Hope...

I'm sorry it has taken me so long to update the blog! We have been super busy. Carter did great on the flight home. We flew out of Columbus, Ohio to Chicago then to Jackson. I was nervous about getting through the Chicago airport with Carter by myself, but he did great! He fell asleep on our flight from Columbus, slept through me transporting him through Chicago and did not wake up until about 30 minutes before we landed in Jackson. He even slept as I jogged across the Chicago airport to catch our flight.

Carter was extremely happy to come home. He cheered and clapped walking through the door. He took his FIRST unassisted steps a few minutes after coming home! We are so proud of him. I think the walker he used at the hospital really strengthened his legs. We are looking into getting him a walker for home. We still have hope that Carter will be able to walk by himself someday, but we know that right now a walker would open up a whole new world for him. He wants to walk so bad!



Carter is doing well adjusting. He still has a lot of stranger anxiety and does not do well around a lot of people. He is still adjusting to the fact that he does not have to sit next to me all day. He finds it funny that he can crawl across the room without me. He only had a small mat and the hospital bed to play on when he was in the hospital, so he has no idea of what to do without me right beside him. He crawls across the living room and looks back at me like come on. It's really cute! Carter still has a lot of adjusting to do, although I think he is doing really well.

Carter is still tolerating his feelings ok, although the vomiting is still present. He had an appointment today and he is still maintaining his weight. He was 23lbs. He was actually in the 15th percentile! This is a big deal. Carter is usually not even on the growth chart. We hope that Carter will continue to maintain his weight and thrive. Last night was Carter's last dose of antibiotics. The infected areas look much better than before. We hope they will continue to look well and he can stay off of antibiotics.



Carter still has a long way to go. His stomach, part of his small intestine and part of his colon are still not functioning. Please pray for them to wake up and for Carter to be able to tolerate oral food. He has recently showed more interest in food. Since his stomach is not working, he vomits everything he swallows. We are ready for the vomiting to subside and for Carter to be able to eat orally again.

Carter has done great since being home. We are really enjoying our time at home being a family of three. The power of your prayers and the Grace of our God has carried us through the past SEVEN months. There were several times I questioned wether or not I would be bringing Carter home. To bring him home off of TPN and lipids and tolerating tube feedings has been such an answered prayer. Thank you from the bottom of our hearts for each and every one of your prayers! To Him be the Glory!

The Zoo!

Carter got another pass out today and we took him to the Zoo. My brother Josh and sister-in-law Morgan came up to visit last night, so they came with us. Carter had so much fun! The Cincinnati Zoo is huge and really nice. If you are ever in Cincinnati, I would highly recommend visiting the zoo.

We are still planning on going home Monday. Unfortunately, Carter's abscess has gotten worse and the culture ended up growing staph. They changed his antibiotics yesterday and we are hoping they will take care of it. Carter has lost a little weight, but he is still within the limits they gave him. He has also had another spot get infected in one of his incisions and last, but not least he has another hernia. The good news is they are still going to let us go home! We have to return in 3 weeks to make sure everything remains stable. We will also follow up with our surgeon, urologist and pediatrician when we get home. I think we will be very busy the next few weeks, but we will be home! We are so excited and can not wait to be a family again! Please pray that Carter will fight off the infection and for safe travels Monday. Carter and I will be flying home and my mom will be driving. Thank you all so much for your continued prayers!

 Looking at the Birds!

 Pushing his stroller!

 Feeding the Goat's!

Riding the Carousel!

Beautiful Tulips!  They were everywhere!

FISH FACES!!!

 Too cool in his shades!

 Aunt Morgan and Uncle Josh

A Great Day!

Today has been a great day. The best day since being in Cincinnati for sure! Carter is doing exceptionally well. He has reached his goal feedings, his lipids and TPN were turned off yesterday afternoon and he is only requiring extra fluids at night. This means Carter only has two tubes! We have gone from six to two and hope to be going home with just one. Carter is doing so well that the Doctor gave us a pass from the hospital for four hours. Some of Brandon's family came to visit today and we all went to the park and out to eat. Carter loved every minute of it! As soon as we got in the car he started clapping and smiling and the only time he stopped was when he got a little hot at the park. Carter does not handle heat well, he get's dehydrated very easy. We really have to watch him outside. When we got back to the hospital Carter giggled himself to sleep. It was absolutely the sweetest thing. I think he realized he was going to be ok and he would be getting out of the hospital.

The Doctor's said today that as long as Carter continues to do as well as he is doing that we may get to go home MONDAY! They are going to cut his replacement fluids in half tonight and see how he does tomorrow. We are praying he will stay hydrated and we will be able to go home without the PICC line. Carter has developed an infection/abcess around his feeding tube although it is in a spot where it can drain on it's own. He is currently on antibiotics and as long as it continues to drain, he does not spike a fever and can maintain his weight we will be all set. They called our home healthcare agency today to make sure we will have all of our supplies waiting on us when we get home. All of Carter's future care will take place at Cincinnati Chilren's and John's Hopkins. They are talking with Carter's Doctors at home to make sure they are on board to help coordinate his care. We are extremely happy by Carter's progress and we are praying he will continue to thrive. Carter still has a long way to go, but we are for sure getting there! Please pray Carter will stay hydrated and will no longer need his PICC line. Please pray for him to maintain his weight and for his body to have the strength to fight off the infection. Thank you all so much for your unconditional prayers. Carter would not be where he is today without them!

Passed out!

Big Changes!

Things have really taken a turn for the better. Carter is doing much better. His intestines have started waking up and he is almost tolerating his goal rate for formula feeds. He is tolerating 45ml's an hour and just last week he was unable to tolerate 5ml's an hour. We are completely thrilled! His goal is 55ml's an hour. We hope to have him tolerating 55 within the next 24 hours. Once he tolerates 55 we will start weaning him off of his TPN and lipids. Our Doctor hopes to have him completely off of TPN and lipids by the end of this week! Hallelujah! We will then start working on feeding him into his stomach. They have told me they will allow me to take him HOME with him being fed into his intestines. Yes you read that right! They said the word HOME! Carter has to maintain his weight off of TPN and lipids and continue to tolerate his feelings before we can do this. There is also a chance Carter will need to have a permanent line placed for fluids, but we will not know for certain until he is completely off of the TPN and lipids. I am so excited they are even talking about sending us home!

Our surgeon told me today that he was positive Carter would not have survived without this last procedure and he was still worried afterwords when Carter did not tolerate his feeds after the surgery. It's amazing what God and the power of prayer can do. I am absolutely blessed to get to watch this first hand! God is so good and we owe him all the praise! I have felt so many raw emotions the past 6 months and I have to say this is the best one yet. I know Carter has a long way to go and we are far from having him well, but I feel like there is new hope. I can finally see the light at the end of what has been a very dark tunnel. Please pray that Carter continues to tolerate his feeds and the increases they are about to make. Pray he will maintain his weight after they stop his TPN and lipids and we are successful at setting up all of his home healthcare needs. Thank you all so much for your prayers. To Him be the Glory! We know that none of this... Absolutely none of this would be possible without the prayers of so many and the love of an Amazing and Faithful God.


Blowing everyone kisses!

Update 3/15/12

The past few days have been about the same.  Carter is still struggling and going back and forth.  They are still trying to feed Carter through his J tube and he is still struggling to tolerate it.  He seems to be feeling better during the day, but he is still extremely restless and irritable at night.  We have tried many drugs for bladder spasms and nothing seems to make a difference.  The main problem is that all of the drugs have to be IV form since Carter does not always tolerate things that are given orally.   He is still staying up until 2 or 3 am every night.  It's not that he doesn't want to go to sleep, but it's that he can't get comfortable enough to go to sleep.  The only time he does not cry is when I tightly hold him and rock him in the rocking chair. We have spent many hours in the rocking chair the past few nights.  He usually will take a 2 hour nap during the day and besides that he is awake and very happy.  I am completly confused on what is going on at night and I think our Doctor's are too.  I know it has to get better and I am praying it will soon.

Carter got to go outside in his wagon again yesterday.  He loved every minute of it.  He acts like a different child outside!  It was good for all three of us and lifted all of our spirits.  We know God is in control and Carter will get better.  We have not lost hope and can not wait to see what God has in store for our little gift.  Carter still has a long way to go and he still needs your prayers.  Please continue to pray for him.  Pray for healing, strength and for his intestines to wake up.  Brandon will be traveling back to Mississippi on Saturday and my Mom will be staying with us again for the next few weeks.  Please pray for safe travels and an easy transition for Carter.  Thank you so much for your faithful prayers for our entire family.

Caring for Carter

Today has been another day of ups and downs. Carter continues to have times when he feels really well and times when he does not feel well at all. Although the days have been like a carnival ride, today had more ups than downs because Carter's "Da Da" is back! It is always nice to have all of us together. We enjoy being together no matter where we have to be. Carter was also able to go outside today for the first time in nine weeks. We went for a short wagon ride around the circle in front of the hospital. He absolutely loved it. He was amazed at the sunshine and shadows. When the wind would blow, he would grab his hair just like the video of the hair dryer. It was good to see him smile. Your prayers are certainly still needed and appreciated as we wait for things to head in the right direction for our little man. We thank you so much and we want to point out again that WE KNOW GOD'S PLAN IS PERFECT! Blessed we are to be chosen to be the parents of this little boy whom God has used so much already.

Some of our very sweet friends and co-workers have generously decided to do a fundraiser for Carter.  We have been completely overwhelmed by their generosity.  

The fundraiser consist of a day devoted to Carter.  It is called Caring for Carter.  It will be held at Shiloh Park in Brandon, Mississippi on May 5th from 11am-6pm.  There will be pre-sold chicken plates, hamburgers for sale, a bake sale, a raffle, t-shirt sale and many more things.  They are asking for you to bring your own lawn chairs.  The shirts are already for sale, and you can find more information about Caring for Carter at www.caringforcarterbenefit.blogspot.com

Please check out the blog above for more details on the event or check out Facebook and the Caring for Carter page set up by our sweet friends. All details on T-shirts and the event itself can be found there. While we are looking forward to the Caring for Carter event, we want to express our feelings that your prayers are the most important thing any one can do for Carter and our family. No matter what need we may have we know that there is no greater need than for prayer. We thank each and every one of y'all. He will persevere... James 1:2-3

The Rollercoaster...

The past few weeks have been full of ups and downs. Carter's pain and
personality have been an absolute rollercoaster. One minute he is sitting up in
bed playing and the next he is screaming in pain. Since Carter's incision
dehisced (came open) he has started having bladder spasms. They are extremely
painful and just come and go. They tend to be worse at night, which has caused
MANY restless nights. The spasms have also led to Carter having to take Valium
for pain. Neither Morphine or Oxycocodone touch the pain. It breaks my heart for
him to have to take Valium. He hates the initial feeling and becomes very
irrational and slightly combative for the first five minutes or so. I am very
thankful there is a medication to help his pain, but I just do not like that
it's Valium.

I guess you can call Carter's last surgery a failure. He is still vomiting and
unable to tolerate feeds. They started feeding him two days ago and tried to
increase his feeds yesterday. Carter did the same thing he has done since
September. He started vomiting formula within two hours. Carter vomits all of
the time, even without being fed. They are almost positive his stomach is not
working, but they were just hoping his intestines would function and we could
worry about his stomach once he got off of IV nutrition. Our surgeon and GI
Doctors are not sure what to do at this time. They have decided that for now we
will continue to feed him at a very low rate and just wait to see if his
intestines "wake up".  We have not discussed any further plans at this time.

Dealing with all of this has become absoluletly exhausting! It's so hard to keep
allowing them to do the same tests over and over only to have the same results.
We know God has a much larger plan than we can imagine, but it's just not always
easy especially when it involves your child. We are ready for answers or just a
sign that he is getting better. It hurts so bad to watch him go through all of
this and I can not imagine all of the pain he is going through. Sorry for being
so negative. We have been dealing with this for 6 months now and Carter tends to
be getting worse. I think exhaustion has set in for all of us. On a more
positive note Brandon is coming back up this Sunday and we are very excited to
see him. Carter misses his Daddy and I miss my Husband! Please continue to pray
for Carter. Pray for strength, energy and for Carter's bowels and stomach to
WAKE UP! Thank you all so much for all of your outpouring of love for our
family! We could NOT get through any of this with out all of you!



Enjoying his new toy from the hospital!

Whew! Today has been another crazy day. Carter has continued to vomit since surgery. He had an x-ray on Friday that showed his GJ tube was not in the correct place. They attempted to place it in the right place for over an hour and they were unsuccessful. They decided to place a G tube on Friday and try again today. Saturday morning Carter woke up vomiting more than normal and felt bad all day. He did not sleep well Saturday night and continued to feel bad on Sunday. He had a low grade fever that eventually went up to 101.6. They treated the fever with IV Tylenol and Carter seemed to feel better, although it only lasted a short time.

Last night Carter was extremely fussy and irritable. He did not go to sleep until 4 am. They decided to try to place the GJ tube this morning and much to my suprise Carter was extremely good during the procedure, which was successful. He did not cry and he just gazed up at
the ceiling. Once we got back to our room I noticed Carter was still gazing up at the ceiling and just not acting right. I thought it may be due to the lack of sleep and decided I would change him and lay him down for a nap. I went to change him and much to my suprise part of Carter's incision was open and there was blood everywhere. Our Surgeon (and a million other people) rushed into Carter's room and after throughly looking at the incision they decided it was not necessary for surgery right now. Carter's muscle was still intact and they felt they would do more harm than good if they performed surgery at this time. Our surgeon is almost positive another place in Carter's incision will come open before he completly heals. They are concerned that when the other part of the incision tries to come open it will pull open the muscle and Carter's intestine may try to slide out. There is nothing they can do about it at this time. It is just a waiting game. They have decided that Carter's mental status change was due to blood loss and dehydration. They have given Carter extra fluid and his mental status has dramatically improved. Thank GOD!

They have placed all of the emergency supplies in our room just incase Carter's incison does come completly open. Please continue to pray for Carter. Pray that his incison will stay as intact as possible and for the part that is already open to remain infection free. Pray for healing and guidance for our surgeon. Thank you all so much for your continued prayers. To Him be the Glory!

The Past Few Days...

The past few days have been full of ups and downs for Carter.  The PCA pump has been such a blessing, it has really helped keep his pain under control.  Carter wanted to sit up for a few minutes for the first time today, although I think he may have pushed himself a little too much.  Not long after sitting up he started crying and went to sleep, he and has been asleep since.  Carter actually had a little stool this morning, although it came out when he was vomiting and he has not had any since.  The Doctor's are still hesitant to start feeding him.  He has continued to vomit multiple times per day. We are praying this is due to his bowels just not waking up yet and not a sign that the surgery did not work.  

We are praying this surgery works.  Listening to the Blair E. Batson raidoathon online has made us a little homesick.  It being March first today made me realize we have spent the entire month of February in the hospital.  I guess I should say Carter spent the entire month of February in the hospital.  I feel guilty that he has to grow up in the hospital.  I know it is in his best interest, but it still stinks.  Monday marks seven straight weeks of being in the hospital, although it is all worth it if Carter can come home well!  Please continue to pray for Carter.  Pray for Carter's bowels to heal and start to function.  Thank you all so much for your continued prayers!

I want to say a BIG thank you to Lambert's Healthcare for bringing awareness to O.E.I.S Complex on rare disease day.  To check out their blog post about Carter and their business click here...

Lambert's Healthcare