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.
September was a good month for our family. The girls have all adjusted to their new schools and teachers.
Suzy and Pre School have become a perfect match. I am 'crazy happy' about the whole program. She has 3 beautiful teachers that love her! (what else could a mommy want?). She also has 3 different therapists that seem very eager to help her achieve her maximum potential! The children run up and embrace Suzy when she arrives, and they LOVE to help her throughout the morning. I heard that there are even 'arguements' over who gets to push Suzy's wheelchair or sit next to her in circle time. She smiles each morning when we enter the school.
The rest of her day has also settled into a nice routine. She comes home for lunch, and then off to various therapies. She has PT at 1:00 on Tues., Wed., and Thursdays. She has OT at 2:00 on Wed. And, she has Conductive Education Therapy at 2:00 onMond. and Fridays.
By 3:00 each day she is DONE! She wants to relax in her recliner, watch Dora and have a snack.
We have an appointment next week to check out a NEW therapy - Vision Therapy. We are getting an evaluation with a Developmental Optometrist, and hope to start having treatment once a week with him. I would LOVE, LOVE to improve her cortical visual impairments. Good vision/crappy vision effects everything - balance, head control, cognitive development, and even the way the world treats you. When Suzy looks right at a person who is speaking to her she gets treated differently then when she is gazing off into space. She appears more 'with-it'.
Suzy goes everywhere with us - grocery stores, restaurants, malls, multiple trips, the other girl's schools, etc.
I like taking her. It feels right.
Lately, Suzy is attracting more attention. Probably because her new wheelchair really looks like a wheelchair and not a stroller, and she looks much older (she's lost the 'baby' look).
Children and adults are staring more and more. I don't mind!! I really don't. Why not? - I guess because I am just like them - I like to look at other people and situations. I'm curious. I'm nosey. I love to eaves-drop. I will crane my neck to 'check people out', or gawk at an accident. I like seeing new and different things.
I know that is why people stare at Suzy. She is different. She is in a wheelchair. She is so stinking cute! They are wondering what's wrong with her. They are curious. And they feel sorry for her (and us).
I don't mind people looking and I love people talking to us. But, I am tired of the 'pity look'. They look at her, they look at me (but avoid my eyes), and they give that crooked, pitiful smile. I can hear them saying, "awe....what a shame....how sad...."
I am over that.
I really don't want any pity.
I admit - I used to want it.
I craved sympathy and pity.
I wanted the whole world to feel sorry for me.
I used to look at Suzy and see her DISabilities. And ONLY her DISabilities.
I have changed.
Now, I look at her and just see: my child.
My wonderful, beautiful third child. I see her smile and I see her A-bilities.
I know her inside and out, and I am so used to all of her 'differences'. She is just my daughter. My job is the same with her as it is with my 2 other 'normal' daughters - help her become the best she can be, and feel safe, happy and loved!
Without a doubt, she is much harder to raise than a 'normal' 3 year old. Getting through a day can be completely exhausting, both physically and mentally. (But that's why I have help and why I'm so excited to have a school that she can go to for 3 hours a day!!!)
But at the end of the day, she is just another one of my daughters - all talented and amazing in their own special ways.
She is happy, and healthy, and thriving, and so very loved. She puts a smile on all of our hearts - and that's why nobody needs to feel sorry for us.
We are the lucky ones. We get to have her in our lives (even if we are completely worn out and have bags under our eyes).
I added pictures under PHOTOS-Septem. 2010.
And last week I added a video under VIDEO-
Suzy starts preschool.
I pray that you all had a great September, and that your kiddos are adjusted to school.
Letting go ~
Chris and I spent yesterday taking the 3 girls to 3 open houses at 3 different schools. AAhh!! School starts up again on Tuesday.
I'm sitting here, sipping my rum and diet coke, and processing it all. I am going from excited, to nervous, and back around again.
Maggie - she's the easy one. She is going off to third grade at New Castle Elementary. We love the school and love her teacher. She is thrilled.
Gracie - she is heading off to Middle School! I'm sure I'm feeling like every parent feels when they first send there child to middle school ~ Where did the time go??? I can clearly remember her learning to walk and sucking the life out of her pacifier. It seems like yesterday - but it was 11 years ago. Now it's time for pimples, bras, and peer pressure. Gracie is super excited and totally ready for this new chapter of her life.
Suzy - this is the one causing me the most stress. She is going to Princess Anne Elementary school. Yes, that is correct ~ I am sending my 3 year old, handicapped, non-verbal, sensitive, fragile child to an elementary school. Yes, I feel like I am going to throw up.
The cily's Special Education Pre-School is housed in a regular elementary school. And she will be going everyday; but just from 8:30-11:30. I observed the class back in June. I really like the teacher, Mrs. Wright, and the assistant. I liked the format of the morning. Suzy will have 10 other children in her class. They are all between 2-4 years old. Her class has 8 kiddos with various special needs, and 2 kiddos who are 'normal' that are participating in a 'reversed mainstream' program. Suzy will definiately be the most severly 'involved' child. She is the only child who can't walk. But, I am hoping that this will be a wonderful setting for her. She will have all of these children to look up to, and learn from, and who can help take care of her and play with her.
She will also receive PT, OT and Speech twice a week. The class has center time, computer time, snack, group therapy, and they go outside everyday.
I am super worried.
I am trying to 'let go' and let God guide us through this. I pray that she will adjust and really love it. I know the first couple of weeks will be hard on both of us.
I'm feeling sentimental, and therefore posted this picture. It's from 3 1/2 years ago ~ the day we brought Suzy home from the hospital. So much has happened since then. So much has changed. So many hopes and dreams were destroyed.
However, it's time to focus on the new chapter in our lives. And dream new dreams. And appreciate all of the wishes that are coming true.
I pray that all of your children had successful returns to school and are feeling happy and safe in their classrooms.
I am loving Suzy's feet.
Why? (besides being so damn cute?)
Because they can actually BEND!! Look at the pictures. Her feet are bending at the ankles all by themselves.
We LOVE Botox!! Thank God for botox!
BB (Before Botox) her feet always looked like 'ballerina feet' (pointed, and also turned inward ~ a common side effectof brain injury due to spasticity).
AB (After Botox) she is bending them, able to wear her feet splints (which she hasn't been able to), and her feet can now rest properly in her wheelchair.
She is much more comfortable (obviously). And this "release of tension" seems to cause her whole leg to bend and move easier.
It didn't work last year when we tried (she probably didn't get enough of it to do anything).
Suzy has been working with great new PT this summer. She showed us how to put Suzy in a corner with one leg bent, and she is able to sit like that for hours!! (all by herself)!! The PT also has Suzy working at holding onto 2 things at one time!! (before, she could only hold something in one hand at a time...too much brain activity involved when working with both sides of the brain.) And she is finally starting to rolll a little bit. Woo-Hoo
Good Times. Good Progress. Good Summer.
I added pictures of all of this news under - PHOTOS-Aug. 2010
Yesterday Suzy went to Children's Hospital and had her Botox injections. She did great. She got 8 shots (in her calves and right hip area). The Botox will basically interrupt the signals from her brain to those muscles so that she can't contract them as strongly. This should help release some of the tightness. She will go next week to have new AFO's fitted for her feet.
We also went to the Wheelchair clinic this week. They re-adjusted her new Wheelchair, fixed her Stander, helped me position her in her KidWalk Walker, and fitted her for a NEW CARSEAT!! She is getting a Special Needs carseat. I am very excited. Right now I have to put her in a regular carseat, and then I shove towels around her to help hold her up correctly. This new seat has built in side and head supports. I can just plop her in... and go!
The past few weeks Jenny and I have been working with Suzy on SITTING by using a Balance Board. Suzy sits on it, and we are able to tilt the Balance Board to help her stay up, but by not having to touch her body. She started out by staying up for just a few seconds. She is now staying up for 2 minutes. She is starting to pull her own trunk up when we ask her to, and to use her arms to help reposition herself and push herself up. Yes ~ totally AMAZING. I couldn't be MORE PROUD.
This is very hard for her, and takes a lot of work.
My sister filmed her yesterday. The video is posted under VIDEO-Sit...Sit...Sitting.
Be warned, the video is a whole 2 minutes long. (I wouldn't blame you if you are too bored to watch the whole thing.)
I posted a 30 second video, because it was just so darn cute! It's posted under - 'Video-Laughing With Daddy'.
Today Suzy had an appointment with Dr. Lesher (her doctor of Rehabilitaion (a physiatrist)
We went over her little body from head to toes:
1. head - her head has grown another half a centimeter! Great news!
Bad newss - her muscle tone is TIGHT!!! Not actually "news", but it continues to wreak havok on her body. Her brain injury causes the connections to her muscles to "over-fire" which causes spasticity. Her main diagnosis would not be spasticity, because she is not always tight (good for her); Her proper diagnosis is dystonia (fluctuation in the tone due to posturing.) Dystonia's "positive" effect is that there are certainly times when her body can relax and get out of the tight position. Dystonia's "negative" is that it is much harder to treat with medication.
Her dystonia and mucle tightness is what is causing all of the following problems:
2.spine - we had another x-ray (it had been 5 months), and her scoliosis ( S Curve) is holding at a 13 degree curve. No worries. For a child who can't hold her trunk up this is to be expected, and it's hardly worth mentioning (yet). We will x-ray again in 6-9 months.
3. hips - her left hip is 40% uncovered, and her right is 25% uncovered. Still no change from 5 months ago. We will continue to watch, pray, stretch, and position appropriately.(Her periods of dystonia actually pull the hip out of the socket.)
4. WindSwept Legs - her legs get pulled to the right due to her brain telling her right side muscles to contract. So, there is a constant 'pull' going on. It hasn't gotten much worse, but it's also starting to cause her right hip to twist outward. Dr. Lesher wants to shoot some Botox into some muscle? and see if we can relax it a bit. (I'm not so sure about this, but I'm willing to try.)
5. Ankles (calf muscle) - again, they are so tight!! We are still able to bend her ankles into neutral position (but just barely.) Her brain continues to fire off signals telling her feet to point (like a ballerina) and turn slightly inward. It helps to wear her orthotics. We have tried 5 different orthotics and can't find a pair that fit her without her posturing out of them. Her toes fight hard and still point and cause her ankle to slide up the orthotic. A proper orthotic could keep her foot in the correct position, thereby stopping a contraction of the muscle. Solution - Dr. Lesher wants to shoot Botox into both legs, and stick her in a new orthotic.
Problem - My 3 alternative therapies (Medek, ABM, and Conductive Ed) are all AGAINST botox and AFO's (Ankle Foot Orthotics). The medical community and the typical PT's are FOR this treatment.So, what do I do?
We have tried Botox twice last year. I don't know the answer. So, as of now, we are going next Wed. to our local children's hospital for the botox! (both legs and the right hip) and then we are going back for another pair of AFO's.
5. Baclofen - we use it to try and relax the muscles. It doesn't really help her. We have tried the maximum dose and not seen any differnce than when she was on the half dose. Bummer. It works well with some children.
6. Her GI system is great! She is eating really well. She continues to gain weight (too bad for me and my back.) She now weighs 37 pounds and is 36 inches tall!!!!!!!
7. Sleeping - Her sleeping has been stinky lately. For about a year we have blessed with pretty good sleep. She falls asleep in my arms at about 8:30, I put her into her bed, and 75% of the time she stays asleep until 8:00.
But not the past couple of weeks. She is up several times (for hours) and HATES to be put back into her bed. She wants to sleep in our arms all night. Dr. Lesher said that part of this is just behaviour (spoiled rotten and trying to get her way), and part is that she is outgrowing her 'sleeping cocktail' (20 mg of Baclofen, half a Benedryl tablet, and .05 mg of Clonidine). She has put on 5 pounds, so we are going to increase these meds slightly and see it that helps.
8. Positive note - Dr. Lesher thinks Suzy looks great. She said that she is continuing to make good gains every time she see her. She said that for someone with Suzy's severe brain injury she is doing better than expected, and that we should continue doing all that we are doing.
I just wish there was MORE we could do. I feel dissapointed when I think about the time, energy and money we have put into treatments and therapies these past 2 years; and then look down at my beautiful palsied girl whose body is becoming crippled and deformed by her own brain. .......sigh.......I know God didn't cause her disabilities and pain. Encephalitis did that. And I know He is leading me through this journey. I just wish His guidance was a little more clear and direct.
Thanks for checking in on us.