It has been a busy and stressful six months since the last progress report on Daniel.
He has continued to work hard in therapy, and as we approach the one year anniversary of his SDR surgery, we are grateful to step down to a once-per-week physical therapy schedule. He continues to improve, and we are pleased to see him gaining weight and building muscle in his legs. Right after his surgery we were given knee immobilizers for him to wear at night. When he got them they fit very well around his thigh. Now, we can still get them closed at night, but he has built up so much thigh muscle that we can just barely get enough velcro to adequately secure the top of the immobilizer. This is exciting! Muscle bulk means improved strength for Daniel’s legs, and he has worked hard for all of it.
We have not seen the degree of progress in walking that we had hoped to see by this time. This doesn’t mean it won’t come, but one huge hurdle for Daniel is fear. Please pray for him about this. We want him to be able to overcome his fear of falling so he can have confidence in standing strong. The other day he walked with me from the mailbox to the front door of our house. He did not have his walker with him and he just held on to my hand. Initially he was very fearful and didn’t believe he could do it. We had just come from Vacation Bible School where they had talked and sung about Jesus being our strength when we feel powerless. We talked about it, and prayed and Daniel walked really quite well holding only on to one hand all the way to the door. He was excited and proud of himself for this accomplishment. It showed that he CAN do it, but he needs to look beyond his fear in order to do it.
He finished up his second (and last!) year of Kindergarten in May. He has had wonderful support at Independence Elementary School. We are so thankful for the loving care and awesome helpers he has had there. He is still delayed academically, and we would ask for prayer for him in this area as well. He is bright, but he has a lot of trouble with putting letters together to make words, and remembering words he has learned. He seems to have a visual processing difficulty that we have not been able to get to the bottom of yet. He has some strength in the area of math and this is an encouragement.
We have continued to struggle with his seizures throughout the first half of 2018. We have been in the hospital four times dealing with seizure-related stuff this year, and frankly we’ve had enough of it! He has had three seizures in the last month, two while we were on vacation. All of the seizures this calendar year have happened approximately ten minutes after he has fallen asleep. We feel somewhat relaxed during waking hours at this point, but try to never be without our seizure bag which has all we need to deal with any seizure that comes up anywhere we happen to be. We continue to be in close contact with Daniel’s neurologist and epileptologist and continue to work with his medications to try to reduce the number of seizures he has been having. The seizures are serious and potentially life-threatening as they are lengthy and he stops breathing during some of them. This has been very stressful for our family and very discouraging when he has another one.
Daniel just finished up a week of camp at DASA’s (Disabled Athlete’s Sports Association) Camp WeCanDu. Those of you who follow us on Facebook have seen some pictures of a very happy boy doing some really fun stuff this week. We were so thankful that he had this experience. It was really amazing to observe this camp in motion. Daniel did not stay overnight, so each morning and evening we transported him, so we got to see more than just the initial drop-off and end of the week pick-up. Imagine a camp where the entire camp is handicap accessible. Cabins are all wheel-in, every building has no stairs, the pool has a wheel-in shallow end. Seriously, I couldn’t have even imagined it before I saw it. Every camper has some sort of disability. Have you ever seen 80+ happy kids amongst a slew of artificial limbs, wheelchairs, various types of equipment to make activities accessible for them? It was amazing.
More amazing still were the camp counselors. You know what camp counselors are like. They are college age kids having a blast for the summer. Same here, except these young people spent their week carrying kids who couldn’t walk, dancing with kids in wheelchairs, helping kids without arms or legs to swim, dealing with their special needs, which includes things like feeding tubes, respirators, toileting issues, bowel and bladder routines that can take up to 90 minutes.
Can you imagine a group of young adults giving completely selflessly for an entire week – (round the clock we’re talking here!) – to enable children, who for 51 weeks of the year live in a world where they are different, to have a week of absolute fun with a whole bunch of kids who are all different, so they are all the same? I am brought to tears by this group of young adults. They all deserve much more than an enormous round of applause.
Change Is A’Comin’
Without taking the time to get into all the details, while we were on vacation God took us through a series of experiences that upset the apple cart, so to speak, and caused us to realize that He is taking us back to South Carolina. This was completely unexpected, as our plan was to stay in Missouri for some time to come, especially since Daniel’s school experience has been so very good. However, many of you know that our experience with Missouri Medicaid has been very difficult. By a providential error, Daniel received Medicaid for the first year we were here, and his SDR surgery and immediate follow-up were covered by the State of Missouri. This was a tremendous blessing. However, since October, we have not had Medicaid for Daniel, but have been put on a spend-down program where if our medical expenses exceed $3300 per month, Medicaid will kick in and cover the rest. Just before we left for vacation we learned they were bumping our spend-down amount up to $4700 monthly. We have struggled a great deal with his medical expenses and with trying to satisfy the confusing paperwork procedures to meet the spend down requirements. We have not been able to have a personal care aide here, and this has taken its toll on David and me. Physically we are hurting. The amount of lifting and carrying and helping Daniel has been very hard, and we really need some help at home.
South Carolina participates in a program called TEFRA/Katie Beckett Waiver, which is based entirely on the needs of the child and does not take into account the parents’ resources. Missouri does not participate in this government program. We are on (or about to be put on) a waiting list for a waiver program here in Missouri which serves only 366 individuals in the State at a time. We would likely be waiting another year or two before Medicaid would come through for him. We would be able to have Medicaid and get an aide within 3-6 months in South Carolina. It is very interesting to see how God has worked on Daniel’s behalf through our various moves. When God took us to North Carolina, he used the waiver program (through which Daniel got NC Medicaid) to provide Daniel’s power wheelchair and our wheelchair accessible van. We would not have gotten these in either South Carolina or Missouri. When God brought us to Missouri, he completely covered Daniel’s surgery last year through the Medicaid mistake. Now, it seems he is taking us back to South Carolina and we trust that he knows what lies ahead and will continue to provide for our family.
Moving again is daunting, of course. We have really liked living in Missouri, and are sad to leave friends and a church where we have been involved for the last two years. We are sad to leave the amazing school where Daniel has been so loved and cared for and where we expected Hannah to have the same teacher Daniel has had for those two years. Leaving doctors and therapists who have walked with us through some challenging stuff is sad and a little threatening. However, we have been praying for relief and it is our sense that God is answering that prayer through this move. We are planning to relocate before the middle of August for the kids to start school in South Carolina. Please be praying for us as we undergo this process. Please pray for the children as they undergo another transition. So far they are kind of sad about the prospect. It is a roller coaster of emotions for all of us. We have a lot to do, and we need all the help we can get. If you feel led to help us, please reach out. Thank you!