We did increase a dosage of one medicine, Onfi. Last time, we increased that med, he seemed to feel so much better. It had very little negative side effects and he seemed to be able to respond better and think more clearly. We have seen that again this time. We will probably increase it one more time within the next month and that will be his maximum dosage. We might try then to decrease his other medicine which in the past has had the opposite effect. It makes his thinking cloudier, it seems.
We are switching primary care doctors for Philip. There is a center in Bethany, OK called the Children’s Center. (Bethany is within the OKC metro.) The center provides care for long term medical needs—therapy, clinics, even live-in care for some patients who can no longer stay in a hospital but need complete medical monitoring. This doctor is a pediatrician at the Children’s Center and experienced in caring for children with multiple advanced medical needs. He was recommended by our geneticist and will be able to help us navigate the ever-changing care for Philip, like feeding tubes. We should see him in about a month.
Since we’ve posted, we went on vacation. My dad was preaching at a camp in Eufaula, OK, the week of July 4th. We were thinking back in the spring that we wanted to see if we could spend some time with them while they were in Oklahoma, especially knowing Philip’s rate of decline. We just weren’t sure if we could stay in a hotel all week with the special needs Philip has. The Lord opened the door though and friends of ours made their trailer by Lake Eufaula available to us. It was just on the other side of the lake from the camp and about a 12 minute drive. The place to stay was so perfect for our needs. We decided a couple of times to allow Philip (and Ethan) to go to bed early, something we couldn’t have done in a hotel room. The kids were also able to take naps each day. We went to several services at the camp and enjoyed some other fellowship times and meals. On Monday and Tuesday, my whole family was there. Beth took off work to come and Joe and his family decided to drive down from Missouri. Southwest Baptist’s juniors attended the camp so Jason and Angie came the first couple of days. It was a quick but good time to be together. We had the family picture with my Dad and Mom and all the children and grandchildren taken on Tuesday. The last time we had that taken Philip was 6 months old.
Last night was our annual tradition of ice cream for supper. Since 2008 when Ben and I were married, we’ve decided to pick one night in the summertime and just have ice cream for supper. We have always tried to go out and find a new ice cream parlor or even combine visits to a couple of different places. Joyanna was super excited all day yesterday, frequently saying, “Ice creams! Ice creams!” We found a new place, Roxy’s Ice Cream Social, and tried the local Russell Stover store for their ice cream offerings. Both were very good! We decided to stop at McDonalds and let Joyanna and Ethan play and get fries for everybody, especially for Philip. So, we didn’t have just ice cream for supper but we did have a lot of fun! It’s a fun family tradition.
Please pray that the transition in PCP will go quickly. Pray that the feeding tube will come at the right time and we won’t have major issues with aspiration or weight loss before we get it in. Pray that Philip will have as many good days as possible. Pray that God will give wisdom about sending him to school this year. I know many of you pray for us daily. Thank you! God has still been very good. His presence is real in the darkest moments.
One of the things God spoke to me about this week is His purposes. We don’t know what God’s purpose is for Philip’s life but we believe He has one. In fact, we all have a purpose for our life, designed by God. For people like Philip, they are destined to fulfill God’s purpose in their life. They really have no choice in the matter. We, on the other hand, can frustrate God’s purpose. We can choose to reject His purpose for our life. There are so many people in this world, even Christians, who never arrive at the purpose God has for them because they are intent on doing what they want to do. If only we could all just wait patiently each day to live out what God has for us.