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.
Parents who have "a child-like-Suzy" learn to appreciate the small stuff. We measure her life's events using INCHstones; not MILEstones. Progress happens in extremely small segments, at extremely slow paces. A mile is much too big a measurement for our children.
And yet, when an INCHstone DOES occur, "parents-who-have-a child-like-Suzy" learn to celebrate BIG - like balloons and champagne BIG - like clapping BIG time, and praising in a BIG way.
Because the inchstone might seem small; but it was miles and miles of hard work. Nothing comes easy for our children.
Nothing happens without determination (either on the part of the child, or on the part of the parents.)
We had such an INCHstone this weekend.
We have put Suzy in "walkers" for a couple of years. She finally started taking a couple of steps a few months ago ~ but NEVER without a push, or shove, or pull from me (or her sisters).
UNTIL THIS WEEKEND
I took her outside & plopped her in her KidWalk Walker. I turned around to talk to Chris.....and suddenly SUZY WAS MOVING - FORWARD - BY HERSELF!!!
She did it again.
Maggie started calling her, and Suzy started 'walking' toward Maggie.
And she was moving fast.
I grabbed my handy-dandy Flip Recorder and caught it on video.
Big time fun.
She was having a ball.
She inspires me every day.
Adorable Video: http://www.suzybooze.com/web/do/site/video?ID=720326
posted under: Video ~Runnin' Along
On Friday Suzy received a wonderful delivery from Mr. UPS!!!
Insurance approved and shipped out a RIFTON PACER in HOT PINK!!!
What's a PACER? ~ It is a walking device. And it is awesome.
Suzy has other Walkers (the KidWalk and the Pony); but neither one has worked as well for her as this Pacer.
She trialed one at Therapy - and we decided she needs to have one at home that she can get into EVERY DAY!!
It supports her the best.
We spent time it in this weekend (outside - which is her greatest motivator!!! She LOVES to be outside ~ especially when it is
cooler and there is a breeze.)
Did she WALK in it?...
She only took 3 steps at a time.
And she only did that about 4 times.
But it's a start.
And you have to start somewhere, right?
And, yes, we have started this 'walking concept' many times - and yes, I know that she is never going to actually walk by herself,
.....but she might actually get to where she is propelling herself forward in an upright position (we can loosley call that walking, right?)And if she never does that, then that is O.K., too.
Because she LIKES being upright, and she loves being outside, and she is HAPPY!!!!!
IT'S ALL GOOD!
Summer is ending, and I'm sad. It's been a great summer. The girls all start school on Tuesday, Sept. 4th, and I really hate to see them go.
Gracie goes to 8th grade, Maggie starts 5th and Suzy will do preschool in the morning and Kindergarten in the afternoon.
Suzy truly has the best of both worlds this year, and I am SO excited for HER and FOR ME!!!
She will be in her same preschool class at Princess Anne ES each morning, with her same amazing teacher, and then she will be fed lunch, and taken down the hall to the AWeSOme Miss Tara for kindergarten.
3 times a week she will be picked up a little early to go to see her favorite Miss Karen for PT.
I'm looking forward to a great school year.
This August Suzy has been sick for most of it. She spent the first 3 weeks with strep, fevers, colds, and lots of respiratory crap. She was having multiple breathing treatments each day, and tons of coughing fits all night. We were missing our happy Suzy, and we were missing LOTS of sleep.
She managed to pass on the bronchitis to me, and I was down and out for a few days.
Luckily she was 100% by August 22 when we left for our summer vacation. We went to Disney World (our FIRST time!!) and stayed for 9 days. We had been putting off going - we weren't sure how Suzy would handle the parks....But we finally 'bit the bullet' and went - and it was amazing.
We did a 'park day', then a 'relaxing by the pool day', then a park day, etc.
I must say that Disney was AMAZING for any child with a disability. We were so impressed. Suzy was treated like a princess.
There were many rides that Suzy could stay in her wheelchair and ride. Her favorite was the Winnie the Pooh in Magic Kingdom. She lit up and laughed during the whole ride. (we did it 3 times.)
If they didn't have a special car, then she could sit in our lap (like on the Peter Pan ride).
We received a "disability pass" on the first day, which allowed us to go to the front of every line. Huge bonus!!!!! Even if she was not riding the ride the other members of our party could still go to the front. We did not wait for a ride for more than 10 minutes.
Disney World got an A+ from me for being handicapped accessible!!!
Jenny, our beloved nanny from years past, flew down to Disney and stayed with us for 5 days. Jenny is, and will always be, Suzy's BFF.
Which brings up more great news - Jenny is going to be working for us again (temporarily). She is going to be moving to London in January; but, until then , she is going to pick Suzy up from school twice a week and take her to therapy. Jenny is also going to babysit 2 Friday nights a month - which means that Chris and I will be able to GO OUT!!!! We have NOT BEEN OUT TOGETHER, AT NIGHT, BY OURSELVES, ON A DATE, for almost 2 years. I selfishly admitt that I am looking forward to being without the kids for a few hours each month. (granted, we will not be staying out very late because Suzy still likes to wake up during the night...... but we are just looking forward to anytime alone that we can get!)
I pray that all of your munchkins have an easy transition to starting school this year.
Thank you for continually checking in on us.
I posted pictures (a shamefully large quantity of pictures) under PHOTOS-Disney 2012.
Just a few "catch-ups" on the life of Suzy & her fam:
Most exciting news ~
Suzy GOT HER VERY OWN ADAPTED TRICYCLE !!!
(an Adapted Tryke is made for handicapped children, and can hold a child who can't even sit up. It can be steered and pushed from behind by the caregiver (i.e.~ mommy), has a 5-point harness, the peddles have straps, and a head rest can be used to hold their precious heads!)
We applied to insurance for a tryke 2 times. We were denied both times!! I DO NOT understand why a child with some major disabilities would be denied this very important piece of equipment! It is more beneficial to Suzy than MOST of her pieces of equipment.
WHY? Let me count the ways;
I have found that a tryke:
-creates EXERCISE for these kids
- and stretching of muscles,
-and loosening of high tone,
-and practicing of reciprocle motion,
-and burns calories,
-and reinforces 'cause&effect'
-and gets the child OUTSIDE getting Vitamin D and FRESH AIR
-and gives the child an activity that CREATES NORMALACY for a 5 year old !!!!
Suzy is outside doing something that every other kid her age is doing. And she rides her tryke up to THE PARK -how NORMAL IS THAT??
So, we were denied a tryke by insurance 2 times. And an Adaptive Tricycle is expensive (ours was the cheapest out there and still cost $2,100.00).
However, my amazing, awesome, loving brother and my beautiful, kind, sweet, sister(-in-law) felt in their heart that Suzy needed that tryke. So, they offered to pay for half. (I'm going to cry again just writing about it).
Chris and I paid for the other half, and Suzy got her tryke!
And SHE LOVES IT!!!
Are you ready for the MIRACLE? My baby girl is ACTUALLY PEDDLING THIS TRYKE BY HERSELF!!!!! And she realizes what she is doing, and she is so damn proud of herself.
Brian and Michelle - thank you for your generocity.
We love you guys.
If you are interested in getting an adaptive tryke for your disabled child, here is my recommendation:
Check out the Rifton Tryke:
We priced them all, and Rifton was the cheapest (by a couple thousand dollars).
And it is AWESOME!!!!!!!
It is very well built, and it very easy to get Suzy strapped in and out.
Hers comes with every option you can think of. The Rifton is delivered COMPLETELY ASSEMBLED!! (A few of the other tricycles have to be taken to a bike shop for assembly).
And - you do not need ANY TOOLS to make adjustments. My favorite feature!
Rifton is an outstanding company to work with. Ask for Anne & tell her you know Suzy. Anne is a delightful and helpful customer rep.! I highly recommend this trycicle.
Suzy is finally feeling better. It's been a challenging couple of weeks.
Suzy went in to have blood work, and we were sent straight to the ER - her hemoglobin levels was extremely low (a 6.5).
Upon further testing, we found that her iron levels were very very low, too. She wasn't even MAKING any red blood cells.
This explains her symptoms- lethargic, pale, circles under her eyes, just "not herself", "not happy", not drinking well, but wanting to eat ALL THE TIME, shallow breathing, and racing heart.
We consulted with a hemotologist, and he determined it was all diet related. She eats like a normal 2 year old - but not like a 5 year old, and meat is difficult for her to chew.
So, the only way to fix this (without having to go thru the risks of a blood transfusion) is a high iron supplement 2X a day. He said it would take about a week or 2 for her to be feeling better, and about 3 months for her to be back to normal levels.
Well, it's been 10 days, and she is already much better!!!!! praise God.
however, the iron tablet is totally nasty!!! poor baby.
Surgery - not HER; but ME. I had carpal tunnel surgery on my left wrist. REcovery meant I couldn't lift the princess for 2 weeks. (very inconvienent, howerever; I have remarkable children and a husband who pitched in 100%).
I will have the right wrist done in September, when Suzy is back in school full time. I can't wait.
Suzy is going to summer school M-Th, from 8:00-11:00.
I think she is glad to have something fun to do those days.She loves school, and she has her same AMAZING teacher. praise God
I posted lots of pictures under: Tryke & Stuff- 2012
I pray you all are having a wonderful summer.
I haven't posted an entry in so long!!!
Everything has been 'quiet' in the Booze house. Suzy has been doing great - no news is always good news.
She is still lovin' school; and I am dreading the end of the year. School is her biggest source of entertainment.
It challenges her, excites her, motivates her, and gives her SO MUCH ATTENTION. Way more than she receives here at home with ME!
After school she has therapy 4X a week, and then a rest in front of the T.V., then snack at 3:00, then her sisters get home from school!!
It's a good day.
Suzy will attend summer school again this summer - same teacher (hooray), 4X a week from 8:00-11:00. This will give her a chance to continue seeing her friends and learning new things.
Next year we are going to repeat preschool!!! She is 5, so she is supposed to move on the Kindergarten; however, I just don't want to give up these teachers, and these children, and this environment! WE love it TOO MUCH.
But her principal has been AMAZING. She has approved for Suzy to stay in preschool each morning, and then the teachers will give her lunch, and then she will move on the Special Ed Kindergarten EACH AFTERNOON!!!!! How wonderful is that?
The afternoon teacher is also amazing (Miss Tara) and she has about 6 children between Kindergarten and 2nd grade (all VERY special). I think it's officially called "Severly Impaired"........ not sure ~ but Suzy fits the bill. I am beyond grateful that Princess Anne Elementary has gone above and beyond to make Suzy's education the best that it can be.
(and..... I will be without Suzy for the entire school day..... yes, i'm doing a little happy dance! I adore and love her ~ but I am ready, and so is she.......I hope.......We shall see.....)
Suzy's class went to the zoo. I posted pictures under PHOTOS-May 2012.
oh yeah, I also started my own little business. I love to bake ~ and baking homemade, iced, fancy sugar cookies has become a special love of mine.
I now create any kind of cookie you want for whatever event you are hosting!!
and you can find us at :