18 October 2011, Harvest Season for us too

Via Wiki: Harvest is the process of gathering mature crops from the fields. Reaping is the cutting of grain or pulse for harvest, typically using a scythe, sickle, or reaper.^[1] The harvest marks the end of the growing season, or the growing cycle for a particular crop, and this is the focus of seasonal celebrations of many religions. On smaller farms with minimal mechanization, harvesting is the most labor-intensive activity of the growing season. On large, mechanized farms, harvesting utilizes the most expensive and sophisticated farm machinery, like the combine harvester. Harvesting in general usage includes an immediate post-harvest handling, all of the actions taken immediately after removing the crop—cooling, sorting, cleaning, packing
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

 

5 October 2011, A Mere Wee Hiccup

     10:39am, Wednesday, Wednesday you bring me a little more peace. We had as stated in today's blog title, a mere wee hiccup with Donavan's next post appt in Baltimore, Md. Due to a very irresponsible and reckless act of an administrative member in the chain of operations at the Naval Hospital here, Donavan's travel documents never made it to their destination for approval of our October 10 appointment with Dr, Standard. Of course I fond this out Monday, with only 6 days until John and Donavan were supposed to travel... John had taken off (2 full days) of work, school and clinical's for this appt. I was to begin my new job and all was well until Monday :( All a wash and a very hard & expensive pill to swallow. We are not even remotely financially comfortable, I know you know what I mean. But we thanked God for everything he continues to provide and we got back upon that saddle and rescheduled for 31 Oct 2011! This time I will be taking Dun and again leaving my husband and 1 yr old behind, also leaving behind the fantastic new job I lost. What can you do!?? Life. We start again and with more determination and power than before, not ever looking back!

     Yesterday Dun's physical therapist told us that depending on what the report is from Dr.Standard when we go, that she wants Donavan to begin independent work outs. That is lone physical therapy, at 14... after a major hip reconstruction and several failed surgery's before it. I shuttered, as I listened to her explain that she felt at his age that she didn't feel he needed the supervised guidance anymore of actual therapy sessions. Gulp. I am not even going to begin to digest that until doc has his exam and xrays to refer to during Donavan's appt. With a pediatric disease like this, PT never ends.. .. when it does you are left with a large group of very important coddled muscles that peter out and then set off to completely discourage the child. I understand that at many levels Donavan should know how to work out independently, say during laps at the Y and such. But he is just too young and without the foresight and insight to be left to his own devices ( I feel) a mothers point of view is all. One of my biggest fears is that Donavan may be developing an impingement upon his newly growing L femoral head and that he will have to have surgery again in Baltimore for what the doc likes to call a "bumpectomy". Shorter surgery, but removal and again more reshaping.. more surgery. Ugh, he barely has much holding himself together now, let alone another extreme make-over. Pray please, that he has no deformity so far or in the future. <3

      We are simply going to just breathe, pray and love until that appt of ours up in Baltimore on Halloween. C :





    
    

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 :

6 May 2011, update

Because we have not blogged in a couple days, I am just updating quickly. Donavan has multiple pressure sores and they are breaking him down..physically and emotionally. He can't move without pain :( Sleeps bad, wake time is bad. PT is murder even with pain meds on board. We feel powerless and will be aggressively treating him this weekend non stop, to try and give him some relief! Emotionally, Donavan is just a wreck ....and its just snuck up on him after he has tried and tried to stave it off for over a week. My hearts breaking for him. Hope and pray we get this under control this weekend!

3 May, 2011- Money can't buy everything.. ..

11:07pm/ Taking a break for a more lighthearted shorter blog tonight. As I spent this evening with my family I was swamped with the overwhelming feeling of contentment and love, even in the face of adversity (as usual) usual daily/nightly difficulties.. Duns pain, exercises, chores.. disappointments..deadlines.....the same old same old.. I felt a glow tonight.

Money cannot buy the feeling Donavan  got today by going down our new wheelchair ramp (ALONE), without me nagging him half to death to be more careful.

Money couldn't buy the freedom he felt today, rolling down the street alone (me behind him (:  ) in front of our home, after being couped up the past 4 and a half months... out of school, at home in bed in pain 24/7...hospitalized for major surgery in Baltimore for a month and tethered to the bed now in brace and CPM... until further notice.

Money can't buy the look on your 7 month old sisters face, while she sits in your lap on the wheelchair, while Mom rolls you quickly over the bumps in the yard on a sunny day.

Money, .25 cents that is, does buy Donavan happiness of a stars and stripes cola, everyday we are at the hospital right before PT. The energy and boost it gives him to work with his pain meds, through out the strenuous and painful workout is priceless.

Money cannot buy the PEACE he feels wrapped in his favorite red plaid woolen blanket, on the table in clinic after PT, hooked up to NMES for pain control and relaxation after a hard session.

Money can't buy the feeling Donavan has opening get well cards, from strangers and some friends, wishing him well and great future happiness !

Money can't buy the generosity of people, to share their love and blessings with our son!!!!!! We will never be able to fully thank each and everyone of the beautiful people who have taken their time to write my boy ! The best I can promise is that I will be with Donavan every moment, every single second, step, breath...on his way back in recovery. No matter what. Even when he hates me for pushing him (as he does, because that's what we do in life...we are hardest on the ones we know won't abandon us when the tough gets going and grabs us up) Goodnight C:

30 April 2011, Standard Practice

11:31pm/ I am sort of picking up where I left off last posting, except I am not going to relive all of it. So tonight I am going to briefly use the pics I have posted to say what we want said.. Last pt session was all new exercises and they were excruciating to Donavan. Lilah is always on my hip when we go and now I am rethinking that very seriously...she reacted when Donavan began to moan and then cry, see her eyes in this photo above? Those were of shock and fear, she was so uncomfortable she went straight to a half frozen bottle we had with us not yet thawed because I do not nurse during these times. She was comforted, so I was relieved. Donavan thought that the old stretches would be the only thing we would ever do.. his exercises will change often, according to what Dr.Standard wants and its going to get very hard from here on out. When you have had every major muscle group cut from the top of your knee to your lower abdominals...it takes a lot of work to come back..and we will !

     Donavan was so tired and drained when he finished that I would have just liked to take him directly hoe, but we had to first refill at the new new pharmacy at the hospital, take a ticket..wait and then wait some more. Lilah served as humorous entertainment for brother as we waited. Donavan insisted on holding her although his weakness scared me. I know she inspires him with her endless smiling...! We are so thankful for our physical therapy and pharmacy, no matter the wait because they are wonderful, wonderful people ! Before we scooted out we ran to ortho to pick up a pair of crutches. Doc Standard says to have them on hand so that  Donavan keeps in mind that he cannot rely on his walker too long.. About another 4 weeks and he will be crutches for very short distances and always wheelchair for longer ones for the next 6 months easily.

     Then back at HOME.. .. lunch if I can force him to have some or a juice and he hits the bed for a couple hour nap..with Lorna. Lorna loves this boy like he was her own. She adores both the children...we couldn't be more blessed with a more loving, loyal and gentle dog in our lives ! Thank you Lord..!

     Dr.Standard rang John and I yesterday and we spoke for a good long while. I was multi-tasking as usual and I did not expect his call whatsoever... I was delighted to hear his voice. "Meg, I am out of the OR today, how is Donavan?"  ...... This our sons SURGEON..calling our home, to check upon him!!! Have you ever heard such a thing?? Patiently explaining to me what to explain to John when he came home, on the changes we should be expecting and the structure he wants implemented. Waiting patiently again for ALL my questions.... and I mean all of them. I had so many. Even with Allison, Docs PA..she is an angel and always gets back. But just as soon as she does, we have 10 more to ask. I know God gave this amazing man to us, to help restore my boy to a "child" the best humanly possible. In so many ways Donavan is like a 70 yr old man... Chronic pain for 7 and a half years of your life ages you and sky rockets you into early maturity :( Doctor Standard wants to give Donavan back to Donavan, zest for life..HIS LIFE!
John and I are so thankful for this doctor and his amazing team! There is no failing with them, no QUITTING, no excuses..no laziness, no lackluster anything. Just Gods intended BEST ! I love Doctor Standard and his wife for sharing him  with all our children and us, so often ! I pray every blessing upon him and his family, and all the staff that surrounds doctor Standard in his never ending pursuit to change the lives of these children assaulted so viciously by Perthes disease. Goodnight C:

29 April 2011, postpone for tomorrow

12:06am/ planned on being capable of blogging now, but today at physical therapy for Donavan was a doozy, and he just can't seem to settle this evening and even with his meds onboard he is having a great deal of painful spasaming. Can't blog and care for and comfort my boy, so tomorrow it is. This photograph was taken after his session of all new stretches today, it was completely unbearable to him at times. Heartbreaking to a mother... heartbreaking is an understatement. We were told all these stretches are "molding" his new hip, so basically as harsh as it sounds, no pain is no gain. Will pick up tomorrow where we are leaving off tonight. Donavan also has a fever, that we are quite sure is unrelated to his surgery but does not help matters. I thank God, for the Leuitenant we have conducting Donavans physical therapy..she is a mother herself and understands so much. See you tomorrow. We have more photo's to add and further description of Donavans new structured therapy. Goodnight C:
Love,
John, Meg, Donavan and Lilah

27 April, 2011 Our pride in Donavan and his immense will power and spirit !

1:27am..up with John while we complete some homework towards finals..again. Almost over, YAY. Today my friends, has been a very awesome and exciting day (in my opinion). The photo above of the train tracks headed into the light, captured my attention today because that is how we feel Donavan and our family are headed..full steam ahead, and into the light. The light, the righteous inspiration, all from our Lord Jesus Christ. Our family we have surrounding us of other fellow Christian's and their families... even unbelievers (on their way) and other, believers......lifting up our little family with love and rock solid support. John and I most definitely feel the Divine guidance now. It's not a plainly seen path laid out for us, but its clearly marked so far ; )

     The photo of our herb garden (compliments of Donavan, while he was still able bodied before surgery) he planted each and everyone on our back porch. Just look at each pot..Dill, rosemary, basil, fennel, parsley, cilantro, mint and thyme... MMMmmmm they are so fragrant! An example of the hope Donavan had pre-surgery...of growing just like these plants. <3

     Also please see the Wren nest, nicely seated into our front door basket full of 4 wee Wren babies and their Momma.. this has been a miracle of nature.. This nest has weathered many slammings of the door and harsh rains and winds..still the mother never abandoned her children and their home on our front door. Look very closely and you can see their tiny beaks ( heart bursting with joy, just thinking of it ) God bless these babies ! Have you ever heard of the stories of how mommy birds abandon their nests, with their babies inside when they become distracted or disinterested? Or when they feel the nest has been tainted by human touch or otherwise? So heartbreaking. I wonder if all the daddy's take over full time and see to it that the babies are well cared for?? Maybe then the mommies come back to the nest and try taking it back over and demand their title back? I don't think they deserve it. Maybe then she refuses to let daddy bird see or connect with the baby birds anymore either, because she feels threatened? What a travesty if this does take place, babies NEED BOTH their parents, in their lives....PSG.

     Donavan Truth has done an amazing job at his daily exercises and stretches... I feared so much a few days ago he was about to quit because his lack of sleep because of pain was really killing his vision and enthusiasm... Not a chance ! He is back and he is standing firm in the face of fear with a vengeance, and great determined goals to beat the band !  Even today as we were so hurried to wake and get out the door for our early morning appt at the hospital, Donavan did not receive his entire dose of combination pain meds ( I dropped that ball, because he begged to sleep longer) but still he pressed on with the Lieutenant with very few tears and more gumption than we have seen in a longtime ! AMEN, thank you Lord, thank you for this teenager in our lives that even today is showing us up, in the fortitude department of life under pressure. Donavan is making his way ! He is trail blazing his own path and realizing it as he is doing it. The look today when he finished, was priceless and I kept it personal to my heart and in my memory instead of sharing it by way of camera with you, because some of these moments are to stay sacred with a mother. Between only her and God ! I can't wait for Friday and our next session! See the photos of Lilah sitting patiently in brothers chair, as I did Donavan's exercises with him at home yesterday ( Thank the Lord I could be home!) 

   John and I have some prayer requests to enlist your help with if you do not mind ?  :)
That we are able to enjoy seeing one another more often between work and school. That God direct us more clearly as to the path he wants us to choose while deciding where we are moving to. Its a huge move and we need steadfast prayer! The opportunities are amazing and just waiting for us ! Please pray for our family protection from all evil spirited events and encounters. That God bind all of it and deliver us safely where he wants us. That God hold us as tightly in his arms as he has over the past many months that we struggle to make the best decisions for ourselves and our beautiful family. Prayer for my lovely mother in law that she succeeds in her goals and enjoys a wonderful summer with us and my sister and brother in law. Prayer that Doctor Standard is able to determine whats best for Donavan along the lines of the next treatment he will begin very soon! Blessings for every single person that's been reaching out to us and keeping our spirits up and enabling us to be 2 places at once (literally) lol. We LOVE them all !!!! Goodnight C:

25 April 2011, Explanation

I have not blogged since the night after we arrived home because its been a busy tornado of so many things going on here. I have been furiously chipping away at our thank you notes, and that's made me feel a little bit better. I refuse to write a form letter and mass copy it to stuff in every envelope...period. Everyone who has sent Donavan a note, card or donation did it in their personal time, with their own personal touch. John and I want to reach back out to everyone that have reached out to us! I have 2 video's that I want so badly to post and simply cannot get them edited :( I have tons to report and will do so happily, just as soon as we tighten up our loose ends around the Holt household (: Its still a very rigorous schedule with Donavan and his stretches/exercises and CPM...meds, meals and moving....Nights...oh the nights are so rough. They rival what its like having a newborn baby in the house, because its pain we are dealing with not a newborns  hunger. Days are at warp speed, especially when you throw Ms.Lilah into the mix, she is a MOVER and a SHAKER now !!!!! I miss writing and sharing our ups and promise to be back to it here by the end of the week! THANK YOU, for all the comments and emails that you have been sending John and I .... knowing that we are so supported, honestly makes a huge difference to us. Its a warm hug, when our eyes cross over your compliments, suggestions and compassion ! Don't forget about us, we are making our way back! The photograph above is of Easter day, with Johns mum Jonnie Sue... she is like my best friend and I thank God for her. We BBQ'd lol and attended evening service. It was a blessed day we are very thankful for. See you soon, Goodnight C:

23 April 2011, Early Homecoming !

11:16 pm/ I ask please that you come back and read all about our homecoming tomorrow, or after your Easter supper on Monday... we ended up coming home early due to an unexpected family emergency (which is now well underhand, PTL) and we have so much to share! Its just that my eyeballs are about to fall out right now. Getting Lilah down was a trial (albeit a labor of pure love) and Donavan just had his night time meds and we have him all hooked up to CPM and comfy in bed for hopefully the entire night through, and I am just...... tuckered! We have video and many pictures to share, so much JOY and news to share also. See you soon hopefully ! Goodnight C:

21 April 2011, Anticipation

12:56am/ Again I am very at peace about the day Donavan had. He really applied himself at physical therapy. It was at 3pm today so we talked about it all day long.. We have been told now, that during his Monday appt before we are given the okay to go ahead home, that only his xray will be reviewed to make for sure the hardware holding his hip together is in place and not broken up in anyway. We have been thinking that the doctors will be looking at his newly created blood supply, to make for sure that its still viable. Not so, this can not be established until 2 to 3 months from now.... I have been so concentrated on this new blood supply that I have been ready to just jump out of my skin to know that its okay and that every things going as planned. Doctor Standards PA, Allison explained to us that it just cannot be confirmed so early. So now, we xray Monday to ensure hip position and placement of the hardware. I will be very glad to know these things are well too, but the new blood supply is my primary interest, for obvious reasons. Donavan says that he just can't stand not knowing. I don't blame him! He fears going through all this and then having his heart broken. We do too, but its worth the try! If we had to do this all over again, I would be on board for it. I don't think he would though.

     I got good word yesterday that Donavans PT will be handled by a very capable and wonderful woman at the hospital when we return. She wants to make for sure that Donavan is handled with extreme care the very first weeks, before being turned over to the pt techs. Dislocation surgeries are not common and not many sports medicine people or therapists are trained at how to handle it... Very delicately. In the first 6 weeks a mere hasty pivot or bending motion, or crossing of the legs can re-dislocate the hip. YES, this petrifies me. Donavan feels extra vulnerable as well..he is older now and understands the ramifications of his actions. Non weight bearing sounds easy, but it is not at all... naturally one wants to put down even a toe to help balance themselves..this is not allowed.

     Donavan is again chattering about fitness and his angst is growing tremendously about the possible weight gain that may happen while he is so inactive. He cannot wait to be released for hydrotherapy! At least he will be doing something he says. As you see above, his computer and music is all he has to rely on. I want to change that and foster a love for swimming in him.. South Carolina's summer are unforgiving. To simply sit in the house and only sit, makes for restlessness and discontent...emotionally and physically. PT will help to fill some of the time, but nothing beats free swim time.

     I begged Donavan all day long, to allow me to take him out for the first time in 2 weeks... Today he was post op 2 weeks and I finally convinced him to venture out for ice cream... he was petrified of bumping his leg, jarring his hip.. it was so tense that he did not really enjoy himself, instead he nagged me to go back to our room. He also is very self conscience about being seen in his chair or walker. That's gonna last 6 months and then crutches. Praying on that for him. Tomorrow is our last pt session and we are alone Friday and the weekend... biding our time until we see doc Herzenberg Monday afternoon. Maybe this weekend I will be able to get him onto the super shuttle and go down to the Ronald McDonald house to visit our old hospital room buddy Paul N. Its Easter weekend, so hard to be alone without family. See you tomorrow its 1:20am and Donavan's still wide awake ( always the way his schedule ends up after surgeries, he gets used to being so tired out during the day from pt and meds) that he naps heavily in the day and can barely snooze at night. Yep, its real hard on me:(
Goodnight C:

19 April 2011, Our Blessings (-:

10:03pm/ It seems that it rains everday that we have pt at the hospital. I went and purchased rain gear to be better prepared because it is really difficult getting up that hill soaken, pulling out wet blankets out of the wheelchair spokes. Today Donavan had a trial at pt with his tolerance to increase range of motion. Altough it is only 13 days post op, it is extremley important to stretch out these muscle groups. If you do not, than stiffness sets in and does its best to discourage every movement! The immediate goals are average and somewhat easy, definatley obtainable ( easy for me to say I guess, but this is what the therapists say). I am a nag, I nag Donavan quite constantly about his own welfare. I remind him evryday that if he wants to be well, he must work for it. If he wants to be well and strong, he must really work hard for it! Like the TENNS unit, you can lie there and it will twitch and stimulate the muscle, but unless your flexing while it happens..you are not retraining any muscle. Donavan needs to focus and be there in mind and body :) So much to expect but its just what needs to be! We have only two more sessions...I write down everything I can think of all day long to fire away at the theripists while we are there. I still leave them with so many questions. I have to settle for not knowing everything, sigh lol. Today we took off Donavans bandages for the first time since surgery. WOAH, the incision is 5" longer than his prior incisions and I heard his breath quicken as we both first looked at it. Honestly, it is beautiful. We both remarked how nice a job Dr.Standard did sewing him up. So straight and smooth. Donavans past incisions were so jagged and bumpy. I am glad I have a boy, because the friends I have who's girls have scarring are very self conscience about them. I understand that but am so  thankful Donavan does not mind the scar. Its one less thing to worry about him, worrying about (:
The incision is very healthy, no redness or swelling. Praise the Lord! Praise the Lord we live in a country where my sons disease can be treated and treated well. I do not forget this, ever... Our wheelchair ramp is finished and it is the prettiest wheelchair ramp I have ever seen. Never did John and I expect such a decent, quality well made ramp and I just am so happy to ahve it. I imagine Lilah will be walking down it, if not running soon.... Maybe just riding on her brothers lap <3

     I have recieved an email from a professional adult in our town that suffered Perthes as a child. I was so very moved that they contacted me and I can't wait to talk with them. I have a very large network of "perthes family" on the internet and I try very hard to meet and keep up with adult perthes survivors. So many of them that I come into contact with, believed themselves alone. I try and document how they have gotten on in life and what treatments they use and how they cope. I know Donavan will have a hip replacement in his 20's, and will have a lifetime of arthritis to deal with and I want to know what works for others and whats out there for options. No matter what age he is, if I am still around I will help him try to cope. I am going to bed now, Donavans fast asleep next to me and this has not happened before so I am going to try and get some good sleep tonight! 5 days more days here in Baltimore and a wakeup until our check up with Dr.Herzenburg. Hopefully be given the okay to go home to S.C. on Tuesday the 25th, home.. .. to our family. Goodnight C: