Thursday, September 29, 2011

29 Sept 2011, Progress Abound

8:43am. It's been about 2 months that I have not blogged regularly. This photo of Donavan can help to explain this. It was taken on the way home from physical therapy last week. Donavan has PT almost every single day after school. High School ! For the first time in 4 years our son began school on his own two feet, without use of a walker, wheelchair or crutches!! It has taken way more work than even we anticipated. In this photo he is seated next to his now, 1 yr old sister Lilah. He had confiscated her bow because she was chewing on it and it scared him she would choke, so he stuck it in his own hair. Being on his feet all day at school and then jumping off the school bus and running to PT is a mighty job. He grabbed up sissy's blanket and passed out on the short ride back home.... Donavan also has PT early Saturday mornings which is a real drag to him for it to be on the weekend, but he pops up speechlessly and knocks it out. We know that he does not need reminders as to how crucial it is he makes there every appt. In 8 days John is making the trip to Baltimore for Donavans 22 week post op review appointment. We must go every 12 weeks!! Its so hard on us every which way. We all grow so anxious about what the new xray and measuring will reveal about the new femoral head and newly established blood supply to the hip. This reconstruction cannot be under estimated. The surgery was enormous, the recovery has been slow and frustrating. Donavan's still dealing with a leg length discrepancy of 3 cm's that has his limp in full swing :( Sure, some of it is the atrophied pelvic muscles and the lameness of his quad and hamstring but there is a definite leg shortage that we must unfortunately address either at this appt or very soon after.It will require a leg lengthening surgery this summer ( another summer lost, sacrificed by Donavan to try and gain some normalcy to his life) We afforded one pair of sneakers with a built in lift on the left side, for him to begin high school. These shoes are already worn out and inflexible. That's a huge worry because they were very pricey but Donavan cannot go without suitable shoes or his spine begins to compress again from the strain of his constant limping..... So, our wish list begins again with new shoes with built in lift by Hangar Orthotics, here in Beaufort. He will need new ones about every 3 months I am afraid. The cost with reasonable sneakers and the lift is approx $170.00. Our physical therapy cost have mounted far above what Tricare allows  and we just cannot swing the needed footwear. Donavan has also kept his weight down which has a huge impact on his well being. He has completely stopped consuming any soda pop whats so ever as it impedes bone growth and density!! This was so hard on him because it was just about his only teenage guilty pleasure. Someone extra special even packaged and shipped him some of his absolute favorite soda from Texas, Big Red and after that was gone he has not had anymore. Donavan is fiercely dedicated to his own recovery. With his new homeopathic supplements and managing his pain more conservatively with natural Arnica he has begun to actually see a glimpse of what a pain free life one day may be like. That I know is what drives him at the very young age of 14 ( 15 in November).

     With John in full time clinicals at the nursing home and hospital and also working and attending classes we have a very tight schedule and very little funds. I am the runner for Donavan and we have to go every day, with sissy in tow :) It is truly a labor of love for me, however I have been wearing down quite a bit lately. We were swimming at the Y, 3X's a week as well and I have not been getting Donavan there as I was. 8 pm arrives and I don't even know myself anymore. I pray for renewal in spirit and a renewed commitment to our son and his full recovery. We are looking at another 12-24 months before we know what all this reconstruction has left him with. If we stop, we will move backwards.... rapidly and I won't let that happen! Donavans doing so well in high school. It has eased my worry that it would be too much for him, as there are stairs he must climb constantly through out the day. He refuses to use the elevator in front of his fellow freshman. I do not blame him. He was supposed to be issued an extra set of book at the very beginning of the year and was not until just yesterday :( He has been packing around a 31lb book bag against doctors orders. Praying that too will not impact his new hip at the appointment. So easy to warp or aggravate the hardware holding him together. I cling to high hopes that the acetabilum is contained and that nothing is growing the wrong way with any deformity. If you were following along with us before as I blogged every night, please join us again as I pick back up with further reporting of Donavans condition and progress. We have had some very very interesting folks come into our lives through this entire experience and it has been just so wonderful, I do not want it to stop. Have a great afternoon C :