Journal 2008

Wednesday, December 24, 2008

At least I am getting consistent in my bad updating these days.  Here we are almost a month has past again since updating.  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

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

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 

God Bless!

Monday, October 27, 2008

So sorry I didn't update sooner.  We've been home since Friday night!  Charlie did great and travelled home so well.  He summed it up well when he said, "It's good to be home."  I couldn't agree more!

Charlie is only needing occasional Tylenol for the pain.  He is our hero!

Thursday, October 23, 2008

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

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

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

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

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

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!

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  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

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: 


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 on     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

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  occasionally to see lots of photos.

Sunday, June 8, 2008

I'm very sorry I wasn't able to update this site during Charlie's surgery.  For some reason, I couldn't get access while at the hopsital.  Here is an over view of the last few weeks updates . . .

Sunday, June 8, 2008  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  We are on our way home!  Charlie is such a trooper and has only needed OTC Tylenol since surgery yesterday.  We will hopefully be able to make it all the way home tonight, but we'll play that by ear.  Charlie is our hero!

Tuesday, May 27, 2008  We are finally back in Charlie's room from recovery.  He's doing okay, but definitely sore and really wants to cuddle with mommy or daddy. He's ready to play with his computer though so he's on the upswing!   We will restart his feeds today and hopefully be out of here tomorrow. 

Tuesday, May 27, 2008  Ok – It’s 9:50 now and still waiting on the surgeon to come down to tell us how it went.  I really hope that they don’t mess up like last time and Charlie sits in recovery scared without us!  This sucks!

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)

Update…Ok – here it is 8:47 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. 

Monday, May 26, 2008  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

Monday, May 26, 2008

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

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.


Monday,  May 21, 2008

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.

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.  Here is one of the two videos that was made for Lily B...

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

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 and 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 prepare to start her new job.  She will be 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 under Charlie Age Four!

God bless everyone. 

Tuesday, April 29, 2008 

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  . . .

God Speed Angel Skylar!

Saturday, April 19, 2008

We've had a mellow few weeks.  Charlie's had a few playdates with his good friend Mackenzie from school.  He loves having her over to play.  We are getting ready to start taking him back to school soon and he is very excited.  Lily and Charlie love playing Wii and we have to play every day.   Charlie is already a pro at bowlling, tennis and golf.  He and Daddy make a good team when they play together.  

We've been watching a mated pair of Great Horned Owls in our back yard.  They have two babies and it's been fun watching them get so big.

Everyone is staying healthy and Emma is growing so big.  We had her baptism on April 6.  There are new photos of her as well as the rest of the kids under "my sisters" and then Emma's pages.  Check them out!

There are still many of our SMA friends fighting illnesses!  You'd think the season would be almost over, but RSV and the flu are still out there.  It makes me nervous to go back to school with Charlie, but he is anxious to go.  So keep all of our friends in our prayers as well as Charlie so we can continue to stay healthy.

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, 2008

Today 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, 2008

Today 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.  

Saturday, January 25, 2008

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.  I'll post photos soon.

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

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.  I’ll try to get more up soon too.

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.  



Click here for 2007 Journal

Click here for 2006 Journal

Click here for 2005 Journal

Click here for 2004 Journal