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.