I can’t believe it’s mid-summer. I’ve found it’s been hard to find time to update on the blog because my routine is so changed. Ben’s work hours have changed slightly for the summer, we’re fitting in visits to TCC daily, and doing more things out and about. We also had Vacation Bible School at church and this year, I was able to teach and be involved every day. When I’ve been at home, I must focus all my attention on keeping up with laundry, dishes, cleaning the house, plus the garden. I have slept well most nights. 😊 But today is an infusion day and not so complicated as the last one so I have time to write.
Joyanna is well-settled at TCC. The first week I wasn’t sure what she thought about it. She didn’t seem herself. Then I realized after her last infusion, that what I was seeing was less alertness as we were getting closer to another infusion day. It’s actually been interesting to see my perspective since I am not with her all day, every day. I see her for an hour or two every day but that has allowed me to see a bigger picture. Right after the infusion on June 13, she was alert, vocalizing, lifting her head up with strength I haven’t noticed before. In the days following, we got her to laugh and smile. The therapists have evaluated her equipment and adjusted it. She is on a schedule for being in her stander, wearing her braces, sitting up in her wheelchair, therapies, and group activities. I came to visit her last week when she was at group activity so Ethan and I peeked in. Volunteers and employees of TCC were sitting with several of the children and helping them to play the bells. The volunteer with Joyanna just held her hand over Joy’s and played the bell at the right time. It was so cute. They each had a note and would play on their turn to play simple melodies like Twinkle, Twinkle Little Star. I think Ethan was jealous of Joy!! You could see he thought it looked like fun. She doesn’t seem upset and is sleeping through the night which I think is a good sign that all is well in her little world. Nemo is on quite a bit when I come to see her. 😊
Philip has continued his trend of one large seizure every few days. But over the weekend and into this week he had several good days in a row. He seemed calm and was SATing very well. (His oxygen saturation levels were good.) Then, early yesterday morning he had some vomiting and possibly aspirated a little of the secretions. He started running a fever and sure enough, the chest x-ray of his right lung seemed a little hazy so the doctor started him on antibiotics to fend off a bout of pneumonia. Yesterday, he just didn’t seem to feel well at all, battling with fever and therefore, a higher heart rate and extra tremors and seizures. Thankfully, last night after they started the antibiotics and he got his regular medication, he calmed down and slept through the night mostly. I’m praying those antibiotics work quickly and effectively so he can return to a nice calm baseline. Because, Friday we leave for our big vacation.
I didn’t expect it but I’m a mix of emotions right now. I’m so excited for the trip. But it’s really hitting me that I’m leaving my babies for three weeks. That is a long time. So, right now, the thought process goes like this—excitement, guilt, trusting that this is a good thing, anticipation, I need to remember to pack such and such, worry, trusting that God is in control, still worry, singing “He’s still on the throne”, peace, guilt, recounting how God has brought the trip about, peace, excitement again. Being Human is tiring, mentally speaking! I’m glad God walks through life with us, always working to direct those thoughts back to Him. The trip will be a good one, we trust! We have friends and family members looking in on Philip and Joy daily. They will be well-taken care of. Joyanna will love all her visitors.
Please continue to pray for our summer. Safety, rest and fun for Ben, Ethan and me. Grace and strength for our little ones here. Speaking of grace, this song came to mind recently and I knew (though I’ve added it before) that this was the song to print today.
He Giveth More Grace
He giveth more grace when the burdens grow greater,
He sendeth more strength when the labors increase;
To added afflictions He addeth His mercy,
To multiplied trials, His multiplied peace.
When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.
Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.
Chorus
His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.