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: