Philip is doing better with the scopolamine patch. It helps to control his secretion production. Now that the peak of allergy season has passed, he is doing a little better. We still have to suction him every day a couple of times but I think the worst part is over for a few months…hopefully! He hasn’t been sick again since the middle of October. Neither has Joyanna or Ethan. His seizures are getting worse, even though we just made a medicine change. I think we have come to a time when neurologically things are changing more rapidly for him and the outcome is rapid changes in seizure activity. We have contacted his doctor to increase a dosage where we can. Our goal for the last year has been to make him as comfortable as possible so we will continue to increase medicine or add new medicines to give him relief. I feel I can still visibly see God’s grace upon him as he fights through every day. He is still in school. His body seems to be staying healthy and though we don’t see as much response to indicate enjoyment, I know he loves the interaction he receives every day from friends and teachers. The days are long for him though so he seems pretty worn out when he comes home from school each day.
Joyanna began to show signs for a medicine change a couple of weeks ago too. We decided to try to take her off Onfi, which was causing instability for her earlier in the fall and raise one of her existing medications. We made that change last week. It didn’t go exactly as we thought it would. She is much more unsteady and having many more drop attacks again. We talked to the doctor about her medicine today as well and are awaiting instructions for a change for her. She did well her first month with formula supplements along with her regular meals but this past month, she lost a pound. We increased her formula amount for each day and will continue to monitor her weight gain. She seems less interested in eating so it comes as no surprise. She is starting to accept her braces, knowing that they help her so much. Only one or two days a week does she complain when we put them on. She really does walk much better with them. So much so that we really haven’t let her walk without them at all. We put them on pretty much as soon as she wakes up and only takes them off for nap and bedtime.
We had the opportunity to go to the zoo on Saturday. You couldn’t have asked for a better day to go. It was overcast but not raining. The temperature stayed in the mid to high 60’s and there was no wind. What?!! Yep, no wind in Oklahoma…at least at the zoo. That was great for Philip. He was with us, though he can’t see the animals now. He just hates the wind and I was thinking Saturday morning about how that would bother him. No wind! Hurray for Philip! He seemed very comfortable the whole time. Most all of the animals that we decided to visit were out and easily visible, which is a help to Joyanna now. She really enjoyed it. I took pictures of the animals that aren’t on our San Diego Zoo slideshow and now we have more animal pictures to enjoy. My kids really do love looking at the pictures almost as much as the zoo itself. There is a baby gorilla at our zoo right now that you could literally watch all day… all his antics and interacting with the bigger gorillas. It was a little crowded there because everyone wanted to watch but I got some pictures. Ethan probably enjoyed it the most, of course, and that was great! He gives the running commentary and peppers us with questions only a 2-year-old can think of. It was a great day!
Time change is always a hard time for my kiddos, especially the older two. Resetting our internal clocks is such a neurological process. It’s just harder for them to adjust. Please pray it doesn’t weaken them to the point that they get sick. We want to try to avoid that domino effect.
God has been so good lately. I sense Him working in my heart more and more, helping me to continue to rest in Him. Even with a few things giving out, (our second car, washing machine needing to be repaired), I have not been worried. Before, I would have been worked up over each of them, but as they have happened, I have just been able to look at them as small things and know God is in control of them. My emotions stay much more level that way. It’s so much better. I have had the opportunity to speak to some ladies twice this fall and watch the Lord work through those events despite me. We have just begun a revival meeting at our church yesterday and already the Lord is working, not only in my own heart but in many other hearts, I believe. Praise His Name! We all need to be stirred up regularly. It’s so easy to get self-centered and forget God’s working. His plan is eternal, intricately designed for each one of us. It moves me to listen more closely for His voice and endeavor to be in the place I am supposed to be in order for His name to receive all the glory, honor and praise. We’ll blink and this life will be past…elections, natural disasters, economy, wars will all be unimportant history as we stand before the King of Kings. I will stand before Him robed in Jesus’ righteousness but I want to be able to stand there, knowing I obeyed His voice and my place in His plan was what He intended it to be…By His Grace!
Be Unto Your Name
We are a moment, You are forever
Lord of the Ages, God before time
We are a vapor, You are eternal
Love everlasting, reigning on high
Holy, holy, Lord God Almighty
Worthy is the lamb who was slain
Highest praises, honor and glory
Be unto Your name, be unto Your name
We are the broken, You are the healer
Jesus, Redeemer, mighty to save
You are the love song we'll sing forever
Bowing before You, blessing Your name