Love each day..

Having Carter has changed my life drastically.  Most of you probably don't know that I hold Carter most of the night and sleep. Yes, you read it right I hold him. He is just a little rotten. We used to always say we wouldn't spoil our kids, but now we thank God each and every day for the opportunity to spoil and make this boy as rotten as possible.

Before Carter was born we were told how tough it would be. That there is a much higher divorce rate in couples with special needs children(I still have a hard time with the idea that Carter has special needs). I am here to say that the word tough is an understatement! The worst pain in the world is for your child to be hurting and yelling out mama, knowing there is not a thing in this world you can do. It's not only a mental, but physical pain. Pain that makes you sick to your stomach. Those are the times I would like to do more than spit on the devil. They are the times I want to scream, yell, and curse. Although, I have learned over the past few months it does no good. I think it just gives the devil another opportunity to creep into your life. I have learned more self control. I have learned to breathe and say a prayer. A prayer where I specifically ask God for help. Ask him for what it is Carter's little body needs. The hardest part of all of this is that Carter is 100% neurologically normal. He is a normal 17 month old trapped into a not so normal body. he is not at the age where he understands what is going on, but he recognizes where he's at.

Over the past 17 months Carter's journey has taken us places we never thought we would go. It has allowed us to feel feelings we never knew existed. It has shaken us to our core. It has taught us to love one another in ways we never did before. It has taught us to rely on Jesus more than we ever knew was possible, but most of all it has shown us the power of our almighty God. He is an awesome God. He created Carter perfectly and one day his little body will catch up.  We are constantly adding new experiences to this journey and we are about to add many more.  We hope to travel to Cincinnati Children's Hospital later this week or next week.  Our surgeon is currently working with them doing all of the preliminary procedures.  We are expecting to do a medical transfer and I have to say we are looking forward to it.  We are completely ready to figure out what is going on with Carter.  There are so many unanswered questions and things we do not understand right now.  We are thriving knowing God created Carter just the way he is and he knows exactly what he needs.  We are extremely thankful Carter is doing so much better as far as pain is concerned.  I am asking for all of you to continue to pray for Carter.  Pray for wisdom for all of his care givers and guidance for Brandon and I.  Although we may not always understand, we know his plan is perfect.  To him be the glory!

Carter's Facebook Page!

And Jesus said to him,"I will come and heal him."

Carter is making steps in the right direction.  Yesterday morning Carter's incision, where they had to cut him to place the GJ tube started draining.  The on call surgeon came in and removed the steri strips.  The incision immediately opened and infection started pouring out.  It was extremely painful for Carter, although it has made a HUGE difference.  Within 45 minutes Carter's color started to improve.  He started to try to sit up and even wanted to play for a few minutes.  We had visitors later that day and Carter put on a show.  He waved and smiled and even passed around his toys.  He is gradually getting back to himself.  Praise God!

Carter is still not completely pain free, although he is a million times better!  Carter's incision is still draining.  He seems to be having more "normal" after surgery pain.  It has been absolutely wonderful to see him wanting to sit up, smile and play.  Our surgeon is working out all of the details to get us to Cincinnati Children's Hospital.  We are praying Carter will be able to transfer in the next week or two and we can get him started on the right track.  

Your prayers have been very evident in the past 48 hours.  Carter still has a long way to go and we are asking for continued prayers.  Please pray God will continue to heal Carter.  Carter will fight the infection and have a smooth transition to Cincinnati Children's.  We are truly blessed to have such great followers of Carter's Journey!

 Matthew 8:7 And Jesus said to him, "I will come and heal him."

Update 1/28/12

Carter is still very sick.  He is still in almost constant pain, or maybe I should say misery.  He still has the NG tube in his nose and it is still pulling out a lot of gastric secretions.  Carter's GJ tube is open and it is also draining a lot of secretions.  We attempted to feed Carter yesterday and he did not tolerate it.  He got distended, vomited and once his J-tube was reopened all of the Pedialyte that we had "fed" him came pouring back out.  Carter has also developed cellulitis around the GJ tube insertion site.  Even after antibiotics he has continued to run a low grade fever.  Our surgeon has a feeling that Carter's body is just not tolerating the GJ tube and has decided it will be in Carter's best interest to remove it sometime next week.  He will insert a small feeding tube just to keep the hole in his abdomen open.  

     Carter is still extremely sick and our surgeon along with Brandon and I have decided to yet again look for answers.  The resources Carter needs are just not here in Mississippi.  After doing a lot of research, we will possibly be traveling to Cincinnati Children's Hospital in the next few weeks.  Cincinnati Children's is known for GI excellence and is rated the best Children's Hospital in the United States for GI problems.  I am not sure if Carter will be discharged so we can fly as a family to the hospital or if he will need a medical transfer.  Carter is in so much pain and requiring so much pain medication right now that discharge at this time is not an option.  Hopefully, after Carter's JG tube is removed the pain will go away Carter will stop the large amount of vomiting and will be discharged.  If this does not happen Carter and I will be airlifted to Cincinnati Children's.  I am ok either way, as long as Carter is not in pain.  The next few weeks are going to be extremely busy for Carter.  Please continue to pray for him.  Pray for the pain to subside and for wisdom for all of the new Doctor's we are about to meet.  I will never be able to say thank you enough for all of your prayers for Carter.  Please keep them coming!

Carter finally got four hours of rest last night!

The past two days...

The past two days have been hard. Carter is still dealing with pain and has now started vomiting at least every two hours. He is absolutely exhausted. Yesterday we thought his NG tube, that is keeping his stomach decompressed may be the problem. Carter stomach is so small, we thought the NG tube may have been too much for it to handle. We pulled the NG tube out and Carter perked up (opened his eyes and sat up in bed). It only lasted for about two hours, then Carter started vomiting and his NG tube had to be reinserted. It is still draining a lot and Carter has vomited multiple times even with the NG tube. Carter's heart rate has been running higher than normal and he has kept a low grade fever, although his blood work and all of the other tests have come back pretty much normal. We have no idea what's going on with him, but I know something is not right. We are praying all of this will soon subside and Carter will be able to get some much needed peace and rest!


My presence will go with you, and I will give you rest. (Exodus 33:14)

Grateful Days...

Carter has had a tough day today.  He has spent most of the day and last night dealing with pain issues.  He is receiving pain medication, although it does not always seem to help.  Thankfully he has slept most of the day, every time he wakes up he cries out in pain.  It was not until this afternoon that he woke up without crying, so hopefully we are on the right track and the pain will soon subside.  Carter went for a barium study to make sure his J tube was in the correct place today.  It was in the right place and if Carter's pain is under control tomorrow we will start trying to feed him through the tube.  

It's the times like this that make me so grateful to have Carter.  It makes me grateful for the good days, the days Carter gets to crawl all over the house and chase our dogs.  I know to some this may sound a little crazy but, all in all I am thankful God chose Carter to have OEIS Complex.  I could not imagine another child, a child without support going through all of these things.  It breaks my heart to think that there are children going through things similar to this, without a Mommy laying beside them giving them kisses and telling them how strong and how loved they are.  Carter is strong and has so many people praying for him, people I do not even know.  The power of prayer is awesome and I know that is how Carter has came this far.  The scripture says God answered the prayers, not of the sick and dying but of the friends of the sick or dying.  I know that even through this extremely tough day God has a plan and your prayers are working, so please keep them coming!

 Here are a few pictures from the afternoon, when Carter woke up feeling a little better.

 I think I see a little smile!

 Laying with his friends, Bob and Larry!

G-J Tube Placement

Today Carter had a G-J tube placed.  This is a feeding tube, that has access to Carter's stomach and his intestines.  Carter did well with the surgery.  He is having some pain, but nothing unexpected. The doctors, nurses, and of course Mama will continue to monitor and help manage the pain in order to make the healing go as smoothly as possible.

Over the next day or two we will start feeding Carter through the J portion of his tube. The feeds will start slow, 5cc/hr, and slowly increase over the following days. The feeds will also start as clear liquids, Pedialyte, before progressing to a formula regimen.  The goal is for Carter to tolerate the J feeds and get off of the TPN and lipids.  Please pray for Carter to tolerate the J feeds.  We thank you for all of your prayers and we know that God will continue to do big things in our little man's life. 

Having a good time before surgery...

Make a Difference 5k

Our sweet friend Jennifer McInnis is getting a team together to run/walk in the Make a Difference 5k for Blair E. Batson Hospital, in support of Carter. Jennifer has a baby waiting for her in Heaven, who passed May 2009 of a condition very similar to what Carter was born with. The team will be "Team Carter". All proceeds go to benefit Blair E. Batson Children's Hospital. The 5k is February 18th. If you would like to run or walk or know someone that would please contact Jennifer @ JenniferRMcInnis@gmail.com or me @ meaganlcline@aol.com. Thank you all so much!!!

For more information go to:
http://www.southgroup.net/5k-run.htm

To register online go to:
https://www.racesonline.com/index.cfm?reg_type=1&race_id=7162&fuseaction=public_reg.reg_form&init=true

Or print and mail this registration form:
http://www.mstrackclub.com/Results/2012/SouthGroup/SouthG12f.pdf

Happy 17 months Carter!!!


Where did he go?

Update...

Carter did great with the surgery today. Our surgeon was unable to place the NJ tube, due to the shape of Carter's little stomach. This means Carter will have a GJ tube placed on Monday. Carter's abdomen and stomach will both have to be cut to place the tube. It is a pretty intense surgery. A healthy child would usually stay a week after the surgery, but we all know Carter so I'm expecting 2-3 weeks. Hopefully, he will tolerate the J feeds and we will come home with no TPN, lipids or cords 24 hours a day. I can't wait to let Carter crawl around freely without having to follow two feet behind him. Please continue to pray. Not only for Carter, but our surgeon and everyone involved in Carter's care. The past few months have been extremely tough for Carter. Although, we know God has a specific plan for Carter and one day we will be able to see it. Until that day we will praise Him. We are so thankful and honored He chose us to take care of Carter.

We are home...

We had a great flight home on Monday, Carter slept the entire flight! We met with our surgeon Tuesday morning. Carter really needs to get off of the TPN and lipids (IV nutrition). So for right now the goal is to have him tolerating formula. One of the main reasons he needs to tolerate formula is not only adequate nutrition, but for healing factors. If Carter was to have surgery right now it is very likely he would not heal properly, which would lead to more complications. Today our surgeon is going to try to place another NJ tube. Carter vomited the one he had placed on Friday at Johns Hopkins. This will be the third and final try to get the NJ tube to stay in place. If it does not stay in place, Carter will have a GJ tube placed next week. The surgery to place the GJ tube is pretty intense so we are trying to make sure he can tolerate J feeds before we do it, this is why he is having the NJ tube replaced today. Hopefully, this NJ tube will stay in place and we will have more time to wrap our head around everything before his next surgery. Again, thank you all so much for all of your sweet messages, text and prayers! They mean so much to us!!!

I just LOVE finding pictures on my phone Carter has taken of himself, while listening to Veggie Tales!:)

Aching Hearts...

Today Carter had a NJ placed, a biopsy and his stomach and intestines scoped.  You would think that we would be almost immune to hearing very unexpected news or at least somewhat numb to it, but we are not.  It is still just as heart breaking and painful as hearing that Carter would be born with Cloacal Exstrophy.  It's an unexplainable hurt.  A hurt that I feel only a Mother or a Father of a special needs child could feel.  Our GI doctor at Johns Hopkins took a scope and looked into Carter's stomach and there the defects were.  The defects that have been present, yet unknown, since birth.  Carter's stomach is very small for his size.  When I say small I mean extremely small, too small to hold an adequate amount of food.  His pyloris, which is the opening from the stomach to the intestine is misplaced.  It is on the inner top side of his stomach instead of the inner bottom side.  This makes it extremely difficult for the stomach to empty into the intestine.  His food has to fight gravity to empty into the intestine.  I actually have not figured out how we have not had a problem with this before now or how this has not been discovered until now.  Carter was born with this, although it is not commonly related to cloacal exstrophy.

The first step is to see if Carter can tolerate feedings through the tube he has going into his intestines that bypass his stomach.  This has already shown to be a problem.  The feeding tube Carter had placed today goes from his nose through his stomach to his intestine.  The small amount of tube going through his stomach is too much for his little stomach to handle and Carter has tried multiple times to vomit the tube up.  Brandon and I, along with our GI Doctor feel that it is only a matter of time before he vomits up the tube.  The tube has to be placed under anesthesia, so it is not ideal to place the tube multiple times.  If Carter can tolerate his feedings into his intestines, he will soon be receiving a G/J tube.  His pyloris will also need to be placed in the right location at some point.

Our surgeon in Mississippi has spoken with our GI Doctor here at Johns Hopkins and they both feel confident that the surgery aspect of Carter's care can be managed at Batson.  Our surgeon will manage Carter's care with the GI department at Hopkins.  We will be traveling back to Mississippi on Monday and plan to meet with our surgeon on Tuesday.  We will discuss the next step.  Thank you all so much for all of your sweet messages, text and prayers for Carter.  They make the painful times a little more tolerable.

We have a giggle box!

We spoke with our Doctor this afternoon and he has everything scheduled for Friday at 2 o'clock.  Carter will be sedated and have a biopsy of his stomach, a N-J tube placed and his stomach and intestines scoped.  I am unsure at this time if he will have to stay overnight or not or when we will receive the results from the biopsy.  We have to take him back to the hospital tomorrow for initial blood work and his regular weekly blood work for his TPN and lipids. Carter's Doctor said he wanted us to call him once we arrived to the clinic and he would come down and explain everything to us a little more.  Today was a cold and rainy day here, so we took Carter to the Science Museum to give us all something to do.  Carter loved it!  Here are a few pictures and a very silly video of Carter! Enjoy!

Kicked back watching the IMAX film!

Johns Hopkins January 10, 2012

Carter loves looking out our hotel window! :)

Carter had two appointments today.  First we saw his urologist and he re-informed us that Carter has to be thriving, steadily gaining weight and properly receiving nutrition before he qualifies to have his "big" surgery.  We already knew this although, he did inform us that May would be an unrealistic date to set.  We met with the GI team next.  They spent a lot of time with us and really examined every aspect of Carter's GI system.  After reviewing all of Carter's symptoms and all of the test he has already had they came up with two things it could be. The first could be extremely severe reflux. The second could be that Carter stomach is not working.  Our Doctor is leaning more towards his stomach not working, although your stomach does not just stop working.  Something would have had to alter it and Carter has not had anything done to his stomach.  So that is why we have to rule out severe reflux. Although all of the tests thus far have shown that Carter is not refluxing, he will need further testing to make sure.  Our Doctor is going to work on getting everything together tomorrow for the next step.  Carter is going to have a N-J tube placed.  This is a tube very similar to what he has now in his nose, although it goes down into his intestines and bypasses the stomach.  We will be almost certain that Carter's stomach is not working if he tolerates the feedings going through the N-J tube.  Carter will also have a biopsy done of his stomach and our Doctor will look into his stomach just to make sure everything looks ok.  We expect for these test to be done on Thursday or Friday.  Although, this is not the news we were expecting to hear we are happy to finally be getting to the bottom of all of this.  Please continue to pray for Carter.  We hope to have answers by the end of the week.

We have made it to Baltimore!

We are here!  After Carter and I both got patted down in front of everyone in the Jackson airport and our luggage (checked luggage) was searched, we have arrived in Baltimore.  Carter did great.  A few minutes after take off he went to sleep and did not wake up until it was almost time to land.  As usual, he has been extremely good today.  It was in the 60's when we left Mississippi and in the 30's when we arrived here.  It's FREEZING!  It even snowed a little this afternoon.  Carter has two appointments tomorrow and I will do my best to update after them. Thank you all so much for all of your prayers and continued prayers!

 Carter did some hardcore kicking once we got to our room!

 Don't worry he has a snowsuit that he will be wearing next time we go out! 

Happy New Year!

I first want to start by saying Happy New Year! We are starting our new year out with a new hospital and new hope. Carter is still struggling to tolerate his feedings. Carter has gotten worse over the past few weeks. Brandon and I, along with our Doctor's here have decided it is time to look at other options. We will be leaving Monday morning for Johns Hopkins. We will be consulting with the GI team. Just knowing they have 15 GI specialist, I feel very confident they will be able to figure out all of this. Currently Carter is still relying on his TPN and lipids (IV nutrition) for the majority of his nutrition. TPN is very harsh on the liver, so this is only a temporary fix. Carter has been on TPN and lipids for 3 months now. We are determined to get him off of them soon. We have no idea of what to expect when we arrive at Hopkins, although we have complete peace about it. Brandon and I have recently had complete peace about this entire trip and know that God is in complete control. We both feel that Johns Hopkins is where Carter needs to be. We were fortunate enough to get appointments with our Urologist and Neurosurgeon while we are there. We were completely blessed in 2011 and look forward to all God is going to do for us this year! To HIM be the GLORY!

Carter loves to read!

Merry Christmas and 1,000 Paper Cranes!

I have a lot to catch up on in this post.  I first want to start by saying Merry Christmas! We were unable to do Christmas cards this year so this is our official Merry Christmas to everyone!!

 Carter's Best Friends...Hank and Peanut!

 Telling everyone how old he is this Christmas!

 Merry Christmas from the Cline's!

Update on Carter.  He is doing ok.  He was discharged from the hospital this past Tuesday.  He has continued to run a low-grade fever and has developed a wound infection.  We are currently treating him with IV antibiotics and it is looking better.  Carter was discharged home on TPN, lipids and NG feeds.  He was still receiving Pedialyte through his NG tube when we were discharged home.  Once we got home we switched him back to formula.  He has not been able to tolerate any formula.  This morning he started having problems tolerating the Pedialyte.  So for now Carter is not receiving anything through his NG tube.  This is not ideal, but it is ok since he is receiving TPN and lipids (IV nutrition).  I actually pulled his NG tube out this morning and I think he has enjoyed not having anything taped to his face.  It seems that no one really understands why Carter is not tolerating his feedings right now.  Brandon and I are praying for wisdom right now, not only for us, but for Carter’s many medical teams.  I know we will figure all of this out, but until then we will continue to pray.  Thank God for TPN and lipids, without it our sweet boy probably would not be here this Christmas.

Now that Meagan has given the update on Carter, I want to share a touching story from this week. One of my co-workers and her classes had been studying a unit on Japan. In their unit they read a book, Sadako and the Thousand Paper Cranes. In the book, Sadako was a young girl that was two years old when the atomic bomb was dropped on Hiroshima. She survived the bombing, but in her teen years she began having dizzy spells and learns that she has Leukemia, also called “The Atomic Bomb Disease.” Sadako’s friend, Chizuko, tells her that if she will fold 1,000 paper cranes the gods will be pleased and grant her one wish. Chizuko folded the first crane for her and Sadako began working on the rest. Unfortunately Sadako passed away before she folded 1,000. She was able to fold 644, however.

After reading this book, my co-worker and her classes decided that they wanted to fold 1,000 paper cranes for our family and especially Carter. They worked diligently for over a month and met their goal. On Monday evening my co-workers hung the cranes in my room and prayed that Carter would come home for Christmas and get well. On Tuesday morning not long after reading the letter she and her class left for me, I received a text message that we would be bringing Carter home that day. When I could finally pull myself together, I went down to her classes and told them how much I appreciated all of their hard work and more importantly their prayers. I emphasized that while the cranes were awesome, it was their prayers that brought Carter home. I want to thank each and every one that folded a crane or allowed their child to do so. Again, I want to thank each one of those kids and co-workers for their prayers. Prayer is powerful, especially when so many gather to do it. Our family loves each and every student and co-worker at Brandon Elementary School. May God bless each one of you and your families this Christmas season.