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.