Friday, March 25, 2011

25 April 2011, 7 more days and a wake up until our departure to Maryland for surgery

Midnight and I have just finished tidying the house and sorting paperwork from the day. Today was a very good day all in all. I was very bummed initially because all the emails and inquiry's had slowed to almost nothing today... made me feel even more desperate then when I could not figure out web design on my own. I believe God intervened in slowing me down though, because I had begun to neglect my normal tasks... finances, laundry, yard projects, organizing Donavan's home school work, Lilah :( I have been on the computer so often lately answering emails and making contacts... that I know she has felt the difference.. This is inexcusable. Also too today was a physical therapy day for Donavan. He has it 3 times a week still, Donavans back and shoulder pain are still very much alive and honestly are not getting better. My worry over that is growing everyday. Its been three months now and he can still barely take stairs at a snails pace and his shoulder is very weak. On off physical therapy days we do the exercises at home and even when Donavan thinks I am not looking, he struggles greatly. I will ask Dr. Standard about all this again when we go. We spent almost 2 hours at pt today. I did not have Lilah with us because John was in between work and school, and it felt so good to give the situation my full attention. I start giving Donavan his pain med about 2 hours before therapy to get it running through his by the time we arrive there he usually now has the courage to face the therapists right away. It did not used to be like this, he used to cringe and become so nervous when we walked through the Naval hospital doors, on towards the elevator to the 2nd floor pt room.. Thankfully we got his medicine dosage raised just for pt and now we should be capable of making more headway. Donavan has a high tolerance for pain medication because his body has known it for so long, on and off. Regular hospital staff and unfamiliar people gasp when they learn he takes 2 Lortab 5's before therapy. Not me anymore,  sure I don't want my son be on a steady diet of opiates for months on end..but when you have tried most every other avenue and all your son does is cry that brings a lot to light. We have done pt in so many different places since Perthes all began, but recently we began at the Naval Hospital here in Beaufort and I must say I am so liking their interest in Donavan and how closely they work with him. I do not know if it is just because he is the youngest one always there, or that they only notice he is not in school..but Donavan is definitely noticed. He has always been the youngest person in the facility, every pt journey... Older folks marvel at him and I do too. At the end today while he was hooked up to the TENS unit for pain relief and cool down, I received a text from him that said " Mom, can you come sit with me"? I fled my seat to get to him. God I love this child. Goodnight C: