Philip:
Philip started having tonic seizures again. This is not completely unexpected with his disorder; seizures will always change. They are not as intense as they used to be but I immediately started to evaluate to see what might have caused the change. When we increased his medication, it shouldn’t have caused a change like that. They have been happening the same time every evening so I decided to start moving his seizure meds back from bedtime to 7 pm. His doctor suggested we try that for a few weeks before changing medications. We are one week in and it seems to be working. I haven’t seen them every evening or if I have seen them they have been much smaller. He has been more active as well, which is a pretty good sign. I truly believe the Lord directs my thinking to these areas because we changed his medicine from three times a day to two times a day four months ago and I wouldn’t have naturally thought of that.
Philip made it to every day of school last week and so far this week. He really likes school, mostly his friends in class. His teacher told me in March that one boy has really taken a liking to Philip as his friend and does almost everything for him. I’m sure Philip realizes this attachment. He has always seemed to understand those special relationships. It is slight but I can tell a difference in Philip’s demeanor on school days as opposed to when he stays home. I’m most indebted to Philip’s teachers and therapists at school for loving on my boy and being such a help to our family. They truly make a difference.
The approval process for Philip’s wish has taken a while. We understood and weren’t upset by the process. Philip’s wish is not a normal Make-A-Wish so it needed a little more time. The only thing that we could settle on with his wish volunteers was something that would make his life a little easier and thus better on a weekly basis. Pretty much the only thing that causes Philip stress every other day is a bath. Given the current layout of our bathroom, I have to undress him in his room and carry him into our small bathroom right into his bath seat. Then after we’re finished, I wrap him in the towel and carry him back to his bed. Philip doesn’t like not having his clothes on or the insecurity of the whole thing. What we proposed was a bathroom remodel to make it handicap friendly. We don’t have the space to make it handicap accessible but we have settled on the term “friendly”. Due to another blessing (our new HVAC), we now have a closet open right behind the bathroom and a coat closet that could easily be vacated. This would expand the bathroom just to be able to have space to put a bench where we could lay Philip down in the bathroom and undress him there and get him dressed again without having to move through the house. Make-A-Wish Oklahoma has not done a wish like this before but it was approved last week. We’re not sure on the timing and honestly, we are content to wait because we know it will be the right timing when it all comes together. We are very humbled to be considered in this endeavor. It will make things so much easier for Philip and Joyanna, and yes, for me too.
Joyanna:
Joy is off Keppra. Yeah! I can’t tell you how many times a day I am thanking the Lord for this change. When I see her playing in the playroom, with Ethan or alone, she is able to play so much better. In the last two weeks, she hasn’t been upset at each bathtime. (We used to have screaming all the way through.) Sometimes, she’s even been helping me. Of course, I’ve already mentioned the talking increase which really helps daily. She is even more affectionate and we see very little hitting or kicking. We’re still working on throwing things when she’s upset but I feel we’ve made progress. Mealtime is still a bit of a challenge but there, too, we’ve taken a few good steps. Now is the time I need to start watching closely for seizure change. Now the medicine is almost completely out of her system and the transitions will be ending. She has been shaky and sometimes unsteady but now I can determine if that is because of “withdrawals” or the good effects of the medicine that have worn off. We have a medicine waiting in the wings to start if we need to. But we want to give time to make sure she actually needs it.
Her birthday was fun. Chocolate cake, chocolate ice cream. She was excited about both. We had a small family party and she opened a couple of gifts from us and cards from Poppa & Granny and Grandma. She was almost more excited about going to the “Flower” class at church for Sunday School than her birthday itself. While we decided not to put Philip in the regular 4-year-old class when he turned 4, we felt like Joyanna could go and be fine. Her teacher, Mrs. Amy, was ready for her with stickers, little toys and books to help her sit still in class. She has already been a blessing, wanting to help Joy in so many ways to transition to that “big girl” class.
Along with all our other news, Ethan had hand, foot and mouth two weeks ago. Philip may have had a slight case. It’s hard to tell. He never ran a fever but was not himself for a few days. He stayed home from school almost that whole week. Now, Ethan has something else. I’m not sure what’s going around but he’s catching things now. I’m keeping him somewhat separated from the other two, as much as a little house will allow. I think it’s interesting that my “healthy” one is getting sick. Philip and Joyanna have stayed well. I believe God’s hand of protection is responsible for much of that. Along with all the other little things in life, we’ve had a lot going on. It’s going to get a little busier still with the college semester ending soon and graduation upon us. There are many special activities that coincide with those events. Most notably, we get to enjoy a visit from Grandma. Ben’s sister, Allison, is graduating from Heartland and his mom will come to attend the graduation. She will stay for a few days. It will be good to see her.
We are looking forward to summer. Our lives slow down considerably when the college is not in session. We have plans for our vacation times but I remind myself to hold those plans loosely. God is the One Who really has the plan for our lives and we trust Him to work that in His time. He has not failed us. Every day that passes with His strength, His grace, His peace ruling our lives are just monuments of Who He is. The more I walk on the Journey, the more I know what a good, righteous, faithful, holy God we are privileged to call our Father.
May He bless you all for your love and prayers! Thank you!