A quick update on where we are with the next step.
Carson got his braces off the beginning of February (& likewise is done with head gear at night time as part of his orthodontic process)...Yay!! Buuuttttt...can't say that he liked the retainer much better...in fact, it was another time that Carson had to step up and do something he wasn't really excited about.
Braces (in a way) were nice because once they are on...you don't have the option of taking them off/out. However, a retainer is removable (& the first days are always a little harder because you have to adjust and we've seen with Carson that you also produce a lot of extra saliva because its something new in your mouth.) We got home from the appointment and Carson REALLY didn't want to put the retainer back in after eating. It just wasn't comfortable, makes talking harder, and is just a pain! Although Carson didn't say this...it felt to me like he was just disappointed and exhausted. He get excited about one thing (getting his braces off)...but he was just thrown ANOTHER obstacle (a retainer that needs to be worn all the time). It's always something it seems. After tears (for both of us), sitting down with him on his bed, giving him some time and trying to explain that there are so many things in life that just aren't fair and so many things we have to do that definitely aren't fun but are for a purpose, Carson put the retainer back in and he came outside to get back at life and playing basketball. He had a smile on his face and enjoyed the rest of the afternoon. If only, I could move past my disappointments as seemingly fast as he did! Proud is an understatement! And although it makes me sad that he has had to learn that lesson so early in his life...I have no doubt it will serve him well in the years to come!
My next step was to call and get his next scopes in Cincinnati scheduled. When I called (in February)...they were already scheduling out to the end of May. So Carson's scopes will be May 25th, the day after he gets out of school for summer. I also followed up with a call to pulmonology regarding getting a CPAP machine at home since we will have such a long wait before the scopes.
I was initially told no by the pulmonology nurse, 'we can't give you a CPAP machine for home because he is not currently on it.' She told me she would check into options but I didn't receive a call back for weeks so I just took that as a closed door for now. However, about a week ago, I got a call from the pulmonologist herself and she said after going through the chart and notes herself, she fully agreed that it would be a great idea to get a CPAP at home, use the settings that were attained from the most recent sleep study and go from there (which was exactly what I was hoping for). Not only that but she has seen many kids in Carson's situation and gave me more of an idea of what to expect and what works best typically. I got off that phone call with a smile on my face...and very HOPEFUL! Hope is such a powerful emotion!
Dr. Torres-Silva thought I would have gotten a call from the home medical equipment this past week for Carson to be fitted and the machine to be delivered. Although that didn't happen, I do hope that we get it soon. Prayers there are no hold ups with insurance or the supply chain! And also, I am praying that we are able to find a mask that fits properly (meaning it doesn't have to be so tight) and as always, for Carson's comfort in this adjustment phase...another obstacle that he'll get to cross.
And the last little nugget...I had it on my list to call and get a follow up appointment with Dr. Lin (the plastic surgeon in St. Louis). He has followed Carson sporadically since the NICU days for scar management from the teratoma. So far, we have not needed anything but I think the scar is starting to restrict Carson's neck range of motion some so I was calling for a follow up. Turns out Dr. Lin is closing his clinic and will no longer be seeing patients. We will be referred to a new doctor there but in the midst of researching the new doctor on the Cardinal Glennon website, I stumbled across Dr. Lin's video. Dr. Lin happened to mention how Cardinal Glennon just has a different 'feel'...and although he didn't know why EXACTLY...he thought it might have something to do with Cardinal Glennon's mission...
"Through our exceptional health care services, we reveal the healing presence of God."
I, again, was reminded of how God determines our steps and cares for us. It filled me with gratitude that Cardinal Glennon is where our journey started and while I believe many doctors work in this capacity...it's a breath of fresh air when a whole hospital system is working under this mission. Jesus came to heal and I will continue to pray for Carson's complete healing! Help me keep my eyes open to all the ways God is moving.
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