We had a wonderful Christmas break, spending time with family in Kentucky, mostly unplugged from all our technology. It was very relaxing and we needed it. Philip did very well maintaining on the medicines he was placed on in the hospital. He slept a lot but we figured that was a good opportunity for him to catch up on rest. Joyanna made 2 medicine changes as well. The first definitely helped and the second helped in some aspects. They didn’t cause problems enough to take her off so this will probably be her new normal. Now that she is at home, we’ll probably see how they have affected her more. She had a good time with Poppa, Granny, aunts, uncles and cousins. One of the funniest things was her imitation of a rubber chicken that “squawked” when you squeezed it. She did a pretty good impression and everybody got a kick out of that. She got a baby doll from Poppa and Granny that says, “I love you” and makes kissing noises. She loves that doll. She has a renewed interest in saying, “I love you” since the doll is prompting her. Ethan had a blast and ate more candy and sweets than the last two months combined! He was loving it. (He’s my sweet tooth!) He wrestled with cousins and uncles and had everybody laughing at his silliness at times. We did lots of singing which is what we love to do, most of the family joining in, with all 4 parts loud and strong. We also had the chance for 11 of us to go try an escape room, a game of sorts where you solve clues to get out. It was so fun! We divided into two teams and competed against each other. The 2 teams finished within 2 minutes of each other. But it was probably so fun to me because my team won! The guys spent some time clay shooting and hunting and we also got to see some extended family who traveled down to see us. It was a wonderful time!
Now that we are home and getting settled back in, we are making changes to Philip’s medicines and trying to decide when to send him back to school. Ben is already back to work today and school has started but we are not ready to put Philip back in for several reasons. We have had a medicine in mind since Philip was in the hospital but it was harder to get before we left for the holiday so we are planning to start it this week. It is indicated more specifically for the involuntary movements whereas most of the others are indicated to address something else but happen to help the movements as well. A couple of the medicines he was taking to maintain are sedatives, thus the reason he was sleeping a lot during the break. That’s not necessarily bad but we’d like to move to a medicine with better control over movements specifically. The dosing schedule he has been maintaining is a little challenging so we are addressing that as well. Really all of that has to be worked out before he goes back to school. With starting a new medicine, I want to be able to observe him all day to see what changes are taking place and how effective the medicine will be. Those are important aspects of his care.
Joyanna has a physical therapy evaluation set for this Thursday and then we should start regular visits for her. Please pray she can maintain as much as possible of her physical ability especially since we are praying the enzyme replacement becomes available as soon as possible.
The insurance changes are still a consideration and we are switching to one medical supply company, merging from the 3 different ones we have right now. We will also tour the Children’s Center in Bethany, OK to understand more of the setup and what they have to offer for families and children with progressive genetic diseases. Philip and Joyanna’s PCP is a doctor at the Children’s Center Clinic. We’re familiar with that but will be touring the actual hospital and therapy setups. There’s a lot to think about right now but one at a time!
We hope you had a wonderful holiday season and thank you so much for the prayers, cards, gifts and thoughts that you’ve all shared with our family. May the Lord bless you for your continued love and prayers.
Happy New Year!