Journal 2006

Thursday, December 28, 2006 

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

We’ve had a fun few weeks until this illness.  Lily had her holiday party at school a week ago Thursday (Dec 15).  Charlie and I had fun at his school and then I took him home and went to Lily’s school to help with her party.  It was the last day of class until the New Year as well as her holiday party.  It was fun and Lily was ready for a break from school for awhile. 

On Saturday (Dec 16), we went roller skating for our friend, Brett’s birthday.  He also has SMA so it was great fun to see so many SMA kids racing around the roller rink in their power chairs.  Charlie had a blast and Lily did awesome by the end of the party.  She got really brave and ventured out on her own.

On Monday (Dec 18), Lily, Charlie, Grandma and I went to see Happy Feet.  The kids loved it.  It was a cute movie.  Charlie’s secret Santa got him a Happy Feet that dances around when you wind it up.  He loves it even more now that we’ve seen the movie.

Tuesday (Dec 19) was Charlie’s last day of school and Lily came with us to class.  I thought she would have to sit in the corner and play her video game until the holiday party, but Miss Rachelle is so super sweet that she included Lily in the whole classroom routine.  She had fun and Charlie loved having his sister there with him.   The holiday party was so much fun. 

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

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

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

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

Monday, December 11, 2006 

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

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

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

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

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

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

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

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

Tuesday, December 5,  2006

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

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

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

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

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

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

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

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

Thursday, November 23, 2006

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

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

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

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

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

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

Monday, November 6, 2006

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

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

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

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

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

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

Tuesday, October 31, 2006

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

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

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

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

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

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

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

Monday, October 23, 2006

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

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

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

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

Sunday, October 15, 2006

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  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)

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 to see our progress.  You can also join us for the walk!  It’s Saturday, October 7.  For information, you can visit  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   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 4th graders help them pick out a book to take home and they read to him.  He thought that was pretty cool.  It was his job to feed the class gerbil, Seek.  It was a great day.  He had a blast and was so sad when the day ended.  The kids are so wonderful and considerate of Charlie.  It’s so fun!

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

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

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

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

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

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

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

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

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

God Bless!

Friday, July 7, 2006

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

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

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

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

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

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

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

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

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

Wednesday, June 28, 2006

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 40th birthday BBQ.  We got home later that night and were all ready for bed!  But it was a nice way to get back home.

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

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

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

Friday, June 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…

Sunday, April 16, 2006 

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

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

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

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

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

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

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

We hope everyone had a GREAT Easter.

Thursday, April 6, 2006 

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

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

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

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

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

Monday, April 3, 2006 

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

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

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

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

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

Monday, March 27, 2006 

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

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

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

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

Wednesday, March 22, 2006 

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

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

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

Hugs to all.

Sunday, March 19, 2006

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

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

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

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

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

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

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

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

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

Sunday, March 12, 2006

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

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

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

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

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

Friday, March 10, 2006

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

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

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

Thursday, March 8, 2006

This is actually started yesterday and finished today...

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

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

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

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

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

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

Thursday, March 2, 2006

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

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

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

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

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

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

 I’d better sign off.  I’ll post photos and new videos as well so check out the photos and video page.  Hugs!

Saturday, February 19, 2006

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

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

Friday February 10, 2006

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

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

Well, that is our quick update.  I'll take photos of the van too and get them on one of these days...

God Bless!

Monday February 6, 2006

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

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

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

Sunday February 5, 2006

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

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

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

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

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


Sunday January 29, 2006

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

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

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

Friday, January 27, 2006

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

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

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

Tuesday, January 23, 2006

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

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

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

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

Wednesday, January 18, 2006

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

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

On a positive note, Charlie is still doing well with his new formula.  I'm hoping this will work for awhile because he lost more than a pound and a half during the last GI episode.  We did go to the GI doctor on Monday, but he really didn't have any answers.  He thought that everything looked okay and couldn't think of anything that would cause the problems that he was having unless it was the diet.  He said to keep him in the loop and we would try to figure it out when and if it happened again...

So we hope that Charlie will gain back some of his lost weight.  We are adding in more calories and fat trying to gain back what he lost.

Thursday, January 12, 2006

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

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

Sunday, January 8, 2006

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

Finally, today he’s a little better than he has been, so maybe I’ve figured the diet part out, but I still worry that something is going on. 

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

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

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

  Blessings and hugs to all of you.

Sunday, January 1, 2006

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

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