Philip even returned to school today although he gets a 4-day weekend due to parent teacher conferences. He has uncanny timing when returning to school. Last time he was out for a few weeks he returned right before a 4-day weekend.
Joyanna is getting stronger every day. This makes my heart really happy to see. I just wasn’t sure what she would even gain back. She was so weak for that week and a half. We also raised a seizure medication for her which I can tell is improving things for her. She is definitely not back to where we were before the sickness but there is hope now that I see her getting stronger. She has been playing in the playroom and has been much happier over all. She is also eating very well. That’s where I thought we would lose a lot of ground but today she finished a good sized portion at lunch. She was grumpy at the beginning of the week due to the medication transition but has returned to her sweet self for the most part.
I talked with the genetic counselor yesterday and she had received a reply from the rep at BioMarin. Unfortunately, she told her what I had already told her, which means there is nothing more to know right now. We wait. Thank the Lord for the renewed strength while waiting. Isaiah 40:31 “But they that wait upon the LORD shall renew their strength…”
We are also very thankful that everyone is better because our church has our Marriage Retreat this weekend. My husband always takes great care to make sure we can go so we weren’t sure with the sickness hanging on if that would happen. As of today, we are still planning to go. We look forward to this break and reconnect each year; also good fellowship and teaching. Please pray for the two ladies from our church who are staying with our children. They have watched them at other times but this is their first time to watch them overnight. I am sure they will do a great job but Philip’s care in particular can seem a little overwhelming at times. I forget that my normal is not normal especially when I’m trying to write all the instructions down for double checking (a little over 3 pages!). I love how the Lord has just made this part of my daily life and I don’t even think about it anymore. His grace is amazing!
Thanks for praying!