Last Day

Today was our last day here in Cincinnati! We started the day with his colon x-ray, then we had an appointment with our colo-rectal center doctor. Those appointments went very well. We have found the right medicine regimen to clean Beckett's colon out on a daily basis for now. It may change as he grows, eats more food, etc., but they will be here to assist us all along the way. We are so thankful we came and feel like we accomplished a lot this week. Our baby is now having regular bowel movements (hopefully this will prevent c.diff from returning) and he is eating some pureed food. Yay! These are very big accomplishments for us! We have also been given the okay to let him sleep through the night! Whoo-Hoo! These are definitely milestones for us to celebrate. We continue to wait for results of some of the other testing we had done. Please continue to pray as the waiting can be one of the hardest parts!

After his appointment, it was MRI time. Beckett had to fast from 5:30 am until 3:00 pm when the procedure finally started. He finally got to have more formula at 5:00 pm! That is a long time for a little guy not to eat! He did very well with it. The MRI today went very smoothly. They took images of his brain and his lumbar spine. We do not have results of the scans yet. Oh, but I did forget to mention earlier this week that his colon biopsy was negative for Hirschsprung's Disease. We were not expecting for that test to come back positive, so it was not much of a surprise. According to the pathologists is colon is normal. For some unknown reason, it just doesn't want to move very quickly.

Beckett had a very nice nap in recovery. He was so comfy and cozy that he didn't want to get up! He just wanted to sleep! I think the week has worn out the little man...and rightfully so!

Here is a picture of him sleeping with the big fuzzy puppy dog that his kind nurse gave to him. It seemed to make his day!

We are so thankful for the progress we have made this week in his health care and are now very anxious to get home! We are ready for our family to be back together again and enjoy the rest of the holiday season. Thank you so much for your continued prayers for our little boy and our family this week. We are very grateful!

Love,

Kaylan

Miles from Normal

As we were driving through downtown Cincinnati yesterday morning, all I could think was that I could not believe we are here. Don't get me wrong, Cincinnati is a wonderful place to visit and we have enjoyed some fun touristy things while we have been here. But I never really saw myself here--miles from MY normal. This last year has pushed our family out of what we knew as normal in several ways, and there is just nothing normal about taking your one year old halfway across the country for medical treatment. Nope, not normal. Blessed to be here and surrounded by caring, helpful people, but still, it doesn't feel normal.

Today, we were able to see the very experienced director of Motility Disorders at Children's. He was very helpful in looking at Beckett--the whole child. He did not just focus on his poor GI motility but tried to put the whole puzzle together. He examined Beckett's developmental abilities and coordination. And in putting together this precious puzzle, he feels it is necessary for Beckett to have a brain and spinal MRI, along with more blood and urine testing. This means more anesthesia for our little guy. The MRI is scheduled for Friday at 1:30 pm, and yes, he must fast for 8 hours leading up to it...not easy even for a kiddo with gastroparesis.

Please be praying for sweet Beckett as he is put under anesthesia once again for this MRI. Please also pray for accuracy in testing. The goal for the urine test is the "first" urine of the day...how this is possible in a baby who wets throughout the night and day, I do not know...So I hope it is still as accurate as needed. Some of the specific diagnoses that they are considering for Beckett can have a lot of gray area and are difficult to diagnose. So we pray for definite and clear, accurate results. We are hopeful that it will all be negative. Please join us in lifting Beckett up in prayer throughout the testing process. It is hard on a little guy. Please continue to pray for all the doctors and professionals involved--that they are careful and thorough. Please pray for hubby and me as we continue to walk through the unknown and new territory of taking care of a child with chronic health concerns. Thank you.

But Jesus immediately said to them: "Take courage! It is I. Don't be afraid."

Lord, if it's you," Peter replied, "tell me to come to you on the water."

"Come," he said.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!"

Immediately Jesus reached out his hand and caught him. "You of little faith," he said, "why did you doubt?"
Matthew 14:27-31

We are thankful to our Lord and Savior who saves us, who reaches out his hand and catches us when we are distracted by the winds around us, full of fear and miles from normal.

Here are some pictures of the fun, touristy things we were able to do this weekend. We really have had a nice time between all the appointments and tests! It is a wonderful place to come visit!

The Nitty Gritty

So, I decided it was time for a more medical-type update of the nitty gritty of our trip to Cincinnati Children's. I will take a moment now to warn you that you may not want to read this while eating a snack and if you are really faint of heart, you may just want to skip this entry. I honestly have kept it pretty basic, but I know that it is still dealing with a icky topic--it's the colo-rectal center after all. For those of you who may not continue, just suffice it to say that we are accomplishing many of our goals in coming here. I think the surgeon described it really well when he opened his lecture Friday morning. He started with a picture on the screen of a boy who had had heart surgery. A certain hospital was advertising their cardio-vascular surgery department, and placed this picture in the New York Times. He explained that the hospital was very proud of their work--and very rightfully so, of course! But that they (the surgeons at Cincy's Colo-rectal Center) are very proud of their work, too, but the New York Times would never accept an picture of their work as an advertisement. It is just a subject that people prefer not to think about or talk about--and definitely not look at advertisements for, but that it is a very important part of life.

Thursday morning Beckett had another Full Thickness biopsy of his colon done. He had this surgical procedure done back in March as well. The surgeon takes a small piece of his colon and stitches it back up. This biopsy was to re-test for Hirschsprung's Disease (an absence of the nerves that push food through the colon) and test for Cystic Fibrosis Metabolic Syndrome. His last FT biopsy was not-conclusive of Hirschsprung's Disease, however, it did show a marked immaturity of the nerve cells needed for pushing food through the colon. So basically, according to that biopsy, he had the nerves needed, but they just are not as mature and productive as we need them to be. We should hear the results for the Hirschsprung's test in the next day or so, but the results for Cystic Fibrosis Metabolic Syndrome will not be back until later. Beckett was quite a little trooper (as always) for the surgical procedure, and we were headed back to the hotel early in the afternoon. He had a nice dose of IV pain meds, so he took a wonderful, much-needed nap with Daddy that day.

Friday morning began with a lecture by one of the lead doctors of the Colo-Rectal Center. It was very informative and helpful, and we learned more than many people will ever have to learn about--well, poop. Constipation can range from mild where the right diet and the occasional dose of Miralax are all that is needed to severe where bowel movements do not occur without intervention. During the lecture, a child-life specialist took care of the children, and I think Beckett really enjoyed watching the other (older) children play. For more information on the Colo-Rectal Center and Bowel Management Program, click here. We were then sent to another campus of Children's to have a contrast enema done. This gives the surgeons a good look at his colon and exactly what is going on in there. Our doctor said that his contrast enema did not look like a "Hirschsprung's colon," but only the biopsy will really tell us for sure. Then we headed back to the main campus hospital and waited for our next appointment with the doctor. At this time, we discuss the plan for keeping Beckett's colon "clean." He prescribed an amount of laxatives to start with. Then, each day, Beckett gets an x-ray done of his colon to tell if it is getting cleaned out or not. The laxatives are then adjusted accordingly. The goal is that at the end of the week, he will be on the perfect dose of laxatives--not too strong and not too weak--to keep his colon clean and avoid blockages and more infections, etc. The doctor expressed to us that there is no known side effect to laxatives. It is the only medicine he knows of that does not have a scary side effect. Many people will argue that the laxatives could cause the child to become "laxative dependent" but, and he stresses, "these children are already laxative dependent." In addition to the laxatives, we have also been doing something more aggressive then enemas called irrigations. It is as bad as it sounds, but I will not get into it any further here. This is done typically in Hirschsprung's patients or patients with bowel "stasis" to get the colon as clean as possible to prevent or fight infection called enterocolitis, and more specifically, c.diff. Because of Beckett's recurrent c.diff, they thought this was an important step for him. It does seem to relieve him when it is all said and done, but it is really quite miserable for all of us.

At the end of our appointment on Friday, we had been at the hospital for lectures, radiology, and appointments for 10 hours. It was a long day! Waiting on that many appointments to line up is not always easy with a one-year-old, but Beckett did pretty well. He was definitely relieved when we got back to the hotel, and he was able to have a little freedom to crawl. When we put him down on the floor, he stretched his arms out and front of him and his legs behind him, and spread flat out on his tummy on the wonderfully clean hotel floor (ick...) It was pretty cute to see that he could sense the relief of the end of the day.

Over the weekend, we began to feed Beckett some pureed foods. He started with just a few bites of pears, but has increased his intake each day. Of course, as his pureed food intake increases, his formula intake decreases. He is just not able to fit as much food in his little tummy as we would like. We are hopeful that his system can really get moving and he will be able to eat some while also still taking his formula.

Today's x-ray showed that his colon was fairly cleaned out. Yay! We are on the right track! The laxatives and irrigations seem to have done the trick! We will return in the morning for another x-ray followed by a progress report with our nurse. We came here in order to get the kid to have bowel movements, and I am certain we with the right medicines, we will be successful. At noon, we have an appointment with the motility specialist here. The Colo-Rectal center works on, well, the colon end of things. This motility specialist will work with the upper all the way through. Because his stomach also moves slowly, we felt it was important to see the motility doctor as well. Beckett is not just a colo-rectal kiddo...he needs support for his whole little system.

All in all, I think we are very happy with our trip here. God is working in huge ways. And I know that regardless of any new diagnosis, we will have a new plan to keep our little man's colon healthy, and that will be a good thing! That is our goal--to manage his bowels and help him to be healthy! And we will know that the best of the best have looked at our sweet boy. We may not be able to "cure" this issue--the surgeons here are the first to say that--but we can manage it.

Thank you all for the prayers throughout our trip and the entire process leading up to us getting here. We are so thankful to have friends--those we have known for years and those we have never met--to lift our little boy up in prayer. Thank you. Please continue to pray for all of the pathologists, surgeons, and GI doctors working to figure out the best plan for this little guy. Please pray for healing for Beckett, rest for his parents, and courage for his big brother.

I promise the next post will be a lot more fun with pictures of some of the cool (literally) things we have found to do here.

Days One and Two at Cincinnati

Whew what a day! Kaylan asked me (her hubby) if I could post an update for her. I am not nearly as good at this kind of thing as Kaylan is, so please bare with me. All three of us are exhausted from our adventure at the hospital. None of us slept much last night. Beckett and I took a good afternoon nap after the hospital visit. As usual his anxious mother did not rest that much. Hopefully we can all "catch up" tonight!
Everything went wonderfully with Beckett today. He is such a trooper. We have been amazed at how friendly and personable everyone has been to us. When I say everyone, I mean everyone! All the way from the time we stepped foot inside the Houston airport until the lady that escorted us back to our car after Beckett's procedure. I really feel like the good Lord has been leading us through our entire Journey and allowing us to meet some amazing people! Even the maintenance man that fixed the heater in our hotel room asked if he could pray with us for little Beckett, and if he could add him to his prayer chain at his church....and he did! He prayed right there in our hotel room with us! God taught me an awesome lesson...he showed me what it looks like to be bold and share your faith in Him no matter what the situation or who your company is. We as Christians need to always treat our brothers and sisters like brothers and sisters and not be afraid to ask if we can pray with them, and truly mean it! I have often told people that I would pray for them, but I have never asked if I could pray WITH them...especially complete strangers! I hope one day I can demonstrate that level of boldness. The maintenance man is just one of several who have told us they would pray for us that we have met while on our journey. I really appreciate knowing that my family is surrounded by other Christian families while we are away from home, going through what we are going through, and knowing that they are praying for us. Oh, and I am also thankful the maintenance man was able to fix our hotel room heater...ha! Texas folks and 20 degree weather don't mix that well.

Beckett Preparing for his procedure.

Beckett Showing off his awesome dress!


Beckett and Mommy



Beckett and Daddy after their 2 hour nap!


Showing off his Christmas jammies

Ready for Cincy!

Ready for some colder weather!!

The time has come, and we are preparing to leave for Cincinnati tomorrow. Packing winter clothes for ten days can be very challenging! We are so thankful for this opportunity to get a second opinion at the #1 GI children's hospital in the country. Everything has fallen into place with such ease, and we are grateful. Thank you for your prayers throughout the process of getting there. We really do appreciate them all, and we know God is moving.

Thursday morning at 8:30 he will have an exploratory exam under anesthesia and a full tissue biopsy of his colon. Then, Friday we will meet with the GI doctor for the first time, and discuss Beckett and a starting plan. We will then stay in Cincinnati for a full week to implement the plan for eating (hopefully!) and stooling. Lovely, I know...but it's true. We will also have the Cystic Fibrosis specialist there to weigh in on Beckett. However, we should not hear results from that particular testing for weeks. We are hoping for some further help and answers for Beckett's health concerns. We just have to turn over this stone to make sure we are doing everything we can for him.

Please be praying for the safety and "ease" of our trip with a little one. Pray for the doctors to be wise and careful. Please pray that we will have strength and endurance as we do not anticipate much sleep these next couple nights due to the procedure. Please pray for answers and for healing for our little man. We are hoping to leave with a good plan. Thank you so much! I will keep you updated!

Now these pictures I just had to post because they are precious! Please pray for Brant while we are away. He is a little apprehensive about our trip, and we will miss him so much! He will be holding down the fort with all of his grandparents!

Putting the star on the tree!
Brant's "little collection" all in a cluster on the tree
An amazing and strong little boy!

December 8

Beckett's surgical biopsy is tentatively set for December 8 in Cincinnati. We are looking forward to getting their opinion (and hopefully some answers) regarding Beckett's digestive problems. They are working to schedule the other testing around this date, and the week of bowel management will follow the surgery. We are excited at the possibility of answers and solutions, but I think with that excitement comes some nerves. It is easy to get side-tracked by the negative questions running through my head...What if they cannot figure it out? What if there is nothing they can do about it either? What if we just have to continue on this schedule of bottle feeding formula indefinitely? But, then I stop myself...or at least attempt to. I know that worrying about what will happen does not help anything. There is no productivity in worry. In fact, worry just eats away at you and makes everything harder, so I am working to choose not to worry. Not always easy...but worry is sin. It is a sin that so easily creeps in and takes a hold of our hearts. It has always been a struggle for me. I can so easily be caught in the grip of worry. It is one of Satan's attempts to "devour" me. But I refuse to give Satan that power and live in constant worry. I want to place all my trust in God and remind myself constantly that He is in control. He is bigger than all of this. He is bigger than tests and doctors and answers. He is our Creator and the one who holds us all. So I daily..hourly...work to push worry out and give it all to God. I am so thankful for a God who cares for us and loves us. We are very hopeful that this trip will bring us new options for Beckett. This hospital is number one in the country for pediatric gastroenterology after all! We are praying for solutions. I know that regardless of the outcome of our trip to Cincinnati, our God, the same God who created the sun, moon, and stars, is taking care of my sweet Beckett and our family. And He always will.

1 Peter 5:7-11
Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power forever and ever. Amen.

Waiting Once Again

Here we are. Waiting once again.

I spoke with Beckett's new nurse at Cincinnati Children's Hospital Medical Center today, and we discussed his case history. She gave me an idea of how the process worked as an out-of-state patient and some scenarios of what we can expect to happen. It definitely gave us a better picture of how this could all play out. She has now passed Beckett's chart on to the doctor they feel best fits our needs, and we can expect to hear back from them next week with a plan of what needs to happen next. More than likely, we will be headed to Cincinnati sometime this fall. It is rare that they review a case and decide that everything is being done exactly how they would do it.

We had a busy GI day today as we also had an appointment with our doctor at TCH. Once again, they were not too pleased with Beckett's rate of growth. He is gaining, which is a praise, but we do need him to gain more! So please keep praying that he will grow! They bumped his formula up to a toddler Elecare formula, now concentrated to 30 calories per ounce (as opposed to the typical 20 calories per ounce in infant formula.) That means we will be flying through these little cans of formula even quicker! And he gets to try vanilla flavored formula which should add some excitement to his day and a nice change of pace to his taste buds!

I am thankful that his GI team at TCH is very understanding about our second opinion with Cincinnati, and they are willing to help in any way by doing any necessary blood tests, stool tests, etc. The NP actually looked a bit impressed that we were working with CCHMC...like she knew I had been doing my research. They are also looking forward to our appointment with the Geneticist here at TCH, as that will help look for rare metabolic disorders that could be causing his failure to thrive.

It is a definite possibility that his lack of weight gain is in direct correlation to his motility disorder, but they agree that it is good to investigate or rule out other possibilities.

So this week, we wait. And honestly, I am quite nervous about it. In a week, we could have new information or be on a path that will change my little boy's health and quality of life. This has been quite a process already, months quietly in the working, months of searching for just the right place to take him, months of waiting for him to "prove" his need for more intervention. And now here we are, a week out from the possibility of more help and more answers.

Over this next week, my prayer is that I can wait with purpose. I can use my time to praise God and love God with all of my heart. I can use my time to teach my boys about God's love and God's truth. I can spend my time in prayer for my family, our dry and "thirsty" state, and those around me. I do not want to spend my time in a ball of anxiety- nervous, exhausted and on edge. I do not want to live in worry while I wait. This is all much easier for me to say then to actually do.

Please pray for the doctor who is doing the final review of Beckett's charts and tests. Pray for patience and wisdom. Pray that they might find the underlying root to his difficulties if there are any and that they would have some solutions to help him grow and thrive. Pray that nothing would be overlooked. Please pray also that all travel arrangements would line up easily in the even that we need to travel. Please pray for our hearts while we wait.

Thank you so much for your prayers.

Next Steps

Our sweet little guy is nearing his first birthday. In some ways, time has absolutely flown by, but at the same time, I can't remember my life before him. He has been an amazing addition to our family, and we are so thankful that he is doing as well as he is. It absolutely melts my heart to watch his big brother love him in huge ways. His smile and laugh really do have the ability to light up a room. He is precious, and I feel so blessed to get to be his and Brant's mother.

As his birthday draws near, we still have some unanswered questions regarding his health. Many of the "what-ifs" over the last year revolved around how he was doing at magic number one. The doctors have wanted to give him time to catch-up and gain some ground before looking at more possibilities. There is a protocol to follow, and I do understand and appreciate their approach. I think they believe in giving kids who have a sort of rocky start to growth and digestion a chance to recover and thrive before subjecting them to more testing. Many children do tend to "take off" after the appropriate medical intervention and of course, that is still our hope for Beckett. When he was first hospitalized with the diagnosis of failure to thrive, we all thought that once on the proper special formula and reflux meds, he would grow and chunk up. To be quite honest, I think he has surprised the doctors as he continues to be a "little puzzle." His formula intake is good, and he exceeds their minimum calorie count every day. We are still looking for an explanation as to why our son doesn't grow at the typical rate and why his digestive system basically doesn't work. We have learned that sometimes there is no "why," but we want to give it a search first.

So, after months of research and prayer, we have decided to contact a team of doctors at the Colo-rectal Center for Children at Cincinnati Children's Hospital Medical Center. This is the number one rated children's gastrointestinal department of all the children's hospitals in the nations. I guess we figured if we are going to get a second opinion, why not go to the top rated place? This is the only colo-rectal center for children in the nation, and they have helped countless children with severe idiopathic constipation, Hirschsprung's Disease, and other GI disorders. I have heard many positive stories from other mothers. So I emailed one of the lead doctors, and they are interested in helping us with Beckett. We have sent all of his medical records and radiological images to Cincinnati, and we are waiting for the team to review his case, and decide if they have any ideas of how to help Beckett. They will then decide if we need to pack up and head to Cincinnati so they can treat and care for our little guy. Of course, the doctors there could also decide that there is nothing they would do differently with their treatment then what is already being done. From my research, I do know that if there is no other diagnosis (such as Hirschsprung's disease), they treat with the same medications as our doctors here. It could be up to 6 weeks before we hear their review of his case. We are just looking forward to having another set of eyes review Beckett's history to ensure that we are doing everything possible for him.

We are thankful for our doctors here and the great job they have done "maintaining" Beckett. We are blessed that he has been watched very carefully and has avoided infections such as enterocolitis (a serious infection of the small intestine and colon which is often a complication of Hirschsprung's Disease or severe, chronic constipation.) They have been steady and helpful throughout the course of the year, constantly reminding me that it is a marathon, not a sprint. We have to troubleshoot and try new and different things slowly in order to get a better idea of what is going on. It can just be so hard as a parent to have patience when it comes to your child's health care. While we think TCH has done a good job of keeping Beckett GI system moving (he now vomits very rarely and has a bowel movement every 1 to 2 days), we are looking to Cincinnati for the possiblility of a larger umbrella diagnosis that might cause his list of problems or for an unlikely oversight of Hirschsprung's. We also would just like to hear from another set of doctors about how they would treat our son's motility disorder in order to possibly have some options.

In addition to the doctors in Cincinnati reviewing Beckett's case, our doctors here are beginning to look into more possible explanations for his slow growth such as rare metabolic disorders. After he turns one, and we see where he is growth-wise, his GI team will consider what needs to happen next, if anything. For now, our pediatrician has decided to refer us to a geneticist to get the ball rolling with that set of testing. Our appointment with the geneticist is not until the end of November, but he is on a waiting list should something become available sooner. We are hoping for sooner.

We spent some time deciding if we wanted to share all of this information here, but ultimately what we need right now is prayer. We are juggling a lot in this next phase of Beckett's health care...trying to learn why? Please be praying that as the doctor's in Cincinnati review Beckett's medical history, they would be careful and wise. I pray that God would make any important and pertinent part of Beckett's records jump out to the doctors. I pray for patience while we wait for these next steps to take place. I pray that we will feel confident in the answers we get, while at the same time, having the wisdom to know when to keep looking. I pray for peace. Please pray that Beckett would just miraculously start gaining weight and digesting his formula on his own (without drugs). We believe in prayer, and we are so thankful for all of your prayers for our family. Thanks for checking on us and praying for sweet Beckett and the doctors as this next phase of diagnostics begins. Thank you.

P.S. I apologize for the wordiness of this post...I am one tired momma, and sometimes I can't get all my thoughts together. Thanks for understanding. :)