It has been a long while since I have posted an update. You might think it is because things are going so well and we’re all having such a great time that we just haven’t had the time to write an update. That would be lovely, but you probably know that isn’t likely the case. Truthfully, we are struggling a great deal. If you are someone who knows and loves Daniel and prays for our family, thank you very much. We appreciate that so much and we need prayer support.
Covid-19 has caused the summer to be difficult and disappointing for us as it has for everyone. We have been trying to do some nice things – like decorating and setting up the kids’ rooms the way they would like. We’ve been here for almost two years now, and we think we are going to be staying for a while, so we are painting their rooms and decorating and arranging and the kids are very excited and happy about these changes. We went to the beach one day a week or so ago and we had a nice time playing in the water together. We have been extremely blessed to have been approved for many more Personal Care Aide hours for Daniel than we have had before. In addition to his wonderful 20 hour per week daytime aide, we have been blessed by a lovely, gifted nursing student who is covering two nights per week and some extra afternoon hours as well. Because of the Coronavirus situation her internships were cancelled this summer and we have been the grateful recipients of her time, creativity and loving assistance with our children. She stays Tuesday and Thursday nights, which means that every other week David or I get three nights in a row in our own bed! That this is something we get excited about just speaks to the abnormality of our situation. Sleep continues to be a big problem for Daniel and for David and me as a result.
Last week Daniel finished taking the steroids, and we are now eagerly waiting for an EEG to be scheduled to determine what the level of epileptic spikes are in his brain while he sleeps. He has not had any seizures since one in mid-May. This is wonderful and it adds up to only one seizure in over three months. We are glad for that, but we are admittedly on guard each day wondering when the next one will come. We are unsure about the overall benefit of the four month course of steroids. Daniel’s behavior continues to be very difficult to manage, and while we are seeing some improvement in his learning, it is not to the level we were seeing when the steroid was at its highest dose.
Physically, Daniel is also very hard to manage. Those of you who have seen photos of Daniel on FaceBook probably noticed he has put on weight. Here are a couple of side by side photos of Daniel from mid-March and mid-June.
It is shocking to me the difference in this short time. He has gained 15 pounds and when the starting place is 63, that’s almost a quarter of his body weight! That’s like a 180 pound person putting on 45 pounds in three months. Add to this the mobility challenges he has, and the muscle pain caused by the steroids, and you have a boy who has quite a hard time getting around. I cannot lift him hardly at all anymore. He finds crawling or walking in his walker uncomfortable. Thankfully he has been interested in going on family walks in the mornings some days. He rides his bike, pushed by David, but it is at least a little bit of exercise. We are seeing a decrease in his voracious appetite since the steroids have ended and that is a good thing as well. Hopefully he will begin to lose some of this weight and have less muscle pain now that he is off the steroids.
It is hard to put in to words what we are experiencing. David and I are very run down and discouraged by the daily challenges, especially the behavior which can involve, screaming, swearing, throwing things, hitting, biting, and repeated obsessive demands. We are so thankful for the help that we have, but it does not prevent the frequent interruptions and need to address the behavior issues or take away the overall stress of trying to figure out how best to parent Daniel as well as how best to manage his medical needs. Working from home with the kids here all the time continues to be a significant drain on our emotional resources. Pray for encouragement for us, and wisdom in figuring out what is best for Daniel in terms of medications, exposure to others (the steroids have compromised his immune system), and what to do about school in the fall. Thank you for caring about our dear boy!