Day 1 pics

 

Disney last day

Marlee Anne wanted to go to Animal Kingdom today. As soon as we walked outside we knew it was going to be HOT. It's nice how God always says ok it's time to go home. It's too hot, too cold or too rainy for ya'll to be here. This is definitely what he said this day.

 

We got to Studios to see Aunt Nay & we got to see John too! Always a treat. We didn't stay & headed right over to Animal Kingdom.

 

We went straight back to the safari. We had a wonderful guide. Sitting right behind us was a lovely family from Ft. Walton Beach. There son had Cerebral Palsy. Their daughter was a little younger than Marlee Anne. The mom was asking how Marlee Anne does with her sibling. The mom said she had some concerns about her daughter resenting her brother someday. I told her it's a concern of mine. I told her that we keep that line of communications open so that Marlee Anne can share any feelings with us at anytime so we hopefully don't run into that.

 

After the safari we told Marlee Anne she could choose one more thing. It was already 89 degrees & getting hotter by the minute. They were struggling with the heat. She chose to see Mickey since we hadn't seen him that trip. As we were walking up to see him we spotted Thumper. She was so cute! I hope she is a girl. Marlee Anne was excited to tell Thumper that she has a bunny named after her. She explained it was Flower but she changed it's name to Thumper. Thumper was very excited!!!

 

As we were waiting in line the CM made the announcement that since it's so hot the characters had to take a 5 minute break every so often to cool off. It was Mickey's 5 minute break. When we got up there to see Mickey there was a wonderful CM there named Bill. We had met him on a previous trip. He was very disappointed that we waited in line. He was going to get a manager to get us a guest assistance card. We told him we had one. He said well please use it & do not make your children wait in this heat.

 

We got to see Mickey & the photopass photographer was wonderful. She seconded Bill about not waiting. Bill asked Mickey to please pick 4 pins from his lanyard to give to each one of the children. Mickey was as excited as the children were. So was Bill. As we were leaving Bill went over, hugged Mike & told him bless you. All of that took less than 5 minutes but it made a huge difference in our lives.

 

We left the park & headed to Studios to pick up goodies & say our goodbyes to Aunt Nay & John. It's hard leaving them! We had a great drive back home. Got in & got settled to start the week.

 

Hope you enjoyed our trip.I will share pictures soon. I took over 600 so I will be sure to pick & choose.

Disney Day 3

OK ya'll I left out a really important part of yesterday. While Mike ran to the room to drop some stuff off we went up to the food court. Well low & behold there was a big beautiful cupcake. Yes I took a picture of it! I sat down & offered Marlee Anne a bite but she didn't want it. I proceeded to enjoy the most wonderful cupcake I have ever had in my life. It was the most delicious yellow cake with caramel oozing out of the inside & the most delicious caramel icing on top. Almost as good as Miss Indie Crawford's & Miss Mildred Pratt's homemade caramel icing. Mike walked up & asked was it worth. He meant sugar & calorie wise. I immediately said oh yes! He got one too. The CM walked over & said that didn't last long. Talking about mine. Then he looked & Mike was done with his. He couldn't believe it. Ya'll take my word for it or better yet plan a trip to The Contermporary to get one. YUM!!!

 

OK so it's Saturday morning & I am wondering how this day will be anywhere near as wonderful as yesterday. We head over to Studios after Mike checks to see if they have the cupcakes out yet. Sadly they're not! OK we don't typical laugh at people but this could not be helped! While waiting at the gate for Aunt Nay we love to people watch. We guess where they are from & what the are celebrating, who wants to be here & who doesn't & so on. Well as we are people watching that morning there is a family of 4. Mom, Dad, & 2 daughters. Nicely dressed, nice looking family. Well all of a sudden dad breaks out in morning calisthenics. Right there in the middle of all the people coming in. The oldest daughter bust out laughing & we do too. However soon we realize he is not joking he is very serious about this. He is warming up like he is about to run a marathon. I guess to some a day at Disney can be considered that. He is stretching all kinds of ways. He holds on to his daughter's shoulder as he does his hamstring stretches. It is really too much to take watching him & Mike commentating. The mom is kinda looking around like no my husband is not doing this right here. Daughters are still laughing. People are walking way around them. Well Mike says I hope De comes so he can help them. De used to do character warm-ups so he would be a great help. Well comin around the corner with Aunt Nay is De. By the time they get to us Mike & I are laughing so hard. It was a wonderful start to our day. It was awesome to see De too.

 

Marlee Anne had already decided she wanted to do the Backlot Tour that morning. It had been several years since we had been on it & she didn't remember it. It was a lot of fun & we all really enjoyed it. That was all we did there & we headed back to the room. I was going to stay with everyone in the room while Mike & Marlee Anne did some of the stuff at the Flower & Garden Show at Epcot. They sent me pictures throughout the day so I could see all the neat stuff they were doing.

 

The night before Abe had a terrible accident so the sheets & comforter had to be changed. When Mousekeeping came she was amazing! Her name was Linda & we quickly got to know each other. She shared about her children & how she got to Disney. She was a very sweet lady & I really enjoyed our time together. I picked up all the trash & did all I could to help out because she wouldn't let me change the sheets. She took time with each of the children. They enjoyed that special attention.

 

After she left I got everyone fed. We ordered room service which was such a treat. It was really good too. Everyone was settled for a nap I thought. HA! Michala had other plans & did not want to sleep. In a little while there was a knock at the door. I knew it was too early for them to be back from the park. When I opened the door there was Linda holding 4 precious Disney stuffed animals. She had tears in her eyes as she handed them to me & said one for each of your precious children. Disney magic I tell you. Yes I cried!

 

When Mike & Marlee Anne got back she & I went out to the pool. Sitting in the chair watching her got me quite emotional. As I watched her I thought it shouldn't be this way with me out here & Mike inside with the other 3. My 17 year old Mary Elizabeth should be lying beside me in the lounge chair while the other are out swimming together. Every now & then I do long for things to be different for them.

 

After awhile it was time to get ready to go back to the park. I wanted to go to Epcot to take some pictures. Marlee Anne wanted to show me the neat Eco playground they had there. It was too cool! We loved it! As we walked around The World Showcase I took pictures of all the luminaries. Marlee Anne wanted to do the Bee Scavenger Hunt but none of the CMs knew anything about it. It was on The Flower & Garden show flyer but no signs of it. Not sure what happened with that.

 

We made it to Japan & Marlee Anne decided she wanted sushi again. She & Mike had eaten that for lunch but she wanted it again. I just wanted a Koki Gori. As we were waiting for Mike to get her sushi I checked my emails. BIG mistake. One of Michala's Aicardi sisters passed away. She was one of the first girls we had ever met. I was heartbroken. It was so very sad! Even in The Happiest Place on Earth the sadness of the world can creep in at times. While Marlee Anne was finishing her sushi Mike went to get my Koki Gori. I got cherry which is either new or I didn't know they had it. It was so good. I was nice & shared with Michala & Marlee Anne.

 

Fran Cosmo from Boston was there in concert. It was nice to hear some of the songs we knew. We headed on around The World Showcase & finished taking pictures. The flowers, topiaries, bonsai & all were just breathtaking. It was about time for Illuminations & Marlee Anne was getting anxious about the fireworks starting so we headed on out of the park. It was nice to get back to the room to get packed up before it got too late.

Disney trip day 2

We headed over to Studios & this morning was greeted by Aunt Nay & John. John was so proud that he had us fast passes for Toy Story Mania later that day. John didn't know about our guest assistance cards. He was so cute as always!

 

We already knew our Woody was there today so we headed over to see him first. At least that's what we thought we were doing. We got to the Power Rangers first & my not at all girly girl wanted to see them of course. She saw the red & yellow one first then the blue one. By the time we got up there to see the blue one he was being called to the car. He quickly told them to wait & saw Marlee Anne. She was very excited!

 

We went over to where Woody used to be. Now he is across from the Toy Story Mania ride. Mater & Lightening McQueen is where he used to be. We decided we would see them & see Woody a little later. After we got pictures with Cars we saw the pink & green power rangers. We were all getting a little hungry so we decided Pizza Planet would be a good spot. Just as we were about to eat we got the famous call from Woody. He told us his hours & also where to sit for the parade.

 

Jessie was near Pizza Planet so we got pictures with her & also the green army men. After they left Bolt came out. This was his first week to appear so it was exciting to get pictures with him.

 

They have these new to us spraying fire hydrants. They were really fun to play around with & take pictures. It was time to head over to see Woody. They have a wonderful set up now with Woody & Buzz inside across from the ride. We were taken in the back door to see them. Woody jumped up & down & told everyone these were his friends. Every now & then in life something reminds me that there are some amazing people in this world that love my children for who they are. Woody made each of them smile that day along with making Mike & I smile. I know that's hard for some people to understand but some of you understand the full importance of that moment. It reconfirms why Disney is so special to us. To see our children being treated how the rest of the world should treat them means to much to me. Not special back door treatment but being treated that just because they cannot speak or walk doesn't mean they are any less important than anyone else. I know that Woody saw the love & thanks in their smiles that day. I know that his heart was touched! We had an amazing photo session with he & Buzz. Mike said something cute to Buzz & now I cannot remember what that was. I am putting this here so he will read it & remind me of what it was.

 

We still had a little bit of time before meeting the gang to ride Toy Story so we went back to see Mike & Sulley from Monsters Inc. While waiting to see them I got a text from Aunt Nay wanted to know if the 2 or 4 show of Beauty & The Beast was better for us. We had to at our parade spot at 2:30 so we chose 4. Mike & Sulley were really cute & always lots of fun.

 

Abe bought me a surprise. A Kermit the Frog magnet. LOVE frogs & especially Kermit. He also bought me a new Disney window book that I had never seen before. We usually don't buy souvenirs unless something just really hits us. Well this trip the most wonderful t-shirt hit me. It's white with black ringers with a black & white picture of Main Street with Walt & the only color is Mickey standing with Walt. Beautiful! I also found a ring that I could not do without!

 

Time to go meet everyone for the ride. We are so excited for them to be riding with us. Marlee Anne had already picked Nevada to ride with her but as soon as they walked up she picked John. Too funny! Immediately they started strategizing about how they were going to beat everyone. They did win!

 

We had a few minutes before we had to get to the parade so we went to Animation to see the characters. Marlee Anne saw The Incredibles. We went to see the making of Toy Story 3 which was really cool. Then we saw an artist actually drawing at her desk. Really awesome to see their work in progress.

 

Got to our spots for the parade & the family beside us was also there to see Woody. We love this parade because it's so much fun. Having Woody there playing with us was so much fun. They ask children out to dance with them & Woody motioned for me. I thought he was asking me to come dance & I said no. He was actually asking me to move so he could get up on the sidewalk with Mary Elizabeth, Michala & Abe. They were so excited & loved that!  After we got some pictures & he got done playing with them he went back out to the street to dance with Marlee Anne some more. What an awesome time! Our friend Amy got to enjoy it with us too & made it even more special.

 

Next we went to Beauty & The Beast. I love this show any way but our Beast was there that day so I knew it would really get me. We had to check in at the umbrella & Marlee Anne was given her special birthday princess instructions. The show was wonderful & at the end Marlee Anne went up to the stage & was given a rose by Belle & Prince Adam. After the show we were asked to wait for a surprise. I heard a voice & it was Zak. How awesome! We haven't seen him in so long. It was really good to see him. We thought that was our surprise & the cast member said ok we are ready for you. We went back stage and met the cast & had pictures. Very nice surprise from Zak.

 

We had planned to go over to Epcot to eat at 9 dragons with Aunt Nay. However it was booked. We know to book ressies ahead of time but we weren't sure what time would work for her. Right after meeting her over there Mike accidently hit Marlee Anne's sore on her foot & it bled & bled. We were at guest relations & the nicest CM from Tennessee came to her rescue. She had been wanting a squirt bottle for the past two days but I wouldn't buy her one because she had one at home that she was supposed to remember to pack. So any way this CM didn't know that but he brought her one. Made her day! We went to first aid & got her all taken care of.

 

We ended up eating at the Lotus Blossom which was very good. Once again Michala wet everything! Luckily I had extra shorts for her this time. Marlee Anne was so excited Aunt Nay was going to hang around with us for late night at Epcot. We had the best time riding rides with her. Test Track & Soaring. Marlee Anne even got her to ride Mission Space for the very first time. The Flower & Garden show was unbelievable. We went through the butterfly house & the fairy garden. I cannot wait to share those pictures with ya'll.

 

We hopped on the monorail & headed back to our room. It was such an emotional day with so many wonderful & happy moments.

Disney trip day 1

Thursday morning around 5 we left for Disney World. We had planned this trip last year for Mary Elizabeth's 17th birthday & Marlee Anne's 8th birthday.

 

We had a wonderful drive down. We got to The Contemporary & were shocked that our room was ready. We could not have asked for a more perfect room. Ground floor with sliding glass door that opened right out to the pool with the beach just to our right. I told Mike for them to have a great time at the parks I was staying there the whole time. It was the first time ever going to Disney that I was not anxious to get to the parks. It was absolutely lovely & so very peaceful.

 

While I was unpacking & letting everyone stretch out, Mike & Marlee Anne headed for the waterslide right outside our door. It was very neat to get everything done & get to watch them.

 

When they got done they went upstairs for a snack. My friend Sue had told me about a dulche de leche cupcake. Mike saw it but said I could go back that night and get one on our way back from the park. He got us a black forest one to try. It was really good.

 

Then we headed over to Studios to see Aunt Nay. Here comes Aunt Nay, John, Amy & we got to meet Stephanie. We always love making a new Disney friend. It was so wonderful to see the others. We were so glad to be there.

 

We told Marlee Anne that she could do whatever she wanted to on this trip. Every Disney trip Mary Elizabeth, Michala & Abe are quite spoiled along with Marlee Anne. However this trip we really wanted Marlee Anne to choose. She had put lots of thought into this as had our Disney friends. It was such a special time for her & for us! I think sometimes we let her get lost in all the daily challenges of life. This special time just for her was really great! Thanks to our special Disney friends cause without ya'll this wouldn't have happened! Marlee Anne's motto now is if it's Disney Aunt Nay can make it happen!

 

She wanted to ride Star Tours first. Ya'll need to remember she is so her daddy's child sometimes. This trip really showed it at times. Mike, Michala & Marlee Anne rode it while I fed Abe & Mary Elizabeth sang to us. She was so excited to be able to be outside. When they came back they were laughing so hard. They are still laughing at Michala's expressions on the ride. I hate that I missed that!

 

We had already planned to go to Magic Kingdom for late night so we headed out to go back to the Contemporary. We parked & then walked over to the Contemporary. It was so funny because later that night checking my messages Josephine had said to make sure to take that nice walk. It was indeed to wonderful!!!

 

The park wasn't too crowded even though there were two Spectromagic parades that night. We ate at Casey's before heading over to Big Thunder Mountain Railroad. Mike & Marlee Anne rode that. I sent a text to my friend Angie while we were waiting. They were in the park but about to head out. We decided we would try again later to meet up. Next was Pirates of the Caribbean for all of us. When Mike picked Michala up to get on the ride she was soaked. Back in the wheelchair & out the back way.

 

Michala always seems to get new clothes at Disney some how or another. We went to baby changing to get her cleaned up & I was off to get her some shorts.

 

Oh & I should back track for those of you that didn't read it on facebook. If you have a child that only has one leg make sure you pack the right shoe. I did not! I went to put her shoe on her to go to the park & it wouldn't fit. Yes I went as far as trying it on. We donate her other shoe to the shoe swap for other children that only have the other foot. These were new & I had not sent off the other shoe. I just saw it, grabbed it & packed it. I didn't say a word to Mike & asked him to put her shoe on her. He picked the shoe up & looked at me. He knew right away without even trying it on. My excuse is he gets a little more sleep than I do.

 

OK so we get Michala all cleaned up. I tell Marlee Anne she can pick anything in the park to do. She picks The Hall of Presidents. Yes I said Hall of Presidents. WHOSE child is this? No doubt her daddy's! I have to say that it was really good. We all really enjoyed it.

 

Afterwards she wanted to ride Haunted Mansion. Turned out to be perfect timing because I could do everyone's meds while she & Mike did the ride. Plus it was time for the fireworks. Marlee Anne hates the loud noise & Michala loves it. We couldn't flush the toilet in the resort without her having a startle seizure but the fireworks she loves! Got done with meds just as the fireworks were over & they were off the ride.

 

We decided to get in one more ride before heading out. Buzz Lightyear it was. However on the way we had to pass the Indy Speedway & Marlee Anne really wanted to do that. That ended up being the last ride.

 

We got out of the park just before the last Spectromagic parade started. We took the nice walk back to the Contemporary. I stopped by the food court to get my cupcake & they were sold out. I was bummed but knew I had a few more days to try to get one.

 

medical stuff

We think that we have Michala cleaned out now. We were aggressive with treating her & all seems well now. Thanks to everyone for all the help & advice! Mike asked if you could get too much fiber. My answer was no. However Abe's GI specialist today said yes. Of course my husband is usually right. URG!!! She said rule of thumb is age plus 5. Michala should be getting 17 grams. She may be getting a little more than that but not much. She also said make sure she is getting plenty of fluids which she does. We will take Michala to the GI when Abe has his follow-up.

 

One thing we have run into lately is that Michala holds her bladder. When she had the ultrasound it was so full. When she does go her big diapers will not even hold it. She soaks everything. I know this has been addressed on the Aicardi listserv but looking back I could not find any info. Any advice would be greatly appreciated!

 

We did find out that her carnitor is low. That could have contributed to her recent impaction.  It's never been before that we know of & she has never taken carnitor before. We will start that soon so hopefully that will help.

 

The Mayo Clinic found out that Abe's tryptophan issues was due to his vigabtrin. We had already made plans to start weaning him before we found out about that. We started weaning him yesterday. Please pray we are able to get him off it successfully. My fear was that the vigabatrin may be taking care of some of his seizures. He still has seizures all the time on 4 seizure meds & 3 rescue meds. It's our hope that getting him off some of those will allow us to see more glimpses of him. We started weaning him yesterday. So far so good. The past two times we have tried to wean him the first increase threw him into such bad seizure we had to go right to the ER because we could not get them stopped at home.

 

His GI appt today went great. She had put him on a diet last time because with his suspected mito disease a lower weight is better for him. He had gained 2 pounds but she was ok with this. We don't have to go back for 6 months unless he needs a bigger gtube.

 

Thanks so much for your continued prayers & support!

reflections

What a week this has been! A week ago I received the early morning call from my friend Debbie telling me her son Dillon passed away. What heart ache! Dillon had a mitochondrial disease that took him away little by little. The doctors said there was nothing else they could do for him. It hit too close to home for us. We miss Dillon & hurt for his mom Debbie & his brother Corbin. Monday was visitation & Tuesday was the funeral. They need our prayers now more than ever.

 

Monday my sweet friend Carman took her week old baby in for her check up. They found a hole in her heart. She spent several nights at Egleston. She will be having open heart surgery when she is 6 months old.

 

On Wednesday one of Michala's Aicardi sisters passed away. She was 11 months old. Her mother & I had recently met online. It was so very hard to accept this for all of us. On Thursday another one of Michala's Aicardi sisters passed away. Again our extended Aicardi family was hit hard. Please remember these two families in your prayers.

 

Michala's Aicardi sister Kaia in Norway is not doing well. This has been hard on us to be so far away. We have reached out with our prayers & support. Please keep she & her family in your prayers.

 

I realize tragedy, sickness & sadness hits all around the world every day, every minute, even second. It's hard sometimes because our lives have been affected with Mitochondrial, Panhypopituatarism, Aicardi, Epilepsy, Cancer, Austism, Clubfeet, Infantile Spasms & so many more medical things that our circle of friends & extended family is large. We are so thankful for that but when it hits it hits hard & sometimes so often. I have to say it does make it nice to have someone awake on the other side of the world to reach out to for answers at 3:00 AM.

 

Earlier in the week we found a place, a spot, a knot on Michala's stomach. We thought constipation & began aggressively treating that. No big changes. Every "c" mom has this wonder & doubt tucked into the back of their mind whenever something new, questionable & different arises in their child. Friday morning Mike said you really need to take her to the doctor. All week I tried my hardest to push the possible of "c" to the back of my mind & say it was constipation. Friday I took her to the doctor. We were told it was a mass, possibly a benign tumor. The unsaid stuff is what got us. The possibly part of it. They were going to schedule an ultrasound & KUB at Egleston.

 

I had posted a message on FB & asked for prayer for Michala. I wanted everyone to specifically pray she was constipated & she would poop. LOVE FB! Love getting responses back from all over the world knowing she was being lifted up right then.

 

Friday night I don't know if I ever closed my eyes until Mike woke up & said please go to bed, I will stay up. God bless him! He does that quite often & seems to know just when I need it. I was woke up to Michala laughing hysterically.

 

I jumped up & ran to her knowing it was a bad seizure. When I got to her I said Michala. She looked at me & smiled her funny grin. Then she laughed. No seizure so I started checking her tummy. NOTHING! No mass. Yesterday I couldn't even say or type the word mass. Last night this huge thing was sticking out of her stomach. This morning it was gone. No poop - nothing but it was GONE!

 

Yesterday I asked for prayer for poop. This morning I was reminded just how very big my God is. He took it completely! No questions asked. He is so much bigger than I realize sometimes. As the rains came & the seizures increased I was able to have the reminder that our God is big enough to carry us all through this journey.

 

Have a peaceful & rainy Saturday. Well if it is raining in your part of the world. If not enjoy the sunshine! Whatever you do be blessed & thankful!

 

With a thankful heart!

Kelli

Fairy House tour

Come to Chimney Park for the second annual tour of enchanting fairy houses. May 1, 2020, 2-5 PM - free event. Experience the magic as you wander through the park enjoying music, storytelling, crafts, and exhibits. Gather 'round the maypole. Bring your own natural materials to build a fairy village.

Enter to win raffles, and participate in a silent auction of area artists' work—on display in the library meeting room beginning April 19.

Chimney Park is just behind the Newton County Library

Please pass information on. Also I have attached the flyer for anyone that would like to print it to hand out or display.

Thank you!!!

Stella & Dot reminder

Just a reminder about my Stella & Dot catalog show. It is soon to close. If you would like to order please go to http://www.stelladot.com/sites/sjs and click find your hostess. Type in my name & order. Thanks so much!

 

Kelli

Sunday at the Masters 2010

WOW!!! I am so exhausted. It's that wonderful exhaustion when everything is right with the world.

 

A few weeks ago Mike asked me to go to the Masters with him on Sunday, April 11th. There are some discrepancies there because Marlee Anne said I invited myself. She really wanted to go with him. However I was the one going.

 

I emailed Mo right away to see if you she could come keep the children on that date. She emailed me right back and said she had a conference then and couldn't. I sent Mike a text and said it's a no go Mo can't come. Right after that Scheree called & said what are you doing. I told her & she said I will keep them. No hesitation whatsoever just that she would do it. I told her it would be a very long day. She didn't care.

 

I wanted to have a nurse on call just in case. So my prayer warrior Bonnie said she & her husband David would be on call for us. They came over & got their orders & were ready to go. Thankfully there was no need for them to be called.

 

My only other hesitation was not having contact because I couldn't take my cell phone in. My friend Paige whose husband works at the Masters took care of that part for us. That eased some of my anxiety.

 

We left at 7:00 in the morning. The drive down with just the two of us was so very nice. We got there and had breakfast. I had a egg salad sandwich & sweet tea. We did some shopping & then walked the entire breath taking course. When we got Magnolia Lane they were taking pictures. There was a two hour wait. The lady told us to come back around 2 & we wouldn't have to wait as long. We stopped by to see the 3D TV which is way too COOL!!!

 

One thing that was very nice is that several places they had phones for you to use. I called twice to check on them & once for Scheree to text Mark to see where we were supposed to meet them cause we couldn't find them.

 

We got to the 16 tee & met them there. Mike & I decided to go back & get our picture made before we sat down with them. We walked back up to the Club House for our picture. The nice Italian father & son in line behind us checked to see how long the wait was & told us half hour. It was exciting to get our picture made together. I have attached it for ya'll to see.

 

When we got back to 16 we got some lunch before sitting down. Mike had some BBQ & I had a pimento cheese sandwich.

 

It was so exciting & so much fun to sit with Paige & discuss all the players as they went by. Mike was enjoying his time with his friend Clay. Mark was busy making new friends & taking pictures. Since they got there before us they had chairs sitting right at the ropes for us. I loved seeing all the players going by. They were close enough for us to reach out & touch them.

 

I wore my flip flops. Well my Yellow Boxes to be exact because they are the best & oh so comfortable. I slipped my feet out & in just a few minutes someone from The Masters came over & got on to me. He said I hate to do this but if you are not going to wear your shoes you have to keep your feet down. He said in a little bit the leaders are going to be coming through & you are going to be on TV. If your bare feet are on TV I will get in trouble. I apologized & told him I was putting them back on right then. I just knew if I didn't I would get excited & cross my legs or something & my feet would show. I didn't want to get that sweet man in trouble. Well in just a few minutes he comes back. He asked us all to put our cups & water bottles behind our chairs so they wouldn't show up on TV. They even said something to the camera a little while later.

 

When it was time for the leaders to start coming through a camera man came right beside us. He was really nice to keep me updated on Phil's progress. I have gone the entire week not mentioning to anyone who I was pulling for or who I was sure I would be watching get the green jacket this year. Each year I jinx him. I know that Mike knew but he was very good not to discuss it. I have to say I was very proud when he walked past us.

 

After he & Lee finished the 16th hole we said our goodbyes to our friends & headed to the front of Eisenhower Cabin where the green jacket ceremony would be held. We got a great place to view it & waited for Phil to finish up. It was really incredible to watch all the golf dignitaries from all over the world come in for the ceremony. After that Phil's family came in & were seated. Seeing Phil receive his 3rd green jacket is something I will remember forever. It was an awesome experience.

 

If you have never been to Augusta Nationals then think of what you have Heaven pictured as or an impeccable manicured lawn that you can't even describe. There were green rolling hills with any color of azalea you could think of. The trees were so majestic. As Mike & I walked back to the back gate where we parked there were probably 20-30 people spread out over the course that we could see. It was so quiet & so peaceful. I felt honored to be walking hand in hand with my husband at such an beautiful place.

 

Our drive home was nice too.I was so ready to get back to see my babies. That was such a long time to be away from them. However I did good. Scheree & I were discussing that when we got back home. Thanks to the prayers of everyone I was very calm & had a wonderful time. One brief time I got a little anxious. Because of prayers all our babies did great. Scheree never got nervous & did an amazing job. I am still overwhelmed that she offered & wanted to stay that long in our home with our precious children. How blessed are we!

 

It hit me last night how calm & peaceful I felt. I thought back over the day. I realized Mike & I are still here together. We still fit. We still work. Not once did we talk about doctors, hospitals, appts, medications or seizures. There was no stress. I sometimes wonder if the couple that fell in love with each other almost 25 years ago are still there as a couple without all the other things holding us together. Well low & behold we are there - stronger & closer than ever!  I realized yesterday just how very much I am blessed & how very much in love with my husband I am. I mean everyday I know I am blessed. I know that I love Mike also. Even though neither of us like to leave our children & we work so well as a family unit, the hours with just Mike meant the world to me. I don't think words can convey that to anyone, not even him.

 

I am more thankful today to God for bringing this amazing man in my life and giving us 4 beautiful children. I am so thankful to the wonderful friends in our life that made this day happen & gave me a peace.

 

With an overflowing grateful heart!!!

Kelli

 

Sunday at the Masters 2010

WOW!!! I am so exhausted. It's that wonderful exhaustion when everything is right with the world.

 

A few weeks ago Mike asked me to go to the Masters with him on Sunday, April 11th. There are some discrepancies there because Marlee Anne said I invited myself. She really wanted to go with him. However I was the one going.

 

I emailed Mo right away to see if you she could come keep the children on that date. She emailed me right back and said she had a conference then and couldn't. I sent Mike a text and said it's a no go Mo can't come. Right after that Scheree called & said what are you doing. I told her & she said I will keep them. No hesitation whatsoever just that she would do it. I told her it would be a very long day. She didn't care.

 

I wanted to have a nurse on call just in case. So my prayer warrior Bonnie said she & her husband David would be on call for us. They came over & got their orders & were ready to go. Thankfully there was no need for them to be called.

 

My only other hesitation was not having contact because I couldn't take my cell phone in. My friend Paige whose husband works at the Masters took care of that part for us. That eased some of my anxiety.

 

We left at 7:00 in the morning. The drive down with just the two of us was so very nice. We got there and had breakfast. I had a egg salad sandwich & sweet tea. We did some shopping & then walked the entire breath taking course. When we got Magnolia Lane they were taking pictures. There was a two hour wait. The lady told us to come back around 2 & we wouldn't have to wait as long. We stopped by to see the 3D TV which is way too COOL!!!

 

One thing that was very nice is that several places they had phones for you to use. I called twice to check on them & once for Scheree to text Mark to see where we were supposed to meet them cause we couldn't find them.

 

We got to the 16 tee & met them there. Mike & I decided to go back & get our picture made before we sat down with them. We walked back up to the Club House for our picture. The nice Italian father & son in line behind us checked to see how long the wait was & told us half hour. It was exciting to get our picture made together. I have attached it for ya'll to see.

 

When we got back to 16 we got some lunch before sitting down. Mike had some BBQ & I had a pimento cheese sandwich.

 

It was so exciting & so much fun to sit with Paige & discuss all the players as they went by. Mike was enjoying his time with his friend Clay. Mark was busy making new friends & taking pictures. Since they got there before us they had chairs sitting right at the ropes for us. I loved seeing all the players going by. They were close enough for us to reach out & touch them.

 

I wore my flip flops. Well my Yellow Boxes to be exact because they are the best & oh so comfortable. I slipped my feet out & in just a few minutes someone from The Masters came over & got on to me. He said I hate to do this but if you are not going to wear your shoes you have to keep your feet down. He said in a little bit the leaders are going to be coming through & you are going to be on TV. If your bare feet are on TV I will get in trouble. I apologized & told him I was putting them back on right then. I just knew if I didn't I would get excited & cross my legs or something & my feet would show. I didn't want to get that sweet man in trouble. Well in just a few minutes he comes back. He asked us all to put our cups & water bottles behind our chairs so they wouldn't show up on TV. They even said something to the camera a little while later.

 

When it was time for the leaders to start coming through a camera man came right beside us. He was really nice to keep me updated on Phil's progress. I have gone the entire week not mentioning to anyone who I was pulling for or who I was sure I would be watching get the green jacket this year. Each year I jinx him. I know that Mike knew but he was very good not to discuss it. I have to say I was very proud when he walked past us.

 

After he & Lee finished the 16th hole we said our goodbyes to our friends & headed to the front of Eisenhower Cabin where the green jacket ceremony would be held. We got a great place to view it & waited for Phil to finish up. It was really incredible to watch all the golf dignitaries from all over the world come in for the ceremony. After that Phil's family came in & were seated. Seeing Phil receive his 3rd green jacket is something I will remember forever. It was an awesome experience.

 

If you have never been to Augusta Nationals then think of what you have Heaven pictured as or an impeccable manicured lawn that you can't even describe. There were green rolling hills with any color of azalea you could think of. The trees were so majestic. As Mike & I walked back to the back gate where we parked there were probably 20-30 people spread out over the course that we could see. It was so quiet & so peaceful. I felt honored to be walking hand in hand with my husband at such an beautiful place.

 

Our drive home was nice too.I was so ready to get back to see my babies. That was such a long time to be away from them. However I did good. Scheree & I were discussing that when we got back home. Thanks to the prayers of everyone I was very calm & had a wonderful time. One brief time I got a little anxious. Because of prayers all our babies did great. Scheree never got nervous & did an amazing job. I am still overwhelmed that she offered & wanted to stay that long in our home with our precious children. How blessed are we!

 

It hit me last night how calm & peaceful I felt. I thought back over the day. I realized Mike & I are still here together. We still fit. We still work. Not once did we talk about doctors, hospitals, appts, medications or seizures. There was no stress. I sometimes wonder if the couple that fell in love with each other almost 25 years ago are still there as a couple without all the other things holding us together. Well low & behold we are there - stronger & closer than ever!  I realized yesterday just how very much I am blessed & how very much in love with my husband I am. I mean everyday I know I am blessed. I know that I love Mike also. Even though neither of us like to leave our children & we work so well as a family unit, the hours with just Mike meant the world to me. I don't think words can convey that to anyone, not even him.

 

I am more thankful today to God for bringing this amazing man in my life and giving us 4 beautiful children. I am so thankful to the wonderful friends in our life that made this day happen & gave me a peace.

 

With an overflowing grateful heart!!!

Kelli

 

You're invited to Kelli Hopkins' Online Stella & Dot Shopping Event

 

	Party Info Ordering deadline: Sunday, April 18, 2010 11:59 PM Hosted by: Kelli Hopkins 770-786-0479 mommie2angels@bellsouth.net E-boutique Address: Shop the E-Boutique You're Invited! Hi Friends & Family, You're invited to an Exclusive Online Stella & Dot Jewelry Shopping Event hosted by Kelli Hopkins Have a little fun and splurge on amazing collections like the semi precious and sterling silver heirloom pieces and the editor adored and celebrity coveted signature styles. You may have seen it featured in Lucky Magazine, Redbook, InStyle and Good Housekeeping or on celebs like Debra Messing and Paris Hilton, just to namedrop a few. This irresistible line, not available in stores, is such an affordable way to indulge in these tough economic times. Women can?t get enough of the Stella & Dot! Join the online party, shop fabulous styles and enjoy the party perks especially for you. And remember, good friends share their best style secrets with friends, so forward this along! My niece Staci has started her business with Stella & Dot. Originally I decided to host a catalog show to help Staci get her business going. After looking at the jewelry I saw some that I would love to have. By taking the time to look at the website and placing an order you will help Staci get her business going and help me get some wonderful jewelry. Thanks so much for your time! Please RSVP by clicking below: Count Me In   Kelli Hopkins Independent Stella & Dot Stylist Staci Satterfield Independent Stella & Dot Stylist 678-725-3572 Discover what all the buzz is about at my Stella &Dot web site: http://www.stelladot.com/sites/sjs stacisatterfield@yahoo.com

Mary Elizabeth's 17th birthday

Every time I type or say Mary Elizabeth's 17th birthday I have to stop a minute. It's hard to believe. How very wonderful! We are so very blessed. She has surpassed her life expectancy by 14 years. A great reminder that God is in control.

 

Yesterday was her 17th birthday & what a beautiful day it was. I have learned more from Mary Elizabeth in the past 17 years than I could ever learn from anyone else. She has taught me what is important in life. She is the most understanding, compassionate & forgiving soul I have ever met. She has taught me about unconditional love, faith & trust.

 

I would not have chosen this life for myself. In my dreams this is not the "perfect" life I created. I am so thankful for unanswered prayers. I would have missed out on so much in life without this precious angel.

 

My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.

 

Love ya'll!!!

Kelli

 

Mary Elizabeth's 17th birthday

Every time I type or say Mary Elizabeth's 17th birthday I have to stop a minute. It's hard to believe. How very wonderful! We are so very blessed. She has surpassed her life expectancy by 14 years. A great reminder that God is in control.

 

Yesterday was her 17th birthday & what a beautiful day it was. I have learned more from Mary Elizabeth in the past 17 years than I could ever learn from anyone else. She has taught me what is important in life. She is the most understanding, compassionate & forgiving soul I have ever met. She has taught me about unconditional love, faith & trust.

 

I would not have chosen this life for myself. In my dreams this is not the "perfect" life I created. I am so thankful for unanswered prayers. I would have missed out on so much in life without this precious angel.

 

My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.

 

Love ya'll!!!

Kelli

 

appt update

Mike has taken Marlee Anne to the library so I thought before I try to compose myself once again I would write this email. When I called home my sister asked if I could tell her how it went or would I rather send an email. It hit me it's easier to send an email cause ya'll don't have to understand my spoken word through the tears like she did.

 

I had visioned writing this email to ya'll saying woohoo it's great news the first neurologist that called us can't read. However that is not the case. He does know how to read & he read Abe's MRI report just fine. Dr. Flamini could not give us a time line. They do not know how fast it is progressing. He doesn't know of anything to slow or stop the progression.

 

As if that wasn't enough to handle for the day he went on to Abe's EEG. He has Lennox-Gastaut Syndrome. I so hoped he didn't but as his seizures continued to progress & not be able to be controlled I did wonder.  It's a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types. Definitely not a diagnosis we wanted.

 

We will increase Abe's lamictal over the next 5 weeks. A week after that we will try to decrease his vigabatrin by 1/4. If he starts having those other seizures again we will put him right back on it. He is on so much seizure medication & it would be nice to get him off some if we can do it safely.

 

His EEG showed that he is having seizures all the time. So many so they couldn't count. When he is not having a seizure he is having some type of activity on both sides of his brain. That's the reason we very rarely catch a glimpse of a smile, babbling or anything else. Not much clear time. Working on overload most times even when he sleeps.

 

Michala's EEG did show the drop seizures. She recently started her period (I apologize if that is too much info for some of you but it's needed in case some of our seizure knowleagble friends think of something). Once she started it seemed to have a change in her seizures. That along with the lamictal increase. He increased her VNS output. Right now we will hold where we are with her & let her body tell us what she needs.

 

I hope that I covered most everything. I go from moments of anger where this wall comes up, to complete exhaustion and breaking. This being moldable by God stuff is exhausting! I guess it's me making it that way. I was hoping once the appt was over the stress would kind of go away. It's lingering. It's hard to go through this grieving of losing a part of our children each doctor appt.

 

Yesterday as we had pictures made with the bunnies Aunt Kim got for the kids I watched Abe with the bunny & wondered would this be his last picture with bunnies. Mike & I jumped in the picture with all four of them & I thought is this going to be our last family picture. I did that with Mary Elizabeth & with Michala. I am ready to be past this phase. I know though that I have to deal with it on my own time & get to that point.

 

Thanks so much for all the prayers & support & for standing in the gap for us!

No Matter What Happens

Almost 17 years to the day I was sitting at Julia A. Porter listening to our dear friends The Johnson Brothers sing. As I sat there having contractions we just knew Mary Elizabeth would be born any minute. Jason dedicated the song No Matter What Happens to me because it was & still is my favorite song. Little did we know that song would become the theme for our lives.

 

Mike & I try so hard to be strong but the ways of the world wear on us. Sometimes I so wish we could leave & only have our family of 6 to deal with. Instead God intends for us to use ourselves & our family to His glory. We are not perfect & are actually a long way from it. We do however try each day to live our life for Him.

 

Each day I sing this song at least once. It's the name of our blog & will be the title of my book. So many people have asked why. I asked John to fix it where I could have it on my phone. He sent it to me Friday afternoon. While playing it for Mike, Marlee Anne said mom that's the song you always sing. So now I would like to share it with ya'll.

 

It's a beautiful song that means so much to Mike & I. It has reminded us why we continue this fight for our children & why we give God the praise.

 

Thank you Jason, Jeff & John Johnson for your lives, your friendship, your love & your prayers. Thank you for this beautiful song that has carried us through some rough days in the past 17 years. It has also been there with us through more often some awesome days!

 

 http://www.onetruemedia.com/shared?p=a9fdf7e4354e554b8aa494&skin_id=701

 

With thankful hearts!

Mike & Kelli

Abe's MRI results

Ok the Shriners update is not what is making me sick & upset. It's Abe's results. This is not something I am ready to talk about but people keep asking about results so here they are.

Yesterday I got a call from Dr. Goldstein. He started our conversation by saying he was very very sorry. Never a good thing. I remember taking a deep breath & thinking we have gotten bad test results before.

He said Abe's MRI has gotten worse. He said it shows atrophy (wasting away). Sometimes I think it's better not to know the meaning of words. However I know that word well. As soon as he said it I thought - no it cant' be. He went on to say there is evidence of  a progressive metabolic disorder.

He said he would send the results over to Dr. Shoffner so they could hopefully come up with a plan for supplements to help slow the progression. Immediately I thought what if we had not had a break in giving him CoQ10. What had I done? Have I  caused this progression? All I could think is I need to talk to Mo. I  need to hear her thoughts. I need to ask questions she & Dr. Shoffner will hopefully have the answers to.

When I hung up the phone it didn't hit me.  Slowly over time the truth began to sink in. It has hit hard. I have gone from being angry, to hurt, to sad, to scared. Right now I am thankful. I can only tell you that that came from God. I am so thankful to be thankful. However that may be different by the time you read this.

 

I am determined not to let Satan take my joy. God has blessed me with such an incredible family. I don't want to miss one minute of those blessings because I am worrying about things I have no control over. That is so easy to type & much harder to do. Even though this diagnosis has hit hard we will continue to serve the mighty God that we do. We will continue to allow Him to use us in whatever form & wherever He wishes. We have received hard news before. We were told Mary Elizabeth would not live past the age of three. We were told Michala wouldn't survive her cancer. We know that all this is in God's hands. He had this all planned out way before now. We will continue to rely on Him to carry us through this journey.

 

Now there is an urgency to find out how progressive it is. How much did it progress since the first MRI?

I am so hoping that when Mo gets back in town her thoughts will be different. I am praying for different  thoughts & a better outlook. I so hope they were read or interpreted wrong.

 

Please pray for Abe. Also for us as we come to accept yet another new chapter in our lives.

Shriner's appt update

Everytime I even think about writing this I get sick at my stomach,  start crying yet again & now I am shaking. I thought if I didn't write  it it would go away. Still this morning the reality is here.

Thursday morning we left to go to Shriners hospital at 5:30. I was  feeling really sick. My nerves I guess. The drive there was very nice.  It was beautiful to watch the sky slowly light up. God was painting  this glorious picture for us to enjoy on the way. They colors were 
amazing.

We got there an check in was great. Mike took Mary Elizabeth down to x-ray. While we were waiting on them they called us back, triaged  Michala & put us in a room. Mike got Mary Elizabeth triaged after her 
x-ray. He got her back to the room & it was time for him to go for his  conference call for work.

Mary Elizabeth was there for CP clinic. The doctor seeing her was  young. She was good & seemed knowledgable. She said that Mary 
Elizabeth's curve in her back had gotten worse but was still ok  without surgery. She said the good thing was that it was not the type  of scoliosis that would impact her breathing.

Next we waited for genetics. A new geneticist came in which I hate  only because I hate going over all those questions. I should have a  tape recorder. I think that's all suppose to be part of my healing & growing process. I think I was having a hard to mold day.

She was concerned about Mary Elizabeth curve until she saw Michala.  She said oh Michala's is much worse than Mary Elizabeth's. You know  just kinda of that more & more stuff coming in. She left & said Dr.  Saul would be back in. He is the one that discover the unusual gene 
mutation on Michala. I really like him.

Well he came in and said I know that Dr. Shoffner (metabolic  specialist Mo works for) has already told you what an unusually rare  family you have. He said obviously we want to find a link between the 
3 children but it doesn't look promising.

They asked us to enroll Mary Elizabeth & Michala in a study they are  doing. He said it may not help them but the information would help  others. We told him yes. They ended up getting blood from all of us  except Marlee Anne. They were great at getting the blood even though  it took about an hour to get it from Mary Elizabeth. Blood draws are  always stressful for us but it helped that we stayed in the room &  they came to us to get it.

The ride home was beautiful too. Everyone did great. Michala had had  enough about an hour from home & wasn't so happy.

I feel like I should stop here & start a completely different email. You know what I will just for my journaling sake.

Thank you so much for the prayers for our trip to Shriners.

WHEN?

I started this note earlier today. Originally it was going to be a blog post but I thought I should update on our two appts this week. Well at least a little I did. I didn't finish until tonight so it's quite the mixture.

 

Waiting on Abe to come back to day surgery. He should have been done with his MRI & in recovery by now. I am frozen to my chair & don't want to ask. Being so well in tune to me & my anxiousness Mike walks 
outside and ask. They are checking now.

As I sit here praying part of my prayer includes something I have been praying about lately. When do we get to the point that we say enough is enough. I am praying for God to clearly say ok we are here. We have  searched all we can to help Abe. Here is the child I have created.  Here he is. Take him, love & nurture him.

My head wants more. My head wants answers. My heart says enough. My heart has put him through enough.

I don't remember the exact moments or even years when we got to that  point with Mary Elizabeth & Michala. I just know the feeling of peace that came flooding over me when we said ok. It's ok. We will now choose to treat their symptoms instead of putting them through  unnecessary stress just to find answers. Especially if those answers are not going to help & are not going to change things. If it's  something they can do to help get answers or find a cure for someone else & nothing too stressful or painful is involved then ok. Other than that I am at peace with their lives.

For the most part I have good days. I love my family & I cherish the blessings they are. Some days that is overshadowed by seizures or all  the overwhelming medical junk. Usually insurance & medical bills & 
being tired from jumping through hoops.

Yesterday as I was talking to my niece I broke down worse than I have  in quite sometime. As I was crying Marlee Anne came to see what was wrong. I told her I was ok. She sat beside me, put her arm around me & 
said mom when Abe gets to heaven he will be fine. He will run & play & everything will be fine. It's like sometimes she becomes this wise adult sent to teach me so much.

Then just the other day she was talking about soon when Abe walks &  talks. She said she can't wait to hear his voice. She hopes & longs  for so much for him. A feeling I know oh too well.

I will admit this has been a very long & stressful week. I am so glad  we have those appts behind us. The ERG is something I never want to do  again. I know never say never. He cried & so did I. Today was just long.

We should get results in a few weeks. It hit me today that I really do not think I want to know. Who wants to know how imperfect, abnormal or messed up their child's brain is. We don't dwell on the negative & I 
am afraid this is what that will do. However if it gives insight as to  help with his seizures then ok I am ready to listen.

I pulled put my bulldog skirt a couple of times this week. It's now packed away for the weekend.

Tonight we were blessed with a visit from the UGA students from the Metropolitan Design Studio. Along with some awesome local friends. It was a fun visit & a great break from the stressful day. It was so nice 
of them to take the time to come by. It really meant a lot to us. More than any of them will ever realize.

That brings me to this & then I will stop for now. You know when you have that leading or tugging on your 
heart from God to do something - do it! You never know when you may turn someone's day or even their life around.

This week I received an email from a dear friend of mine, yes dear! She was sharing some thoughts to my 
Emory email. I responded back to her & just by her opening that door for me to share more with her it changed my outlook drastically. I went away knowing without a doubt she was praying for those specifics that I asked of her. A friend stepped in at the last minute to sit with the girls so that I could go with Mike & Abe to Emory. Another was a call from my precious friend telling me she loved me. Then a text from a prayer warrior in my life simple saying she was praying for me. Thing is all those things were perfect 
timing that could only have come from God's guidance.

Thankful for those in my life that listen to God's guidance & follow through to help carry me through this journey. Whether it's a facebook  message, a phone call, a text, an email, cookies, coffee, a card, a  pavlova or especially a quite heartfelt prayer - thank you! Praying I  will yield myself to God & be used for HIS glory.

more appts

I honestly wanted to title this email more crap. However my mom taught me that wasn't a nice word. So instead it's more appts. Any way you get the idea or you will after this email. I apologize in advance for the tired, stressed, shortness that I am trying to keep contained. I don't like feeling this way and have been working & praying hard to get my positive spirit back. Satan is working overtime & knows just the right buttons to push. This too shall pass!

 

Tomorrow Abe has to go to Emory for an ERG. Electroretinography (ERG) is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Doesn't sound too bad right?! Well I still have nightmares of when Michala had it done when she was a baby. I said ok about having it done with the agreement that if Abe has a hard time with it I can request them to stop at any time. I agree with Mike & Dr. Lipsky that it's great to have the info if it can be obtained easily. Please pray that it's not stressful on Abe or us for that matter. It can take any where from 2-4 hours by the time they get his eyes dilated & do the numbing drops.

 

After that we have to go over to Egleston for a blood gas draw to see how his CO2 is. Please pray that it has gone down. We hope to get an appt with pulmonology soon so that we can get this resolved.

 

Thursday Abe is scheduled for an MRI. Easy enough if it wasn't for his need for supplemental oxygen. Because of that he cannot be sedated. He will have to go through day surgery and have general anesthesia. I have filled out his precertification for surgery so hopefully we won't have to have another day for precert in the hospital.

 

I realize none of this is terrible & it all could be worse but it's my baby. My heart hurts to watch him endure all this. However I know it needs to be done. All this leads me to another topic for another day.

 

Thanks so much for your continued prayers & support.