Philip is getting settled but naturally, there are some bumps in the road that must be smoothed out. We’ve had good communication with doctors and nurses. We’ve still been involved in his care daily, whether present or by phone. There have been a few hard times with extra vomiting or more seizure activity but that has not been the case as a whole. He would have those times at home as well so really there is probably not a lot of difference. We have tried to give as many helpful tips to the nurses about Philip’s quirks as we feel we can. On a good note, there are things that we couldn’t have addressed at home that are now an option in the Children’s Center-therapies, medicines, treatments. That’s a blessing--and also another confirmation that he needs to be there now!
Tuesday had some really hard times! All of the last things that Ben mentioned in the post last week were real grieving times. We allowed ourselves to grieve those and the Lord gave comfort then great peace as we moved into the idea of all the firsts at the Children’s Center. Since then we have felt peace in trying to help the nurses and checking in daily but we truly haven’t felt guilty that we weren’t there all day each day. I am so thankful for that. It can only be the Lord’s grace in a situation like this. When the rough patches have come in his transition, I have literally reminded myself (sometimes aloud) that the Lord is there with Philip and that we are assured he should be there now. Therefore, nothing is out of God’s care, even a rough time for Philip. Please pray for us as the days and weeks turn into months that God’s grace would still allow us to be balanced with care for Philip--without guilt and with peace. We certainly can’t maintain that balance without His grace.
We spent a few hours at the Children’s Center on Christmas morning. They allow families to reserve a family room so that our other children can be with Philip. We can bring Philip into that room. He slept the whole time but that’s okay. He really doesn’t have the cognitive ability to realize the situation so it’s mostly for our benefit. We recognize that and enjoyed the time. Ethan doubly enjoyed it because he got to open all of Philip’s gifts. In fact, Ethan has been the designated opener this Christmas so he’s had a lot of fun. You know, opening IS about half the fun of the gift time. Joy isn’t coordinated enough to open the gifts so with a few exceptions, Ethan has opened all the presents.
We are thrilled that God has seen fit to continue to allow Joyanna to receive her infusions--another 6 months approved in a short amount of time. I was really ready for Him to use this situation to show us that she should stop receiving it. I was surprised honestly when the nurse told me it was approved for 6 months. We’re not sure what God wants to accomplish through it but we are glad for answered prayer and the fact that He has a plan. She has continued to do well over the last few weeks even without an infusion in the middle. We’ll see what 2018 holds for her.
We’ll see what 2018 holds for all of our family.
I Know Who Holds Tomorrow
I don't know about tomorrow
I just live from day to day
I don't borrow from the sunshine
For it's skies may turn to gray
I don't worry o'er the future
For I know what Jesus said
And today I'll walk beside Him
For He knows what lies ahead
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand