Happy Thanksgiving

I am part of an online group of mothers of children who have hemiplegia (the type of CP that Sharon has). One mother wrote this poem about her 11 year old son...
It sums it all up better than i could!

Thank You

Thank you dear Lord for sending this boy
Who fills us with love and gives others such joy.

Who could have known that the lessons he’d teach
would come from a place I hoped never to reach.

His road is much harder than mine ever will be
Yet he walks it with courage for all people to see.

I’ve learned from this child not to see what “can’t be”,
But to find all the miracles and see what God sees .

So on this Thanksgiving Day and always …..

I Thank you for every big one armed embrace
And for every new challenge he faces with grace.

I Thank you for all of those lopsided grins
and for all of those kisses that land on my chin.

For each “Look, Mom I did it! Wanna see it again?”,
And for each time he feels, what it feels like to win.

For those DAFOS and AFOS and SAEBOS we score
and for OTs and PTs and STs and more!

For the people YOU send us that throw us a rope
with patience and guidance and most of all…. hope.

Thank You for the honor of raising this boy,
for trusting me with his care and for showing us joy!

So our little one is back in business. It's amazing that we are barely even giving her tylenol at this point, and three days ago she was still in lots of pain!

Yesterday we had some wonderful visitors come to play and offer some reprieve! Mimi and Ally (can it be i've only just met them this year??) came with games, food, and most importantly: fresh energy! It gave RJ a chance to chop some wood and me a chance to do other things (mostly wander around and wonder what to do since there's too much to try to catch up on!) Sharon took to them happily and had a ball. Thanks Gals!!!! (this was after the worst night we've had since we've been home so we were all very bleary eyed). They tired her our enough that she slept wonderfully last night! yay!!!
And today was a big day for her. She went to school for almost two hours. She was very scared at first and didn't want me to leave her, but she settled down and had fun after a bit. Her little classmates came over to her wheelchair when i brought her in and one of them hugged her. It was too cute! And later today, since the weather was gorgeous, i took her up to see the horse (who i've been missing terribly!). I just carried her around up there and she had fun watching the dog run around and letting the horse give her kisses.
So all in all, a fun day, and comfortable day for Sharon, and we are so happy to be able to get out of the house!!

Hello!
I've been getting "technical" questions that i thought i would take a moment to answer...and am also going to post a picture of the cast so that you can see what she has to contend with for the next month.
The surgery was called a proximal bilateral femoral osteotomy. Sharon has hip dysplasia (yes, the same thing that dogs get) in her right hip and her left hip was showing signs of abnormality as well. Her femur bones were cut at the top (where the bones sticks out of your leg, well, not "out", but you can feel it if you push on it) and then realigned so that they would fit into the socket. Her sockets weren't forming correctly (they were completely straight instead of rounded).
This surgery has NOTHING to do with her walking or her cerebral palsy (that's the hardest part for people to grasp!). She has CP and will always walk with an uneven gait. If anything, this surgery will actually make her gait more uneven. This surgery was to help her bones form in the correct places so that she will not develop debilitating arthritis in 5-10 years. It was a "quality of life" surgery...There is a plate on each femur with 4 screws in it. This "hardware" will stay in for the next 12 months. This time next year, we will take her back in to have it removed (a simple procedure, recovery is supposed to be immediate).
THe time in the cast is 5 weeks, so we're down to 4 left! Yay! The cast will come off if all is well. After the casts are off, we really don't know how long it will take her to get moving again. Every child is different with this surgery, and kids with CP tend to take longer to get up and walking. It could take anywhere from weeks to 6 months for her to be walking again, we just won't know until she's out of the cast. The doctor said that some children start kicking and moving their legs as soon as the casts are off, while some keep their legs "frozen" in the casted position for quite a while and others (with CP this is most common) pull their legs up and bent and keep them that way for a while.
While Sharon is in the cast she is going to continue with speech, OT, and education therapy, but PT will be on hold until sometime in January. I love her PT and know that she'll help Sharon get up and moving again as quickly as Sharon will be able.
Her education therapist has worked it out that she is going to go to Sharon's preschool with her for a couple of hours each week. Sharon won't go back "full time" because the teachers won't be able to care for her, but she'll go with this therapist and i'm so glad that she's willing to do this! Sharon will stay in her stroller/wheelchair the entire time she is in school so i hope she doesn't get too frustrated. We are going to try for an hour and a half on Monday if Sharon is up for it...
We have taken her in the car and she's handling it well. It takes a lot out of her, but the pain is much more maneagable now. Sleeping continues to be the most difficult for her, but since she's never really slept anyway, it's just par for the course!
I hope this answers your questions!!! Now that the surgery is behind us, i'm more willing to describe it!!! I'm very glad that we waited to do it this time of year. She'd be miserable in the summer with these casts and not being able to play outside.
Oh, one more thing about the casts: i think the picture shows this, but they go to just above her thigh and then stop. They do NOT cover the incision site (which is amazing to me!). But they DO allow diaper access which is a huge improvement over how these casts were done just a couple of years ago. They are purely on for positioning reasons, and the bar is so that she is completely immobolized. You'll see that she's just figured out she can grab on to the bar and pull herself up into sitting, so that makes her happy. Oh, and she drew all over her belly before i took this picture...

little by little

So, she is now having more moments of being "herself". I can't tell you how good it is to see her smile or hear her "read" a book...
She is still in a lot of pain. I've talked to some people who have had bone surgery and they've said it's the worst pain they've ever felt and lasts about a week before it's truly tolerable. So a couple more days will hopefully get us over this hump. The next thing i'm looking forward to is being able to pick her up and move her around. She is beyond bored just sitting in the same chair all day long! But, she continues to be a trooper and allows herself to be amused by our attempts at entertainment. Nighttimes are still really tough. We're trying a new sleeping position tonight in hopes that we'll all get a little sleep...
We have put her in her stroller and taken her outside a little each day and she does love that...looking forward to more of that and also being able to get her back in the car and take her places...all in good time!
She didn't eat for the first 3-4 days, but is now getting her appetite back (as you can see from the picture we're letting her have whatever she'll eat!!!!)
She and uncle Jason played with the "Gracie doll" last night...
Thank you so much for the continued support. What a great group of family and friends we have!!!
Peace
Jaye, RJ, and Sharon I.

Well, here's our girl on the SLOW road upwards. As much pain as she is in and as hard as this has been for her, i am still amazed at the fact that she's doing as well as she is. If this were an adult, they'd be totally incapacitated...kids bodies are so amazing.
Anna came over to read to her and she perked up for the first time, wanting a book for herself to read at the same time.
And of course, Nobu her cat is not far from her side (he blends in, but he's beside her in the one shot!)
And the picture with the doll is too precious. Cousin Gracie (whose daddy Adam is battling cancer right now) had the heart to sent Sharon a package of special things which she picked out of her own toy supply! one was this doll, and Sharon loves it and has been playing with it...

home

Hello, it's Jaye. Thanks to Jax and Jason for keeping you all informed. I won't write much here, too tired! But, thanks for all the support and prayers (and packages! What fun we're going to have once Sharon is up for it!) Sharon is in a lot of pain. This is one of the most painful surgeries for anyone to have because it involves cutting bones. So we are in the throws of trying to keep her a comfortable as possible. She is not very interactive at this point and just wants Mommy or Daddy to be close enough to hold on to at all times. We were told that the first 2-3 days are the worst, so that puts us through tomorrow. And we are already seeing improvement in her pain from the first (awful) night. And while it was a little scary to be discharged less than 24 hours after this surgery, we ultimately decided it was better to leave in the hopes that Sharon could actually sleep since she probably only manage to get about 2 hours total of sleep in the 24 hours we were there. And last night, in her own bed with no nurses barging rudely in (nurses aren't high on my list right now! I can't believe the terrible people skills these nurses had...in a children's hospital no less!) she did sleep better although still in pain.
We are very grateful to her two wonderful doctors/surgeons. They were fantastic from pre-op (when they got me to laugh as they offered me valium) to discharge. They were the ones who stepped in and got the nurses to leave us alone so Sharon could sleep a little and also prescribed valium for her which has been her life-saver to stop the muscle spasms she has been having. Thank God for them (and narcotics!)
We'll obviously keep you all posted. Pray for her relief from pain.
Blessings
Jaye, RJ, and Sharon I.

The day after

This is Jacqueline - I have posted some pictures of Sharon today. She is doing as well as can be expected. She is smiling a bit more which is nice. She is taking oxycodone to manage the pain and valium for the muscle spasms she is having. These medicines can be taken at home so it seems like she will head home today. There is not much that the hospital staff is doing for her (other than continually waking her up for some reason or another). The hope is that she can get home and get some rest. A specialist came in to make sure that she can fit in her carseat for the long ride - so it looks like a go!

getting better

 
 
 

Post-Op

Hello - I just got back from UNC-Children's Hospital. Sharon came out of surgery and was dubbed the "banshee" by the post-op nurses. She was very angry and upset - Jaye was able to go in with her and get her calmed down (with the help of some morphine).
They wheeled her in to her room and got her settled with her own Nemo pillow. She is still heavily sedated for the pain so she is quite groggy but still managed to give a very weak smile to her nurse.
We hope that the family is able to get some rest tonight - they are allowing Jaye and RJ to both stay in her room (yay!).
Please pray for Sharon's pain relief - this is a painful surgery and the next few days will be tough.
Jacqueline

Surgery is done!

I just got word that Sharon is done surgery and everything went as expected.

There will be another update later on, when there is more to say.

Jason

Surgery

Hello - This is Jacqueline. For those of you checking in today, Sharon is scheduled to arrive at the hospital at 11:30 (poor baby will be hungry!). Jaye is estimating that her surgery will be around 1. So an update will be posted later this evening or tomorrow. Thank you for the prayers and support!

oops, here's the tennis shot!

fun trip

So we took a last plane ride/trip before we're homebound for awhile. I thought it would be good for Sharon to spend some time with her friend Molly (my best friend from high school's 3 year old) so we spent a few days with them. We didn't run around and visit a lot of people like we usually do when we are up there because that is very draining on Sharon and i didn't want to wear her out. We did get a chance to visit with Fred and Lorrie though, which was fabulous! Uncle Fred continues to get stronger and now has had botox and has leg braces. He and Sharon compared...what a pair...they inspire each other :) And Lorrie just continues to work and advocate for Fred, i don't know how she keeps up her energy!!!
This top photo is of Sharon RUNNING down the ramp in Fred's house. I had no idea she could walk on an incline, let alone running up and down it. She had a ball!!! I love the action shot...
The next is with Fred and Lorrie, who just had a big family trip to Disney and were getting Sharon excited for the Disney cruise we will be taking in a couple of months.
The third one down is Sharon and Molly playing hide and seek. They thought they were so clever hiding in the pantry and we just too adorable together. The last shot cracked me up. Molly wanted to play tennis with Sharon...but this shot about sums it up...both going separate directions, maybe even after separate balls??? Angela and I played tennis in our day and we probably looked the same way!!!
So, this will be our last post for a little while, hopefully it will be updated by my brother or sister. We had our pre-op appointment last week and met with both surgeons who will be working on Sharon. RJ hadn't met them before and felt better after talking with them. I did too. They expect a 4 hour procedure.
Keep up those prayers, the procedure will be sometime Thursday morning.
Thank you all...i don't think i've appreciated this blog so much since Sharon was just a tiny baby!!!
Peace
Jaye, RJ, and Sharon Isabella