Just as soon as Philip’s hard and tiring week was over, he had a little upswing and had a happy week last week. We saw smiles on several occasions. He also was smiling for his teachers at school. His smiles just have to brighten your day. I get fixated on what I think is hard for Philip and feel sorry for him and then the Lord shows me that He is taking care of Philip just fine. It is still true that Philip is one of the most content children I have ever seen. He rarely, rarely cries. Of course, he doesn’t show much emotion anymore but if you see it, it will likely be smiles. Tetrabenazine was denied the second time around as well. We have a neurology appointment next Tuesday and can discuss different options or further appeal. Pray we will have wisdom for those decisions.
Joyanna did not have such a good week. In the past, I have seen a roller coaster effect, especially with Philip when he was at the 4 or 5 year mark. He would have a good week then a bad week and so on. Maybe that is what we are seeing now with Joyanna. I pray that this week is better for her than last week. I mentioned that we made 3 medicine changes for Joyanna. We just made the last change before that post and it seemed as we evaluated that it had not helped her very much, maybe even threw off her balance and emotions a little more than normal. We decided to leave it where it was but not make any more changes for right now. We believe the Lord would have us to wait. Please pray for her though that she would have special grace and strength as we wait. *Note: As I’ve written this over 3 days, she has had better times than last week but there are still some specific hard areas. She is having trouble screaming again, it seems just randomly. Yesterday, I just sat and rocked her during that time and that did help her calm down. However, she had great therapy sessions today (Wednesday).
We found out shortly after the post that the intrathecal infusion pump is not going to work in Joyanna’s situation. The instability of the medicine is the cause that was given to us. So, we are back to the shunt reservoir option. That’s ok. We appreciate the neurosurgeon putting thought into it. We are still waiting, of course, to hear any word from all doctors involved with the enzyme treatment. We are 8 days from an approval hopefully. We are praying the ball will begin rolling then.
Wait. Wait is what we must do. My husband’s natural disposition lends itself to waiting a little easier than mine. I feel the strain of the wait a little more as time gets closer and I can still do nothing. I just want to call all the doctors or the company or somebody!! I have decided to compile many verses on waiting and post them around. Here are some of the ones I have chosen:
Isaiah 40:31-But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Psalm 130:5-I wait for The Lord, my soul doth wait, and in His Word do I hope.
Lamentations 3:25-26-The Lord is good unto them that wait for Him, to the soul that seeketh Him. It is good that a man should both hope and quietly wait for the salvation of the Lord.
Psalm 62:5-My soul, wait thou only upon God; for my expectation is from Him.
Psalm 37:7-Rest in the Lord, and wait patiently for Him…
I’m also trying not to let my expectations rule my entire being. Even though it looks like it will be approved, they may not or they may postpone it again. Working everything out to start it may take months. There is no way of knowing. I don’t want to be sidelined if it doesn’t work out the way I think it will. Please pray with me that truly my expectation will be from the Lord. I think and sometimes tell the Lord, “If you do this miraculously then so many will glorify Your Name.” As I’ve learned over these years about petitioning God, I think it is right to pray that He would be glorified in our requests. But we don’t always know the way that His name should be glorified or through what means. He knows best…always.
Waiting is never easy. But as God has graciously walked with us thus far in the journey he has taught and is teaching us that resting in Him is always better. Someone told us a few months back, “I haven’t known any who regretted waiting on the Lord, but I’ve known quite a few who regretted acting quickly without the Lord.”
I know many of you are waiting with us and that is an encouragement in itself. You are also praying and only eternity will tell the difference that has made. Thank you!