Home, Sleep study booked and future jaw plans

 

It's been one week since we came home. This past week was the busiest of the entire year for the boys and gave us no down time alone to hold space for all we went through last week in Cincy. Tim and I took time together today to finally process everything and discuss future plans and possibilities. We have learned it's important to do this. Proud of us for doing it because feelings/emotions bubble up and that isn't always comfortable and fun. It's important to feel it all and put one step in front of the other. 

Cincinnati solidified the following for us:

-Preston will always have his floppy airway (Tracheomalacia) but it's stable and no need for a recontruction (again, thank God) but can be a big reason for his extreme loud and narly coughs when he is sick and why it takes him longer than the average person to recover from illness. 

-His voice is hard to hear for a reason. Feels good to no longer question ourselves about the strain he endures to project his voice. We have a modification in place for when he needs to public speak or talk to a very large group of people (example: scout events or school productions) which will be a microphone. It will keep him from straining and be heard.

-He has trouble chewing for a reason. He can barely chew and especially eat meat unless it's so tender it melts in his mouth (no wonder why he loves french dip sandwiches). His jaw is uneven. The right side is shorter than the left. And his teeth don't touch well. Even after 7 years of orthodonticts (spacer, braces, oral surgery) he still has a long way to go and jaw surgery is the next step.

-He needs relief for his jaw sooner than later. We are praying sleep study results will reveal a timeline for us. We always planned on jaw surgery once he is fully grown but it's looking like much sooner now. 

-Sleep study is booked for August 18th at 7pm. Just Tim and Preston are going for this visit. Plans are still in the works for how they get there. 

-Vocal therapy is on hold till we hear sleep study results for a myriad of reasons.

The visit was exactly what needed to happen and there is no greater feeling than peace, validation and answers when going through all of that. 

Preston is doing great. He knows jaw surgery is down the road probably sooner than later. He is too old to not know what was discussed after his scope. He is fine with going to Cincy for a sleep study and glad Tim is going with him. We have shared with him we are finding the BEST doctor for his jaw extraction because that is what he deserves and it will most likely be out of town and we will all go and support him because that is the only way our family will handle future surgeries and he felt very comforted by that. I am grateful he is so resilient. Reid is doing great. He is SO glad he went with us and he has a much better understanding of why Preston can sound so awful when he is sick, take longer to recover after illness, sound the way he does, and struggle with chewing food or being able to open wide enough for a piece of bread let alone a sandwhich. I could spend a whole blog on this but I won't....I will just say it has been a struggle in this area in our home and it's not been fun. Until you go and hear some of these things shared by professionals, it doesn't resonate the same as when mom and dad try to explain it. It was a fruitful visit in so many ways and his heart is heavy for P. He told me how he wished Preston didn't have to go through this but he would always be there for him. Paycheck of the heart in that moment for me! 

I came home last weekend with my wheels turning. I never sit on news for very long without taking action. I just don't. I researched this past week and already have 2 doctors picked out we plan to visit for 2nd and 3rd opinions regarding jaw extraction surgery. One is in Omaha, NE and the other is in Iowa City, IA. More to come on why those two doctors/locations are who we will be seeing. More testimony of God's provision through our journey and next steps. Gives me chills. 

Want to wrap this blog post up by sharing one thing I have felt along this medical journey and that is a special kind of solidarity and circle of support from mom's who have worn similar shoes we wear. Once I was connected with those medical moms/families early on, it filled us with encouragement and hope and continues to do so. It also unexpectedly pointed us to different doctors based on our needs and their experiences. Something I never knew we would need. Well, we are at that point again for a new journey on a road we have not traveled down yet. Jaw extraction surgery is new for us but not new for a friend of mine who I immediately heard from once I posted about our next steps. SO grateful for her. Her text at one point saying "I am always here for you" brought me to tears. Nobody wants to travel down an unknown road alone. God is generous and has truly taken care of us with the special people he has placed in our path for the past 12 years and guided us where we should go. He is still taking care of us. It's been a gift I continue to have deep gratitude for. I know not everyone has that. I also hope I can be that friend in the same capacity for those who need it. For now, we wait till the sleep study and take our next step forward once we find out those results. We plan to enjoy EVERY SINGLE MINUTE of our summer with the boys. It is not lost on me we could have been in Cincy living at the RMH for an airway surgery. We plan to make this summer extra special knowing we get to be HOME in KC and we also get to take our much anticipated family vacation I wasn't sure we would get to take. 

Yellowstone and Grand Tetons here we come! 

I plan to update when I know more. Thanks for walking this journey beside us, friends!!!! 

Reid sporting his FC Cincy jersey and P sporting his Bearcats shirt
on Monday when they returned to school. 

Roxy was excited to be home and of course we went on a long walk.

Back to baseball. 8pm games are not for the faint of heart
but felt great to be back with our baseball family.

District wide Band Concert was fantastic with good buddies.

Reids 2nd baseball game for the week was rained out so he had the chance to be in the Jazz band performance at the CAA. He had a solo and loved being able to be there.

Wrapped up our School Carnival Era on Friday night. That concluded Tim's time volunteering annually as 'security' with other dad friends and my time doing Cake Walk with my mom friends. Such great memories and the boys had fun.  

Tim and I took P on a bike ride and dog walk to enjoy the cooler temps after the storm and enjoy how beautifully green everything is right now. He loves nature and riding throught puddles and it was nice to have alone time with him. 

Wrapped up the week at Reids baseball tourment this weekend. These boys played fantastic and we dodged the rain on Saturday to play and win both games. 

                                          

    So glad we were back and didn't miss any of these activities this week!!!!! They were so important!