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Do you have a 'very Special Child'?
Then you might be interested in my TAILS!!
I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.
Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.
Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!
I have done this for 2 years, to every shirt she has, and it's very easy!!!
For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.
Click here for DETAILS and PICTURES.
http://www.babyjellybeans.com/web/do/site/photo?ID=723096
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Suzy is doing well ~
(except for waking up today with a fever and a cold.....but that's just normal toddler stuff.)
She was back at school last week and lovin' it.
On Friday we went to the Children's Hospital to have x-rays taken of her hips and spine again. We will find out results on Tuesday. Children with Cerebral Palsy (and brain injuries in general) have a tendacy to get scoliosis and hip subluxation. Their bending and twisty bodies pull their skeletal system "out of wack."
I'm O.K. with a curving spine (to a certain degree) but I'm NOT O.K. with her hips coming out of the socket. We get x-rays every 6 months. Last year her spine stayed at a 13 degree curve all year (no big deal)! Her right hip stayed at a 25 % subluxation (no big deal)! But her left hip stayed at a 40% subluxation (starting to be a deal).
The good news is ~ there was no changes all year!
The bad news is ~ if a hip becomes 100% subluxed it means it is completely uncovered (or out of the socket). That usually means a rather extensive surgery and recovery. I'm REALLY praying that things have stayed the same.
We will also be getting Botox injections again on Friday. She gets her ankles botoxed and her left adductor muscle. This releases some of the tension by paralyzing the muscle.....
It actually works pretty well for her. And by releasing the tightness in her ankles it seems to calm down the tension all the way up to her back.
We are also doing a trial of "upping" her Baclofen medication (which is a muscle relaxer) to see if that helps the tightness, or just causes her to be weaker and sleepy.
If oral baclofen relaxes the tension in her hips and hamstrings ~ it's a good thing.
But that means it is also weakening ALL her muscles ~ BAD thing!! Now it's harder for her to hold up her head, or hold a crawl position, or stand up without collapsing (which she has been doing great at lately!!)
So the medication question is a "catch 22" - a "damned if you DO and damned if you don't"!)
And she is not your classic spastic case. Her muscles don't stay tight like many children. She has dystonic posturing (where she essentially tightens us certain places at times but she can release and move the muscles, too).
I posted some pics of her under PHOTOS - Balloon and Fruit Loop Therapy:
She is laying under a table of balloons and trying to reach up and bat the balloons. She was having more fun trying to lick the balloons.
And she was in her stander with a tray of Fruit Loops (which she loves) and pushing them around. Notice the sippy cup in her HAND!!! She held it for a few seconds and even pulled it up to her mouth. Oh, how excited I will be when she can drink by herself.
Have a great week.
Peace,
Whitney
p.s. - if you're visiting, and have an extra minute, please post a comment. I LOVE to hear from you. It really makes my day to read a comment.
We have returned from a great week in Richmond, VA participating in CME Medek Therapy. I took Suzy to work with a Medek therapist (Sarah Kranz) and Jenny came along to help! We had met Sarah last year when we went to NY to do CME Therapy. Fortunately for us, Sarah has now moved to Richmond which is only 2 hours away from home!!!!!
We have not done any CME Medek for a year. I felt it was too far away and too expensive to go to NY as frequently as was needed. (However, we have always LOVED this type of therapy) Now that a therapist is in Richmond it's worth taking a second try.
CME Medek is a very intense physical therapy program that challenges the child's motor planning skills and balance abilities. It takes a HUGE committment from us because the CME Medek protocol is to go to a therapist for 5 days, and learn new exercises, and then come home and DO the exercises twice a day with Suzy.
If it was just me - well..... I don't think I could re-visit this therapy program.
However, I took Jenny with me to Richmond and she is also getting trained in the exercises. SO, maybe between the 2 of us we can make a committment to really try this out.
The "plan" is to go to Richmond and meet with Sarah every month for about 4 days. Sarah will work with Suzy, Jenny and myself to become increasingly better at various exercises. Then, Jenny and I will share the work at home by doing the exercises with Suzy each day.
In February we will also be going to New Jersey for 1 week to do CME Medek with a "long time professional" and see what he is like (Azriel Novogrodor). He comes HIGHLY recommended.
Then, we will re-evaluate our Medek committment in 6 months and see where we are, and how the 6 months have effected Suzy.
I am very excited about the possibilities.
After being with Sarah and starting up Medek again I already saw some awesome gains with Suzy - and this was all from just ONE WEEK. She amazed me.
I feel like maybe she is READY for it this year!
I am going to pray that God guides us on this journey. I'm sure He will. He always does.
I posted a video of Suzy doing 3 (of the 20) exercises with Sarah. Most of the exercises involve putting Suzy into a 'body situation' and then waiting for her to respond. (*practice makes perfect*).
The first is called "Squat-to-Stand" - she is rolled up into a squatting position and then we WAIT for her to stand up! She did great at this.
The second is called "Straddle-Side-Sit"- she straddles our waiste, is rolled to her side, and she must USE her SIDE muscles to pull herself up to a sit.
The third is called "Tall Kneel" - she is moved up to a tall kneeling position against our arm, and then she must maintain the position for a second at a time while we lower the hold on her (continually making it more challenging.)
I'll keep you posted on her progress!!
It’s time to make resolutions….and I’m awful at it.
I make them – but I don’t stick to them.
Then I heard this:
I frequently listen to KLOVE (a Christian radio station) and they are promoting an idea – “My One Word”. www.myoneword.com
The challenge is simple: lose the long list of changes you want to make this year and instead pick ONE WORD. This process provides clarity. One word focuses on your character and creates a vision for your future. When you choose a single word, you have a single focus. You are moving toward the future rather than swearing off the past.
I can do this! I can pick one word to live by in 2011. For that matter, so can my whole family. I made everyone pick a word.
My word is “PRAISE!”
I decided on this word because I tend to complain (mainly these past couple of years).
So I’m going stop complaining about Suzy’s progress, my weight, our finances, traffic, lack of sleep, cleaning, inflation, the future, etc.
Instead I’m going to PRAISE.
I’m PRAISING my incredible husband and our strong marriage.
I’m PRAISING my girls –Gracie, Maggie and Suzy!
I’m going to PRAISE Suzy’s accomplishments (no matter how small.)
And PRAISE healthy, low fat foods.
And PRAISE my new gym membership. (**HELP!* * I hate exercise!! )
I’m PRAISING God.
I’m PRAISING the rain, frozen dinners, Grey’s Anatomy, wine, vacuum cleaners, mascara, weekends, my parents, Jenny,
I’m going to PRAISE so much that I make everyone nauseous.
In 2010 I had a lot to praise – I just didn’t appreciate it enough. This year is going to be different. I pray that after months of making myself PRAISE instead of complain I will start to really feel it and live it. And PRAISING will be an ingrained part of my soul. And that will make me a happier and better person.
Wanna join me? How about picking your own word? If you do, PLEASE share it with me!! I would love to hear about it. We can support each other! Post it under COMMENTS.
Speaking of PRAISING – check out the new PHOTOS under PRAISING SUZY. And watch my new attitude unfold.
Happy New Year
Whitney
The Booze Crew is good. 'Tis the season to be jolly! Right??
Suzy has had 2 minor sicknesses (cold and cough) and gotten over both very quickly.
She continues to do well in school. I still praise God everyday for the 3 teachers that she has.
She also loves her main Physical Therapis - Missy. They have a super relationship. Suzy performs better for her than for me. Missy has her reaching and trying to play with toys AND yesterday she had Suzy turning pages of a book all by herself! Also, this week Missy had Suzy sit on a 'bolster swing' and Suzy had to hold on to the rope. Missy took turns LETTING GO OF SUZY and she was able to hold on (by herself) and stay for a few moments before falling over!!! Very cool. She was so proud of herself. Another activity they are working on is crawling. She wraps a sheet around Suzy's middle section, Suzy gets onto all 4's, and Missy guides her forward. It is very sloppy...but at least it's a start and she is getting the 'feeling' of crawling. (Suzy doesn't 'get' that she needs to move her arms.)
I posted pictures of these great therapy sessions under "PHOTOS - Showing Off At PT"
We have not traveled anywhere in 6 weeks! We have not had the time or money to make any trips. Gracie and Maggie have been happy to have us home. I welcome the rest; but I can't help but worry that we should be doing MORE!! and SOON!
I am planning a trip to New Jersey in January to do a week of Medek Therapy. And I hope to get back to her ABM therapist, Carla Reed, in Northern Va soon after that.
I'm hoping to do one more year of intense therapy and see where we are next Christmas. I certainly can't continue like this forever.......i simply don't have the financial means ro the energy....but I just can't give up yet....
We are about to face our third Christmas with Suzy since her injury.......
It is bittersweet.
My heart is sad when I'm shopping.
Twice last week I was in Toys R Us. And twice I started to cry. I see all of the wonderful toys she SHOULD be playing with - and all of the things I would love to be able to buy for her - doll houses, babies, toy kitchens, and bikes. Things that a normal 3 year old would love.
But then I headed over to the Fisher Price isle to buy toys for
0-6 month old babies......... things that she might actually have a chance to play with...and I find that I am still mourning our loss.
The "happiness" comes when I remember that we received a miracle - we have another Christmas with our baby. We were never supposed to have another Christmas with her. And we never know how many more we will be blessed with. We cherish our days with her. And we thank God everyday that He let us keep her. He is in control, and only HE knows her future. I'm just grateful that He trusts us to care for her, and love her.
I pray that everyone has a safe and happy and HEALTHY holiday.
New PHOTOS - Showing off At PT
Merry Christmas.
Peace,
Whitney
Hello God.
Are you there? It's me, Whitney.
Tonight my daughter Maggie was writing in her journal. It's a "Fairy Wishes" journal. The journal prompts the child on what to write about. I peeked at it when she was in the tub...
God, I was wondering if you could pay her journal some attention?
The journal asked Maggie, "What are your secret dreams?"
And Maggie wrote I dream about
1. my sister, Suzy, getting better. I dream that she can walk and talk and sing.
2. getting my own Yorkie puppy.
3. having a laptop.
The journal asked, "What's the best dream you ever had?"
And Maggie wrote I dreamed that Suzy was normal again. She was playing with me, and we were riding bikes together.
And I also dreamed that I could really really really fly.
The journal asked, "What do you think your dreams mean?"
And Maggie wrote I just can't forget about that night when the ambulance came, and took Suzy to the hospital, and she didn't wake up. And I miss her more than anything. If I could change anything, it would be to please please please make her a normal person again.
God, Maggie is pretty sensitive. And she really loves her sister. Do you think you could help Maggie with some of her dreams? Could you help comfort her when she is dreaming bad dreams? God, I need you to watch over my precious Mag-Pie.
Thank you.
Whitney
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