Saturday, April 30, 2011

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 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 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:

Friday, April 29, 2011

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:
John, Meg, Donavan and Lilah

Wednesday, April 27, 2011

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:

Monday, April 25, 2011

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:

Saturday, April 23, 2011

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:

Wednesday, April 20, 2011

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:

Tuesday, April 19, 2011

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 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:

Monday, April 18, 2011

18 April 2011, Not my fight

12:45am/ I write tonight happily, lighthearted and hopeful. Today was a really nice day, void of anxiety and stress. We were blessed with a sturdy and amazing wheelchair ramp, a gift from our church family at Saint Helena's Episcopal. No more worrying about this anymore. Feels so good. Shelia, Cristina and Shelby took Lilah in a pinch with hardly any notice, so that John could leave early for school for some overdue time in the library. Thank you Saunders women! Nikki notified me of a great gift she orchestrated for Donavans therapy in Beaufort! PTL. Donavan and I completed his pt together today twice, morning and afternoon. Starting in the morning, we have a very descriptive designed exercise program that takes us about 2 hours to complete each time. Get Donavan from CPM (continuous passive movement ) machine to his brace, then from bed to walker for a short stroll around HP for gait strengthening ( I always try to get him to go further each time) but he grows very dizzy from being in the bed so much. Then back to our room for the 13 stretches and exercises. We wrap up with 10 minutes of TENNS and then back into his brace for our 4 hour on 4 hour off schedule.. He did so well today. No griping at me, no whining and full concentration! He knows these things are molding his new hip. Tomorrow we have pt at the hospital at 3pm for 2 hours. I plan on starting in on all my questions early so that by the end of this week I am fully armed with the knowledge I require to help Donavan feel secure enough with just me when we leave Baltimore, until he is settled in with a therapist. We long to be back home together as a family again.. I miss my husband desperately, my new daughter and my mother in law to bits! Carl Joye has begun a project of recruiting people to send Donavan get well cards, so that when he returns home next week he will have such a warm welcoming .. These, all things that melt my heart. Those, that are reaching out to us during this journey are really making a difference in my family, and I need for them to know this! I lay awake many nights lately, trying to figure out how I can thank to them the huge gratitude that lives in my heart for all their concern, love and support. I think the way to do that is to keep on pressing forward and enabling Donavan to succeed! I have felt such love everywhere around me lately, that I can't help but be totally victorious in this battle for my boy to reclaim some normalcy for his life.

I was reading this passage tonight, right before beginning my blog and God has placed it on my heart to share it now.
"Fear not, stand firm, and see the salvation of the Lord, wich He will work for you this day... The Lord will fight for you, and you have only to be silent." Ex. 14:13-14
Thank you Jesus for my life, the goods and bads, the crippling and the freedom. I am yours and so is my family and we serve you. Goodnight C:

Sunday, April 17, 2011

16 & 17 April, Topsy-Turvy Tidbits

12:13am.. I did not blog our day Sunday because it was horrid, Donavan could not hold down any food..stayed so sick to his stomach because he always suffers this horrendous post anesthesia constipation..yep, I said it. I thought maybe just maybe this time around we would get away with it but no deal. Almost 2 weeks without a bm and anyone would certainly be miserable. I had great difficulty finding support from on call staff at the hospital as I tried remedy after remedy, praying it would not lead to surgery for impaction! To sum it up, thankfully after a quick trip to the ER, then 2 trips to a local Walgreens, about 5:30pm Donavan collapsed into a well deserved nap that he used to directly transition into bedtime early that night... On top of everything else that's going on, that was just too much. So very glad its over.

     Currently I am up way too late due to my own stubbornness because I have a video (no not the one up top) of Donavan's very first walking trip(with his walker) at physical therapy from Friday and cannot seem to be able to get it successfully uploaded for the very life of me! Its driving me mad. I want so badly for it to be seen because although he struggles so hard, it is a fabulous comparison to the new video we took today (above). I will figure it out..and even if you are as delighted with the video above as we are, please I ask you to see the other just as soon as I get it up. It will amaze you. Donavan worked with "Moshe" the physical therapist that's done just wonders for my son here at the hospital. Donavan has developed such a wonderful re pore with him and its such a shame we can't take him back to South Carolina with us. Moshe developed a wonder and exact physical therapy program for Donavan that he typed up and made sure it was  super clear for us to take with back home. It is only the first in a 4 phase plan for him to complete all he must to be back on his feet, full speed ahead hopefully 9 to 12 months from now. Mild stretching exercises and TENNS unit twice a day now for 6 weeks, then Hydrotherapy for 6 weeks (to strengthen and begin to tone, he actually should be swimming as much as I can possibly get him into the pool at the YMCA) then Donavan should reach partial weight bearing and can begin a light strengthening routine for another 2 months to enable him to go full weight bearing by 6 months..then the real work begins! From that moment on its going to be rigorous work to get his left hip, pelvic and quad muscles up to par...High school will start for him before this is achieved. We pray it won't become too big an issue. About the last 6 years of Donavans school life has been interrupted by physical therapy to help him stay afloat physically. High schools going to be hard enough, let alone having to be absent for pt, hope we can do it. Donavan will be in ROTC, for both semesters and I know he will be hard on himself to do very well.

     Today has been so satisfying, I think I speak for both of us when I say that today has been as fulfilling as it could be.Had an awesome day visiting with all the other mothers here at HP, I think we just automatically become so close, due to our circumstances. I thank God for the companionship and support because there is nothing like it! We started well rested, Donavan had his first shower in 2 weeks ( YaY) he handled it so well, was not dizzy at all thank goodness. Went straight onto stretching and TENN'S exercises and then as you have seen above, a mozy down to the HP kitchen and back with all smiles and dazzling pride. I do not think that I could be more proud than I was today. Donavan's wheelchair should be here on Wednesday (we are using a loaner) and we have 3 more physical therapy sessions before leaving Baltimore..Tuesday, Wednesday and Friday ! Then hopefully the weekend I can convince Donavan to go and see a very dear friend of mine here, Barb Fuller. She is not well right now but I know she will be better soon!

     Mom, John and Lilah had a lazy Sunday of homework, chores and worship..I miss them so incredibly MUCH! 7 more days and a wake up until Donavan and I are tootling down 95 S on our way back home ! See you all tomorrow, Goodnight C:

Friday, April 15, 2011

14 & 15 April 2011, from dark to light

12:25am/ My last two days have been spent helping Donavan transition between need all to only needing some. When I say all, I mean all his meds, all the doctors, all the therapists, all the attention, all the room, all the prayers, all the listeners, all the space, all the kindness, all the equipment, all the consoling, all the patience, all the slack, all the hugs, all the help, all the world has had to help him coast, ever so slightly from the drastic he has been to now a slightly ore mild presence. Its been so UP and then DOWN. Bless him, no one can tell me "boys aren't as emotional as girls" ever again. They can be too! Donavan had a melt down last night that I will not soon forget because it broke my heart... He sobbed and sobbed and sobbed about so many different things that I could not keep up! I was frantic, because it was midnight and he was so loud. We are in the HP house yes, but it is still a hotel and we have families to the left and right of us.He was yelling and then crying and both together he vented what seemed like a lifetime of frustrations.... Then it was over and he slept a sleep of heavy peaceful dreams. I was still frantic replaying every single thing he said over and over again in my head analyzing like a mother does. I don't know when I got to sleep.

     Yesterday was Donavans first real day of work at physical therapy and it rocked him good. They issued us a TENNS unit to help Donavan to retrain the muscles in his left leg. So much was cut in the surgery that its going to take a ton of work from here on out. He understands this, but I believe he in a way wished it would just disappear and allow him to play it off, as he did when he was younger and a therapist would issue him exercises. Donavans been in physical therapy for years due to Perthes. When he was young, it was fun and avoidable because he had NO idea what was at stake. Not anymore. Here at Sinai they see so many children with as serious conditions as Donavans, and much more serious. I trust them with my son and we cling to these 6 therapy sessions we have been afforded before we will leave Baltimore to go home. They hopefully will enable me to get Donavan off to a solid start and arm him with the initial confidence he must have to see a light at the end of the tunnel. Yesterday he cussed and swore it was too painful and that nothing felt right and that he felt his hip sliding and burning... Today "Moshe" a very well loved and admired therapist here at Paley Institute of Advanced Orthopedics had my son up out of his wheelchair, walking with his walker, shifting his weight and making his way across a small bit of the floor! ! ! I couldn't believe my eyes. And the tears came big! I videoed it, but its 3 minutes long and I cannot seam to get it from my phone to here on my blog yet, but I will! I was amazed and so incredibly thankful...From what seemed the lowest possible, not holding down food and passing out, to walking with his walker! Praise be to God. I am feeling lighter as I write this. I am so proud to share this news and I have a more stable feeling in my heart about the progress Donavan is now making. I honestly felt that his left side had just been so surgically dissected that he'd never come back. I will be adding many more photos so you can see my boys pride and extremely hard and difficult work. I pray its only the very beginning and that the we are able to use the next 3 sessions left before we leave to help Donavan feel realistic hope. Nine days left in Baltimore, three more pt sessions until we get back to S.C. and Donavan can begin his very long way back to eventually walking on his own without the aid of wheelchairs, walkers, or crutches.Stretching PT for 4 weeks then Hydrotherapy for 4 weeks to coddle the muscles and increase flexibility with weightless resistance training and then the real therapy begins at 12 weeks ... Will take a minimum of 6 to 8 months and then another three to put the final touches in so that he has a regular routine to fall back on, if his limp gangs up on him again. Then next summer, limb lengthening of his left leg to even him out and leave behind him any scoliosis or further threats to his knees and spine. I am ready for this for my son, he deserves it. I pray he will fight for it -! I will hopefully be able to add the video tomorrow, its so heartwarming you will feel it too!  Goodnight C:

Wednesday, April 13, 2011

14 April 2011, One week anniversary!

     Today at 8:40pm was Donavan's  one week anniversary, of the marriage between him and his newly established blood supply in his left hip. I know he does not realize its actually been an entire week gone by. All his meds and pain anxiety, it just sops your brain.. I told him tonight before he fell asleep ( 15 minutes ago) to just try and think back to immediately after surgery last Wednesday.. He said "I don't want to ever think about that again". I then replied " See, you have come so far since then!" ....
     I could blog all day long, if I had a clone to cover my son :D  I have so many things I wish to share, vent and cover. Today was not taxing and I feel wildly tired for no reason. Maybe catching up still, from all the past days & nights spent wide awake with Donavan. All so very worth it to me. Every last nasty and dreadful detail to them. Even the crazy happenings, and believe me there have been some! They will all be in our book eventually. I have learned so much every surgery my son has. I learn more about the nature of pain and the affects it has on a persons entire being .. the tole it takes on innocence and the threat of it lingering overhead almost continuously, it can suffocate you and just as easy suffocate those around you. Always demanding control. I made a conscientious decision to cut every single bit of negativity out of my life and its surroundings today. Feels fantastic and I do believe I am wearing it quite well. Even Donavan noticed. Our children are so sensitive to us, I will never let another negative anything disrupt our stride. This new blood supply will be nurtured by God, Mommy and all of this worlds beauty and grace from here on out. Amen.

     Finally we will have a wheelchair ramp built next week, at home in S.C. ! Our very own church is handling it, Thank you Saint Helena's Episcopal... thank you so much. Last one John built on such short notice and with all half rotten wood scraps. We are so thankful for this one. It will be good and sturdy and will last the entire year I am sure.This was a major immediate need on our wish list!

     Tomorrow Donavan has physical therapy and I can hardly wait. I dread his anxiousness and pain but I revel in the work he has to accomplish because as one therapist says its "molding" his new hip! I have a new tatic to try tomorrow and it involves not just prayer, but some motivation Rocky Balboa would be proud of... Donavan talks constantly of how fit he longs to be. Not just to be able to run and jump carefree, but to be lean, cut and rock solid! I have been looking on craigslist all day and have found 3 or 4 possible gym sets he would adore. If I can put them within his grasp when we get home, in his room he will have a fitness sanctuary. At 14 most teenage boys are not consumed with being physically fit. You get that way when you have been almost solely confined to no running or playing for years on end..Donavan has a great fear of being chained to inactivity the rest of his life. I won't let that happen.

     Tomorrow night is the monthly online Perthes chat with Doc Standard. It begins at 8pm and everyone who is seeking for their children to see doc S, and who is currently under his care, participate in these chats. You sign on with your questions ready to go for when your turn comes and the doctor answers each of your inquiries fully. He does it from his home, with his family around him and after working all day with us.. still he gives. God bless Shawn Standard, his children and the saint he must be married to...I can't wait to meet her and thank her for sharing so much of her husband with my family. I have a few questions I need to ask. As it is now, I am unsure if we will actually be going home at the end of the month or not. Donavan may require some super reinforcement and another few weeks, in which case we will work it out.

     I have so many dear and amazing people in our lives that if I could just write a paragraph about each one it would not be enough.. Tomorrow when the reporter arrives for our interview I am going to only agree to chat if I can first make mention of some of these very awesome people who have shown a ton of special love to my poor kid. They deserve it and Donavan wants to be able to "repay" them, he calls it. I have about 50 thank you notes I brought with us on our trip to Baltimore and every time I get them out along with addresses, for Donavan to write them himself..the boys passes out asleep. Bless him, I am going to help. I ask your prayer for PROTECTION of Donavans new blood supply in his hip, and COURAGE for him to give it his all in PT tomorrow and every PT day after. The smile in this photo, albeit disguised in toothpaste... is GENUINE... and the first like it that I have seen in many days and I am so way happy to see it! His inner strength is being reborn and God has him on deck to bat ! Goodnight C:

Tuesday, April 12, 2011

12 April 2011, Esprit de PT

I thought I would add this photo of the smiley face on Donavan's left knee before it disappears.. Its the smiley doctor Standard drew on him right before surgery in the OR waiting exam room. All surgeons do this, they or their OR staff mark the ankle, leg or whichever thing they will be operating on... Doctor Standard is just a happy and creative mind so he draws a happy face. I wanted to capture it while its still smiling up at me as I am desperately trying to brace it and move it and manipulate it in and out of the bed,from walker to wheelchair and around everywhere..Tomorrow at 9:30 pm it will be one weeks time since Donavans surgery already. Its almost impossible for myself to believe that we were just released yesterday! We have gone through so much already.

     The second photo is of the current equipment we are working with... the CPM (continuous passive motion machine) is the contraption that you lay on the bed and Donavan must have his L leg up into every other 4 hours of the day. It gets strapped in and then lifts up and then extends out very slowly. When he is not in it, he is braced. The long blue dog collar looking thing is a leg lifter. I only have me to help him now and that's about a person short to do actually what I must safely and effectively, so they gave us the "lifter", it scares Donavan horribly because he feels like his leg is going to fall when he is lifting his foot with it. He lifts and I try to pry the CPM (which weighs about 12-15 lbs) underneath his L leg. Walker to use to go from bed to wheelchair, wheelchair to get anywhere:) Today first thing in the morning Donavan was brighter and trying so hard to psych himself up for the physical therapy eval..he said "Mum you don't have to tell them to back off, I am going to do whatever they need". He meant it with all his heart, before we got there:( It was gutting to see him whimper and not really be able to say much at all because he was there for a reason. They needed to measure every aspect of his ROM (range of motion). This gives us a starting point to be able to map his progress at a later date when we return to S.C. to continue PT. Also his range of motion can tell us if the new blood supply that was created in his hip is thriving or not... Donavan sat in his chair while the girl introduced herself and proceeded to tell him he would need to be up upon the large exam table in front of us. He said " Are you serious!" We were there an hour and 10 mins and in that time I wanted to cry myself, for him over and over.. When finished he said to me, "Just take me back to the HP and put me to sleep mum, please." :( We are past the point of him being almost incapacitated with all the pain meds 24/7..not its actual scheduled pain management and that's very very difficult. Especially when your striving for improvement and strengthening. The anxiety med I am finding is really making a difference in his angst.. Donavan is so young to feel so helpless and powerless and hopeless! I have included this photo of him after PT was finished today. It says it all. I love this manchild more than life and will push him only for his own good! But it kills me over and over. Goodnight C: