His teacher sent me this picture on Monday. His new classroom has a smart board. His teacher opened an interactive game and he loves to play with it. When he touches the screen, it makes noises. He loves sound effects anyway so I'm sure he has a blast with it.
I am looking forward to getting the feeding tube on Tuesday. I didn't think I would be saying that but as we continue on the journey, things change. At this point, I am ready to know for sure he is getting enough calories and fluids. He has lost a little weight in the last couple of months, just a pound or so but that's enough for me. Some of his other minor health issues are stemming from a mild dehydration and I am ready to put that behind us. Plus, right now in the family life, I am having to prioritize needs to take care of everybody. Philip greatest need right now is to get enough food and water in. It takes a while to do both so I feel like I don't get enough time just interacting with him--singing, reading, playing. I am excited that with a feeding tube and feeding taking much less time, I will have time to spend with him. Ben and I realized the other day that this is the first time we have been able to plan for a hospital stay, the first time we will check into the hospital and not go to the ER.
After a slight increase in Joyanna's seizure medication, we have had no big seizures for two weeks. I cherish each day that goes by that we don't have one. I know there will likely be more but I am glad to go to bed at night not having dealt with one. I have seen an increase in smaller seizures. This changes with how tired she is or how worked up she gets about something. Also, with the medication change, we're dealing with a few more behavioral issues. She has a shorter fuse. I'm starting to notice that she has to think a little longer about the color of something or what shape that is. Sometimes she'll answer wrong first and then correct herself. It's not the majority of the time. Mostly she still does pretty well. It's hard to tell if that is due to seizure medication (very probable) or NCL and its course. She was really having trouble seeing the TV Wednesday when watching Curious George and actually asked me for her glasses. When I put them on, she was definitely puzzled. You could tell they were not helping her to see more clearly. When I asked her if she wanted to take them off, she didn't answer but when I came back in the room she handed them to me. They'll probably fade from the picture just like Philip's did now that we know they're not really helping the main issue.
I know this might not make sense but the days have been good. Philip has enjoyed better days. Joyanna is still mostly herself. Ethan is growing by leaps and bounds. With Philip going back to school, I have had the chance to get caught up on some housework and spend personal time with Joyanna and Ethan. And I don't feel bad about that because I know Philip is enjoying school and he is still able to handle the outing each day. God has worked through gracious friends and Ben and I have been able to have time out with each other by ourselves. We feel strengthened by that. We receive so much encouragement by way of mail and email and our friends and family we see here. I have had some of the most precious times with the Lord recently. His grace has enabled us to literally leave the future in His hands. Other than needed planning (surgery next week, doctor appointments, etc.), I don't think about what the future holds. The Lord has shown me that I really don't know anyway so it's all just a guess that brings heartache I wouldn't have to experience if I just leave it to Him. I have found such a freedom in allowing Him to take care of it all. I was talking to my brother and sister-in-law last week and in conversation I said this: "I have found a rest I never knew existed." I really didn't plan to say exactly that but after it came out, I knew it was right. In fact, this song has played on repeat on my phone for a couple of weeks now. I cherish every line of it.
Rest
Rest, the Lord is near
Refuse to fear, enjoy His love
Trust, His mighty power
Fills every hour, of all your days
Chorus:
There is no need
For needless worry
With such a Savior
You have no cause to ever
Doubt, His perfect Word
Still reassures, in any trial
Rest, the Lord is there
Lift up your prayer
For He is strong
Trust, He’ll bring release
And perfect peace, will calm your mind
(Chorus)
Call Him
If you grow frightened
Call Him
With loving care
He’ll lift the burden and you’ll
Rest, the Lord is near
Refuse to fear, enjoy His love
Trust, His might power
Fills every hour, of all your days
Rest, the Lord is near
Refuse to fear, enjoy His love
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