Carter's Journey

Happy Valentines Day!

We are celebrating Carter's first Valentines Day at home!
His first Valentines Day was celebrated at Blair E. Batson recovering from spinal surgery.

His second Valentines Day was spent at Cincinnati Children's Hospital.

His third is being celebrated at HOME!!!

Can you tell he loves Toy Story?

Thank you for all of your prayers!

Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven. Psalm 107:28-30

Learning to pray...

Has it really been a year? I get tears in my eyes just thinking about it. On this day last year Carter was airlifted to Cincinnati Children's Hospital. I flew with Carter in the small jet supplied by The University of Alabama. Brandon flew commercial and arrived at the hospital just hours after we did. It was a very scary experience. We were leaving the hospital that had been home to us for some time. The hospital where I worked, where everyone knew Carter and the hospital we called home for many months. We were also leaving behind a wonderful Doctor. A Doctor that stuck by our entire family's side through it all. I can honestly say I do not think Carter would be alive today without him. We will never be able to tell him thank you enough.

We were leaving all of these things behind in desperation for our son to survive. We had already travelled to another leading medical facility where we were given little hope. We were desperate! When we arrived in Cincinnati, multiple Doctors from different specialties came to examine Carter. I will never forget one of them. She was a younger lady and she introduced herself as being part of the transplant team. At this point no one had officially said Carter needed an intestinal transplant or that it would really be an option for him. She came in and sat down on the bed beside me and Carter. She told us how glad she was that we arrived safely. She then began to talk about the intestines and the initial steps to working towards an intestinal transplant. I looked at her almost cross eyed and said, "intestinal transplant?" She then realized that this was the first time it had been discussed. She immediately apologized and walked out of the room. So, there I sat with Carter alone in an unfamiliar hospital in a town that I had never been to before. I was completely exhausted from being up day and night for months in the hospital with Carter before being transferred. My husband was on an airplane with no way to contact him. I sat there looking into my sweet little one-year olds eyes. His little body was so pale and so tired. That's when I began praying for God not to keep him here with me, but for God to do what's best for him. For months I had selfishly prayed for God to keep him here on earth with me. I did not want to live without him and would do anything to keep him here. I begged and pleaded with God. It was until that moment, on one of my weakest days I realized what I had been doing. I wasn't praying for God's will. I was praying for my own will. Isn't it amazing how God will come to you in your weakest moments? As soon as I started praying for God's will I began to feel relief. I knew we were in the right place and that God would take care of Carter.

So, here we are a year later. I have a 2 year-old doing flips off of the couch laughing and running everywhere. I am thankful God had other plans for him. To Him Be the Glory!!!

Last years BIG trip!

How could it be...

I am not even sure where to start. I am not even sure I should post this, but have I felt a sense of guilt by not letting everyone know. Carter has not been feeling good for the past few days, so I decided to take him to his Pediatrician to make sure everything was ok. We are still not sure exactly what's going on with Carter, but are praying its just a virus. We did however receive the results from our pediatrician on Carter's MRI he had back in December. We are still waiting to hear Carter's Neurosurgeons opinions, but are completely shocked and lost for words from the report our Pediatrician has received. I will first start out with Carter's spine. Everything seemed to be the same as it was last year and there are no real changes. This is great news. This means his spinal cord has not retethered and the repair of his myelocystoceles is stable. We were thrilled to hear this. The report of Carter's brain was not so great. It was heartbreaking, painful and I honestly got the same knots in my stomach the day I did when Brandon and I found out about Carter's birth defects. The MRI of Carter's brain showed there was an absence of his septum pellicidum. Absence of his septum pellicidum, meaning part if his brain is not there! What in the world?! How is this possible? How did Carter have a major spinal surgery at 6 months and this was not picked up on? How in the world did I have an ultrasound twice a week for the majority of my pregnancy and this was not noticed? How has my precious child survived this long with EVERY one of his organs being effected in some way by these awful birth defects? How did no one know?! These are all questions Brandon and I have asked over and over again.

We are still in shock and we are praying for a miracle. We have had many sleepless nights and are still just really confused. I think most people expect us to be angry with God, but we are not. We are so thankful God has given us this precious child. He has trusted us with so much and since the beginning we have promised to share our gift and give God all the glory. Although our hearts are completely shattered, we will not give up. This is just another journey. It is going to be a journey through a very unknown land. Neither Brandon or myself know much about the brain. Being a nurse I know some of the anatomy and a few things, but absolutely nothing about the septum pellicidum or absence of the septum pellicidum. I have done some research on my own and it seems like there is a wide spectrum of living without a septum pellicidum. Some children do not live past birth, some are in a vegetative state and some are mentally stable and live without any impairments what so ever. A lot of the things I have researched about it do not apply to Carter. In fact the only thing I have read that may apply to Carter is it can affect speech. The only real delay Carter has now is speech. He is still really struggling to talk although he is trying really hard. He understands everything we say to him and can even sometimes answer with sign language. He communicates, but he just does not talk. It kills me to think that he could want to say something and honestly not have the ability to say it. I have had a hard time finding a lot of information on the absence of the septum pellicidum and am looking forward to hearing from Carter's neurosurgeon at Johns Hopkins. So for now we will wait to hear from him. We have so many questions. I don't want to say anything for sure until I hear from him and get his opinion. Honestly all we know right now are the interpretations from the radiologist that performed the MRI.

We have known about it for a little bit now, but decided on processing it before telling anyone. No matter how hard all of this gets we will always love Carter with our entire hearts and we will both do whatever it takes to get him the best care possible. I know it might sound crazy, but I think things like this just make me love him even more. They make me realize just how special God really made him. If the MRI results are correct this means that Carter has survived 2, almost 2 1/2 years, with cloacal exstrophy and missing an area of his brain. As a mother who has been at his bedside through it all I just don't see how it can be possible. We are completely hurt, lost and confused for Carter. I am so hurt that he has to go through something else. I know God has a plan, but I would be lying if i said i did not want this for my child. He is such a sweet baby. He NEVER cries and loves life. He does not deserve this. No matter how hurt his little body may be God has him in his hands and we will continue to praise him for ALL of the blessings he has given us. Please pray for peace and patience as we wait to hear from Johns Hopkins. Thank you all so much for all of your prayers and as always.. To Him be the Glory!

Christmas... Really, Really Late!!!

I'm sorry! We have been extremely busy and I have not had enough time to update since before Christmas. Carter had a wonderful Christmas. It was the best yet! His favorite present was his Toy Story figurines. After opening them it was over. He only wanted to play with them and did not care about anything else. He still plays with them everyday! We also watch Toy Story at least once a day. He is still a huge Veggie Tales fan, but I have to admit it has been nice to have a Veggie Tales break!!! I hope everyone had a wonderful Christmas and a Happy New Year!!
I think pictures say a million words. Here are a few pictures from Christmas time last year and a few this year.
Last year...

This year...

Isn't our God Good?!
Luke 2:9-14
An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests."

MRI update!

Carter did great with his MRI. He was sedated for about 3 1/2 hours, so he was a little grumpy and drowsy last night. He woke up this morning ready to go and worked really hard with his speech therapist. The University of Mississippi is going to send the results to Carter's Neurosurgeon at Johns Hopkins, so I do not plan on getting the results for a while. Thank you all so much for all of your prayers!

Carter's self portrait he took on my phone! Cheese!

MRI 12/18/12

Carter went back for his MRI about an hour ago. It should take about 3 hours, so right now I am playing the waiting game. They used a mask to put him to sleep and then they were going to put him under general anesthesia. He fought so hard! It took me the Anesthesiologist and a nurse to hold him down while they let him breathe through the mask. They said he set a record for the longest fight. Poor baby has been sedated too many times!

The MRI is to make sure his spinal cord has not re tethered and to make sure there are no other spinal defects that could be causing the unexplainable vomiting. They are going to send the images to his Neurosurgeon at Johns Hopkins, so I am not expecting results any time soon. We are praying everything is stable and we can completely focus on his "big" surgery in April. Thank y'all so much for all of your prayers for our sweet little gift! I will try to update later this afternoon.

Here are a few pictures from this morning...

Just an update...

I haven't updated in a while and I just wanted to catch up! Carter has been doing great. He did catch the flu and was down for about a week, but thankfully he bounced back pretty quick and is doing really well now!

I spoke with our child life specialist at Johns Hopkins yesterday. She is helping us get everything ready for Carter's big surgery in April. She submitted all of our information to the Children's House and Ronald McDonald house. These are both homes that we may be able to stay at while we are there. We are praying we will get into the Children's House. It is within walking distance of the hospital. The Ronald McDonald House is not within waking distance and we would have to take a shuttle back and forth. Hopefully the Children's House will work out. She also gave me a few more details about the surgery. She told me they will wait and put a PICC line in Carter until the day of surgery. She also said that I will be able to carry him back to the operating room and stay with him until he is fully asleep. I know that this is just a small thing, but knowing that Carter will be asleep for weeks it really warmed my heart!

I decorated for Christmas the day after Thanksgiving and Carter is in love! In love with the Christmas Tree! He is still not talking, but just by looking at him you can tell exactly what he wants to say. He grabs my hand and leads me to the tree about 50 times a day. We stand by the Christmas tree using our excited sign language and admire its beauty. Carter has even been nice enough to add a few of his own ornaments this year! I recently found a Woody figurine and train in the tree. They were probably the cutest ornaments on the tree.

We are really trying to enjoy Christmas and the time we have with Carter right now. Brandon and I both know that in 4 months we will be begging for this time back. In our own selfish ways we really don't want him to have the surgery or maybe it's that we don't want to have to watch the pain he is about to endure. We know it is necessary, but its hard to think about the little boy that holds our entire heart having to endure any pain. The only thing that brings us comfort is our Faith. Our Faith that has already brought us and especially this sweet boy through so much. Faith that will bring us through again and Faith that no matter the outcome God will be with us. To Him be the glory!!!

Carter with his "hospital" tree. That I got to put up in our dining room this year! Yay!!!

Examining his Bob and Larry Christmas lights!

Silly boy!

My very own Elf dancing in the yard!

Happy Birthday Dadee!!!

Happy Birthday to my wonderful husband...

and Carter's Dadee! We love you so much and I could not imagine spending the past 10 years with anyone else!

Happy Happy Birthday!!!

Happy Thanksgiving!

Today we celebrated Thanksgiving! We are so thankful to be home from the hospital this year, but we are most thankful that God chose us to be Carter's parents. We could honestly not imagine our lives without him or without having him just like he is. He is absolutely perfect and we love him so much! The Christmas tree in the picture below was given to us by Brandon Elementary School. They gave it to us last year, along with other decorations so Carter's hospital room would be bright and cheerful for the holidays. I remember telling Brandon I wasn't sure what I would do with the decorations if something happened to Carter? He was so sick and no one could figure out exactly what was going on with him. The decorations would be too hard to look at if something were to happen. So, yesterday when I setup the Christmas tree in our dining room I gleamed with pride. It brought back so many emotions and truly made me thankful for all that we have today. Thank you Brandon Elementary for adding light into our very dark hospital room. No matter where we are I plan to always put up Carter's hospital tree.

Special Child
by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

Happy Thanksgiving from the Cline's!

Happy Halloween from Bob the Tomato!

Happy Halloween! Carter is absolutely obsessed with Veggie Tales, so it was only appropriate for him to be Bob the Tomato. He loved it! We took him to see my family in Florence and to a subdivision in Brandon. He had a great time and walked almost a mile! I hope everyone had a great Halloween! Here are a few pictures of my very cute Bob!