I have added this, the Wiki definition of Harvest Season, because our son's situation and condition is very similar to harvest season. In the definition I am sure you can draw your own conclusions as to why I feel that harvesting is comparable to what Donavan is living, from the "cutting" to hopefully the CELEBRATIONS C :
8:55 am
Many people have been asking John and me what we need most for Donavan. So I am going to go ahead and publish this list, for anyone who wants to help or can pass it on to anyone who can. We are BURIED in residual physical therapy & travel costs, getting Donavan to Baltimore every 12 weeks, for his hip to be checked by his surgeon so that no new deformity begins. We greatly appreciate it!
* A Yearlong local YMCA pass (beginning Jan 1, 2012) for Donavan to strength train. He will be 15 in November and has been given the full go ahead to begin a program with guidance. The pool is Donavan's safe haven and where he spends most of his time recuperating. Swimming is 100% joint friendly, having no harsh impact on his hip, knees or feet. Donavan can *never *stop *exercising. Thank God,
the Y has the indoor pool. Also we are looking for anyone who attends our YMCA( Port Royal) regularly who may be a personal trainer that would be willing to donate a couple days a week to spend with Donavan. I know it will be fabulous for him to have a “gym buddy”. I have always been that person and now that my son is maturing he likes not to always be my buddy… I accept this.
* Financial help with custom shoe ware/lift. Hangar's Prosthetic's & Orthotics’ here in Beaufort, is the company that crafts these built in shoe lifts for Donavan. They add the lift into the actual sole of the shoe because he requires too much for just an insert. We are trying to manage the shoes currently, He went through his new school sneakers in 50 days, left heel now almost gone. The cost of the in sole lift is approx. $130.00. Donavan can never go again without proper lifts because of his L leg length discrepancy. It has caused him so much anguish :( His spine was compressing without a lift and the LLD has been inducing a perthes type scoliosis in his back. Looking at Donavan I can easily see with my mother's eye, his posture so off and his tendency to lean forward and to the right with his upper body trying to offset his left side. We will be addressing his leg length discrepancy this appointment in Baltimore (October). Donavan will again be forced into another decision, a growing child should not have to make whether or not he wants to sacrifice yet a 5th summer to a surgery he will have to be confined to Baltimore for (possibly 2 months) to undergo lengthening surgery. It is a decision John and I are leaving up to Donavan. He has had so many surgeries and so many lost months of so many past years to surgery that we feel he is at an age where he should be the one to decide.
He has said to us on so many occasions “I don't want to have any more surgery, even if I have to". When he was younger, we made the decision for him in his best interest. You can do that when they are younger.... not at this age. If you do and it’s not causing you problems, trust us it will! It’s such an ordeal, which is so exhausting every which way around that you must seriously weigh the pros and cons. I personally feel it would be beneficial for him to lengthen. To finally give his hips the advantage that every other teenager has, of being even. Just even. He has not had even hips, since he was 8 years old and the limping has become its own entity, carrying with it a huge complex that stares back at Donavan every time he looks in the mirror. It breaks our hearts and I fear the limp has been with him so long that it will take a miracle to change his outlook. That is exactly what I have asked God for. The walking posture he has created around the limp is very mechanical and has a huge ego of its own.
We leave for Baltimore soon and around that time every time, my stomach begins to be unsettled and my skin. becomes thin. Donavan too, but it begins the very moment we get to the airport, because Donavan has always been terrified of flying. In the 21 times we have flown pertaining to his care in Baltimore now, there has not been one time that I have not had to watch, as his face seems to elongate and turn the most morbid whitish grey that I never want to see again. With all he has to process and endure this is cruel for him to have, each time. L I’d drive, I really would but I am always leaving behind things of equal importance and must get back <3 Life.
Our questions this time for Dr.Standard fill an entire clipboard and I loathe the wait until our appointment… But, I am really trying to keep my faith. We have some amazing people in our life that won’t allow me to give up hope and encourage me constantly to keep my armor on, my head up and my fear to a minimum…Jonnie Sue,Allison L, Susan P, Janie C, Jeannie M, Vonette, Kelly L. Shelley L. Nancy G, Shelia, Michael, Lantz and many others. God knows Donavan and his pain. I have to rely on God, to run this show because my son is never honest with us about how much he hurts. That’s been a habit for years!! I have my ways of knowing and I can tell in a heartbeat, but he will try and take it to his grave. I believe he is this way for many many reasons…For one, he has been chastised MERCILESSLY by his peers, extended family members and many doctors for almost 8 long years. Since we have begun seeing doctor Standard he does not have to put up with unbearable pain anymore and that is a blessing!!! You would be mightily surprised at the doctors, nurses and physical therapists that have balked at Donavan and minimized his suffering to such a point that he dare’s not hardly speak of it any longer. He still denies when he is crumbling and sore. His ulcers are currently inactive, thank God but the reminder that they are there still just waiting to rear their ugly head, is apparent in his digestive difficulties and ruthless acid reflux. Donavan has consumed so much Naproxen, prior to being treated by Dr.Standard, that it ate a hole in his stomach and given him irritable bowel syndrome. NO ONE….. ever told me that this would happen.NO ONE…..ever told us that Naproxen impedes healthy bone growth!!!!!! L My boy hurt, so I gave him what the doctors told me to give him. Now he can never again take another anti-inflammatory in his life and has a plethora of foods he cannot consume or else he pays for it dearly.
We will arrive for the appointment this month and he will stare his surgeon in the face and say “I’m fine”. Then I will open my journal and report the 31 late night baths at 3:30 am, the countless mornings I have rubbed his leg and foot at 4am so that he can bend and walk and get to the school bus on time.. all the meds he has had to bow to. All the times I have emptied out Tylenol’s from his pants pockets while laundering, because he never goes anywhere without them, needed or not. Yes, this surgery rescued him from immobility and the unrelenting bone on bone pain; but his general pain is still very much present, especially when behaving as an actual teenager when attempting to walk longer distances, playing ball, riding his bike or the occasional run. Thank God, it is not debilitating every day.
**We must attack this issue of his LLD (leg length discrepancy) and matters will be put to rest until his hip replacement. I will do my best to try and allow him the ‘personal space’ of trying to continue making others believe he is just fine, but while I must still hound and nag him to keep up his exercises or else his muscles and tendons become short and so tight again, giving his limp the upper hand. The yoga was a no go for him. A child that has suffered Perthes for as many years as Donavan has, cannot even fathom the idea of breathe and release. It is almost impossible. But he tried, and for that I am so very proud him!! Thank you Shelley C. Lowther for the love!!!!!
Donavan's birthday is November 22nd and he will be 15. He is kicking butt, in high school !!! He is a Latin fanatic and acing it!! Math has improved amazingly and his advanced writing class is actually enjoyable to him. I am so thankful our son does not struggle scholastically. As for physical education, he yearns to run with the other boys!! Donavan wants to be thrown the ball and chased, tripped and captured. Please pray for him to have all this next semester. I will do anything, go anywhere, and ask anything from anyone, for my son. Because he deserves it. He never asks for anything ( but for me to stop nagging him about his health) and I am working on that too! C:
9:48am
