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Kelli’s Report
This weekend Mike, the girls and I had the opportunity to spend the weekend with some of Michala’s Aicardi sisters and their families. We got to meet a couple of new families. We also got to see some very special friends that are truly like family. Where to begin to tell you about the weekend I am not sure. I was nervous that something had been forgotten, something would go wrong or something, but it was perfect. If it wasn’t perfect the love, caring and sharing that went on this weekend covered it up. It is wonderful to be with other people that see the blessings that these special girls are. They also understand the trials we are faced with daily. It’s amazing to see a daddy hold Michala while she is having a seizure and have all the patience in the world. It’s wonderful to see everyone pitching in to help, hold, love and nurture each child. It’s comforting for someone else to sit with your child while they are having a seizure. Having a seizure is the “norm” (whatever that is LOL!). You may hear another person say oh she is having a seizure. Instead of getting stares, you get questions like how often does she have them? How many a day? How long do they last? What meds is she taking? What do you do when she has one? What can I do? How can I help? It’s good to talk to others about meds and things that are working for them. It was held at Stone Mountain, Georgia. We had 7 Aicardi girls and their families. Most of us arrived Friday night to have dinner together. It was truly like walking into a family reunion. Words cannot express it.
Saturday, Mike had school so Sara one of the other Aicardi mom’s helped me get the girls down stairs for breakfast. Some of the families headed on to the mountain to check out some of the activities. Some of us just hung out at the hotel and visited. There was one Aicardi sister that came in that morning just for the day. Pam, one of the Aicardi mom’s suggested that I tell the new mom about Michala’s amputation so that she didn’t think it was part of the Aicardi syndrome. I told her about it and then we all started talking about other things. In a little while the mom asked what Michala’s foot looked like. After I told her she asked would I look at a place her daughter has. She started taking off her daughter’s right (same side as Michala) shoe and sock. I had to stop and catch my breath before looking. It does look similar and it is growing. Thankfully we discussed it. The mom will be calling the doctor.
Saturday night we all had a wonderful picnic provided by “FORE” Morgan fund. I forgot to tell you about the wonderful meal Kevin Clement’s mom Joy cooked for us Friday night. It was so good! After our picnic we had some time to visit with each other before seeing the laser show.
Sunday morning we had breakfast together before heading our separate ways. It was truly a wonderful weekend. I would like to thank Angie Thibodeau, Sara & Kevin Clements, Pam Drake and my wonderful husband Mike for making all this possible. Ya’ll are great!!! The Tibodeaus gave all the children those wonderful cool ties. They are great! They also gave each of the angels a very cute teddy bear. The Clements gave each family beautiful angel ornaments and wonderful soft coolers. Which has already gotten lots of use from us. Thanks so much ya’ll for everything!
After we left we stopped by the mall to finish off the weekend. We had a great time just walking around seeing all the sites. Yes, I got my Starbucks fix! No thanks to Kevin! LOL!!!
Hope everyone had a wonderful weekend! I am sending a link to some pictures that I took on Saturday. The pictures from Friday have to be transferred from another computer. I will try to send those out tomorrow. We found another one of Michala’s twins. It’s Brianna Henderson. They really look a lot alike and have very similar mannerisms. http://www.shutterfly.com/osi.jsp?i=67b0de21b326f707a4a7
Love, Kelli
Pam’s Report
Kelli gave such a great overview of our wonderful reunion for the SE region in Stone Mountain, GA this past weekend. We had such a relaxing and enjoyable time with everyone that attended.
Hannah (but not her parents, of course–HA!) was the “oldie” of the group at age 12! Even with just seven of our girls in attendance, we represented a huge range of not only ages but abilities…
Hannah was a bit more subdued than her usual, but enjoyed the companionship all around her and loved her swim in the outdoor pool. Morgan’s Grandma Joy’s baked ziti and the coconut cream pie were huge hits with my girl! She stayed awake through the entire laser show shown on the mountain and was singing and boogying up to the end at 10:30!
Michala was so loving and frequently went up to any available and willing body and begged to be held. Needless to say that much of the conference Michala spent in the arms of an adult! My Dad is a retired vocal music professor and enjoyed singing to her as she attempted to match pitches with him, and my sons got a kick out of watching her signing for more breakfast!
We didn’t get to spend as much time with Logan as the other girls because she had a “reunion weekend within a reunion weekend” when her parents, Grandma, Aunt and Uncle all went camping with her at the Stone Mountain campground! When we were with Logan, however, her sweetness came through loud and clear. We even lured her into a nice picture (not yet posted) by taking away her beloved pacifier which we then used to get her attention on the camera! (We can be such a tricky bunch!)
Morgan wowed us all with her serene, angelic beauty. No one could resist stroking her beautiful curly, red hair. Once I found out from Sara that Morgan sees best when her eyes are looking straight up, I frequently observed her checking out our group in her own unique way.
Brianna was walking and running all over the place exploring and playing with all of our children, a toy, or one of the members of the entourage that attended with her. She brought her parents, grandparents & Aunts for a total of seven people to dote on this adorable little girl! We were flattered that Brianna spent her second birthday with all of us!
One of our new girls is Jarynn. Not only has she NEVER had a seizure, but she is so mildly delayed that had we not known that she has A.S., we wouldn’t have guessed. Her Mom, Moshaunda, said that Jarynn is typically very slow to warm up to strangers, but she must have known that we are her “family” because she couldn’t have been more outgoing if she’d tried! She loved to play peek-a-boo with my sons and when we Moms heard her say, “Mama”, unrehearsed, in unison, we all sighed, “Oooh!” and then giggled amongst ourselves.
Jayla was our other new addition and came with her parents, grandparents, big 3 year old brother, and 3 year old cousin. She also has never had a seizure and is truly “S.N.A.P.” (Sweet, Neat, And Petite!) at 15 month. She has the softest skin and eyelashes so long and curled like she had used an eyelash curler!
Kelli modestly forgot to mention that she gave each of the girls a pink and purple beaded bracelet. They are so pretty–you can see Hannah wearing hers in pictures #1 and #97 on the Shutterfly site where Kelli posted her shots.
Angie made and decorated a lovely sheet cake for us to enjoy during our picnic at Stone Mountain while we waited for the laser show. You can see the cake (and Angie!) in a few of the photos, too. What a creative bunch~
I can’t express how much we all appreciated the efforts of Angie, Sara and Kevin, and Kelli and Mike for all they did to make this such a success. The “Fore Morgan” golf tournament fundraiser paid for our group dinners and the conference room rental for Saturday, which was a true blessing. I left so proud to be a part of this group and to have found such a wonderful circle of friends so share in life’s ups and downs. Now my batteries are recharged until the conference next summer!
Pam Drake
Sara’s Report
Pam and Kelli said it all. It was a wonderful time that was had by all. I am reminded of how many close friends I have made in 4 short years. I may not get to see my family often, but when we get together, it’s just like meeting an old friend. Everything picks up right where it left off last time. It is truly comforting to get together with everyone like that. It’s so nice to actually see the people we talk with over the computer everyday.
I will say that Ethan and Jared Drake (as well as their grandparents) were a huge hit with Bonnie. They were a blessing when it came to entertaining her. She had so much fun with them. They were extremely well-behaved boys–I was impressed. They were able to entertain each other and all of us. We sat by both of the boys during the laser show and they loved it. After every song, Ethan said “OOh, that was my favorite!” We had so much fun–even with the heat!
The only downer (in my point of view) was breakfast on Sunday morning. Morgan got sick. I did take her to the doctor on Monday and we found out she has impetigo. The spot that we noticed behind her ear on Friday night was the blister that had popped. That is why she was running a temperature Sunday night and probably why she got sick on Sunday morning. The bad news is that it is contagious–the good news is that it was behind her ear where most people wouldn’t have touched. I hope nobody gets it! The doctor said about a week after you’re exposed would be when it could show up. So, those of you in attendance be on the look out for any blisters–that’s the initial sign of impetigo–UGH!!!! Sorry to all about that!
We had a wonderful weekend and we can’t wait until next summer for the national conference!
Love to all,
Sara (Morgan’s mom)
To see the itinerary, click here.