For example, Ben’s going to build the shelves for the playroom part of Philip’s room and then that room will be done. I’m including pictures of the room thus far. We’ve finished all the little projects that were taking longer. I feel in a way that working on this project has allowed us to express our love for Philip. There’s just not a lot that we can do anymore for Philip to enhance his daily life in what you would consider a normal way. We read and sing to him and he listens to CDs. It’s hard to carry on a one-sided conversation beyond a few minutes so completing this room for him to make it easier on him and have a nice place in which to care for him is an expression of our love. I know it’s also helped me understand my husband’s thoughtfulness for me because it affects me daily most of all. Now, with everything I need for Philip’s care at my fingertips, it makes that a lot easier. I’m thankful for the time he took to complete those conveniences for me.
One thing we did not expect to come with the summer is every sickness seemingly. It’s such an odd time for all these sicknesses to be going around but Ethan has caught every one of them I think. He’s now sick with a stomach bug. We’re not even sure what the last one was but he got over it. Just as he was getting over it, Joyanna caught it. Thankfully, Philip didn’t catch that one. It had a high fever for several days and that would have been devastating for him. Neither he nor Joyanna has shown signs of catching this stomach bug but it’s not over yet. Usually when the summer rolls around, everyone breathes a sigh of relief because sicknesses are typically over. Maybe not this year!
Joyanna transitioned out of her medicine right when she came down with that sickness. That makes it impossible to evaluate seizures because a high fever usually lowers the threshold for seizures. Her seizures did get worse at that point and I was disappointed but then when I realized she was sick, I knew that would affect them. Last week, when she was getting better, her seizures decreased but she is still having a few more drop attacks then we would like so we are in the process of starting her on the new medicine, after it jumps through a few more insurance hoops. Those extra seizures have slowed her down a little bit but she is still doing pretty well. She’s definitely having trouble with shapes, colors, etc. She’s also lost the ability for most kinds of pretend play.
Philip’s congestion got much worse last week around Thursday. He was doing a lot more choking and gagging, even some vomiting reappeared. I wondered if the allergies worsened but his and mine seem to parallel and I wasn’t having any more trouble. I realized that probably his Zyrtec had lost its effectiveness. The body builds up a tolerance to these second generation antihistamines (like Zyrtec) and they are no longer effective. Because I started him on Allegra Monday night, things were better by Tuesday morning. Allegra still doesn’t work as well for him as Zyrtec but we’ll stay off of Zyrtec for a couple of weeks so that he can start taking it effectively again.
Please pray for me. I am having considerable nerve pain in my right foot, especially at night. Thankfully, I had a routine physical scheduled this week and was able to discuss it with my doctor. He prescribed an anti-inflammatory so we will see if that will work. I am favoring my left foot for most of my weight-bearing (picking Philip up) but can walk fine. It is just interfering with my sleep and that is almost more important to daily function than a foot that doesn’t hurt.
We enjoyed Ben’s mom being here. She and I had several good conversations that were an encouragement. She is caring for her 90-year-old mother who has dementia. Many of the care-giving responsibilities are the same as mine. We can definitely relate to one another right now. She really helped me to understand care-giving in a different light than being a normal mom. You really can’t have the same outlook on these tasks. I know I am Philip’s mom and love him the same as my other two children. His care is part of what God gave to me as his mother, but she helped me see that I shouldn’t feel guilty if I can’t spend the same amount of interactive time with him as with Ethan or even Joyanna. The stages and seasons they are in are different thus calling for different levels of care. This is where I have seen that I need to trust that God is taking care of Philip’s abstract needs in times where I cannot. God can use me to take care of his physical needs but not always will He use me to meet his mental and emotional needs. I truly believe after watching his content spirit for the last few months that Jesus himself is meeting these needs for Philip. I believe He can and will do that. I believe your prayers for Philip have been a part of these needs being met.
We have no word on timing for the bathroom yet. We will post more when we know it.
Thank you for your prayers for our family. God is showing Himself mighty in our daily lives.
My God is so big, so strong and so mighty
There's nothing my God cannot do
My God is so big, so strong and so mighty
There's nothing my God cannot do
The mountains are His, the rivers are His
The stars are His handiwork too
My God is so big, so strong and so mighty
There's nothing my God cannot do.
My God is so great, so strong and so mighty
There's nothing my God cannot do
My God is so great, so strong and so mighty
There's nothing my God cannot do
He made the seas, He made the trees,
He made the elephants, too!
My God is so great, so strong and so mighty
There's nothing my God cannot do
There's nothing my God cannot do…FOR YOU!
This is one of Joyanna’s favorites! She flexes her little muscles when we say strong and points at the end, “FOR YOU!”