe that school starts Monday for Bailey. I'll post the mandatory 1st day of school pictures sometime next week. I also need to catch up on our 2nd trip to Daytona and my parent's visit. I'll get right on that in all my free time! :)

XOXO,

Shannon

Paxton pictures and a medical update

On Tuesday we went to the pediatric neurosurgeon. The appointment went pretty much as we had expected. The MRI showed a fluid filled cyst which the doctor said is an indication that the tethered spinal cord has already started effecting the spinal cord. We signed the consent forms to schedule surgery and are waiting to hear from the scheduling people. From what we understand surgery should be in early September. The surgery will be pretty straightforward lasting 4 to 5 hours and then Paxton will be in the hospital for 4 to 5 days. It can be done here in Jacksonville. We feel really good about the neurosurgeon. His name is Dr. Philipp Aldana if you want to google him. His bedside manner was really comforting and we feel confident in his abilities.

We will also be visiting a urologist to see if any damage has been done to the area of Paxton's spine that controls his bathroom functions. Please pray that everything will appear to be "working" correctly. Outward signs seem to show that he is ok, but it's hard to tell in a 4 month old and we may not fully know until we get to the age for potty training.

In the upcoming days Greg and I will be donating blood in case Paxton requires a blood transfusion during surgery which evidently is a possibility. We figure we'll go ahead and donate and then WHEN HE DOESN'T NEED IT it will benefit someone else!

While I am emotional about all of this, I know that Paxton will be in good hands. The surgery is necessary so it's just one of those things that you have to push through as a parent. Olivia's 2nd birthday is just around the corner and I know that the timing of Paxton's surgery in relation to her birthday will be difficult. Thankfully her birthday is on a weekend so I feel sure that his surgery won't be on the exact day. I just couldn't bear it if they had fallen on the same day.

I am including some recent pictures of Paxton. He weighs about 14 pounds now and is the sweetest baby you could imagine. He NEVER cries, only whimpers a little when he's hungry (of course he's held so much that he really doesn't have much of a reason to cry!). He is so snuggly and smiles and laughs all day long. No exaggeration here. If he's awake, he's smiling!

A lady at WalMart told me "He sure is a smile-ical baby!" Bailey and I have laughed and laughed at that word! Enjoy the pics and continue with your prayers for Paxton and our surgeon Dr. Aldana. I'll update my blog with dates as soon as we find out anything.

Sweet baby boy!

Paxton with my dad's hands...love this picture! Taken in Bailey's room, hence the pink rug!

Paxton at the beach! Ready for some whale watching!

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!