HELLO SOUTH HUNTINGTON SCHOOLS!!
And to all of our
“I Can do it! With Grace “FIVE-EACH-DAY” Game Participants!!
Everyone is buzzing about our new Five Each Day game!! Our thanks go to Kathy Zadrozny, the Health and Welfare Committee, Charles McTeirnan,Jacqueline Harris, Debbie Tortorice, Jen Cowie and all of the school secretaries that helped with the program!! Also to Lee Ann in Charlie McTeirnan’s office for all of your help (you are an unsung hero!).
Our next fundraiser for Grace for a Cure will be in June or September (we are still working on nailing down a date). Please visit back soon to see our newly renovated website and for more information on our next event. Grace for a Cure events are fun for the whole family and you get A LOT of “bang for your buck.” We have a live band, activities for children and adults, Outback usually comes and BBQ’s for free, and much, much more!! Kids are FREE.
Mention that you participated in South Huntington’s FIVE EACH DAY program at the registration table at our next event and you will get a special little recognition gift!!
Please e-mail me, Joan@graceforacure.org with any comments or questions about the game!! We will be selling this and other school programs to help to promote children’s well being. Keep checking back for more info!!!
Joan
February 12, 2008
Grace is 7 years old now. She still loves television and food. We now have a full-time babysitter for Grace, her name is Jenn. Jenn is like a big sister to Grace, and takes great care of her (she's actually helped us for over a year now). She feeds her, plays with her, and takes her for walks, giving Joan and I a break to spend more time with Julia and each other. Jenn is a great with Gracie's hair as well, she gives her fancy hair styles all time - picking out great outfits for her, making her look really cute. THANK YOU JENN !!!
Because of the oral fixation that comes with Grace's disease, she constantly puts her hands in her mouth. This is not a good thing, at first we didn't realize it was a problem until she developed sores between her fingers. She would also chew them until they bled. Grace now wears medical wraps that go from forearm to bicep keeping her arms mostly straight, making it very uncomfortable for her to keep her hands near her mouth. They work great and she seemingly doesn't even realize they are there.
Another struggle has been Grace's sleep pattern. Sanfilippo Syndrome causes her to be wide awake in the middle of the night at times, we now have an aide that comes every night from 11pm to 7am to keep an eye on her at all times making sure she is safe - good thing I have great medical benefits at work.
We are changing Grace's school again. Sanfilippo is very rare and leaves kids in a rare place school-wise. Most of the schools in our area accommodate autism and less aggressive forms of special needs. Grace is very social, happy, playful, etc - but can't really learn things that kids ages 4-12 with basic special needs can learn. For instance, she was in a class recently were they were teaching the kids to bake brownies - or if ever on fire, to drop and roll. Grace could ever understand things like that, I'm sure she ate the brownies though. Joan has been doing a great job at working on the whole school hunt for Grace over the years and making moves as needed.
I discovered a way to steal kisses from Grace (since she doesn't know what a kiss is or how to do it). I put a broken cookie on the edge of my lips, her arm braces restrict her from grabbing it so she comes in with her lips and pulls it away. Hey, it's the best I can do... Next I need to invent something for a hug. It hurts to have never been hugged by Grace, although Julia makes up for it with our "super hugs".
- Dad
May 14, 2007
Well, we are a few years into this thing now, Grace is 6. She is a happy girl. She still loves television - Power Puff Girls, Little people, Elmo and Pooh. She still LOVES to eat, and will eat almost anything. She has been healthier as well, less ear infections and colds this past year. Obviously no cure yet, but we keep praying.
- Mom and Dad
March 3, 2007
Grace has been sleeping in a crib all along, we can't put her in regular bed because she gets out and can hurt herself, just locking the door is no good either because she gets out of the bed and pulls on the doorknob and wakes the whole family up. A personal friend, Glen Wolter built rails on a 4-poster bed for her. Our problem is solved and Gracie is very happy and comfortable in her new custom bed!! Thank you Glen!
- Dad
December 23, 2005
I updated the site myself for the first time! My website master Martin, (Sarah's husband - you can read more about Martin and Sarah on the boards) is away on military assignment and has had no internet access (hence the break in updates to the site). After a few instructional emails, and a long conversation with Martin (who's in Alaska) I am now able to update it! On the boards the other day I described a Grace Kiss - I think I will add it as today's update;
A Grace kiss needs to be defined at this point, there is a whole process to it. It starts by saying "Gracieee, gimme a kiss - Gracieeeeeeee.., gimme a kiss". Then ya get down on one knee. She looks up at you knowing what you want, but is reluctant to do so a little (for the record Joan gets millions of more kisses than me). Then she either runs away (no kiss), or leans into you with her mouth sort of open with drool coming out and lays one on you making a sound. Now, it's not really a kiss because she doesn't have the motor skills to pucker and really kiss. However it's her way of kissing - and that means a lot. They are wet and slobbery and germy, but it's worth it.
I almost got one this morning, but she ran off. When she runs off, I chase her down and kiss her on the top of her head.
- Dad
August 15, 2005
Grace has a cute little circle that she makes outside. She goes out the back door on the deck, over the bridge (we have a little bridge that goes over a koi pond) takes a right, then comes up the other side of the deck and around again. She does it many times in a row and likes it. She also loves the pool, when Julia jumps in she gets excited and screams. She likes putting her feet in the water, then getting in and out over and over again. She also loves turning the pages of books a lot lately.
- Dad
June 20, 2005
Grace actually goes into her bed and goes to sleep on her own now. It's is very funny - at this point she doesn't know very much and can't speak, so when she gets tired off she goes. The house gets unusually quiet, we run off to her room to find her snoring away. Yesterday was Father's Day and the girls made me some great gifts at school that I am thankful for - really cute stuff. Grace is getting big, closing in on four feet tall. She's getting really heavy too, she has pretty much graduated from regular diapers found in stores in perfect time. The county now provides extra large diapers going forward - yay!
- Dad
May 20, 2005
Last Sunday Grace graduated from her crib to a nice little toddler bed. We were a little nervous about it, the crib was like a little home for her and change is not always welcome with Grace. Well, she loves it. At bedtime she runs over and climbs right in and stays there all night, sitting up in the morning and waiting for us to get her. She is so darn cute. Grace is a big girl and lifting her in and out of that crib was getting tough. Thank God for the smooth transition.
- Dad
May 3, 2005
Grace has been really cute lately. Her new thing is running up to you while you' re doing something else, and leaning towards you looking directly into your eyes. She will continue staring at your eyes until you make eye contact with her. Once you make eye contact she becomes satisfied, smiles and goes back to watching television or whatever it was she was doing before coming over.
- Dad
April 27, 2005
The winter season is over and Grace is feeling great these days, the ear infection is gone! She's been extra happy and laughs really hard when we jump off the couch in her direction. We are in the process of looking for a good school for Grace for this Fall, she will be five in November. There are several nice schools in the area that can help her. The family is at Woodloch Pines this week relaxing and enjoying some time away. Julia and Grace are playing with their cousins, there is a huge indoor pool that they love.
A bunch of people have asked us how Julia is dealing with Grace's situation - so we'll add it here. Julia is Graces' six year old sister not affected by the disorder. As it stands right now, Julia knows that Grace has a "disease" which to her means a cold that won't go away. Before we got the diagnosis, we thought that Grace may speak some day, now we are pretty sure she won't. Julia used to pray that Grace would talk and would hope for it often. We recently told her that the doctor's say she will not talk, and she accepts it. I just asked her what she thinks about her sister being different. She said, I'm not happy about it because I want someone to talk to. A truthful answer.
Overall, we are determined to keep this a happy house...Julia and Grace are given equal attention. Julia has no idea of the extent of what the future brings, and we see no reason to tell her. Some day we will, but that is a long time away. We will seek counseling on this issue. It is true that Grace can't speak, makes funny sounds and has a quirky way of running around, but these are the exact things that make her who she is. Grace's actions bring this family a tremendous amount of joy, laughs and a unique kind of peace that can't really be explained.
We believe that Julia is a better person because of Grace. So filled with love and compassion. And that's a beautiful thing.
- Mom and Dad