Sunday, October 15, 2006

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

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 

We had another fun and busy week here in the Sykora household.  John and Lily were gone last week 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 past 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.

Saturday, September 23, 2006 

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.  Then it was off to PT for John and Charlie while I snuck off for a ride.  The weather here has been awesome!  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 

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   

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 (once alive) 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. 

Friday, September 8, 2006

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 4^th 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!

Saturday, September 2, 2006 

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.

Tuesday, August 29, 2006 

A GREAT BIG sigh of relief coming from the Sykora household.  Charlie seems to be all-better.  We went to his pediatric appointment yesterday (the first time he’s been out of the house since a week ago).  He did great in the car but I was worried so I made John come with me to the appointment.  Dr. Waters thought he looked great.  Charlie was more than 40 inches long (it’s hard to tell exactly how long with his contractures) and weighed 27.9 pounds.  He is staying in the 95% for height!  Such a tall boy.  Dr. W still heard a little something in his right lung, so he thought it would be a good idea to put Charlie on another round of antibiotics.  We put Charlie right to bed when we got home and he napped for 3 hours.  He was tired. 

Today he was still doing so well that we decided to take him to preschool.  SO!  Charlie went to HIS FIRST DAY OF SCHOOL!!!  He loved it.  It worked out great because today was early dismissal day so we were only there for an hour and a half.  We got there just in time for circle time.  Charlie was in heaven.  He loved his first day.  And it was even more fun because we brought cupcakes in to celebrate his birthday.  He played during ‘station time’ with a few boys and girls at the ‘car station’ and a sweet girl named Meredith kept coming over with pictures that she colored and drew for him.  Then he had another girl, Milcah, who helped him play as well as push him around in his chair.  So I think he’s a hit with the girls already!  Not that I had any doubts.  I’m so glad that he was able to get to school today.  His big birthday party (that he’ll share with Lily) is this coming Sunday.  There will be around 35 little kids there.  So it’s a good thing that his classmates got to meet him since they were all invited.  I’ll post photos soon.  He really had fun and said he can’t wait to go again. 

Saturday, August 26, 2006   

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   

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 Lin 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 Lin 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   

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

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!

Friday, August 5, 2006

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. 

Monday, July 31, 2006

I forgot to mention a something in my long update yesterday.  First and the best news of all is that Charlie's tummy is doing really well.  I'm not sure yet if it's a change in his formula or if it's a new medicine that he's on.  We won't know if this is just a "good" period or if we've found the cure.  But if we don't have an episode in a month or two, then maybe we are home free!  He's been really good for about 2 weeks and he's gained back some weight!  We are so very excited but are holding our breath until we know if it's going to work.

Sunday, July 30, 2006

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 15, 2006

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 20^th 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

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 20^th 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 4^th!

Wednesday, June 28, 2006

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.  They are 95 and still doing pretty well.  They live at home with round the clock care.  My Grandmother had to have brain surgery a month or so ago, so unfortunately she was sleeping and we didn't get to say hi.  But Grandpa was awake a little.  It was nice to see them although we didn't get to talk too much.  We had lunch with my Aunt Jean and Uncle Clarence before heading off to Madison.  It was a nice pit stop. 

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 40^th 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 17, 2006

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 named 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 Arturo – 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.

Saturday, June 10, 2006

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 Craven's 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 100% so 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.

Wednesday, June 7, 2006

We are sitting in a hotel room in St. Louis on our way back from seeing a lot of SMA family friends in Cincy.  It was a fun trip.  Charlie is doing better with his GI issues, but still not back to 100%.  

Monday, June 1, 2006

Charlie seems to be a little better today.  We are suppose to leave for our trip to Cincinnati on Saturday, so hopefully, he'll even be better tomorrow.   If he is still having bad GI issues, we probably won't be able to go.  It's just too scary to be without his "cough cough" on the road.  We've been meaning to put the a converter in our van, but as usual, we are behind or procrastinating...

We had our IEP for Charlie yesterday and it went so well (at least we thought so).  Now we just need to decide if we want to send him and how often.  They would love to have him come full time which is four mornings a week!  I'm thinking maybe two -- but we'll have to see.  Most of our friends homebound their kids so it's scary to even think of sending him at all.  Luckily, we have all summer to figure it out.  I know he'd love it because he is my social butterfly and such a flirt.

We've had Mr. Bear, or Builder as Charlie and Lily call him, here for a visit.  He is a stuffed bear who is visiting SMA families all over the country - heck even in Canada as well as some SMA friends.  We are suppose to document his time here and take loads of photos.  He was suppose to be with us for a week but since we are leaving, he will go to our friend Brett soon.  I think we'll have Mr. Bear back later this summer to continue his visit.  So far he's been having fun with the kids and they love him/

I better run -- I need to get started packing!!!

Monday, May 29, 2006 8:59 PM CDT

I think I jinxed myself with the last posting, but overall 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.

Monday, April 24, 2006

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…