First, just a little update on the last few weeks. We had some busy days with the ending of the semester at the college but did get to see most of my family as they came in for the preaching conference that accompanies the end of the semester. Just after that was over, my younger sister came to visit for about 4 days. We had a fun, laid-back time with Aunt Beth. She was able to see Philip a couple of times and read to him and Ethan. We played some games and visited friends. It was a fun time! Joyanna had a regular checkup with her doctor and we raised her formula amount since she is a little more active and is still growing. Philip had his longest seizure yet last Tuesday. It was in the middle of the night and lasted over an hour. He had what they thought were cluster seizures after that for almost another hour. They decided after giving him his rescue medications and not seeing relief to place an IV to administer medicine more effectively. The seizures then stopped. He did have a fever for a couple of days and they sent off panels and bloodwork to determine what it was. They really haven’t determined anything on that end but it may have been the catalyst for such a long seizure. Or it might be the other way around—such a big event may have wreaked havoc on his whole body for a couple of days. Anyway, that prompted us to add another calming medication at the suggestion of his doctors. He has responded well to this new medication and has been calmer again these last few days. No big seizures anyway and much more rest.
Many people here in OKC have experienced a stomach bug recently but thankfully, we have all escaped it. Ben moved to his new office but the process of transitioning jobs will take many more months. We enjoyed some time with friends on Memorial Day which brings us to this week. Today is an infusion day and everything is going smoothly. She’s snoozing currently.
Now, for the summer ahead. For this next week, Joyanna will be at home with us. But next Tuesday, we are moving her into the Children’s Center for a 60-day evaluation/respite period. I honestly didn’t realize I hadn’t put anything on the blog about this. It’s been on our radar for a year now because it has to be scheduled so far in advance. The purpose of this stay is not only to give caregivers a little break but also to evaluate EVERYTHING for Joyanna’s care—her equipment, orthotics, therapy goals, medications, progress or regress. I’m excited for her because I believe it’s coming at the perfect time. They are equipped to do concentrated, daily therapy and interaction with the kids and I believe this will serve as a litmus test for our goals moving forward. With this kind of focused treatment, we will get an idea of how aggressive we should or shouldn’t be going into the fall time with Joyanna. Plus, she would get so BORED at home in the summer and she can’t do a lot outside with the heat. She will LOVE being with the therapists, nurses, doctors and volunteers at the Children’s Center. They may even let her watch Finding Nemo non-stop!!! Her perfect world! LOL! The plan right now is to move Philip to a new room and Joyanna will be placed in an adjoining room, so they’ll be next door neighbors again. That may change slightly with placement logistics but something close to that. We’ll see for sure next Tuesday. Many friends have told me, “You won’t even know what to do with yourself” and I think they’re right but we won’t know all the details of that until next week. We haven’t gone more than 48 hours without changing a diaper or giving medicines, etc in 5 years. I don’t know what that life looks like anymore. I do know we have rolled activity after activity into this summer so it will be a busy one. We have heard of neat things to do and fun activities along the way, but they weren’t wheelchair friendly, or our older kids wouldn’t enjoy them or be able to do them, so a good bit of our free time is filled with special activities to do with Ethan. I know God has a purpose in placing Ethan in this family. God will use it in ways we have no idea and I am thrilled with that prospect. It’s good for him. But for this summer I am excited that he gets to do normal little boy things with Dad and Mom. He is going camping overnight with Daddy and we’ll go to a couple of children’s museums, to the lake, and the list goes on.
Then there’s our big trip! My husband has 3 weeks of vacation and is taking all 3 at one time this year. It is our 10th anniversary and he has planned a special trip. We will drive, taking our time, to Syracuse, NY where Ben’s mom lives. We will leave Ethan with her and spend a little over a week by ourselves in Maine to celebrate 10 years of marriage and the oasis God has given us in the midst of our journey. I really do feel like this is just that, a little oasis—time to come apart, relax and refocus. I am very much looking forward to it. I know my children here in OKC will have great care at TCC and uncles, aunts, and friends to check in on them. Ethan will have a WONDERFUL time with grandma. Ben and I need this time; we feel like it’s been given to us by God. He seems to be protecting it and providing for it. We’ll then come back to Syracuse and spend a few more days there. Then head back to OKC. Ben and I love the drive time together. We’ll see how Ethan does. We drove up to Tulsa a couple weekends ago and that was REALLY long to him. 😊 He doesn’t know what’s coming. The total trip to Syracuse is close to 24 hours, though we won’t do it all at once. He’ll have a new perspective after this summer.
So, here’s how you can pray for all of us this summer:
- Grace, strength and calm for Philip daily.
- Grace for Joyanna to transition to living without Daddy, Mommy, and Ethan at TCC.
- Wisdom for doctors, nurses, therapists in helping both Philip and Joyanna.
- Grace for us with Joy not being at home (free from worry, fear, sadness).
- Ethan to have a fun and memorable summer with Daddy and Mommy.
- Safety as we travel.
- Wonderful time with friends and family at each stopping place.
- Rest and refocus for Ben and me while we get away.
- Safety as we travel back at a quicker pace.
- God’s Will to continue to be the driving force for our family!
I was able to sing “His Way is Perfect” at church last Wednesday, May 23. Click below to hear the song. The Lord gave me the song and it is borne out of our journey. There were times when I tried to sit down and write parts of it but it just wouldn’t come. Then when the Lord was ready, the words poured forth. It is His song, sung through our lives.
his_way_is_perfect.mp3 |