What a DAY!!!

WHEW!!! Last night we got home at 8:00 from Abe's pulmonologist appt. On the way up there I remembered I didn't send out an email saying we were going & asking for prayer. I have to say this was an appt I was anxious about. I was hoping for answers, a little concerned about what those answers might be, & kinda hoping we wouldn't get answers.

 

Well first off I have to say that I never thought I would meet a pulmonologist that I liked better than Dr. Teague. He was Mary Elizabeth's pulmonologist for almost 15 years & I loved him.

 

Dr. Schoen, Abe's GI specialist recommended Dr. Kim to us. We all really liked her. She admitted she knew very little about mitochondrial diseases which is how Abe is still being treated until a more definite diagnosed is reached. I wasn't surprised that she said that but knew right away we had found a good doctor because didn't act like she knew about it.

 

She was surprised that Abe had not had a sleep study done yet. That is on the list to be scheduled. She also wants to do a bronchoscope to see just how floppy his airway is. She will also do a Bronchoalveolar lavage where she will put fluid in his lungs & then remove part of it to see if he has any type infection in the lining of his lungs. Since he is considered high risk she will not put him to sleep just for those two procedures. She will wait until he is having something else done. She is checking with GI to see if there is something they want done.

 

She was very detailed & went through lots of options. Lots we hope we don't get to. She sent us to the hospital for x-rays & lab work. She was concerned about his CO2 being elevated the last time but is hoping it was due to stress.

 

It was very long at the hospital but all went well. Once again I am so very thankful to have such a wonderful children's hospital near by with excellent staff.

 

While we were waiting to register my friend Gina walked through. She had her husband Brian are there with their son Tyler that I told ya'll about the other day. He had just had a CT scan because they thought his cancer may have spread to his brain. We are praising God that it has not. It was one of his medication making him talk out of his head. Please continue to remember Tyler. Some extra prayers for his mom Gina would be great too. She was so very tired. It's such a long hard road she is walking.

 

We stopped by the cafeteria to get us something to eat around 5:30 because we knew we would be sitting in traffic. Neither of us had eaten anything except a pack of crackers (hospital life once again it seemed) so the cafeteria sounded good. As we were walking out we ran into our friend Shannon. Hers & Mike's son Sam was there to be weaned off the ventilator. OH MY WORD!!! That boy is so very precious. Remember he is Abe's NICU buddy. Well he was in this bouncy exersaucer in his room. He looked at me & smiled & my heart melted. His daddy made him give me his mean look. I clapped & he clapped. Mike (his daddy) told me to pick him up so he could give me a hug, Vent tubes, pulse ox cords & all, here we go. As soon as I had him in my arms & asked for a hug he put those precious little arms around my neck & hugged me so tight. The tears flow again as I type this. So many thoughts and so many emotions. That little boy is a fighter & has come such a very long way.

 

Shannon walked us out to the van so she could get Sam's ball for him. As we drove off I said to Mike isn't he precious. He said yes & could you imagine if Abe could do that. He said Marlee Anne would be so excited. Those are things she wishes for he brother every single day. Just yesterday she said mom when Abe is able to sit up I am going to teach him how to...... I don't remember what she said because I was still lost in when he is able to sit up. So thankful but at times my mommie heart longs for more.

 

So now we start down a new path on this journey. Hurry up & wait I am sure. We would appreciate your prayers greatly. Please keep Ricky's family & friends in your prayers today too as they have his celebration of life service. 

little Ricky got his wings

Our sweet little friend Ricky has won the ultimate prize. He is in the arms of Jesus & no longer in pain. Typing that sounds good but my heart hurts especially for his sweet mama Shelli. I haven't told Marlee Anne yet. My heart is not ready for that yet. This cancer journey that God allowed us to venture into was not one I would have chosen. However the closeness we feel with the other families is one that we never would have experienced. The joys we celebrate with each other are truly amazing. The sadness & loss in unspeakable. We have lost many dear friends during this journey. Each one of them have taught me so very much. Their lives were not in vain. They each truly had a purpose. Just like little Ricky did in his short years on this earth. He is truly our Superman. Please keep Ricky's family & friends in your prayers!

playing catch up

Here I am once again behind in my journaling & I really want to catch up. So much has happened that I haven't shared. I don't know where I left off last. Oh yes with Disney & I didn't even finish sending pictures. I will do that soon!

 

Last week was spent finishing up Sweet Feet for Brody's March for Babies t-shirts. My sweet friend Kathy who is Brody's Aunt asked me to design & make their team shirts for the March of Dimes walk. Well I had a blast. I loved it so much. It was so much fun to spend that extra time with Kathy too. I have missed her this week. They did an amazing job raising money for March of Dimes in memory of Brody too,

 

Friday Marlee Anne & I got to go to the Presbyterian Church Preschool Cystic Fibrosis Walk. It was so much fun seeing the little children march and yell Cure Found. It was in honor for our friend Torianna & the sister of a little boy that is in Mackenzie's preschool class.

 

On Saturday all six of us went to GA Tech for the GA Great Strides walk for Cystic Fibrosis. It was really a neat experience. I was touch at how the common bond & cause made people rally together & seem like close friends. I met some very nice families. Several of our neighbors participated so it was fun to walk with them & get to know them better.

 

Marlee Anne & Mary Elizabeth really enjoyed it but Michala was the funniest. There were all kinds of dogs there. All shapes & sizes so she was in heaven. There was a little bitty Jack Russell that thought he could take on anybody. He sounded like he could. Then there was a huge mastiff that was the perfect height for Michala. There was Benny the little Pekinese that was way to hyper for Michala. We all fell in love with the English bulldog named Hero.

 

On the way home Mike & Marlee Anne went in the Rockdale Extension office for the bug show. Marlee Anne ate a chocolate covered cricket & became a member of the "I ate a bug" club. Mike & Marlee Anne both did the bug spitting contest.

 

I feel like there have been more activities I am leaving out. I will think of them & share them later.

 

We have been weaning Abe from his vigabatrin. He has been having an increase in seizures but not bad enough to stop the weaning process. The withdrawals he is having from coming off the drug however is horrible. That's bad enough to put him back on but if we don't push through we will never get him off. I can honestly say this has been one of those really hard times in my life. The kind that is wearing on my patience. I am trying to stop & pray each time I have such a hard time with it or rather when he is having such a hard time with it. Prayers would be greatly appreciated!

 

On a good note he has been a few days without oxygen. Occasionally he will drop. We are still scheduled for pulmonology next week. He is also much more active since the wean. Smiling at appropriate times not just when he is having a smiling seizure. He is getting very vocal too. Trying to focus on the blessings of getting off this med instead of the challenges.

 

Michala's seizures are increasing & we are not really sure why. Could possibly still have a lot to do with hormones.

 

Mary Elizabeth is doing well & we are so very thankful for that. Marlee Anne is counting the days until her next commercial shoot. No not really but she really did enjoy that. She has been very busy helping in the garden.

 

While I am asking for prayers could you please add our little friend Ricky. He is in his final days of his cancer. His family has brought him home to celebrate his life & enjoy these last days. Please pray for his family. This is one strong little boy that has taught me much in his short life. He is a dear friend of Marlee Anne's. While it is hard for her to let him go she knows without a doubt that God has him & he will no longer be in pain when he gets to heaven.

 

One last prayer please. Our friend Tyler recently decided not to endure anymore cancer treatment has a tumor on his back. It is pressing & hurting him very bad. He has agreed to radiation to help shrink it to give him some relief. Today he had two radiation treatments. The first was very painful & I haven't heard about the second one yet. He also has pancreatis & cannot eat. He is very hungry but his pancreatis is getting worse. His blood count was low so he had to have a blood transfusion today. Please pray that makes him feel better.

 

Sorry to throw so many prayer request your way but these two boys have been heavy on my heart along with their mommy's too. Thanks for joining us in prayer!

 

This email was typed in bits & pieces in between the screams so please overlook all the typos that I am sure are there.

 

 

quote

Friday I found a quote by Og Mandino. I was very moved by it so I looked him up & read more about him. I hope to get his book soon & read it. There are so many quotes of his I want to share but this is the one I chose for today. I hope you have a blessed day!

 

"Build this day on a foundation of pleasant thoughts. Never fret at any imperfections that you fear may impede your progress. Remind yourself, as often as necessary, that you are a creature of God and have the power to achieve any dream by lifting up your thoughts. You can fly when you decide that you can. Never consider yourself defeated again. Let the vision in your heart be in your life's blueprint. Smile!" -- Og Mandino, Inspirational Author

Marlee Anne's commercial

 http://www.youtube.com/watch?v=yeR3NjX3r3g Marlee Anne's commercial with Andy Irwin for savewaternewton.com. Current Events Productions did a great job as usual! Thanks ya'll

With a humble heart!

I know that my Mike wanted me to share that article. It's not that I do not want our story shared. I do! I want to know that my children's lives are not in vain. I want others to know what true blessings each of them are.

 

When they walked in our home to do the article on me my first question was why me. I could give them a list a mile long of mothers that are wonderful in my eyes.

 

As I tried to convey through the article I am a mother doing what any mother & other mothers do every day. Our challenges & activities are just a little different. I am not saying it's not tough some days. It is. But show me a mother that can't say they have tough days.

 

I am thankful for my husband that thinks I am a wonderful mom. It is my prayer that my children think that. It's my prayer daily that they know without a doubt that I love them.

 

Thanks to all of you that I have commented and shared the article with others. I am humbled that I was chosen by God to be the mother of four of His most amazing creations. I am honored to give Him all the glory!

 

Love,

Kelli

- A Mother's Day story of unconditional Love

- A Mother's Day story of unconditional Love

Day 2 - last ones

I hate to bombard ya'll with so many pictures. I will send more tomorrow. Hope ya'll enjoy them!

Day 2-1

 

Day 2

 

Day 1 - 2

 

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!