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

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. :)