forming a support group

i am forming a support group here in savannah so that people with celiac disease can meet, help each other cope, share recipies and ideas, try new foods, etc.
the first meeting will be Monday July 14, 2008 at 6pm at the Hardin County Library.
the meeting is free and open to anyone interested.
for more information, send people to me at savannahceliac@yahoo.com
i plan to have the second meeting right around the time school starts and invite all the school nurses, principals, lunch staff, nutrition staff, etc and have experts on hand to help educate everyone on the disease.
if you know anyone interested, please forward this info to them.
thanks

mark and lacee

these two are so silly together!
they place and poke and pester and pick on each other all the time!
these pics are of mark "squishing" lacee on the seats at the play area at the mall.

going gluten free

i had planned on starting lacee on the gluten free diet right after her biopsy, but her doc said to give her one more week on regular foods, until the results from the biopsy were in.
i got the call today.
negative for h-pylori but there is noticable gastritis and damage from the celiac disease.
time to start the diet.
lacee is staying the weekend with our cousins in memphis, so we will make the change when she gets home.
i am copying and pasting some tips posted on a celiac board.
let me just say that my head is absolutely spinning!!


New pots and pans-exclusive for gluten-free cooking
New cookie sheet
New cooking utensils
New collinder
New cutting board
No using BBQ
New toaster
Complete scrubbing of the microwave
Own container of PB, Jelly, Butter
Squeeze containers of mayo and mustard
-Vitamins
-Toothpaste
-Shampoo
-Soap
-Handsoap
-Lotion
-lip balm
-gum
-mints
-sunscreen
-non-stick cooking spray (some contain flour)
-medicines
Art supplies must be checked
The entire kitchen needs a thorough scrub even things they may not think of like the sugar bowl
Pet food (if applicable) must be checked
Hand washing when taking child to public places
cleaning out their car
what are they going to say when other relatives & friends visit & want to bring in wheaty foods?
games & toys should be washed/wiped clean
wooden blocks to store butcher knives - the crevises will have gluten crumbs & you cannot get them out.
not only empty the sugar bowl & wash it - but the sugar canister as well - because it will also be cross contaminated if she bakes.
put any flour in double plastic bags & then in a sealed container.
change the air filters in the AC/furnace
change the vacuum cleaner bag/dust buster
Include the obvious spaghetti, cereals, breads, cakes & cupcakes, cookies, donuts, etc, but also things they might not think about such as pizza and ice cream cones. And always every kid's favorite, mac and cheese.
Remember: no Play doh
Use the dog poop analogy. No one would handle dog poop directly or indirectly without thoroughly washing everything. Anything that has ever touched wheat has to be treated the same way. An if you can't get it out, such as in the peanut butter or mayo jar, throw it out or at least quarantine it and get a new one.
dish rags
dish towels
kitchen towels
ziploc bags with the zipper, to store things and to take a box
"left over"plastic containers
pot holders
no knife double dipping in pb & jelly
candy/treats
toaster cover for the gluten-free toaster
seasonings
directions
Celiac books... she needs to read beforehand or she won't understand the importance
label everything gluten-free boldly
Wash TV/video games/computer controls/keyboard if needed
scrub fridge/freezer
grocery store sacks from grandma's...don't reuse or carry wheat flour from the store in them
wash grandma's spice/flour/baking cupboards/canisters/containers
scrub dishwasher/toaster oven/silverware trays and utensil drawers/oven
tell grandma its worse than head lice...you can't see them and they are "poisonous"
no cooking/art aprons
keep your child out of the kitchen/garage as much as possible
no table cloths/cloth napkins/placemats
horses? oats/grains/hay

home from surgery

we are home from mark anthony's surgery yesterday.
it was successful, he did great, and is recovering nicely.
he has been more sore and recovering slower than we had expected...but we can see progress.
they sent him home with pain meds, antibiotic, steriods, and ear drops. we are giving him malox to numb his throat before we give the meds. we gave tylenol as well the first night and morning as he felt warm, but tonight he didnt feel warm so we skipped the tylenol. it takes both mark and i to hold him down and force the meds down him, but it is getting easier each time.
we are very grateful to everyone for their thoughts, prayers, and well wishes.

ladies man

i love a mall that has a kids play zone.
and wolfchase is one of those malls.
we went tuesday, just to walk and look mainly rather than shop.
they have a carosel, which we rode, but they have an awesome indoor play area.
all three kids enjoyed it. lacee helped her brothers alot, mark anthony probably enjoyed the play items more than any of mine, but tommy had other activities.
he is a ladies man.
these pictures are so cute, and the main little girl after his affections got SO mad at her mommy when they had to leave. she also didnt like it when tommy decided to grab her hair to pull her closer. bless it.

tomorrow is surgery day

tomorrow morning, we have to be at lebhonuer childrens hospital at 6 am for mark anthonys surgery.
i have worried myself to tears today over the heart murmur issue. i called the ent performing the procedure, and his regular pediatrician, and several friends.
all the docs, and all but 1 of my friends, say it is nothing to be concerned about and that i shouldnt worry.
so, with a ton of prayers and huge hugs and kisses....we will have a successful, uneventful surgery tomorrow morning, and be back at the hotel tomorrow evening.

tooth fairy visit

the tooth fairy will have to come see lacee tonight (tuesday).
this morning a tooth that she had been working on the night before but couldnt get out just fell out all by itself. of course she is so excited.

who's the cover hog?

i have to laugh at this picture.
it is proof to my mom that she IS in fact a bed hog and a cover hog.
she likes to remind us all of how my children and i are bed hogs and cover hogs, while in total denial that we came by it honest---from her!
it is a sweet pic though, as rare as it is. this whole trip so far both lacee and mark anthony have wanted to sleep with mamaw. thats a first for mark anthony.
sweet moments to remind us of our grand blessings.

a 10 minute break

monday night mom and lacee left the pool with the boys before mark and i did.
we stayed in the hot tub together for about 10 or 15 minutes.
it wasnt long, but it was nice, peaceful, and relaxing.
a much needed break.
still, i found myself talking about the kids 90% of the time.
mark and i both agreed that just 10-20 minutes alone like that each night would certainly be a nice stress reliever.

pool time fun

we are loving the pool and hot tub here at the hotel!

chucky cheese on crack!

oh my goodness!
we went to a wonderful place on germantown parkway called Ultimate Pizza.
and ultimate it is!
every person who comes in has to purchase the buffet to enter. on mondays kids are only 99cents, so we got lucky on lacee, and both the boys are free. so for 3 adults and lacee at 99cents, it was $30 and some change. which was an awesome deal. there is pizza of every kind, desert pizzas, cobblers, ice cream, smoothies, icies, pasta, cajun rice and beans, baked potatoes, salad bar, and fountain drinks of every kind.
there are 4 different dining rooms to choose from, and a separate party room. the dining rooms are each different themes....a 50's diner, a family room (looks like a living room), a high school gymasium (this is the one we chose), and a movie theater.
you purchase a credit card type thing, for 25cents each, and put money on it. we got one for lacee and one for mark anthony and tommy to share.
and the coolest part, you cant see the fun stuff from the eating areas!!
so after you get your belly full, you go play. it is amazing the things they have. rides, games, bowling, bumper cars, go karts, glow in the dark mini golf, etc etc.
it was wonderful!
clean, nice, fun, wonderful staff, etc.
several of the games give tickets, so then you end with the parents least favorite part...cashing in the tickets for the prizes. but several of the prizes are decent at decent amounts.
i took tons of pics, of course cant get them all on here, but will share some with you.
this is definately a place i would recommend to anyone, and we will certainly visit again and again.

a sweet surprise

after the appointment with the docs, mark anthony and i headed back to the hotel.
when we walked in the room....guess who was hiding in the bathroom??
MARK!
he had rescheduled his moms doc appt without letting hiim know. i wasnt expecting him to join us until late tuesday night or early wednesday morning.
what a sweet man, to sneak up and surprise us!

heart murmor

during the visit with the anesthesiologist, he listened to mark anthonys "engine" and said, "you know he has a heart murmor?"
umm, no!
he told me that he does in fact have one, he can hear it.
"should i be concerned?" i asked, knowing that no matter what his answer was i would worry.
he told me i should mention it to his pediatrician at our next visit so she can monitor it, but that it seemed to be beneign, and it didnt seem to be bothering him right now.
SEEMED TO BE BENEIGN??
MONITOR IT??
not bothering him RIGHT NOW??
so that leaves the possibilities that it could NOT be beneign, that it could start bothering him at any time, and that his doc needs to be watching it??
course if you know me well at all, you know my mind is racing, thoughts swirling, heart pounding.
what really bothers me, is the question...why has this not been discovered before now? its not like any of my kids are three-times-a-year-doc-visit kids. we are more like once-or-twice-a-week-doc-visit family. he has seen 3 awesome pediatricans in his almost 3 yrs. he has seen several specialists. tons of nurses. they all listen to his "engine". every time.
mark tells me not to worry, its very common, tons of people are walking around every day with heart murmors.
but my kids arent supposed to be in that group!

elevator rides

mark anthony loves the elevator here. it is clear on one side, so that you can see the hotel lobby. of course he has to be the one to push the buttons. we are on the first floor this time, but the ride is still required. up to the 5th floor, and back to the 1st. mom rode with us once, green as a frog when it was over. this is the same mom who cant even ride a merry go round or ferris wheel.

i attempted to get pics of the view, but they turned out even worse than those shot through the fence at a ball game. here is a pic of the happy rider. i am also including pics of the lobby.

breakfast buddies

this hotel offers an amazing free breakfast. this is the same hotel we stayed at last trip to memphis, the embassy suites.

today, mark anthony played and played with a little boy, tristan, that he met last night in the gift shop.

they jumped and danced and ran and hopped. they did manage to sit down for a FEW minutes to attempt to eat apples, and i grabbed these quick shots.

after breakfast, mom, lacee and tommy stayed at the hotel, as mark anthony and i made our way to the pre-op appointment. while we were there, he made friends with a little girl named maya. she is also having her tonsils and adeniods taken out wednesday, so hopefully they will get to play again together then. i didnt have my camera with me on the trip to the doc.

it is so neat the way kids can meet and instantly become best friends, playing and laughing as if they had known each other for ever. social status, geographical location, clothes...nothing else matters. just a smile and a mutual agreement to be friends is instantly made.

God tells us to be like children. I do believe this unbiased acceptance of one another is one example of that.

swimming fun

we are in memphis, mark anthony has a pre-op appointment tomorrow, and surgery wednesday.


we had supper at macaroni grill and i was pleased to find out that they have a gluten free menu!!


there isnt a ton of options , but there are several.


after supper we came back to the room, and got in our swimming clothes. just as we were about to walk out the door, lacee called, she was at the hotel to join us. (she had spent the day with donnie and debbie at the zoo!!)


she got ready, and off to the pool we went.


i snapped a few shots, afraid to get too many as there was alot of splashing going on and my camera is not waterproof. mark anthony made a new friend, ryan, at the pool, and tommy enjoyed flirting with ryans 4 month old baby sister!! i was so glad to find the float that mark anthony had as a baby, tommy definately is enjoying his turn with it.


mark is still in savannah. he has to take his mom to the doctor tuesday, and then he will join us here. we are missing him, and he is missing alot of fun!