March 30, 2011 ~~~ 2 more days & a wakeup!!!

                It is 6:23pm and John just took Lilah to go and look at a wheelchair we may use, so that I can finish preparing supper...You see I am not finishing :) I wanted to get an earlier start today, so that I may finish before the wee morning hours that I have been keeping. Its taking a tole on me physically now so I am revamping my strategy!

      9:23pm now..had some unexpected obstacles...with only 2 more days and a wake up, I am double timing everything now..packing Donavan, packing myself, packing Lilah's diaper bags to go 4 different ways to 4 different sitters.. packing meds and equipment..can't take very much at all in way of creature comforts for Donavan.. not enough room:( Sure hope I can make up for it once we get there.3 things I personally will not go without- my bible, journal and travel photo album... wait, and my Rolaids :) Our household is all very nervous and sentimental right now... Johns being confirmed next week.. 2 months of classes in between work and both of us schooling..I will be missing this and it stinks but I bask in the glory that it is... BEING DONE <3 Amen.

     Sandy comes to pick up Lorna, Friday to bring her to her home for 3 wks.. so that John and mom do not have to contend with her and worry about her not getting out to potty and so forth. I have so very many little wants before I must leave.. I must choose whats most important now. I think I have it down to 17 little to do's...which is manageable. Tomorrow Julie Fowler is coming down from Mt.Pleasant to see us, she is such a neat lady..amazing mother and now my friend. I will cling to her because I am so incredibly thankful to have a Perthes mum close to me now... she is a remarkable one too, because she has 2 children with perthes disease which is just unheard of! She is bringing with her a brace of her daughters, to show Donavan what it looks like, because he will wear the same one. I am excited to visit with her, another mother who knows exactly what I am and will be going through for the next year and beyond... This summer we have sacrificed for this reconstructive surgery. Donavan's next summer will be sacrificed to leg lengthening. And then I will rest. Really I will. After all  this, his hip will be restructured and strengthened, then his leg length discrepancy will be dealt with, eliminating his horrible limp and back and knee troubles....his body will be able to address stamina...until his first hip replacement. Donavan will most likely have his very first hip replacement in his early 20's..and in case you do not know an average hip replacement lasts between 7&10 years, and you can have 3 a lifetime. ( I am praying very hard.... that technology advances in the next 5 yrs and there will be something amazing available to Donavan then. Okay maybe after his first hip replacement I will rest ;)

     The naval hospital was just as cold and disheartening today as it was yesterday. I will be glad to leave it for this next entire month..Because come July, we will be there most everyday for physical therapy. Donavan works so very well with their therapists, he feels very comfortable and very much cared about up there. I rest in this. Above I posted a picture of Donavan right before the onset of Perthes disease, so that you can see him in all his adorableness and athleticism. He longs to be active like that again. The single most heartbreaking........ statement my son has made to me is " I will never know what its like to run my fastest again." Donavan has battled suicidal feelings a few times and even during those moments he has said nothing to me that has touched me more. Goodnight C:
9:54pm









29 March 2011, We had a ball !

11:07 pm, I am getting to bed before midnight tonight...a wonderful close, to an absolute blessed.... evening with the men in my life. Thank you God, you have renewed my spirit this evening and given me a new perspective on "things". I was growing negative and somewhat disgruntled...that's just not... me!If you are reading along as you did last night, you already know this. So many readers last night.... negativity always draws a crowd, that's too bad. I would truly like to believe that others would wish us nothing but well and..... behave kindly. I personally rejoice in others triumphs and I like being happy. I love making others happy.
     

      We rushed out of the house leaving behind my lovely and supportive mother in law, she came to our home to love on Lilah so that we could go and really give our undivided attention to Donavan. We did and the smiles that graced Donavan's face, had not been seen in many.. many... months, that I had to keep fighting back from tearing up in just pure joy! A perfect evening together to celebrate our last family outing before Donavan and I leave for Baltimore. Church is our regular outing, although loved and revered, it is not an exclusive family event... that compares with our togetherness tonight.There were so many little children there, all laughing and running the court with their balls. While looking at them, I could see little Donavan, from age two to eight sprinting around everywhere at maximum speed underfoot. I remember how skilled he was at soccer and baseball, anything athletic really he was just a natural born athlete. I could not keep Donavan inside as a young boy because he loved to run and stay on his feet from the moment he woke until bath time and bed. Little Donavan was boundless with enthusiasm for life. It kept me moving at a rate always conducive to feeling so productive and happy! And then Perthes arrived into our lives and that all came to a dead stop,  he could barely even raise himself up from his bed . My friend Sandi Foote, who's daughter suffered Perthes, often says to people  " What would you do if your children could not have run and jump and played?" I am so.. very.. thankful... that although Perthes set in so young in Donavan's childhood, that I at least got the very early years to witness those giddy proud, mother moments of seeing your child bolt from the school bus or ball field into your arms all sweaty and wreaking of love. Goodnight C:  11:40pm

28 April 2011, Haters abound:(

This was Donavan's father, deceased Marine, Donavan M Halpin (died July 1997) Donavan was 8 months old. No, there was no SGLI to be had for us, for little Donavan or his life, because his father was still legally married to another woman and we were not entitled. I fought that year and all the next to establish little Donavans dependancy with headqtrs Marine Corps and then again in 2009 when we arrived in S.C. from Texas. So that should clear up hate mail #1 that I recieved today anonymously. Thank you.
    
     I wish so much that I could just blog tonight about Donavan and our family, the sharp edge that my son is on and how he is dealing with his prospects of being again confined to a wheelchair/walker and crutches again for 7 or so months... and try and homeschool the rest of 8th grade to continue on with high school...the fact that we can't find his homebound instructor and he just stopped showing up...that he left with a bunch of accomplished work of my sons and that he has not turned it in yet! Beaufort County School district has ditched us. It took almost 3 months to even secure a qualified homebound instructor..we have had so many troubles. Please if you are reading this right now, pray that Donavan does not get held back in 8th grade because he has no homebound instructor and that his work be turned in and that we get another fine instructor that will be patient and wonderful with Donavan the rest of the year...because he will be going through SO much, not just trying to pass the 8th grade. Donavans test scores are excellent, we wish he just CLEPP out of the 8th grade :( I will tackle Beaufort County School District at the state level just as soon as I get home !
*****ATTENTION NAVAL HOSPITAL REPRESENTATIVES:

     ***Please notice we have revised Donavans website, www.ahipfordonavan to reflect current information regarding his insurance, travel and other things...facts that our family wants clear. Updated immediate needs and wants.
We still have a very difficult and insecure year ahead of our family.. I ask mostly prayer right now for our mental well being as well as physical. For safety and guidance, that John and I be both empowered and armed with every resource available to keep our family afloat. I didn't realize putting my family out here would draw out such nastiness and unhappy people that thrive off others failures and heartbreaks...But the anonymous emails I have received tonight are downright hateful and inexcusable... Shameless and destructive. : (

     3 days and a wakeup...... until Donavan and I leave for Baltimore. I have got to give this worry to God before I make myself very sick. Hoping to confirm new flight arrangements and rent car travel home to Beaufort, from Baltimore, arrangements... tomorrow... with a very special and patient and kind woman in our corner. Tomorrow night, we take Donavan to see The Harlem Globe Trotters in Savannah...tickets we secured with our tax funds when it came in a month ago. (for those concerned) I am hoping it lights this kids heavy and dark heart right up!!!! We will take pictures for everyone <3
     ***John and I, would like to extend an invitation to most people that wish to donate to Donavan and his needs.. that they are welcome to review our financial information, both personal and Donavans fund, " a hip for Donavan" .... if requested.

     To all the wonderful and amazing people that have been contacting us with uplifting joy and advice, we love you, we thank you... and please don't be strangers ~!!! Goodnight C:
12:12am

27 March 2011, Donavan's brisket of love

11:09 pm right now. Tonight Lilah went right down despite having a bunch of green beans right before bed... Donavan insisted I feed her them because she was stalking him with her eyes while he was devouring grapes, and he knew he could not give her grapes at 6 months old, so he commenced to thawing and feeding her green bean mash  at 7:40pm. I did not say a single word. I delight in his interest in her and know that this next month spent away is going to be heartache, for the both of us. John came home with a webcam from a local thrift store today, and I jumped his case almost right away for buying that type item used. Then felt horrible when he explained that in his nursing studies a small bit about early childhood development stated children younger than 12 months basically forget a parent or loved one when they are absent. ::sob:: He said he couldn’t bear the thought of her forgetting us and that we should Skype every night possible. ( I adore this man my soul mate )…So you must know that when we informed Donavan that we were going to have a baby he was utterly disgusted and said we were “ a fricken embarrassment”. He stated how sick and OLD (I am 37) and disgusting we were, and that he would no longer be seen with us, nor would he ever be seen with “that baby” !! That held up solidly without fail throughout my entire pregnancy and until Lilah turned 4 months old and played a smile on him like he was the most handsome boy on God’s earth….. Now they are inseparable and he holds her and rocks her and tickles her and SINGS to her…I have teared up so many times listening to Donavan talk to her, via our baby monitors throughout the house.

     Last operation (11 months ago) Donavan’s sister Madison and John got him a puppy to encourage him to walk…We won’t be needing anything this year..Lilah will be all the inspiration I bet. He can’t even stand to let her fuss in her crib after a nap, he hurries to grab her up and then that is when I hear him speaking to her in her room. Something like this, “You want to go have some peas, let’s go see if we have any peas Lilah”  “ I Like Peasssss MMmmmm… I’m telling you it melts my heart.

     Tomorrow Donavan has physical therapy again at 1pm.. I have increased his pain meds before pt for the therapist to draw more out of Donavan… problem is they said last Friday that he was not improving and had not significantly  improved in the 3 months we have been going that Donavan has been home from 8^th grade. I have carried that with me all weekend worrying. I know once we learned we could book his surgery that I could have cancelled the rest of his pt but I was too scared to stop it. He has worked so incredibly hard, and for hardly anything.. His range of motion is so poor we hardly need the timer for his exercises because he can’t hold a position but for 10-15 seconds before he doubles over in tears; trying his best to hold it in. Donavan is not a crier; this is why I am so disturbed. The therapists are saying to me, will Dr. Standard be able to fix this? When he gets back will he be all better? I sink a bit and tell them that we all have every hope that this reconstruction will set him on the path to greater physical stability and strengthen him for next year’s leg lengthening. This does not answer their questions really, but they leave me alone… Donavan’s femoral head is so severely misshapen that the ball (femoral head) is not inside his hip “cup” and things do not glide proper, they crunch. His last surgery here in S.C. was a left femoral valgus osteotomy. It was not successful. We knew it was not and just cringed afterwards because it took Donavan 2 months in a wheelchair and walker, then 4 months on crutches and a year of constant pt (physical therapy) to walk again with confidence. That was 7^th grade, he had an anxiety attack at open house for the school and he had to begin school that year as the new kid from Texas, (age 13) on crutches. We had to forcibly take his crutches and hide them from him, because he feared falling and breaking his hip so much that he refused to try and walk. It was such a tumultuous year, 13 and new to S.C. new kid in school. Kids were cruel to him in ways I couldn’t nightmare about, but that’s an entirely different subject.

     Donavan has learned in the past year to enjoy eating healthy and to walk whenever able. This past 3 months at home immobilized in pain, has been hell on him. He longs to run, jump down from beach embankments and bend without hurting. The leg lengthening is last and he understands why. It’s a very long process to change your body with surgery when you are still growing like a weed.

     To brighten Donavan’s week before we leave I dug a brisket out of the freezer that I had been saving for a special occasion. Donavan adores brisket, his grandmother used to make it for him in Terrell.  I learned from her and try my best (wink !) We had the grill all prepared and I was rushing about trying to feed Lilah and help John get ready for a dump run, when he saw me heading towards the grill with the brisket, ready to throw her on for a sear when he exclaimed “ What are you doing!?”….. I told him get out of my way the brisket was heavy and what did he mean what was I doing??? I was going to put the brisket on!! He said “You CANT grill brisket without TINFOIL”…. HahahHAhahaaaaa….. His grandma Bev (paternal grandmother) used to tent the brisket in heavy foil to trap smoke. I didn’t have time to do that today people. But I saw in his eyes how serious he was and that little request made all the difference tonight when I watched him enjoy it. Four days and a wake up until we leave. Goodnight C:

P.S.
If you have noticed that all the pics I post of Donavan, are in a Pink Floyd, Led Zeppelin, Guinness or Beatles black t-shirt….that’s because he will ONLY wear those shirts out of all he has..So I wash constantly. I didn’t want anyone to think we don’t wash. Lol.

26 April 2011, Six more days & a wakeup .. .. TAKE 2 :(

It's 12:59 am, and John and I just learned the MOST frustrating and hurtful angering and emotionally exhaustive lesson in blogging after writing for 2 hours..........>- save and save and ALWAYS save :(((((((((((((((( I basically want to shoot myself right now...two hours..two hours documenting our day and pushed publish instead of save then publish. Im so sick to my stomach right now, gaging on tears of such anger with myself..... WHY NOW... I am going to try quickly here to sum up ( can't possibly begin) what we had just written about Donavan today. Last night I did not get to bed until 2am and now I see I am right back there... Oh Lilah I pray you sleep in a bit for mommy!
    Here goes :(( ( i keep going back and refreshing, hoping desperately it will appear :'(
Okay, I will never let this happen again. This tonights blog(lost!) was about everything that is still so up in the air and we have only 5 more days and a wakeup left to pull it altogether. We have no wheelchair ramp, John cant build one again this year because he is wking fulltime and schooling fulltime, also will be taking care of Lilah... I dont want to face coming home the 24th in a rain storm or having the dog underfoot and Donavan unstably hoisted up steps :( He is growing so phobic about maneuverability post op. I have tried all day Friday and today to get help with having one installed but nothing... Also we have yet to secure a wheelchair. Problem is that it must be a light weight collapsible wheelchair that we can gatecheck from here to Atlanta and then on to Baltimore... We must bring our own because we wont be able to get one there to come home with... The trip and its connections going to Baltimore are no trouble, its going to be horrible coming back the way/route we came...Baltimore---> Atlanta, Atl to Brunswick all with a super anxious child who will have no personal chair space in a busy airport, to protect his leg !!!! He keepd asking me cant he just have some Benedryl before we depart Baltimore and sleep through to our departing gate in Atl... First of all Benedryl does not work on him like it used to at 5yrs...second of all I need him to help navigate him in his chair with a hefty carry on of all his meds to get through the day. Atlanta airport is not for the weak, let alone a 14 yr old kid in a Scottish Rite Brace in a wheelchair, who just had massive hip surgery not 3 weeks prior. I would drive if I had the money and a reliable vehicle Donavan could stretch his left leg out in...I'd be on 95 S so quickly, April 24th with Donavan and his Ipod in back while I look on him in the rear view mirror all the way back home to Beaufort, S.C.......    Roll ON Weekend.... so that I may feast on Monday, a bussiness day... and get answers about some of things up so high in the air :(
Friends this is not even half the post John and I had written and not "saved",,, all the best details and explanations, humor and direction GONE POOF... because I did not save before pressing publish. Im so discouraged and so tired. Tomorrow is a new day, I will try again! Goodnight C:

1:30am

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

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

24 March 2011 A start.

Well it's 10:40 pm and John already tried making me go of to bed already an hour ago, but I can't. I thought all day long about a first blog entry for this, my sons journey to Baltimore for surgery with Doc Standard. I participate in at least 40 different menial projects a day all surrounded with getting Donavan,John, Lilah and I ready for this trip, but I never finish a one of them... It is fustrating but tonight I am not going to sleep until I feel satisfied with this. Eight days until we leave and today Donavan said I needed to "relax". Relax? I said to him, are you out of your mind-? Bless him, he just does not get it, anything...I don't want him to. The pressure is immense, he has enough. Maybe I do want him to "get it" but not until he is like 30 something and maybe pawing through a scrapbook type thing and skimming various memories , of this journey that I have saved. I wish I could hold it altogether, this...its a lot. I personally am all over the place and I want to convey in this noted journey, the essence of what its like to be a parent of a child with bad bones in need of immediate care. I hope you will continue to follow Donavan and I and John and Lilah, Beaufort and Baltimore...surgery and life around it. Goodnight and thanks for witnessing my very 1st blog C :

Welcome to Donavan's Journey

My son Donavan has LCPD, Legg Calve Perthes disease, http://www.perthesnz.bravehost.com/ he is 14 years old. He has been battling this selfish and ruthless disease for almost 7 years. Donavan developed Perthes disease at age 8. He is now considered at the age of "maturity" and our local surgeon wants to put 2 screws in his good legs knee, and stunt its growth to allow the bad leg to catch up because Donavan has an LLD (leg length discrepancy). Many believe that procedure to be old school and ineffective as it does not always stop growth. Because of this leg length discrepancy that Donavan has had for years, he has a dramatic limp that is so uneven he requires a lift in his shoe to help slow down the damage to his spine and knees. His spine is taking a real beating right now.

We sought a second opinion, in Baltimore Maryland from a Dr.Shawn Standard at Sinai Hospital of advanced Orthopedics and Limb Lengthening. Dr.Standard is a LCPD specialist who treats all different ages of Perthes sufferers who have leg length discrepancies. He is a frontier in the medical Perthes community for conducting more humane and successful treatments of Perthes. After an all-day evaluation full of further testing, x-rays and calculations while we were there, Dr. Standard felt confidently that there is no rush to stunt Donavan’s growth at 14! He stated it was much more important to address Donavan’s prior failed osteotomy, where his femoral head (hip joint (ball) fits into the socket) is not contained. It is large and severely misshapen, causing it to not glide or rotates well, which prevents Donavan from having much needed mobility and flexibility! Also to stabilize his hip and pelvic muscular structure. This is what holds my boy up, after all! Dr. Standard will perform a Left Femoral Dislocating, reshaping and restorative Femoral Osteotomy on Donavan. This is a massive surgery. It requires us to be in Baltimore for a minimum of 2 weeks post operatively providing there is no complication during or immediately after surgery. Donavan will be braced and immobilized for 3 months with no weight bearing, making sure that the hip not pull back out and heal well. Then it will be constant hydro and land physical therapy for a year, to strengthen him enough to learn to walk again.

Donavan & Dr.Shawn Standard

We ask your donation, to assist us in achieving this trip for surgery and aftercare for Donavan. Donavan has Tricare medical insurance. We have just been given the go ahead to book the surgery and nothing more. We will need to travel from Beaufort, S.C. to Sinai Hospital in Baltimore, Maryland and back. Our family is asking for your donations for the out of pocket expenses of travel, temporary lodging for 2 weeks,food,co-pays, Rx's, wheelchair, walker, crutches, physical therapy and additional fee's Tricare denies. Our family’s conservative estimate of these expenses is a minimum of $20,000. PLEASE do not feel discouraged if you cannot afford to donate to Donavan, but pass along this story link to anyone you feel may be capable of helping us to help him.

Donavan's lifelong dream has been to be capable of playing football. We strive for this every single day! He was kept from all sports beginning at the age of 8 years old, by the intense pain of this disease, which took over his entire childhood and kept him from even walking for months on end. Donavan is approaching high school this fall and we pray for him a new lease on life that he be deserved an opportunity at the chance of living life as a normal 14 year old. We welcome any questions to mcleve@gmail.com



OR


ahipfordonavan
P.O. Box 382
Port Royal, S.C. 29935