History

Monday, January 5, 2009 10:43 PM CST

Happy New Year! I hope everyone had a wonderful Christmas and New Year. We sure did. The kids had so much fun during their break. It’s fun to see Lily and Charlie play and fight and do all the things siblings do with each other. Charlie sure knows how to push Lily’s buttons just like a little brother should!

We had a wonderful Christmas Eve with my mother, brothers and their families. The kids played with their cousins and we all enjoyed a wonderful meal after church. We didn’t start opening presents until after Emma’s normal bedtime, but she was a trooper and did so well until I finally took her to my mom’s bedroom to sleep in the pack and play. She crashed hard. The other two kids had fun opening and/or watching other’s open presents until late! We didn’t get the kids home and in bed until almost midnight. I don’t know when Charlie has stayed up that late! It was evident that all of the kids were tired when they didn’t get up at the crack of dawn to see what Santa brought!

We made it downstairs by 8:30 on Christmas morning. We had fun opening presents and then made breakfast and sang Happy Birthday to Jesus with a candle in the cinnamon rolls that we made. The kids couldn’t wait to play with their new toys after breakfast and we had a mellow day figuring out how to work their new DS games. My mom came over for Christmas dinner and hung out until the kids went to bed. It was nice to be home for the holidays.

The week after Christmas was mellow. Lily continued to have sleep overs in Charlie’s room. They love to spend the night together. Lily camps out on his floor with a padded mat and many blankets. The only bummer is that Charlie NEVER sleeps in so he was waking Lily up every morning way before she’d wake up on her own. But they had a great time all break doing the sleep overs.

Saturday, January 3 we celebrated Emma’s first Bday! It’s so hard to believe that she’s already one! How is time going so fast? It makes me very sad because she’s our last baby and I don’t want the baby stage to end. Emma had fun digging into her cake but didn’t make as big of a mess as I thought she would. The weather was so nice (in the high 60s) that we were able to go outside and play. Emma was having a BLAST since she’s able to walk every where and get into the grass. It was a perfect one day break in the cold weather. We’ve had such a crazy winter – incredibly low lows and then these weird one day warm spells… I won’t complain, I’ll just enjoy them :0).

On Sunday, we took Charlie, Lily and my mom to see Annie on stage downtown. I think the kids really enjoyed it. John was anxious to get home to watch his Vikings in the play offs. We were sorry to see them lose.

Now Lily is back in school so we’ll be getting back into the swing of busy schedules. It was so nice to have the nice long break and now I have to get geared back up for school, sports and other activities. I guess I’ll start looking forward to Spring Break :0)

Wednesday, December 24, 2008 2:21 PM CST

I am continuing to be bad at updating these days. Here we are almost a month has past again. I guess those three kiddos of mine are keeping me hopping.

We’ve been having a lot of fun but again, some highlights:

Lily and Charlie were the flower boy and flower girl in our dear Abby’s wedding in early December. They looked fabulous and did a wonderful job. It was so awesome being able to be a part of Abby’s and Vic’s big day. Abby looked radiant, and the wedding was wonderful.

Lily had her Christmas music program at school. We took Charlie and left Emma at home. The concert almost didn’t happen. The school lost power because a poor Canadian goose flew into the transformer outside the school. Luckily, we were able to have the show even with temporary power.

Lily and I (Kim) went to see the Cheetah Girl concert with friends who have a suite. They invited 4 girls and the moms. It was a lot of fun.

Charlie continued to have home visits from his Kindergarten teacher, PT, OT and ST. He loves it when they come to the house for school.

Lily had her piano recital at a retirement home. It was a nice time and a lot of the retirees were there to listen as well. Lily did an excellent job and we were very proud of her.

We took all three kids to see Santa and to play around the mall for awhile. It’s been brutally cold here so it was nice to let Charlie have the opportunity to drive Blue and have some fun. Emma did great with Santa for about 2 minutes and then she’d had enough.

We took Lily and Charlie to see Suessical, a play down at Crown Center and it was very good. Even John commented how much he enjoyed it.

We all went to church last Saturday to help build dinners for families in need of a little Christmas help. It was great for the kids to participate and maybe get a little understanding of the spirit of Christmas and how truly blessed we are.

Now today, I’m just trying to get the last touches done for Christmas. We are celebrating Christmas eve at Grandma Ruisch’s house and then we’ll have Christmas morning with just us and then Grandma Ruisch will come over. It’s so hard to believe that Christmas is here. This year flew by so quickly.

Hoping everyone has a wonderful Christmas and that the spirit of Christmas is with you throughout the New Year! Much love and blessings!

Sunday, November 30, 2008 8:48 PM CST

Well, it’s been another 3 weeks since updating. We’ve been really busy and having a lot of fun. So I’ll just give you some highlights . Lily had her First Communion on Sunday November 9. We all went out to brunch with Grandma afterwards to celebrate. Lily was very excited about her new cross necklace.

Charlie had a movie date with his good friend Mackenzie on November 11. Mackenzie took the day off school so that it wouldn’t be too crowded because she knows how we worry about germs with Charlie this time of year. The kids had a blast and really enjoyed HSM III.

We had Charlie’s IEP meeting on Friday November 14. Charlie will start receiving homebound services. His Kindergarten teacher will come two hours a week as well as his PT, OT and ST. We are still working on getting “tv school” in place so he can participate daily with his class. Wish us luck.

On Sunday, November 16, Grandma, Lily, Charlie and I went to see Lion King on stage. It was an awesome production and we all enjoyed ourselves very much.

Emma started swim lessons the week of November 18. We go on T/Ths for ½ hour. It’s been fun so far and Emma is loving the water.

Some friends took me to lunch on Wed Nov 19 to celebrate my 41 bday. Thanks guys! It was a lot of fun and I do enjoy eating at North.

On Friday Nov 21 and Sat Nov 22, John took his big CFP exam. It was the culmination of a lot of hard work on John’s part studying and getting prepared. I really hope that he passed!

We took off on Wednesday November 26 to head up to MN for Thanksgiving weekend. It was nice to spend the holiday with John’s parents and his sister Mona and her family. Lily and Charlie have such a great time playing with their cousins Anna and Sarah. On Thanksgiving night, Lily went over home with Sarah for a sleep over and Anna slept over with Charlie. It was a wonderful trip.

Sometime over the weekend Emma got her first tooth! She’s almost 11 months old and is just getting her first tooth! She is adorable as always and busy busy. She figured out how to climb up onto a chair today. What next? The kitchen counter? She keeps us on our toes.

And that’s it for now. We head to Wichita next weekend because the kids (Lily and Charlie) are in Abby’s wedding. Abby was our nurse/sitter for a year and a half before she moved to TX to marry Vic.

Happy holiday season everyone!

Thursday, November 6, 2008 8:04 PM CST

It’s been a busy week or so. John and I started off by celebrating our 9th wedding anniversary on October 30. We didn’t do anything special other than having a fun dinner at home with the kids. Lily had piano and her Math Monkey class after school so we rushed to get through dinner and then to get the kids to bed. On Halloween, I took Charlie up to his school for his class Halloween party. The kids were so glad to see him and Charlie loved seeing them and being dressed up in his “Super Charlie” costume. He looked so cute. I brought him home and then rushed up to Lily’s school for her class party. She was an Egyptian queen this year and looked very Regal :0) After school the kids waiting impatiently I might add for Daddy to get home so they could eat quickly and get out there to Trick or Treat. Grandma came over for dinner and to answer our door so we could take the kids around the neighborhood. Charlie wanted to drive Blue and it was such a perfect evening. The kids stayed out for more than two hours. Charlie was so impressive turning, cruising and maneuvering with all the other kids running around. Emma made a cute black kitty and she made it for an hour and a half before taking her home and putting her to bed. It was a great evening!

On Saturday, Lily went to a birthday party and Charlie, Emma and I stayed home and played. Little Emma is on the go all the time. She has learned to stand up from sitting without holding on to anything. She’s also taken a few steps, but it’s hard to coax her to do it more. She is just into standing and being so proud of herself. She loves to play peek a boo and “how big is Emma.” She is truly a happy baby and we all love her a lot.

That night, John and I went out to celebrate our anniversary. We went to one of our favorite restaurants and had a really nice time. Then on Sunday, John and I went out with my mom, brothers and sister in law to celebrate my mom’s 70th birthday! We had another nice evening and I forgot how nice it is to go out to dinner without the kids. John and I both actually get to enjoy adult conversation without having to take care of a kid or two.

We’ve going with Lily to first communion classes. She’ll take her first communion on Sunday. How is my little girl growing up so fast!

I guess that’s it for now. You can always check out a ton of Sykora Family photos by going to http://sykorafamily.site.shutterfly.com/

God Bless!

Monday, October 27, 2008 5:53 PM CDT

Sorry that I didn't update sooner. We've been home since Friday night!!! Charlie did GREAT travelling home. He kept saying that it's good to be home. And I agree.

Charlie is doing well. Still only needing occasional Tylenol for the pain. He is truly my hero.

Thursday, October 23, 2008 8:35 PM CDT

Charlie did great and is happily watching a DVD with Daddy as I type. He went in for surgery at 10:30. He was pretty nervous and didn’t want to get a shot. That’s always his biggest concern (the IV). They were having issues with the IV and kept having to flush his port which caused him great distress! It always breaks our hearts and is seriously the worse part of the whole deal. It was my turn to go with him into the OR. One parent is allowed to stay with him until he is asleep and John and I alternate every time. Anyway, Charlie was his usual charming self. He told all the pretty girls that he needed a hug before he went to sleep – so all five nurses, doctors and assistants who were girls gladly obliged and said that he made their day. It was really cute.

We were finally called to come get Charlie about 12:15 or so. We were taken back into recovery. We were able to leave Emma in the care of Andrea (her daughter Sophia also has SMA and had surgery right before Charlie – she did really well too) and Sophia’s nurse Laura while we waited to see Charlie and get him back to his room. It was wonderful to have them here to help us out! Charlie was pretty scared when we got to recovery and in some pain. He wanted one of us to lie beside him and asked several times for some more medicine. He wasn’t happy because he said it was hard to open his eyes at first. Because surgery is done on his back, he is positioned on his stomach, face down. It causes some swelling in his face so I think his eyes were puffy. Anyway, after about 30 minutes of being there with him, we were ready to head back to his room. He even was able to take off his Bipap! He is doing so great. Although we did notice that he has a VERY loose front tooth. We think they knocked it loose when they intubated or extubated him. So we may have a visit from the tooth fairy soon! He played some computer and now is hanging out with Daddy watching some Rugrats while resting on his Bipap.

Our hope is to be discharged early enough tomorrow to hit the road home to KC! Charlie is such a trooper! Thanks for all your prayers – they worked again! God is Good!

Hugs and blessings ~ Kim

(I didn’t get this posted when I wrote it – so now everyone is gone but Emma, Charlie and me. Chars is trying to fall to sleep and Emma is sawing logs in the bathroom – we are on schedule to hit the road in the morning/early afternoon! Prayers that nothing goes wrong before then! To update between now and watching Rugrats – Charlie wanted to cruise around in Blue again so when Grandma and Grandpa got here, we all went down to dinner. Charlie has had so much fun in this big hospital with all the room to race and roll. We had to force him back into the room to get ready for bed! Good night all!)

Wednesday, October 22, 2008 10:21 PM CDT

We checked into the hospital in Madison WI today. Charlie is scheduled for his lengthening surgery tomorrow at 10. We follow his/our friend Sophia who goes in first. We had a good day today. John took Lily and Charlie for a swim before we had to head to the hospital. The kids love swimming with their dad and he’s so great at making sure it happens. I know it’s a lot of work to do by himself when I have to stay back with Emma.

We got to the hospital by 1 to check in. Charlie wanted to buzz around in Blue so the afternoon went pretty quickly. Emma napped in her pack n play while Charlie watched a little Bee movie, then it was back to cruising around the halls. Charlie did GREAT with getting his IV – it is the worse part of the whole day. Charlie is a very hard guy to get an IV started. Luckily, we requested Keana because he was the BEST last time and he was on duty with the IV team! He got it done on his first try so we were all relieved.

We had a quick bit to eat downstairs and then Charlie wanted to cruise around some more. We got to visit a little bit with Sophia but she didn’t feel like cruising the halls with Charlie. We also met another boy with SMA and his father. It’s always nice to meet new SMA families that we’ve never met before. Connor is here because he was having GI issues. I sure hope they can figure it all out and get him home.

I’m off to try to get some sleep. I’ll update tomorrow when I can! Extra prayers are always appreciated – think of Charlie as his surgery starts in the morning. Thanks!

Monday, October 13, 2008 2:39 PM CDT

Wow! Now I’m a whole month and a half behind on updating. I’m including an update I started way back on September 21…. But on to the update between then and now.

Emma had her nine month appointment a few weeks ago. We used to think she’d be our short daughter, but she is actually the same height Lily was at this age and believe it or not she is a few ounces lighter. I think that comes from how active she is – she is climbing, cruising and crawling everywhere. She eats a ton (but no more baby food for her) so she must burn it all off.

Lily and I went on her field trip to tag Monarch Butterflies. We were at the wetlands up in Lawrence (and may I say with all this rain, it was really wet). I had three girls in my group and they all were to catch at least one Monarch to take back to the tagging station. It’s actually pretty neat. All they do is record the sex of the butterfly and then they stick a sticker on the bottom of the wings that has a tracking number on it. Then the butterfly is released. It was a fun, wet adventure.

On October 1, Abby arrived from Dallas for a visit. She came up to walk in the Roefest Walk and Roll. It was nice to have her come early so we got to spend some time with her. She went with Charlie and me on his fieldtrip to the pumpkin patch. It was another fun day. Later that day, the first of John’s family started to arrive to stay the weekend for the walk as well. John’s parents, his sister and her family and his cousin and her son all came to walk with us this year. So we had 9 people in the house all weekend. It was very busy and a ton of fun. The walk went great. Charlie had so much fun buzzing around in Blue and leaving everyone behind. The rest of the weekend was spent playing and hanging out with the family. Most of the gang left on Sunday morning, but John’s parents stayed until Monday morning and Abby left Monday night. It was great to have everyone come visit, but it’s also nice to have the house back to our normal hectic selves LOL

Charlie went to school last Wednesday for the last time this winter. We were going to take him today and Wednesday but the school nurse said there is an up rise of upper respiratory bugs going around. We don’t want Charlie to be under the weather for his surgery a week from Thursday. We’ll head up a week from tomorrow to Madison. This time Lily will come too. She is off school next Thursday and Friday, so we’ll just have her skip a day and a half of school to make the trip with us.

John leaves tomorrow for Minnesota. He has an intensive study review class all week and won’t get home until Sunday. We’ll sure miss him (as well as the extra pair of hands around here all week).

Well that’s most of our update. You can read the one I started earlier below…. Please say some extra prayers for the SMA kiddos this year. Flu and RSV season has already hit so many of our friends. It’s going to be a scary year!!!

Sunday, September 21, 2008

Has it really been almost a month since I’ve updated? Why am I doing such a bad job these days. Could it be that Emma is so very busy? That I now go to Kindergarten three days a week? Or is it just that I’m in a rut and although I have the best intentions, I just don’t seem to get it done?

Lily’s birthday party was a lot of fun. She had 20ish kids to the roller rink for skating, pizza and cake. We all had a great time. Charlie didn’t want to drive Blue for some reason, so John or I pushed him around the rink. I actually appreciated pushing him because it helped me keep my balance – it’s been a lot of years since I’ve been roller skating! Lily had a great time and raised more than $550 for FSMA. She asked for donations in lieu of gifts this year and we are so very proud of the young lady she’s becoming.

Lily is enjoying second grade. She’s busy with soccer three times a week (practice, clinic and then games), piano, cheer class, Math Monkey and Brownies. It’s going to be a busy fall for her. Charlie’s enjoying Kindergarten and is making new friends. We had his bowling birthday party last Sunday with 25 five or six year old kids! It was crazy, but a ton of fun. Let’s just say that I’m glad I didn’t have the party at my house and that I didn’t have to clean up any of the mess :0) Charlie had a great time and I think all of the other kids did too.

Charlie had a playdate with one of the girls in his class the other day. Hannah is her name and Charlie thinks the world of her. There are actually so many nice kids in his class this year and they all seem to really like Charlie (of course, how could you not LOL). Charlie has had a few Miracle League Baseball games this fall. We go every Saturday until it gets too cold. He enjoys it, but he still would rather be home playing his computer or so he says.

Friday, August 29, 2008 3:26 PM CDT

Charlie stayed home from school today. He woke up yesterday with a stuffy nose and seems to be catching something. He hasn’t shown any signs of a fever, but it’s definitely a cold. We sure hope it’s going to be a short one! It’s really hard to have him sick after only 4 ½ days of going to school….

On a happier note, here is the update from Charlie’s Bday celebrations. Last Friday was his bday. We started the day by going to school. He was so excited to share his big day with his friends at school. They gave him a crown to wear all day as well as several handmade cards. At snack time, Charlie handed out home-made chocolate chip cookies (his choice) and then it was time for a quick recess and off to home. Charlie had a quick break on his pappy and then enjoyed the afternoon playing on his computer until Lily got home from soccer practice. Charlie wanted hamburgers, French fries, brownies and ice cream for his bday dinner. So we enjoyed a yummy dinner then we sang Happy Birthday and opened gifts. Charlie had a great day.

On Saturday, he wanted to take his friend Mackenzie and go to Chuck E Cheese’s for playing and pizza. Lily brought a school friend and Grandma Ruisch and Denise and Brent met us there too. The kids played games for an hour, ate pizza, had another cake and then we went home. Every time I go to Chuck E’s I remember why we don’t go more than once or twice a year!

On Sunday, we went to dinner with our extended family (Grandma, Aunt, Uncles and cousins) to celebrate Charlie’s bday again. He picked Macaroni Grill because he loves lying on the table and eating french fries. It was a good bday weekend celebration.

We are still waiting to plan his class party so he’ll be celebrating once again. Lily’s birthday is the Sunday (and she’s been counting down the days all week). We’ll have her skating party for her classmates on Monday so she’s very excited for the weekend.

I hope everyone has a great Labor Day weekend and keep Charlie in your prayers. We hope his cold is gone quickly.

Thursday, August 21, 2008 10:46 PM CDT

Ok – here it is the night before Charlie’s BIG FIFTH birthday and I just realized I have so much to update on. We’ve been really busy and having loads of fun. Both Lily and Charlie started school. Lily started second grade a week ago today! And Charlie started KINDERGARTEN on Monday! He will be going three mornings a week (with me in tow). There are 18 other kids in his class, so it will be interesting. So far it’s going well and he really likes it. But it sure wears me out LOL. Lily is really enjoying her teacher this year. Her teacher, Mrs. R was a first grade teacher last year so Lily already knew that she really liked Mrs. R. Lily was jumping up and down when she found out she was having Mrs. R as her teacher. She was a little sad to learn that she wouldn’t be in class with some of her good friends, but she’ll still see them and she’ll make new friends. Charlie was also very sad to learn that his friend Mackenzie wouldn’t be in class with him either. All of his friends from PS are going to full day K so they won’t be in his class. But we’ll see them at recess hopefully.

Here are some highlights of the last few weeks:

We all went to the Royals baseball game. We were able to exchange our tickets for handicapped accessible ones and the seats were great. Charlie lost interest pretty quickly though. He was more excited to walk around and check everything out. Lily had fun eating her way through all the fun food at the park. Before the game, we went to the kids’ area and did a few fun things. Charlie kept saying he wanted to go back there – but it was only open before the game started. I think watching baseball was boring to him – he must take after Grandpa Sykora :0) John was very sad that he didn’t get to watch much of the game because the Twins were here playing the Royals – and John LOVES the Twins.

We went to the Butterfly Festival out at the arboretum. The kids had a great time and really enjoyed the caterpillar area. They were able to touch some really interesting caterpillars as well as hold them. Charlie’s face was screwed up and he wasn’t too sure he liked it when they were crawling on him. Lily was much braver! I have some funny photos I’ll post soon. They both learned how to hold a butterfly and were able to hold a Monarch. Charlie enjoyed opening his fingers to let the butterfly fly away.

We went to Rally Day at church. They had a bunch of water activities, games and lunch after church. Both Lily and Charlie got WET (as did Daddy). They played the water bucket game and both got hit! And then they both stood under the water balloon popping machine. It was amazing to see how much water pours out of a water balloon. Luckily, Charlie kept his mouth shut and didn’t breath in the water or we would have been in trouble.

The weather has gotten nicer here and we’ve been enjoying taking walks around the neighborhood. It’s good to see Charlie back in Blue more.
A short update on Emma – she’s growing up too fast. She’s pulling up and crawling everywhere. She is one busy girl. She wants to eat everything that is on the “big people” plates. She is such a smiley girl and very happy. She brings us all such joy. It makes me sad that she is growing up so fast.

I think that’s the major things that we’ve done. I’m sure I’ll update more after our celebrations start. We have Charlie’s bday tomorrow and Lily’s in 10 days! So we’ll be celebrating for a long time. Lily’s party is on September 1 and Charlie’s is still being planned. So once again, we’ll have the month long celebrations! But with such milestones how could we not.

Saturday, August 9, 2008 10:24 PM CDT

WOW! Is it really August already. Where did the summer fly? Lily’s already been at her sleep away camp and is home! Man, did we ever miss her. She left a week ago Wednesday (July 31) with Daddy to go to Kanakuk Kamp at Table Rock Lake. It’s about a 4 hour drive and it’s on the lake that I grew up going to as a child and even into adulthood. Lily was in the cabin with a school friend so that was good. Dad dropped her off and then drove home. I couldn’t sleep the first night thinking of Lily and wondering how she was doing sleeping away from us in a cabin in the middle of the woods. We weren’t allowed to call her – only send emails and write letters and the only way Lily could communicate to us was through letters – she couldn’t even email us back. It was a long week for us and we missed her very much. Every night, Charlie made sure that we sang our songs to Lily and said the prayers with her names too just like we do when she is home. Charlie make lots of pictures to send her and dictated emails to me to send to Lily. John left on Tuesday night to stay over closer to kamp since the closing ceremonies started at 7:30 am. I was so jealous that he would see Lily in the morning. The rest of us had to wait anxiously for them to get home late afternoon on Wednesday. Lily seemed to have a good time but she said she was so glad to be home. She’s not sure she wants to go back next year – she thinks waiting another year will be easier to be away. Her friend on the other hand wants to go to the two week kamp next year LOL.

During the week that Lily was gone, it was a horribly hot week – the hottest of the year. So we mostly hung out around the house, although we did meet Charlie’s friend Mackenzie and her mom and brother at the pool one afternoon. Daddy, Emma, Charlie and I enjoyed playing with them in the cool water and being out of the awful heat. Other than that we laid low.

On Friday morning, we took Charlie and Lily to see WALL-E. We all enjoyed the movie! Emma was able to stay home so that made it easier. Tonight, we went to the Royals Game. They played Daddy’s favorite team – the Twins. Charlie was ready to go home after just one inning. Not sure he’s the sports loving fan that Daddy would love him to be! We stayed until the 8th inning and then headed home. The Twins won so John was happy.

It’s hard to believe that Lily starts school on this coming Thursday and Charlie starts a week from Monday. Then we’ll have Charlie’s FIFTH birthday on August 22 and Lily’s SEVENTH birthday on August 31. I still have to plan those two parties! My baby boy and girl are growing up! Emma’s already more than 7 months old too. Time is slipping through my fingers way too fast.

Well, that’s the update for now. Hope everyone is enjoying the last of the summer. School for us is just days away!

Friday, July 25, 2008 5:08 PM CDT

Thursday, July 24, 2008

Whew! What an adventure we just had. I’m sitting here on the couch trying to relax and play catch up, but of course, I hear Emma crying to get up. I have a lot to share about our last week and a half.

Here is a recap of our trip out west.

Last Tuesday, we headed out to Colorado for a vacation. We couldn’t make it all the way because Charlie doesn’t do well in the car over 6-7 hours. So we stopped in Burlington, Colorado. We must look like we are moving in for a month when we check into a hotel. One of these trips I should take a photo of the luggage cart with our bags and Charlie’s medical equipment piled to the top. Not to mention, Charlie in his wheelchair, Emma in her stroller and the rolling cooler that we always have! I’m sure we are a site. And people look at us when we say we are only staying one night LOL. After setting up the room, we ordered Pizza Hut for dinner. I have to tell you it was the WORST pizza we’ve ever had. You would think that ordering from a chain pizza place would be pretty safe. But it wasn’t! John made a trip across the street for some ice cream to make up for the awful dinner we all choked down!

We arrived in Louisville (a suburb of Denver, just south of Boulder) on Wednesday afternoon. We reserved a two bedroom suite for a week. After quickly unloading, we headed to the hospital to see Aunt Mary (John’s sister) who had a baby boy the day before. Abraham Robert Sznewajs – try that name on for size. I still have a hard time spelling that last name! But what a cutie. Mary looked great and the kids loved holding a newborn again. Abe is adorable with a big bunch of dark hair. After that visit, it was back to the hotel to gather our senses and then it was off to Aunt Kara’s (John’s other sister) and Uncle Mike’s for dinner. Grandma Sykora was there with Mary’s two older girl’s Claire and Hannah. Kara and Mike have three young kids too – Henry who is Lily’s age, Maria and Carrie. So quite a crew to feed with the five of us showing up too. The kids started playing right away and had a great time. John and I were exhausted by the time we got the kids to bed that night.

Thursday, we decided to head up to Estes Park for the day. The kids enjoyed the ride and all the pretty scenery. We went up to Sprague Lake in the Rocky Mountain National Park to walk around and enjoy the mountains. The kids saw a cool beaver damn as well as loads of flowers, a trout and chipmunks too. We also saw a few elk and a deer on the drive in the park as well. We ended up spending the whole day on that and came home to order a quick pizza before the kids watched a movie in bed.

On Friday, we met up with Kara, Grandma and the cousins at the aquarium in downtown Denver. The kids had fun seeing all the fish, sharks and otters. We then had lunch there before heading home for a short nap/break. Then that evening, everyone came over to swim in the hotel pool and we carried out Mexican dinner. All of the cousins have so much fun playing together.

Saturday we went over to Aunt Mary’s house for dinner! She really wanted us to come over and said since her Mom was there as well as Tim that it wouldn’t be too much work – but she did just have a baby 4 days earlier! Tim made us wonderful ribs and Grandma made yummy salad, baked potatoes and rhubarb cake. It was a fun time. Lily and Claire tried to convince us to let them have a sleep over. They had so much fun running around and playing. Charlie was set up on the computer so he was happy as a clam too.

On Sunday, we into Lakewood to see my Aunt Barb, Uncle Bill, her son’s Billy and David and their wives Des and Miwako. We also got to see my Aunt Diane’s step daughter Amy, her husband Ryan and their son Colin. So it was a big crew. We had fun catching up and Lily had a blast running around with Billy, Des, Ryan and Colin – And we were worried that she might be bored with no kids her age around (Colin is almost 3). Boy, were we wrong. Aunt Barb is one cool Great Aunt! She let the kids (Charlie and Lily) play with squirt guns in the house! Lily and Chars sure thought that was too much fun. We had a wonderful lunch and hung out at the house until dinner time. Lily got to go for a ride in Aunt Barb’s green 1971 slug bug! She thought that was too much fun too. They went up to quick trip for a slushy! I have to tell you that the second that we came in the door, the kids were offered popsicles. They knew right then that Aunt Barb’s house was going to be fun. We grabbed Subway on the way home and the kids watched a show before crashing. We’ve been staying up way too late and with no naps, it’s catching up with us all.

Monday we made plans to get together with Kara and her gang, Grandma Sykora and Mary’s girls (Mary and the baby were staying home). We went to the Butterfly Pavilion. It was so cool. We got to sit through a fun bee presentation and then went into the insect room. There were all sorts of bugs and spiders and a tarantula! The kids all held “Rosie” believe it or not! I was very proud of Charlie and Lily for holding that ugly spider. You should have seen some of the bugs in there! So many huge cockroaches from all over the world as well as crazy huge spiders (all of these things were LIVE, not dead ones). It was impressive. There was also an area were the kids were able to touch a star fish, a horse shoe crab and a sea urchin. Then it was off into the butterfly area. There were so many beautiful butterflies in the very HOT, HUMID room :0) The kids all hoped that some of the butterflies would land on them too. After we were done there, John had the great idea to go to the bowling alley. It was crazy! When you have 8 kids all under the age of 6 with the youngest being 6 months, you need many more adults than we had! I think everyone had a good time, but we all agreed it was silly trying to fit so many things into one day. Our family needed to be home by 3 at the latest so we could give Emma a nap and Charlie some pappy time before heading over to John’s college friend’s house (Ann and Mike both when to college with John). We met up with them at their beautiful house in Lakewood. They have two daughters, Emma who is 5 and Betsy who is a week younger than Emma. Lily and their Emma quickly became inseparable and had fun working on a fashion show for us to watch after dinner. John helped grill some chicken before Mike got home and we had a yummy dinner and a wonderful visit. Before we left, we enjoyed the girls fashion show. It was great meeting such nice friends of John’s from his college days.

Tuesday was another fun day but also our last day in Colorado. We met up with my Aunt and Uncle at Casa Bonitas. It’s a Mexican restaurant that is totally geared toward kids. It’s like stepping back into a Mexican town. They have people diving off “cliffs” into the ocean, gun fights, puppet shows among other entertainment and shows. We were warned that the food was somewhere between Banquet frozen dinners and Taco Bell, but with expectations so low, it really wasn’t bad. Charlie and Lily enjoyed all the action and entertainment. It also helped that Des and Amy were there too to help keep them occupied. We dressed up and took an old fashioned photo – which was cheesy and fun! I’ll scan it soon and post it sometime soon. We spent three hours there and had some over stimulated kids by the time we left. We had some down time before Mary, Tim, Grandma and the kids came over for a quick dinner and running around the hotel. It was a wonderful way to end our trip!

We headed out Wednesday morning for home and made it to Abilene, KS. After carrying out Dairy Queen, we had a mellow evening watching some TV and then hitting the sack. We are ready to be home!

Now it’s Friday, July 25 and I’ve finally finished this loooonnnggg update with probably too much information. But thought I’d share our fun vacation! You can check out photos on http://sykorafamily.site.shutterfly.com/513 I find it easier (and I’m lazy) just posting all the photos there.

I can’t believe Lily leaves next week for a week long SLEEP AWAY camp! Then a week or so after getting back, Lily and Charlie start school! Where did the summer fly to?

Friday, July 11, 2008 10:53 PM CDT

Ok I am way behind on updating and so much has happened in the last few weeks. Just today, I took Charlie to a SMA Swim Therapy group. It was so much fun. They’ve been having the group swim every Friday since end of May, but this is the first one we’ve been able to make because of Charlie’s surgery, healing time and then travelling. There are a few more Fridays left of the class and we are sure to be there when we can! It was fun seeing Brett, Turo, Lindsay, Lauren and Claire – all SMA Friends from around town whom we never see!

In the past few weeks – here is what’s been going on…

Yesterday, Charlie got to go over to his friend Mackenzie’s house for a playdate. She and her family had been out of town for a few weeks so we’ve missed seeing them. We are lucky to have such great friends like Mackenzie and her mom and we will miss them when the inevitably move (hopefully it won’t be for awhile).

We spent the 4th of July weekend in Tulsa visiting Emma’s Godmother Debbie and her husband Buddy and her FIVE kids Beaude, Bailey, Sophie, Will and Mac. The kids had so much fun and I don’t think I hardly saw Emma or Lily when they were awake. The kids were great with Charlie too – playing loads of computer games as well as a couple sessions of Wii competitions! We had a wonderful time and John, Lily and I even got the chance to ride one of their two horses in their back yard. How fun is that! We left Tulsa (Bixby actually) and headed to Wichita to see Abby, Vic and her family. We joined Abby and a ton of her relatives on Saturday night at her mother’s house to help celebrate her Grandpa and uncle’s birthdays. It was great seeing Abby and her family again. We headed home on Sunday after a quick visit at the hotel from Abby and Vic.

The weekend of June 27 was a small KC Gathering of some SMA families from KC, Oklahoma, IA, MO and even KY and MONTANA!!! There were about 30 adults and 20 some kids. We went to a park and had a BBQ. John was wonderful and did all the BBQing. Saturday morning we all met up at Deanna Rose Farmstead and then Saturday night was bowling. Unfortunatly, Charlie had to miss it all. He woke up Friday and had an incredibly high heart rate. We watched him all day, took his temp constantly, but Charlie acted totally fine. But with that high heart rate, we couldn’t take him out. We left him in the care of our trusted sitter because we had all the meat for the BBQ and john was suppose to cook. When we got home from the park, Charlie had a fever (we knew it was coming). He had a fever all the way through Saturday night with no other symptoms. It was just a bummer that he couldn’t go to any of the fun events. He’s been fine every since.

The weekend before that, Charlie had a birthday party for his friend Carter from preschool. They invited the whole family, so we enjoyed time in the pool and great pizza, cake and treats. The kids had so much fun in the pool playing with some of Charlie’s school friends. Unfortunately, Charlie must have had water in his ears from the pool because on Tuesday after complaining his ear hurt, we found out he had an outer ear infection. He then was put on a course of antibiotic ear drops for 14 days. He got better quickly, but we are now using swim ear after he’s in the water to avoid any future ear infections.

The rest of our update includes:
• Charlie’s second miracle league baseball game although he didn’t last long. The humidity was too much.
• Charlie was out and about in Blue finally for about two hours! But it was gorgeous, in the 70s with no humidity!
• Grandma and Grandpa Sykora came in town for a visit and for Grandpa to play in a golf tourney with John.
• Lily and Charlie had church vacation bible school – Lily loved it and went all week – Charlie – not so much, so he only lasted two days.
• Lily’s softball is going strong and she is playing well.
• Lily’s been enjoying a few weeks of camps including ceramics, masterpiece art and an American Girl class
• Emma is scooting all over the place and is so much fun. She finally started on solid food and advance quickly to pancakes and vanilla wafers thanks to her Godmother. Hard to believe Emma is already six months old! Time is flying too fast.

I think that updates the main events although I’m sure I’m missing a lot since I’ve gotten soooo bad at updating.

I have a ton of photos to upload and will share soon.

We are headed to Colorado next week to visit John’s sisters and their families as well as my aunt/uncle and cousins… will update when I can.

God Bless!

Sunday, June 15, 2008 1:17 PM CDT

Happy Father’s Day to all the Dads out there! We haven’t celebrated with our daddy yet because he got up really early to play a round of golf. We hope he’s having fun.

We’ve had a great week. The last of Charlie’s surgical tape has come off his back. So a few more days and we should be able to get in the pool! Charlie talks about it every day.

Yesterday, Charlie played in his first Miracle League baseball game. He absolutely loved it! He is very protective of his new blue “M” hat and Miracle League shirt. There is only two more weeks of the season, so I’m mad at myself for not getting my act together sooner to let him play. Our friends Kristal and Brett told us to do this years ago!

Lily’s been having fun playing on her softball team this year. It’s coach pitch this year so it’s been great watching the girls learn to bat. She’s also been having fun playing with her friends and having sleepovers. A few weekends ago she stayed at Grandma Ruisches the whole weekend! We sure missed her. Charlie and Lily have been having a lot of sleepovers in Charlie’s room. They both love it and ask to do it every night they can. I love how good of friends they are.

Charlie and Lily had a fun playdate with Charlie’s friend Mackenzie last week. Lily asked if she could join the fun and Charlie was nice enough to let her. We love our friend Mackenzie and are blessed that Charlie has such a dear friend like her.

Emma is keeping us jumping just like Charlie is – they want something all the time. Speaking of which, Emma is crying. So I’ll post more later! The kids have Bible Camp starting tomorrow!

Ok – back for a quick addition. I’ve started a webpage to share photos on shutterfly since I’m so bad at updating the sites (they take more work). So check out http://sykorafamily.site.shutterfly.com/ occasionally to see lots of photos.

Sunday, June 8, 2008 9:26 AM CDT

We’ve been home from Charlie’s surgery for a week and a half now. Charlie’s doing great and hasn’t needed any pain meds for his back for a long time now (I think he wanted to stop even Tylenol the day after we got home). He is really much stronger and braver than I would be LOL. We’ve been hanging close to home while his stitches heal. They really itch and the doctor’s suggested leaving the original bandages on for two weeks if possible, so I think he’ll feel much better once we can change those dressings out. Lily’s been staying busy playing with friends. She’s had her first two softball games and is doing great with that.

I can’t wait until Charlie’s incision is healed so that we can all go to the pool again. It’s been really hot here lately and the pool sounds nice. We took the kids bowling last weekend to get out of the house. They had fun and Lily even had a few strikes which made her very happy.

That’s our quick update. I hope everyone is enjoying summer break.

Wednesday, May 28, 2008 10:29 AM CDT

We will be heading home as soon as the rounds are over!!! Yippee! Charlie is our hero!

Thanks for all the prayers and support.

Isaac is doing well to -- still a ways to go before he can leave, but he is doing good!

Tuesday, May 27, 2008 9:18 AM CDT

We just got word at 9:10 that they were just finishing up with surgery and that Charlie did great. They will close him and hopefully we’ll be up to see him in recovery in 30-45 minutes! Yeah! The nurse said it took so long because they wanted to get another IV line started as a back up and they had a hard time getting one started in the upper extremities (the one they had from last night was in the foot). Will update more later :0)

Tuesday, May 27, 2008 8:50 AM CDT

Update…Ok – here it is 5 minutes later and we were just told that Charlie’s surgery was started….

Here we sit at 8:41 a.m. waiting to hear if Charlie is even started with his surgery. We left him 51 minutes ago after he was put under. I know it always takes awhile to get him positioned correctly so they can start, but this is almost the hardest waiting period. I sometimes can’t believe that Charlie will continue to have to undergo this surgery every 6 months for many many years to come. He seemed a little more nervous this time than last – but that probably comes with age and the knowledge of what he’ll feel like after surgery.

Emma did really well in her pack n play last night at the hospital, but between Charlie and her I didn’t get much sleep – but I wasn’t expecting any. Our friend Isaac and his family were on my mind. They weren’t able to get the IV in Isaac which is so important for our SMA kids and Isaac especially since he has blood sugar issues. We even asked if the surgeon would take Isaac first, but they said they wanted to keep things as they were. I can remember how scared we were when Charlie got his rods placed and I really feel for his family. The waiting is almost the worst part.

I’ll update when I can, but again, we don’t even know if the surgery has been started. Just keep Charlie and Isaac in your prayers.

Monday, May 26, 2008 9:20 PM CDT

Well, both Emma and Charlie are asleep so I have a moment to update. We checked into the hospital around 2 and ran into our friends Isaac and family. Isaac is having his first growing rod surgery tomorrow right after Charlie. We didn't get to talk much, but it was nice to see them. So please add Isaac to your prayers.

The hardest part about today is trying to get an IV line started so he can have the TNA (total nutritional vs. just typical IV fluid). Well, after one IV specialist tried and failed, she went to get her partner. We feel so lucky and blessed that he was able to start the line in his foot with little pain. Charlie was so scared and worried about being stuck too many times. He was very brave.

We are scheduled to go into surgery at 7:20. Keep Charlie in your prayers.

On a happier note, I'll update a little about our visit in Minnesota. On Friday, we were able to surprise John with a 40th bday party! We invited several OLD HS friends as well as other friends and extended family. I can't believe we pulled it off. John was really surprised and it was a nice time. John also got to play some golf with his dad earlier that morning so I think he had a fun 40th birthday!

While John was golfing, the kids and I as well as Grandma Barb got to have a nice visit with Andrea, Sophia & Lila Doebbert, Nurse Laura and Lynn Denk! It was great to finally meet Lynn (she lost her daughter to SMA almost two years ago and we've talked via email before then...). Charlie had fun playing with his friends and enjoyed being around all the women as usual :0)

All day Saturday was spent with cousins Anna and Sarah, Aunt Mona and Uncle Rick. Lily even had a sleep over with Sarah and Charlie had a sleepover with Anna from Friday night. It was too much fun. We went to a lake in down town Minneapolis for a nice walk as well.

I'm rambling now, but that's the basics. Now, we are just hunkered down for a quick, successful surgery and a safe trip home. I sure hope it's as smooth as the last surgery in October.

I'll update when I can! Hugs and blessings ~ Kim

Friday, May 23, 2008 3:26 PM CDT

Just a quick update to wish our wonderful Daddy and Husband a Happy 40th Birthday!!! We made it safely to MN and will be celebrating tonight with his family (yesterday was Auntie Mona's bday so it's a twofer).

Will update again after surgery about the fun we are having here (meeting up with some SMA friends) etc.

HUGS!

Wednesday, May 21, 2008 3:06 PM CDT

I just wanted to shoot off a quick update. These last two weeks have been a blur. I thought the easiest thing to do was to bullet some highlights since I should be packing for our trip.

• Lily had her end of school year music program. Charlie loved singing a long.
• Lily and her daddy went to a daddy/child event and had so much fun.
• Lily did so great in soccer this spring! Her last game was last weekend. She has really come a long way and we are so proud of her.
• Charlie has been going back to school two days a week and is having a blast. He loves being with the other kids and they are all so wonderful. He’s made great friends.
• Today was Charlie’s last day of Preschool. They had his graduation early since we won’t be here next week for the end of the year.
• We had Charlie’s IEP meeting for school and he and I will be attending Kindergarten three days a week next year! I can’t believe he will be in K!!! We should have fun.
• Our wonderful Abby graduated (and passed her RN test). We went to her graduation and luncheon. It was so bittersweet. We are so proud of her, but will miss her so much. She is such a part of the family and we are so use to seeing her several days a week or more!

We also had some devastating news. Our SMA family lost yet another wonderful little girl. Lily B was almost 7 years old. We had the privilege of meeting her and her wonderful mommy several times in the last few years. They were such an inspiration and an incredible team. Lily died unexpectedly and it really hit me hard. Amy (Lily’s mom) and Lily’s grandparents are in our thoughts and prayers.

It’s so hard to believe that we leave tomorrow and by the time we get home, Charlie will have had his second spinal rod lengthening surgery. We will head up to Minnesota for a long weekend with John’s family. Just in time to celebrate John’s 40th birthday! We have to be in Madison, WI to check into the hospital with Charlie on Monday. Charlie’s surgery will be on Tuesday. Our dear friend Isaac will be having his initial surgery to place the rods on the same day in Madison too. It will be nice to see them! Please keep Charlie and Isaac in your prayers. As well as Sydney – another SMA friend who will be having surgery on Thursday in Madison as well. We are all from different parts of the country (MI, TX and KS) yet we all meet up in Madison, WI to make sure we have the best care for our kids. What a testament to Dr. Mary Schroth. She is one of the BEST doctor’s in the world when it comes to dealing with SMA.

OK – enough procrastination. I’ll update about Charlie’s surgery when I can. God Bless!

Sunday, May 4, 2008 2:52 PM CDT

Just a quick update. Lily had her piano recital last week and did a wonderful job! We were so proud of her. She also had her school music program. We left Emma home with a sitter and the rest of us enjoyed the wonderful show. Lily did such a great job and we loved hearing her friends sing songs from musicals like Sound of Music, Wizard of Oz and Mary Poppins.

John and I went to one of my best friends weddings last weekend. I was a bridesmaid. The wedding went off without a hitch and was so beautiful. We took Emma to the reception because she’s been giving sitters a hard time – not wanting to take bottles and such. She’s finally getting better.

Our Abby took Charlie to school on Thursday. It makes it that much harder that she is leaving. There isn’t another person other than John whom I would trust to take him to school if I am not there. Abby leaves next weekend to move to Irving, TX to join her fiance and get ready to start her new job. She will come back for her graduation on Saturday, May 19. We are all very sad that she is going to be gone . . . She took Charlie and Lily to see a movie on Thursday night. Again, another BIG thing :0) They had a great time.

Lily had two soccer games this weekend and even scored a goal yesterday. She is really becoming a great playing. Hopefully, we can all go see her tonight. Today she is with Daddy all day at a school function (lunch and a play) so Charlie, Emma and I are just hanging out. Charlie loves to play on his computer so he’s been entertaining himself. I’m surprised he hasn’t begged me to play Wii. It’s a daily ritual to play Wii and both older kids love it.

I hear Emma is up from her nap -- so just a short update. Check out new photos on his www.our-sma-angels.com/charlie site under photos under Charlie Age Four!

God bless everyone.

Tuesday, April 29, 2008 2:12 PM CDT

Charlie and I went back to school yesterday. It was so much fun. All of his friends were so excited to see him and Charlie was so happy to be back. It was a fun day. We are going to start taking him twice a week until we have to leave for his surgery at the end of the month. He'll miss PS graduation, but his teacher said we could have his graduation before we leave town. I can't believe Charlie will be in Kindergarten in the Fall. Where does time fly.

We've had a fun few weeks. Charlie has been having a few playdates with his good friend Mackenzie. And Lily has been busy with school, soccer, gymnastics, cheer and piano. She had her piano recital last week and did so wonderful. She is becoming quite the pianist.
It is with a heavy heart that I share we've lost another SMA friend. Skylar Elizabeth Saranchuk joined our other angels in heaven yesterday. She was 7 years and 10 months old. We admired her and her mother greatly. We send them love and sympathy....

Here is a link to a photo montage that our friend MJ (who is FINALLY out of the hospital) made . . .

http://www.onetruemedia.com/shared?p=5ad9225f653b0a8e228282&skin_id=1605&pid=624&utm_source=otm&utm_medium=text_url

God Speed Angel Skylar!

Friday, April 4, 2008 6:26 PM CDT

Sunday March 30, 2008
Today, Abby and I took Charlie to his friend Ben’s birthday party. It was at Pump it Up (they have giant inflatables). Charlie had so much fun, but Abby and I are pooped. We took Charlie in both of the jump houses and he was laughing so hard. But it was so tough getting him in and out of those. Then I helped push Abby and Charlie up a huge step ladder to take him down the big slide. Thankfully, once was enough for Charlie. We are all tired. Charlie fell asleep the second his pappy was on (even though he wined and said he didn’t want to take a nap LOL).
Lily had her second soccer game of the weekend. We stopped by on the way home from the party and I was able to watch a little of the game! She did so well. I’ve never seen her be so aggressive and play so well. She was a star today for sure.

Friday, March 28, 2008

We took the kids bowling today. The kids had a good time and even beat me – I played so poorly LOL. It’s the last official day of Spring Break for Lily. It’s been a fun, but long two weeks. It will be hard to get back in the school routine thought :0)

Monday, March 24, 2008

We made it home today and found that the Easter Bunny left eggs and baskets for the kids to find. We had a fun time hunting eggs and seeing all our Easter basket goodies. Then it was back to reality and unpacking . . . It’s good to be home.

Sunday, March 23, 2008

Today we got up to go to church. It was freezing and such a shock after the gorgeous weather in Florida. We went an adorable little Lutheran Church for Easter service. The congregation was so welcoming. It was a nice way to spend Easter away from home. We got on the road after church and made it to Mount Vernon, IL. Tomorrow we’ll make it home.

Saturday, March 22, 2008

Lily awoke and started crying because she was so sad that we were leaving. It was a magical week and everyone was sad to leave. We packed up the car, cleaned up the house and got on the road to head home. We made it to Dayton, GA today. We plan to stay here and go to church tomorrow for Easter.

Friday, March 21, 2008

Today is our last full day in Florida. We gave the kids the choice of what park they might want to go to, but they decided to go back to Magic Kingdom. They love riding all the rides. It’s the best part of Disney – they allow us to hold Charlie on so many rides. Last year, when we went to Universal there wasn’t even one ride Charlie could do. So the kids love Disney. Again, we spent the whole day going from one ride to the next. It was a great last day in Florida.

Thursday, March 20, 2008

Today we went to Sea World in the morning. We saw the Dolphin show and the Shamu show. The kids also fed the sting rays and Charlie got to feed the Sea Lions. Lily had a blast jumping on this trampoline ride. The put her in this belt that was attached to two large bungee cords and then bounced her on the tramp. She loved it! We also saw the sea turtles and the penguins. We didn’t want to stay too long, because we wanted the kids to have naps because we were planning on going back to Magic Kingdom tonight to watch the light parade and fireworks.
After the kids nap, we headed back to Magic Kingdom. We started in Fantasy Land and rode all of the kids’ favorites. We then worked our way to Tomorrow Land. We missed it for some reason last year and heard from friends that there is a great Buzz Lightyear ride there. We ended up riding it three times in a row! It was too much fun. After that we rode the fun rocket ship ride. Again, we were treated like royalty on every ride. We grabbed a quick dinner so that we could make it to the light parade. Unfortunately, we were late to the handicap viewing area and all the good spots were taken. John and I took turns holding Charlie up so he could see. Finally, some nice people let me sneak in front of their mom’s wheel chair so I could sit on the ground and watch the parade with Charlie. Charlie was so excited because Snow White came over and held his hand and Cinderella smiled and blew him kisses again. He loves pretty girls!!! After the parade, it was a zoo trying to get out of the park. The kids were so tired and ready to go home. We saw some of the fireworks on the way out, but the kids were too tired to care. It was a long, wonderful day.
Wednesday, March 19, 2008Today we decided to stay home and swim. Everyone slept in. We played games, swam and took naps. It was a lazy day, but we still had fun.

Tuesday, March 18, 2008

Today we headed to Magic Kingdom. It truly is a magical place. Everyone who works there must take sensitivity training, because they know how to treat special kids like Charlie. It’s a wonderful place and they all make it so easy and special for families like ours. I thought it might be a different experience from last year’s wish trip, but it wasn’t. The characters and employees of Disney still went overboard to make our visit to Magic Kingdom special. We arrived at the park just in time to get a great spot for the parade. Charlie got so excited that the princesses waved and blew kisses at him. After the parade, we went to Fantasy Land because the kids wanted to ride all the rides that we could. Charlie’s favorite was the Adventures of Winnie the Pooh where you bounce along like Tigger does. After riding Dumbo, the Peter Pan ride and Snow White Scary Adventures, we went to get some character signatures. We saw Donald Duck, Pluto, Minnie Mouse and Goofy first then we went to see the Princesses. Charlie was too cute and was actually blushing when Cinderella was talking to him. Her kiss about put him over the edge! We then rode some more rides. We spent about 5 hours at the park today and were all beat and ready for dinner and bed.

Monday, March 17, 2008

Today we all slept in. It was nice to get caught up on some sleep and not have pressure to hit the road. We decided to have a mellow day and we went to visit Give Kids the World. This was the resort we stayed at last year for Charlie’s Make A Wish trip. It was fun seeing it again. We found the paver we bought last year. It says “The Sykora Family March 2007” Unfortunately; a transformer blew that brought power to GKTW so the Merry Go Round and wishing well didn’t work. Those were two of the things Charlie and Lily wanted to do. We did eat lunch and have ice cream at the ice cream shoppe. We were also able to drive the toy boats and ride the train. While it was fun to visit, I don’t think you can ever replicate the feelings that you have when staying there for a Wish. We came home and went swimming and cooked dinner.

Sunday, March 16, 2008

We made it!!! After two and a half days of driving, we are finally settled in the house in Kissimmee.
Friday March 14, 2008Today we left to head to Florida for Spring Break. We rented a house in Kissimmee and plan to go to Disney World! Everyone is very excited. We are in Clarksville TN tonight after a good day of driving. Everyone was so good – even Emma. I was worried about travelling with her, but she’s been easy so far. Charlie and Lily are seasoned travelers and did great as well.

Sunday, February 17, 2008

Has it really been so long since I’ve updated. We had quite a few mellow weeks of hanging close to home and not really doing much because it’s been so cold and Charlie’s been a little ‘off’, but we’ve had a fun last week. Emma, Nurse Lori and I took Charlie to his class Valentine’s day party – all of his friends were so excited to see him. It was so much fun seeing Charlie have fun again at school. Then Emma and I went to Lily’s school for her Valentine’s Day party. I’ll be sure to post photos when I can. Yesterday, we took the kids bowling with Grandma and their cousin Taylor. We had a lot of fun. Charlie and Lily got cool bowling shirts from good friends for Christmas. It was so cute seeing them wear them at the alley.

Today, we are hunkered down again – getting lots of snow. It’s pretty out there but we’ll stay warm and stay inside. I do need to share a few great Daddy and Lily outings. Last weekend, John was “father of the year” when he took Lily to Chicago with 5 other mom’s and their daughters to go to the American Girl Doll place for the show and luncheon. They had a great time and it was so wonderful that John went in my place (it was too much with Baby Emma to try to go). Then on this Friday night, Lily and Daddy went to a Father Daughter Dance with a few of Lily’s Friends. On a bad note, it’s been an awful winter for so many of our SMA friends. Influenza and RSV is every where. Our good friend MJ is still in the hospital after 21 days. Please pray for her and for all our other SMA friends that we can get through this winter safely.

Sunday, February 17, 2008 1:00 PM CST

Has it really been so long since I’ve updated. We had quite a few mellow weeks of hanging close to home and not really doing much because it’s been so cold and Charlie’s been a little ‘off’, but we’ve had a fun last week.

Emma, Nurse Lori and I took Charlie to his class Valentine’s day party – all of his friends were so excited to see him. It was so much fun seeing Charlie have fun again at school. Then Emma and I went to Lily’s school for her Valentine’s Day party. I’ll be sure to post photos when I can.

Yesterday, we took the kids bowling with Grandma and their cousin Taylor. We had a lot of fun. Charlie and Lily got cool bowling shirts from good friends for Christmas. It was so cute seeing them wear them at the alley.

Today, we are hunkered down again – getting lots of snow. It’s pretty out there but we’ll stay warm and stay inside.

I do need to share a few great Daddy and Lily outings. Last weekend, John was “father of the year” when he took Lily to Chicago with 5 other mom’s and their daughters to go to the American Girl Doll place for the show and luncheon. They had a great time and it was so wonderful that John went in my place (it was too much with Baby Emma to try to go). Then on this Friday night, Lily and Daddy went to a Father Daughter Dance with a few of Lily’s Friends.

On a bad note, it’s been an awful winter for so many of our SMA friends. Influenza and RSV is every where. Our good friend MJ is still in the hospital after 21 days. Please pray for her and for all our other SMA friends that we can get through this winter safely.

Saturday, January 26, 2008 4:52 PM CST

Wow! Do I have a lot to catch up on. For those of you who didn’t know, we were expecting a new Sykora. We went into the hospital on January 3 to be induced. Emma Rose Sykora was born at 3:15 p.m.. She was 7 pounds 5 ounces and 19 inches long. The kids were so excited to meet her. They came to the hospital that evening to meet their new little sister. Here is a link to a ton of photos of Emma’s first few days.

http://share.shutterfly.com/action/welcome?sid=8AcsmbFo1ZNWZm

Emma and I came home on Saturday January 5 and it was so great to be home with all of the family. It’s been a whirlwind few weeks of little sleep, lots of diapers, a lot of time being a human pacifier, but it’s also been loads of fun. Lily and Charlie are such great big siblings. They both enjoy holding her and playing with her. It’s so fun to see.

Emma’s first big outing was to visit Lily’s class at school. Wouldn’t you know that when we planned it all out – it ended up being a rainy day! Pouring actually. But we went ahead with our plans and Lily loved showing Emma off to her teacher and friends. That weekend, we took the whole crew including Charlie and Emma to Lily’s basketball game. Emma was barely over a week old but she enjoyed watching her big sister as much as Charlie did (ok, not really, but as long as she was held what did she care).

Charlie is doing well. He had another playdate with his friend Mackenzie – this time at her house. We loaded up Emma and Charlie and headed over there on Friday. Charlie loves playing with Mackenzie and told me we could just leave him at her house.

Today, Emma and I went with Lily to her basketball game, but Charlie stayed home with John. Chars was a little gunkier than normal this morning, and we don’t want to wear him out. Lily has had a horrible cough and runny nose for more than a week now, so we are hoping Charlie doesn’t get that cough.

We have too many SMA friends who are really sick with RSV this year! It’s been a horrible year already. Sophia and MJ, two of our closest SMA friends are both really sick. So say some extra prayers for them. There are too many other SMA friends who are sick to even mention. I pray that we can keep RSV out of this house. It would be horrible for either Emma or Charlie!

Hopefully, I’ll get better at updating - at least photos of the kids with their new little sister. She’s already growing to fast !!!

Sunday, December 30, 2007 1:24 PM CST

What a Christmas celebration month we’ve had. The kids had so much fun with their cousins all last weekend but Charlie and Lily were so sad when they left on Monday morning. Good thing that Grandma and Grandpa stayed until Thursday morning. The kids were so used to 24 hour play mates and attention. We had a wonderful Christmas Eve. I love going to church on Christmas Eve. We went to the children’s service and sang all the old Christmas songs and then everyone lit a candle and we turned down the lights and sang Silent Night. It always gives me chills.

We came home, had a nice dinner and then opened one gift from Mommy (matching PJs – I know, I’m a dork). Then it was off to bed to dream about Santa coming. Charlie woke up first and was so excited to see if Santa came. Lily soon joined us in Charlie’s room so we hurried up to finish Charlie’s treatments and rushed downstairs to open presents. The kids had so much fun. It’s fun watching them being so excited. We made rolls and put a candle in to sing Happy Birthday to Jesus.

We’ve had a lot of snow in the past few weeks (more than normal). The kids have been having so much fun playing outside with Daddy, sledding and trying to make snowmen. They actually just got back in from playing in the yard again. We have a little hill that Charlie and Lily ride down and they think it’s good fun.

We did get out to see a movie with grandma and grandpa. The kids wanted to see Alvin and the Chipmunks. It was cute. We’ll take them bowling during break as well as to see the movie about the water horse (not sure of the name). But I realize we don’t have much time left to get everything done.

That’s our update for now. I’ve posted some new photos under Charlie’s 4 year link on www.our-sma-angels.com/charlie. I’ll try to get more up soon too.

Sunday, December 23, 2007 3:07 PM CST

Sunday December 23, 2007

We’ve had a busy couple weeks. I’ve been sick as a dog, but even after the sinus/cold was over, I’ve had this horrible chest deep cough that hurts. Finally was made to go to a pulmonologist who diagnosed me as having Cough Variant Asthma. Crazy! But I’m on steroids, an inhalant and a nasal spray. The doctor thinks I’ll be better by CHRISTmas but we’ll see. He also said it could take weeks. At least we have a treatment plan. It is wearing me out all this coughing. And John is so tired of listening to it too :0)

Charlie got to go to his school’s Christmas party last week. He had so much fun seeing all of his friends. He loves going and we hate keeping him out during cold/flu season, but it’s just not worth the risks. He also had a fun play date last week with his friend Mackenzie. He is so very lucky to have such nice friends who will come over and play.

Lily had a fun time at her Christmas music program as well as at her school party. I’m still in disbelief that it’s almost Christmas.

We had a bit of snow earlier this month and the kids got all bundled up to go outside to be pulled around in the sled by John. They had so much fun. It always cracks me up that takes an hour (ok, not quite) to get the kids bundled up and then they last about 15 minutes outside. Lily did go back out to play with the neighbor kids, but it’s still a lot of effort for a short time outside.

John’s parents and his sister and her family (Mona, Rick, Anna and Sarah) came for the holidays on Friday night. The kids have been having such a blast. We had another bout of our wild weather. It was 50s on Friday and we woke to cold, freezing rain, turning to sleet and then to snow all day on Saturday. It’s been such a weird year of weather. It’s really pretty outside. We might get the kids out today, but we are celebrating Christmas tonight (family presents) before Mona, Rick and the kids head home tomorrow morning. Today we have some friends and their three kids here too. It’s fun watching them play with Charlie too. He’s having a blast with Anna as well. He had his first sleep over in his room. Anna slept on the floor with Charlie in his bed. It made his year! He is going to be so sad when they leave tomorrow. It’s been 24 hour entertainment for him.

I’ll hopefully post some photos soon. We’ve done a lot like decorating cookies, gingerbread house and lots of fun holiday stuff. I’ll also have a ton of photos from present time (once again it will be the never ending gift opening between tonight, Christmas eve, Christmas morning and then celebrating with my mom later too).

Please keep our SMA friends in your prayers. For some, this is the first Christmas since losing their child, for others, they have kids in the hospital fighting RSV as well as lots of colds and sicknesses at their homes. What a bad time of year.

Merry Christmas everyone and Happy New Year! I’ll update photos and more hopefully soon.

Tuesday, December 4, 2007 8:24 PM CST

Whew! I just noticed once again how far behind I am on updates. We had a great Thanksgiving at Grandma’s house with my brothers and families. The kids have so much fun playing with their cousins. It’s hard to believe we are now on the countdown to Christmas!

I’ve been really sick for more than a week and it is driving both Charlie and me crazy. He hates that I can’t be playing with him and I HATE not being able to play with him. Every time I think I’m getting better I’m wrong. We just have our fingers crossed that Charlie doesn’t get this.

Last night, Lily got to go to the Hannah Montana concert. She hasn’t really told us much about it other than she had fun. She is way over tired today so we are all paying the price of her being out so late.

Tonight, we had a surprise visitor – SANTA CLAUSE! The kids were so surprised and had fun sitting on his lap telling him what they wanted for Christmas. Charlie was telling him that he thought Santa was bringing him a present – and of course, he did – a small stuffed bear that said Firstat on his t-shirt (the nursing agency we use and the people who sent Santa to visit.)

That’s it for our short update. I’ll try to be better. Hope everyone had a great Thanksgiving with their families or friends. We know we are truly blessed.

Saturday, November 17, 2007 11:13 AM CST

An overdue update here as usual. Charlie and Lily are both doing great. Charlie recovered so quickly from his last surgery. He wanted to stop all pain meds quickly, including plain old Tylenol. He is such a trooper. Last week, we took off the final surgical tape from his back and his incisions look wonderful. I feel much better now about the future surgeries knowing what to expect now.

The week we got back Charlie had two friends over from school. They dropped by to give him two posters that his class made. He loved having a visit from Mackenzie and Ben. He can’t stop talking about it. We also were able to start PT right away and the first time we went, he was flirting with everyone – I mean everyone. Any woman he passed in the hall, on the elevator – everyone. Telling me that he wanted to have a playdate with the pretty girl. The middle aged women were flattered beyond belief!

These last two weeks have flown by. Lily is doing GREAT in school and really starting to master her weekly spelling tests. John and I can’t believe some of the words that these first graders are getting. They have three bonus words a week and Lily got all three right – thankful, adventure and favorite.

Charlie was supposed to go over to Mackenzie’s house yesterday for a playdate. I got the time wrong on our first homebound PT sessions, so we had to call Mackenzie’s mom to see if we could push it back. Then I got Charlie all dressed, in the van and ready to go. I was backing out of the drive way and the van felt sluggish. I couldn’t tell if it was the cold or what. Then it hit me! Another flat tire! Sure enough the driver side rear tire was flat as a pancake. I had to come inside and call Mackenzie and her mom and cancel. They were gracious enough to offer to have the playdate over here! I’m so glad it worked out or Charlie would have been devastated. He’d been talking about this playdate all week! John had to deal with getting the tire fixed. The company who put the lift in the back for the power chair totally blocked the access to the tire changing equipment. GMC needs a special tool to drop the spare tire as well as a different wrench for the tire. The first truck that came out from AAA couldn’t do anything with the tools they had, so we had to have the van towed to the tire place. What a hassle. I think I need to order a new GMC tool kit in case we have a flat in the middle of nowhere! Anyway, we were able to get everything taken care of in time to get Lily from school and be able to go out to family dinner last night.

That’s about it – nothing exciting, just chugging along. Can’t believe Thanksgiving is in a few days! Where is 2007 flying to????

Thursday, November 1, 2007 7:46 PM CDT

WE ARE HOME!!! Yippee! We were discharged from the hospital yesterday after a lot of waiting around at 3:30 p.m. We knew we didn’t want to go too far with such a late start, so we decided to go a little out of our way to visit my 96 year old grandma and several aunts and an uncle in Waterloo, IA. But first, I’ll take a step back to the yesterday earlier.

We thought we’d be out of the hospital early yesterday. The resident on the floor came in at 5:45 a.m. and said that the plans were in the work to get Charlie released soon. So John and I were so hopeful that we’d be out of there by noon. Well, needless to say nothing goes as planned. Charlie had some pain management issues and they weren’t comfortable releasing him until we knew that his pain could be managed with g-tube medication. Since he had an IV med at about 11 a.m. – we had to hurry up and wait for many, many hours for his pain to start again so that we could see if Oxycondone (spelled wrong I’m sure) would work to cut the pain out. We had success so they started working on getting us out of there. Even though it was a long painful wait for John and me, Charlie had a blast. We brought a big bag of candy with us so that Charlie could share with all the doctors, nurses, RTs ect. Well, he really wanted everyone to come in and trick or treat. So, we asked several of his nurses to come in and say T&T to Charlie. He would say, “What do you say? You need to say Trick or Treat.” And then after they said T or T, Charlie would say “Have some candy” and he’d give them a big smile. Then he’d tell them to find more “customers” to trick or treat. He was charming everyone yet again. Everyone who came in was sure to pass the word to everyone they knew to go see Charlie. I bet we had more than 70 people from the cleaning crew to the Nursing Staff to the Pharmacy staff come in. He had to have everyone say the right thing and then show him the candy they picked. Every time pretty nurses or nursing students would come in, he would say – I want them to come have a playdate. He was making all the pretty girls giggle – he is such lady killer.

When we finally got discharged, Charlie was pouting because he was having so much fun with all his customers Trick or Treating that he didn’t want to leave. We loaded up and hit the road.

We got to Waterloo last night about 6:30. We called my aunt and uncle and they met up with us for dinner – well, we ate and they sat and chatted with us. Charlie has so much fun being on the table and the center of attention. But you can tell that about 45 minutes before we can give him more meds that his back starts to hurt. He gets really grumpy and you can tell his back is bothering him. Hopefully by tomorrow he’ll be much better. We took Charlie back to the hotel and got him in bed and then I went over to my Grandmother’s house to visit with her and my Aunt Diane. I stayed until about 10:30 because I didn’t want to leave, but I was wiped out. Charlie had an okay night, but was really burpy and definitely needed his meds on a regular basis. AT one point he wanted Daddy to join us, so all three of us shared the bed for the last half of the night. We didn’t get moving until 10:30 so we were late getting home tonight. It was so wonderful seeing Lily and my mom. Lily had a great time with her cousins going trick or treating and didn’t seem upset that Daddy couldn’t make it home. She had a great week with Grandma.

All and all it was a successful first lengthening. He grew between ¾ and 1 inch. It’s nice to know what to expect now. I think if we can arrange surgery to be first on the schedule, we could shorten our stay considerably. But all in all, being in the hospital for only 50 hours seems great to us. If only it wasn’t a 500+ trip to get there and home.

Hope everyone had a Happy Halloween. John and I pretty much forgot our anniversary on October 30 (we did have cards for each other) but it’s hard to be in any mood to celebrate at the hospital. We’ll have to make it up to each other soon. But I can say having Charlie’s surgery such a success is the BEST anniversary present we could have had.

Thanks again for everyone’s prayers and support. It’s good to be home!

Wednesday, October 31, 2007 2:06 PM CDT

It's 2:10 and we are still here in the hospital. We are waiting to see how Charlie's pain is with the oral meds (he needed IV meds earlier and they don't want to send him home until pain is manageablle orally). So, it looks like we'll only make it half way home tonight. Charlie's been having a blast - he keeps asking everyone to send in more "customers" to trick or treat in his room. He's loving it.

hopefully we'll be on our way soon and I can update from the next hotel.

Thanks again for the prayers!

Tuesday, October 30, 2007 9:22 PM CDT

Hi All -- So sorry. I was just getting ready to update :0) it's been a long afternoon. Charlie did GREAT. We didn't get taken up to see him until almost 4 -- apparently there was a mix up with the Child Life person so she was late getting us. By the time we got into recovery, I'm sure Charlie was really nervous that we weren't there. They were able to extubate him to bipap so all is good. His back is hurting some, but with Tylenol/codeine he is doing well. I rode back with him on his bed to the Floor (no PICU, yeah!). That made him happy. He started feeds right away and is doing well. He also has peed several times and is making good noises in there. So HOPEFULLY, we'll be discharged early tomorrow !!! Yippee! The sad news though is that Lily is so upset. Daddy was suppose to fly home tomorrow to T&T with her and then fly back Thursday to get us. Now that we might be getting out tomorrow, he isn't going. And Lily is devastated... Once again, it's breaking my heart....

Oh -- and about 1/2 hour after we got to the room he asked to be off Pappy and did wonderful all evening. He is now sleeping soundly on his Pappy so all is well. I feel very confident we'll be heading home tomorrow -- just hope it's not on the late side -- you know how getting checked out can be....

Thank you for all the prayers. Charlie's been doing so well and has charmed everyone. We have a big bag of Candy here and he asks everyone to say trick or treat so he can give them candy. It's too fun...

I guess it's a good thing we went T&Ting early with Charlie because he'll be missing it in the hospital tomorrow night unless something bad happens tonight...

Talk to you all soon!!

HUGS and sorry for the late update.

Tuesday, October 30, 2007 2:06 PM CDT

Charlie is now in surgery. I left him at 1:15 p.m. in the OR after waiting for him to be put under. We were told that surgery started at 1:45 p.m. We are VERY hopeful that this will be a quick and easy procedure. Dr. Schroth was hopeful that we might even be released tomorrow if his belly starts working for us quickly! Prayers appreciated!

Monday, October 29, 2007 10:39 PM CDT

Whew, what a few days we’ve had. A few days ago, I was cleaning Lily’s ear and went a little too far in. She started crying and I felt horrible. On Saturday while getting her ready for her last soccer game, I noticed dried blood in the inside of her ear. I thought that after her soccer game and party I’d take her to a quick care clinic to take a look. Well, at the game I was talking to a pediatrician mom of one of Lily’s friends and she said not to worry about it. That I couldn’t have gone far enough in to hurt her ear. So, I didn’t take her in since she hadn’t been complaining. Well, Saturday night she woke me up crying a little about her ear hurting. So . . . I had Grandma take her to a quick care place on Sunday since John and I had to leave with Charlie to head to Madison. I feel so badly that I wasn’t there. Apparently, Lily had a UFO – unidentified foreign object deep in her ear and a MAJOR ear infection. They had to flush it all out and what came out appeared to be a paper object like a waded up piece of paper or something. The doctor said it was very deep in there and had been there a long time. Talk about making a mom feel guilty. Lily just never complained about it. So she is on ear drops and an antibiotic for the next 10 days. She is in some pain now from the ear flush etc, so she is awfully sad and crying easily. It makes it so hard to be away . . . .

So, here we are in Madison….We made it into Madison yesterday evening and had a nice evening at the hotel. John took Charlie swimming which we all know he loves and then we ate and went to bed. This morning we ate breakfast at the hotel, John took Charlie swimming and then we came to the hospital to get checked in. What a long process that has been. We had a little confusion trying to figure out where we were suppose to go, but once we got to the 5th Floor, they knew exactly where we were suppose to be. We had a steady stream of doctors in for visits as well as many “pretty girls” as Charlie liked to call them (the nurses, RTs etc). He charmed everyone as usual. Then came the horrible part of the day. It took 2 attempts from the nurse here on the floor who was suppose to be the best to get his IV started. She tried the left arm and then the left foot. Charlie was crying and sweating and asking John and I when it was going to be over. It was horrible. They would get the line in but then the vein would blow. They then called in the SOS team – specialists in getting the lines started. She had to try three times. Twice in the hand where one time blew a vein and then on the third try on the other hand – success! Charlie is such the trooper but he was in such pain. I would do anything to be the one having to be poked and prodded! He is truly our hero!

He didn’t get a nap today between all the doctors’ and just getting things set up. We went at 6:00 to the playroom and he got to decorate a trick or treating bag and then we all went downstairs for a quick dinner. You could tell he was feeling tired and out of sorts. So we brought him up to get ready for bed. The weirdest thing happened. The nurse was taking his vitals and listening to his lungs and Charlie started to get really upset and said he couldn’t breath. He said to listen to him and started taking deep breaths, but he sounded fine. We couldn’t understand why he was getting upset and saying he couldn’t breath. We didn’t have him hooked up to a pulse ox yet because it was still on order. So the nurse went out to get a hand held one and when we put it on he was only 92-93hich is low for him. So we quickly coughed and suctioned him and he has been fine every since. He wasn’t in danger, but it’s amazing how he didn’t feel right and knew that he wasn’t breathing well. Nothing really got suctioned up so I’m not sure what happened. I think he just had a long day with no bipap break and it caught up with him.

It’s 9:30 now and he’s finally asleep. I hope he has a good night sleep. It hasn’t been an easy day. Although he did have fun flirting with everyone.

Surgery is scheduled for tomorrow at noon. Which is a bummer. We had hoped to be first on the schedule. Dr. Schroth was by for a visit and thought we could be out of here as early as Wednesday! It all depends on when his bowels and GI system starts to work. Which we all know with Charlie is always up in the air. So BIG prayers would be appreciated. We’d love to get out of here on Wednesday or Thursday at the latest!

I’ll update his websites after surgery when I can. I’ll also try to email most of you if I remember. It’s hard to keep up sometimes! Thanks again to everyone for ALL your support and prayers.

Wednesday, October 24, 2007 6:15 PM CDT

Here is a link to our October photos. They include Charlie's playdate with Mackenzie - his friend from school, Charlie and Lily trick or treating (a week and a half early), Mystery the Praying Mantis we had for 5 days, Mikey's Bday party (another school friend of Charlie) and our visit with Tommy! Enjoy!

share.shutterfly.com/action/welcome?sid=8AcsmbFo1ZNWWp

You may have to copy and paste the above link to your browser.

Hugs! Kim

Sunday, October 21, 2007 9:15 PM CDT

Just a quick update since I’ve already updated today. Tonight Charlie and Lily went Trick or Treating since Charlie will be in the hospital on Halloween. We knew the weather was going to change and be really cold so we wanted to do it this weekend instead of next weekend. We had six neighbors who made it a great evening for the kids – complete with decorations and dressing up. The kids had a blast. We also know that they have huge Halloween parties all week at the hospital so Charlie will get to dress up again there. Lily will be here to celebrate with her friends.

Sunday, October 21, 2007 11:45 AM CDT

Good news! Charlie is finally over his cold. He ended his antibiotic on Wednesday so hopefully, his tummy will be back to normal soon too. The poor kid must be bored stiff. We haven’t left the house much since the race on October 6. The two small outings we did went okay though. We took him to an or thotics appointment last Friday because it took us months to get in. They were casting him for new DAFOs – the little splints that he wears on his feet to keep them in line. Anyway, it went okay, but he did have problems when we first got there. He wasn’t doing well sitting up at all and we needed to suction him a lot. Which we never have to do. He was fine once we had him on the mat for the casting. We stayed in all weekend after that. But on Monday, his school friend Mikey was having his birthday party at Chuck E Cheese’s. Charlie really wanted to go, so we took him. He had a great time, but wanted Daddy to hold him the whole time. He wasn’t doing very well sitting up in Blue. It was probably a little too early to have him out. But we all had a fun time and he did okay.

The kids had a great time over the last few days “booing several families in our neighborhood. If you aren’t aware of what booing is – it’s putting a bag of candy or treats along with a note about what Booing is, ringing the doorbell and running and hiding to watch them open the door. The kids loved it.

Friday we went to Charlie’s IEP meeting at school and then had a play date with Mackenzie at Deanna Rose. It was a lot of fun. Charlie did really well and was up in his chair for almost two hours. He is definitely getting better and almost 100%. Lily had a birthday slumber party that night with her friend Julia, so John, Charlie and I went to our normal Mac Grill for dinner. All and all Charlie had a fun day. He did seem a little off when we got home so I think we may have overdone it a little.

That’s it for now. It’s hard to believe that we leave a week from today for Madison for Charlie’s first growing rod lengthening surgery. We’ll be asking for your prayers soon.

Wednesday, October 10, 2007 1:22 PM CDT

Charlie is doing better. He was able to come down stairs yesterday for part of the day and most of the evening. You can tell he isn’t feeling great though because he is taking good, long naps. We are continuing with his treatments every 4-5 hours and he’s doing well. We will keep him out of school again tomorrow, but he will most likely have a playdate with his favorite friend from school – Mackenzie. He’s been looking forward to this for weeks. Mackenzie is a sweet girl who always plays with Charlie at school.

There are so many sick SMA friends already. It feels like the cold/flu season is coming on too fast this year. Our dear friend MJ (she’s 19 and has SMA) is in the hospital for a perforated intestine, so please say prayers for her. Lily had a school friend in the hospital last week for strep pneumonia! She had to have a chest tube, O2 and everything! So hopefully, the winter won’t be as bad as this fall is already.

We are just hoping we can get Chars healthy and keep him healthy so we can go up to Madison for his lengthening surgery on October 30.

Prayers for John Eason’s family (he is a 2 year old boy from church who died last night after a long battle with congenital heart disease as well as other issues.

October 8, 2007

Charlie woke up asking for treatments this morning again. He is definitely sick, but doing okay. We kept him in his room most of the day and just stayed on top of treatments. Lily was a big girl and took care of herself in our bedroom for the day. We were told that after 24 hours on the antibiotic that she shouldn’t be contagious. Lily was definitely feeling better by tonight – she was dancing and bouncing off the walls. She’s looking forward to going back to school tomorrow.

October 7, 2007
Charlie woke up this morning at 6 a.m. with his pulse ox alarming. His heart rate was over 170 and obviously wasn’t feeling very well. John and I did his full treatments (cough/suction, nebs, CPT, drainage, more cough/suction) until we got his HR down. It took a long time, but he finally started feeling okay. It’s been a long time since he’s been this sick. His O2 dropped to the lowest that we’ve seen in a year! He is obviously coming down with something. We started doing his treatments every 4 hours and are just staying on top of this.

We took poor Lily into a quick care to day as well. She’s had a bad cough for more than two weeks and it ended up that she has Strep. We started both Charlie and Lily on antibiotics. Luckily, Lily didn’t have school tomorrow so she won’t have to miss a day.

October 6, 2007

Today was the Roefest Cure SMA Walk and Roll. Charlie and Lily had been looking forward to it for weeks. John’s cousin David and his family (Alli and Tommy) came in on Friday night to join us for the race. Charlie wasn’t feeling himself when we left but he still wanted to go. We had just turned off the highway to get to the location of the race, when I had to flash John down (he was in another car) pull over, and pull a lot of food and air out of Charlie’s tummy. He was having a bad burping spell. I’m just glad it happened after we were off the highway. He still wanted to try to do the walk, so we went ahead. You could tell he didn’t feel like himself. He made it about 5 minutes into the walk and then he wanted out of Blue and wanted John to carry him. Luckily, we were able to take a short cut back so that John didn’t have to carry him the whole mile. When we got back to the Roefest starting line, we laid him on the grass and suction him and got a lot out. He felt better and wanted to stay. Mostly he wanted to have someone hold him, but he did dance and race around a little with his cousins and sister. He decided that he didn’t want to stay for the Kids Dash so we left early and headed home. He did okay the rest of the day as long as he stayed laying down. He had so much fun playing with Tommy and Lily.

A big THANK You to all of our family and friends for their support of Charlie and his other SMA friends. We had another successful year raising money to find a cure for SMA.

October 1, 2007

John Charlie and I took advantage of the cooler temps and went to Charlie’s favorite place – Deanna Rose Farmstead. He had so much fun zipping around in Blue. He didn’t even care to stop and feed any animals this time. It was nice to have a break in the heat and humidity.

We had a fun addition to Blue last week. They were able to put a switch on his chair that he would work that allows him to put the power chair higher and lower as well as tilt it back. He was sitting there playing with it back and forth and saying “wheee whee”. It was too funny.

We had a fun weekend as well. Our Saturday was really busy. We all went to Lily’s soccer game in the morning and were even able to bring Blue. Charlie drove all over the place before and after the game. During the game he was too busy flirting with a few of Lily’s teammates as well as cheering his sister on when she was on the field. After that, Charlie and John went to a preschool friend, Kevin’s, birthday party at Gymboree. Charlie drove Blue some, but most of the party was spent in Daddy’s arms running and jumping and playing. John was pooped by the time he got home. Then late that afternoon, we had my aunt, uncle, cousin and his family as well as my brothers and families. Charlie and Lily had so much fun with all 7 cousins (and second cousins) running, driving and playing. Charlie woke up first thing Sunday morning and asked if everyone was still here. He was so sad when he learned that it was just us :0)

Today Charlie and I just had a short outing to Target. He loves driving around in there.

Wednesday, September 26, 2007 12:29 AM CDT

Well, to update from my last journal – Charlie’s fever only lasted one day and he didn’t have any other side effects. He went to school on Thursday and as usual, was so excited to play with his friend Mackenzie. He can’t stop talking about her and wanting to have a playdate. I need to call her mom and set something up. Friday, Lily came home from school with a fever. Hers lasted all weekend and has ended up being a bad cough. We are trying to get her well and keep Charlie away. John’s parents were in town this weekend so they were disappointed that Lily didn’t get to show off how well she’s playing soccer.

John’s parents were suppose to be here until Tuesday, but unfortunately John’s grandma died Saturday night so Barb and Bob left early Sunday morning. Lily and Charlie were so sad to see them go, but they promised to come back soon. John and I went to the Chiefs/Vikings game. The first game we’ve been to in years. It was fun, but a bummer for John since the Vikings lost.

John left yesterday noon to drive up to MN for his Grandma’s funeral. The kids and I miss him but he’ll be home tomorrow.

The big news right now is that we’ve scheduled Charlie’s first Growing Rod Lengthening. It will be October 30 (which is a bummer since Charlie will miss Halloween). They said it could be 5 days in the hospital. We are definitely hoping for a shorter stay. It’s hard to believe it’s been 6 months since his surgery already. And it’s hard to think about putting him through surgery again. Unfortunately, it’s something we’ll have to get used to as he will go in every 6-7 months for a long time to get the rods lengthened.

I hope you are all well. Thanks for checking up on us! We are all doing great. The Roe Fest Race and Roll is coming up a week from Saturday. If anyone is in town, come join us for the walk. You can check out www.firstgiving.com/charlies or www.roelandpark.net for information on how to sponsor us or how to walk with us.

Sunday, September 16, 2007 5:47 PM CDT

We’ve had another busy week here at the Sykora household. Lily started cheerleading and gymnastics on Mondays with her friend Julia and she loves it. Then she has piano on Tuesdays, soccer practice on Wednesday and a High School Musical class on Thursdays. We probably over booked her for a few weeks. John took Charlie back to school on Thursday for the first time in a since a week ago last Monday. He loved it. All he could talk about was seeing his friend Mackenzie and that he played with Mikey and Ben too. John left for a fun short trip to Vegas with some old friends on Friday so he was gone all weekend. Mom was around to help out and Abby stayed an extra night on Friday night so that I could be up early to take Lily to her soccer game at 8:15 without having to worry about Charlie. And boy, am I glad that Abby was here. Charlie slept in until 8:15 and I would have hated waking him up. It was too COLD to take him to the game. I was so chilled. It was low 50s and cloudy and spitting rain. It was cool here again today, but tomorrow and all next week they are saying mid to high 80s. Such crazy fall weather. Charlie went to a school friends (Cassie’s) bday party on Saturday. He had so much fun. It was a princess and pirates party. They did a lot of different craft projects and played fun games like pin the key on the treasure chest, a piñata and a treasure hunt for chocolate coins. Charlie didn’t want the party to end. He said I was a mean mommy for making him leave LOL. He was charmed by a couple older neighbor girls of Cassie who helped him at the party. He certainly loves those older women LOL.

Today, Charlie has a fever. It was 102 before his nap and his heart rate is elevated which is normal with a fever. He’s showing no other symptoms so hopefully, it won’t amount to much. He is such a trooper and not complaining about anything. He and Lily are so excited to have John home. They’ve been hollering at him all day. Abby and her parents stopped by for a quick visit so Abby’s dad could meet the kids. It was nice to meet her dad and see her mom again. They are such a neat family and have an incredible daughter whom we love.

Well I better sign off.

Saturday, September 8, 2007 11:08 AM CDT

Ok, I’m a week late updating about Charlie’s birthday party. We had 20 kids to the bowling alley for bowling, pizza, cake and a piñata. Charlie had a blast. He had his big cousin Taylor and our friend Lauren (who has SMA Type III) helping him bowl and he loved the attention. He was also so excited that so many of his school friends were there.
It was great to have the party at the bowling alley – no set up or clean up :0) Abby made Charlie the most wonderful Spongebob cake. I can’t tell you how many moms asked me where it came from. We certainly love Abby!

We went to the pool with the kids both Sunday and Monday before the neighborhood pool closed for the summer. Our kids are such water bugs. It was a nice three day weekend. On Sunday night, Lily picked the restaurant for her family birthday celebration with Grandma, Aunt Lisa, Uncle Robert, Taylor, Sidney and Bobby. She enjoyed having the waiters sing to her. So both my kids had a long birthday month of celebrating. Charlie is already asking for stuff for his birthday again (I don’t think he realizes how FAR away next year is…)

Unfortunately, Charlie got a cold. He is doing well and his stats are all great, but he is very stuffy and says he can’t swallow when he’s sitting up. So we’ve kept him home all week. He is really starting to bring stuff up now during cough sessions, so hopefully, it won’t turn into anything else.

Lily went to her school festival last night with a friend and I went to a dear friends baby shower. I’ve known her since 8th grade and she’s wanted to be a mom as long as I’ve known her. I’m so happy that her biggest desire finally came true. Little Gus was a month early so the shower turned into a baby viewing party. He is such a cute little peanut. Today and tomorrow Lily has two soccer games, the first of the season. Charlie and I will stay home while Daddy coaches Lily. We are sorry to miss the games….

Hopefully, this cold will be over quickly and we can get back into our routines. Hope everyone is well.

Friday, August 31, 2007 9:16 AM CDT

Today is Lily’s 6th Birthday! I can’t believe how big my little girl is getting. She already had her birthday party a few weeks ago, so tonight will just be our family and Grandma. Lily wants to go to Macaroni Grill for dinner so that’s the plan. She brought cupcakes and goodie bags to school today to share with her class. And John, Charlie and I are going up at 11 to eat lunch with her. She is very excited as is Charlie. It should be a fun day.

Then at 1, John, Charlie and I have to go to his IEP (Individual Education Plan) meeting for school. We still aren’t sure what we’d like to try to have Charlie do this year. We still have Nurse Lori going with him, but I go too. It’s too hard for just Lori to be there. I think he needs a 1:1 para, but I’m not sure how comfortable I am with leaving him at school. We’ll see what happens.

We’ve had a fun week since my last update. So here is an overview. On last Saturday, Grandma, Lily and I went to Build A Bear for Charlie’s birthday. Lily made a cute leopard and Charlie made a penguin. The kids love their new pets. We did have a scare. The lady working at Build a Bear accidentally set Charlie’s penguin down against his joystick. It caused Blue to drive backwards, running over Lily and trapping Grandma against the toy bins. It was a very confusing minute because I couldn’t figure out why the chair was going and it wouldn’t stop. I was telling my mom to stop pushing the attendant control but she wasn’t doing it. Luckily, no one was hurt too badly, but it was scary. And it reminded me that I have to be so aware of anyone doing anything close to Charlie’s chair. People just don’t realize Charlie’s joystick is there and that it is so sensitive.

Charlie and Lily had another good week at school too. Although, I have to tell you how great it was with Charlie yesterday at school. The weather had finally broken enough for Charlie to participate in the outside play time. He and another adorable girl, Mackenzie played tag the whole time. She would try to grab his foot while I was pushing him around and then Charlie would chase her. She totally understood that she couldn’t run too far or too fast so that Charlie and I could catch her. He is totally in love with her. They held hands walking back into the school and then during story time. He told her that she was his “best friend” and that he wanted her to come over to his house to play. He can’t stop talking about her. Then it was great because at center time, a bunch of kids were playing with the house on the floor with Charlie. He loved being able to be part of the group. It was the first day of school this year so far that I’ve felt it was worth all the effort to get him to school.

Well, I better run. I’ll update again soon. Charlie’s birthday party is tomorrow and we’ll celebrate big for Lily tonight. August is a crazy month for us ;0)

Friday, August 24, 2007 2:23 PM CDT

Charlie is on a roll for celebrating his birthday every day for as long as he can. Tuesday night, John, Lily, Charlie and I had a fun dinner that ended with Spongebob and Patrick cupcakes. Charlie loved blowing out his candle! All that work at PT is obviously paying off. Then with a little help from Lily, Charlie opened his big mound of presents from us as well as Auntie Mona and Uncle Rick and the girls. He was so excited that he had a hard time going to sleep.

Wednesday, Daddy woke him up with a Happy Birthday song! It’s so hard to believe my BIG boy is 4 years old. He is so grown up. Charlie and I drove Daddy to the airport that afternoon for his big backpacking trip at the Rocky Mountain National park. Then we came home to celebrate again with Grandma and Lily. Charlie received a bunch of packages in the mail so he had another go round of presents! Thanks everyone!

Thursday night, Grandma, Lily, Charlie and I went to Chuck E Cheese’s for Charlie’s birthday yet again. Charlie has been asking to go forever. Lily and he had so much fun. He was buzzing around in Blue playing all the games he could as well as making me play them so he could watch me. He was so mad when it was time to go. He was asking when we could come back! I was a little less excited about that idea since I found a spider in my salad! Yummy, extra protein!!!

Today is Friday and Charlie has more boxes to open from some of our SMA friends. We are waiting (not so patiently) for Lily to get home from school. He can’t wait and already is asking when it’s going to be his birthday again! And he’ll get his wish next weekend when we have his Bowling Birthday party! I’ll work on posting photos soon (I’m so lazy these days LOL)

Tuesday, August 21, 2007 5:16 PM CDT

We’ve had a busy last week. Lily started school last Thursday. She is really enjoying her new teacher. She was so excited about Friday. It was her 6th Birthday party (two weeks early). We had it early because it was the premier of High School Musical 2 so we thought a sleepover would be a great birthday party. Lily invited 10 friends over for pizza and movie watching. It was a crazy night. Only one girl sat and watched the movie. The rest of the girls ran around, playing chase, screaming, dancing and just being crazy. It was a LOUD evening, but a lot of fun. I slept on the couch downstairs with the girls and Abby stayed over too. The girls were asleep by 11:30 (because we made them) and up by 6:30. We were ready for 10 a.m. and the party being over. It was a lot of fun, but also very tiring and crazy! I think everyone had a good time.

John and I took Charlie to school on Monday for his first day of school. We let him take Blue and he loved having the mobility. But I think with the young kids in class (one girl wouldn’t stop trying to play with the joy stick and ran over her foot) as well as the crowded room, we won’t be able to swing having power during school. He loved being back with kids. Unfortunately all of his friends from last year, except one, are either in the PM class, moved to Kindergarten, or changed schools. I’m sure he’ll make new friends soon, but we were sad that many were gone. Nurse Lori and I took him today and brought cupcakes to celebrate his birthday since we won’t be there tomorrow for his real birthday. He had a lot of fun. We really need to work on a new manual chair since he’s outgrown his kidkart.

We are celebrating his birthday tonight with the family since John will be leaving tomorrow for 5 days to go hiking with his brothers-in-laws at the Rocky Mountain National Park. I’m sure Charlie won’t mind having cake and opening presents tonight. We’ll celebrate tomorrow too :0)

That’s our quick update. I’ll be sure to post a lot of photos soon on www.our-sma-angels.com/charlie.

Wednesday, August 15, 2007 10:41 PM CDT

I can’t believe so long has passed once again since an update. I feel like the summer is flying by. Lily starts school tomorrow! And Charlie will either start Monday or Tuesday. We went to school today to meet Lily’s new teacher and she seems really nice and wonderful. Lily is excited but nervous to start school again. I remember those butterflies :0) On Friday, we are having 10 little girls (11 if you count Lily) over to watch the High School Musical 2 premier for Lily’s Birthday party. Then they are spending the night, Should be exciting to say the least. Even though Charlie’s birthday is closer than Lily’s it worked out to have Lily celebrate with the HSM 2 premier. We are going to plan a bowling party for Charlie in the next few weeks once we know the kids who are in his class.

We’ve been busy, but trying to stay out of the heat. It’s been over 100 degrees for more than a week! Hopefully, we’ll get a break soon. Charlie doesn’t do as well in this hot weather and we haven’t been able to go out even in the evening to enjoy driving Blue. I’ve been taking him shopping with me to Target instead which he loves :0)

No other real news here, so I’ll keep this short. I’ll hopefully update to tell about Lily’s and then Charlie’s first days of school as well as their upcoming birthdays! Hugs!

Saturday, July 28, 2007 8:25 PM CDT

I noticed yet again it’s been too long since our last update. We just got back from Whitefish Lake in Jenkins, MN with John and all of his family. Unfortunately, we had to leave a day early because Lily had a fever on Thursday, Friday and still has one today. It’s low grade, but we were worried about getting all the other cousins sick. It was a fun week though. Lily and Charlie had so much fun with their cousins, grandparents and aunts and uncles. There were pony rides every day, an antique fire truck ride, fishing, boating, swimming, eating s’mores and lots and lots of game playing. The kids were wonderful at spending time playing board games and computer games with Charlie as well. It was a very hot week for the area with only a few days of breaks in the heat. We had a couple days of rain, but all and all it was a great time. I still think the best thing to watch are the bald eagles that live all around the lake!

I do have to recount a few fun things that happened before our trip up north. We took Charlie to church for the first time while in Blue. It was so fun to watch him sitting up so tall. He loved driving up for the kids’ story time as well as for communion. He really is such a big boy now. I’ve enjoyed taking him shopping with me in Blue. He is so well mannered and such a big help. He loves taking Blue everywhere we go these days. He is growing up too fast. It’s hard to believe that he’ll be 4 in less than a month and Lily will be 6 shortly after that! Time is flying too fast!

Lily and Charlie will both start school in mid-August. The summer is almost over – how did that happen.I’d better get this short update posted. Hope everyone is well.

Friday, July 6, 2007 9:37 PM CDT

We’ve had another fun week. Tuesday, Lily found a young box turtle in our driveway. She and Daddy brought it in to show Charlie. This little turtle wasn’t shy at all! All he wanted to do was to crawl out of the shallow box we had him in and crawl over Charlie. He didn’t even hide in his shell when Lily picked him up. We played with him for a short time and then took him out to the back yard to set him free. He practically ran away. He was a cute little guy.

Happy Belated Fourth of July! We started off the fourth with a parade around our neighborhood. We decorated Blue and Lily’s scooter the night before. The kids had such a great time rushing around the block with the other kids and families in our neighborhood. Back at the pool parking lot, there were bomb pops to enjoy. I think Lily got more all over her face than she did in her mouth. Charlie was bored when Mom or Dad tried to stop and talk. All he wanted to do is cruise around in Blue. It was so crowded with kids that there wasn’t much room in the parking lot, but Charlie sure found a way. After that, we came home and got ready to go to the pool. We decided to go to a different pool than our neighborhood pool because there is no shade to be found there. So we packed up and headed to another pool. Man! Was it crowded. They were having a big Fourth of July buffet and party at the pool. We couldn’t find a chair and had to set up camp on the grass, but at least it was shady. The kids have so much fun in the water. We stayed for a hour or so then headed home. We were having Grandma over for dinner and wanted Charlie to have a short nap. We had a great dinner of Burgers, pasta salad, tater tots, yellow watermelon, cantaloupe and then brownie sundaes for dessert. I was ready for bed after that meal! It was sprinkling on and off all afternoon, but cleared up nicely so that we could go out to the front street and set off some fireworks (which are illegal here we know). Charlie and Lily enjoyed our little show. Then it was back inside for popcorn and a movie before bed. We let Lily stay up later than Charlie to watch some of the big fireworks displays we could see from our deck out back. What a fun and crazy day!

Thursday Nurse Lori, Lily, Charlie and I went to the library to check out some books. We were trying to find the books on Lily’s summer reading list, but didn’t have much luck there. We still managed to bring home 7 books to enjoy though. Then I took Lily to get a quick haircut and we both had our toe nails painted! Later that evening after dinner, we drove Blue around the neighborhood and played with the bubble machine. It’s nice to go out later when it’s cooled off a little (not that it was cool, but much better than when the sun was high!)

Today, we just hung out and then went to the pool. On the way home we drove around looking at different places that we might find to move/build. One of our biggest struggles right now is trying to figure out if we can make this house assessable for Charlie or if it’s just better to build. It’s so hard because we love our neighbors and they would be hard to leave, but we also love our llot/landscaping/backyard. We have such great mature trees behind us which is hard to find in this farmland of Leawood we live in :0) Oh well, we’ll figure it all out. Oh, Lily had her FIRST tooth fall out tonight. She is so excited! I wonder what the going rate is for the tooth fairy these days! Oh well, I better run. I’m being chatty tonight.

Sunday, July 1, 2007 8:16 PM CDT

Ok – I never posted from before so this is going to be a long update with lots of dates in between. We are currently in a hotel in St. Louis on our way back home. The kids and I have been gone for 14 days and John for 10 days so we are all tired and ready to be home. But what fun we’ve had!

Luckily, the rest of our stay in Evanston was a lot better than the starting evening. We went to the Lincoln Park Zoo on Tuesday with a John’s good friend Dan and his son Charlie. It was a nice zoo and just the perfect size. We went to a crowded but great restaurant for lunch. Charlie had a great time lying on the table and not one person even gave us a double take. The wait staff was awesome as well. So our faith in human kind was restored. (You’ll see what I’m talking about at the end of this long update). After coming home for a rest, we went to some other old friends of John’s for dinner. Cathleen, John and their kids Claire, John Paul and Eleanor were such great hosts. Eleanor and Lily are the same age, so they took off and we hardly saw them. Claire and John Paul were great playing on the floor with Charlie. Charlie kept calling Claire his Best Friend. It was such a fun evening.

Wednesday we were pretty mellow. We had brunch at Le Peeps in Evanston without a single mishap or stare. Then we took the kids to Shedd aquarium. The kids enjoyed the dolphin show and all the sharks and fish. After that John and Charlie dropped Lily and I off at the American Girl Place for a whirlwind visit. Lily loved it. We found a nice Italian restaurant that we walked to that night. As our luck would have it, it was a basement restaurant and the elevator was broken. With the help of a bus boy, we were able to get Charlie and his chair downstairs to enjoy dinner.

We packed up on Thursday to head for Cincinnati to meet up at the SMA Family Time (10 families met up for a fun weekend). It was so great to see some old friends. We had fun hanging out together in the conference room, swimming in the pool, going to another acqaurium and having a fun dinner on the river walk. It was a quick weekend and now we are headed home.

I’ll try to post photos when I can.

June 25, 2007

Well, I’m way behind as usual. The kids had a great week at Vacation Bible Camp at church, but that was already more than a week ago. It was fun watching Lily being such a GREAT help and big sister to Charlie as they were in the same class. I had so many people comment on how good she is with Charlie. Charlie calls Lily is his BEST Friend.

On Tuesday, June 19 Grandpa Sykora got into town for a golf tournament that he and John were playing in. The kids were so excited to have Grandpa in town. They had their practice round on Wednesday so we didn’t see too much of them and then on Thursday, Grandma Ruisch, Abby, Lily, Charlie and I (Ok John actually did the loading) loaded up the van drove to Schaumburg, IL for a Families of SMA conference. We had the best weekend. The kids had so much fun swimming and playing with all the other kids who were there. I so enjoyed finally meeting so many families that I’ve been on talking to on the computer in person. It was also great getting to see so many families that we’ve met in the past. We spent a lot of time with the Postma family. Jillian is a few years older than Lily and they had a blast swimming and playing together. Isaac has SMA just like Charlie. The kids played a lot of games in the pool. Charlie has a crush on Jillian and keeps asking when we are going to see his friend again :0)

The conference started on Thurdsay night with a movie night for the kids. They ate ice cream and watched Finding Nemo. We got to see so many old friends as well as meet a few new ones. We had a Type I luncheon on Friday. It is a sponsored luncheon by two families who have lost a child to SMA Type I. We have been to this luncheon both times we’ve been before. It was great to catch up with more friends and to see Shaina (one of the mother’s who sponsors the luncheon) again. Then we swam with friends, took a little nap and got ready for the banquet/silent auction. The kids were wound up and having so much fun. They didn’t get to bed until after 10!!! Thankfully, they slept in a little on Saturday. Saturday was the last day of the conference. Abby and I went to the research update luncheon. Seems like a lot is going on. Charlie is in no-man’s land as far as drug trials. Too old for a Type I trial and not strong enough for the other trials. We talked to a doctor about potentially giving him some of the trial drugs “off trial”. John and I will have to think about what we would like to do. We swam again with Jillian and Isaac and then went and outside and did the pony rides. Charlie didn’t even want to try to ride like the other kids because he was having too much fun cruising around in Blue in the parking lot. Poor Abby was having to chase him down :0) Then the conference ended with the big Kids’ carnival. Charlie and Lily didn’t want to leave. They had so much fun playing all the games and winning all sorts of prizes. And man, the goodies were to die for. They had cotton candy, popcorn, ice cream and candy galore. We were all on a sugar high by the time we got into bed.

Sunday came too quickly. We participated in the Chicago chapter’s Walk (well, we only went half way because Lily was tired) and then said good bye to a lot of good friends. The fun news is that after spending only $5 on raffle tickets, I won the four one-day parkhopper passes to Disney Theme parks! And they are good until March 2009 so we might actually make it back by then.

We took Abby and Grandma to the airport and picked up John/Daddy. The kids were so excited to see him (me too of course). We had a nice dinner and then went to bed. We swam this morning, packed and moved to a hotel in Evanston. We’ll be here until Thursday when we head to Cincinnati to see some more SMA families for a short vacation.

Tonight, we had the WORST experience at a restaurant that I've ever had in the THREE YEARS of travel and eating around home. Several of the staff were in the kitchen laughing and pointing at Charlie lying on the table and calling over other people to gawk out the windows at us! THEN they had the gall to go talk to the manager. He came over in a really snotty tone and asked if there was a problem and if they could do anything to help!!!! He said that some of the customers had complained which was BS since there were only 4 maybe 5 other tables and NONE near us and we didn't notice ONE stare or glace from anyone EXCEPT their staff. I was so upset!!! And it was a "NICE" family restaurant -- a Wolfgang Puck!!! They were so freaking rude. Luckily Charlie was oblivious! Oh well. We are going to find an email and tell them how we feel. I'm tempted to write to the Evanston Newspaper - it was that awful!

Ok – Now you’ve “heard” all about our last few weeks. Once again, I’ll try to be better at updating. Hope all is well with everyone. HUGS!

Monday, June 11, 2007 9:14 PM CDT

Okay – I never completed the June 3 update. So I’ll just leave that at the bottom and start again. We’ve been having a fun spring/early summer so far. Charlie has been out driving Blue every day and loving it. Last Friday, we went to Lily’s day camp program at her school. Charlie took Blue and almost had a horrible accident. He drove off a very high curb! Luckily, John caught his head as it flew out of the head support and luckily, only the front right tire went off. The other Big lucky thing was that the whole chair didn’t tip over. Charlie was terrified as were we. It took him about 10 minutes to stop crying. John and I grabbed him out of Blue and took him to lay down in the van. We used this scary incident to reinforce that he needs to stop driving when John or I tell him to stop.

Today was the first day of Church Bible camp. Lily and Charlie are in the same class and had so much fun. We have camp all week.

I’ll try to do better at keeping up. Charlie is doing so well. Thanks for checking up on us.

June 3, 2007

We had a good week and a half. Last Tuesday, Nurse Lori, Lily, Charlie and I went to the Deanna Rose Farmstead (Petting Zoo and more!) with Brett and Kristal and Arturo and Liz. It was such a fun day. All Charlie wanted to do is drive Blue faster and faster. He had no interest in seeing any of the animals or doing any other activity. It was so fun watching him go everywhere. Lily, Brett and Charlie were chasing each other all over the place. We were only going to stay for an hour or so and ended up there for more than three hours! Charlie was up in Blue cruising the whole time.

We did have a funny mishap (or whatever you want to call it) on Friday. Charlie complained most of the afternoon about his “pee pee” hurting. You could feel his bladder was hard and full. So after giving him a long warm bath and then a baby fleet, we talked to his pediatrician. Since it was Friday afternoon, they thought it was best to bring him in to the office in case he needed to be cauterized. So we loaded up Charlie and headed to the Doctor’s. Of course, he peed on the way down there – but didn’t empty his bladder. Once in to see the Dr. he did empty it on his own. The Dr thought since we were there that we should try to collect a sample to test. Charlie did his thing and was so proud to pee in the bag (it’s a neat comptraption that went around his pee pee and was taped on. He loved telling Lily when he got home that he went tinkle in a bag. LOL It was very cute. Anyway, he tested negative for most infections, but they still sent off a sample. The doctor said it could be that this will be something we will have to deal with occasionally since the surgery moves a lot of stuff around. Hopefully, it was just a freak occurrence (it also happened briefly on Thursday but he went on his own quicker).

Saturday we tried to go bowling. We had Charlie in Blue and he only lasted three rounds before he decided that driving was more fun. We spent the rest of the game rotating running around with Charlie and finishing up our bowling game. It cracked me up. He just has so much fun driving Blue and has so much more stamina since the surgery. I think the surgery help take all the pressure off his diaphragm when in the power chair. We played outside for a long time as well with the neighbor’s twins who are also three years old. It was so much fun. We played again today and tonight after dinner.

Tuesday, May 22, 2007 9:19 PM CDT

It’s so hard to believe that we’ve been home a week now and it’s been two weeks since Charlie had surgery. He is doing amazing. Off all of the pain medication and just as happy as a clam. One more week and he can actually soak in the tub! The worst part about this whole thing is that he can’t swim for 6 weeks! He LOVES swimming and it’s summer, but we’ll survive. He is such a trooper. It still takes two of us to transfer him or carry him, so that puts a hamper on us during the work week, but Charlie doesn’t complain. We are just playing lots of computer games and reading books. Last weekend, we were able to get out and have some fun. On Saturday, we went to the Overland Park Fire Training center for their Day for Special Needs Kids. They had fire truck rides, fire demonstrations and lots of other fun things. Charlie was hilarious; the only thing he wanted to do is drive backwards since there was so much space. I think we need to get those bicyclist mirrors so that he can see behind him. Then on Sunday, we just played outside and went for a long walk. It was great today, because we had a day nurse so she was here to help get him up and outside too.

I also want to tell everyone how touched we have been by all the prayers, support and love throughout Charlie’s surgery; hospitalization and now that we are home. We’ve had so many friends offer to help with everything from helping with the pets, driving mom and Lily to the airport and bringing in meals that we can’t even explain how it’s touched our hearts. Charlie loved all the balloons, cards and presents he got in the hospital and still now at home. We are truly blessed with wonderful friends and family. I don’t know what we’d do without you all. And Mom – you know I don’t know what I’d do without you! Thank you all!!!!

It’s supposed to be spring, but we need to ask for prayers for so many of our SMA friends. We had two other SMA friends who went through growing rod surgeries the same week as Charlie (one lengthening and the other just like Charlie) – anyway, they are both struggling with fevers. Then there are others who are sick as well. Isn’t it supposed to be spring! So prayers for MJ, Erinne, Malorie, Jerika and Lizzy. Hugs to everyone!

Tuesday, May 15, 2007 10:56 PM CDT

We are HOME!!!! Charlie was discharged from the hospital yesterday and we made the whole drive home today. Charlie was such a trooper. It's a 500 mile trip. He was a typical kid when he asked "are we there yet". He kept saying he wanted to be HOME :0) And I agreed!!! It's so good to have a real long shower and to be in our own beds. I'll catch up later, but just wanted everyone to know we are home.

Sunday, May 13, 2007 5:05 PM CDT

Happy Mother’s Day to all the Mother’s reading this… Charlie is doing so well and we are even starting to feed him the way we do at home (bolus during the day and pump during the night). We are keeping him on Tylenol alternated with Oxycodin (spell) until we get home for pain because the car ride might be a little uncomfortable.

He had a nice day visiting with Grandma and Grandpa Sykora, Grandma Ruisch and Lily. They all left by 2:30. Charlie got up and drove around and around the halls for awhile to show off for Gma and Gpa Sykora. He is just playing games on the computer, reading books and watching videos. We are all so ready to get out of here tomorrow.

I’ll update again tomorrow if I can, but he’s doing great and the only reason we are still in the hospital is because they want to be sure all the PTs and OTs can teach us all we need to know about Charlie for C-dog when we get home. Thanks again for all the prayers and support.

May 12, 2007
Just a quick update before I fall asleep. Charlie had a great day. He’s up to his feeds where he needs to be. He’s only has treatments 2x a day. Dr. S told us that we could go home on Sunday but she wants us to stay until Monday in order to see all the PTs etc that we need to see before heading home.

We had a fun day with Lily here. Charlie got outside in his manual chair for a good chunk and then we went down to visit the Pet Pals (dogs who visit the hospital 2 x a week). Charlie’s favorite was a black lab named Abby – Charlie’s favorite name LOL..

It was a pretty mellow day. Charlie’s making BIG leaps and we are so ready to head home soon.

Friday, May 11, 2007 9:30 PM CDT

We’ve had a wonderful day. The morning was spent working up Charlie’s feeding rate (he’s now at 35 and the goal will be 55 so almost there). Charlie just played on the computer all morning until they came in to remove the bandages from his back for the first time. Man, what an incision! I have photos if anyone cares to see, but I won’t gross you all out with those unless you ask. Shortly after the bandages were replaced, they finally had a room on “the floor” out of ICU to move Charlie. So here we are settled at last!

Not long after settling in the room, PT came in to teach us how to pick him up and get him in his power chair. They made a corset for him so we could use it when moving him. So!!! Just 3 days after surgery, Charlie took a tour in Blue back to the PICU to say hi! It is so great to see him up and he loved it! Needless to say, he’s pooped and sleeping quietly on Pappy.

They said if it wasn’t the weekend, we’d be discharged on Sunday, but since we need to see too many people to learn how to care for Charlie at home who aren’t here on the weekend, we need to stay until Monday. From there we’ll see if we need a day or two in a hotel here before heading home or if we’ll be able to make it half way home then. We will be playing that all by ear.

John left a bit ago to go pick up Grandma and Lily at the airport! We can’t wait to see them. John’s parents are only about an hour away driving in as well. So, Charlie will be busy with visitors this evening!Things are going GREAT – thanks for the continued prayers and support. He’s received so much mail, presents and packages that the nurses all laugh at how much he is loved! Thank you ALL!!!

Ok – I just realized I never posted, so I’ll continue this update. OK – right after I wrote this update and before I posted it, I saw ANTS in our room. I told the nurse about it, not to complain, just to let them know so they could do something. There were only a few. About ½ hour later, the nurse came by and said they had a room just open up so they would get it cleaned and move us there. While I was letting Charlie sleep, before moving more and more ants started showing up!!! I was so glad we were moving. Then the Terminex guy shows up and wants to SPRAY THE ROOM WHILE CHARLIE WAS SLEEPING IN THERE. I told him ever so politely that he needed to leave and come back after we moved rooms LOL.. The nurse was appalled. She told them they had to wait as well… So anyway, we’ve had a busy day…..Grandma, Lily and Grandma and Pepaw came for a visit. Charlie was so excited to see them all and I was ecstatic to finally see my princess Lily. I missed her sweet smile :0) Charlie’s sleeping and is up to 45 in his feeds – so by tonight he’ll be up to normal and we can end the TNA! Yippee!!!! Goodnight! OH -- our new room number and phone number are F6/426 and 608-267-8044.

Thursday, May 10, 2007 10:34 PM CDT

Charlie went all day with out his pappy with the exception of his nap! So he’s back to his old routine which is another BIG step toward going home. We also started his food – albeit slowly (only 5 ml an hour but we will bump it up every 4 hours if he’s doing well). So we are taking baby steps. We will most likely try to get him up in his power chair tomorrow as well. So please continue to send those prayers. They are working. He is such a wonderful spirit. He’s wrapped the entire staff of doctors, nurses, RTs etc around his finger. He is one BIG charmer. Oh and hopefully we’ll have a good night. We only have to do his breathing treatments 4 x a day and then we can let him sleep all night!!!

Thursday, May 10, 2007 2:39 PM CDT

Charlie had a long night last night. He is off any of the sedatives and they are doing his Respiratory Treatment every 4 hours. They use a machine called an IPV which is a mask that goes over his mouth and basically sends pulse waves into his lungs to do internal chest physiotherapy. He really doesn’t like it. He has to have the IPV for 10 minutes and then they have to do our normal cough/suction routine that he is used to at home. He wouldn’t let the therapist do the suctioning – only mommy. Then after his treatment, he’s tummy would be gassy again and we’d have to work on getting that out. It was a long night and early morning. He even had to be re-cauterized because he hadn’t peed!!! Poor guy.

On a GREAT note, Charlie has been off pappy all morning. He went 6 hours and then we let him back on pappy because we wanted him to nap. He did Great. We are going to be transitioning today out of the PICU and will be moved to “the floor” tomorrow. So that’s wonderful news.

On a not so good note, Charlie’s stomach still isn’t working so we haven’t been able to feed him his normal feeds. I am so glad that we have our SMA family to teach us things because we were able to request that the hospital start him on TNA(an intravenous food that it better than normal IV fluid because it has more nutrients). This wouldn’t be typical protocol for a child having this surgery done. But knowing what we have learned and that it can be really dangerous for SMA Type I kids to fast more than 4 hours, we feel very lucky that he is on TNA right now.

Charlie did scare me this morning as well as a few more times. I’ve always heard a lot about SMA kids having Vasos Vagal episodes – where the pulse drops drastically. That happened several times this morning. I think it’s when he pooped and then when he really got gassy and couldn’t get it out. It’s scary, but we couldn’t be in a better place.

He is still charming everyone who meets him. I went to introduce myself to a newly diagnosed family. They have a 5 month old daughter who was recently diagnosed with SMA. She may have a type that has addition respiratory distressed. Meeting them brought up so many memories…

I better post this update so people don’t worry. Charlie is doing great! We continue to be so proud and amazed by his resilience and positive attitude through it all.

Wednesday, May 9, 2007 9:25 PM CDT

Charlie had an awesome day today. As you know, he was extubated to his Bipap at 9:30 this morning. It was such a non-event and something that John and I didn’t need to worry (but we did a lot!!)

It’s really funny. We have a friend who has SMA, Malorie. She is a little older than Charlie and she had the same surgery at the same time as Charlie just in a different hospital. It was so wild that they were doing things at the exact same time – the end of surgery, the extubation everything. I guess they both had a lot of the SMA Angels who are already up in Heaven looking after them both.

I’m sitting here watching him sleeping so peacefully. He’s sats are 99 which is GREAT. He was able to take a 2-hour break from Bipap today. For him to be moved out of the PICU, he needs to be on Bipap just like he needs it at home. Meaning only when he naps or overnight. So hopefully tomorrow he’ll be able to stay off pappy even longer. I think we could have pushed him longer today, but we thought we shouldn’t wear him out. He was staying at 99-100% so it was so good to see.

I’ll update again when I can. But really, he’s doing better than we imagined. His stomach isn’t working very well yet, so we feel so glad that we started the TNA (a intravenous solution) so we don’t have to worry about that yet. So that will be the next BIG hurdle we have to get past.

Hugs to everyone and thanks for keeping Charlie in your prayers.

Wednesday, May 9, 2007 10:37 AM CDT

Charlie was extubated at 9:30 this morning. He's doing well on his pappy (BiPap) and it's GREAT to hear him talking. He's very busy telling us what to do including giving him hugs and kisses.

We are doing our best to control his pain. He is such a trooper and truly our hero.

Another BIG hurdle was crossed this morning. Keep those prayers coming -- they are working!

He's happily singing to and watching Sponge Bob Squarepants!

Tuesday, May 8, 2007 9:30 PM CDT

Charlie is doing well. He is still intubated so we can manage his pain levels better. He is running a low grade fever which they say is normal. He is being very brave. He is not getting any more oxygen through the vent so that is awesome. They plan on extubating him tomorrow morning.

We are over the big hurdle, but still have a long way to go. We appreciate all the prayers and support, and if you can, please keep them coming.

I'll update when I can. Hugs and prayers - Kim

Tuesday, May 8, 2007 3:15 PM CDT

Charlie's out of surgery and we were told by the surgeon that it went great. He's in some pain but we are trying to manage it. He is being weaned off O2 in hopes of extubating him this evening or tomorrow morning.

He is our little trooper. We will update when there is more. HUGS

Tuesday, May 8, 2007 11:02 AM CDT

First, let me say that John and I are overwhelmed by the love, prayers and support we’ve received. We are truly blessed to have so many wonderful people in our lives. A big thanks to our family and friends for all they are doing to help us, both at home with Lily and in prayers for Charlie’s surgery.

Charlie went into surgery at 7:45. They came out about 9 to say that the surgery was started. We still haven’t heard any updates and they are suppose to update every hour and a half to two hours. We are on pins and needles.

Charlie was so funny last night and this morning. He loves being the center of attention and he was doing his best to entertain everyone. He is our amazing little guy.

I’ll post again when we hear an update.

Thursday, May 3, 2007 4:06 PM CDT

Just wanted to send an update on Charlie and ask for your prayers. We will be leaving on Sunday to travel to the University of Wisconsin Hospital in Madison for Charlie's growing rod surgery. We will have his pre-op appointment Monday and they will let us know what time his surgery will be on Tuesday. We are very nervous, but know that Charlie is a strong and amazing boy. Please pray for Charlie, that he will come off intubation in a timely manner, that his pain will be manageable and that his recovery will be speedy so we can be discharged soon. It will be a long healing process at home as well, but we all know that it's so much better to be home than in the hospital. We've been told to expect 5-7 days in the hospital and then they want us to stay in Madison for awhile.

Please also add some prayers for Lily and Grandma. They will be staying here (with the exception of a weekend visit) so that Lily can finish her school year. We will miss them.

Amazingly so, there are three other SMA friends who are having the SAME surgery as Charlie. Syndey, Malorie and Charlie are on Thursday and then Erinne on Friday. Please keep them all in your prayers.

We are also having a lot of our SMA friends getting sick. I thought cold/flu season was over, but apparantly it's hanging on. Prayers for all of them...

I will hopefully update daily at the hospital - or at least as much as I can. Hugs to all!

Friday, April 27, 2007 5:08 PM CDT

In Memory of our dear friend, Kalair. Her courageous life with SMA ended on Tuesday, April 24. Kalair – in our hearts forever. Love and prayers to her family.

Wednesday, April 25, 2007

As usual, I start an update and don’t finish. It’s now been a week since I started this, so I’ll complete it from here. It’s been a hard weekend. Our dear friend Kalair, who was the first little girl we met with SMA after Charlie was diagnosed was really sick and was admitted to the hospital on Friday. After a courageous fight, our dear sweet friend earned her wings and flew to Heaven on Tuesday morning. Our hearts are breaking and we hope you keep her family in your prayers.

Wednesday April 18, 2007

We took Charlie to school yesterday for his class photo. All the kids were so happy to see him and Charlie relished being back with his friends. It was a short day because it was an early dismissal day. He had photos, recess, snack, reading and then home. But man, was he happy. He had Blue with him so it was so much fun watching him play outside on the playground with his friends. The kids were having fun running around with him. It was a great day.

Today, we took Charlie and Blue to Lily’s school to see her Spring Musical. Lily did a GREAT job and Charlie loved yelling and clapping for his sister – they are quite a pair. Charlie enjoyed driving Blue in the hallways at Lily’s school. He kept asking to go faster and faster. After that, he had therapy and he enjoyed buzzing up and down the halls at the office building. He says hi to everyone he sees and is just Mr. Social. We are getting ready now to run down to Abby’s nursing school to visit with 90 nursing students. Wish us luck! Ok, we are back. Charlie had so much fun cruising in Blue around in the halls at the nursing school. He loved being the center of attention with Abby and a few of her friends. He was playing chase with them before class started. I was so proud of him during the presentation. He was in a lecture hall in front of at least 40 students. He was being a ham. He was so excited to see a BIG screen filled with photos of he and the family. He would get mad at me if he couldn’t see. I think the presentation was a success. The students asked good questions and it was great to at least inform so many future nurses about SMA so that they will have some back ground if they ever come across a little baby fighting this awful disease. It was nice to show a group of future professionals that there is hope and there are options for our kids.

Monday, April 16, 2007 10:43 AM CDT

I’ve gotten back into old habits of starting to write updates and then never finishing them or posting them. We’ve been home for two weeks now and I still feel like I’m playing catch up. I hope every one had a very Happy Easter! We had a great day of fun with the kids at home and then with Grandma and Uncle David later in the day. Unfortunately, cousin Sidney had Chicken Pox, so we missed seeing them. The kids woke up Easter morning excited to see if the Easter bunny had come. They came down stairs and started hunting for their baskets and eggs. Charlie loved driving Blue around searching for eggs and Lily was a great little hunter too. Then it was off to Grandms’s for a yummy lunch and another fun egg hunt. Charlie and Lily wanted us to hide them again so they could have more fun.

We are on a whirlwind this month. Lily has so much going on at school and her soccer has started as well. I can’t believe she is on the down hill slide for Kindergarten being over. We need to get organized and figure things out for Charlie’s surgery in May. It’s been so easy putting it on the back burner and being in denial that we are really going to be doing this so soon. April is half way over and we leave for Madison in early May. Crazy how fast time is flying.

Today is a beautiful day (finally after weird cold last week and even snow this weekend). I sure hope that Spring is here to stay. Charlie and Lily are so ready to be playing more outside.

I better run so I get a little update posted. I will try to post Easter photos soon. Hugs to all.

Monday, April 16, 2007 10:42 AM CDT

Happy Easter! I hope everyone had a great day. The kids woke up and went on an Easter egg hunt here at home. Charlie loved driving Blue around searching for eggs and Lily was a great little hunter too. We went to Grandma’s for a yummy lunch and another fun egg hunt. Charlie and Lily wanted us to hide them again so they could have more fun.

We’ve been home for a week now from our trip and we are all still trying to get back into our routines. It’s amazing how you need a vacation just to catch up from being on vacation :0)

We are on a whirlwind the next month. Lily has so much going on at school and her soccer has started as well. I can’t believe she is on the down hill slide for Kindergarten being over. We need to get organized and figure things out for Charlie’s surgery in May. It’s been so easy putting it on the back burner and being in denial that we are really going to be doing this so soon.

Saturday, March 31, 2007 9:53 PM CDT

I’m sitting in a hotel room in Russellville, AR on the last night of our vacation. We will be home tomorrow after the two most incredible weeks. As sad as the kids were to leave the ocean (Lily cried), we are ready to be home again. We’ve been away from home for a long time.

We had so much fun in Destin, but it was definitely a lot more relaxing than the week before in Orlando. We spent a few hours every day at the pool, the ocean or on a pontoon boat watching Dolphins. We napped every afternoon and just enjoyed down time with the family. We actually cooked at home every night but one – just because it was nice to stay home and not fight crowds. We were blessed with incredible weather the whole week on the beach. Charlie loved playing in the “sand box” and the kids were crazy about playing in the waves with Daddy. We built sand castles, buried our feet in the sand and just enjoyed the beautiful ocean.

I’ll try to post photos of the Destin part of our trip soon. It will be good to be home and I’m sure I’ll be playing catch up for awhile.

It’s also hard to believe that today is the first anniversary of John’s last day at American Century. The year has gone so fast, but it also seems unreal that it’s only been a year.

Monday, March 26, 2007 9:21 PM CDT

Today is the memorial service for our dear friend Logan Watt's. He was 2 years old and such a strong boy. Our hearts and prayers are with Matt, Deb and their family on the loss of precious Logan. It was very unexpected and as always losing one of our SMA angels friends hits closer to home than we want to think about. Please keep his family in your prayers. Fly High Angel Logan, run free like you were never able to do here on earth.

Sunday, March 25, 2007 9:50 PM CDT

Monday, March 19, 2007

Today we checked into Give Kids the World (GKTW). And all we can say is WOW! What an amazing place. Everyone is so friendly and the place is a fantasy land. Just today, we’ve been on two carousel rides, saw Old Henry the snoring tree, played with blocks inside the Enchanted Castle where Lily looked into a magic mirror and saw that she is truly a princess. After having a snack of ice cream we went on to ride a train, drove some mini motorized boats and played with some model trains. We were pooped! We rested up before a great dinner at the Gingerbread House and another trip to the ice cream shop. The kids are all safe in bed and probably dreaming of their big day at Disney tomorrow! I know I will be! I’ll update more when I can.

Tuesday, March 20, 2007

Today was a GREAT day. We are all wiped out and the kids didn’t make a peep (after we had to fight them to get them to bed – they weren’t done having fun) once the lights were turned out. They should be exhausted! The day started out with a chance to meet the mayor of GKTW, Mayor Clayton, as well as a fun clown who made a balloon dog for Lily and a yellow sword for Charlie. Then we went to spend a full day at Disney World. What an adventure we had. We rode the ferry boat over to the Kingdom. It was fun watching Cinderella’s castle getting closer and closer. We worked our way up Main Street towards the castle and then went to find Fantasyland. It was just amazing how we were treated at Disney. Charlie wore his Give Kids the World button and anytime any cast member saw it, we were treated like Kings and Queens. We went to the front of lines, had special back stage viewings with characters and more. We started out on The Many Adventures of Winnie the Pooh – a fun ride that the kids both enjoyed. After that ride we were able to have a meet and greet with Winnie the Pooh and a short while later Tigger too. The kids pulled out their autograph books and were so excited to have the first of MANY signatures. The rain started at this point so we bought everyone rain ponchos and ended up going on the Peter Pan ride. After that ride, the rain was mostly over. We went on the It’s a Small World ride and then the Dumbo ride. The kids loved them all. Then we went through Minnie’s house. After that, it was time for the parade, so we went to watch it. Several characters saw Charlie’s button and either came over for a hug/high five or waved and pointed from the floats. Lily and Charlie felt so special. After the parade, it was back to Fantasy land for some visits with so many of the great Disney characters. We were escorted to the front of all the lines and even had the Princesses ask us to wait until no one else was in the room so we could have a special photo with ALL of them at once. It was incredible. We got to see Belle, Cinderella, Snow White and Prince Charming. We also got to see Daffy, Donald, Minnie, Goofy, Chip, Dale and Pluto. The kids were loving all the signatures.

After we left that area, we were told where we could see Mickey again. So we went to his house and had another private visit with Mickey.

We accomplished more at Disney in that first day then we would have in three days without the VIP treatment we got. It was wonderful not having to wait in any lines and to be treated so well. It truly is a place where dreams come true.

We came back to GKTW and had a wonderful dinner and got to see Mayor Clayton again.

Wednesday, March 21, 2007

Today we spent the morning at Sea World. We watched a couple of the fun shows. The first was the Dolphin show and then we went to the Sea Lion show. Both were great fun. The kids loved seeing the animals perform. We also went to visit the penguins and the alligators. We finished off the morning feeding the dolphins and the sting rays.

We then went to Disney/MGM were the kids got to watch the new High School Musical parade and show. It was a zoo with all the kids going crazy. We also got to meet Buzz, Woody and several of the big Green Army men from Toy Story. Then it was off to the Beauty and the Beast show as well as Voyage of the Little Mermaid. The kids were tired after another fast day, so it was home in time for a wonderful dinner and ice cream! The kids wanted to ride the merry go round again so we did that a few times before bed. We also got to go see where our star was placed on the ceiling. There are more than 50,000 stars (one for each Wish child/family) on the ceiling.

Thursday, March 22, 2007

We had a fantastic day today! Today was our photo at GKTW with Mickey and Minnie. We also got to see Pluto and Mary Poppins. After breakfast at the Gingerbread House, we went to Disney’s Animal Kingdom. The first thing we did when we arrived was go to the Lion King Show. It was incredible. Lily was chosen out of the audience to show our side how to “roar like a lion”. She did a great job. Then when the show was almost over, a cast member came over and asked if Charlie could be in the parade around the stage – she took Lily too. You should have seen Charlie and Lily’s faces. The smiles were heartwarming. Charlie LOVED it and I don’t think I could stop grinning ear to ear. It was a little nerve racking when Charlie was taken around the other side the stage. But man, so worth it for Charlie to feel like a part of the show! From there we went to see the Pocahontas and friends show. The kids really enjoyed the show as well – even though it wasn’t anything like the Lion King Production. Then it was off to the Nemo show ~ another FABULOUS production. As usual, we were treated like rock stars and were in the front row. Charlie and Lily really enjoyed it. And luck was with it, because we missed a short rain shower while we were inside for the show. After that, we headed over to take the Kilimanjaro Safari ride. We rode in an open jeep through the “jungle”. The kids loved it. We saw lions, leopards, hippos, giraffe, zebras, lots of gazelle and deer, water buffalo, ostrich, and elephants. I’m sure I’m forgetting something, but what a fun adventure that was. We then rode a train out to meet Pocahontas and Rafiki. Again, we were treated like VIPs. Our final fun at Animal Kingdom was It’s Tough to be a Bug. Charlie wanted to leave at the very end because it was scary LOL. Then it was home for dinner and Christmas at Give Kids the World. We thought the fun was over when we left the park, but did we have a GREAT time at Christmas. The kids got to see Santa and Mrs. Claus and pick out a present. The kids also made their pillows in the Elmo pillow machine. We were headed home by then, but one of Santa’s elves outside took Charlie and danced with him in his chair. She did a train with Charlie as the engine for 30 minutes! Not kidding. Charlie would yell more more whenever she tried to stop. We played out there for an hour in the “snow” (bubbles blowing from the roof). We ended the night with another trip to the ice cream shop.

Friday, March 23, 2007

Today was our last full day at GKTW. It started with a special visit by Barney, Baby Bop, DJ and Jimmy Neutron. Then it was off to another wonderful breakfast at the Gingerbread house before heading to Universal Studios. Although, the staff was amazing at Universal as well, Charlie was so sad when he couldn’t ride on any of the rides. We did get to see several fun shows, such as Shrek and Barney. We also got to meet several characters like Woody Woodpecker and Winnie, Scooby Do and Shaggy, Sponge Bob, Dora, Barney, Shrek, Donkey and Bullwinkle. It was a fun day, but we came back to GKTW so that we could enjoy the warm pool before dinner. We had a quick swim, quick bath and then ordered pizza to be delivered. The volunteers at GKTW are so wonderful and the food was great. It was so nice to go a whole week without cooking a meal or cleaning up after dinner. After dinner it was up to the Princess and Pirate party where Charlie and Lily got tattoos, hands painted, make up done and then some fun dancing.

Saturday, March 24, 2007

John took Abby to the airport really early this morning. Lily woke up and saw that Abby was gone and crawled in bed with me bawling. She was so sad that Abby was gone. It’s great how much the kids love Abby. She is a special part of our family now.

We spent our last morning at GKTW. We had a nice breakfast again and then spent time on the merry go round and in the Castle of Miracles. We also went back to ride the train a few times before having to pack up and leave. It was so sad to leave GKTW. It is such a magical place and everyone is so incredible – from the staff to the 1000s of volunteers.

We got in the car and drove to Destin were we are staying for the next week. We think the kids will be bored after the excitement every day last week :0)

Sunday, March 25, 2007

Today was a wonderful day. The kids slept in (sorta) and then we eat breakfast and went to Wal-Mart to get supplies for the week. We then took the kids for a short trip to the beach. Lily and Charlie had so much fun in the water. John would carry Charlie and dip his legs and hinny in the water. Then he would jump the waves with Lily right beside him. Charlie wanted to make sure he was in the action just like Lily :0) We stayed about 1 ½ hours which was still probably more than we needed :0) I’m sure we’ll be back every day. I’m off to bed, but hope to update more later.

We’ve just been having an incredible time these last days. It’s been like nothing we’ve ever experienced before.

Friday, March 16, 2007 9:38 PM CDT

March 12, 2007

We had two special visitors tonight ~ Andrea and Jerry volunteers from Make A Wish. It was such a wonderful surprise for the kids. They came bearing 6 bags full of goodies to enjoy on the trip – matchbox cars, videos, polly pockets, little pet shop stuff, coloring books, stickers, crayons and fun blankets for the car. The kids were in Heaven and Charlie couldn’t stop saying “oh thank you thank you!” it was so much fun for the kids! We leave on Friday and we are all SOOOO excited for the once in a lifetime trip to Give Kids the World/Disney. THANK YOU Jerry and Andrea for the wonderful kick off to our trip!

March 16, 2007
I’m sitting here in a dark hotel room in Paducah, KY. We’ve made the first leg of the trip to Florida without any incidents. Charlie is sleeping peacefully next to me. He can’t stop talking about seeing Mickey. We got here around 6:30 and John took the kids for a quick swim. Both Lily and Charlie LOVE the pool so they were very excited. Tomorrow we’ll hit the road early and see how far we can make it. Just thought I’d update while I can. Not sure if I’ll have access or not at any of the next locations.

We are sending prayers for a few of our sick SMA friends, Sophia D. and Julia K. I haven’t heard updates about Ryan or Ally, so if you have spare prayers you can add them too.

Monday, March 12, 2007 5:27 PM CDT

Lily is finally over her cold. Luckily she never got a fever, but her cough was awful. I took her to the doctor a week ago Sunday and she has an ear infection. She hadn’t been complaining about the ear so that was a big shock. So she been on antibiotic for her ear. It took more than a week but she is finally better. Charlie came down with a runny nose last week as well. He’s still a little congested, but overall he seems to be doing well. We gave him the whole “cold routine” of CPT, Nebs, Postural Drainage, etc for the last week and it really seems to help.

I can’t believe we head out on Friday for Florida and Charlie’s Make A Wish trip. Where is the time going!

John’s parents came down on Friday night for a long weekend. We took them to the KC Auto Show on Saturday because we were hoping to see a couple different conversion van companies – but there weren’t any there! Oh well. On the way home we stopped by the Liberty Memorial/WWI museum. We’ve never been and it is really neat. You definitely need to go without a 3 and 5 year old though! They lasted about an hour and they were ready to go. That night, John’s parents, John and I went to church and to a nice dinner and movie. It was fun to get out with them.

Sunday Lily and I took Grandma Sykora with us to my nephew Bobby’s birthday party. Lily had fun dragging Grandma Sykora, Grandma Ruisch and me through the inflatables. The party was at a place called Pump It Up – there are 6-7 different inflated slides, jumpers and obstacle courses. It is such a work out LOL. I think both Grandma’s were ready for naps when we were done.

Charlie is napping and I’m procrastinating. I’m suppose to be packing or at least getting things out for the trip, but I’m so overwhelmed I don’t know where to start :0) It will be all worth it when we get to Florida, but I hate packing. I better go try to get some more done. I’m so glad to say that Spring appears to be here! Now, maybe we’ll get rid of all the germs and sickies going around.

Sunday, February 25, 2007 1:14 PM CST

I’m going to stop apologizing and just realize I’m a sporadic updater. We have had a busy few weeks. We had friends over for Super Bowl Sunday. Charlie and Lily loved seeing Carrie and Drew. They had fun playing with them while watching the big game. It was so nice seeing them as it had been a long time.

The next big thing was Valentine’s Day. We took Charlie to his class party and all the kids were so happy to see him. Charlie was so excited to be back at school. When the party was over he was so sad and said I was mean because I was taking him home! I wish we could start bringing him back to school, but it’s too germy still and we don’t want him sick for his big Make-A-Wish trip next month!

Last weekend, we drove up to Des Moines, Iowa to meet up with Mona, Rick, Anna and Sarah (John’s sister and her family) for a long weekend of swimming and playing. It was so much fun. We hardly saw Lily because she and Sarah were playing in the other hotel room every free minute they had. Anna played a lot with Charlie as well as the other girls, so we seemed to see more of her. It was a fun weekend and the kids are still talking about wanting to play with Anna and Sarah again soon.

On Wednesday, it was so nice and warm (finally) that Charlie and I took Blue to his therapy appointment and then he wanted to go to Wal-Mart to drive some more. Of course, he had to go to the toy section and point out all the toys he just HAD to have. Needless to say, he came home with a little something – I just can’t refuse :0)

It was nice for the rest of the week, so we took advantage of being able to be outside more.

Yesterday, we went to our friend, Kalair’s 7th Birthday party. Kalair has SMA just like Charlie. She is such an inspiration to us all. We owe so much to her wonderful mommy Liz. It was Liz who we talked to when Charlie was first diagnosed. She helped show us what we needed as well as came over to help us make sure we were doing everything right (she brought another SMA mommy – Kristal – with her too) They were and still are such big help to us whenever we have questions or problems. Anyway, Charlie was having so much fun playing with Kalair and Arturo (Kalair’s little brother) that he didn’t want to leave. So we’ve promised to have another play date soon.

Today, we are just hanging close to home. It turned cold again…….We can’t wait for Spring to be here for good! 19 days until we leave for Disney! We are so excited counting down the days!!!

Saturday, February 3, 2007 3:17 PM CST

Once again, almost two weeks sneaks past me without an update. We took the kids to High school musical a week ago Tuesday. The kids had fun. It was so loud and all the screaming in there made me feel like we were at a Rolling Stones’ concert of something. It was sold out and there were 1,000s of tweeners screaming for these people. It’s amazing to see. WE left at 9 because it was so late to keep Lily and Charlie out on a school night. But I heard we only missed about 20 minutes. Lily was pooped and fell asleep on the way home. Not Charlie though. He was wired :0)

Later that week, I took Charlie to Target so he could drive Blue for awhile. It is so fun shopping with him because he is so good about staying close by and he has so much fun cruising around on his own. He spent a lot of time in the toy section trying to figure out what he wanted to buy. Oh, he is such a three year old. But it’s GREAT to have him able to do that and check out things on his own… I talked him out of a Buzz Lightyear figure – it was big and the buttons were too hard to push. Instead, he made it home with a train called Rosie – from the Thomas collection.

On Sunday, we took the kids to get some new fish at the pet store. Charlie took Blue there as well, and did a great job even in the tight quarters of the fish section. We picked out four fish and a shrimp. It’s been almost a week now and we only have two left alive. We aren’t sure what’s going on, but we also lost two of our original fish that we’d had for about a year. We don’t think it was our water, but we aren’t aquarium experts!

Last week seemed to go very fast. John and I actually had TWO opportunities to go to the movies. Since we aren’t taking Charlie to school right now, we went to see Dreamgirls on Thursday in the middle of the day. Charlie was home with Nurse Lori and Lily was at school. Then on Friday night, we had dinner with friends and then went to see Notes on a Scandal after that. Both movies were enjoyable and it was nice to hang out with my hubby.

Today we went to see Elmo Makes Music at Kemper Arena. It is such a brutally cold day that we weren’t too sure we wanted to take Charlie out, but we bundled him up and ran from the van into the arena. The show was definitely worth it. We were on the floor near the side of the stage where a lot of the characters ran in and out of the staging area behind the stage. So Charlie and Lily got several high fives and handshakes from a bunch of the gang from Sesame Street. We weren’t able to get any photos of that, but we did take some photos of the family as well as the show on stage. I’ll post some later.

This afternoon, lily is at a birthday party and John is making Chili for tomorrow’s super bowl. We are all counting down the days to Spring Break. We leave March 17 I think to drive to Orlando for Charlie’s Make A Wish trip to Give Kids the World and all the theme parks. It should be a ton of fun.

I’ll sign off and try to be better at updating.

Wednesday, January 24, 2007 10:48 PM CST

We had a very busy day yesterday. Lily’s school was canceled because of a water main break. So I took advantage of a weekday off to take Lily and Charlie to see a movie. We went with nurse Lori and Grandma. The movie was Arthur and the Invisibles (I think that was the name). Anyway, the kids enjoyed themselves. It was a good movie. Then the best part of the day was going to High School Musical. We had seats in the handicap suite, which was FAR away from the stage, but as loud as it was that wasn’t a bad thing. It cracks me up how much those actors are superstars to these kids. You wouldn’t believe the screaming and chanting for them. I felt like I was at a Rolling Stones concert or something. We put cotton balls in the kids’ ears to make it a little less loud. :0) But it was fun. The kids had a great time and we snuck out early (about 9) because we didn’t think keeping out our 3 and 5 year old so late on a school night was worth it for us. Lily fell asleep in the car on the way home and hardly woke when we got home even with taking her potty and putting on PJs. I think they both had fun.

We also had a good week. Nothing too exciting during the week, but on Friday we asked Abby (a dear friend) to meet us out for dinner at Macaroni Grill. She came and it made the kids so happy. We found out that her birthday was the next day, so it was fun to get a cake and help her celebrate. The kids just love singing Happy Birthday. After dinner, Abby came home with us to play some games before bedtime. We all love Abby.

It started snowing on Saturday just in time for John and Lily to go to the Father/Daughter dance. They were invited by three of Lily’s schoolmates and their fathers to join them at their club for the dance. They had a great time and John was even sweet enough to plan ahead and get Lily a corsage. He even thought about asking the other families if they wanted him to get one for their daughters. I was very impressed. John was even good about taking photos. I hope to have them up soon.

Lily went over to her friend Julia’s house on Sunday for the day. Julia’s dad took them sledding for several hours at a park near their home. I guess it has a pretty good hill to sled down. We bundled up Charlie and took him out sledding in the neighborhood. I was his ‘horse’ and pulled him up to a few neighbors’ housed for a visit. He was having so much fun. It was a great day because it wasn’t overly cold and the snow was perfect. Later that night, Lily and I went to meet my mom, brothers and nieces and nephew for dinner. It was a fun ending to a wonderful day.

Monday was the start of Lily’s week at school of being “Star of the Week” We made a huge poster board collage of photos of her from baby until now along with lots of photos of her school friends. Then we brought star shaped cookies for a treat. Grandma went up to meet her for lunch so it was a great start of Lily’s special week. Today, John went to the class before lunch and read one of Lily’s favorite books – The English Roses by Madonna. Then he ate lunch with her. We have something fun planned every day this week.

I hope all is well. It’s been a good week.

Monday, January 15, 2007 4:20 PM CST

It’s been awhile once again since I’ve updated. I don’t know why it’s getting so hard to do it on a regular basis :0) We’ve been having fun as usual. The kids really enjoy bowling, so we went again. Both Charlie and Lily are getting better! Charlie uses the ramp, but he can hold/balance the ball at the top of the ramp and let go all by himself. It’s so much fun to watch him doing things by himself. Lily has developed an interesting way of running to the top of the lane and throwing the ball. John and I cringe every time the ball drops, afraid that it will hit her foot or break the lane!

We had been enjoying a very warm winter. It was in the 50s for several days until overnight it dropped drastically and since Friday we’ve been under winter storm warnings. We didn’t get much snow, but the sleet/ice was pretty substantial. It looks like we have a bunch of snow outside, but when you try to play in it – it’s solid ice. It’s pretty, but cold. High today of 17 with wind chills below zero. A good day to stay inside for sure. The kids have a break since it’s MLK’s birthday. I’m glad we didn’t have to get Lily up and dressed for school today.

Charlie’s a little under the weather so we’ve been doing his chest physiotherapy at least three times a day. It’s about an hour treatment from start to finish, so we’ve been watching a lot of movies in his room the last few days. We are just hoping we can keep Charlie from getting bad. There have been too many really sick kiddos already this winter. We’ve had several of our SMA buddies in the hospital.

We’ll keep Charlie home from school tomorrow and most likely for the rest of the week. We’ll see how it goes. Charlie and I haven’t left the house since Thursday. It’s easy to see how you get cabin fever :0)

I better run. Charlie’s not wanting to nap, so I should just get him up. Hugs!

Monday, January 1, 2007 10:08 PM CST

Happy New Year! We pray for a healthy happy 2007 for all of our family and friends. We’ve been having fun having both kids home for a couple weeks. Lily’s had some fun playdates and Charlie LOVES it when Lily’s friend Julia is over. He has the biggest crush on her. The girls performed many dance shows for us too. It’s funny how they go upstairs to rehearse and then they have a whole routine. Charlie thinks it’s funny too.

We went out to dinner with Grandma and the kids for New Year’s Eve. We go to the same restaurant a lot and always have the same waitress. It’s nice that they know us so well there. When we got there, our friend Gary (who waits on us) had two presents for the kids on the table. It’s been a never ending Christmas for them this year :0) Gary is such a wonderful friend! After dinner we drove to two different places to look at Christmas lights. My parents took me to this one house when we were little. They turn the entire house into a Santa’s workshop. There are things on the roof, in every room at the front of the house as well as in the garage and on the drive way beside the garage. Lily and Charlie were in awe. It was so fun to go to a place that I went when I was a little girl. As far as New Year’s Eve goes, I think I made it up to 11:30 so once again I didn’t ring the New Year in. When Charlie woke to be turned at 1 AM, I made sure to wish John a Happy New Year’s then!

Today we had company over to play and watch all the football games. Charlie and Lily enjoyed spending the afternoon playing Will and Weston; they are 5 and 3 so perfect ages for Charlie and Lily. It was a nice way to start the New Year off. Lily returns to school on Wednesday and Charlie on Thursday so it will be back to our old routine soon.

Hugs to you all.

Thursday, December 28, 2006 10:13 PM CST

Lily and I were taking a shower to get ready to go to dinner and meet some friends on Friday (December 22) Lily and I noticed she had a rash all over her body. Her face had been really red all day, but I just thought she was warm from all her dancing. But we took her temp and she had a low grade fever. The rash, the doctor thought might be an allergic reaction to the antibiotic she was on for a urinary tract infection, but the fever wouldn’t be from that. So we kept the kids apart and hoped that it wasn’t something bigger. We have several SMA friends who are very sick and hospitalized. It’s the worse time of the year! I HATE winter!

We’ve had a fun few weeks until this illness. Lily had her holiday party at school a week ago Thursday. Charlie and I had fun at his school and then I took him home and went to Lily’s school to help with her party. It was the last day of class until the New Year as well as her holiday party. It was fun and Lily was ready for a break from school for awhile.

On Monday, Lily, Charlie, Grandma and I went to see Happy Feet. The kids loved it. It was a cute movie. Charlie’s secret Santa got him a Happy Feet that dances around when you wind it up. He loves it even more now that we’ve seen the movie.

Tuesday was Charlie’s last day of school and Lily came with us to class. I thought she would have to sit in the corner and play her video game until the holiday party, but Miss Rachelle is so super sweet that she included Lily in the whole classroom routine. She had fun and Charlie loved having his sister there with him. The holiday party was so much fun.

We have been having so much fun with both kids home for winter break. Lily was all better by Christmas eve thank goodness since we had a hard time keeping them separate. We went over to Grandma’s to celebrate Christmas. What a wonderful evening. We had a great dinner and then the kids opened TOO many presents. They had a fun-filled evening. They were so excited to open all their gifts. We stayed out too late and the kids were pooped by the time we got them in bed.

Christmas day came and Lily slept in, but Charlie was up bright and early yelling at us to get him up! The first thing he asked me was “did Santa come?” “I want to open my presents” He was so excited. We had to wake up Lily because she was still sleeping. We had a great morning opening presents, making a big pancake breakfast and just hanging out. The kids wanted to open all the toys and play all day.

On Tuesday we took the kids bowling. Charlie and Lily had a blast. Then on Wednesday we took them to see Charlotte’s Web, so today we hung low. Charlie played on his computer all day with Nurse Lori. Daddy got him so many new video games to play.

I’ll try to be better and post at least once a week. I know this post was confusing, because it jumped around a little, but I was trying to remember all the major things.

Prayers please for our sick SMA friends, Sophia, Malorie, Emma, Abraham, Kyle.... and I'm sure I'm forgeting someone. I HATE winter and what it brings to our SMA friends.

Monday, December 11, 2006 3:47 PM CST

A lot has happened since Thanksgiving Day. John’s parents were in town for the holiday and the kids sure missed them when they left. I woke up on Saturday morning at 5:25 a.m. to a phone call from my mother to tell me that my grandfather passed away. He was 96 years old. He and my grandmother had been married for more than 70 years and still lived together at home. I really thought he’d live forever. My grandfather was the one who walked me down the aisle when John and I got married, since my father passed away a few years earlier. I drove up to Waterloo, Iowa on Tuesday for the visitation and back that night because I had an appointment on Wednesday morning that couldn’t be missed. I was very sad to only make the visitation and have to miss the funeral. It was nice to get to see most of the family though. And it makes me sad that it takes something like a funeral to get everyone together.

We got a big ice storm on Wednesday afternoon/night. Even though the roads weren’t too bad Lily and Charlie had their first snow day on Thursday! Later that day it started snowing and wouldn’t quit. We got more than 8 inches, which is unheard of this early in the year. So, another snow day on Friday! We bundled the kids up and took them out sledding in the snow – but it was sooo cold we didn’t last very long. We even had a cold weekend – so cold that the snow is still hanging around and it’s Wednesday. .

On Saturday, even in the bitter cold John went to the Neb/OU game with some friends. It was a great time (with exception to the game LOL) but it was fun for them. Lily went to a Nutcracker tea party with some friends and had a great time. Charlie and I hung out close to home.

Sunday, Grandma, Lily, her friend Julia, Cousin Sidney and her friend Kelsey went to the Friends of Overland Park Arts Tea Party. It was a lot of fun too. After that we went to a Christmas party at a friends house. Charlie and Lily had a blast. There was a story telling group who performed for about 45 minutes and all the kids were enraptured.

That’s about all that’s been going one. Charlie went to school yesterday. We are so excited that he is staying healthy enough to keep going. We weren’t sure what to expect when we started school.

Oops, never posted that update so I’ll just add to it. It’s now December 10. Charlie and Lily both made it to school all week last week. We are so happy that the kids are staying well. Otherwise, not much exciting happened.

On Saturday, we took the kids up to a church that was not our normal church (we are part of a Bible study group from a different church than ours and it was theirs). We all met up there to put together sack lunches for homeless people. The kids put stickers and colored on the brown paper bags. It was fun to see. But the best part was the HUGE narthex area! Charlie had so much fun cruising around in Blue chasing and being chased by the other kids there. It was such a great place for Charlie to drive, that we may have to find a way to come back again!

Today is Sunday, we took the kids to Sunday school and Charlie didn’t want to leave :0) He made an angel and Lily made a Xmas ornament. They also practiced the songs that they will be singing next week in the Christmas pageant. After that, we all made some chocolate pretzel candies. It was very cute watching Charlie and Lily work so well together. Their jobs were to help lay out the pretzels, put the chocolate kisses on top as well as peel off the paper from the kisses when we had to do that again (Lily and I had a bunch of kisses already out of the wrapper from yesterday). Charlie kept saying that they were a good team! And he was right. I hope to upload a ton of December photos soon, but you know how that goes. Hugs and Blessings to all of you.

Friday, November 24, 2006 6:55 AM CST

A looong overdue update. I broke Charlie’s/my laptop and finally have a borrowed one so I can update. Hopefully, we’ll be back on our own soon.

John gave me a “day of beauty” for our anniversary/my birthday present. I spent all day Friday (Nov 7) getting a massage, facial, manicure and pedicure! Can you believe it! John had both kids all day and even took Charlie, Lily and her friend Julia bowling. So both the family and I had a great day :0)

We’ve had a good last few weeks. Charlie wasn’t able to go to school for a week and a half because his tummy was a little upset. But he was fine other wise. Charlie made it back to school last Thursday. It was awesome to see all the kids in his class run up excitedly yelling “Charlie’s here, Charlie’s here” – he was so thrilled to be back at school. We went to school again this Monday and brought Blue since it was gym day. Charlie sure enjoys school.

Lily had show and tell last Friday for the letters “CH” and she asked if she could bring Charlie. Daddy and I loaded up Blue and took Charlie to Lily’s class. It was fun for Charlie to cruise around Lily’s school. The kids in her class were all wonderful and Charlie enjoyed himself. After that, we stayed and went to lunch with Lily. It was a nice morning.

Yesterday was Thanksgiving! Boy do we ever have a lot to be thankful for: good health, good family, and good friends. We are truly blessed by so much. John’s parents came in to help us celebrate. John and I made our first Thanksgiving dinner. John did an awesome job on the turkey and mashed potatoes! And I made a wonderful stuffing from a friend’s recipe. Everything turned out so well.

I just wanted to update quickly while I had the chance. I know I’m missing some fun from our last few weeks, but at least you know we are still alive and well!

Monday, November 6, 2006 8:48 PM CST

Wednesday was Uncle David’s birthday. Lily and I tried to sing Happy Birthday to him in the car on the way to school, but unbeknownst to us, his phone cut off. So we waiting until after school for all of us to do it together on the phone. It was a pretty uneventful day. The kids were tired from the Halloween fun from the day before.

Thursday, Lily and Charlie were invited to a birthday party for CJ, a boy that Lily has gone to school with and played soccer with since PS. It was out at the T-Rex restaurant. It was so much fun. The kids did a dinosaur dig, played on computer touch screen games, explored caves, painted dinosaur rice krispie treats and ate pizza. It was such a fun afternoon. As usual, I took a ton of photos, so hopefully, I’ll upload soon since I’m so far behind. It was also Grandma’s birthday! Lily slept over with Kate and three other friends! Brave parents, don’t you think? Anyway, Grandma came over for dinner to celebrate with John, Charlie and me. It was a nice evening and meal.

On Friday, John gave me a day of beauty. I had a full day of relaxation ~ massage, facial, manicure and pedicure! He took the kids bowling! Then I met some friends for drinks. It was a wonderful day. He gave it to me for our anniversary and for my upcoming birthday. After drinks, I came home and we all went to our favorite Mac Grill for dinner. It was a full day!

Saturday wore me out. Lily had THREE birthday parties to go to. We left at 9:30 a.m. and didn’t get home until after 5! She had a blast though. Luckily, I was able to hang out in the car some and relax. It’s funny how tiring kid’s bday parties can be. Charlie and John hung out at home all day. I think they had a good time if not, uneventful.

Sunday was another mellow day. We went up to the neighborhood playground for a while and Charlie buzzed Blue around in the parking lot up there. He loves that and he’s still going so fast! We are enjoying a break from the cold weather for a while that’s for sure. That evening we went to dinner to celebrate Grandma’s and Uncle David’s birthdays with the whole family. Charlie had some GI issues and so we left Lily with Grandma and took him home. It’s been a long time since Charlie’s asked to leave and go home. He’s fighting something I think! So prayers that he stays well!

Today, we hung out at home to try to keep Charlie well. I hope he’s able to make it to school tomorrow, but we’ll play it by ear. He’s just “off.” Well, I’ll sign off now. I hope to get some photos uploaded tonight! I’m so far behind on that. Hugs!

Wednesday, November 1, 2006 9:09 PM CST

Happy Halloween! Hope you all had as much fun as we did! Last week was pretty uneventful. Charlie didn’t have school because of conferences, so we hung mostly around the house ~ although we did have an orthopedic surgeon appointment on Thursday. We went for a third opinion at KU Med. They have a scoliosis specialty clinic there. The day started out well, but then the doctor had to go away for an hour, so it was a lot of waiting! The good news is that Charlie’s scoliosis hasn’t progressed. The bad news, he agreed that we need to do surgery soon. He talked to us about all of our concerns and answered all of our questions that he could. I think John and I came away thinking that doing the growing rods this spring is the way to go. We will plan on going up to Madison for the procedure. It’s just nice to go up there, where they understand the respiratory issues of SMA. The surgery itself could be done here, but we feel better with Dr. Schroth managing his care on the respiratory side. I’m still VERY nervous and anxious, but we know that we need to do what is best for Charlie.

John and I went out on Friday to celebrate our 7th Year anniversary. We had a nice long dinner at a place we’ve never been before. It was a great night and nice to have so much daddy and mommy time together.

Saturday was supposed to be Lily’s last soccer game, but it was canceled due to wet fields. We had her end of season soccer party though and that was nice. Sunday, Lily and I went to her friend Tara’s birthday party at a place we’ve never been before – Tunnel Town. She had a ton of fun. After that the whole family went out to dinner with one of Lily’s friends and her parents. It was a fun day.

Monday, I had to take Lily to her 5-year check up. She’s doing great. Still in the 90th percentile for height. She’s going to be tall :0) She wanted me to eat lunch with her at school, and then it was home to play with Charlie before his nap. The kids carved their pumpkins after dinner. They really had fun.

Tuesday, both kids took their costumes to school for their parties. When we got to PS with Charlie, all the kids were in their costumes, so Nurse Lori and I got Charlie dressed. He looked so adorable! He finally decided on Woody. It was a good choice. It was a fun morning with Charlie and his classmates. Charlie really enjoyed the pumpkin bowling and the costume parade! He was so busy saying hi to everyone in every classroom we visited. After Charlie got home from school, I ran to Lily’s school to help set up her room for her party. We got to see their costume parade and then it was back to her classroom for games, treats and stories. I was pooped by the time we got home from school. We rested up for an hour and then got re-dressed up to go to our neighbor’s house for dinner before Trick or Treating. Lily and Charlie love being over with Jackson and Ella. Ella and Lily were taking turns kissing Charlie. He was having a blast. He loves Ella!

We then went home and bundled up to go trick or treating. Charlie wanted to drive Blue. It was so cute. We went to our next door neighbors house – they had it decorated pretty scary! Charlie was so scared he didn’t want to go up to the door. It was too funny. We only did another three houses before he said he’d had enough and wanted to go home. So Charlie and I headed home to answer the door while Lily and Daddy went on trick or treating. Charlie had so much more fun answering the door with me ;0)

I’ll be posting all the fun photos from our pumpkin carving to the Halloween Parties soon! Hope you all had a Happy Halloween too!

Monday, October 23, 2006 2:11 PM CDT

I’m very late getting an update out. We had a great week. Monday, Lily didn’t have school because of Columbus Day, so we took Lily, her friend Julia (Charlie’s crush), and Charlie to the pumpkin patch. It was cold and rainy so we had the place to ourselves. They had lots of animals around and the kids got to see baby pigs that were born the night before. They also got to see a huge hog, a cow and a draft horse. It was a fun trip even before we went out to the field to pick out pumpkins. It was soo muddy though. Charlie’s wheels were caked in mud and so were our jeans. But the kids had a good time so it was worth it. It even held out and didn’t rain anymore while we were there.

The rest of the week was pretty uneventful. Charlie made it to school both Tuesday and Thursday. John left Friday to go to MN for a wedding, so it was just the kids and me over the weekend. Lily had a great time on Saturday. We had a cooking class here at the house with four of her friends. Charlie enjoyed hanging out with so many pretty girls and their moms until it was time for his nap. Sunday, Lily, Grandma and I went to see the movie Flika – it was good, but Lily started bawling during the sad parts. We went out to dinner that evening with my brother Robert and his family. Charlie loves playing with his cousin Taylor.

Today was Charlie’s field trip with school to another pumpkin patch. We had a blast. Charlie loves being with his schoolmates and doing all the things that they do. We got to ride a tractor out to the pumpkin patch. They were able to get Charlie’s manual chair on it. It was so funny. Charlie kept saying that he was having so much fun! We rode out to the patch and then Daddy carried him around to pick out the perfect pumpkin! After that it was back to the main area for lunch. There were so many things to do out at the farm. The kids ran through a Haunted Barn and Charlie got to do it to in Daddy’s arms. He was so funny pretending to be scared. The best part was the slide area. Charlie got to ride down on either Daddy’s or my lap. He kept saying again and again. John and I were so tired carrying him up the hill and down the slide. We got some fun videos and photos from the event! After many slide trips, we went to the pumpkin cannon. They load up huge pumpkins into this “canon” and blow them out. Man, the pumpkins fly! Charlie loved it and kept asking to do it again. He got to push the button to fling it! There was also a smaller gourd cannon where you could aim at targets in the pond. Charlie asked to do that over and over again too. We headed home after that. It was such a fun day!

I’ll try to post photos and videos soon. I’m so behind on updating photos. We just got some cute ones from Aunt Kara from the Walk too. I’ll update more later.

Sunday, October 15, 2006 11:40 AM CDT

Today is a cold and rainy day. But we need the rain, so we’ll take it. Lily spent the night last night with Grandma so it’s just John, Charlie and me right now. Charlie is being very demanding. He wants to read books, but he is picky and gets mad if we try to read one he doesn’t want to read. He is getting so opinionated and wants to be entertained all the time. Gotta love him.

We had a mellow week for the most part. Last Monday, Lily didn’t have school. So we all headed out to the mall to try to get Charlie his Halloween costume and some outfits for Charlie and Lily to wear for Christmas card photos. Charlie is so funny. For months, he’s said that he wants to be Buzz Lightyear from Toy Story. I bought a costume on line from Disneystore.com. Then he said he wanted to be Woody. So I had to return the costume so we wouldn’t have to pay for it (it had to be postmarked by October 13). Anyway, we get to the Disney Store in the mall and he says he wants to be Buzz not Woody! I didn’t want to buy it at the store since he can’t make up his mind. Lately he is even saying he wants to be Jessie -- the cowgirl from Toy Story. I went on line the other day and they were having a big sale. I was able to get both costumes for less than I paid for the original one. So he can have it either way and also have some dress up clothes just like Lily.

Tuesday, Charlie went to school and then I had to take both kids to the doctor for their flu shots. Lily also had to get her Tetanus and MMR shot. She was NOT happy. I felt so badly for her. They were both really brave though. We went with nurse Rachel and stopped for ice cream on the way home. It was nurse Rachel’s birthday as well as a good way to make the kids feel better after their shots.

It was very strange, Wednesday we got a call from the nursing agency and was told that Rachel isn’t coming back. We are very sad and don’t know why. She didn’t mention anything on Tuesday about leaving us. She’s been with us for over a year and we all love her. We will miss her. Nurse Lori is going to come both Tuesday and Thursday, so it will be fine. We love Nurse Lori as well, but will miss Rachel.

We didn’t take Charlie to school on Thursday; it was very cold and damp. He isn’t sick, but just hasn’t been totally himself. We figured it was better to play it safe and not wear him out. Lily’s been fighting a cold for a week so we’re trying to keep Charlie healthy.

Saturday was gorgeous! We went to Lily’s soccer game and Charlie had so much fun playing with Chyna (Lily’s friend, Julia’s puppy). We went to church later that afternoon and then dropped John off to watch the Huskers game while Grandma, Charlie, Lily and I went to dinner. It was a fun day.

We are going to hang low today and stay out of the cold. We were hoping to go to the pumpkin patch tomorrow since Lily doesn’t have school again. But they are saying more rain! Have a GREAT week and we’ll update later.

Sunday, October 8, 2006 6:16 PM CDT

We had another fun packed week. Tuesday, we took Blue to school so that Charlie could have his PS photo in his power chair. It was too fun watching him buzz around with his friends and then sit up so proud and tall for his photo. It was early dismissal day so the morning went quickly. We have been taking Blue with us more and more again since Charlie is back in the swing of driving. On Wednesday, John and I took Charlie to John’s favorite breakfast place. We had to meet our friend, Paul, to pick up the shirts we had done for “Charlie’s Crew”. A lot of the people who are walking on Saturday will be wearing a shirt with Charlie on the front. Our dear friend MJ, who also has SMA, designed it. Then, we took Blue to therapy and he had fun showing off to all the people in the building and on the elevator. He can’t help but say “hi” and smile at everyone. It was also an exciting day because an article about Charlie came out in the Kansas City Star. You can check it out here (as long as it’s up I guess) http://www.kansascity.com/mld/kansascity/news/local/states/kansas/counties/
johnson_county/cities_neighborhoods/
leawood/15669461.htm

Thursday was another day of PS and being busy getting ready for company. I went over to pick up the race/walk packets for all our family and friends and delivered most of those too. Charlie, Lily and I drove around after dinner to deliver the shirts to our neighbors.

Friday, Charlie sounded a little scratchy. I was so worried that he might be coming down with something, so we hung low at home while John ran errands to get ready for our company. A lot of John’s family came in -- his dad, his brother in law and his two kids, his sister and her kid, his other sister and his cousin’s wife and his kid were all coming in for the race and to stay at our house. So, we were planning on a full house! Lily and I had her first Girl Scout’s Daisy meeting after school and then piano lessons. So it was a crazy day. Charlie woke up from his nap seeming fine. The first of our guests arrived around 6:30 with the last ones filing in by 1:30 am!

Saturday, we had to be up bright and early to be ready for the Walk & Roll. We herded everyone out the door by 7 a.m. to head down to the event. It was sooo much fun. We finally figured out how to get Charlie’s chair in HIGH speed. We made our way to the starting place for the walk/run and ran into so many of “Charlie’s Crew” there. It was too cool to see a sea of Charlie shirts everywhere. I wish I had been able to get everyone together for a photo! The runners started first, and then those of us who were walking and rolling started next. Charlie’s chair was so fast that I had to speed walk and jog to keep up. My cousin’s daughter Laila was a huge help in keeping Charlie on the right track. Beautiful older women always have the power to sway Charlie! LOL. All of his cousins and his sister were running around trying to keep up too. We finished the walk in record time for us. Every year, with all the young kids we tend to come in very slow – not this year! At the end of the race, we hung out and visited with a ton of friends and family. Then it was time for the Kids Dash. Lily ran a fast race and Charlie drove Blue so well. He was one of the youngest ones there in power! Then Charlie got his photo taken with Constance from Extreme Home Make-over and we tried to get as many of Charlie’s Crew together for a photo. Charlie couldn’t have smiled more – although for photos he was getting tired of all of them and pouted a lot instead of smiling! There was a cool petting zoo with exotic animals that we went to see after that. The kids fed a baby camel, a mommy Kangaroo, a huge turtle, some antelope as well as a porcupine, monkey, llama and sheep. Then it was time to head home. We walked back by the race and they were announcing the winners of each age bracket. John placed THIRD in his age group and got a metal. We are so proud of him. We also ran into a young boy and his mother who John use to work with. Her son started running in races for Charlie’s first Walk and Roll and has been doing it ever since. He gave Charlie his medal that he won this year. It was very touching and special! Thanks Nathan!

We were all pooped when we got home. But the kids had enough energy to play out side. We played games of duck duck goose and jumped on the neighbor’s trampoline. We lucked out and had another weekend of beautiful weather. Charlie and Lily had so much fun with 4 cousins to play with. Charlie didn’t want to miss the fun and kept begging not to nap, but he crashed into a deep sleep almost before I left his room. The kids still had plenty of energy to play after his nap until bedtime. It was a fun, exhausting day. I think everyone went to bed early.

Most of the family had to leave early today to either catch planes or start their long drives home. It seems so quiet in the house right now LOL

I just have to say that we have been so touched by SO many people for this year’s walk. We had several kids come over the house with all their money from their piggy banks to give to Charlie for the walk. We had a wonderful neighbor make us an egg dish and bought donuts so we could feed all our guests before the race. We had another neighbor bring us a ton of towels so all our guests could shower with nice towels instead of my pot luck sets! Another little boy from Lily’s school had been collecting money for charity and when he read the story about Charlie he wanted it to go to FSMA. We had several neighbors stop by with donations and I could go on and on. We are truly blessed by so many wonderful people in our lives. Sorry for the long update. I’ll hopefully update the photo page soon!

Monday, October 2, 2006 7:13 PM CDT

We had another fun and busy week here in the Sykora household. John and Lily were gone Saturday through Monday so Charlie and I hung out a lot with Grandma. We played outside a lot driving Blue and enjoying the beautiful Fall weather.

Charlie made it to school both days (Tuesday and Thursday) again this week. He has so much fun and is making so many friends. The AT team met with us and told us that they don’t think that Charlie needs any assistive tech devices at this point. I agree. He is speaking so well and his enunciation is age appropriate. Who knows what the future might hold, but he’s doing really well right now. I’m sure we’ll re-evaluate as time goes on and his needs change.

Friday night, Lily had her friend Julia spend the night. Charlie adores Julia and it’s so cute to hear him call out to her. We went to our typical Friday night restaurant – Macaroni Grill. They are so wonderful to us there. We have the same waitress (Gary) every time we go and they put us at a table big enough for Charlie to lay on it while we eat. He loves being on the table during our meals. The kids had fun coloring and playing until the food came. Then we ate and it was home to bed!

Saturday we had a very busy day. Julia and Lily had a soccer game at 9:30. Charlie loves cheering from the sidelines. Then it was home for a quick break and then off to Pump It Up for Charlie’s first birthday party where it was a friend of HIS and not a family friend. It was a party for twin girls from PS ~ Madeleine and Olivia. Charlie had so much fun. Daddy and I got a big workout jumping around on all the bouncers. I’ll be sure to post photos. Charlie asked for “bouncy, bouncy, bouncy” over and over again. I even climbed up a big slide and we went down it. He wasn’t too sure about that onen. But the bouncers he couldn’t get enough of. After that it was home for a nap. I needed one too.

Sunday we stayed pretty mellow, Lily went with a friend to the Chiefs game. She had fun, but thought that it was kinda scary since it was so loud! LOL The weather was beautiful – we are having a heat wave for October. Charlie and I took Blue outside and of course, went to visit Daisy and Kathi as well as Linda. He loves to visit them. After his nap, we went out to dinner with my mom and brother and a few of his friends. Once again, with Charlie on the table ~ the center of attention!

Today, we again had beautiful weather ~much hotter than normal, almost too hot. The morning was great though. Charlie, John and I went to Deanna Rose (the farmstead). Charlie drove Blue and had a blast. He wasn’t even interested in seeing the animals this time, it was all about driving Blue through the trails looking at flowers and plants. He spent so much time driving through the garden, round and round the brick walkway looking at all the plants. I would love to have something like that in our back yard! One of our SMA friends asked for a “wish garden” for his Make A Wish. They are building a pathway that winds through plants and trees and flowers in his back yard. They just started it! I know Charlie would love to have that in his back yard. So that’s our update for now. Charlie has school tomorrow and his school pictures. We also have a very busy week/weekend coming up. We have 10 people coming in town and they are all staying with us (it’s John’s sisters, some of their families as well as his Dad). They are coming in for the Walk this weekend. Hope all is well. I’m going to post photos and videos soon on his www.oursmaangels.com/charlie site.

Saturday, September 23, 2006 12:06 AM CDT

We had another fun week. On Monday, John and I took Charlie to the zoo. He’s been enjoying driving Blue again, so we brought it with us. Charlie loved seeing all the animals, but he was most impressed with the colorful animal mural on the wall by the monkeys. Funny that we drive all the way to the zoo and he’s the most excited by the inanimate animals on the wall. Charlie had a blast on the train. Although we waited for about 25 minutes for a 5 minute ride! We got on early and more and more people kept rambling up to get on. We stayed for about 2 ½ hours ~ it was a gorgeous day.

Tuesday, Charlie had school. His friend Milcah pushed him all over the playground again as well as to the bathroom and to the library for book buddy day. Charlie’s book buddies from last week asked to have him again this week (I need to try to remember their names). He’s making loads of new friends and got invited to his first birthday party! It’s for the twin girls in his class, Olivia and Madeleine. They are having their party at Bump City – so Charlie can play on the jumpers! Yeah!

Wednesday was a busy day. John and I took Charlie to his school for gym class. It was fun to see him drive his power chair with his friends. Unfortunately class was in the cafeteria and not the gym as normal. But it was still a fun, quick visit. We will try to make it up for gym class with Charlie when we can. He has fun driving Blue with his friends. Lily and John had soccer practice after school and then it was home for some board games and dinner before bed.

Thursday, I took Charlie to school again. We met with the school’s AT staff to try out a new assitive tech device. Charlie loved it. He kept asking to try more and more pages. It will be interesting to see how they fix it so he can use it. John came up and stayed with Charlie and Nurse Lori so I could go to Lily’s school to meet her for lunch. She loves having her daddy or I meet her occasionally for lunch. After school I picked her and her friend Lauren up for a playdate here. Charlie loves it when Lily has pretty girls over to play!

Friday, Charlie and I went to Deanna Rose for a short trip. We are having a problem with getting his headrest comfortable so he wanted to come home after only 45 minutes. But that was plenty of time to feed the goats and cruise around and see all the “people”. Charlie calls everyone “people”. I want to see “the people.” It cracks me up!

Lily and John are heading up to Minnesota to visit his family today after Lily’s soccer game. John’s dad asked John up to go to the Viking’s Game. Lily is going along for the ride and to get some more fun time with her cousins and grandma. Charlie and I are staying home because it’s very wet and cool here. It would be too muddy for the kid kart! My mom is going to hang out with us this weekend, so Charlie will have some fun too.

I’m so amazed and touched by our family and friends support. I’ve been collecting donations for the upcoming FSMA walk here in KC. We set a goal of raising $2,000 and it’s already been surpassed! Thank you for all your love and support! You can check out our on-line page at www.firstgiving.com/forcharlie to see our progress. You can also join us for the walk! It’s Saturday, October 7. For information, you can visit www.roelandpark.net. Hope to see you there! A good friend, MJ who also has SMA, made up some t-shirts for “Charlie’s Crew” ~ those of us who are walking. Check them out at https://www.cafepress.com/b4sma.75496450. Thanks and God Bless!

Sunday, September 17, 2006 10:50 PM CDT

We’ve had such a fun weekend. On Friday morning, Charlie and I went out to drive Blue. The weather has been so nice here lately – finally some nice fall days to enjoy. He wanted to go visit some of our neighbors. So we had to go up to several houses, ring the doorbell and say hi. He always wants to visit our next-door neighbor Linda. And then he likes to go down the street to visit Kathy. His visits are always short, just a hello and off he goes to the next house. He stayed the longest at Kathy’s because he loves their little dog, Daisy. Daisy sat on his lap and gave him tons of kisses. Charlie just smiles and smiles. One of these days, we are going to kidnap Daisy for the weekend!

On Friday night, we went to Lily’s school carnival. Lily took her friend Julia (who just happens to be Charlie’s crush) with us. The kids had fun playing on the bouncer. John took Charlie in with them, so they all had a blast. Then they ran around getting their faces painted, playing carnival games and eating great big suckers. Charlie loves getting to participate with Lily in all the fun. By the end of the evening, everyone was worn out and ready to go home.

On Saturday, we didn’t do much other than go to Lily’s soccer game. During half time, John picked up Charlie and had him "kicking: the ball around. I have the cutest short video of them playing soccer. After that, Charlie enjoyed lying on the sidelines and cheering for Lily and her friends. Then it was home for Charlie’s nap. We didn’t do much for the rest of the day.

Today, we had my mom, my brother and his family over to watch the Chief’s game and to eat pizza. Lily and Charlie love playing with their cousins, Taylor, Sidney and Bobby. After dinner, we took the kids outside so Charlie could drive Blue. They all had so much fun chasing each other and running around. It melts my heart watching Charlie get to run around with his cousins. Having Blue enables him to participate and keep up and enjoy playing like the other kids. I really wish we did this more often with my nieces and nephews. I need to make it a priority. Of course now, it won’t be long before it’s too cold to play for long outside.

So that’s our fun weekend. We don’t have any big plans for the week coming up, but if the weather is really nice, I’ll try to take Charlie to the zoo or at least Deanna Rose while Lily is in school. Hope all is well with everyone.

Thursday, September 14, 2006 8:12 PM CDT

Grandma and Grandpa Sykora were here to visit last weekend. They got here on Saturday night and stayed until Wednesday morning. It was a fun visit. While they were here, we painted Lily’s bedroom. She wanted pink and purple so we did every other wall. It looks very cute and she is so happy with it. The whole time we were painting, Charlie was requesting yellow in his room. So maybe that will be next!

While Grandma and Grandpa were here we went out to Cabella’s to check out the aquarium and all the stuffed (live) animals. The kids loved it. I’ll post some of the photos, but Charlie was in awe of all the big animals. He kept telling us to look at them – the elephants, the zebras, the lions -- he was definitely enthralled by it all.

Charlie and Lily had so much fun having Grandma and Grandpa at their beck and call. Since Charlie is so into playing on the floor, poor Grandma and Grandpa will probably need a week to recoup from sitting on the floor so much.

Charlie had a great week at school this week. Today, Milcah wanted to push him around on the playground and then every time we went anywhere, she wanted to push him. Charlie thought that was pretty cool. He is making some friends at school and is having so much fun.

The weather has finally gotten cooler, so we went outside with Blue for the first time in a while. Charlie hadn’t been too keen on driving, but the last few days, he seems back into it. We went out to play in the driveway and ended up walking all the way around the block. He didn’t want to come in.

That’s about it for the week. We have Lily’s school carnival tomorrow night. Last year, the kids had so much fun. Then we have Lily’s soccer game on Saturday. Charlie has a crush on one of Lily’s friends so he enjoys watching the games! That’s about it. I’ll post some fun photos from our Cabella’s trip under September on his www.oursmaangels.com/charlie site. Enjoy!

Friday, September 8, 2006 3:22 PM CDT

Here is our update for the week… I went to bed and worried all night on Saturday night. The weather was “iffy” with chances of morning thunderstorms on Sunday – the day of the BIG party! But what a beautiful surprise the day turned out to be. It was perfect weather for the party and Lily and Charlie had so much fun. Before the party started, Daddy, Lily and Charlie went through the inflatable obstacle course. Charlie had a BLAST and wanted Daddy to do it again. It was so hard on Daddy, but he was such a great sport carrying Charlie through it all. The other kids started to arrive, so we had to tell Charlie that we would have to wait to try again. Lulu Bell the Clown was there by then, so Charlie went to get his hands painted. He had a sun painted on one hand and Elmo on the other. Then he went over to his Cousin Taylor to have Spiderman tattoos put ALL over his face and arms. He was having a blast. As for Lily, we hardly saw her once the party started. She was running and playing all over the place. We had horse rides going for about an hour and both Lily and Charlie really enjoyed that. Charlie rode for about 30 feet and then had enough. I’m so bummed that he isn’t smiling in any of the photos, because he was having a blast. We kept asking for him to come down and he’d say “no!” He had 6 new friends from his preschool there. They were so sweet. All and all we had about 60 + people there. It was a great day. I have too many photos to share :0) But I’ll post as many as I can. Charlie was so pooped that he took such a long nap when we got home. Lily went home with Grandma and her cousins and they all went to the petting zoo. Lily then had a sleepover with Grandma – so thankfully it was Labor Day Monday so she could recover from her full day of fun!

Charlie woke up Monday wanting to go to school! He was so sad that it was closed. I’m so happy that he loves school. So far, I’ve gone with him along with his nurse, but I am hoping to leave him with just his nurse so he can have some independence from Mommy always being there. School on Tuesday was great. He got to blow paint bubbles and make a painting. They he played on the floor with several of the boys. They had library time where 4th graders help them pick out a book to take home and they read to him. He thought that was pretty cool. It was his job to feed the class gerbil, Seek. It was a great day. He had a blast and was so sad when the day ended. The kids are so wonderful and considerate of Charlie. It’s so fun!

I was feeling pretty darn sick on Wednesday – my allergies are really killing me this week. I had a pretty bad cough, so I avoided being around Charlie too much. I was worried that it might not just be allergies. It’s a good thing that John is home to help take care of him. I was wearing a mask whenever I had to be around Charlie. I hope that it’s nothing! We hung mostly around the house. Lily and Daddy had soccer practice after school. Then we all went outside to swing after dinner before we had to start getting ready for bed. Charlie and Lily love swinging and playing chase in the back yard. Chase means Daddy carrying Charlie around running like a mad man while Lily and I chase them. It is so much fun.

Thursday was school again for Charlie. We had to be there early to meet with the Aug/Com team. They want to try to figure out what device might work well for Charlie. Even though he is such a great talker, he can be hard to understand if you don’t know him because of his enunciation. And that won’t get any better. They are looking at switches and positioning as well. Charlie was too funny. He loves being the center of attention and having three women give him their full attention had Charlie at his best! He was showing them how well he could work switches with a walking/oinking pig toy. It was too cute. They were with him for more than an hour. Then it was back to class. Charlie’s job was to be line leader and he was so excited. He led them all to recess and then to music. He so enjoyed playing all the instruments and singing in music class – he is so like Lily in his musical interests. After music it was back to the classroom for center time. Charlie chose to play bricks with several other kids. They’d build towers that Charlie would knock over – or stack them like dominos for him to push. It’s the whole reason we want him in school – to have these interactions with kids. He had so much fun. At the end of class, the teacher asks each kid several questions to send home in a report to their parents. It made my heart melt when one of the boys at his table answered the question – what made you happy today with “having Charlie here at school.” How cool is that!

Today, John left for a boys weekend. He went up to Notre Dame for the football game. I know he’ll have a great time. Charlie, Grandma and I went to Deanna Rose (the petting zoo/farmstead) for the morning and then Charlie and I had to go to an orthodics appointment to pick up his new BRIGHT yellow TLSO. After the fitting, it was home to bed. I went to meet Lily at school so I could take her to her first piano lesson. It’s only ½ hour and it went well. She said she liked it and so we’ll keep going and see how it goes! I know Charlie would love it if she started playing the piano. The kids are all in bed getting ready for a busy day tomorrow. Lily’s got her first soccer game tomorrow and then their Grandparents (John’s parents) are coming in for a visit. I’ll update later. Keep a look out for photos from this past weekend’s party. I have a ton to post!

Friday, September 8, 2006 9:24 PM CDT

Saturday, September 2, 2006 9:16 PM CDT

We’ve had another great week. Charlie made it to his second day of preschool and had a blast. He loves it so much that it makes my heart melt. I took him on Thursday morning with his nurse Lori. We got there in time for circle time. He so enjoys being including in the circle. I have to stand up and hold him while we say the Pledge of Allegiance then it is back to the floor for the rest of circle time. After that, Charlie was in the group who needed to make pictures out of pre-cut shapes. He wanted to lie on the table to participate. So he did that and “sat” at a table with two other kids. He wanted to make Dora and Dora’s house. He really did great with the glue stick and the shapes. It was fun. After that, it was outside for play time. It was a beautiful day. I ran around the playground pushing him. Then up and down the playset. It’s great because it has a lot of ramps and assess for him to really feel like he’s playing with the kids. After that it was inside for music class. It was a quick 10-minute class, but probably Charlie’s favorite thing! He wanted on the floor and then he wanted me to hold him to dance with the other kids. It was so much fun. John came at that time, so that I could leave to go meet Lily at her school for her birthday lunch!

I got to Lily’s school early so I sat in her class and visited with her awesome teacher – Mrs. Beatty. It was fun watching Lily interact and do her school stuff. Then it was off to lunch. In Kindergarten, they get their own trays and pick out their own lunch. Lily does a great job of eating healthy for the most part. She does have dessert of course :0) Like father like daughter! I sat with her classmates and ate my lunch. Lily was called to the front of the cafeteria so the whole lunchroom could sing Happy Birthday. She wouldn’t go up without me. She is so shy that she hardly looked up from the floor. That was a hard thing for Lily. I hope she enjoyed it a little bit. I had to leave after lunch, but when I picked her up after school, I met her with some princess balloons. She wanted Grandma over for Pizza so we had an easy dinner and then she tore into all her presents. She is too funny. Charlie kept asking where his were :0)

We are having their big celebrations tomorrow. More than 80 people/kids are coming. It’s going to be a zoo. I just pray the weather holds out because it’s an outside party with no contingency for rain. We are having it outside the clubhouse at the barn. There will be horse rides, face painting, balloon animals and an inflatable obstacle course. Crazy, I know. Lily and Charlie are so excited for it. They’ll have about 35 friends there to help them celebrate. I hope John and I survive though :0)

Will post photos soon of Lily’s bday and then of the big party tomorrow. Thanks for all the birthday wishes for my kiddos – they’ve had a great time so far.

Saturday, August 26, 2006 7:21 PM CDT

Well, we’ve had a crazy week. Charlie has his first bad cold. He’s been stuck in his room basically since his birthday. The poor guy’s been doing his treatment routine every four hours and he’s getting so tired of being suctioned that he’s clinching his jaws shut. I don’t blame him. But we have been having fun playing some of his new games that he got for his birthday. It’s too fun to watch him play Rex-a-Round. It’s a dinosaur game where you try to flip little eggs into the dinosaur’s mouth. The most awesome thing is that he can do it all by himself. He is also very good at telling me when to flip my eggs to get it in. The next game that we’ve been playing a lot is Lucky Ducks. He loves picking up the ducks as they go round and round to see if he can get all his color or shapes.

Today is the first day in awhile that he seems to be doing better. He’s finally out of his room and on the floor in the living room watching a movie with Lily before bed. Hopefully, the cold is almost over. I hope he gets to go to school this week since he and Lily have their joint birthday party on next Sunday and we invited all his new school friends. It would be nice if they could meet him before the party!

Lily enjoyed her first full week of school. She said she really likes her teacher Mrs. Beatty. I’m so glad because we loved her PK teacher last year so it was a hard act to follow. Mrs. Beatty is wonderful and we know Lily will have a great year with her.

Well, that is our update for now. Say a few prayers that Charlie continues to get better. This week will be another BIG week with Lily’s FIFTH birthday coming up!

Hugs to all.

Wednesday, August 23, 2006 5:35 PM CDT

First, thank you for all the wonderful birthday wishes. Charlie was inundated by emails and phone messages and it made his day. He loved singing along with every message. Happy Birthday is one of his favorite songs to sing.

He had a great Birthday overall. He is fighting something in his lungs, so he endured treatments all day long, but he kept his happy smile and attitude the whole time. He is a bugger though. He’s into clinching his mouth shut when he doesn’t want to be suctioned. It’s a fight, but we win every time.

We had Grandma over for dinner and then our neighbors and their twins over for cupcakes and singing. Charlie loves Ella and Jackson so we knew he’d be excited to have them share a little of his birthday. After they left, Charlie opened all his presents. He got so many from everyone! He is so excited to play with all his new toys.

This morning, he’s still pretty gunky in his chest. He has been playing in his bed and watching movies on his new DVD player he got from Grandma. He has a low-grade fever, so prayers please that he doesn’t have the start of something big. His SATs are still great so I am not sure what’s going on. We started him on antibiotics last night. More presents are pouring in – so thank you to everyone who is thinking of Charlie on his special Third birthday. We’ve come so far from his first year when we were told odds were against him making it to 2! And here we are at 3 and he is doing so wonderfully!

I want to give you a recap on the weekend – Saturday Lily went to a birthday party while Charlie and Daddy went to the airport to pick up the Baumer family - -friends of ours from California. John, Charlie’s godfather, his wife Molly and two of their three kids, Maxwell and Delaney, all came for a long weekend. After Lily’s birthday party, she and I went out to meet the others at the Great Wolf Lodge. It is an indoor water park and so much fun. Charlie played in the water with Daddy and even went down a mini waterslide. He wanted to go again, but Daddy got in trouble by the lifeguard who told him it was only for kids. It was a fun afternoon. After getting cleaned up, the whole crew went to dinner at Ted’s Montana Grill. Charlie enjoyed being on the table while we all ate. Then it was home to bed for Charlie and me. The others were staying the night at the Lodge. It was a long day with no nap for Charlie so he was tired.

Charlie woke up Sunday pretty gunky. We had to do more than an hour of treatments before he felt better. Then it was back to the Lodge to pick up the others – they spent the morning playing at the water park and had a great time. Lily was so brave that she went down all the big slides. We got home and the kids all played. Charlie really took to Maxwell – he spent a lot of time playing trains with Charlie as well as other games. Lily and Delaney were inseparable. It was a fun day.

Monday, Lily had to go to school – she was so sad that Maxwell and Delaney would be there all day and she had to be at school. Charlie was gunky again, so we did a lot of treatments in the morning. Maxwell was wonderful. He played on the bed with Charlie during his nebs and treatments. Maxwell was pretending with Charlie’s stuffed Cookie Monster and his Elmo. Charlie kept feeding Cookie pretend cookies. He was having a ball. Maxwell is such a great kid and very sensitive and caring. Charlie thinks Maxwell is pretty darn cool! Later that morning, we decided to take Maxwell, Delaney and Charlie to the Deanna Rose Farmstead. We went back and forth on taking Charlie, but he wanted to go so we gave it a try. When we got to the farmstead (about a 10-15 minute drive), Charlie asked to lie on the floor of the van to be suctioned. Very not like him. We got a bunch of stuff out. He still wanted to go into the farmstead, so we took him in. About 10 minutes later, we had to put him on the ground and suction some more. After that, he was fine for the rest of the early afternoon. We fed the goats, fished and saw all the other animals, and then Daddy and I took Charlie home for a nap. I was worried to drive on my own with Charlie. Grace’s death is still heavy on our minds and our hearts. It makes me nervous to be alone in the car with Charlie right now with all his gunkiness. After Charlie was down, I ran to pick up Lily from school. She got home and was gone in a flash – downstairs to play with Delaney and Maxwell. The kids had a great time playing. Lily didn’t want to go to bed at 8, but she had school again . . .

Tuesday was Charlie’s Birthday! We were supposed to start PS with him. His nurse Rachel and I were going to take him. I had made cupcakes for his class and everything. But Charlie woke up gunky again. So we did our treatments and he seemed fine. Lily was upset and didn’t want to go to school. She wanted to say good-bye to Delaney, but they were still sleeping. Lily and John left to go to school and I took Charlie downstairs. I was still planning on taking Charlie to school. He didn’t have a fever and seemed like he’d be well enough to go for a little while. I brought him downstairs and was packing up the car, when Charlie sounded gunky again and asked to cough/cough and suction. Back upstairs we went. I had John call the school and tell them we weren’t coming. Maxwell came into Charlie’s room and played with him again while we did our treatments. It was so much better for Charlie to have someone making him laugh while we were doing nebs and CPT. A little later, John had to leave to take the Baumers to the airport so Nurse Rachel and I took turns working on Charlie. His Stats were fine, it was just the gunk we could feel/hear in his chest.

Later that morning, Miss Linn stopped by for a visit and to bring Charlie and Lily presents for their birthdays. She is the nurse who has been giving Charlie his RSV shots every year for the last three winters. She played with Charlie for a long time and brought him a whole bunch of fun Spiderman stuff. Charlie was having fun. He was so excited that he wasn’t getting any shots – since that is what he associates Miss Linn with :0) So funny that he remembers that! Anyway, she listened to his lungs and said she hears a “rub” – He definitely has something up with his lungs and we need to get it fixed. We called the doctor in Madison and she prescribed antibiotics. They said if he isn’t significantly better in a few days to call them back. Hopefully, he’ll be better soon!

Thanks again for everything - -he so enjoyed his birthday and it is so wonderful to know he’s so loved.

Friday, August 18, 2006 9:36 PM CDT

Our hearts are breaking; another beautiful little girl went to join the other SMA Angels in Heaven last night. Grace Dyan Coggins will be in our hearts forever. Please keep her family in your prayers. . .

Thursday, August 17, 2006
Lily is in Kindergarten!! Today was our little princesses first day of school. I just can’t believe it. Where has time gone? Charlie starts PS soon too.. Oh my!

Sunday August 12, 2006
We had a great day today. We went with some friends, Kristin and her two kids Molly and Morgan, to the Butterfly Festival at Powell Gardens. There were so many beautiful flowers and butterflies. We got to touch both a caterpillar and a butterfly. And we got to do a ton of fun arts and crafts. I’ll post photos soon, but it will be hard to decide which ones because I took so many. Charlie and Lily had a blast.

Saturday, August 12, 2006 9:23 PM CDT

We’ve had another fun and busy week. It’s amazing that summer is almost over and school will start soon!

On Thursday, Lily’s school friend, August, had a birthday party at a laser tag place. They invited Charlie too. It was so much fun watching the kids decked out and trying to figure out the true meaning of the game (other than running around in the cool neon lights and shooting each other with no consequence). Charlie thought it was too loud so he didn’t want to stay in the room too long. He and Daddy went back to the party room where a whole bunch of other kids were hanging out. It was a fun afternoon.

Friday, we took Lily, Charlie and their friend Ty to see The Barnyard. The kids really enjoyed it. We then went to Burger King and Lily and Ty played on the indoor playground while Charlie and Daddy tried to participate. There wasn’t much they could do, but they had a good time watching. Then it was home to nap. Ty is so wonderful to Charlie and included him in a lot of the play during dinner. Charlie helped eat Lily’s ice cream to top off the evening. It’s funny how he won’t try to eat much, but melty ice cream is right up his alley.

Today was Lily’s Back to School Kindergarten Ice Cream party. Charlie again enjoyed a ton of tastes of ice cream – wanting “more, more” :0) It was great fun but VERY humid. Lily met some new girls who will join Barstow (her school) for Kindergarten. It was sad to realize how many of her classmates from last year will go to different teachers as there are three different teachers this year.

Tonight was the National SMA Candle Lighting Ceremony. We lit our candle at 8 p.m. and joined all of our friends and families who also participated across the country. It was neat to think of all the candles glowing to raise awareness and honor the SMA kids in Heaven as well the ones still living.

We are looking forward to next week to meet with Charlie’s new teacher and try to finalize the plans to send Charlie to school. We are thinking that we will send him two mornings a week (Tuesday and Thursday) and see how it goes. He will have one of his two nurses with him (as well as me). We will take it day by day, but he’s so excited to go. He starts on August 22 – his Third birthday!!! I hope to bring some treats to make it a really special day.

Another big change will start on Thursday when Lily enters Kindergarten! I can’t believe she’ll be going to school five days a week! Where does the time go. She isn’t my baby anymore.

A little update on Charlie – he is still doing great in the GI area. He’s still gaining weight so we are very hopeful that we’ve fixed it so he won’t have his GI problems anymore.

Hugs and take care!

Saturday, August 5, 2006 7:48 PM CDT

We’ve had a quiet week this week. We’ve been trying to get back into our routines. John left on Thursday morning for a 4-day golf trip to Omaha, so the kids and I have been hanging out and trying to avoid the heat. It was pretty nice until yesterday and then the heat moved back in. Today, we went to visit our friends Tracy and Brian Frank and their two kids Will and Wes. They recently moved to a three acre place way out in the boonies from here :0) I loaded up the kids and headed South. The Franks have a beautiful new home and barn. We got there and Lily and the boys immediately disappeared. They started playing hide and seek so Charlie and I joined in. Then we played a little game of Candy Land. After that, we went out to visit the horse Dallas and pony Hershey in the barn. Charlie and Lily love feeding them. Then Charlie went on an antique tractor ride with Brian while Lily and Will enjoyed cruising around in his toy tractor. It was a fun ending to our visit. We will definitely have to visit again soon. I’ll post photos so check out August :0) On a side note, Charlie’s tummy has been really good still. I think he’s gained back about 1 ½ pounds already! I hope we’ve found the cure! Only 17 days until Charlie is THREE!!! Yippee!! And then nine days later, Lily will be FIVE.

Sunday, July 30, 2006 10:56 PM CDT

Wow! What a week we just had! We left on Saturday Aug 22 for a weeklong trip with the entire Sykora clan. We had been watching Charlie closely for a few days because he’d had a low (very low) grade fever. We didn’t want to push the driving with him, so we stopped three hours short of our destination and stayed at John’s parent’s house. We made it up to the cabins on Sunday. Our cabin worked out great for us. The wonderful people who own the resort, Donna and Dan, built a deck and a ramp on the cabin as well as put in an air conditioner so that Charlie could be comfortable. It was perfect for us. The resort gives antique fire truck rides twice a week. Apparently, we missed it on Saturday, so Donna arranged to have it again on Sunday so that Lily and Charlie wouldn’t miss it! The kids had a great time riding it up the road and back. What a wonderful start to our week.

I actually will try to condense this so it isn’t as long and not go day by day. The kids had such a GREAT time playing all week with their cousins, aunts, uncles and grandma and grandpa. We loved meeting our two newest additions to the family as well – Hannah and Caroline. The kids spent all day playing with each other and doing the fun activities at the resort. They rode ponies every day, had face painting, water games, scavenger hunts, as well as a lot of time playing in the pool. We rented the pontoon boat one day so we could all go out on the water to a beach and swim. The big kids also got to go tubing several days. There were 5 pair of Bald Eagles on the lakes – we saw several and they are amazing! I just LOVE bald eagles. We saw several babies as well – with no white heads but flying (I guess Bald Eagles don’t get their white heads until they are five). In the evenings everyone played games like volleyball or soccer (with John running around like crazy carrying Charlie – and did Charlie LOVE it or what), as well as big family dinners. As usual, Charlie was on the table right in the middle of it all :0). The men played golf a few days and we all got a lot of time to relax and just enjoy! We had one big storm that was short but had horrible winds. After the storm there was the MOST beautiful double rainbow. Seeing the rainbows over the beautiful lake was breathtaking. There was NO TV all week! And the kids didn’t even miss it. I know I’m missing a lot, but that’s the basics. I have a ton of photos and I’ll try to post some soon.

Today was second whole day home. It’s so hot here that while John golfed; Charlie, Lily, Grandma and I went to see the movie The Ant Bully. Charlie and Lily loved it – already asking to go again :0) Tomorrow is the start of the week and we’ll just try to get back into the swing of things and our routines. I’m in shock still that Lily and Charlie will start school soon (well, Charlie might start school – but we may keep him home). I’m in bigger shock that soon Charlie will be three and Lily will be five – where does time go.

I think that covers it all. We had a great week and plan on going back to this resort next summer too. God Bless!

Friday, July 14, 2006 2:24 PM CDT

Lily and John are home from their trip to California. They had a great time. Great enough that Lily cried and didn’t want to come home :0) Guess Charlie and I missed them more than they missed us. He hee!

Although I missed my 20th Reunion Party on Friday night, my mom, Charlie and I made it to the picnic on Saturday. It was fun seeing so many people from high school, their spouses and kids. It made up for the fact that I had to miss the big party on Friday. The best part of Saturday’s picnic was when two old friends worked really hard in the hot sun to get Charlie up a blow up “rock wall” and down the slide. Charlie had watched the kids playing on it all day and kept saying “me to”. So Rusty and Jimmy took it upon themselves to make it happen. I tried to get a good photo of it, but I only got shots of their legs or waists LOL. Charlie had so much fun.

That night, I was also able to go out for a little while to a “mini-reunion” of 20 friends or so. Since I was supposed to take it easy all weekend, my mom, Charlie and I didn’t leave the house on Sunday to make up for my adventures out of the house Saturday. Mom and I did hit the toy boxes to finally get rid of some of the massive amounts of toys and books that the kids don’t even play with anymore.

On Tuesday, one of my dearest old high school friends met me for lunch and shopping before she and her boys had to headed back to Miami. It was so wonderful catching up with Kellie. She is the one who we got to see in Florida last year at Easter when we were on vacation.

Charlie had/has been having his GI issues again, so I scheduled an appointment to see the GI nurse practitioner down at the main campus of Children’s Mercy. We had the appointment yesterday morning. I just wanted someone to “see” what goes on when Charlie gets his bad gas and burpies. Although, by the time we were able to get the appointment and get in he’s already much better than his bad times. But it was still good to show her a little of what happens. While we were there we also did the Fecal Elastase (we hope they got enough) and the blood draw for the tests that the GI doctor from UW in Madison wanted us to do. I wonder how long the results will take? We also have the Gastric Emptying scan scheduled for mid-August. It’s amazing how long it takes to get appointments some times.

We heard back from UW Madison about the blood test that Charlie took while there. It shows he doesn’t have enough essential fatty acids in his system. We knew this was a problem because I can get any oil into him – it seems to cause so much more burpies. She’s going to talk to the GI doctor about possibly doing a different mixture of his formula. We’ll see what happens. He is just so sensitive when it comes to his GI stuff.

We are home for one more week before we leave for the Sykora family vacation (with John’s parents, his sisters and their families). This summer is flying by so fast. Hard to believe we are only a month and a few days away from Lily starting Kindergarten and Charlie starting pre-school!! Where does the time go? I’ll stop rambling. Hope all is well – Say a prayer or two that we can figure out what’s causing Charlie’s GI troubles.

God Bless!

Friday, July 7, 2006 4:50 PM CDT

We are home once again. We had a wonderful visit in MN with John’s parents and his sister Mona and her family – Hubby Rick and kids Anna and Sarah.

We arrived at John’s parents late afternoon on Friday. After unloading and taking a breather, we loaded back up to go visit an old High School friend of John’s – Steve Pohlen, his wife Chris and their three kids Olivia, Anna and Theo. They are such a wonderful family, and Lily and Charlie had a GREAT time playing with them from the start. Lily was right about Anna’s age and Charlie was just a little younger than Theo. After a few hours of playing, the kids and parent (sans me as I was video taping and taking photos) played a couple games of “toilet tag” in the front yard. Poor John got quite a work out running around full speed carrying Charlie who yelled, “faster Daddy, faster” LOL!!! We went home tired and ready to put the kids to bed.

Saturday we had a mellow morning. Charlie had fun playing with grandma and grandpa and their toys. Later that day, we met Mona, Rick, Anna and Sarah at their city pool. It was too cool! There was a great waterslide that Lily and the girls kept dragging their dads and Mona down. Charlie got to on a little whale slide, but he wasn’t too sure about that. There was a great zero entry pool that was shallow and huge! Charlie made John sit in the water playing for hours. We stayed for several hours and then home for a nap. Mona and her family came over later for dinner and more playing. It’s so fun watching the kids. Gma and Gpa started a game with Charlie where they set up these plastic horses and knock them over. Mona played with him all night and taught him that it was the “domino affect” – it’s so funny listening to Charlie say that. They played so much. Once again the night ended with ……John carrying Charlie running full blast all over the yard playing ‘tunnel tag’. Charlie loves it, but man, does John work up a sweat. I have video of that one too :0

Sunday was basically a repeat of the same fun that we had Saturday. The kids have so much fun with their cousins. Anna is so GREAT at playing with Charlie and he adores her so much. Lily went home with Sarah and Anna for a sleep over – so she had a blast.

Monday, John and Grandpa played golf and Charlie and I went out to an indoor park/play area to have a playdate with Sophia and Andrea (our friends who we just say in Madison) as well as Donna and her daughters Mary Kate and Alyssa. We met both Andrea and Donna at the first FSMA conference we went to when Charlie was just diagnosed. This was our first time to meet Mary Kate and Alyssa. We had so much fun. The kids drove around together in their power chairs and spent a lot of time playing on the floor together. It was so much fun setting up a ball on a cone and then Charlie would drive Blue into it and “kick” the ball off! He loved it! He also had fun having me help him shoot baskets. After that, we went home. We took John’s parents out to a casual dinner and then called it a night.

Tuesday, we went to Mona and Rick’s for a BBQ! It was wonderful and as usual the kids had a great time. It was a wonderful ending to a fun trip.

Wednesday, we packed up and headed home. We are still trying to play catch up. John and Lily leave tomorrow morning (Saturday) for California to see some friends. They’ll be gone through Tuesday night.

I had to miss my 20th reunion tonight due to some unforeseen medical issues for me. I’m sitting here wondering how everyone is doing. It would have been fun to catch up with some old friends as well as see how much people have changed. I was on the planning committee for the reunion but didn’t do much other than track some people down and work with a vendor on some koozies.

I hope all is well. Charlie has been a little burpier than normal all week. It’s so frustrating that we can’t figure out what’s wrong, but we’re going to keep searching. Say some prayers that he’s better soon. We leave July 22 to head back up to a lake in MN for the entire Sykora family vacation. It will be great to finally meet our two “new” cousins Hannah and Caroline. Lily and John were able to meet them when they went to Boulder, so Charlie and I are jealous and anxious to meet them ourselves. God Bless – Happy belated 4th!

Wednesday, June 28, 2006 9:18 PM CDT

Ok – I have a lot of time to catch up on. So read what you want and ignore the rest :0)

The Saturday before we headed on our trip, we went to Arturo’s birthday party. We could only stay 45 minutes because Lily had another birthday party to go to. We got to meet Jana, Kyle, and Tyler Gundy (sorry I can’t remember Kyle’s daddy’s name). It was nice to put a face with their names in person and not only photos. Jana was super sweet and brought Charlie a ton of positioning pillows and even brought a sleeping pillow for Lily. Unfortunately, we didn’t get to see much of Kalair, Arturo, Liz and Tim because they were late due to unforeseen circumstances. But it was GREAT to see them for a short while.

Monday we headed out to Madison WI to see Charlie’s doctors. We made a pit stop in Waterloo, IA to see my Grandparents and my aunt and uncle. It was great to see everyone. Then we headed out to Madison.

Tuesday we had to be at the hospital for an Upper GI. It all went well and everything is working right with the G-tube and Nissen. By the time we got back to the hotel, Grandma Sykora was there with cousin Sarah. It was perfect timing for Lily and Charlie to have some fun in the pool. We also invited another SMA family to come to the pool with us – Sophia is the same age as Charlie and we met them a few years ago at a FSMA conference. The kids had fun playing ring around the rosie in the pool. Charlie and Sophia had fun lying by each other and drying off. We have loads of fun photos.

Wednesday started a long day at the hospital. Luckily for Lily she got to stay home with Grandma and Sarah. We had to be at the hospital at 8:30 a.m. It started a long day of doctors, therapists, nutritionists and surgeons. We didn’t get to leave until almost 5. We were there with three other SMA families. Two of whom we’d never met before. But Sophia was there and Charlie and she had fun during their down time together watching movies or driving the wheelchairs in the hall. We didn’t get the answers we wanted to hear. They didn’t get any answers on all of Charlie’s GI issues, but at least the GI specialists has some tests here that he wants to run. So maybe we’ll find something that causes his issues. Then we met with the Orthopedic Surgeon. He thinks that Charlie needs to have growth rod surgery within a year. It wasn’t news we wanted to hear. The surgery is very extreme. It will require him to be in the hospital for 3-7 days. Then every 6-9 months it’s surgery again to lengthen the rods as he grows. The scar is from neck to pelvis!!! We are going to go to a spinal specialist at KU Med for a third opinion. The good news was that he looks good in every other way. Dr. Schroth thought we just needed to keep up what we are doing. So other than his scoliosis and the unanswered GI problems it went well overall. We got back to the hotel very tired and ready to relax! Charlie of course was ready for a swim!

Thursday we all packed up. Grandma and Sarah headed home and we headed to Chicago to visit some of John’s friends. We got into the hotel early afternoon, had a nap and then dinner and to bed!

Friday, we met two of John’s friends and their families at the zoo (I can’t remember which suburb). It was fun. Charlie drove blue for part of it. He got to ride an assessable merry go round and had fun. After that though he was ready for his manual chair. So we changed out chairs, had lunch, went to the dolphin show, saw a few more animals and headed home. We didn’t see much of the zoo, but we had a good time. Charlie and Lily LOVED the dolphin show. You should hear Charlie talk all about it! After that, we ran a few errands, got Charlie’s needed equipment from the hotel and went to John’s friends house. Charlie went down for a nap and we hung out and ate. Another of John’s friend and his family came over for a bbq. Charlie took along nap, but after he woke up – he had so much fun playing with the three older kids. It was so nice to see him play with the kids – he always wants to participate!

Saturday we headed home – it was a long drive, but both kids did great.

Sunday, we had a dinner meeting with three other area SMA families to talk about the upcoming FSMA run/walk. Charlie and Lily had fun playing with the kids. Then we headed over to another friends house for a 40th birthday BBQ. We got home later that night and were all ready for bed! But it was a nice way to get back home.

This last week was busy playing catch up. We are getting ready to leave again Friday to head up to MN to visit with John’s family.

So whew, that’s our update. Charlie and Lily are both doing well. Lily is actually over at Grandma’s tonight for a sleepover. So once Nurse Jane gets here – I’m off to bed for a hopefully, full night of sleep.

Oddly enough, we have several sick SMA friends so please keep Ryan, Chase and Chloe in your prayers. You think that summer is supposed to be sickness free – but not this summer

Friday, June 16, 2006 3:58 PM CDT

We’ve had another fun, busy week. The kid’s have a babysitter and her husband who just had their first child – a little girl name is Ava. They came by on Sunday to introduce us to her. Ava was barely a week old. Both kids are in love and so enjoyed holding her. One of these days, I’ll get photos updated ;0) We also took the kids to see “Cars”. They really enjoyed it. And it was perfect; because the yellow French car in the movie is the same one that Charlie got in his ‘treat’ bag during our SMA get together. He loves having an association with it now.

Lily had a friend over for a play date on Monday. Charlie had so much fun playing with them too – even though they put make-up on him and did his hair (as much as you can do with less than an inch of hair). They put a couple bows in. He so enjoyed being included in the playing. Both Lily and her friend Julia are so sweet – Charlie has a crush on Julia I think LOL

Lily had her first T-ball game on Thursday night. She did really well and had a lot of fun. Charlie loved cheering her on from the side lines. He loves being out and about and being part of what is going on. One of the moms from Lily’s team brought their 2 ½ pound little dog – some kind of terrier. Charlie had so much fun playing with her. Makes me want a lapdog for Charlie :0) John would kill me – he thinks Maggie is enough of a pain in the rear with out added another dog. I swear this little dog weighs less than Sophie our guinea pig!

This weekend we have two bday parties. One is for Arutro – a friend who also has SMA. He is turning one already! His big sister is Kalair – one of the first SMA kids we met and someone who brings us such hope and inspiration. The other party is for Lily’s school friend. It’s amazing how busy things can be!

We will pack on Sunday to be ready to head out bright and early on Monday for Madison. Charlie has doctors appointments at the University of Wisconsin Children’s Hospital - this is where we went for Charlie’s g-tube surgery. We will meet John’s mom and one of our nieces up there to help play with Lily. Poor Charlie will be in appointments for most of two days! Then we’ll head to Chicago for a short visit with some of John’s old friends. I’m tired already :0)

Hope all is well – God Bless.

Monday, June 12, 2006 9:16 PM CDT

We had a fun last two days. Yesterday, Kyle and Jen (our babysitters) came by with their week old daughter Ava. Charlie and Lily absolutely loved her. I'll post some photos soon on my www.our-sma-angels.com/charlie site if you want to see them. Both Charlie and Lily loved holding her. It was too cute for words.

Then today, Lily had one of her best friends, Julia, over for a play date. They totally used Charlie to make over. He had bows in his hair and make up on his nose and face. He loved the attention! Poor kid needs some male friends over or he's going to think painting fingers and toes and putting on make up and hair bows is normal practice for a young boy - crack me up!

We are still trying to recover from our trip -- and can't believe we leave again in less than a week. Just had to share a little update.

Saturday, June 10, 2006 10:21 PM CDT

Ok – We’ve been back for three days, so I guess I have no excuse on not getting an update out. We ended up going to Cincinnati and had a GREAT time. Charlie traveled well and his GI issues were much better. We left last Saturday and made it to Mt. Vernon, IN. There we swam and went to bed early. The next day, we got a late start on the road so we barely made it to Cincy in time for the dinner. Ok – we weren’t that bad, but we had hoped to make it early enough for a nap for Charlie, but that didn’t work out.

The two families (the Cravens who have Sidney and the Lockwood’s who have Emma and Nick) who organized our get together had a room set up for us to hang out in. We ate dinner there thanks to Dana’s parents who bought Olive Garden for everyone. It was yummy. It was so much fun watching so many SMA kiddos and their siblings lying on the floor playing. We got to see many families that we have met before, but we also got to meet several new families that we only knew through the on-line chat. It was great to meet them in person.

On Monday, we all met up to go to the Aquarium. Charlie still wasn’t feeling 100o he didn’t want to take Blue. We went in his manual chair instead. It was an awesome aquarium. Lily and Charlie loved all the fish and sea animals. They really enjoyed the hands on exhibits. They both touched a starfish. Charlie was too afraid to touch the sharks, but I think Lily did! The area were they have a ton of Rainbow Lorikeets that you can feed was a little overwhelming for Charlie as well. It was funny to see him apprehensive about it. He wanted to leave right away J We did catch a photo of him feeding a bird before it was time to go. It was so wonderful to see so many kids in their wheelchairs and strollers all together. I think we were quite a site! Several of the kids were zooming all over the place and having a blast. I wish Charlie felt better so that he could have zoomed around with them too. After the aquarium we went back to the hotel to take a nap.. We almost slept through the swim time! But Charlie Lily and Daddy made it down there in time to enjoy a dip with some other SMA friends. Then it was a rush to get the kids cleaned up and to the room to hang out with the moms while the dads had a Guys Night Out. The kids and moms ate dinner in, watched a movie and did hair, makeup and tattoos. Charlie wanted his nails done too – so who was I to say no. Needless to say, Dad made us remove it the next day before our trip to the zoo. We had fun chatting and playing with all the other kids until we headed up to bed. The men stayed out until 11:30 – that’s a late night for Daddy these days ha ha!

On Tuesday, we got up and headed to the Cincy Zoo with the gang. Once again, Charlie didn’t want to take Blue. So we headed out to meet everyone. We had a bad experience at the zoo. Charlie kept asking to lie on the floor. Thankfully, we had his mat. We actually had to borrow the Lockwood’s suction machine. Then Dad had to run out to the Van to bring ours in. We never need to have our suction machine with us. We don’t know if Charlie’s GI issues were causing this or if we just need to get use to another change in our routines. Charlie only wanted to stay about an hour and then he kept asking to go home. So we went ahead and headed out while the rest of the group stayed. When we got home we coughed and suctioned Charlie and he felt so well that he wanted to go swimming. So we went to the pool for a while, and then put him down for a nap. That night the men played with the kids in the meeting room and the women went out! There were nine of us. It was sad, but funny because we kept talking about how we need to talk about something other than the kids, but no matter how hard we tried, within a few minutes we were back talking about them. It was fun and nice to be out with a bunch of gals.

The next morning, we packed up, said good-bye to everyone who hadn’t left and hit the road. We made it to St. Louis and then spent the night. John took the kids for a swim and then we all hit the sack. Traveling is exhausting J But it was such a great trip. We got home Thursday afternoon, put Charlie down for a quick nap and then headed over to a friends house for dinner. We were there with several families. Charlie fell in love with the girl who lives next door and helps out. He kept calling for her to come over and sit by him. He had fun playing with all the kids although it was hard because they wanted to run around in the yard. John was great and ‘helped’ him play soccer for a while. It was a fun ending to our trip. But we are glad to be home and getting settled again.

Today we took Charlie and Blue to Target. He had fun cruising the isles and had to stop and check out Mickey, Pooh and Eyeore on some shirts – It’s so cute to see him in control of where he goes. He was so good and stayed with me even when we had to get a bunch of different things. And he was such a big help and wanted to carry the bananas to the check out.

It’s so good to see him better. Now, if we can just get some weight back on him! He lost more than 2 pounds this last round with the GI issues. We have started him on Prevacid and hope it helps. Both John and I got that advice from parents at the get together.

We leave in less than a week for Madison. Charlie has doctor’s appointments. So we’ll try to get organized this week so we can leave again the week after!

Our SMA Family got some horrible news this morning. Cassie, one of the 9-year-old SMA Twins who have been an inspiration to so many, died last night. It was totally unexpected. It is really hitting a lot of us hard. Please pray for Cassie’s family and especially for her twin sister – they were so close.

Monday, May 29, 2006 8:59 PM CDT

Ok – it’s been another two weeks since I last posted. Things have been going well, at least until recently. Charlie is having his tummy/GI issues again. It’s such a struggle and he’s so miserable. Hopefully, it will be cleared up before we need to leave for Cincinnati.

Things have been busy for us this past week. Last Thursday was the big charity fundraiser that I’ve co-chaired for the last 6-7 years. It went great, but I’m exhausted now. It was also John’s birthday week. We went out to dinner and then had birthday cake. Charlie loves singing Happy Birthday so it was a good week with his Aunt Mona’s, Uncle Robert’s and then his Daddy’s birthdays to sing for.

On Friday night, John’s sister and her family came into town for the weekend. The kids were so excited. Lily woke up bright and early to find them. I had to send her back to bed because it was still too early and they were sleeping. It’s fun that she was so excited.

Saturday we hung around the house and then the men took the girls to the pool. Charlie was still burping badly, so he stayed close to home. We did get to take him outside to swing with them and to play on the trampoline. He had a great time. The men cooked us a wonderful dinner and then the kids played a few board games and went to bed. It was a nice day.

Sunday, we took the kids to Deanna Rose Farmstead, hoping that Charlie’s burpies wouldn’t be too bad. He did okay but we had to lay him down twice to get the gas out. I get so frustrated when this happens. I can’t figure out what causes his GI issues. The first thing the kids all did was to feed the goats. Charlie always thinks that is a lot of fun. He kept asking for ‘one more, one more’. Then the kids went fishing and caught so many!!! They also had a great time feeding bottles of milk to baby goats. It was a great day. The farmstead has a play set that has some ramps, so Charlie and Daddy went over them all the way to the fort – he thought that was pretty cool.

This morning the girls put on a couple shows for us, which Charlie loved and then Mona and her family headed for home. Charlie was still pretty burpy all day. After his nap, he had a dip again. His O2 saturation dropped in the 80s and he was really upset and wouldn’t stop crying. John and I had to work on him for a good 30 minutes. We got so much stuff up from both his throat and his nose. He kept asking for more cough cough. He did well this evening but we had to go up a few more times to cough cough and suction. I sure hope we can get this beat so we can go on our trip this weekend.

Wish us luck. This Wednesday is Charlie’s IEP (Individual Education Plan) meeting with the school district. John and I really need to figure out what we want to try to do with Charlie for the next school year.

That’s it for now, please say a few prayers that Charlie gets over this GI issue and that he stays healthy. His mini-crashes really scare me because they seem to come out of nowhere with his burpy issues.

Thursday, May 18, 2006 2:19 PM CDT

We’ve been having a great time with Daddy being home. Maybe that’s why I’m so belated on any update. We’ve been having a lot of fun. We took the kids to see The Wild a few weekends ago. Charlie and Lily seem to have such a good time going out. Charlie cracked me up because he was so excited every time he saw a Hippo. Maybe that’s his new favorite animal (other than Spider-man who is only ½ animal he hee). Daddy and Lily went to a Father/daughter dance at our church and that was a lot of fun for them. Then this last weekend, we took the kids to The Wiggles. Charlie drove Blue and everything! But man, it was hard getting him through the crowds. Murray (the Yellow Wiggle) came up to our level and went around greeting the crowd. He stopped and talked with Charlie and Lily and shook their hands. It was one of the highlights of the show. Charlie, of course, wanted to be held so we could dance too all the songs. It was a lot of fun.

We’ve also been having a lot of fun with our neighbor’s twins, Jackson and Ella. They are 2 and love to come over to visit. I have the cutest photo of Ella kissing Charlie that I’ll have to share.

All in all things have been going great. Charlie (knock on wood) has made it through the winter without getting sick. Lily had her last day of school on Monday and her end of school picnic yesterday. Her dad had to take her because I had a 2-½ hour meeting with the school district to start Charlie’s transition to school. They were all wonderful. We met the OT, PT, Speech Therapist, Special Ed Teacher and the school nurse. They were all wrapped around Charlie’s fingers by the time they left. Hopefully, we’ll have a smooth transition and we’ll be able to work out a way for him to go to school when able and be home bound when needed.

I had a GREAT Mother’s Day. I am so blessed by an incredible mother of my own who is always there for me and now, I am blessed with two amazing children of my own. They bring me such joy and have changed my life for the better. It is still beyond comprehension sometimes how much inspiration, courage and love that I get from my children. I hope you all had a Happy Mother’s day too.

I’ll try not to be so long between updates as someone told me that they worry something is wrong… God’s blessings to all you Moms!

Monday, April 24, 2006 9:13 PM CDT

Charlie, Grandma and I went to Children's Mercy today for Charlie's Orthopedic Clinic appointment. It went well, but his scoliosis has progressed a lot faster than I would have liked. The Doctor isn't too worried because it's still flexible, but he thinks we will have to look into doing something (ie surgery) within a couple years. That is NOT good news. Right now, we are going to try to use some different orthopedics to see if we can slow it down. But the doctor did say that it isn't proven that the braces really help stop the progression of the curve. The only fun news was that Charlie had a blast. He loves driving Blue and showing off. He was mad at me when it was time to leave. He didn't want to leave the hospital - the halls were so much fun to cruise around in. I had to actually count to three and tell him that I would turn him off and drive myself if he didn't come to the van. I felt so bad for him, but we had to leave. He was so tired when we got home that he took a THREE hour nap :0) He was the hit of the clinic though. All the nurses were talking about him and his fancy power chair that the doctor said he couldn't wait to see him drive.

Sunday, April 23, 2006 9:56 PM CDT

Spring is officially here. We have been out and about enjoying the weather. The other day, Lily and Charlie played with our neighbors Jackson and Ella. Lily had a blast driving the little ones around in her jeep and Charlie had so much fun driving around with them too. They are so much fun to have next door. They are only about six months younger than Charlie so I know they’ll grow up being the best of friends. I have a ton of photos that I need to post from all month. I promise I’ll get to them soon.

Charlie, Daddy and I took Blue to a local park and walked/rolled for about an hour on the bike path. Charlie had a blast. He kept seeing all the birds or flowers or the creek and he’d stop and say how beautiful it is… He is such a GREAT driver now, we try to take Blue with us wherever we go. It is so nice to be able to take long walks with him while he drives. He had so much fun!

John and Lily are out of town for a long weekend so it is just Charlie, Grandma and I hanging out. We dropped Lily and Dad off at the airport and then went to a new mall. We were tooling around with Charlie driving Blue. We went past a Build a Bear and Charlie just had to go in. He saw a big blue Cookie Monster and begged to have it. How could we refuse he hee! So Charlie got to build his Cookie Monster. He pushed the foot pedal to stuff him full. Then Charlie gave him a ‘bath’. Charlie wanted to buy him a Spiderman outfit, but it was too small. Charlie loves his new Cookie Monster and sleeps with him. It’s funny because it’s as big as he is! Ok—not quite, but close.

Tonight we took Blue to a restaurant for our family dinner with my brother, his wife and their three kids (and Grandma of course). After dinner, Bobby and Charlie ran/rolled up and down the sidewalk for about 10 minutes just having so much fun. I can’t express how much it means to me to see Charlie being independent and having so much fun on his own! He is my inspiration.

Mom and I are just finishing up watching a documentary called 39 Pounds of Love. It is a story about a 34 year old man with SMA who travels from Tel Aviv to the US to show a doctor that he outlived his diagnosis of maybe living until 6. It’s a good show. In the movie, they only mention him having Muscular Dystrophy and not SMA, so that’s a bummer, but it was cool to see.

Please add The Peterman Family to your prayers. Their beautiful 15-month-old daughter Baylee lost her fight with SMA this week.

God Bless…

Sunday, April 16, 2006 4:07 PM CDT

***************Very long update***********

We’ve had a crazy last week as usual, but it’s been a ton of fun. We had our meeting on Tuesday with the school district to start the process of Charlie’s transition. The rep from the district was nice and seems very willing to work with us in whatever way we want. She took all my questions (our questions) and said she’d get back to us. I’m still very worried and confused about the whole transition. We love our PT and OT who we work with from the 0-3 program here in the area. It is so sad that we will be losing them soon. It’s even harder to believe that Charlie will be three at the end of summer and will be ready for preschool! Time sure flies.

On Wednesday, Lily had her class musical program. She did a great job. I’m still singing the Barstow Piggy Opera songs in my head. It’s amazing how much more outgoing she’s gotten since last year’s music program. You can really tell how much she and her class have matured since their preschool year.

On Thursday afternoon, I picked up my college roommate, Sam, and her family at the airport. We were their last stop on their Spring Break tour. She has three kids, a boy Michael who turned 8 Saturday, a girl Shay who is 4 and another girl Reece who is 2. So Lily and Charlie were in luck to have new friends to have so much fun with. This is the first time I’ve met Sam’s youngest and Sam’s first time to meet either of my kids. The kids became instant friends taking off immediately to play in the back yard and on our neighbor’s trampoline. Charlie and Lily both had a great time all evening playing with them. We played some card games after dinner and tried to wind them down at a decent hour.

Friday started off early. The kids were raring to get outside to play again. We’ve been having warmer than normal weather this week – it’s been in the 90s! But it was perfect for the kids to be playing all day. We then got organized and went to the Deanna Rose Farmstead. We took Blue with us and the kids had a blast. Charlie is doing so awesome in Blue. At the farmstead we checked out a ton of the animals, went through the new butterfly garden, rode on a hayrack ride, went fishing, fed the goats and even did the mining. It was a packed morning. After that, we zipped home for lunch, put Charlie and Reece down for a nap and the older kids went with Sam and me to the barn to ride Harley. I took each kid around the arena several times and then we headed home to quickly shower, change and get ready to go out to dinner. We had dinner at our typical Friday night restaurant, Macaroni Grill. We celebrated Michael’s birthday a day early. It was a fun ending to a packed day. The kids were beat by the time we got home and we put them to bed. And then we all called it an early night.

Saturday was another gorgeous day. The kids played outside and then we got ready for the Easter Extravaganza at our Church. We took Blue with us so that Charlie could have fun and be independent. The day started out in the basement with a breakfast. Charlie was playing around driving and another boy was playing ball and jumped in front of Charlie driving Blue. Charlie ran over his ankle causing the boy to fall into the power chair and BREAK the joystick! I’m hoping this isn’t too expensive to fix, but I’m not sure how easy it will be – the joystick is from Europe. John was able to use Duct Tape (the wonder fix it all) to make it useable, but we will need to figure out how to get it fixed. After that fiasco, it was up into the sanctuary for a puppet show, then outside for the egg hunt. The kids had a blast. After that, there were crafts, a jumper and a snake and an ambulance to look through. It was a whirlwind two hours, but full of fun. The kids had a blast. I will post a bunch of photos soon. We had to take Sam and her family to the airport that afternoon. Lily went with me to drop them off. She and Shay bawled like they were best friends leaving each other. It was cute. I think all the kids had a GREAT time, but we were all very tired from our two and a half days of fun.

Today, we had a great time at Church and then Grandma’s for Easter. Charlie and Lily love their cousins. Taylor is so good with Charlie. He was telling her to ‘sit here’ all day. Lily and Charlie had a great time playing with their cousins and finding Easter eggs. Now we are all ready for a little down time – at least for a day or two!

We hope everyone had a GREAT Easter.

Thursday, April 6, 2006 9:04 PM CDT

Once again, we had another great few days. The biggest news is that John is officially unemployed. He left his job at American Century to spend some time with us. It was a hard break since he’s been there for more than 12 years. He plans on starting his own business in a year, but wants to take some time off to spend with the family first. This was our first week of being home together every day. It’s been great. The kids love having Daddy around. He’s been able to drive Lily to school and even went up to meet her at lunch.

Lily was in her school play on Monday. We all went to see her and brought Blue too. Charlie so enjoys driving Blue in public. Lily did a GREAT job in her play. She had three lines and did pretty well. I hope that doing the after school plays will help build her confidence. She can be just as shy as I was as a kid. (And still am even though people laugh when I say that). Charlie loves watching Lily and the other kids perform. He is such a ham – he was laughing and giggling when the kids would fall down. It was a cute play.

Today after Charlie’s therapy, we decided to take Lily and Charlie to our neighborhood fire station to introduce ourselves to them. The kids had a great time. Captain Russ showed us around the station and told the kids all about the fire trucks. He was such a nice man. We will definitely come back and visit again.

We were supposed to head to Des Moines tomorrow to spend the weekend with John’s sister and her family. We had to cancel because one of our nieces was sick earlier this week and it’s just not worth the risk. We hope to reschedule soon because the kids (and adults) love getting together with them. They drive down from Minneapolis and we drive up. It’s fun to spend time in the hotel pool and playing in the rooms. We are so sad to postpone the weekend fun.

That’s all that’s going on. Charlie’s still doing well with his eating. We hope that we get some of that weight gained back. It takes so long. We did have some sad news in our SMA Family. A little baby girl, Jewel, became one of the awful statistics of this disease. She went to join our other SMA Angel friends in Heaven – so please pray for Jewel and her family. Make sure to hug your kids and your spouse! Life can be so unfair sometimes.

Monday, April 3, 2006 3:38 PM CDT

Once again, it’s been a week since I’ve updated. I don’t know where the time goes sometimes! We had another good week. Charlie and Lily are both staying healthy and well. The weather seems to be turning to spring finally, so we are looking at more days outside playing.

The weekend was busy as usual. Lily had three birthday parties and a soccer game. I was worn out by Sunday night. We had a good friend over for dinner on Saturday night. Charlie had a blast laying on the dinner table entertaining us while we ate and then he loved showing off how well he drives Blue. He loves being the lead engine in our train. We all do a semi hokey pokey as we let him lead us around the house. He is a funny kiddo. I’ll make sure to post photos of him outside the other day as well as being the lead engine of our train.

Today, we went down to Children’s Mercy Hospital for our bi-annual check-up with the Rehab Clinic. We brought Blue with us. Charlie had a great time and so enjoyed being the center of attention. He saw the PT, OT, RT, several nurses and of course, Dr. Ann. He got a clean bill of health. It always amazes me how clueless some people can be. We had to ask a nurse if she had washed her hands and she said “oh and I do have a cold, let the other nurse finish up!” I’m so mad at myself for not stopping her sooner. I just hope we didn’t get him sick by going in for a check up! It’s always so hard to go every 6 months, because you can’t avoid cold/flu season. . .

While we were there, we meet a new SMA family. They live about 3 hours away. They have a little girl names Bailey (spelling I don’t know). She was diagnosed at 9 months. She was fine until she got really sick at 19 months and she needed to be trached. That’s how they ended up at CMH. They were back today for a check up. I gave them my information and hope they contact us. I know how much it means to me to have my SMA contacts and SMA Support. I want to give them the same opportunities if they want them.

Tonight, we are taking Blue to Lily’s school. She’s in a little play. It will be another great outing for Charlie as well. I’ll try to get the new photos up soon. God Bless!

Monday, March 27, 2006 8:55 PM CST

Well, the sleeping all night long was good for only one night -- but he is sleeping better. Some nights it's only 3-4 times, so that's still GREAT!!! He is doing so well. His tummy issues seem to be resolved again. I don't know why it seems to happen every 6-8 weeks. I have to brainstorm to see what in his diet builds up and then causes it. It's so frustrating to have him gain back the lost weight only to have it happen all over again. What a weird cycle!

He is so much fun and so smart these days. He monopolizes the laptop (which of course we got for him LOL). He is learning to use the touch mouse and can even click. Right now, he's having fun playing simple games, but he's learning fast. We have to start figuring out what we are going to do about school in the fall. Right now, we are in the 0-3 state program. They provide physical and Occupation therapies for Charlie in the home. Since Charlie turns 3 in August, we have to be turned over the the school system. It scares me for many reasons. We want to figure out what is best for Charlie while also weighing the pros and cons of trying to put him in a public pre-school program. I know he'd excel and love being around other kids his age, but what about the colds, flu's and other illnesses. I don't what him ending up in the hospital either. We will start the transition soon... lots to figure out!! And I hope that they'll continue to provide the OT/PT as well.

We had another great weekend, although, we realize taking Charlie and Lily to church with us means we adults don't get as much out of the service... On Sunday, our good friend Ty Toney invited Lily and Charlie over to play with his model train set. He and his dad made the tracks so that Charlie could lay in the middle. It was so fun to watch Charlie get so excited by the train. He loved blowing the whistle and doing his Charlie dance to the choo chooing. Lily stayed to play for another 1/2 hour while we brought Charlie home for his nap. The Toney's are a great family and great friends.

After another night of playing hide and seek in Blue, Lily and Charlie are sound asleep. So I better get off and go spend some time with my hubby. God Bless!

Wednesday, March 22, 2006 9:01 PM CST

We had a GREAT night last night. We tried out a new mask for Charlie -- not sure if that helped or if he's getting use to his new air pressure pad on his bed, but either way, he slept all night long!!! He never woke up. Not even once. This is a BIG difference from the 10-15 times that is normal.

Charlie's tummy is also much better. We are slowly building back up his food/calories. He lost a little more than a pound while his tummy was bothering him. It seems to happen every two or three months. I hate that I can't figure out why. Regardless, he is much better and so we'll try to get his weight back up.

Better run -- say some prayers that Charlie is starting to sleep all night long. Then we'd just get up once or twice to roll him to keep him from getting bed sores.

Hugs to all.

Sunday, March 19, 2006 8:03 PM CST

We’ve had another fun week even though Charlie’s still having tummy issues. I hate it that we can’t get him back to his baseline. He’s maintaining the weight – meaning not losing more, but we still need to get more calories in him!

Thursday night we had a birthday party at our neighbor’s house for their 2-year-old twins, Jackson and Ella. Lily and Charlie had so much fun playing with all the kids there. The twins got a play kitchen set and Lily spent so much time with that. Have I told everyone that she makes me watch the Food Network now? She pretends to be Rachel Ray all the time. She’s even asked me “when are you going to learn to cook?” How about those cookies? Anyway, we all had a great time at the party. . I’ll post photos from the evening soon on the smasupport site.

On Friday we had a very busy day. Nurse Lin came at 8:30 to give Charlie his RSV shots. Charlie gets these monthly – one in each thigh! He cries so hard and for him to cry means it must really hurt. While Nurse Lin was still here, we had our new case manager for KidScreen come to meet us. Then Charlie’s Respiratory Therapist showed up to bring him a new mask and then his Physical Therapist showed up for his session. After a whirlwind of activity, it was just Kristy the PT to finish up his therapy.

We had a half an hour break before a good friend and her two sons came over to play. Charlie and Lily had a good time hosting Will and Wes, and Mommy had a good time catching up with her friend Tracy. They stayed through lunch and then left to give me time to clean up before John’s parents showed up for a weekend visit.

John, his parents and I went to a St. Paddy’s day party that evening, but had to laugh that the party was over by 8:20 because everyone had to rush home to watch the KU game. How depressing that was to watch – the game, not the party ending. Well, actually both since it was a night out that was hardly a night out with it ending so early…

Saturday, we took the kids, John’s parents and “Blue” to the mall for a drive. It was so crowded and quite a challenge to keep Charlie from accidentally running over people weren’t looking. Lily and Charlie rode the Merry Go Round with Daddy and Grandma. And then Lily and Grandpa rode the train. We only stayed at the mall about an hour, but that was enough. When we got home, Lily, Grandma and Grandpa went to see the Shaggy Dog. They got home just in time to turn around a go to church then to dinner. The kids had a fun day, but we were all tired by the end of it.

Sunday was a lot quieter. We had a nice casual breakfast and then the kids played a bit with Grandma and Grandpa. Charlie watched Lily ride piggy back on Grandpa so he wanted to try it. John helped and it was too cute looking at Chalrie’s BIG SMILE when he got to do what his big sister did. Then Lily rode on Grandpa’s shoulder – so Charlie had to try that too. I’ll post photos from all weekend but my favorites are seeing Charlie’s happiness at riding Grandpa’s back and then on his shoulders. Grandma and Grandpa left late morning to get home to beat the snow, ice and sleet that was suppose to hit. They just called and said they didn’t see a drop of precipitation in the whole 8 hours of driving! Too bad they had to rush home.

Whew, I’m tired just reading all of this. I do want to share how cute it is that every day, we have to play hide and seek. Charlie loves to drive Blue and find Lily and Daddy. Then Charlie and I hide and Lily and Daddy find us. He is getting so good at driving Blue! He is such an amazing kid.

Well, we have to get the kids to bed. Hugs to all.

Sunday, March 12, 2006 9:35 PM CST

We had a good weekend. Yesterday we went took Charlie and Lily to the park to feed the ducks and then to Target with Blue. Charlie loved driving Blue around the park and had even more fun buzzing around Target. He would see things he liked and stop and say “ohh, mommy, look.” I think we have a shopper on our hands. He wanted both a Nemo and Spiderman bathing suit. And then he wanted a sponge bob disposable camera. Just all sorts of things that he “needs.”

That night we went to a friend’s son’s baptism and then over to their house for pizza. Charlie loved being around all the kids at the table eating dinner. It’s so nice to see him socialize with other children.

Today, we just hung out at home, then tonight we went to dinner for my nephew’s birthday. Charlie was burpier than he had been, but he was still doing okay. On the way home, he really became uncomfortable. He was struggling to get the air out. It caused him to have some issues with his swallow to the point that you could hear the rattle in the back of his throat. We got him home and suctioned him out. He still didn’t sound great. I asked if he wanted to cough cough and he said yes. I got him back upstairs and he said, “help me mommy”. While I started to cough him, John got him hooked up to his pulse ox. He was in the 80s. Every time I’d finish a round of coughing, Charlie would ask for it again. At one point while we were coughing, he was in the low 70s for his O2 saturation! We weren’t having luck getting anything coughed up and by now, Charlie’s heart rate was pretty high. We decided to give him a break on his pappy for a little bit because he asked for it. Even with the pappy on, he was only in the low 90s. We decided to give him a neb treatment. That seemed to help a lot. After the treatment, we coughed and suctioned him again and he was around 96. He was all happy again and wanted to come downstairs and watch Dora. He was his normal happy self again.

We watched Dora and then took him up to bed. He was sating at 98-99! So a quick but scary dippy. And once again, have no idea what caused it.

Lily starts here TWO-WEEK spring break tomorrow. I’m not sure how I am going to keep her busy and occupied. Better run.

Friday, March 10, 2006 2:09 PM CST

Charlie is doing okay, but he is still having his tummy issues. He's lost a pound already! So much for what we just gained back. Other than that things are going well. Charlie cracks me up all the time. He says things like "no fair" when it is time to nap. He gets this funny voice and says "no fair, no fair" I have to try really hard not to laugh. Right now, I'm sitting here typing while Charlie is "suppose to be napping". I'm listening on the monitor to him sing and have all sorts of conversations with who knows whom because he doesn't want to nap. I have a feeling that today might be another day that he decides that he's too old to nap anymore.

Wait, I hear...quiet. He might have succumbed to his new bed. We got a new mattress topper today. It's an air mattress. We were all set to get this fancy new mattress that our friend MJ has - one that would rotate him all night as well as do chest physiotherapy. We were so excited. Then we found out that the minimum weight is 50 pounds!! It will be years and years and years before we hit that number. So, instead we got the continuous pressure pad. We'll see if it helps him sleep better at night. Maybe we'll just have to roll him 2-5 times a night instead of the usual.

Well, I better sign off. I'm going to try to get some stuff done before Lily gets home from school.

Tuesday, March 7, 2006 7:10 PM CST

This is actually started yesterday and finished today...

I just have to share a cute story about Charlie these days. He wakes up in the morning and when I come to get him he greets me with “you’re so pretty mommy” or “pretty hair mommy”. It’s such a wonderful way to start the day. Man, I love this kid.

We had a great day on Sunday. We woke up and decided to take Blue on his maiden voyage in our van – yes; we are now MOBILE with Charlie’s power chair. The lift is working and Blue fits just perfectly! Yippee! We took Charlie to a mall in town that is very big, very open and not crowded. He had a blast. He kept telling every group of people we saw “hello people”. He still says, “I’m so happy” and “it so fun.” The only thing that made me sad was how many people just avoid looking our way or ignored Charlie’s “hello people.”

After we got home, John’s Aunt Mary and Uncle John stopped by for a short visit on their drive down to Arkansas. We went outside some more and Charlie and Lily played on the jungle gym. Charlie loved going down the slide – this is a new adventure for Charlie – one that we’ll have to do a lot more this spring and summer. Then we spent more time driving Blue. Charlie didn’t want to get out. He loves driving and took off down the block leaving us in the dust. We then took John’s Aunt and Uncle to dinner at a local BBQ joint. I don’t know if Charlie was just over tired from a long day or what, but his tummy really started bothering him – so much that we had to eat fast and leave quickly.

He was burpy earlier in the day and the day before. I think it just hit full-blown by Sunday. Today was a really bad day for him. So after a wonderful Sunday, we had a horrible Monday. He was uncomfortable all day – hardly able to take any food. And he even asked to be suctioned several times. He was having a very hard time with his secretions all day. I hope he isn’t getting sick. I know that the tummy problems are diet related, but I hope that his extra secretions aren’t an indication that he’s catching something.

Well I better run. Please pray for a better day tomorrow.

Ok – it’s now Tuesday and I didn’t post last night because I got called away. Charlie’s tummy is still very bad today. It’s so sad watching him in any distress. Pray that tomorrow it’s another little step closer to being better.

Thursday, March 2, 2006 9:13 AM CST

We’ve been busy and I’ve been so bad about updating as usual. The kids are both doing great.

On Saturday, we went to Kalair’s 6th Birthday party. It was a lot of fun. There was a clown there who did face painting, made balloon animals and toys, led a parade and did a show. The kids loved it. Charlie is so into Spiderman these days (not sure where that came from) so he had his face painted like Spiderman – basically all red with white rings around his eyes. He got so upset when I was washing it off so we could go to church LOL. Lily, of course, chose to be a princess.

Kalair looks great. She’s the first kid we met with SMA after we were diagnosed. Her mom Liz was a tremendous help in getting us started in all the right directions. We are eternally grateful for all the have done and continue to do to help us.

On Sunday, we took the kids out to Cabella’s to see the aquarium and all the stuffed animals. They enjoyed that as well.

We’ve been having great weather – way warmer than normal. Charlie and I have been getting outside to drive Blue. He is a pro these days. He would just keep going and going. Tuesday, the nurse, Grandma, Lily, Charlie and I all loaded up and went to the zoo. It was so much fun. I am still so anxious to get his Power Chair fitted with the hooks so we can take it with us. He would have had a blast in it at the zoo. Hopefully, we’ll have everything in place by next week so we can start taking Blue with us.

Please say prayers for our SMA friends who are sick. It seems like we keep having cases of RSV – even in older kids. It’s scary.

I’d better sign off. I’ll post photos and new videos on his www.our-sma-angels.com/charlie site as well so check out the photos and video page. Hugs!

Sunday, February 19, 2006 10:26 PM CST

Saturday we had a fun family adventure. A friend of Lily’s from school had a birthday party that we all were invited to. We took a train ride (Amtrak) down to Union Station for the party and then rode the train back. It was a fun adventure, but it wasn’t smooth – that’s for sure. We drove to a neighboring town to meet the train. It was a FREEZING – under 15! They had a glass waiting area, but it was still cold and the train was 40 minutes late!! The kids loved the train ride – it was about a 25-minute trip. We got to Union Station and had passes to Science City, but because we were so late, the kids only got to play for 25 minutes before it was time for cake and back to the train. It was hectic, but worth it. Charlie was so excited to ride the train and Lily had a blast with her friends running up and down the aisle of the train. It was just too bad that the train was late.

Then today, we took the kids to see Curious George. They loved it. While we were there and Charlie was on my lap, I noticed that his Mic-Key button was a little loose. I made a mental note to be sure to add water when we got home. Well, after the movie, we moved Charlie off my lap and his Mic-Key fell out! I had to run to the car (pushing past everyone) and get the new Mic-Key. I didn’t have any lubricant, so I just had to push it in. Charlie wasn’t too happy. But the worse is to come… unfortunately, when we got home, some how, Charlie’s Mic-Key got stuck on something and it pulled out!!! With the balloon full of the water – so it REALLY hurt and he was crying. We had to rush inside and get it back in. Charlie was so brave, but told us over and over again that we hurt him. It broke our hearts. He never complains, so it must have really hurt. I can’t imagine how badly it would hurt… Poor baby. Hopefully, we can make it up to him. He hasn't let us forget it -- telling us that Mommy and Daddy hurt him today...

Thursday, February 16, 2006 9:11 PM CST

We've had a good week this week. Charlie is back to using his stander. Between his tummy issues in the past as well as the last cold, it had been a while since he's been using it. He is having so much fun using it again. He actually CRIES when it's time for him to get out. I don't want to push it too long because I know he'll pay if we do, but I love it that he is excited to be up in it.

We are still waiting to be able to use the lift in the van. We have to take the power chair in to get some hooks placed on it and it's frustrating. The place they want us to go is more than 120 miles each way -- too far for a quick trip especially when there are places within 20 minutes, so I'm still trying to work that out.

I just wanted to give a quick update. We hope all is well with everyone.

Friday, February 10, 2006 5:34 PM CST

Well, we've had a weird week. Charlie has had a few little dips in his Stats, so we've been doing more nebs, CPT, coughing and suctioning. He seems to be doing SO much better today. We started antibiotics on Wednesday - so between that and the extra treatments, I think we're kicking whatever this is. He never had a fever, so it's weird..

The big news is that we picked up our new van on Wednesday night. I'm still trying to figure it all out. But Charlie and Lily both seem to like the new wheels. We haven't had Big Blue in it yet, but we have to get the proper clips put on it for the lift to work. John and I are really scared. It doesn't seem to have any more room in the rear behind the bench than a normal conversion van. And that was teh WHOLE reason we had it done from scratch. Hopefully, this weekend we'll try to get the chair in with a manual ramp. Then at least we'll see if it fits... I don't know what we'll do if it doesn't...
Well, that is our quick update. I'll take photos of the van too and get them on one of these days... God Bless!

Monday, February 6, 2006 4:33 PM CST

Ok after the post that all was well, we had a scare last night with Charlie. It was about 6 last night and he was sitting on the couch with his legs on my lap. He had just gotten up from his nap an hour earlier with stats of 98 so doing good... Well, he just started choking. At first I thought it was his tummy issues resurfacing, but there weren't any gas bubbles. We ran him upstairs and put his pulse ox on to suction/cough him and he was 80s - -very LOW 80s. John started to cough him and cough him and we were getting a ton of stringy stuff up. His stats weren't coming up. Charlie wasn't helping because he started crying (which he never does when coughing). We suctioned and coughed for a good 40 minutes then put him on bipap, did CPT, bled in a neb treatment. He was still only in the low 90s, but as he calmed down he was better and in the 94 ish area. When we were ready to cough and suction again and took off pappy -- he dipped again. We coughed and coughed and just couldn't seem to get the rattle out of his chest. It kept on coming back in it seemed. We had him around 96-97 by the end and he slept well on pappy all night -- probably even better than a normal night because we wore him out with all the work we did on him. Anyway, today he seems fine - like nothing happened. We'll keep our eye on him and hope that it was just a weird dip.

John and I talked about it last night and we know how lucky we've been with Charlie and his health. These little 'dips' that we have had (two now) are so normal for a lot of kids with SMA. We will just have to continue to learn how to handle them. We feel that we have done well so far. Luckily, both John and I were home both time he had his little episodes.

I better run -- Charlie was suppose to nap and he's been talking and singing all afternoon. I guess I should go rescue him.

Sunday, February 5, 2006 4:48 PM CST

Charlie is turning into an excellent driver. He asks to drive "Blue" all the time now and he just tools around and around the first floor of the house. It's funny because he'll stop at the stairs and say "up stairs". It's so hard to tell him that he can't, but we love that he's having so much fun exploring. Then he loves to stop at the front door and say "open door" because he wants to tool around outside. Too bad it is winter! All the joys that you feel when you child is trying to take his or her first steps is what we are going through now. I know he's had some form of power wheels for almost a year now, but we've had so many problems getting him situated in the old chair. So watching him now is so amazing. He loves it and it's so empowering for him to have control.

Charlie has stayed healthy so whatever was causing his scratchy throat seems to have been nothing. There are so many cases of RSV going around that it makes us a little worried. We haven't heard of cases here, but a lot of our friends on chat have been affected as have some of their siblings. It is definitely something that we hope those awful monthly RSV shots that Charlie has to endure are working.

Lily has been doing well too. She, of course, had another birthday party this weekend as she does once a weekend for the next two. She is at that age I guess LOL. I went to a Kindergarten information night at her school the other night. It is so hard to believe that my little baby girl is going to be in Kindergarten in the fall. She is growing up too fast.

Well, I will sign off. I want to take time to down load some more videos of his driving skills improving :0) As well as add some new photos. I hope all is well with everyone.

I did want to say some prayers for another SMA Angel Kyleigh. She lost her brave fight earlier last week. She was almost 3. Her mom is a hero.

Sunday, January 29, 2006 4:33 PM CST

We had a great weekend. Last night, John and I went with our neighbors to a nice dinner and then to see Martina McBride. . She was awesome and it was a wonderful evening. I got the tickets for John for Christmas. We were really worried about leaving Charlie because his voice was getting hoarse - and still is today, but he has no other symptoms. He did fine last night with our sitter, but we were worried.. We aren't sure what's going on, but hope that it's nothing. He has no temperature and his stats are okay. So it's weird.

Today, we had Lauren Gibbs's birthday party. It was so much fun. They rented out a skating rink and we could all have power chairs on the floor. Kristal (Brett's Mom) was nice enough to come pick up Charlie's Power Chair (I've been calling it Big Blue). Charlie was in Heaven. He took off the moment we entered the door. It was his first experience in his chair outside our house or driveway. He loved it and did so well. He is really getting it. It was so much fun seeing him out on the floor with all the skaters and other kids in power chairs (Brett and Claire). Makes me all the more anxious to get our van so we can take "Big Blue" whenever we want. Charlie enjoyed the freedom and didn't even care where his Dad and I were -- he was too busy driving around. Lily enjoyed trying to skate, but that's one talent we will need to work on for her :0) She was slipping and sliding and we were having to basically carry her on the rink floor -- she was fine on the carpet, but lost all confidence on the rink. She had fun so that is all that matters.

Charlie's tummy is still doing well. He is slowly gaining weight -- and I mean slowly. Wish I has his problem LOL. Or that I could give him some of mine! I'll sign off now, but we had a fun, busy, tiring weekend. Big hugs to everyone.

Friday, January 27, 2006 5:23 PM CST

Nothing newsy to report. Charlie is still doing well with his new formula and is steadily, albeit slowly, gaining back the weight he lost. So it's just keep trucking along. He continues to amaze me with his intelligence :0) He is such a smart pistol and he is sooo "2". Doing things like clenching his teeth together so we can't suction the back of his mouth. Then he laughs about it. He knows exactly what a little bugger he is being. He has got one set of lungs on him too. He yells at me all day to "comm eere" or to play his favorite game "1-2-3" -- this means, pick him up, carrying him around and count - he loves going up and down the stairs so he'll yell "stairs" in the middle. It's a fun game, but man, it gets tiring carrying him around. John and I both laugh at our backs and how they hurt from lugging him around. But we won't be stopping anytime soon!

We have a busy weekend. Tonight is John's team's "holiday" dinner. We always do it in January since the holidays are so busy. It should be fun. We have our favorite sitter Jen coming. The kids get so excited. She is wonderful with them both and has learned all of Charlie's equipment so she can put him to bed. It's great to have such a wonderful person to take care of them. Tomorrow Lily has a birthday party, so she's excited. Then Sunday, Charlie and Lily get to go to Lauren's birthday party. Lauren has SMA and is a Type III. Her parents are renting out a skating rink and the kids can drive their power chairs out there too! So we have a friend coming by to get Charlie's chair so he can play with all the kids! It should be so much fun. We ARE still waiting (impatiently) for the van to be done. We keep hearing "next week" makes me wonder if we need to be worried. . . .

Well, I better sign off. The kids are both healthy and doing great. God's blessings to everyone.

Monday, January 23, 2006 9:31 PM CST

Things are going good here. Charlie's tummy is doing much better. I am praying that we've figured it out this time. We've been able to get his weight going back up. He has gained back more than a half a pound so we are happy. He is also doing such a great job driving his chair inside. He is definitely gaining confidence. It's fun to see. We are still anxiously awaiting the new van so we can take his power chair out in public. He is such an amazing kid. I know I'm his mother, but he never ceases to amaze me.

Lily is doing great too. She is getting to be such a young lady. Where did my little baby go? She says things like "Whatever" -- where did THAT come from. Little miss attitude. I love her to pieces.

John and I are still both doing well. John is still busy with work, but that won't change. We try to find time for date nights, but we are so lame - we are usually back home and asleep before 11 p.m.

Well, I better sign off. But our prayers are still with the families who have recently suffered the loss of their child. God Bless.

Wednesday, January 18, 2006 5:39 PM CST

It’s been a tough couple days for our SMA Family. We have lost two beautiful boys, first, Payton who was 5 ½. This blow came two days ago. Although, I didn’t know Payton or his family personally – every loss of an SMA child is like losing a family member. Then today, we just heard that Timmy lost his battle with SMA too. His mother posted on the site a photo they had taken Monday with a memorial candle for Payton. Another shocking, gut wrenchinig blow. Timmy was almost 5. Both of these boys had Type I – just like Charlie.

Please keep their families in your prayers. I’m at a loss and feel very emotional.

Thursday, January 12, 2006 9:20 PM CST

Good news! I think we've figured out what is going on with Charlie. At least I hope this time we have it figured out. He seems to do really well for about a month on any new changes we have in his formula and then bam, the GI issues. Well, I'm hoping that this time it works for awhile. He lost more than a pound and a half and so we have a lot of ground to gain back. He's so skinny as it is. We are going to keep our appointment with the GI doctor though - just to rule out something internal.

Not much else is going on. We are just anxiously awaiting the new van so we can take Charlie out and about in his power chair. I have to run - kids are yelling ;0)

Monday, January 9, 2006 3:12 PM CST

Another belated update and I have no excuse. It’s been a long week though. Charlie has been having GI issues again, and I’m so frustrated trying to figure out how to make Charlie feel better. He is such a GREAT kid and never complains even when he’s in so much distress. He is always back with a smile and a “hi” whenever we get the pressure out of his stomach. We are going to see a GI doctor on Monday down at Children’s Mercy. I hope they can tell us if there is something other than diet that is causing this.
Finally, today he’s a little better than he has been, so maybe I’ve figured the diet part out, but I still worry that something is going on.

Other news is that we have purchased a conversion van. We are having it built down in Texas straight from the conversion place. It will have lift in the rear so we can take Charlie’s power chair with us. We look forward to being able to take Charlie to the mall this winter so he can continue to practice. We might even have it as early as end of next week!

Not much else is going on. We were enjoying the nice Winter weather we’ve been having this last week or so, but know that it won’t last.

We still pray for all of our sick SMA friends as well as our dear friend Bill S who is still in CCU fighting to get better from West Nile Virus.

Blessings and hugs to all of you.

Sunday, January 1, 2006 9:38 PM CST

Ok – It took me several days to finish my update. So now, it’s officially the New Year! We had a very quiet New Year’s Eve and no one in the house even saw mid-night. Not to say that Charlie didn’t wake us up plenty after that. We hope everyone had a wonderful New Years and look forward to a healthy happy 2006.

Friday, December 30, 2005
Hi All - Merry Belated Christmas and Almost Happy New Year! I can't believe how the year has flown by - at least it has for the kids and me. We just got home from Minneapolis last night, so I'm playing catch up. We had a GREAT visit with John's parents and his sister Mona and her family (Rick, Anna and Sarah). We got into their house a week ago Friday about 10 p.m. It was a long trip up because Charlie wasn't enjoying the ride this time. He was pretty fussy for the last couple hours -- really wanted "up" (meaning out of the car seat). Both Lily and he finally fell asleep about 9:15 - so just in time to get there - typical don't you think.

Saturday was Christmas Eve. It was funny because with it being only our family and John's parents, it just didn't have the Christmas feel. There weren't enough kids and adults hanging out. Mona and her family didn't get back to town until Monday - -so we spent Christmas Eve and Christmas day without them. The kids opened a few presents from Grandma and Grandpa after church on Saturday and that was the start of the gift opening-athon. We put the kids to bed later than normal and waited for Santa to bring the gifts for the kids. Sunday, we all got up and let the kids open all the Santa presents (he brought some to MN and left some at our house in KS). It was fun to see them tearing into presents. That afternoon, Lily, Grandma, Daddy and Grandpa went to see a movie while I stayed home with Charlie so he could nap.

Monday was a busy day. We got rolling early and went over to see some friends who have a daughter with SMA. We met them when we went to the first FSMA conference right after Charlie was diagnosed. Anyway, Sophia is a month older than Charlie. We had a great visit. Charlie and Sophia played and watched each other :0) Charlie would try to hold Sophia’s hand, but she was playing coy. Sophia has an 11 month old little sister, so Lily had a good time playing with her. We watch Sophia expertly maneuver her power chair. She has the same one as Charlie but has had it a little longer. She is amazing in it. It was a fun visit but too quick. And did I mention that there were gifts to open there?

When we got back to Grandma/Grandpa’s Mona, Anna and Sarah were there. The kids played until Rick got there and then we let all the kids open the rest of the presents. Lily, Sarah and Anna went sledding behind Grandma’s house for a while too. I didn’t get Charlie bundled up so I feel bad. But he was napping so didn’t know what he missed.
Tuesday morning we met some high school friends of John for breakfast (Matt and Susan Keeler). It was nice to see them. They are expecting their first child this year, so it was fun to talk about all the excitement for them. Tuesday afternoon John’s cousin and his family stopped by. They have four girls ranging from 14 – 22! The kids were nice enough to play the new princess game with Charlie and Lily. It’s funny to be around a couple that are so close to our age, yet have kids who are 14-22. We’ll be in our late 50s by the time that happens to us! It was so nice of them to come visit. They live about 4 hours away. It was fun hearing stories of the young cousins (John, Donny and Mona and their siblings) growing up together.

Wednesday morning, John got up to go pick up Anna and Sarah so that they could play with Lily and Charlie all day. When he got home, an old friend of his stopped by (Heidi). It was nice visiting with her - -oh and did I mention there were gifts to open? Then later that evening two other friends of John’s (John and Laura Vonhoff) stopped by for a visit. Did I mention there were MORE gifts? I know John really enjoyed being able to see some high-school friends, as most trips are so short that we can’t fit it in. That evening we went to dinner with everyone (Mona, Rick and the girls, Grandma and Grandpa and us) Charlie again so enjoyed his special attention from Anna. We were sad that the trip was almost over.

Thursday was the day we headed home. After a nice breakfast with the family we hit the road. We were supposed to swing through Waterloo, Iowa to visit my Grandparents who are 94/95. But my aunt told us that the flu had been going around the house and all the Sure Care workers too (my grandparents still live at home, but have 24 hour care). So we thought it was best to head home.

We got home early enough to open the rest of the presents that Santa brought. I think the theme of the week was present opening! We still have Grandma Ruisch (my mom) and my brother’s and their families’ presents to open. This is the longest of present opening season ever!
Friday, Maggie (our dog) came home. She had a nice big gash in her side. Apparently, another dog while playing bit her at the boarders – or so our vet thought. So we had to get stitches. We also went to the pet store to pick up a present Santa asked us to buy. A guinea pig! It’s for Lily, but Charlie loves it too. We are keeping low key for a while to let “Sophie” get use to us. I’m still not quite sure what we were thinking. Another animal to take care of for mom ;0)

That’s about it for the update. Sorry for the long winded story, but wanted to share our holidays. We hope everyone had a wonderful Christmas filled with family, love and friends. I know we did.
It’s so hard to believe that it’s almost New Year’s!

Thursday, December 22, 2005 6:03 PM CST

It's been a crazy day today. We have to change equipment providers because our insurance company is changing providers. They had to come out this morning and bring us all new equipment (our cough assist, pulse ox, bipap, feeding pump, suction machine, and oxygen tank). Luckily, we can bring our old equipment up to MN tomorrow. I was so worried that if something happened we'd be SOL. I'm a little bummed because we were given a different brand of pulse ox. We originally had this brand before getting the one we love and have to give back. I really like the one we had becuase it has a long battery life if we are travelling and it seems to be a lot more accurate. Now, with the one we have from the new company, it only has a 4 hour battery life. It will be harder on our long road trips now :0( But overall, it hasn't been that bad of a changeover -- just time consuming.

Lily and I were at her friends house all day 11-2:30 for a Christmas Tea party with 7 other girls and their moms. It was fun, but put me way behind on packing. As you can tell, I'm still procrastinating now. I'm just not mentally ready for a road trip. Get me packed and I'll be excited to be on the way!

I won't be able to post until we get home (only can post on the www.caringbridge.org/ks/charlie site). I need a special program to change this one. So, I'll catch up later.

We hope everyone has a wonderful, Merry Christmas with family and friends. Lily and Charlie can't wait to sing Happy Birthday to Jesus on Christmas morn.

Tuesday, December 20, 2005 9:05 PM CST

Ok -- I'm so bad these days about updating. But I guess no news is good news :0) We are all doing well. Charlie has had a great week with no stomach issues. I think we'll be changing his diet often to fight off the stomach distress. He's gaining back his weight that he lost so we are happy.

We have been doing lots of fun Christmas activities. My mom and I took Charlie and Lily to the mall to meet Santa. Charlie was so excited and couldn't stop smiling. When we got there, Santa was "napping" so we were first in line and waited about 15 minutes. When Santa showed up - Charlie was NOT sure at all about the strange man with a big beard and a red suit. He wanted NOTHING to do with him. Of course, the mean mommy that I am -- he was made to sit on Santa's lap with Lily. I think we captured cute photos of the event. If you ask him now, he'll tell you he had fun -- but he is lying ;0) Lily wanted to sit on Santa's lap again so we went back. But Charlie said NO!

Charlie, Lily and I decorated a gingerbread house the other day. The kids had fun and I think the house is beautiful :0) Lily ate so much of the decorations that she had a tummy ache. It was fun. I'll be sure to add photos to the www.oursmaangels.com/charlie site since I can post more there.

On Saturday, we went to our friend Brett's (he has SMA too) birthday party at the bowling alley. Lily and Charlie had such a great time. Charlie kept asking for the ball -- we will definitely have to take him again. They have a ramp that you can roll the ball down, so even those kids in wheel chairs could have fun bowling. It was a fun afternoon.

We are heading up to MN on Friday to visit John's parents for Christmas. We had to tell Lily that Santa will come to both places - Charlie doesn't get it yet so he isn't worried.

I better sign off now, we say many prayers to all the SMA friends we have who are sick or under the weather. Too many too soon - we hope the rest of the cold/flu season is better.

Our prayers are still with our dear friend Bill S who has been in CCU since early November with West Nile Virus. We hope that he continues to get his strength back and can get home to his lovely wife Linda! I'm sure she's tired of sleeping in a chair in the CCU. . .

God Bless, Merry Christmas and all . . .

Monday, December 12, 2005 8:42 PM CST

It's been a week since our last post. On Thursday, we lit our candle at 1 p.m. our time to honor Angel Morgan. Her services were in Virginia Beach. From what we've heard it was a beautiful celebration of her life. She touched so many people in the three short years she was on earth with us. We love you and miss you, Morgan!

On a happier note, we had a visit from our friend Kristin (Cole's Mom). This is the first time we've met her in person, but we've been online and phone friends for more than a year. She lost her son Cole last year right around Thanksgiving to SMA. He was 27 months old. I was laughing that it wasn't really me that Kristin came to visit -- it was Charlie (and Lily too). Charlie had so much fun having total attention from another adult. He was beat by Sunday morning and even slept in. It was so wonderful seeing Kristin all weekend.

We also got to see Brett and Kristal. They came by for dinner on Saturday night to see Kristin. They brought their brand new puppy "Patch" with them. Lily and Charlie were immediately in love with the puppy. It was cute. I'll have some photos on the www.oursmaangle.com/charlie site soon.

Better sign off and get some sleep. Hope everyone's holiday season is going well. We are almost ready for Christmas here. Most of the shopping done and our decorations are up. God Bless!

Sunday, December 4, 2005 8:48 PM CST

Our hearts are breaking. Our dear friend Morgan S. joined the Angels in Heaven in the early hours of this morning. Our love and prayers go out to her family. Morgan was a beautiful angel on Earth and it was our privilege to have had the opportunity to meet her this summer at the SMA Gathering in Virginia Beach. God's speed, Morgan, into the arms of Jesus and our Lord.

I can't imagine the pain Stacy, Bill, Zeke and Clayton are feeling because it is crushing us. Please keep Morgan and her family in your prayers. This was a sudden and unexpected loss. She hadn't been sick . . .(other than the awful disease we all know as SMA). She was a true fighter and a beautiful girl.

Friday, December 2, 2005 9:01 PM CST

Well, we need prayers once again for Charlie. I can't figure out why we keep having stomach issues. We had been doing great on his formula mixture. He was getting the right amount of fluids and calories. For the last few days, before today, he just had mild burping -- then starting today, it's been bad! He is in a lot of discomfort and has really bad "burps" frequently. It breaks my heart. He tries so hard to be happy even though he's in pain. We have him back on just Tolerex and water for a few days to see if we can clear it up again.

We also had bad news. We FINALLY got our system running smoothly with the RT and the provider of our enteral and respiratory supplies. Now, our RT quit and we are having to change companies. I guess the corporate office bought back the franchise and so they can't work with us any more. So, now we are back to square one! It's a big bummer.

We've got several sick SMA friends. I hate this time of year. Our prayer list gets longer and longer. I'll keep you posted on Charlie, but say a few prayers for he and his SMA Friends. God Bless!

Thursday, December 1, 2005 2:46 PM CST

Ok -- I've been bad, but things have been good. We've been having a great fall. The weather has been on and off really good so we've been outside playing a lot. It's so hard to believe that we are less than 4 weeks for Christmas!

We had a wonderful Thanksgiving at my Mom's house with both of my brothers and families. Charlie and Lily had a great time playing with their cousins - I'll post some cute photos of them too. Both kids are having a good fall/early winter so far. Lily's been fighting a cold, but Charlie is staying healthy. Charlie is still doing great driving. He loves his new chair and I'm sure he'll be an expert driver in no time.

We are planning on heading up to Minnesota for Christmas. It will be fun to see John's sister and her family as well as Grandma and Grandpa. I just wish it wasn't so darn cold up there! -- I'm not much for the snow and ice :0)

As you can tell, I don't really have much to say, so I'll sign off. I'll be sure to keep posting photos.

Saturday, November 19, 2005 11:46 AM CST

Well, we officially kissed the 80s good-bye. It was cold enough earlier this week that we had SNOW. It came down pretty hard, but didn't stick at all since it had been too warm. Today is going to be 50 and that's going to feel warm compared to what it was :0) But I can't complain, we had good weather until now.

We are still struggling to figure out what kind of van we want to get. I think I have too high of expectations that I can get one that has everything that I want. I was hoping to keep the power chair in the rear and not lose the 3 rows of seats. So far, that means we'd have to get the extended van to do that. Not sure I want a truck that is a FOOT longer than my Suburban! Yikes! But, as you know, you'll do whatever for your kids.

Charlie still continues to amaze me. He and Lily sing so many songs in the car - I'm always amazed at his memory. You might not always be able to understand him, but he knows the words. And he's saying his ABC (when he wants) as well as counting to almost 20! He is a smarty pants and we love him. Lily is, as always, a GREAT big sister.

We have at least two SMA families coming over tomorrow to watch the Extreme Makeover: Home Edition. We invited the media, but I never heard so I guess the Chiefs take president over local families suffering from the same disease that is being showcased on Extreme... It will be a fun gathering regardless... I can't wait to see all the neat things they are doing to make the house assessable for this little 6 year old with SMA Type II.

$$ Update! It's up to more than $3,500 - keep it coming.

Well, better run. Big hugs to all. And prayers for several SMA families with Angel Days (the day their SMA child passed) around this time as well as a family who is in PICU with their little 5 month old with SMA who suffered a crash and is now faced with irreversible brain damage. Also, prayers for good friends Linda and Bill. Bill has been in the CCU for weeks fighting for his life after getting West Nile Virus. He finally awoke from his coma, but they aren't certain how much/if any brain damage was done. God please wrap these families in your loving arms and bring them comfort and peace.

Wednesday, November 16, 2005 9:40 PM CST

What a week and a half we've had. We had so much fun with the 80 degree weather. Charlie is doing GREAT in his new power chair. It's been fun. But our time outside driving is over I think -- at least until Spring. It's freezing now. Crazy that we went from 80s to 20s in less than a week! So I guess we really need to work on getting Charlie's chair in a car (new van unfortunately) so we can go to the mall or out to places where he has more room to drive.

Both Charlie and Lily have been so healthy so far. Big prayers for a good winter with no illness.

We had a great day today. It was my birthday and Charlie sang Happy Birthday to me this morning all by himself! It almost made me cry. Then this afternoon, Lily and Grandma made me a cake. They all sang to me after dinner. I have it on video that I'll try to post to the other site. I love hearing Lily and Charlie sing together. They both love it so much. They will both yell "no mommy" when I try to join in!

Not much other new going on. We can't believe it's almost Thanksgiving! And Christmas isn't that far away either.

Hope everyone is having a great time planning Thanksgiving with family and friends.

Big Hugs!

Monday, November 7, 2005 11:44 AM CST

We have been having the BEST weather her lately. It's more like spring than Fall. It's been so nice that we've had Charlie outside in his new Power chair every day. He loves it so much - he just sings and sings. He is getting better for sure, but still has a long way to go. Both kids are staying healthy although Lily has a little cold. We will just try to keep her away from Charlie and his toys - which is next to impossible :0) You'd think she doesn't have enough toys of her own.
Today, Charlie has an appointment with the MDA clinic here in town. I'm going to go one more time just to stay in the system, but not sure we need both KU and Children's Mercy. I'm going because I thought it might be a great way to show someone how Charlie has his issues with his tummy. We are in the middle of trying to figure out what formula concoction works for him. I think we are going to battle with this always.

Great news is that the $1 campaign has raised more than $2,700 so far. If you haven't heard me talk about the $1 campaign, just check out www.oursmaangels.com/charlie.

Well, I better read Charlie some more books -- he's been yelling at me for the last 5 minutes. Be sure to check out the photo page. I'm adding new videos of Charlie driving soon.

Wednesday, November 2, 2005 8:50 PM CST

Ok -- I'm way behind in posting. We've had a busy few days. Sunday was John's and my 6th wedding anniversary and Monday as you know was Halloween. The kids had a great time. Lily was Sleeping Beauty (not Cinderella I was wrong) and Charlie was a Crocodile :0) They both went trick or treating around the neighborhood, although Charlie wanted out of his costume so he and I came home early. It was a beautiful evening. We were so afraid it was going to be raining since it rained all day until about 4. Thank goodness for small favors. I'll put some photos on my www.smaangels.com/charlie site since I can post more photos there.

Earlier on Monday, we had the best Halloween present there could be! Charlie had his new power chair delivered. He looks so wonderful in it and it supports him so much better than the other/first chair we had. He loves it. I think he'll be a pro in no time. I'll post videos on the other site too if you want to check it out.

Tuesday was my little brother's birthday and today was my mom's birthday. So, we all went out to a Japanese Steak house for dinner. Charlie was so thrilled by the big fire they do before cooking. He was so smiley and wide-eyed. I'm glad he was able to see both our cook top and the one across the way being lit up. His smile was contagious! What a boy -- he loves running into things in his power chair and he loves the big fires.

Well, I'm off to get some photos downloaded. Charlie and Lily are both doing so well, although poor Charlie is having some stomach issues again. I think we'll have a constant struggle with that :0(

Big hugs!

Friday, October 28, 2005 9:58 AM CDT

It was such a beautiful day here yesterday, in the low 60s. Charlie, Lily, Grandma and I decided that we couldn't miss out such wonderful weather so we headed out to Deanna Rose Farmstead. Charlie and Lilly both love it there. They can feed the goats, fish, ride ponies, take a hay rack ride, do some mining and more! I took some great photos of them and will post them right now. It was such a great day. This is my favorite time of the year -- if we could just bipass winter and have fall, spring and summer, I'd be in Heaven :0) There is one photo of Charlie covered with corn. They had a big horse trough filled with corn that the kids were playing in. They had buckets and shovels to use. Charlie adored being in there. He didn't want to get out. He kept saying "gain" "gain" for again and again. He was so cute. Makes me want to make a baby pool of corn in the basement so that he could play in it all day! Lily didn't want to get off the tractor, so all and all it was a fun day.

On Monday, Charlie had his first wheelchair fitting. It was awesome. He loves it and drove it backwards and in circles right away. He thought it was so fun. We might have it next week. We have a short video from our test drive. I'll try to post it this week if you want to watch it. It will be on the www.oursmaangels.com/charlie site along with the photos from Thursday.

Charlie and Lily are excited for Halloween. Lily is going to be a princess - Cinderella and Charlie is going to be a crocodile. He couldn't decide whether to do that or be Blue's Clues. It is suppose to be warmer than it is now -- so Charlie and Lily should both be able to go out and trick or treat. We'll take lots of photos.

Friday, October 21, 2005 4:57 PM CDT

I just heard from Laura at SMA Support that she's received $1,379 from the dollar campaign. What an amazing start from just sending a simple email. I hope to keep this going. If you are reading my journal for the first time and don't know what the dollar campaign is, check out all the information on the main page. And then if you feel compelled, grab a dollar, $5 or whatever you want (we even got a $100 bill). Write SMA Hero Charlie on it and send it in. And then, do SMA and Charlie the biggest honor and copy the message and send it on to your email list. The more people who learn about the disease is the best way to help Charlie and all of the other SMA Heros in Heaven and here on earth. A BIG Thanks to everyone who has contritubed. I know that there are a lot of bills rolling around out there with Charlie's name on it :0)
Charlie is doing great. He hasn't had any problems since Sunday so we are once again just cruising along. We go in on Monday to have our first fitting for Charlie's new wheel chair. How exciting is that! Lily is still doing well too. She is a wonderful daughter and big sister. We are truly blessed with two incredible children.

Sunday, October 16, 2005

We had our first really big scare with Charlie tonight. He woke up fine this morning. Barely any fever at all. He was happy as could be and wasn't stuffy or congested at all. We put him down for his nap and then left him with a babysitter while John, Lily and I went to Lily's soccer game. We got home and he was still sleeping. When he woke up, he was cranky and his heart rate was elevated. I coughed and suctioned him but got nothing up. Brought him downstairs and he was still really cranky and it seemed like his heart was racing. So John and I took him back upstairs and put him on pulse ox. His O2 was in the mid 80s! Too low and his heart was RACING! We coughed and coughed and coughed him to bring his O2 level back up. John was able to get a ton of stringy white stuff up. I'd suction during the breaks and then John would suction more. Charlie wasn't happy and was fussing the whole time - which he doesn't usually do while we cough him. After about 15 minutes, Charlie was better. His O2 was back up to around 96 or so. It was very scary and we have no idea what caused the gunk in his throat/lungs? We are so glad that we have all this medial equipment so that we can help him without having to go to the ER!

Wednesday, October 19, 2005 2:08 PM CDT

Well, Charlie has us snookered again. He's been totally fine every since Sunday's incident. We won't question it, we'll just be glad that he is well.
We were very sadden to find out yesterday that another little girl, 5 month old Hailey, joined the angels in Heaven yesterday. I'm in shock. This was a family and little girl whom Kristal and I have been trying to help. Her mommy contacted us and we were helping her get up and running on the NIV protocol and she was wanting to try the AA diet. It always hits so close to home. I never met Hailey or her mom Allison, but they were part of my family. Please add them to your prayers.

Saturday, October 15, 2005 2:04 PM CDT

Asking for prayers for Charlie. Today, we went to meet my brother and a friend for breakfast. Something we do quite often. Lily, Charlie and Daddy were running around while we were waiting to get seated. Usually, Charlie giggles and laughs and loves it. Today, he started crying -- he was really fussy. Even after burping and getting to our table, he wasn't himself. Asking to "go" over and over. I left with him and Lily and John were going to go home with David. I drove for a few minutes and Charlie burped again and then seemed happy. He asked to go see Daddy and Lily. So, I thought that he was okay. We went back and ate breakfast. He got fussy again during the meal and wanted to go home. By the time we got him home, we took him up and put him on the pulse ox to see how he was doing. His heart was RACING. Between 180 and low 190s! Not normal at all. We took his temp -- 101. So he is definitely coming down with something. Even after Motrin - his heart rate and temp are high. I think I'm going to alternate Motrin/Tylenol and just watch him like a hawk. He is napping now on BiPap. Hope that this is a 24 hour bug and not something bigger.

Friday, October 14, 2005 11:32 AM CDT

Howdy. Another long stretch without an update. Charlie is doing great. He is healthy and happy. Both he and Lily got their flu shots on Monday. So we hope that is one thing that doesn't hit our house this year. It's been a bad couple weeks for our SMA family. We've lost four "friends" to this horrible disease. Our thoughts and prayers are with their families. It is always such a horrible reminder of just how awful and truly devastating SMA is. We hope that this stretch of losses is over for a long long while. Please remember Austin's, Rhine's and Christian's families in your prayers.

On a better note, the Power of One (send a $1 or more) campaign to SMA Support is growing and bringing in loads of bills. The total for just one week is $1080! How exciting is that. If you would still like to send a $1, $5 or more, it's not too late. Just scroll down on the main page to see the directions. And pass the word along to all your friends. We'd love to see how far this can grow!

Charlie is still growing like a weed and loving his PT, OT and water therapy. It keeps us jumping, but he loves the attention. Lily is still doing great in school and has a busier social life than John and I do :0) Hard to believe how fast our kids are growing up. We'll write more later. Hugs!

Friday, October 7, 2005 8:53 AM CDT

We got some great news yesterday. We were approved for Charlie's power chair! If luck is on our side, he'll have it before Christmas! We are very excited for Charlie. On the health front, Charlie's cold seems alot better today. I'm hoping by the weekend it will be gone. He's so tired of being sick.

On another note, I heard today that in mail Laura with SMA Support opened three envelopes with money in it! Two for Charlie and one for our good friend MJ who also sent out the email to her family and friends. it will be fun to see how much money can be raised with just a simple email being forwarded along. And how many people will become aware of SMA. I'll keep you posted.

Ok Just got another update! We have gotten $545 dollars in the mail for Charlie and the other SMA Angels out there. This is exciting. Check out above how you can add to the growing pot to support the kids and families with SMA. Hugs!

Monday, October 3, 2005 3:39 PM CDT

We had a busy weekend. John's sister Mona and her family (Rick, Anna and Sarah) all came in for the FSMA Walk N Roll. They didn't get in until 1 a.m. on Friday night and left Sunday at 11 a.m. so it was a quick trip for them. But we are so thrilled and appreciative that they traveled so far to support Charlie in the walk. I've raised more than $1,400 and counting now, so I'm happy.

As for Charlie. He's still hanging in there. Unfortunately, he still has his cold. I swear I could suction his nose every 10 minutes and I'd still feel like I was getting out a mountain of phlegm. Poor guy sees me coming now and says "no suction, no suction". He feels so much better when we are done, but loves to say "ALL DONE" when I finish. I'm sure he's getting so sore. We are just lucky that it hasn't turned into something worse, but I know both Charlie and I will be so excited to keep the coughing and suctioning down to twice a day again.

I also sent out an email to all of our family and friends who I have emails for. The race was to support FSMA - an organization whose main focus is research. We are all for that, but know that we also need to support the group SMA Support who offers support for families living with SMA. The email is below and if you are reading our update -- I'd love for you to email me for a copy -- and send it on to all of your email lists!

Hi Friends & Family --
We've all witnessed what a single $1 can do if people are willing take a few minutes and mail it. Just think of all of the yellow bracelets that you see around - I hear Lance Armstrong raised more than a million for cancer research. I'm going to try to do the same :0) Ok -- maybe not a million, but heck what about $1,000 or $5,000 or even $10,000. I'm asking you to give a $1 -- not for a yellow bracelet or any bracelet at all but just for the knowledge that you will be helping families and kids living with SMA -- helping them get the proper equipment, medicine or other support that insurance may deny. Or maybe it will just be used to send the kids something to brighten up their day or even to help pay for some of the growing piles of medical bills. Or God Forbid, help the parents pay for the funeral expenses of the child they lost to this disease.

If you feel like you can spare your dollar -- here is what I am asking you to do:
1. Get your $1 (more if compelled)
2. Write SMA Hero Charlie somewhere on that dollar (or any other person who is living or has lived with SMA)
3. Put it in an envelope and send it toSMA Support Inc.
PO Box 6301 Kokomo, IN 46904-6301 and last but not least
4. Forward this email on to all of you family and friends.

Where is your money going?
SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. You can learn more about SMA Support and SMA by going to www.smasupport.com

Thanks and God Bless! Kim Sykora

Thank you to everyone who has already told me that they are sending in their bills (some dollars, some fives, tens and even a hundred dollar bill!) I'd love to see this grow. Get the word out about SMA and help the families who are dealing with this disease.

Ok -- I'll sign off now. I'll post photos so check them out. Hugs and blessings to all.

Wednesday, September 28, 2005 5:38 PM CDT

Well, we've got the first official cold of the season going. Charlie is handling it pretty well, but we are definitely having to cough and suction a lot! We are hopeful that it's not going to go into his lungs. So far so good though. We are so thankful that we have all the equipment we need to help him get through this cold. Will keep you posted. We are hoping that he'll be well enough to go to the walk this weekend. He has so many friends walking or running for him that we know he'd love to be there. We will keep our fingers crossed, but most likely Charlie and I will have to stay home.
Everything else is going well. We are trying out a new power chair for Charlie tomorrow. Then we'll just have to wait to see if we can get it approved. Charlie has been having problems with his current chair. It doesn't support him enough in either the power base or the manual base. Anyway, we are excited to see how he'll do if we can get him a new chair.
I better run get dinner.

Sunday, September 25, 2005 8:34 PM CDT

Well, once again I'm behind catching up. Maybe it's because we've been so boring that we have no news... Charlie had his bi-annual appointment with the Rehab clinic here at Children's Mercy. He is doing great. The only thing that got me a little upset was meeting with the orthopedic surgeon. We had X-rays done of his hips and back for a baseline last May. When the nurse called with the results, we were told that his hips were definitely sublex (Not sure how it's spelled, but meaning out of socket) and that his hip sockets weren't really formed. This wasn't unexpected since he doesn't stand and hasn't ever besides in his stander. And then we were also told that he has a 10 degree scoliosis started. We felt quite relieved that it was so minimal. Well, I wanted to talk with the orthopedic surgeon to find out about the X-rays and what we should start doing. He looked at the same film from June and told me that Charlie has between a 22-29 degree curve!!! Not sure how the first look could have been so wrong. I know that scoliosis is something that we will have to deal with since Charlie has no muscle help to keep it straight, but I didn't think it would be so much worse than the 10 degree we were initially told. So, now we will start seeing Dr. Sinclair (the ortho) twice a year and get X-rays as well... then we will go from there. If the curve gets worse faster, we'll have to figure out our game plan. Other than that, he is doing GREAT! We couldn't be happier. He's so smart and staying so healthy. We are so proud of him.
Lily started soccer last weekend. It's too funny watching 4 and 5 year olds playing soccer -- or should I say mass confusion around a ball. There has been at least one good boy in each game who monopolizes. I bet they have older siblings who play. Lily is a little behind, but I'm sure she'll catch on. Charlie loves yelling "go Lily" on the sidelines or cheering when anyone cheers --whether our team moms and dads or the others -- he is unbiased.
Next weekend, is the big SMA Walk and Roll. This will be our second year to participate. John's sister and brother in law are coming in to walk with us with their kids. Lily is so excited to see Anna and Sarah. I hope the walk is a big success. I already have more than $1000 in sponsorship and so many of our friends and John's co-workers will be walking again. If anyone reading this wants to sponsor me -- just send a check to me made out to FSMA- KC Area Chapter. Or you can sign up to walk at http://www.roelandpark.net/roefest/runwalk/raceinfo.htm
Well, I better get to sleep -- I'll try to update photos soon. Hugs to everyone.

Wednesday, September 14, 2005 2:06 PM CDT

Howdy! We have had a busy last week. Friday night, Charlie, Lily and I went to her school festival with Grandma. Lily had a blast running all over the place and Charlie enjoyed watching all the kids run around. He also loved playing a few of the games. He kept wanting to go back to the duck pool. I'd ask him which one to pick up and he'd say yes or no. We "won" every time (they let you cheat and help you too). He also got to play the fishing game, but wanted the duck pool more. Charlie and Lily got their hands painted. Charlie kept "flying" his butterfly. It was too cute. I'll post photos of the evening soon on the other site so click see other photos.

Then on Sunday, we had Charlie's and Lily's birthday party. It was out of the barn where we keep Harley (our horse), so I didn't have the mess here :0) There were 30 some kids and at least that many parents. We had horse rides, a face painter and a moon jump thing. Charlie and Lily had fun. I rode with Charlie and he wasn't so sure about that. He had more fun feeding the horses carrots. We also were able to do the moon walk before anyone came. He wanted that more and more. Then Charlie got a "Nemo" painted on his face. He kept holding up Grandma's mirror to see it. He thought it was so fun. Lily had a blast running everywhere with her friends. It was a fun day, but I'm still exhausted. I have great photos from that day as well that I'll post soon.

The only bummer to all of this is that I thought I had Charlie's g-tube issue taken care of, well, it's not! We are going to have to figure it out. I'm afraid that maybe he doesn't do well with juice anymore. I'll start the whole taking things out of his formula thing again.
On Monday, we went to lunch with two other SMA families (Kristal and Brett and Claire, Lauren and Natalie Gibbs). We went to eat before the check presentation ceremony from the fundraiser we did last May. We raised more than $19 K for FSMA - KC Chapter. I had also given Natalie almost $2000 earlier that was directly to FSMA-KC Area Chapter -- so we raised more than $20 K total. Not bad for our first year :0) I have great photos from that too. The kids and Natalie and Kristal were also on the news. You could only see me behind Charlie from the waist down. They showed a little clip at the 5, 6 and 10 news that evening. It was fun seeing the kids on TV.

I better run so I can get some photos posted. Hope all is well with everyone else.

Thursday, September 8, 2005 2:37 PM CDT

Hello – once again, I’m behind on updating. Both Lily and Charlie are having their big birthday celebration with families and friends this weekend (I know 2-3 weeks after their bdays, but it just worked out that way)… I’m busy trying to get things done for that. It’s going to be embarrassingly large :0) Next year, we’ll have to figure out something else.
It’s been a weird couple of months for Charlie. I haven’t said anything, but he’s been having GI issues and its been getting progressively worse. About 2 months ago, Charlie started having gas issues - what we call burping problems. With his Nissen Fundoplication (for those who don’t know what a Nissen is http://www.geocities.com/fundofamilies/description.html ), he can't burp. He will start sort of gagging, sometimes even drooling out the side of his mouth. We immediately open up his g-tube to vent him and he has really bad "burps". If Charlie couldn’t push it out, we’d have to help him by pushing on his tummy. It was getting steadily worse and was happening 10-12 times a day and all night too. We couldn’t figure out what was causing this. We hadn’t changed anything in his formula that he gets. But finally, two days ago with the help of several of the ‘diet guru moms’ we decided to take all the additives out of his mixture and just give him Tolerex and water. (Tolerex is the basis of the formula we give him. It’s an adult amino acid formula) I was hoping that doing that would immediately solve Charlie’s issue. It took a whole 48 hours, but I think he’s better. I’m going to knock on wood now, but he hasn’t had to “burp” all day. I am hoping that this will continue. I will start adding back his baby food and supplements so I can get his calories up. Please pray that he’ll continue to do better. It was so sad to watch him have his “burps”. He would be so uncomfortable – so much that he couldn’t talk. But the second he’d get the air out – he would be happy and smiling.
I had a long talk with another SMA mom last night. It’s been hard trying to figure out how to make Charlie better. We’ve been so lucky that all we’ve had to do since we found out that Charlie has SMA was follow the “normal” rules and procedures to keep him healthy and well. This problem was the first time we’ve had to try to figure out what works for Charlie. I am so grateful to have this army of moms who are living with SMA to help us.
I’m hopeful that we’ve kicked this problem in the hinny. Hugs and blessings to you all.

Friday, September 2, 2005 7:41 PM CDT

Thursday, September 1, 2005

I can't seem to drag myself away from CNN and Fox News. The devastation on the gulf coast and in LA is amazing. It makes anything that is up with us so irrelevant. But I'm going to update anyway. We are all doing great. Lily had a fun birthday yesterday and Charlie of course, loved singing Happy Birthday once again. He's our singer! It's fun to have a 2 year old and a 4 year old now. They love each other so much and have so much fun together. It's great. We went to the doctor today for their 2 and 4 year check up. Lily had to have her Polio shot so she wasn't happy. Charlie lucked out and didn't get one. Now it will just be October for flu and then Charlie will start his RSV shots which I HATE for him. But they help keep him well... Both Lily and Charlie are in the 90++ % for height. The doctor thinks Lily will be 5' 8" which I'd be happy about. Charlie is just so long now. He isn't a baby anymore...

Lily has the start of a cold though. So let's pray for a quick cycle and hope that Charlie stays healthy. I can't believe how early the bug season is starting this year. It's going to be a long fall/winter I think.

Shoot us an email to say howdy or sign the guest book. We miss hearing from everyone. Hope everyone and their families are well. Prayers for the victims of the hurricane. God Bless.

Wednesday, August 24, 2005 12:25 AM CDT

We have been home since yesterday. We had a great trip to Virginia Beach. We took 2 ½ days driving down there. It ended up being 1,200 miles. Luckily, both Charlie and Lily love to travel. I mean they love watching their videos. It was so funny. Charlie fell in love with Dora – that’s all he asked to watch. He’d get so mad when it was Lily’s turn to pick. I don’t think he’s a Sleeping Beauty fan.

We got to our condo in Sandbridge on Saturday. The place was great. It had a lot of space and a wonderful pool with a zero degree entry. It was so nice to play with Charlie in the water when we could sit him on the bottom and he could play – or we’d let him “walk” in the right depth with his weights on. It was perfect. Charlie and Lily couldn’t get enough of the pool. Our only complaint would have to be the beaches. It was beautiful, but Lily’s favorite thing to do is look for seashells. And there was none. So she was a little disappointed. We had a nice relaxing week at the condo. Watching movies, sleeping in, taking naps (well sort of) and just hanging out with the family. We did spend one day at the Virginia Aquarium. Charlie loves fish and watching them up close. It’s one thing that I wish we had here in KC. Then we spent another morning at the Norfolk Zoo – it was small but nice. The rest of the time was spent either in the pool or just relaxing.

On Thursday, some of our SMA Support Family had arrived in Virginia Beach for the SMA Support Family Gathering. I went for a quick visit to finally meet in person - my dear friends MJ and Brenda and I also got to meet Brenda’s mom Janis as well. It was so wonderful to meet these people in person! I feel like I’ve known them forever and finally getting to hug and pest and annoy MJ was worth the wait!

On Friday, We all went to the hotel where the Gathering was taking place. It was such a trill to meet so many of my SMA Family -- people whom I’ve been online with for almost a year now. These are the people who give me such support and great advice and ideas for Charlie. We had a great lunch and then went on a fun boat ride. It was just so wonderful to meet all the people. Ange, Alyssa and her family were incredible. I threw Charlie at them when we first got there. Ange’s son Jacob passed away 6 months ago. He would have been two on Friday (the first day we were there). He would have been two days older than Charlie. I’m so glad that they were able to make it all the way from Canada. They are such a wonderful, warm, caring and fun family. Charlie ate up all the attention that was bestowed on him. I can’t get into all the people that we met, but everyone was incredible. And I loved meeting all the SMA kiddos and their siblings. What a wonderful group of people. I can’t thank Laura Stants (the founder of SMA Support) and Stacy Saville (who lives in VB and helped organize the event) enough for bringing us all together for the weekend. I’m already anxious for next year.

Saturday, we had another great lunch, a beautiful butterfly release and the annual Candle lighting in honor of all the SMA Angels in Heaven and here on earth. It was a wonderful day of family and fun. We had birthday cakes for Jacob and Charlie after the luncheon and then a DJ played while all the kiddos laughed, had their faces painted and played. I was so sad that Charlie had to take his nap – but he was beat. We didn’t want him to miss the candle lighting and the butterfly release. Sunday came all too soon. After a great breakfast with MJ, Brenda and Janis, we said good-bye in the lobby for hours! And finally hit the road home around 1:00. Monday! On the Road, we sorta tried to Celebrate Charlie’s SECOND Birthday. WE made sure we were at a hotel early enough for him to swim – his favorite thing to do. We sang and sang Happy Birthday over and over again. Charlie joined right in! We are so proud of him and he continues to amaze us with his strength and personality. He is truly our Angel on Earth. It doesn’t seem possible that over a year ago, we weren’t given much hope that he’d see his Second Birthday – and here we are. The doctor was so wrong. And we know how much hope we have from seeing all the other kiddos living and having fun and thriving with SMA at the Gathering. Over all, it was a long 2-½ day trip home, but I’d do it again in a heartbeat.

The night we got home, we got Charlie another cake and celebrated again. This kids’ going to have the longest Birthday ever. He and Lily are sharing a party on September 11 with friends and family… Anyway, Lily started Pre-K yesterday and loved it. I’m so proud of her as well. She is such a big help with Charlie and a GREAT big sister. She was telling Grandma today how to “burp” Charlie and press on his stomach. (I was at the doctor’s office). Before I know it, she’ll be asking to cough and suction him as well ;0)

I’d better sign off now. Sorry for the long post. Between the site being down (which is why there hasn’t been any updates since July) and our vacation of 13 days, I’m way behind.

Hope all is well with everyone. Hugs and blessings – Kim

Thursday, August 25, 2005 3:23 PM CDT

We have been home since Tuesday, but I’m just now getting back to updating Charlie’s site. We had a great trip to Virginia Beach. We took 2 ½ days driving down there. It ended up being 1,200 miles. Luckily, both Charlie and Lily love to travel. I mean they love watching their videos. It was so funny. Charlie fell in love with Dora – that’s all he asked to watch. He’d get so mad when it was Lily’s turn to pick. I don’t think he’s a Sleeping Beauty fan.

We got to our condo in Sandbridge on Saturday. The place was great. It had a lot of space and a wonderful pool with a zero degree entry. It was so nice to play with Charlie in the water when we could sit him on the bottom and he could play – or we’d let him “walk” in the right depth with his weights on. It was perfect. Charlie and Lily couldn’t get enough of the pool. Our only complaint would have to be the beaches. It was beautiful, but Lily’s favorite thing to do is look for seashells. And there was none. So she was a little disappointed. We had a nice relaxing week at the condo. Watching movies, sleeping in, taking naps (well sort of) and just hanging out with the family. We did spend one day at the Virginia Aquarium. Charlie loves fish and watching them up close. It’s one thing that I wish we had here in KC. Then we spent another morning at the Norfolk Zoo – it was small but nice. The rest of the time was spent either in the pool or just relaxing.

On Thursday, some of our SMA Support Family had arrived in Virginia Beach for the SMA Support Family Gathering. I went for a quick visit to finally meet in person - my dear friends MJ and Brenda and I also got to meet Brenda’s mom Janis as well. It was so wonderful to meet these people in person! I feel like I’ve known them forever and finally getting to hug and pest and annoy MJ was worth the wait!

On Friday, We all went to the hotel where the Gathering was taking place. It was such a trill to meet so many of my SMA Family -- people whom I’ve been online with for almost a year now. These are the people who give me such support and great advice and ideas for Charlie. We had a great lunch and then went on a fun boat ride. It was just so wonderful to meet all the people. Ange, Alyssa and her family were incredible. I threw Charlie at them when we first got there. Ange’s son Jacob passed away 6 months ago. He would have been two on Friday (the first day we were there). He would have been two days older than Charlie. I’m so glad that they were able to make it all the way from Canada. They are such a wonderful, warm, caring and fun family. Charlie ate up all the attention that was bestowed on him. I can’t get into all the people that we met, but everyone was incredible. And I loved meeting all the SMA kiddos and their siblings. What a wonderful group of people. I can’t thank Laura Stants (the founder of SMA Support) and Stacy Saville (who lives in VB and helped organize the event) enough for bringing us all together for the weekend. I’m already anxious for next year.

Saturday, we had another great lunch, a beautiful butterfly release and the annual Candle lighting in honor of all the SMA Angels in Heaven and here on earth. It was a wonderful day of family and fun. We had birthday cakes for Jacob and Charlie after the luncheon and then a DJ played while all the kiddos laughed, had their faces painted and played. I was so sad that Charlie had to take his nap – but he was beat. We didn’t want him to miss the candle lighting and the butterfly release. Sunday came all too soon. After a great breakfast with MJ, Brenda and Janis, we said good-bye in the lobby for hours! And finally hit the road home around 1:00. Monday! On the Road, we sorta tried to Celebrate Charlie’s SECOND Birthday. WE made sure we were at a hotel early enough for him to swim – his favorite thing to do. We sang and sang Happy Birthday over and over again. Charlie joined right in! We are so proud of him and he continues to amaze us with his strength and personality. He is truly our Angel on Earth. It doesn’t seem possible that over a year ago, we weren’t given much hope that he’d see his Second Birthday – and here we are. The doctor was so wrong. And we know how much hope we have from seeing all the other kiddos living and having fun and thriving with SMA at the Gathering. Over all, it was a long 2-½ day trip home, but I’d do it again in a heartbeat.

The night we got home, we got Charlie another cake and celebrated again. This kids’ going to have the longest Birthday ever. He and Lily are sharing a party on September 11 with friends and family… Anyway, Lily started Pre-K yesterday and loved it. I’m so proud of her as well. She is such a big help with Charlie and a GREAT big sister. She was telling Grandma today how to “burp” Charlie and press on his stomach. (I was at the doctor’s office). Before I know it, she’ll be asking to cough and suction him as well ;0)

I’d better sign off now. Sorry for the long post. Between the site being down (which is why there hasn’t been any updates since July) and our vacation of 13 days, I’m way behind.

Hope all is well with everyone. Hugs and blessings – Kim

Thursday, August 25, 2005 3:23 PM CDT

Thursday, August 18, 2005 1:31 PM CDT

Hi Again! We are having a blast at the beach. The weather has been great. The only bummer is that the beaches aren't great for shelling, something Lily loves. We've found only a few that aren't just pieces, but that's ok. Tomorrow we will meet up with our SMA Support family. Some of the people who have helped us learn so much and find ways to take care of Charlie so much better. I am so excited! We went to the Norfolk zoo today for awhile. Saw some fun animals and then went to the pool. Charlie's napping now, so I'm going to enjoy some quiet time while Daddy's still at the pool with Lily. Will add a lot of photos when we get back. Love and blessings.

Saturday, August 13, 2005 8:16 PM CDT

Well WE MADE IT! We are now in our condo in Sandbridge, which is right outside of Virginia Beach. It was a long three day drive to get here (1200 miles), but seems to be a very nice place. We can look out our door at the ocean. Charlie and Lily can't stop talking about swimming in the water. We got here too late tonight to take them. So first thing in the morning.

Today is a very special Birthday of our friend Mr. Cole. He passed away from this awful disease last winter. We hope that he is celebrating his birthday in Heaven with loads of cake and ice cream and a lot of rough housing and running and jumping. Our love to his parents, Kristin and Dan.

Blessings -

Wednesday, August 10, 2005 8:14 AM CDT

We are getting ready to leave on our vacation tomorrow. We are heading down to Virgina Beach for a little over a week. We'll spend the first week by ourselves in a condo on the ocean. It should be so much fun. Lily and Charlie love the water so much. There is a great pool for them to use too.

Then the last weekend we are there, we will be going to the SMA Support Gathering. This is where I'll get to meet so many of my online family. The people who have provided us with so much support and information. We are so excited. There will be 18 other SMA kiddos as well as 90 adults and other kids. It should be a lot of fun for all.

By the time we get back, summer will be over and Lily will start Pre-K. So hard to believe how fast the summer flew. We'll also have celebrated Charlie's 2nd Birthday on the road. What a milestone - especially when it was all doom and gloom when he was diagnosed that most Type I kids don't make it to 2! And Charlie hasn't even been sick. He is amazing. Both of my kids are!

We hope this finds all well with everyone. I'll be sure to share all our fun and exciting things when we get back.

Hugs and Blessings -

Saturday, August 6, 2005 2:25 PM CDT

Not much happening here. Charlie and Lily are enjoying the summer with lots of trips to the pool. We can hardly drag them out of the water. But since the weather here has been very hot most of the summer, the pool is not a bad place to be. We are trying to figure out a party for Charlie and Lily's birthdays. Lily said it was okay to have one big party as long as there were two cakes. She's very proud of herself for thinking of that. So we will probably have the party a few weeks after we get back from Virginia Beach. I'm sure they won't mind not being on their birthdays :0)

Hope this finds everyone well.. I'll write more news when there is some to have.

Monday, August 1, 2005 8:54 PM CDT

Ok – I’m way behind on an update. All is well here at the Sykora household. We had a big scare with Lily last week. She had a fever that went up to 104 and she had what I call a seizer – unresponsive and making gagging noises. We got her fever down by alternating Motrin and Tylenol. She had a low grade over two days, but no other symptoms. Charlie avoided it. We are so glad that they are both healthy and happy again.

I started taking Charlie to Water PT again. We go to a PT much closer to home and Charlie really seems to like her. I’ll post photos and try to get a video up as well. He so loves the water and gets so excited if I even mention “swimming.” I know we’ll have so much fun on vacation in Virginia Beach. We leave a week from Thursday and have rented a condo on the beach for a week and then we’ll spend the last weekend at the SMA Support Gathering with around 90 other people and 19 other SMA kiddos/adults. We are so very excited to put faces with names that have become family on our chat.

It’s so hard to believe that summer is almost over. Lily will miss her first two days of school. It starts on the 18 and we get back the 22! Amazing how time is flying. We hope all is well for everyone. I’ll try to update more often.

Wednesday, July 20, 2005 9:22 PM CDT

We've had another busy week. Yesterday, we had plans with two other SMA families to go to the petting zoo and then to the pool. We've had no rain for months it seems, so what does it do? Rains all morning. It wasn't even in the forecast! So, Brett and Kristal (just one of the families) came over instead. We played all afternoon and ate pizza. I'll post a cute photo of Lily and Brett eating pizza while Charlie watched on his other site -- so click on other photos to see
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Today, Charlie had a fitting for a new TLSO and then PT at our local hospital. Then we had to run to the DME because a screw fell out of his chair. We got it fixed, but ended up leaving it anyway. They have his new head support, so they wanted to work on his chair to get it put on. We are very excited! We went home with their demo chair instead. Then Charlie was off to Swim PT. It was his first session with the new PT. He loved it! Sarah (the PT) was wonderful and Charlie had a blast. He got to play and move his arms and legs so much. He was so sad when we had to leave. I know he'll look forward to it every week. Then it was home for a nap. After his nap, we went to visit another SMA family. Liz and Kalair. Liz just had a baby, so we went to meet the newest member of their family. Turo (short for Arturo) is adorable. Lily and Charlie both had a great time holding him. I'll put a video clip as well as photos up on the other site soon. Then home and to bed! Whew, I'm sure Charlie is ready for sleep -- although he is up there singing as I type. He should be exhausted because I know I am :0)

It's hard to believe that Charlie is almost 2. I looked at the calendar and I couldn't believe we are a month away. Seems so long ago that we had the "death sentence" of being lucky to live to 2 -- let alone past that. How wrong that was. Charlie is so incredibly healthy and doing so great. There are so many wonderful families out there who have proved that statistic wrong and I'm happy to join them!

Hope all is well with everyone. I'll try to be better at posting more often.

Wednesday, July 13, 2005 8:16 PM CDT

Well we had a very busy last few days. John’s family came in on Wednesday afternoon and evening. We had Grandpa and John’s sister Mary and her family staying with us. And then john’s other two sisters and their families stayed at a hotel close by. Thursday, Charlie stayed home with nurse Cindy and two of the dads stayed home with the youngest two cousins and the rest of us hit World’s of Fun. It was a great day; although Lily wasn’t very brave and only did a few of the kiddy rides. But it was fun nonetheless. Friday was a day of golfing for the boys and playing and the pool for the rest of us. Charlie loved being entertained by 6 other kids running, crawling and just having fun. Lily and her cousin Sarah were inseparable. It was too cute. Saturday we all avoided the heat and went to a movie – Herby (I’m not sure of the name). I enjoyed it and Charlie sure enjoyed all the fun music. It was nice to be in a cool theater either way.

We had several late nights in a row, and we are all ready to crash. It was a great time having 16 family members together, hanging out in our house, but it’s good to be back in our routines. Everyone left on Sunday morning. What a fun reunion. Charlie was so exhausted that he napped for 4 hours each day!

Today, we had an appointment with our DME provider. He agrees that the system isn’t working for Charlie’s power chair. We are going to see what options we have and see what we can do with insurance issues. We think that we will try one of two things – first, see if Quickie will give us credit for the power base since it isn’t working for us. And if that is an okay deal, than maybe we’ll try to upgrade and get the Permobile or another chair. If we can’t get anything worked out with Quickie than we’ll try to build a seating system for the power base that will work in just the power base. I’m fine with that just as long as we can get Charlie in his chair more comfortably!

That’s it for now. Hope everyone is well. Hugs!

Wednesday, July 6, 2005 8:36 PM CDT

Happy Belated Fourth of July! Charlie and Lily had a great time shooting off small fireworks in our driveway. Grandma came over for dinner and we spent the evening outside watching Daddy go crazy. Charlie was so funny. He'd dance in his chair when the fireworks were spinning or smoke bombs were smoking. We didn't do anything big, but it was fun just the same. Charlie and Lily both got to do sparklers and they both loved it. It was a nice evening and a wonderful end to two plus weeks with Daddy home from work.

Today, all of John's family are coming in. One sister and her family will stay here along with John's parents and the other to sisters and their families will stay in a hotel close by. It should be an adventure and a lot of fun. I know Charlie and Lily will love having all their aunts, uncles, grandma, grandpa and cousins around to play with. Tomorrow most are planning to go to World's of Fun or Ocean's of Fun. Charlie and the two little ones will stay home. I know that Lily will have a blast with her cousins. I'll post after they leave. We should have a fun filled weekend with lots of photos to share.

I'll add a video of Charlie dancing to the fireworks as well as some photos. Check them out! Just remember that Charlie dancing is his stomach and head . . .You have to go to www.oursmaangels.com/charlie under my photos and then video page to see.

Saturday, July 2, 2005 3:17 PM CDT

Well, we made it home safe and sound. We had a fun trip, but it’s good to be home.

We left to head for Philadelphia on Saturday morning, June 18. We thought we’d stay over in Indianapolis, but came to find out that there was some Nascar event, so we went on to Richmond, IN and stayed there for a night. We left the next morning to head (not far) to Columbus, Ohio. We stayed there for two nights. We went to the Columbus zoo and aquarium. What a neat place. They have assessable rides for Charlie and his wheel chair. He rode on a merry go round and a boat that travels through a man-made trail through part of the zoo, but we didn’t make it to the train. The aquarium was wonderful. It was made of Plexiglas so you were able to get right up to the tank and see everything. There were several manatees, sea turtles, man o wars and tons of fish. Charlie and Lily had a blast and were so up close and personal. We also saw lions, elephants, snakes, spiders, monkeys, and so much more. It was a fun day and such a nice zoo. Then back to the hotel for naps and then swimming in the pool – which both Charlie and Lily love.

We left Columbus and made it all the way to north Philly where we stayed for two nights. We went to Sesame Place. It’s a fun water park – but had a lot more to do for Lily than Charlie. Charlie had a great time seeing his favorite Sesame Street characters in several shows. He and I did that while Daddy and Lily played in the water. It was a fun day, but we were ready to leave when the big rainstorm hit :0)

Then it was on to the hotel in downtown Philly for the FSMA conference. It was such a great time there meeting so many people. John put it so well when he said it was nice to be around people whose “normal” is the same as our “normal” – Suction machines and feeding tubes. I met a lot of great people from both my online chat as well as new friends. Charlie got to sit in a power chair of another little girl who has Type I. It supported him so much better than the power chair Charlie has. I really regret not knowing more and trusting our DME when we got Charlie’s power chair. It just doesn’t work very well for him. Charlie sat in Sydney’s chair and it was perfect. I’ll post a video on the video page. We also received Charlie’s “COLE’S Quilt” – It is beautiful. I’ll post photos from that as well as lots of photos of our SMA friends.

We had fun with Grandma and Grandpa there. Lily was so anxious for them to arrive. I think they had a good time too – even though it can be really sad listening to some of the sessions. We went to the Philadelphia Chapter FSMA walk on Sunday morning. We walked with Dr. Swoboda and Emma and Beth Lockwood as well as Linda Zuroff (from Cole’s Quilts) and her friend Dottie and Dottie’s son. It was a fun walk – but awfully hot.

We left Monday to head home – stopping only to stay over night and swim along the way. We made it home Wednesday afternoon. We are ready to stay put for a while – at least until we head for Virginia Beach in August. John’s family comes on Wednesday – so we’ll have another fun week.

Hope everyone has a happy and safe 4th of July. Sorry for the long update.

Friday, June 17, 2005 2:04 PM CDT

Ok -- this is my last post for awhile. I don't know when I'll have computer access. Lily is doing better - but grossly enough she's had really bad diarreha. I think this is the continuation of whatever was wrong before. I hope that it goes away before we have our long road trip :0) Also, hope that Charlie still doesn't catch it. It's nasty.

We are almost all packed and ready to go. We are very excited to see other SMA friends next weekend. I know Charlie will love all the fun things we are going to try to do on the way up there. I'll be sure to add photos.

Hugs to all.

Thursday, June 16, 2005 4:36 PM CDT

Well, Lily has been bouncing off the walls today. Thank goodness she's over the bug. Now, we just hope that Charlie won't get it.

I am procrastinating on the packing! I can't believe we leave Saturday for 10-14 days! It's crazy. Thank goodness we have a big truck. We bring everything but the kitchen sick.

Tonight, Lily and I are going to a Disney show at the outdoor aphitheater. It should be fun. Wish it wasn't so late and we'd bring Charlie.

Catch more later.

Thursday, June 16, 2005 9:25 AM CDT

Quick update.

Lily threw up yesterday morning several times. She had a fever of 102. She slept on and off all day – which is so unlike her. She finally wanted rice and a banana late last night. She kept it all down. She woke up this morning totally herself.

Please say prayers that Charlie doesn’t catch it. It would be so awful for him. With his Nissen, he doesn’t have the ability to throw up. I hear you have to just open his stomach tube, but I can’t even imagine. We leave for our trip in two days. So please pray that we all stay healthy.

Hugs to all!

Sunday, June 12, 2005 8:36 PM CDT

Again, it's so hard to believe how much time flies when I realize I haven't posted any updates. John got back tonight from a four day trip to MN -- 2 for business and then 2 to visit friends at a wedding reception. He said he had a great time, but missed us. Most likely, not as much as we missed him :0)

Charlie and Lily are doing well. I've had Charlie back on some medication and I can't tell if it's helped with his stomach or not. I think we may just be moving to a new phase where he needs to be "burped" more frequently via his g-tube. He also has good and bad days with eating. It's so wonderful to not have to force him to eat when he doesn't want to. Thank goodness for his g-tube. It seems so long ago that it was such a hard decision to make, and now, we know it was the best decision. We know he is getting all the fluids and calories he needs, so eating can be for pleasure or just to keep up his work at swallowing.

We have this week left before we head on the road again for a long, long trip. There is an FSMA conference in Philadelphia. We'll drive and take a few days at some locations on the way up for fun. We think Indianapolis and then outside Philly for Sesame Place -- I know that Lily and Charlie will LOVE that. We are meeting up with John's parents for the conference and then doing the Philly SMA Walk. Then heading home. We think it will be a 10-12 day trip in all. And lots of that on the road traveling. Good think Charlie and Lily love the videos in the car. I better sign off now. I'll try to update again before we leave. Please Lord, watch over us on our travels, keep Charlie healthy and strong and give Mom and Dad patience for when we have to listen to two kids asking "are we there yet?" haha!

Tuesday, June 7, 2005 8:42 PM CDT

Howdy

All is well here. Although Charlie has been having some weird issues with his stomach. We can't figure out what's going on. I'm thinking it may coincide with taking him off some medication. I'll probably try to start giving it to him again and see if that helps.

He's really a miracle and doing so well. We can't believe how big he is getting. It's so hard to forget that he's not a baby anymore. He is definitely opinionated and is good at "yelling" at me when he wants something. His "momeeee" get more aggrivated when I don't jump to get him what he wants :0) He is the best.

Well, better run and get ready for bed. I hope that Charlie sleeps a little better tonight. He was up and ready to play from 2 a.m. on last night.

Hugs!

Wednesday, June 1, 2005 9:22 PM CDT

Our fundraiser, The Barbecue Blues Party, was a wonderful success. We don't have final numbers because we are waiting for expenses and checks/donations are still coming in. But I think we'll be close to $20-25K! Thank you to all of our friends and family for your support. If you'd still like to send a donation -- just email me and I can get you the information. Thanks again for helping us make this such a big success.

Monday, May 30, 2005 7:15 PM CDT

We had a great Memorial Day weekend. Charlie and Lily are both doing great. We had a wonderful success at the charity event on Thursday. Not sure yet, but think we raised $24,000. It will be a few weeks until last minute checks are in and we know all expenses.

We hope that everyone has a great, healthy summer. We look forward to our trip to Philly in June for the FSMA conference and then to the SMASUPPORT Gathering.

Lots of driving coming up for sure. Hugs!

Monday, May 30, 2005 7:15 PM CDT

May 12, 2005

Charlie is definitely doing better. I'm not able to suction as much out. Last night we had a nurse, and she did mention that she had trouble keeping his stats up until about 1 a.m., but then he slept well. Maybe that was the end of it and he's going to be over this cold. It's been a long two weeks...

He had a lot of fun driving his chair today. He gets such kick out of running into things still. Now that the weather is nicer, we'll be outside to do it more. Maybe we won't get so many dings in our walls now :0) Hugs.

May 10, 2005

I think both Charlie and Lily are on an upswing. Hopefully, their colds are almost gone. They both had good days. Charlie had a little crackle in his chest, but we were able to get it out with his cough machine. We thank God that we have the equipment we have to help keep him out of the hospital. We have a night nurse coming tonight and I'm so glad. Charlie's alarms have gone off too many times to count the last few nights. The cold makes it hard to keep his stats up sometimes at night. I am looking forward to some good sleep.

We have our big charity fund raiser in two weeks. I'm getting nervous about that as well.. It should be a fun party, but you never know how well it will be received. It's a bad weekend for a lot of people with the lake, so pray that we sell enough tickets. I'm off to bed. Hug your kids and kiss your spouse. You will never have enough time with the people you love.

May 7, 2005

It's so hard to believe that one year ago today, John and I walked out of the neurologist appointment feeling like our world had crumbled down around us. The doctor had just told us that Charlie most likely had a neuromuscular disease called SMA. He then sent us home after telling us that we needed to think hard about how aggressively we wanted to intervene as well as quality of life issues. We both went home deflated. What would happen to our beloved little boy Charlie. How could something so awful be happening. I had to jump online to find more out about this dreadful prognosis that we were given. What we initially found online was disheartening. The majority of children diagnosed with Type I SMA don't live to see their second birthdays. But then we found hope. Articles written on the FSMA site by Alan Freedman about his Type I son who was 4, then 5 then 8. It talked about Bi-Pap machines, coughalator machines and all sorts of other equipment. But more than anything it talked about hope.

We contacted FSMA and were put into contact with an area mom and her 4 year old Type I little girl. They were more hope. They introduced us to a new world of medical equipment and special diets. I thank them in my prayers daily for showing us that we could find a way to help make Charlie's life better. We have been blessed with a lot this past year -- the support and help of our family and friends as well as a web of new friends -- doctors, therapists, nurses, other SMA parents. I learn a lot every day from my SMA Support group and will forever be grateful. Our live is very rich. Charlie is a blessing and we are lucky that God chose us to be his parents.

Looking back, it's hard to believe it's been a year since SMA entered our lives, but it's also hard to believe it's only been a year. We've been through a lot and look forward to many more years with our beautiful children. Whatever the future holds, we are blessed.

May 6, 2005

Charlie and I had a big scare today. We went through our morning routine of coughing and suctioning him. He still has his cold, so his nose was very congested. I then put him and Lily in the car to take Lily to school. On the way there, Charlie started sounding gunky, but okay. After I dropped Lily off and was driving through the parking lot of school, Charlie started gagging and seemingly choking. I pulled over. I didn't have the suction machine with me, but had a bulb syringe. I suctioned a ton out of his throat and nose. I knew I couldn't drive home with him sitting up in his car seat, so I laid him down on my lap and drove home. I was so freaked and scared. I had all sorts of horrible thoughts of what could happen. Charlie did well and when I got him home, we did his long routine of chest physiotherapy, postural drainage, coughing and suctioning. He was fine the rest of the day. I realized two things. One, when he's this sick, it's hard for him to swallow the drainage when sitting up so upright and two, I will never leave home without his suction machine again. I know it was a small scare and not as bad as some people have, but I was scared. I really hope Charlie gets over this cold quickly. It's been a long week.

May 4, 2005

We've had a crazy few days. Charlie came down with a runny nose a few days ago and had a low grade fever last night. We've been diligently using his cough assist and suction machine to try to keep it from turning into anything worse. He seems to be getting better today and no fever, so that's good news. We've been so lucky to avoid anything bad this cold/flu season. Keep him in your prayers that we can fight this cold quickly. We've had a ton of great advice and support from my online friends (other moms with SMA kiddos). I don't know what we'd do without them.

We've had such a weird spring. It's been unseasonably cold. We are so ready for warm weather. Hope the rest of you are keeping warm. Hugs to you all.

Update -- it's now evening and Charlie is having a rough night. We've had to cough and suction him a ton to keep him from being all stuffed up. We pray for a good night and that he can get through this cold without any problems. Hopefully, I'll have good news tomorrow morning.

April 29, 2005

It's been an uneventful week. Charlie keeps us laughing and smiling. He just sings and sings all the time. You'd think that he and Lily would be sick of Annie by now. But, we have to watch it at least once a day. And they both just sing their little hearts out with every song.

We are working hard to get ready for the charity event next month. I always forget how things come down to the last minute. It's hard to believe Memorial Day is so close. Hopefully, we'll be able to raise a lot of money for FSMA.

I'm still frustrated by the video issue. I can't seem to get them on our site. I think it's working, but once I close down, it never does. Hopefully, someone will help me figure it out soon. Hugs to all.

April 25, 2005

We had a busy weekend. We moved Charlie out of a crib and into a big bed! It was more for us than him. But it will be great to be able to sleep in the room with him if he is having a bad night. I think John and I were getting tired of being up and down some nights up to 7-9 times :0) Last night, I crashed in there after the third time up when it was only 1:45. We both slept great after that. I think he likes the company.

We went to a charity event on Saturday night for ITS --Infant Toddler Services of Johnson County. This is the group of therapist who come to our house for Charlie's therapy twice a week. We went with some other friends and had a nice time. It was a tear jerker evening thought listening to some of the parents stories and how much ITS had helped them. One woman read a poem called Welcome to Holland written by a woman who has a special needs child. Both John and I thought it was a perfect analogy. Check it out if you want.

Charlie and Lily are both doing great. Charlie continues to amaze us. He is the most happy person I have ever had the pleasure of knowing. He lights up our lives. Hugs to all!

April 20, 2005

So far it's been a good week. Charlie is doing great. We had a check up on Monday down at Children's Mercy and his doctor, OT, PT and nurse were all gushing over how well they think he is doing. He is such a strong boy and we are so proud of him. He was singing and laughing so loudly that the nurses said they could hear him way down the hall. He is such a flirt.

We did have some sad news with our SMA family. We lost two little angels this week to this dreadful disease. Kaydence was just 22 months. We met her and her mother and aunt at the last FSMA conference. Our hearts go out to them. Then a little girl named Larissa whom we didn't know. I know she had been struggling for awhile now. Say a prayer for both of these families and may God comfort them. Blessings and hugs to everyone. We'll update again later.

April 18, 2005

We are back from Des Moines. It was a quick, but very fun trip. Charlie and Lily had fun playing in the pool with their cousins Anna and Sarah. And Charlie loved all the attention from Anna. She was so good with him. Held his hand, played with him and hung out with him while Sarah and Lily played. It was a great trip. Charlie traveled so well again. He and Lily watched Annie on the drive up and the drive back. They both crack me up with how much they love that movie. Charlie and Lily know all the words. It's too cute.

We are all well and looking forward to a fun, healthy summer. We hope the same for all of you.

April 14, 2005

It's hard to believe it's been almost a week since last post. I still am trying to play catch up from our two week trip. We leave tomorrow for a quick weekend in Des Moines. We go every year to meet up with John's sister and her family. We stay in a hotel and the kids get to swim and visit. Lily always has a blast. Hopefully, the pool won't be too cold for Charlie. John's sister is from Minnesota so Des Moines is the half way driving point. I'm looking forward to seeing everyone, but wish I didn't have to pack again :0)

Charlie is doing great. We have a day nurse, Cindy, two days a week and Charlie loves the all day attention. We also have a night nurse once a week. It's nice to sleep more than 2-3 hours at a time. Charlie is loving his stander. Stays in for about 45 minutes to an hour. I think he enjoys the different view from up there. He also is doing well in his power chair. I know he loves to drive. He is getting better, but has a lot of work to do. I'd better get back to him. Barney is almost over. Hugs!

April 7, 2005

Well we made it home in one piece! We had a fabulous time in Florida. The weather was beautiful and the beaches on Ft. Meyer Beach were awesome. Charlie and Lily had a blast playing on the sand and in the pool. They are both my little water bugs. Lily amazed me with her ability to swim under water :0) And Charlie yelled for "wa wa" whenever we'd pull him out of the ocean. One thing we did learn though, is not to drive to Florida during Spring Break/Easter. We had such a trip on the way home. Loads of traffic, bumper to bumper. Accidents, delays, construction... We didn't think we'd ever make it home. I'll be sure to post a ton of photos later. I only took 194!! The joys of digital cameras :0) Hugs to everyone. We hope everyone had a wonderful Easter.

March 20, 2005

We are off on vacation tomorrow for a few weeks. We are driving down to Florida with my Mom and meeting John's parents. Everyone is healthy and happy and looking forward to great weather and fun. Will update upon our return. Happy Easter everyone!

March 14, 2005

We finally had some great weather here and also had a ramp to get Charlie's chair outside. We were only able to go on Saturday because it got cold and windy again on Sunday. Charlie had a blast. He was able to roll around with some of the neighborhood kids in our driveway. He is definitely getting better, although he still loves his circles. He would go around and around and say Mama when he saw me and then Dada then Mama -- it was so cute. Around and around he went. He'd go straight and into the grass. It was a hoot. We are so anxious for some nice weather so we can get outside in his chair every day. He loves to drive. You ask him if he wants to drive and he smiles and says "drive, drive". It's too cute.

We are all healthy and well. Keep our fingers crossed that we've avoided anything bad this year. With the late start of the flu season, we know we aren't out of the woods yet, but so far so good :0) I'll post a few photos from this weekend. And I'm still working on that video. Hugs to all.

March 11, 2005

Well, we've all been healthy for two weeks. So glad that Charlie seems to have avoided catching the fever/cold that Lily had. They are both doing well. Charlie is having so much fun driving his chair. We actually go straight a lot of the time. I know he has a long way to go, but I'm so proud of my little man. He continues to amaze me. We are excited, but nervous about our upcoming trip to florida. It will be a long drive and I can't get over being anxious that I'll forget to pack something important for Charlie. Loading up the car with his stuff alone, feels like we are moving :0) I'll post some more photos of him in the chair soon. I tried with the video and it loaded, but then didn't work... I'll keep trying.

March 5, 2005

I wrote a long update and for some reason it didn't save. So, here is a quick update. Charlie is doing well. He never caught the cold Lily had/has. Hopefully, he'll totally escape it. He is teething hard though. He was so cranky last night. I had to rock him for 45 minutes when he woke up at 10. His heart rate was elevated enough for the alarm to go off. While holding him/rocking him, he was fine. Second I put him back in bed, up shot his HR. I really think when the blood rushes to the gums while lying down, it really causes him pain. But that's just my guess. Charlie is still having a blast driving in circles in his power chair. He goes straight every once in awhile too. We are waiting for a ramp so we can get him outside. It is too adorable. So far, Lily doesn't seem jealous or ask to drive. I think she understands a lot more than I give her credit for sometimes. Lily is over her fever as of last Monday, but still has a runny nose. Pray that Charlie avoids it all. Again, we are blessed by Charlie's health. Hugs and blessings to all.

February 27, 2005

Ok -- I have been bad. I should have posted right away on Thursday and now the weekend is over and I'm just getting around to this. Charlie has power!!! He got his chair delivered on Thursday morning. He is really good at turning around in circles and enjoys himself so much. He definitely knows how to start and stop -- but likes to give a grin saying "stop, don't think so" when you ask him to stop. We reallly need a ramp to get him outside to drive now. The house has a lot of obsticals... I'll post some photos and I really need to learn how to put a video on because I have several cute ones.

On the other hand, Lily has some bug. She's had a fever for a few days and really not acting like herself. It's so hard to keep her from touching Charlie, handing him toys etc. I pray that Charlie doesn't catch it. He's been gunkier than normal, but only had a low grade fever one day. I think he's is just related to teething, but again, we just don't know. So prayers that both kiddos get 100% soon and that Charlie doesn't get anything bad.

There are so many SMA friends who are under the weather. Please include them in your prayers too.

February 23, 2005

First, we want to wish our good friend Kalair a very Happy Birthday! She turns 5 today. Her mom, Liz and she have made such an impact on our lives. We are blessed to have them as part of our SMA Family. Happy Birthday Kalair!

We had an adventurous day yesterday. First, I thought his mic-key button seemed like it could pull out a little too far. I checked the water level and it was low. So, I added water and waited about an hour to an hour and a half -- checked again, and it was low again. So obviously it was leaking. I knew I had to change it. It went very smoothly. Charlie didn't bat an eye. It was nice to change it when it wasn't in a panic like the first time. So, one more thing I don't have to worry about any more. I just wonder why we've had two go bad in four months -- when they say they should last 6-12 months???

Next we went to drive Charlie's power chair again. They are trying to get everything set for us to bring it home. They promise by this Friday we'll have it here! We are so excited. Charlie just goes "wheee, wheee" all the time he's driving it. He loves it. It then broke my heart to come home to have him get his RSV shots -- he gets one in each leg. He is such a trooper. Cries only for a minute and then he even smiles and laughs with the nurse. He forgives so quickly.

Last night has me worried though. He slept well, but early this am -- his heart rate kept going up -- enough to cause his pulse/ox to go off. I think I was in there 4 times just for that. I held him for about an hour and even that didn't bring his heart rate down to normal -- it was only in the high 150s to 160s, but still much higher than normal. He also had a lot more congestion. I'm not sure if he's teething and that's causing discomfort and congestion or if he's coming down with something. I was able to suction a lot more mucus than normal. So please keep him in your prayers that teething is causing all this and that we aren't heading towards being sick. Today, he's doing well -- still sounds a little congested and definitely wanting to chew hard on things. He's also not wanting to eat -- thank goodness I can keep him fed with the tube...Then last but not least, his feeding pump was acting so weird last night. I think the alarm on that went off 3 times as well. I finally turned it off at 4:30 because I got tired of it waking me up on top of Charlie and his pulse/ox. It worked great for the first 4 hours and then the alarm went off saying "no seal" -- I'd fix it and an hour later it would go off again. Very weird. All these bells and whistles and machines just wear me out some times :0)

February 19, 2005

Our hearts go out to Ange and Alyssa Trick and their family. Their angel boy, Jacob, flew to heaven tonight. He and Charlie were only days apart and both had SMA Type I. Jacob showed true courage and spirit by fighting so many illnesses. He and his family made such an impact on our lives. He will be missed. Blessings and hugs from all of us...

February 18, 2005

Well, Charlie and I made the news last night at both 5 and 9 and then this morning on the Fox News Channel. I hated myself on TV, but thought Charlie and his friends Brett, Kalair, Lauren and Clare were all adorable. (all of these kiddos have SMA). So that's fun. We received great press about our new event. I love raising awareness for SMA -- as well as money to find a cure. Now, we are just struggling to find a name for the party. We hope to raise a lot of money and awareness! Hope everyone has a great weekend.

February 17, 2005

Things have been going well. Charlie and I just got back from a press conference. A group that I've been involved with for a long time are starting a 3 day BBQ event to support area charities. I will be co-chairing the Barbecue party on the first night to kick off the event. It's being held on Memorial Day weekend. The great news is that the spotlight charity for the bbq party is going to be FSMA - KC Area Chapter. Charlie and I, along with several other SMA families, got interviewed by Channel 4, so we hope to get some publicity. I'll keep you all posted about the event -- in case anyone wants to volunteer, attend or just help in any way :0)

Charlie and I went to the equipment provider yesterday to check out his new power chair. They are still waiting for another part from the wheelchair company, but they wanted us to come in to get fitted. We should have the chair at home next week. We'll have to jimmy rig it to get Charlie enough hand/elbow support until we can figure out a tray for him, but it's so exciting. Charlie got to drive it yesterday and again, just went "weeeeeee" the whole time. It's going to be so much fun!

I better run. Lily wants some time and Charlie is napping. I'll post a few of their Valentine's photos on the photo page. Hugs!

February 12, 2005

Charlie is such a little bugger. He's somehow learned to push his bipap mask up so that it's not over his nostrils, but sitting on the base of his nose. So it's doing absolutely NOTHING when he does it. I check every time I am up at night to make sure it's where it's suppose to be, but the last two nights, it's been on the bridge of his nose in the morning. He cracks me up -- he's too smart for his own britches. We'll try tightening the straps on his cap to hold it down lower. . . Other than that, all is well here. We are STILL anxiously awaiting the equipment. We keep hearing the same things -- waiting for the parts from the vendor... I can't wait to see my boy in POWER! Hope all is well with everyone else. Hugs!

February 9, 2005

Just a quick update. I get so frustrated waiting on vendors. We were suppose to get both our Tristander (the piece of equipment that allows Charlie to "stand") and the power base (which will allow him to drive himself), a few weeks ago. But there always seems to be problems. I'm so anxious for Charlie to have wheels. It will be so much fun watching him zoom all over the place. Just had to vent a little. Other than that, things are great.

February 6, 2005

I just realized I haven't updated anything in a long time. That must mean that things are cruising right along :0) Which they are. Charlie is remaining healthy and well. So we can't complain. We had a fun week last week. We went to another SMA friends house (Brett - he's 5 and a Type II) for a play date. Brett was nice enough to offer Charlie his power chair for a trial around their house. It was so fun to watch Charlie try to zoom in the chair. He had so much fun and was ooohhhing over and over again. It makes me so anxious for Charlie's new power chair. I know he will be all over the place! Hopefully, we are just a few weeks away... You can check out cute photos of Charlie and Brett on the photo page. Also, once I learn how to put videos on this site, I can share some of Charlie zipping around in Brett's chair...

Lily is doing great too. She tried to have a sleepover with a school friend last night. We knew she wouldn't make it, but the two girls begged us unmercifully, so we relented. Lily was home in our house by 9 p.m. that evening. It was so funny, but I'm glad we tried it.

Well, I better get off to bed. Hugs to everyone. We are blessed with our good health and wonderful family and friends.

January 28, 2005

Life is good. I'm sitting here writing this, listening to Daddy and Charlie play chase with Lily. I can hear Charlie squealing and laughing. It's little moments like this that bring true joy and remind us that Charlie can enjoy most games that little kids play -- we just have to improvise. Daddy is sweating up a storm carrying Charlie while running all over the house, but oh, it's so worth it.

Lily had a rough day. She threw up four times this morning. I'm hoping that it wasn't a bug, but just too much of a cold draining into her stomach (sorry to be gross). I kept Charlie away but hope that if it was a bug that Charlie doesn't catch it. There is only so much we can do to keep Charlie safe from germs :0)

It's now time to go put the kiddos to bed. We are blessed by so much and it shows itself in every laughter and giggle that makes our hearts swell. God bless.

January 28, 2005

I'm a little worried about Charlie's chest. It's getting more and more out of shape. He spends most of his nights on his right side because he prefers it. We try to start him out on the left, but he fusses to change positions and lasts longer on his right. Anyway, it's starting to get more and more flat on that side. I know that BiPap is suppose to help with that, but not sure what else I should be doing. I hate not knowing what more we should be doing. He needs his sleep and we can't force him to sleep in positions that he's not as comfortable in, but....

Charlie is still staying healthy otherwise. He's doing great on the AA diet since he's stopped nursing. He's only eating orally about 1/3 to 1/4 of his calories, so it's nice to have the g-tube option and not feel like we have to force him to eat. We go in at the end of next month for his 18 month check up.. I can't believe how big and grown up my little baby boy is getting. It's hard to remember that he's not a baby anymore. By now, he'd be all over the place and into everything and probably wearing his mommy out more than I can imagine if it wasn't for this dreadful, awful disease. But I have to remind myself to remember the positives. He is just so smart (again, I can say that since I'm his mommy). He counts to 10 and his sitter Nadia says he counts to 5 in Spanish for her. He sings a lot of the ABCs with Lily and me too. I wish I could learn how to put videos out on this site because I have the cutest one of Charlie having a conversation with Simba. Simba was a present from one of his therapists and Simba talks and pauses for responses and then talks more. Charlie will have an entire conversation with this toy and it's the cutest thing ever! Enough of me bragging, but I just felt the need to talk about good things.

January 25, 2005

Ok -- we had such a weird night last night. Charlie went to bed at his normal time, but seemed really fussy on bipap. I knew it would be a long night because normally he goes right to sleep -- or he sings for awhile. He's never cranky about it. He fell asleep and woke up around 9. So I went in to roll him over -- this was much earlier than normal, but thought if he wanted it, then so be it. I bet I was up and down 7 times before 11. He was so fussy and uncomfortable. Then he really started fussing and his heart rate shot up so that his alarm went off. I went in and tried to calm him down. He was fine as long as I was beside his bed. If I started to leave -- even if his eyes were shut -- he'd wake up and fuss. After going back and forth for an hour, I finally took him off his pappy to see if that was bugging him.. It worked for a while and then he got fussy again (now, mind you, Charlie is NEVER fussy like this). About midnight or so, I finally had to sit in the rocker with him. I kept his pulse/ox on, but had to undo his feeding tube. We stayed in the chair for 1/2 hour or so, and he was content and fell back to sleep. So I put him back in bed, hooked up his feeding tube and went to bed. All was well. He slept until 5:30 without a peep. When John went in to wake him up -- Charlie was all wet. I'd forgotten to open his feeding port when I re-hooked him back up. So, all his food went all over the bed and him and NOT in his tummy. I wonder if he didn't have an upset tummy or something last night. Either way, after we gave him food, he fell back to sleep in our bed and is still sleeping (it's 8:30). I just wish I could figure out what was wrong. He never gets that upset on his pappy. I hated keeping him off all night, but it was the only thing that worked. Hopefully, it was just his teeth or a slightly upset tummy. Now, I need a nap :0) John slept through it all (ha ha).

January 18, 2005

So far Charlie has avoided any bad colds, but Lily came home with a doozie. She's got a pretty deep cough and runny nose. I am saying many prayers that Charlie doesn't catch anything from her. It's so hard to keep her from playing with him and touching all his toys. Hopefully, we've done enough hand washing and purelling to keep the bugs at bay. Charlie has me concerned in that he's not wanting to eat as much. I'm hoping that this isn't the start to his losing his swallow. But only time will tell and we have to keep on trying. I've just been increasing his tube feeds and am just letting him eat what he wants. John and I use to try to make him eat his two jars of baby food a meal and I'm just not going to force him. I'll let him eat for pleasure and make sure he gets enough calories via the tube. We'll see what happens. I know that we've been so blessed already in that he hasn't been sick and he still has his swallow. So, we will thank God for the good things He's given us and know that Charlie is in His hands. We pray for all the sick SMA friends and family as well.

January 17, 2005

While we had a nice quiet weekend, we are anxiously awaiting Lily's and Daddy's arrival home. They are driving back today from Minneapolis. All we've heard is how much fun Lily had with Anna and Sarah. I'm so glad that Lily and John were able to have special time together with his family. Next time, when it's not 15 below zero in MN, Charlie and I will look forward to going to :0) I know Charlie will be so excited to see his Daddy and Sister. He misses Lily during the day - even when she's at school. She is a good source of entertainment for him. I love how Lily will play with him sometimes. Safe journey Daddy and Lily.

January 14, 2005

Charlie and I have been having a good time. Lily and John went up to Minnesota for the weekend to visit his parents, so it's just Charlie, Grandma and me hanging out. We have been playing a lot and having fun. During therapy this morning with Kristy, his PT, Charlie sat up with his new TLSO support and played for 10 minutes. He looks so big and tall when his chest wall is supported. I'll be sure to take some photos when John gets home with the camera. Then, we spent 10 minutes in the stander. It's so much fun seeing him up and happy. But the thing that I love the most is that Charlie "counts" to 10. You can't understand every word, but it's definite that he's trying to say each number. He is so smart and adorable. I can say that since I'm his mother (smiles). We miss Lily and Daddy, but are enjoying some quiet time too.

January 12, 2005

Well thankfully, we've had several uneventful days. Hopefully, the elevated heart rate was just caused by something I inadvertently did. Charlie is doing great. My only bummer is that he's giving up on nursing. (In case you didn't know I was still nursing him several times a day because he's been doing so well health-wise and everything I've heard is that SMA kiddos go down hill a little when they stop nursing - although some says that's because you start with milk and we aren't doing that...) Anyway, since he's been doing so well, I didn't want to change anything. If nursing a few times a day was helping, then by all means, I wanted to keep it up. But now, Charlie is the one deciding to quit. If I'm lucky, he'll do it once a day, but not always. I've tried to pump thinking that I could add that to his feeding tube feedings, but I'm not having much luck there either. So, needless to say, I'm going to worry that Charlie will take a turn for the worse. I sure I'm just paranoid, but I figured as long as we keep doing what we are doing, then he would hang tough...So, I guess we'll just have to wait and see. Hope all is well with everyone.

January 8 , 2005

We had another fun day. Charlie loves his new cousin Maria almost as much as Lily does. After an uneventful day, we put the kiddos to bed. John, Kara and I were down stairs watching a movie when Charlie's heart monitor went off again. John rushed up stairs and Charlie's pulse was racing in the 180s. After I picked him up, rocked him and held him, his heart rate went down and he had a normal night. We don't know now what caused the episode tonight as well as yesterday. We just hope this isn't an indication that something is coming. We thank God for giving us each healthy day with our children and feel blessed that He has given us so much healthy time with Charlie. We hear a lot of stories from other SMA families and know that we could have it harder. Hopefully, these two heart racing incidents are all there are going to be for a long time.

January 7 , 2005

Ok -- we had a scare today during Charlie's nap. I normally give him prune juice and his Miralax (constipation medicine) into his g-tube via a syringe. I give him 4 ounces, so I have to put two ounces in his syringe and let it drain, come back and put the rest in. Then I typically wait 1/2 hour or more and add some water to try to increase his h20 intake. Well, today, I was upstairs doing things, so I kept going back in and didn't wait the normal times. I put more water in than normal since it drained so quickly and then went downstairs. About 5 minutes later, Charlie's pulse/ox (this is the machine that measures his pulse and oxygen saturation levels) went off. I ran upstairs and Charlie was shaky, upset and his pulse was racing at 174/76. Anything over 170 causes the alarm to go off. I think I immediately knew what I had done. I think I "overstuffed" his belly causing him to be distressed. I pulled out almost 4 ounces and threw it away. I then picked him up and rocked him for 15 minutes at least until he was calmed down and his pulse was normal again. It really freaked me out. I'm not exactly sure what would happen if he's pulse stayed high. But it was a scare. Everything was fine for the rest of the day, so all is well. I just wish I knew more and know that I will keep learning new things daily from this disease. John came home about 30 hour later. He was at the airport picking up his little sister Kara and her 5 month old daughter, Maria. The rest of the day/evening was great. Lily loved having a baby in the house to play with and Charlie kept saying something that resembled "bebe" -- he loves Maria too. It's fun seeing him giggle and try to touch a little one. I'll post photos soon.

January 3 , 2005

Someone just asked me about the clinical drug trials and where we are with that. I figured I should update everyone. We were in the process of looking into two different trials earlier this past Fall. But then we decided to move forward on getting Charlie's g-tube and that took precedence over anything else. Now, he's been doing so well, that we haven't looked into the trials right now. I know we'll keep our options open and keep looking into upcoming or continuing trials, but right now, we are just happy with the way Charlie is staying healthy. We'll keep you posted when we start thinking about trials again.

January 1 , 2005

I just couldn't let the first day of a new year go by without a posting! Thank you to everyone who is keeping up on our family by using our website. We love reading the posts in the guest book from all of our family and friends. We also love knowing that more people are learning about SMA -- it still amazes me how easily it can affect anyone. That John and I carry this genetic defect is beyond my wild dreams. You always imagine that you will have healthy, happy children. But to now know that 1 and 40 adults carry this defect, it's still so incredible to me that I had not heard of SMA before we had Charlie. Please help us spread the news. The more people who know about this disease, the more help we can have in stopping it. No child or parent should have to deal with genetic diseases like this -- or MD etc. So, please feel free to share Charlie's story and website with any of your friends. We wish you health and happiness in the new year. I can't believe it's 2005! How many checks will I write with 2004 before I finally remember. God Bless.

December 31, 2004

It's so easy to count our blessings of health, family and happiness when the world is wheeling from a blow of mother nature -- the horrible tsunami. Our hearts and prayers go out to all the families affected by this horrible act of nature as well as to the families that have recently (or not so recently) lost their love ones to SMA. We feel blessed by each and every healthy day we have with our beautiful family. Please hug each other for us and Have a safe and happy New Year's eve.

December 29, 2004

One piece of VERY EXCITING news that we got right before Christmas I forgot to share . . . After only one appeal, our insurance company has approved two very important pieces of equipment for Charlie. A Tri-Stander which will allow him to "stand" and do weight bearing through his legs. This will help with bone development, respiratory health, intestinal issues etc, etc. We are so excited to get this started! But the MOST fun will be a POWER Chair! So little Charlie can move on his own! We are so excited. I can't even imagine my emotions when he can move from point A to point B all by himself -- the way he'd be doing on his own if it weren't for this horrible genetic disease he was born with. We are just waiting to get final faxes sent to the DME so we can start the process. I don't know how long each will take, but I'll be sure to post loads of photos! Yippee!! What a GREAT and the BEST Christmas present! Hugs!

December 27, 2004

Hope you all had a wonderful Christmas full of family, fun and happy times. We had a great Christmas. Everyone was healthy and that is the blessings we love the most. We were able to spend Christmas eve with my mom, brothers and sister-in-law and nieces and nephews. Charlie and Lily had a ball! We were out way too late and Charlie was a trooper as usual, his sister Lily, well, let's just say we are experiencing the terrible twos now that she's three :0). We had a great morning Christmas morning. Lily was so excited that Santa came! We had fun opening way too many presents! We hope that all of you were able to experience the joys of the season as well. Blessings!

December 13, 2004

Just thought I'd write another update even though we are doing just fine and really don't have any news. Charlie is remaining healthy and strong. He didn't even catch Lily's cold. Although, we are still knocking on wood. Charlie is repeating and learning so many new words. He is so adorable and we are quite proud of him. Lily remains a very wonderful big sister, although whenever she sees babies -- she's asking for another little brother or little sister. I wonder what Charlie would think. We will be home this Christmas and are looking forward to a visit after the holidays from another one of John's sisters. So far, we've seen everyone in the last few months. They are so good about coming to visit here so we can stay home and not travel for awhile. Charlie received a new computer adapted switch interface and a few computer games for Christmas from his aunts and uncles. We spent more than an hour playing today on the computer. He laughed and sang. It was great. A Big thanks to them for another great way to keep Charlie happy and stimulated.

December 9, 2004

Charlie's Grandpa made him a very special table. Charlie can sit in his tumbleforms chair and play with his switch toys as well as some other toys. It is just perfect. It supports his elbows which for Charlie is so needed and it also has a rim around it so that his cars and trucks don't roll away. We send big hugs and thanks to Grandpa for his craftmanship and to Grandma for the wonderful paint job. I'll be sure to post some photos soon. All else is well. Charlie is fine and Lily seems to be getting over her cold. Maybe we've avoided getting Charlie sick once again.

December 6, 2004

We had our first big scare this morning. Charlie actually slept in until about 7:45. I was enjoying the extra lazy time because Lily was still sleeping as well. I heard Charlie start to stir, so I went in to get him up and nurse him. I got everything disconnected and realized that his Mic Key button had fallen out. This is the button that connects to his internal feeding tube. My heart started racing. What if the track had closed up? How long had the button been out? How do I put it back in? Do I go to the ER? Try to do it myself? Well, I yelled to John since he was still home by luck (his parents were still in town from the weekend) and we raced downstairs. I grabbed the spare button and tried to put it in. It slid in very easily and so I filled the balloon that is under the skin with water to hold it in. I was so worried -- did it go in right? How do you know? So, I picked up the phone and called both Liz and Krystal -- two moms here in town with SMA kiddos for help. They both felt that we were all right as long as it went back in without any problems. So after a quick 25 minute scare, we were able to calm down and get on with our day. The reason it was so scary to me, is that we were warned when we first left Madison, that if it fell out to rush to the ER since the tube inside could close up. Then when we went back for our check up, they didn't want to take it out to show me how to change it because they thought it was too soon and didn't want to risk it closing. Now, of course, that was a few weeks ago, but still, I had never change the button myself -- nor have I seen it done. I knew that in 4-6 months, I'd have to change it on my own, but was planning on either going into Children's Mercy to have them watch me, or having one of the other Moms come help the first time. I guess I learned that it wasn't that bad to change it by force of nature. So all I can say is whew. What an adrenal way to start the morning :0) Charlie is doing great other wise. He's still his ever-bubbly happy self. Lily is wonderful as well. Such a big help and happy big sister. She has a pretty bad cold right now, so I'm worried that Charlie will catch it. So, I'm being antibacterial gel queen even more so than usual. We hope all is well with everyone else. Hugs - Kim

November 26, 2004

We hope everyone had a wonderful Thanksgiving. Ours was pretty quiet. Had a nice dinner with my family at my mother's. Lily loves playing with her cousins, so we didn't see too much of them. They were downstairs or off having tea parties. Charlie went down for a nap right when we got there and slept almost the whole time. I wanted Charlie to wake up in time for some dinner (but he didn't). He was up in time to enjoy pumpkin pie and whip cream though. We are all healthy and very thankful for that. It's been a great year so far as we've avoided any bad colds or the flu. We know we have a lot of winter left, so we'll keep our fingers crossed for good health. We hope everyone had a Wonderful Thanksgiving. And may the rest of your holidays be merry too.

November 17, 2004

A lot has happened since we last posted. Charlie, Grandma Joyce and I went back to Madison for a follow-up with the surgeon Dr. Shaban and wonderful Dr. Schroth. Dr. Schroth noticed that Charlie had lost a little weight, so she had us meet with the nutritionist to help us figure out what we can add to his diet. (I, of course, came back here and talked to the resident "SMA Nutritionist" Liz and figured out what we thought would work best.) We had a nice visit with all the wonderful people at UW and then headed to Waterloo, Iowa to visit Charlie's Great-Grandparents, two Great Aunts and a Great Uncle. Charlie loved hanging out in his 94 year old Great-Grandfather's arms. He would giggle and giggle. And then just stare across the room at Great-Grandma and Great Aunt Diane. We also saw his Great Aunt Jean and Great Uncle Clarence. Charlie had fun singing "e-i-e-i-o" with Aunt Jean. It's his favorite thing to do -- sing Old MacDonald. After our short visit, Mom and I hit the road home. After three days of travel, doctors visits and more travel, it was so nice to get home to Daddy and Lily. It was too funny, Lily wanted to stay at the Madden's house for "five more minutes". Guess she didn't miss us too much :0) We know are ready to get back into our routines, get ready for the holidays and catch up on some sleep. By the way, Charlie is doing great on Bi-Pap as well. He sleeps all night now. Of course, he still wakes up and wants to change positions, but with a quick roll over he's back to sleep. Thank goodness for the g-tube feedings at night. No more waking up to feed him every four hours. Take care -- hugs to all.

November 8, 2004

Sorry it's been a few days since I've been back. We had visitors in town all weekend. It was great fun. Charlie's Aunt Mary, Uncle Tim and Cousin Claire (7 months) came for a visit. Lily had a blast playing with Claire and Charlie wanted to touch her whenever he had the chance. It was nice to visit and to see Charlie laugh at the antics of his sister and cousin. We are heading back to Madison tomorrow for a check up and upper GI. I know the trip will be uneventful because Charlie is doing so well. He hasn't had any problems with the new tube and is adjusting well to sleeping and not nursing all night :0) And the most amazing things is that he doesn't fight the Bi-pap at all. He goes right to sleep. If mom were just a little better getting the mask and bonnet on, he wouldn't fuss at all! He goes anywhere from 8-10 hours on it at night -- so I'd say we are doing great! We look forward to getting a clean bill of health and hope that Charlie can start eating solids again. He's tired of only baby food and wants bites of what we are having all the time. We will touch base again when we get home. We are swinging through Waterloo on the way home to see Charlie's 94 year old Great - Grandparents as well as a few great aunts and a great uncle. It will be fun to see so many generations together!

November 2, 2004

Howdy - Hope everyone had a very Happy Halloween. It was rainy and cool here, so Charlie stayed home with me and answered the door. He thought all the kids and costumes were pretty fun. Lily had a good time trick or treating with her daddy. I ordered a batman costume for Charlie -- but when it came, it was WAY too small. So Charlie was a Giraffe (Lily's costume when she was 1) and Lily was a crocodile again. Funny that she doesn't want girlie things -- but a croc two years in a row. I'll post photos. We had a visit from Kalair in her beautiful wedding dress. She and her mom are our angels. Kalair is almost 5 and has SMA Type I just like Charlie. We get a lot of our information and most of our advice from them. We are blessed by our new SMA family. We head back to Madison next week for a check up. They want to do an upper GI and then just check out Charlie. He's doing great and sleeping so much better on his BiPap. All night!!! What a wonderful thing to be able to feed him through his tube and keep him sleeping longer and better. He'll wake up once and kind of fuss, but goes to sleep with a few pats on his back and a change in position. He gets sore because he can't move around like we do when we sleep. Oh well, enough rambling for now. We are going to dinner tonight with Mom since it's her birthday. Blessings to all - Kim

October 28, 2004

Just a quick update. Charlie is doing great -- you would never know that he underwent surgery a week ago. He is such a trooper and an inspiration to us all. We finally started using the g-tube for night feeding last night. We had to wait to get the pump and then had to find a way to get some of the tolerex that we'll be using to supplement him at night. Thanks to a wonderful SMA friend, we were able to get a few boxes to get us started. We didn't get the sleep that we thought though. Charlie woke up twice and I just needed to pat his back to get him to sleep. Almost seems easier to nurse him and put him back to bed :0). I'm sure we'll get use to it... The other good news is that Charlie is sleeping longer and better on his bi-pap. I think the hospital stay was just what we needed to get him more use to it. He still doesn't love it, but he tolerates it better now. Hopefully, in a few days, he'll sleep through the night! That's it for now. Hugs to all.

October 25, 2004

Hi to all! We are BACK from Madison and we are so happy to be home. Charlie did so well that he was released from the hospital sooner than originally thought. He was only in the PICU for one night and then we were able to move him to the Peds ward. We were overwhelmed by all the great nurses, RTs, doctors and staff at the University of Wisc hospital. Dr. Schroth and her team were wonderful and so were Dr. Shaaban and his team. Charlie doesn't seem to be in any pain or discomfort. He was back to his singing self by early Friday morning (the surgery was around noon on Thursday). He had all the doctors and nurses singing with him :0). Charlie will continue to eat food by mouth during the day and we'll supplement him over night via his tube. That way, we all can start to get a little more sleep around here ha ha! Thanks for all the prayers, support and good wishes. We couldn't do this without everyone! Blessings and hugs - Kim Oh by the way, Sidney did awesome during her procedure. She was home that night and ready to play soccer the next day! And our friend Lindsay Cochran, who underwent the g-tube and fundi up in Madison the same day as Charlie is on her way home today as well. So thanks again to the great staff and doctors at UW!

October 18, 2004

It's been awhile since I've had a chance to write. We are heading to Madison for Charlie's surgery in a few hours. Thank you for all of your prayers. We will update everyone as soon as we can. We think we'll be in Madison until early next week. Prayers for my niece Sidney as well. She undergoes a heart procedure on Wednesday (the day before Charlie). I know God will wrap his arms around them both and see them safely through their surgeries. Hugs to you all.

October 7, 2004

Charlie is such a joy and inspiration to us. He is always so happy. Even after a round of the cough assist or after using the suction machine -- something that I tell you would make me not happy -- he is ready to laugh, sing and smile. He loves to flirt with everyone. Get him on an elevator or out in a crowd and his "hi's" fill the air. He's always ready to sing "e i e i o" to Old MacDonald. Driving in the car, he entertains me with his Dadadad and Mamamam which he knows makes me laugh. I'm so amazed at how many words he loves to say and how he knows what to do to make us giggle. I just wanted to let you know how much of a joy he is to us. He loves to watch his sister jump and play. He loves to watch Barney sitting on his bean bag chair next to Lily. He loves to "sing" along when Barney sings his songs. I could go on and on. Just smile for Charlie and be happy. We are anxiously awaiting our big trek up to Madison in a few weeks. Keep Charlie in your prayers. We'll keep you posted. Hugs to you all and thanks for all your support.

October 3, 2004

Thank you thank you thank you! That's to all our friends and family who walked, sponsored and otherwise supported us for the 4th Annual Roefest Walk and Roll. We had such a great turnout. I believe the organizer (Natalie) said that we had more than 600 walkers and raised more than $30,000. I feel like we had 100s of people there wearing Charlie's pin! We'll post photos soon. Charlie's doing great! We are so lucky that he hasn't had any set backs. We are still anxious about the g-tube surgery, but know that it's the right thing to do while Charlie is healthy, strong and well.

September 30, 2004

Wow! That's all we can say. We are so deeply touched by all of your messages via email and the guest book. I'm glad the site is such a hit :0) I'm trying to figure out how to put a PDF on the site. Charlie (and mom and dad) were in the paper yesterday talking a little bit about SMA and the upcoming walk this weekend. It was a nice article. Hopefully, I can post it on the site soon. I'm still a newbie at this web design stuff. Charlie is still doing great. He is still fighting his ear infection, but it hasn't slowed down his laughing and giggling! What a trooper. Blessings to all!

September 28, 2004

This week we are getting ready for the 4th Annual Roefest Walk and Roll. It's a fund raiser for FSMA. We have so many friends and family signed up to walk or supporting us that we feel blessed. If anyone wants to join us, the walk is Saturday, October 2 at 8 a.m. You can sign up on line until Thursday, September 29 at www.active.com or you can sign up the day of the race starting at 6:30 a.m. We hope to see you all there! If not in person, at least in spirit.

Update on Charlie -- he has a little running nose and another ear infection. The poor guy seems to have ear infections all the time. He is such a trooper and never sad. We are lucky to have such a wonderful little boy.

September 24, 2004

Howdy

We've had some changes in our plans. We didn't go to St. Louis because of two things. First, Charlie is scheduled for his g-tube surgery on October 21 at the University of Wisconsin Medical School. We decided to go up to Madison for the surgery since Dr. Schroth is there and their team is very good at getting SMA kids extibated after surgery. We will be heading up to Madison on October 18 for our clinic meetings and surgeon visit on October 19.

Second, we are also looking into another study at Stanford, so we didn't want to move ahead with the Rilutek study until we are sure what we want to do.

We are nervous about the surgery, but know that Charlie is strong and he is such a fighter. Keep us all in your prayers.

Hugs and blessings,

Kim

September 17, 2004

Hi Friends and Family --

Things here are going well. Charlie is still healthy and happy. We are looking into doing a clinical trial in St. Louis with a drug called Rilutek. Charlie and I are heading to St. Louis next Wednesday for the initial evaluation. So we'll have to keep you posted on that.

We are also looking into doing a g-tube proactively. It's been a hard decision to make since he is still eating well, but all the advice we get from other families is to do it before you need it.

Other than that, things are well. We still use the cough assist twice a day along with the suction machine. We aren't as good about using the Bi-Pap machine, but know that we need to get him on it every time he sleeps.

We'll keep you all posted.

Monday, May 30, 2005 7:13 PM CDT

Monday, May 12, 2005 7:13 PM CDT

We have Charlie healthy and happy again :0) But now, Lily has a low grade fever. Please pray that it's nothing and that Charlie doesn't catch anything new.

Also, please pray for Uncle David (my brother). He is in the hospital with what might be a brown recluse spider bite. They don't know what it was for sure. But he's on heavy pain killers and IV antibiotic. They want to keep him for 2-3 days! He went to the doctor last week for what he thinks was a spider bite. They put him on antibiotic, but it didn't help. Now, he's in the hospital. We need him out because the big three day event is next week -- and he's one of the main people in charge - yikes.

Lily's last day of school is Wednesday. It's hard to believe that her first year of school is over (pre-school, I know, but still school). Charlie and I look forward to having a lot more fun now that she's home. We can't wait to get to the pool in a few weeks.

Hope all is well with you and yours. Hugs!

May 12, 2005

Monday, May 20, 2005 7:12 PM CDT

Just a quick update. All is well here. Charlie and Lily are finally both healthy (hope I am not jinxing us). We are all busy trying to get ready for our big fundraiser next Thursday May 26. It should be loads of fun, but there is so much work to do. We'll let you all know how it goes.

Charlie, Lily, Grandma and I went to a place called Deanna Rose Farmstead on Tuesday. Charlie loved it as much as Lily always has... he got to feed the goats, touch a ton of fish that Lily caught and ride a hay rack ride. He had a blast. We'll post photos soon.

David got out of the hospital on Thursday -- he still has a Pic line to do IV antibiotics at home, but he's just glad to be out of the hospital...

Look for us on Channel 5 TV on Sunday. We are going on to talk about SMA and the fundraiser. We'll be on live at 10:15...

Hugs to all!

Friday, September 17, 2004 9:27 AM CDT

Hi Friends and Family --

Things here are going well. Charlie is still healthy and happy. We are looking into doing a clinical trial in St. Louis with a drug called Rilutek. Charlie and I are heading to St. Louis next Wednesday for the initial evaluation. So we'll have to keep you posted on that.

We are also looking into doing a g-tube proactively. It's been a hard decision to make since he is still eating well, but all the advice we get from other families is to do it before you need it.

Other than that, things are well. We still use the cough assist twice a day along with the suction machine. We aren't as good about using the Bi-Pap machine, but know that we need to get him on it everytime he sleeps.

We'll keep you all posted.

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