Thursday, October 14, 2010

Appt update

First thanks so very much for the prayers! Nice to read emails on the way to the doctor to keep my mind busy when Mike is on work calls.

Well he decrease Michala's VNS cycle. She is still having 2 seizures a day. Some are pretty violent & they last any where from 2-20 minutes. Once again we accept they fact that she is going to have them. It's about quality of life. She had gained 6 lbs in 3 months & Dr. Flamini was very pleased with that. It's that cheeseburger diet he put her on.

Ok so for our little complex buddy. He did not adjust his VNS because he didn't want to throw something else in the mix. He wants him to have a CAT scan to make sure there is nothing there putting pressure on his brain. We are going to try melatonin & then clonodine. In other words who knows?! At least we have options to try.

Our big excitement came when the fire alarm went off & Dr. Flamini about fell out of his chair. We had to be escorted down the elevator by security. We still don't know what happen. We were only told that it wasn't a drill.

I am tired & I know this email comes across as negative. I don't mean to be! I am thankful to have a doctor who cares about our children & mine & Mike's well being as well.

Thanks again for all the prayers!!!


Michala & Abe's appt

Michala & Abe have appts today with the neurologist. Would ya'll please pray for a safe trip? Also would you please pray that the doctor has some answers, suggestions or directions for Abe's non-stop crying. I am honestly not ready to accept that it's neurological & there is nothing we can do for his screaming literally from sundown to sun up. I feel very helpless & it hurts my heart! It is wearing on my nerves & it's exhausting. 

Monday, October 04, 2010

Abe's appt at Shriners

Well we are heading home from Shriners in Greenville. Everything went well. They said we could try the AFOs to see if they keep his clubfeet from turning back in. We will also keep a close check on his scoliosis to make sure it doesn't curve too much or too fast. Thanks so much for the prayers for safe travels & a good appt!

Sunday, October 03, 2010

Camp Sunshine - WOW!!!

WOW!!! Even that word does not begin to cover this weekend! WOW! Just WOW!!!

We checked in at Camp Twin Lakes around 6:45 Friday night. We had time to get settled in our cabin before meeting everyone in the gym. I had gotten in touch with several of our friends that might be there this weekend. All of them said no. Not one single one of the families we were going to know. It nice to have to comfort of familiar faces but I have to tell you I was excited to get to meet new families.

We walked in the gym & immediately Marlee Anne saw friends she had met at sibling camp this summer. Right away we met a very sweet family from Griffin who Marlee Anne had been at sibling camp with the sibling Rylee. Then we met our camp doctor for the weekend. Well actually we met her daughter Shay age 3 who volunteered to help with the girls & Abe for the weekend. Just precious!!!

Mike met Jacob & after we met back up he was telling me all about him. Well Jacob was someone I had to meet. As I was doing meds this mom came up & said I have never seen so many meds & Jacob has a lot. I immediately bonded with his mom Heidi & got to meet Jacob. They love Disney as much as up or if possible more. She & her husband were married at Disney. Remember that's my dream. Well ok not marry but renew our vows on our 25th anniversary next year.

So we had our snack time which consisted of pasta salad, wraps, chip & way more than what a snack should have been. That's when it hit me I bet my long time friend MaryAnne's husband, who is the new chef at Camp Twin Lakes, must be there. So I headed back to meet him. Sure enough he was there. I have to admit he has changed the definition of camp food. He is absolutely the sweetest thing ever too. I wouldn't expect anything different for MaryAnne though.

Justin, who I found out this weekend is Jon's brother, played & sang for us. I was really doing ok until he sang Love Is. It made me think of Jon & remember Tyler Musslewhite. Then all of a sudden I looked up & remembered sitting at that same table the last time we were at camp with Tyler Copley. Wonderful memories that tugged deeply at my heart.

Marlee Anne was playing twister with a friend, Mike & the double chair headed back to the room while Mary Elizabeth & I finished up.  As I was sitting there someone put their hand on my shoulder. It was our friend Holly who volunteers. It had been 4 years since we had seen her. I was so excited to see her & cried & cried.

We head to the cabin & as we are walking there we see the most incredible night sky ever. WOW!!! The sky is actually filled with millions & millions of stars. For those of you that don't get to see those that often because of the town or city lights, they are there. I promise!!! Twinkling away to let us know that those that I have gone on before us & that mighty God of ours is still in control. How awesome to know that he placed each one in just the perfect spot.

As I was getting everyone ready for bed Mike & Marlee Anne walked out to the sports field (huge open field) to look at all the stars & the constellations. I loved hearing Marlee Anne's excitement & even Mike's when they got back to the room.

The next morning we were up & moving about at 6:30 really feeling quite refreshed. How did that happen? For some reason our children sleep at camp. Even Abe for the first time in about a week slept without screaming all night. WOW!!! See there's that word again!!! It was a true WOW!!!

Mike & Marlee Anne dropped us off at the dining hall while they went fishing. I was in the middle of doing their meds when Marlee Anne came back to tell me she caught a fish. She & Mike, along with our wonderful friend Molly who is a volunteer, were very excited!!!

After our wonderful breakfast all the families introduced themselves. It's so nice to hear about the families, the diagnosis, & where they are in treatment. It's good to put the faces & names together. We made family flags afterwards. Those were hung in the dining hall when we got finished. It was good to walk around to see them & learn more about the families.

Michala had been quite fussy all morning so we took her back to the cabin while Marlee Anne was in her age group session. As soon as Mike took her out of her chair she laid down & went to sleep. OK so nap time for her. I left Abe there with them too while Mary Elizabeth & I headed to get Marlee Anne from her session.

We went to snack time which is a treat for me because they have bananas which we try not to keep at the house since Michala is allergic to them. I grab a banana & peanut butter & put it under Mary Elizabeth's wheelchair to eat when we got to the rock climbing wall. Well I just finally ate that banana & peanut butter that Mary Elizabeth kept in her basket & brought home for me. I completely forgot about that.

Marlee Anne had signed up for the rock climbing wall with some of her friends. She made if a few steps up, looked at me & said I am ready to come down. I told her she had not even made it halfway & to please try a little harder. She made it past halfway & said she wanted to come down. I encouraged her to make it all the way up so she could ring the bell & tell dad about it. Then it hit me I could record it. I said what if I record it & put it on youtube. She loved that idea. She made it all the way, did an awesome job & rang the bell. That definitely deserves a WOW!!! I will share the link to the video once I get it on there. Just keep your volume turned down so you don't hear that southern drawl of mine. LOL!!!

It was time for lunch so Michala was awake & they met us there. For some reason I have always signed up for the first time slot for a massage. It's great but pushes me at lunch time. I had made a wonderful salad & asked them to save it because I couldn't finish it & really wanted to enjoy it after my massage. They were also having the camp store open during my massage. OH MY I couldn't miss that cause it's another one of my WOWs for the weekend.

I sat down in the lounge to wait for my turn. They said one of the massage therapist were late so I said I would be glad to wait for them so the other 3 parents could go ahead. Oh yes I meant to say this is something that the massage therapist volunteer their time to come out & do for the parents during family camp. You got it! WOW!!!!

As I was waiting this cool, calm & collected mom came walking in. She propped her leg up & right behind her walked in one of the camp doctors. She proceeded to tell him how she got the fish hook in her leg. WHAT?! Yes her son had laid a fish hook on her towel without her knowing it. When she picked up her towel the hook went into her leg. Now it had to be cut & pushed through her leg. She was sitting there so calmly & I was about to freak. I thought I am being no help. They needed something to cut it so I thought of the wire cutters in crafts. I ran down & got them. The doctor got them all sterilized & the MOM, yes the MOM cut the hook. WOW!!!

Dale, a dad from Barbados. We had a family from Barbados with us because there daughter is here in Georgia being treated for her cancer. His daughter wanted to go paddle boating at 2:30 when his massage was scheduled so I swapped with him. Worked out perfect for me because I got to finish my salad & go to the camp store. Camp store first of course. I have 2 awesome sweatshirts that I have had for a long time. They don't make them anymore but just this weekend they had 2 in the store. YAY!!! Another WOW moment indeed.

OK if ya'll are getting tired of my WOW moment ya'll better stop reading cause there are more ahead.

I got everyone settled in crafts before heading over for my massage. WOW!!! WOW!!! WOW!!! My massage was with my lovely new friend Keyli. It was her first time for a massage & it was nice to hear how she felt right afterwards. Later she wasn't feeling well but after we talked about it I realized that she had not drank enough water. She drank more water & began to feel better.

Marlee Anne had gone with some of her friends & one of the UGA volunteers to play tennis, putt-putt & gold pan. There were about 6 or 7 volunteers from UGA there for the weekend. It was really nice to meet them & they added lots of fun & help to the weekend. One of them even taught me to make a bracelet while Michele from Camp Sunshine took Mary Elizabeth for a walk in the beautiful sunshine. Their emails at Camp Sunshine are @mycampsunshine so I always say my Michele, my Tenise & my Ann when I am referring to them. We do think of them as ours.

After Mike got back from changing Michala & Abe's diapers we all went for a walk. We ended up at the tree house where Justin was doing drumming. OH WAIT!!! I left out a huge WOW moment. Holly was sitting with Mary Elizabeth while Justin was playing & singing after lunch. Mary Elizabeth began to smile so Holly turned her around so she could see Justin. She fell in LOVE!!! So needless to say we had to take her to listen to Justin drum. As soon as we walked in Justin asked if we wanted drums. Michala of course did. Let me tell you this was a WOW moment cause the drum was the perfect height for Michala to play while sitting in her chair.

OK I am getting ahead of myself. The tree house is built on a hill & I think it has to be my biggest WOW moment of the weekend. OK maybe not but it was HUGE!!! Words cannot describe this place & the pictures don't do it justice. This is mine & Mike's dream for Chimney Park. If I had the money I would do it now. As we walked up it began to take my breath away. When we walked through the doors off the big porch while pushing the wheelchairs in with ease I could not breathe or speak. Mike wants to take Connie, David, Barbee, Cheryl, & Scott on a field trip there. I want LaTrelle to see it too. It has a solar window & green roof that you can see once you climb the spiral staircase. There is a slide to slide down from the porch. Under the tree house is a tire swing & a porch swing. To get back up there is a rope walkway or steps.

When we left we took the nature trail. Along the nature trail there are several benches to stop & rest along the way or just sit to enjoy the nature. There are always some fun aspects hidden along the way. Bird houses are all along the way.

When we got back we met up with Holly & we all went to cooking. They were finishing up so we got to enjoy a cookie. It was time for Mike's massage & the rest of us went to the gym for Wacky Olympics. They did some really fun events.

Time for supper. Do ya'll see a pattern here? I even left off a snack time that we missed some where in there. Seriously you will never go hungry at camp. The definitely keep us busy & pack it all in. Supper was wonderful chicken fajitas & salad. However I didn't get my salad because Mike & Holly told me it was time for Mr. Tone. We had 30 minutes but I guess they thought I had had enough to eat.

Mr. Tone is a magical clown. He is a definite WOW!!! He chose Marlee Anne to assist him in one of his magic tricks. Her expression on her face was priceless. She can't wait to show Uncle Bryant. I wonder how surprise she will be when it doesn't work without Mr. Tone.

Afterwards we all put warm clothes on & went to the campfire, roasted marshmallows for s'mores & sang songs with Justin. Wonderful way to end the night. End the night? It was only 9:00 or so those giggly girls thought. Back to the dining hall for games. They chose Life. OH MY WORD!!! Longest game ever. They said no Monopoly was longer. I was so tired. After we did everyone's meds Mike took his two back to the cabin while Mary Elizabeth & I patiently waited for the girls to finish their very long game. It was fun hearing them laugh, cut up & be little girls. At that moment whether they were a cancer patient or the sibling of one, they were right then just a little girl. WOW!!!

Once again on the way back to our cabin we oohed & aahed over God's awesome creation in the sky. WOW!!!

Another wonderful night in our cabin & we were up & ready to go. Not to leave but to go see our friends once last time. There was a family I had been wanting to talk to all weekend & because of our different activities our paths didn't cross until this morning. Toinia came over to sit with me. She & her husband David have 10 children & all weekend I really admired the dynamics of their large family. Just beautiful! We hit it off quite quickly. I so enjoyed talking with her. They home school and I just loved the spirit she had about her. They live in Dublin so we won't get to see them often but we will keep in touch.

I also really enjoyed getting to know Deanna's family. Deanna was a friend of Marlee Anne's from sibling camp. They live near Hartwell.

It was time for us to say our goodbyes & as I walked in late with another family the wonderful slide show was already going. Jane was our photographer for the weekend & she capture some real WOW moments in some WOW pictures.

To close the volunteers gave everyone a bracelet. We were supposed to give it to someone in our family & tell them why. Before they even handed them out I began to cry. What an awesome thing! How often do we go through life everyday & not tell the ones closest to us how much they mean to us & why. Marlee Anne gave me her bracelet for encouraging her to climb the rock wall. Mike added in a thank you for getting us to come.

Without a doubt we are all refreshed & revived. Ready to face the world & find more WOW moments in our life. We are so thankful to the new, no doubt lasting friendships we have made. The volunteers have touched our lives in ways they will never know. We can't thank them enough! Camp Sunshine staff continues to be a huge part of our lives. Thanks so much  Michele & Ann for taking time to make this weekend so special. Camp Twin Lakes, Chef Jeffery & your staff - thank you!!!

Thanks to our dear friends for taking care of the house, bunnies & mail while we were gone. When I checked the mail there was a donation acknowledgement from Camp Sunshine. A precious long time couple in our lives that mean the world to us made a donation in Michala's honor to Camp Sunshine. Thank you so much for remembering childhood cancer month, our precious angel & an amazing organization that brings sunshine to many who otherwise it would be gone forever. What an awesome close to the weekend!

If you made it this far thanks for letting us share this special WOW moments with you!!!