Where to begin!  We’ve been having a great summer break so far.  Charlie’s been having a great time now that we have Blue back up and running.  His new favorite game is playing freeze tag. We have to find a neighbor (adult or child – Charlie doesn’t age discriminate) every day we can get outside to play with us.    We go up and down the street ringing door bells until someone can play – it’s too funny.  It’s been nice that we’ve had a mild spring so far.  We’ve had so many nice days to enjoy outside.  Once it gets too hot and humid, it’s hard for Charlie to stay up in Blue for too long.  But we’ve been enjoying it as much as we can!

 

Charlie also has been playing Miracle League baseball again this spring.  We’ve been lucky and have had great cool mornings so far.  Last Saturday was his last game before the season ends until next fall.  There seem to be a lot of kids playing this time. 
 

 

Lily’s been having a busy summer as well with lots of sleepovers and camps so far.  She’s playing softball too.  With the cool weather, I haven’t braved taking the kids to the pool but I’m sure we’ll get there soon enough.

 

We leave on Wednesday to head to the FSMA conference in Cincinnati.  John isn’t coming, so say a prayer or two for the long drive without our wonderful Daddy doing all the packing and driving.  I’m going with my mom and our dear friend Abby, so I’ll have plenty of help.

 

Emma is still our wild girl.  She’s busy and into everything.  We are truly blessed.  That’s my quick update for now.  I’ll try to post photos soon and update about the conference fun when I can!

Happy Memorial Day (almost).  I realized I haven’t updated since Charlie’s surgery way back on May 7.  The surgery itself went well.  Charlie is such a trooper.  On Friday, we were ready to check out to head home!  He was pretty itchy, which we figured out was caused by the Oxycodone that he was taking over night.  They sent us home with a dose of Benedryl.  Between that and the Oxycodone, he couldn’t keep his eyes open.  We set up his Bipap machine so he could sleep in the car on the ride home.  He didn’t make a peep for 2 ½ hours!  We always alternate the Tylenol and the Oxycodone every two hours so that he stays comfortable for the long car ride home.  He did well, but we did keep him on Bipap the whole trip this time (which we’ve never done before).  We even had to stop and cough and suction him for about 20 minutes.  He was never in danger, but he did have some gunk in his chest or deep in his throat that he (and we) wanted to get up and out.  It was the first time we’ve had to use the UPS system in the car and we are very glad that it worked the way it was suppose to work.  I don’t think we’ve ever been as happy to get home.

 

Charlie was in a lot more pain than usual this time.  He usually stops taking the Oxycodone a day after we get home because he doesn’t like the way it makes him feel.  This time, he asked for it for almost a week.  Then he turned the corner and was fine with just Tylenol for a few days.  Now he is almost back to normal.  He still says I hurt him when I carry him up and down the stairs, but it’s not so bad that he wants Tylenol or anything.  We hope that this extended pain is a one time thing and that it’s not indicative for what he’ll have to go through every surgery from here on out.

 

I had a nice Mother’s Day.  I hung close to home since Charlie was still having pain.  Lily and John went to church in the morning and then in the afternoon they had Lily’s soccer game.  It was a mellow day for me – mostly hanging out with Charlie and Emma.

 

We were planning on taking Charlie back to school for the last few weeks, but Dr. Schroth recommended staying away.  She said that with the H1N1 flu still out and about that it just wasn’t worth it.  We agree, but are very sad that Charlie won’t get to finish Kindergarten with his classmates.  His last day will be this Tuesday, so maybe we’ll sneak up for a good bye.  We have been enjoying doing the Web cam with his class in the mornings.  It’s not a perfect system, but it allows him to participate in the class work and to see his friends.  We are planning on doing the Web cam next year when Charlie goes on homebound again.

 

Charlie, Lily, Emma, Nurse Lori, Grandma and I spent a fun, quick morning at the local Farmstead last Thursday.  Charlie had a blast driving Blue around and feeding the goats.  Emma was in heaven.  She caught on to feeding those goats and kept trying to kiss them when they were eating from her hands.  She is such an animal lover already.  Lily was a great big sister.  She helped Emma and Charlie get the food, and she fed her share of those goats too.  She and Charlie ‘panned’ for gems at the mine and then it was time to race home.  Charlie had his teacher coming at noon for school.  It was a quick but fun trip to Deanna Rose.  We’ll be back.  Charlie wants to fish next time and Lily wants to ride the pony – which is funny considering we have a horse she can ride (if we ever have time to get out there)!

 

We celebrated John’s bday this weekend.  The kids had fun making cards and wrapping presents for him.  WE took Charlie to his Miracle League baseball game on Saturday (John’s actual birthday) and Charlie had fun.  It’s great to watch him buzzing around in Blue. 

 

We do have other big news.  We bought a lot.  After years of trying to figure out how to make our house more assessable as well as looking for other houses that would work, we decided to bite the bullet and build.  If anyone out there has ANY ideas of what we need to be sure to do to build an assessable house – please help LOL.  We want to make sure we do it right! 

 

That’s it for now!  Hope everyone enjoys the long weekend. 

Charlie is back in his room after surgery.  He is off bipap and doing okay.  We are having some issues getting the pain controlled, but he is a trooper.  If all goes well, we hope to hit the road home tomorrow.  But one step at a time....

Thanks for everyones thoughts and prayers.  We know that God is good!

Wow!  What a day.  We had to be at UW Children's by 12 so that we could have the X-rays done on Charlie's back for his surgery tomorrow.  It's always scary for any SMA parent to be around so many sick people.  We think to ourselves, "why are they wearing masks, what do they have and how can we keep Charlie safe."  The last place we want to be is at a hospital when Charlie's is healthy and everyone else is sick LOL.  But we luckily got our X-ray quickly and were able to get up to the floor and into Charlie's room.  Then the long day of check in begins . . . . Doctors, nurses, more doctors and more nurses coming in and out until finally peace and quiet.  Charlie is sleeping soundly on his pappy.  It was a tough afternoon.  They had to try three times to place his IV.  It is awful listening to Charlie in pain while they dig at his hand, then his foot trying to get into a vein.  I so wish it could be me in that bed instead of Charlie.  He is so brave.

On a good note, we did all get to enjoy a swim this morning before heading to the hospital.  Lily, Charlie and Emma have so much fun in the pool.  Maybe some day we can get one in our back yard :0)  The kids would love that! 

The drive up to Madison went well too.  Emma fussed more than normal, but how can you blame a 16 month old for getting bored and tired of being in a car seat for 7 ½ hours! 

I better sign off.  Charlie’s surgery is tomorrow at 9:10 – so please keep him in your prayers.  I’ll update when I can.  We hope and pray that it goes as well as last time!

As you will be able to tell, I started an update back on April 11 and never posted it.  So here is our quick update from there.

 

Today, Emma fell and knocked her head (a very common occurance with our wild child).  Anyway, I picked her up to give her some loving and her ear was red!  I though she was bleeding, only to find that she had stuffed a strawberry in her ear!  She is my crazy kid that is for sure.  What a fun giggle she gave me.

 

Charlie had his 6 day of using the web cam to participate with his classroom.  It’s going pretty well and I hope we can figure out a system so that next year it works even better.  Right now they are just doing a trial with Net Meeting.  Charlie has fun seeing his friends, but can’t wait to get back into the classroom.

 

We had a fun Easter with my family (mom, brothers and nieces and nephew)  the kids had fun finding eggs at our house before heading over to Grandma’s to hunt and eat.

 

Lily’s been doing well.  We are looking into finally getting a piano for her so that she can stop using the keyboard.  It’s been three years of piano lessons with the keyboard, so I think she’s ready for the next step. 

 

I guess I’ll stop here – just to get this posted.  The below section is the one I never finished.  Enjoy!  And hope everyone is well.

 

Saturday, April 11, 2009

 

It’s been another few weeks  between updates.  I guess I’ll just have to try to keep up to at least once a month updates at this rate.  I’ll blame it on having my third child.  She keeps me on my toes :0)

 

I’ll start by updating about today.  We had a busy one.  We started out at our Church for the Easter Eggstravaganza.   The kids heard the real story of Easter and then we headed outside for the egg hunt, games and carnival bouncers.  It was a fun morning.  They had all the kids hunt eggs at the same time in different areas based on age, so poor Emma didn’t get to find any.  It was too hard with Charlie and Lily and trying to watch and help there.  But I’m sure Emma will find a lot tomorrow.  The kids planted seeds, made a butterfly ornament and then played in the bounce house.  Lily had a soccer game at 1, so we left after that to have lunch before her game.  I had to miss Lily’s game and she scored a goal!  I was bummed to hear that.

 

Charlie had his good friend Mackenzie’s bday party at 2.  They went to the Pottery Playground to paint piggy banks.  Charlie had a good time and was excited to see some of his old school friends since he’s been on homebound school this winter.  So it’s been a busy day and we are hanging out resting now.  The kids are so excited for Easter tomorrow.  Charlie has been counting down the days ever morning when he wakes up!  It’s been really cute to watch.

 

Yesterday was a great day!  We’ve been trying to get Charlie’s school to use a webcam during class so that Charlie can participate at home.  We had our first trial using Microsoft Net Meeting yesterday.  It worked, although it’s not perfect.  We hope to be able to figure out how to best use the system so that Charlie can “go to school” even when he is homebound.  His teacher isn’t sure how it will work when there isn’t someone there working the webcam for her.  So we’ll see how it all goes.  The kids seemed really excited to see Charlie and Charlie was very excited to see them.  It made him want to go back to school now though.  We are still at least a week away from that since there is still RSV and Strep going around.

 

I recently submitted the following blurp to the FSMA newsletter about my niece Taylor.  I am very proud of her and touched that she chose SMA to do the project on.  So I thought I’d share it here….Thirteen year old Taylor Ruisch was assigned a group project in school.  The project called Imagine It is normally a college-aged assignment where you have to figure out how 100 post it notes can better the world.  Taylor and her group took it on full force.  They decided to do something for charity and chose SMA in honor of Taylor's cousin Charlie Sykora who has SMA Type I.  They made the sign, filled it with 100 post-it notes reading "Thank you for donating to SMA.  Your donation will help children around the world."  They set up a table at 5 Guys Burgers and Fries and raised $115 in two hours.  They educated a lot of people about SMA and even won Best Project for their class.  Taylor said it was great and that they had a lot of fun!

Disney Vacation

 

Day one

 

On Monday, we went to Disney’s Magic Kingdom. We had a wonderful time. Disney is truly a magical place and they really know how to treat kids with special needs. We spent most of our time in Fantasy Land. We rode the Adventures of Winnie the Pooh ride, Scary Adventures of Snow White, it’s a Small World, Dumbo, Peter Pan (twice), we went to meet several characters: Ariel, Cinderella, Belle, Aurora and all of the Fairies. The Fairies had a special surprise for Charlie and waited until everyone was gone so that we could see ALL of them at once. Charlie and Lily loved it as you know Charlie LOVES pretty girls.

On the tram on the way back to the car, poor Emma threw up all over herself and the stroller three times! We cleaned her up and thought she was done. She seemed a lot better and happier. So we loaded up in the van. Poor thing threw up once again all over her carseat. By the time we got home she felt much better, but did throw up a little more. I think it was too much heat and not enough water! She was able to eat noodles and bananas for dinner and slept all night without any other issues. I had to take apart her car seat to wash it and then did my best on the stroller, but it is still pretty darn nasty! Emma is all better though. She woke up Tuesday happy and 100%.

 

Day Two

 

We went to Hollywood Studios on Tuesday. It started off on the wrong foot. We pulled in, parked and it was time to feed Charlie. I realized that I had left the cooler with his food at home. So, Emma and I dropped off everyone and headed back home. As you know, Charlie has special food that he needs! While I was gone, the kids, John and Denise were able to see the HS Musical show. Emma took a short nap in the car which was perfect and we were back in business at the park. We went to the new Buzz Lightyear ride first thing! The kids had a blast. I really wish we would have made it back for a second time, but we were so busy doing other things that we didn’t. We went to see the Beauty and the Beast Show, watched the new Block Party Parade (and Lily was pulled out to dance with them) and then got to meet Bolt and Rhino, Mickey and The Incredibles. They were all so wonderful and nice to the kids. We ended the day by doing the animation drawing class where Lily and Charlie learned how to draw Goofy.

We made it home for a late evening swim, bath and bedtime fun!

 

Day Three

 

Lily and I had a fabulous day! We got to be Trainers for the Day at Discovery Cove. We were in a group with three others and our trainer. We went behind the scenes and saw where the dolphins are housed, where they make the food for all the animals at the park, how the water systems work as well as the back of the Aviary. Then the fun part came where we got to be in the water with the dolphins. Lily and I got to ride on one and learn how to perform tricks with Cap -- he’s the only Dolphin at the park who was born in the wild. He was even in the movie Jaws 3, so that tells you how old he is. He was such a neat dolphin. After the morning with the dolphins we enjoyed lunch and then feeding the sting rays, snorkeling with the fish and even petting a shark! They are working on several nurse sharks so they can do a shark experience just like the dolphin experience. The best part of the day happened in the afternoon when we got to go back in with the dolphins. We held on to Cap and CJ and they flew through the water with us holding on to their fins. Then we did a trick where one dolphin pushed each of our feet and we really went flying through the water. They are such powerful animals and it was such a treat to spend the day with them. Lily and I ended our day playing in the lazy river until John came to get us. While we were at Discovery Cove, Charlie, John, Emma and Denise went to visit Give Kids the World. Lily was sad that she missed going back to GKTW because it is such an amazing place.

 

Day Four

 

We decided to head to Epcot on Thursday. Denise (the nursing student who came with us) didn’t feel well, so she stayed in her room after John bought her some Pepto and Sierra Mist. Anyway, we got to Epcot and saw a few things, but then Lily said her stomach hurt. She, Emma and I went to the infirmary to let her lay down to see if she’d feel better. After about 40 minutes, we left to meet up with Charlie and John. We went to an interaction with Crush and then rode on a ride with Nemo. As we left the building, Lily said that it was all coming up. And sure enough, she lost everything she had in her tummy right into the bushes. Luckily, that was the only time she would throw up. She did get a pretty high fever by bedtime. So we moved her into another bedroom (she was sharing with Charlie) and she did well all night.

 

Day Five

 

Lily woke up better and feeling like she was ready for our last day at the parks. We loaded up by noon and headed out to Magic Kingdom for our final day of fun. We had a great time riding the Buzz Lightyear ride (twice), seeing the Monsters Inc show, riding the Mad Teacup ride, It’s a Small World, Tigger ride and the Snow White ride. It’s always so much fun spending time at Magic Kingdom. We always leave there feeling like everyone at Disney knows just how special and incredible our kids are. We were all sad that our time in Florida was almost over. We enjoyed another swim, then gave the kids baths and started to pack up so we could head for home on Saturday morning.

 

Day Six, Seven and Eight

 

Saturday, Sunday and part of Monday were spent driving, unloading the car at the hotel, setting up medical equipment, feeding the kids and going to bed, only to repack and drive again the next day. The drive home wasn’t as peaceful as the drive down. We could tell that the kids were really tired out and Emma definitely was a lot more whinny and fussy in the car. It was really great to get home Monday afternoon!

Lily had the rest of the week off from school (she gets two weeks of Spring Break) so we just spent some lazy days playing catch up. As fun as vacations are, it’s always so nice to get back home.

Hope everyone is staying healthy, and sorry for the long winded update. Now we’ll start the countdown to Charlie heading back to school and his next surgery on May 7. Time is sure flying. I did post a ton of photos on http://sykorafamily.site.shutterfly.com/

Well, it’s been a month. Maybe I should just resign myself to updating once a month because I’m so bad at doing it lately. It’s 4 a.m. and I’m wide awake because we had some Bi-Pap issues. This is the machine that helps Charlie breath all night for those of you who don’t know. It was working, but making a horrible high-pitched sound. I had to call Apria to have them track down a replacement. So, here I sit three hours later with the new (different) Bi-Pap in hand, but I can’t sleep. So, what a perfect time to update :0)

We leave in the morning for Orlando! We are headed back to Disney for Spring Break. The kids (and John and I too) are so excited. I’m not excited about a 19 hour car trip with a toddler though LOL. I will take loads of photos and try to update while there.

The last month has been busy. So a quick recap:

Charlie has had several fun playdates with two older boys who come over to play DS with him – it’s too funny. And then he had a playdate with a neighbor boy and they played some Wii. He’s enjoying school and his Kindergarten teacher is back from Maternity leave so he’s happy to see her.

Charlie went to a school friends bday party at our local park center. They saw snakes, bugs and other animals and played fun games. He got to go to the party with Grandpa Sykora and John since Grandma and Grandpa were in town visiting.

He was also the star of a fundraiser party that a good friend through in his honor. Charlie was surrounded by more than 30 women so he was in heaven. He loves being the center of attention. The fundraiser raised more than $2,400! Thanks to MB (and family) for holding such a wonderful party in Charlie’s honor. The money is going to Families of SMA (FSMA).

Lily finished her basketball season and did great.

We had a fun weekend of SNOW and the kids had a blast sledding outside (well, Emma didn’t! I’ll have to post photos to show that she HATED her snow suit and then hated being out in the snow).

That’s the main events I think LOL It’s hard to remember a month of events! I did break my crown last night so we’ll be rushing around to hopefully get everything taken care of so we can hit the road! Keep us in your prayers for safe travels, Charlie to stay healthy on the road as a cold would be awful when we aren’t at home, great weather and fun! I’ll write again when I can (or think about it LOL)

Don't forget you can always check out updated photos at http://sykorafamily.site.shutterfly.com/