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.
Suzy and I have returned from 4 great days of ABM therapy. Suzy and her practitioner worked on many different things, but this time focused on shoulder movements (Suzy does not know how to move her shoulders), and on 'feeling' her back, spine, and sternum. She is learning how to move these body parts independantly instead of as one big torso. I really love this therapy, but it is so difficult to explain what it is. It is different from typical PT in that there is NO stretching, or forced movements. There is no locking the body parts into splints, or afo's or standers, or other 'contraptions'. The body is NOT placed into a position that it cannot naturally do (and for Suzy, this incorparates a lot of positions). The therapy does not begin with the body and bones; but with the BRAIN - it is all about helping the brain to form new neural patterns and pathways. It is based on movement and how movement organizes the brain.
"ABM facilitates for the child new ways to move with minimum effort and difficulty. With the formation of new patterns of movement, the child's brain is upgraded into that learning state and begins the process of differentiation - which is the basis of intelligence."
So, have I seen anything miraculous after doing 4 sessions? - no.
But I have seen some super learning going on and I have seen some great small changes, and I believe that if we continue with the therapy the new learned pathways will add up to good things.
Now that we're back in town I have 3 days to 'catch up' on life and loose ends, and then we will leave for CA on Friday for a stem cell treatment.
Suzy received a NEW wheelchair and this week we are making some adjustments and 'tweeks' to get it to fit her. I LOVE this chair. It is a 'dynamic' wheelchair. So, it MOVES with her. When she extends, or flexes forward, or postures, or just pushes herself around, the chair will go WITH her, and then bring her back to neutral. So, if she pushes backwards (which she does alot, thanks to the damaged brain causing a strong extension pattern), it won't feel like she is pushing on a wall. The chair goes with her. How cool is that??? We met with the rep today who sold it to us. He is making some new adjustments, and then I will post pics of her in it later this week. For anyone interested, it is a KidsRock FAST chair - http://www.dejay.com.au/index.phpid=23,145,0,0,1,0
Also, she received her 4th pair of AFO's (Ankle Foot Orthotics), or feet splints. They NEVER work for her. Nobody has been able to create a pair that fit her, and that she can keep on. We have been to 3 different orthotists in 2 years. I'm not sure why she is such a difficult fit........ The pair this week are cool, in that they actually bend at the ankle (the others did not)...but after wearing for 2 hours she began screaming. So, I pulled them off to find HUGE black and blue bruises below both knees. It was awful looking. poor baby. They were pinching the heck out of her. Check out pictures under photos - crappy splints. So, we will head back to the orthotist this week.
I am also planning a big garage sale for next weekend to raise money for her therapies. My super sister is helping and hosting the sale in her yard (she lives in Croatan here in Va. Beach.) For anyone local: if you have any items that you are looking to get rid of, or were going to give to Good Will, I will gladly take them off your hands to sell at the sale. I will come to your place to pick them up.
Maggie and Gracie are doing great. And my darling husband continues to be the rock of our family. I must publically thank him for supporting me as I travel the globe with Suzy. He is my hero.
I pray that all of my beautiful mom friends had a blessed Mother's Day.
.....Breathe…..slow, deep breaths…....
Thinking about the next 2 months is making me feel like I’m going from mildly insane to certifiably crazy. I have recently planned a very intense 10 weeks for Suzy and I.
On one hand, I am totally stressed out, nervous, and overwhelmed.
I am worried about the energy it’s going to require and I’m worried about where the money is coming from.
On the other hand, I am excited. I am grateful that I have these opportunities to help Suzy, and I am anxious to see what results we might see by the end of summer. I am thrilled that I have the blessings from my family to go ‘crazy’ for the next 10 weeks.
Our schedule is intense; but I’m hoping it will be manageable:
Suzy and I leave this weekend, Friday May 7th, to spend 4 days (8 sessions) in Northern VA doing ABM Therapy. We will work with Carla Reed. I LOVE this therapy. Maggie is going with us to keep us company.
Suzy, my mom, and I will leave next weekend, May 14th, to go to San Diego, CA! We are staying for 4 days. Suzy will receive embryonic stem cells! I can’t wait to get her another infusion. I am praying these tiny cells will travel to her brain and create some new brain cells.
The following week, May 26th, Suzy and I (alone) will head up to NY, NY. We will be working with Marcy doing ABM Therapy again. Suzy will receive 8 more sessions.
And 2 weeks later, June 13th, Suzy and I are going back down to North Carolina for 24 days to do Hyperbaric Oxygen Therapy. We will rent a small apartment and she will receive 40 ‘dives’ (2 dives a day for an hour each time). Gracie, Maggie and Chris will come down and spend 10 days with us when the girls finish school on June 18th.
I am always encouraged by the results we receive when we do HBOT in NC.
In between the travel, she will continue with private PT 3 times a week, school-based PT 2 times a week, Speech once a week, and now OT once a week.
Yes, it’s going to be tough doing all the traveling…. But I’m praying that God will be right there with us, guiding us along, and holding our hand. With Him by our side, how can we possibly fail?
And I’m praying that the rewards will ease the pain.
I look at her sweet little face, and I watch her laugh with her sisters, and I hold her angel body in my lap while she sleeps,......and I know that I just have to try.
I am completely and totally in love with everything about this little girl; but I will continue trying to ease at least one of her many disabilities and improving her quality of life.
Thank you for all of your continues prayers.
I posted photos under - PHOTOS-April 2010
"BUBBLES AND BEADS"
Suzy has "home-school" services provided by our city's Special Ed program 2X a week. She has an amazing teacher, Miss Nina Nuckles, who comes to our house bursting with energy and fresh ideas. Suzy really responds to Miss Nina.
Yesterday, Miss Nina brought a bubble-blowing machine that was 'hooked-up' to a big, red, circle switch. The switch was placed on Suzy's wheelchair tray, and everytime Suzy hit the switch a big stream of bubbles poured out of the machine. Suzy LOVED it. She thought it was magical.
Miss Nina also had big strands of colored beads that Suzy had fun playing with. She pushed her fingers through the beads, and tried to eat them all.
I posted pics under PHOTOS-Bubbles and Beads.
Last night, Gracie and I were playing around with Suzy........
and Gracie made a funny "K" sound, and told Suzy to do it - AND SHE DID!!
Then, Gracie made the "bubble blowing" sound, and told Suzy to do it - AND SHE DID!!!
So, I made the "MMMM" sound, and told Suzy to do it - and it took her about 6 seconds of trying to get her mouth closed; but then SHE DID IT!!
Gracie and I had a small heart attack.
Suzy continued to mimick us and these 3 sounds for about 5 minutes before becoming bored (or tired) of the game.
I was deliriously happy. And Gracie was so impressed with her sister. I truly didn't think Suzy was ready to start making sounds. This shows me to never underestimate our kiddos!
"Mommies aren't supposed to get sick!"
At least, that's what I kept telling myself the past 3 days when I was hugging the toilet.
Somehow I survived ( I wasn't always sure I wanted to)..... thanks to an amazing husband that took over the fort. Luckily, none of the girls got sick (yet, anyway!)
It's a cruel joke that mother nature plays on all mommies - we finally get to lay in bed, read a book, or sip tea, and close the door to the chaos we call "home"; yet we're too miserable to enjoy it.
Here's to all the beautiful mommies who get to hug their porcelain throne sometime this year!! At least enjoy the weight loss.