So life was really nice when Thomas was home. As I mentioned in the previous post life wasn’t “easy”. Thomas is high maintenance, he requires a lot of attention. We were so very fortunate to be offered residential habilitation from the agency handling Thomas’ Medicaid and On Your Mark, a special needs organization that provides programs and activities called to say they had an opening! Thomas has been on the waiting list for years literally. It was an exciting time because so much was coming together.
I adored the Hungerford school and I loved his teacher, Connie. She even gave me her cell number in case I had concerns outside school hours. Incredible I tell you. The activity program at On Your Mark was wonderful. The staff there was unreal in that they were so, so, so good with the kids. I seriously could talk for hours about how wonderful the staff is at Hungerford and On Your Mark. Thomas went to an On Your Mark location every Saturday from 9:30 to 1:30. We were thankful as weekends are without much structure and Thomas thrives on structure so this was perfect. They did art, yoga, sports, cooking, etc… Wonderful and he really enjoyed it. It was a win/win situation.
The residential habilitation (res. hab) person started. Her name was Dee and she quickly became one of the family. I remember in the beginning Thomas was allowed 3 hours twice a week with Dee and she would come to the house. So we worked out a schedule and goals which included Thomas playing and working things out with his sisters. Dee really was wonderful. We trusted her and she us. All the girls loved her as well and she would include them in any activity or craft she worked on with Thomas. This went on for about three years. No aggression from Thomas. Activities in place and a wonderful res. hab. person. Seriously, what more could we ask for?
A couple of Thomas’ meds required regular blood draws to ensure the blood level was fine and/or to check that his white blood cells were at a normal level and not dropping. Twice when Thomas was at Andrus he had an issue with his white blood cells falling at a lower level but after a repeat blood draw they would be fine.
Now that Thomas was home, Dr. F took him on as a patient again. I was thrilled as I adored and trusted him. One evening after I had taken Thomas to have a blood draw, Dr. F calls to tell me Thomas’ white blood cells were low. Unfortunately this is a side effect of one of the medications he was taking at the time. I naturally panicked and Dr. F calmed me down saying we will contact the pediatrician and repeat the blood work. Thankfully Thomas is wonderful with blood draws. The test was repeated and came back normal, whew!
The feeling of relief did not last long as future blood draws showed Thomas’ white blood cells dropping to a level that was close to being unsuitable for the registry of this medication. Dr. F suggested we see a hematologist. I asked the pediatrician for a referral and an appointment was made. Dr. G was great. She confirmed that all of Thomas’ meds had the potential to lower white blood cells but the one in particular was well known for the side effect. She would monitor him to ensure the cells not get too low.
We saw the hematologist for the next 2 years, faithfully with Thomas having blood draws every 2 weeks sometimes every week at a satellite site connected to the main hospital where the hematologist practiced. I praise The Lord for giving Thomas the gift of tolerating blood draws in such an awesome way. He doesn’t flinch or give anyone a hard time.
Finally it got to the point where the white blood cells were remaining low according to the parameters set by the over-see-ers of this particular medication. Thomas remained in good health but Dr. F feared we would not be able to have his prescription filled. I had to present the blood work to the pharmacist each month for a refill. Dr. F suggested we take Thomas off the medication. I was hopeful as his behavior had been so good that perhaps we could do this and everything would turn out fine.
One could hope right?