2005 Journal

Friday, December 30,  2005

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

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

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

When we got back to Grandma/Grandpa’s Mona, Anna and Sarah were there.  The kids played until Rick got there and then we let all the kids open the rest of the presents.  Lily, Sarah and Anna went sledding behind Grandma’s house for a while too.  I didn’t get Charlie bundled up so I feel bad.  But he was napping so didn’t know what he missed.

Tuesday morning we met some high school friends of John for breakfast (Matt and Susan Keeler).  It was nice to see them.  They are expecting their first child this year, so it was fun to talk about all the excitement for them.  Tuesday afternoon John’s cousin and his family stopped by.  They have four girls ranging from 14 – 22!  The kids were nice enough to play the new princess game with Charlie and Lily.  It’s funny to be around a couple that are so close to our age, yet have kids who are 14-22.  We’ll be in our late 50s by the time that happens to us!  It was so nice of them to come visit.  They live about 4 hours away.  It was fun hearing stories of the young cousins (John, Donny and Mona and their siblings) growing up together. 

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

Thursday was the day we headed home.  After a nice breakfast with the family we hit the road.  We were supposed to swing through Waterloo, Iowa to visit my Grandparents who are 94/95.  But my aunt told us that the flu had been going around the house and all the Sure Care workers too (my grandparents still live at home, but have 24 hour care).  So we thought it was best to head home.  We got home early enough to open the rest of the presents that Santa brought.  I think the theme of the week was present opening!  We still have Grandma Ruisch (my mom) and my brother’s and their families’ presents to open.  This is the longest of present opening season ever!

Friday, Maggie (our dog) came home.  She had a nice big gash in her side.  Apparently, another dog while playing bit her at the boarders – or so our vet thought.  So we had to get stitches.  We also went to the pet store to pick up a present Santa asked us to buy.  A guinea pig!  It’s for Lily, but Charlie loves it too.  We are keeping low key for a while to let “Sophie” get use to us.  I’m still not quite sure what we were thinking.  Another animal to take care of for mom ;0)

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

It’s so hard to believe that it’s almost New Year’s!

Thursday, December 22,  2005

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

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

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

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

Tuesday, December 20, 2005 9:05 PM CST

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

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

Charlie, Lily and I decorated a gingerbread house the other day. The kids had fun and I think the house is beautiful :0) Lily ate so much of the decorations that she had a tummy ache. It was fun. I'll be sure to add photos soon.

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

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

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

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

God Bless, Merry Christmas and all



Monday, December 12, 2005

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

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

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

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

Sunday, December 4, 2005

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

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

MORGAN5 (2).JPG (45003 bytes)

Friday, December 2, 2005

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

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

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

Wednesday, November 30, 2005

y good so we've been outside playing a lot.  It's so hard to believe that we are less than 4 weeks for Christmas!  

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

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

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

Saturday, November 19, 2005

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

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

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

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

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

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

Wednesday, November 16, 2005

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

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

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

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

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

Big Hugs!

Monday, November 7, 2005

 We have been having the BEST weather her lately.  It's more like spring than Fall.  It's been so nice that we've had Charlie outside in his new Power chair every day.  He loves it so much - he just sings and sings.  He is getting better for sure, but still has a long way to go.  Both kids are staying healthy although Lily has a little cold.  We will just try to keep her away from Charlie and his toys - which is next to impossible :0)  You'd think she doesn't have enough toys of her own.

Today, Charlie has an appointment with the MDA clinic here in town.  I'm going to go one more time just to stay in the system, but not sure we need both KU and Children's Mercy.  I'm going because I thought it might be a great way to show someone how Charlie has his issues with his tummy.  We are in the middle of trying to figure out what formula concoction works for him.  I think we are going to battle with this always.

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

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

Wednesday, November 2, 2005

Ok -- I'm way behind in posting.  I can't believe it's already NOVEMBER!  Time is flying.  We've had a busy few days.  Sunday was John's and my 6th wedding anniversary and Monday as you know was Halloween.  The kids had a great time.  Lily was Sleeping Beauty (not Cinderella I was wrong) and Charlie was a Crocodile :0)  They both went trick or treating around the neighborhood, although Charlie wanted out of his costume so he and I came home early.  It was a beautiful evening.  We were so afraid it was going to be raining since it rained all day until about 4.  Thank goodness for small favors.  I'll post some photos soon.
 
Earlier on Monday, we had the best Halloween present there could be!  Charlie had his new power chair delivered.  He looks so wonderful in it and it supports him so much better than the other/first chair we had.  He loves it.  I think he'll be a pro in no time.  I'll post videos too if you want to check it out.
 
Tuesday was my little brother's birthday and today was my mom's birthday.  So, we all went out to a Japanese Steak house for dinner.  Charlie was so thrilled by the big fire they do before cooking.  He was so smiley and wide-eyed.  I'm glad he was able to see both our cook top and the one across the way being lit up.  His smile was contagious!  What a boy -- he loves running into things in his power chair and he loves the big fires.
 
Well, I'm off to get some photos downloaded.  Charlie and Lily are both doing so well, although poor Charlie is having some stomach issues again.  I think we'll have a constant struggle with that :0(
 
Big hugs!

 

Thursday, October 27, 2005

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

Wednesday, October 26, 2005

Charlie had his first wheelchair fitting on Monday.  It was awesome.  He loves it and drove it backwards and in circles right away.  He thought it was so fun.  We might have it next week.  We have a short video from our test drive.  I'll try to post it this week if you want to watch it.  

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

Friday, October 21, 2005

I just heard from Laura at SMA Support that she's received $1,379 from the dollar campaign. What an amazing start from just sending a simple email.  I hope to keep this going.  If you are reading my journal for the first time and don't know what the dollar campaign is, keep reading way below to a post on October 3.  And then if you feel compelled, grab a dollar, $5 or whatever you want (we even got a $100 bill).  Write SMA Hero Charlie on it and send it in.  And then, do SMA and CHarlie the biggest honor and copy the message and send it on to your email list.  The more people who learn about the disease is the best way to help Charlie and all of the other SMA Heros in Heaven and here on earth.  A BIG Thanks to everyone who has contritubed.  I know that there are a lot of bills rolling around out there with Charlie's name on it :0)

Charlie is doing great.  He hasn't had any problems since Sunday so we are once again just cruising along.  We go in on Monday to have our first fitting for Charlie's new wheel chair.  How exciting is that!  Lily is still doing well too.  She is a wonderful daughter and big sister.  We are truly blessed with two incredible children.

Wednesday, October 19, 2005

Well, Charlie has us snookered again.  He's been totally fine every since Sunday's incident.  We won't question it, we'll just be glad that he is well.

We were very sadden to find out yesterday that another little girl, 5 month old Hailey, joined the angels in Heaven yesterday.  I'm in shock.  This was a family and little girl whom Kristal and I have been trying to help.  Her mommy contacted us and we were helping her get up and running on the NIV protocol and she was wanting to try the AA diet.  It always hits so close to home.  I never met Hailey or her mom Allison, but they were part of my family.  Please add them to your prayers.

Sunday, October 16, 2005

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

Saturday, October 15, 2005

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

Friday, October 14, 2005

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

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

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

Wednesday, October 5, 2005

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

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

Monday, October 3, 2005

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

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

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

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

SMA Support Inc.
PO Box 6301
Kokomo, IN 46904-6301  and last but not least

4. Forward this email on to all of you family and friends.s.

Where is your money going?

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

Thanks and God Bless!

Kim Sykora

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

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

Wednesday, September 28, 2005

Well, we've got the first official cold of the season going.  Charlie is handling it pretty well, but we are definitely having to cough and suction a lot!  We are hopeful that it's not going to go into his lungs.  So far so good though.  We are so thankful that we have all the equipment we need to help him get through this cold.  Will keep you posted.  We are hoping that he'll be well enough to go to the walk this weekend.  He has so many friends walking or running for him that we know he'd love to be there.  We will keep our fingers crossed, but most likely Charlie and I will have to stay home.

Everything else is going well.  We are trying out a new power chair for Charlie tomorrow.  Then we'll just have to wait to see if we can get it approved.  Charlie has been having problems with his current chair.  It doesn't support him enough in either the power base or the manual base.  Anyway, we are excited to see how he'll do if we can get him a new chair.

I better run get dinner.  

Sunday, September 25, 2005

Well, once again I'm behind catching up.  Maybe it's because we've been so boring that we have no news...  Charlie had his bi-annual appointment with the Rehab clinic here at Children's Mercy.  He is doing great.  The only thing that got me a little upset was meeting with the orthopedic surgeon.  We had X-rays done of his hips and back for a baseline last May.  When the nurse called with the results, we were told that his hips were definitely sublex (Not sure how it's spelled, but meaning out of socket) and that his hip sockets weren't really formed.  This wasn't unexpected since he doesn't stand and hasn't ever besides in his stander.  And then we were also told that he has a 10 degree scoliosis started.  We felt quite relieved that it was so minimal.  Well, I wanted to talk with the orthopedic surgeon to find out about the X-rays and what we should start doing.  He looked at the same film from June and told me that Charlie has between a 22-29 degree curve!!! Not sure how the first look could have been so wrong.  I know that scoliosis is something that we will have to deal with since Charlie has no muscle help to keep it straight, but I didn't think it would be so much worse than the 10 degree we were initially told.  So, now we will start seeing Dr. Sinclair (the ortho) twice a year and get X-rays as well... then we will go from there.  If the curve gets worse faster, we'll have to figure out our game plan.  Other than that, he is doing GREAT!  We couldn't be happier.  He's so smart and staying so healthy.  We are so proud of him.

Lily started soccer last weekend.  It's too funny watching 4 and 5 year olds playing soccer -- or should I say mass confusion around a ball.  There has been at least one good boy in each game who monopolizes.  I bet they have older siblings who play.  Lily is a little behind, but I'm sure she'll catch on.  Charlie loves yelling "go Lily" on the sidelines or cheering when anyone cheers --whether our team moms and dads or the others -- he is unbiased.

Next weekend, is the big SMA Walk and Roll.  This will be our second year to participate.  John's sister and brother in law are coming in to walk with us with their kids.  Lily is so excited to see Anna and Sarah.  I hope the walk is a big success.  I already have more than $1000 in sponsorship and so many of our friends and John's co-workers will be walking again.  If anyone reading this wants to sponsor me -- just send a check to me made out to FSMA- KC Area Chapter.  Or you can sign up to walk at http://www.roelandpark.net/roefest/runwalk/raceinfo.htm

Well, I better get to sleep -- I'll try to update photos soon.  Hugs to everyone. 

Wednesday, September 14,  2005

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

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

The only bummer to all of this is that I thought I had Charlie's g-tube issue taken care of, well, it's not!  We are going to have to figure it out.  I'm afraid that maybe he doesn't do well with juice anymore.  I'll start the whole taking things out of his formula thing again.

On Monday, we  went to lunch with two other SMA families (Kristal and Brett and Claire, Lauren and Natalie Gibbs).  We went to eat before the check presentation ceremony from the fundraiser we did last May.  We raised more than $19 K for FSMA - KC Chapter.  I had also given Natalie almost $2000 earlier that was directly to FSMA-KC Area Chapter -- so we raised more than $20 K total.  Not bad for our first year :0)  I have great photos from that too.  The kids and Natalie and Kristal were also on the news.  You could only see me behind Charlie from the waist down.  They showed a little clip at the 5, 6 and 10 news that evening.  It was fun seeing the kids on TV.

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

Thursday, September 9,  2005

Hello – once again, I’m behind on updating.  Both Lily and Charlie are having their big birthday celebration with families and friends this weekend (I know 2-3 weeks after their bdays, but it just worked out that way)…  I’m busy trying to get things done for that.  It’s going to be embarrassingly large :0) Next year, we’ll have to figure out something else.

It’s been a weird couple of months for Charlie.  I haven’t said anything, but he’s been having GI issues and its been getting progressively worse.   About 2 months ago, Charlie started having gas issues - what we call burping problems.  With his Nissen Fundoplication (for those who don’t know what a Nissen is http://www.geocities.com/fundofamilies/description.html ), he can't burp.  He will start sort of gagging, sometimes even drooling out the side of his mouth.  We immediately open up his g-tube to vent him and he has really bad "burps".  If Charlie couldn’t push it out, we’d have to help him by pushing on his tummy.  It was getting steadily worse and was happening 10-12 times a day and all night too.  We couldn’t figure out what was causing this.  We hadn’t changed anything in his formula that he gets. But finally, two days ago with the help of several of the ‘diet guru moms’ we decided to take all the additives out of his mixture and just give him Tolerex and water.  (Tolerex is the basis of the formula we give him. It’s an adult amino acid formula) I was hoping that doing that would immediately solve Charlie’s issue.  It took a whole 48 hours, but I think he’s better.  I’m going to knock on wood now, but he hasn’t had to “burp” all day.  I am hoping that this will continue.  I will start adding back his baby food and supplements so I can get his calories up.  Please pray that he’ll continue to do better.  It was so sad to watch him have his “burps”.  He would be so uncomfortable – so much that he couldn’t talk.  But the second he’d get the air out – he would be happy and smiling. 

I had a long talk with another SMA mom last night.  It’s been hard trying to figure out how to make Charlie better.  We’ve been so lucky that all we’ve had to do since we found out that Charlie has SMA was follow the “normal” rules and procedures to keep him healthy and well.  This problem was the first time we’ve had to try to figure out what works for Charlie.  I am so grateful to have this army of moms who are living with SMA to help us. 

I’m hopeful that we’ve kicked this problem in the hinny. 

Thursday, September 1,  2005

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

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

For those of you who like to sign our guestbook -- it's not working right now.  Shoot us an email to say howdy.  We miss hearing from everyone.  I'm off to bed...  Hope everyone and their families are well.  Prayers for the victims of the hurricane.  God Bless.

Thursday, August 25,  2005

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

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

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

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

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

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

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

Hugs and blessings – Kim    Happy Belated Birthday Charlie!!!

Wednesday, July 20,  2005

 We've had another busy week.  Yesterday, we had plans with two other SMA families to go to the petting zoo and then  to the pool.  We've had no rain for months it seems, so what does it do?  Rains all morning.  It wasn't even in the forecast!  So, Brett and Kristal (just one of the families) came over instead.  We played all afternoon and ate pizza.  I'll post a cute photo of Lily and Brett eating  pizza while Charlie watched.

Today, Charlie had a fitting for a new TLSO and then PT at our local hospital.  Then we had to run to the DME because a screw fell out of his chair.  We got it fixed, but ended up leaving it anyway.  They have his new head support, so they wanted to work on his chair to get it put on.  We are very excited!  We went home with their demo chair instead.  Then Charlie was off to Swim PT.  It was his first session with the new PT.  He loved it!  Sarah (the PT) was wonderful and Charlie had a  blast.  He got to play and move his arms and legs so much.  He was so sad when we had to leave.  I know he'll look forward to it every week.  Then it was home for a nap.  After his nap, we went to visit another SMA family.  Liz and Kalair.  Liz just had a baby, so we went to meet the newest member of their family.  Turo (short for Arturo) is adorable.  Lily and Charlie both had a great time holding him.  I'll put a video clip as well as photos up on the site soon.  Then home and to bed!  Whew, I'm sure Charlie is ready for sleep -- although he is up there singing as I type.  He should be exhausted because I know I am :0)

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

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

Monday, July 11 2005

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

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

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

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

Wednesday, July 6, 2005

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

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

I'll add a video of Charlie dancing to the fireworks as well as some photos.  Check them out!  Just remember that Charlie dancing is his stomach and head . . .

Saturday, July 2, 2005

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

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

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

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

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

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

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

Friday, June 17, 2005 2:04 PM CDT

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

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

Hugs to all.

Thursday, June 16, 2005 4:36 PM CDT

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

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

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

Catch more later.

June 16, 2005    

Quick update. 

Lily threw up yesterday morning several times.  She had a fever of 102.  She slept on and off all day – which is so unlike her.  She finally wanted rice and a banana late last night.  She kept it all down.  She woke up this morning totally herself.  Please say prayers that Charlie doesn’t catch it.  It would be so awful for him.  With his Nissen, he doesn’t have the ability to throw up.  I hear you have to just open his stomach tube, but I can’t even imagine.   We leave for our trip in two days.  So please pray that we all stay healthy.

Hugs to all!

June 12, 2005    

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

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

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

June 7, 2005    

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

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

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

Hugs!    

June 3, 2005    

I don't know what weird thing was going on with my computer, but I'm back and didn't have to do anything to fix it.  Very weird that I couldn't get in to edit the site.  Oh well.  I want to Thank everyone who put in so much hard work to make the First Annual Barbecue Blues a success.  We had more than 300 people there.  I still don't have final numbers, but I'm thinking we'll have between $20 and $25,000 raised for the FSMA-KC Chapter.   I've heard a lot of compliments about the party and again, can't be grateful enough for the committees hard work.

Charlie and Lily are both great.  We are getting ready for our two week vacation in a few weeks.  We are heading up to Philly to go to the FSMA conference.  Grandma and Grandpa Sykora are meeting us there.  We just have to decide what we are going to do outside of the conference.  

Lily's yelling -- so better run.  Hugs to all.

May 31, 2005    

I've been having issues with updating the web page -- so sorry for the delayed update.  The party went awesome.  I'm just testing right now to see if this will save.  I'll post more later.  Charlie and Lily are both  great.  Hugs!

May 20, 2005

Just a quick update.  All is well here.  Charlie and Lily are finally both healthy (hope I am not jinxing us).  We are all busy trying to get ready for our big fundraiser next Thursday May 26.  It should be loads of fun, but there is so much work to do.  We'll let you all know how it goes.

Charlie, Lily, Grandma and I went to a place called Deanna Rose Farmstead on Tuesday.  Charlie loved it as much as Lily always has... he got to feed the goats, touch a ton of fish that Lily caught and ride a hay rack ride.  He had a blast.  We'll post photos soon.

David got out of the hospital on Thursday -- he still has a Pic line to do IV antibiotics at home, but he's just glad to be out of the hospital...

Look for us on Channel 5 TV on Sunday.  We are going on to talk about SMA and the fundraiser.  We'll be on live at 10:15...

Hugs to all!

May 12, 2005

We have Charlie healthy and happy again :0)  But now, Lily has a low grade fever.  Please pray that it's nothing and that Charlie doesn't catch anything new.  

Also, please pray for Uncle David (my brother).  He is in the hospital with what might be a brown recluse spider bite.  They don't know what it was for sure.  But he's on heavy pain killers and IV antibiotic.  They want to keep him for 2-3 days!  He went to the doctor last week for what he thinks was a spider bite.  They put him on antibiotic, but it didn't help.  Now, he's in the hospital.  We need him out because the big three day event is next week -- and he's one of the main people in charge - yikes.

Lily's last day of school is Wednesday.  It's hard to believe that her first year of school is over (pre-school, I know, but still school).  Charlie and I look forward to having a lot more fun now that she's home.  We can't wait to get to the pool in a few weeks.

Hope all is well with you and yours.  Hugs!

May 12, 2005

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

He had a lot of fun driving his chair today.  He gets such kick out of running into things still.  Now that the weather is nicer, we'll be outside to do it more.  Maybe we won't get so many dings in our walls now :0)  Hugs.

May 10, 2005

I think both Charlie and Lily are on an upswing.  Hopefully, their colds are almost gone.  They both had good days.  Charlie had a little crackle in his chest, but we were able to get it out with his cough machine.  We thank God that we have the equipment we have to help keep him out of the hospital.  We have a night nurse coming tonight and I'm so glad.  Charlie's alarms have gone off too many times to count the last few nights.  The cold makes it hard to keep his stats up sometimes at night.  I am looking forward to some good sleep.  

We have our big charity fund raiser in two weeks.  I'm getting nervous about that as well..  It should be a fun party, but you never know how well it will be received.  It's a bad weekend for a lot of people with the lake, so pray that we sell enough tickets. I'm off to bed.  Hug your kids and kiss your spouse.  You will never have enough time with the people you love.

May 7, 2005

It's so hard to believe that one year ago today, John and I walked out of the neurologist appointment feeling like our world had crumbled down around us.  The doctor had just told us that Charlie most likely had a neuromuscular disease called SMA.  He then sent us home after telling us that we needed to think hard about how aggressively we wanted to intervene as well as quality of life issues.  We both went home deflated.  What would happen to our beloved little boy Charlie.  How could something so awful be happening.  I had to jump online to find more out about this dreadful prognosis that we were given.  What we initially found online was disheartening.  The majority of children diagnosed with Type I SMA don't live to see their second birthdays.  But then we found hope.  Articles written on the FSMA site by Alan Freedman about his Type I son who was 4, then 5 then 8.  It talked about Bi-Pap machines, coughalator machines and all sorts of other equipment.  But more than anything it talked about hope.  

We contacted FSMA and were put into contact with an area mom and her 4 year old Type I little girl.  They were more hope.  They  introduced us to a new world of medical equipment and special diets.  I thank them in my prayers daily for showing us that we could find a way to help make Charlie's life better.  We have been blessed with a lot this past year -- the support and help of our family and friends as well as a web of new friends -- doctors, therapists, nurses, other SMA parents.  I learn a lot every day from my SMA Support group and will forever be grateful.  Our live is very rich.  Charlie is a blessing and we are lucky that God chose us to be his parents.  

Looking back, it's hard to believe it's been a year since SMA entered our lives, but it's also hard to believe it's only been a year.  We've been through a lot and look forward to many more years with our beautiful children.  Whatever the future holds, we are blessed.

May 6, 2005

Charlie and I had a big scare today.  We went through our morning routine of coughing and suctioning him.  He still has his cold, so his nose was very congested.  I then put him and Lily in the car to take Lily to school.  On the way there, Charlie started sounding gunky, but okay.  After I dropped Lily off and was driving through the parking lot of school, Charlie started gagging and seemingly choking.  I pulled over.  I didn't have the suction machine with me, but had a bulb syringe.  I suctioned a ton out of his throat and nose.  I knew I couldn't drive home with him sitting up in his car seat, so I laid him down on my lap and drove home.  I was so freaked and scared.  I had all sorts of horrible thoughts of what could happen.  Charlie did well and when I got him home, we did his long routine of chest physiotherapy, postural drainage, coughing and suctioning.  He was fine the rest of the day.  I realized two things.  One, when he's this sick, it's hard for him to swallow the drainage when sitting up so upright and two, I will never leave home without his suction machine again.  I know it was a small scare and not as bad as some people have, but I was scared.  I really hope Charlie gets over this cold quickly.  It's been a long week. 

 May 4, 2005

We've had a crazy few days.  Charlie came down with a runny nose a few days ago and had a low grade fever last night.  We've been diligently using his cough assist and suction machine to try to keep it from turning into anything worse.  He seems to be getting better today and no fever, so that's good news.  We've been so lucky to avoid anything bad this cold/flu season.  Keep him in your prayers that we can fight this cold quickly.  We've had a ton of great advice and support from my online friends (other moms with SMA kiddos).  I don't know what we'd do without them.

We've had such a weird spring. It's been unseasonably cold.  We are so ready for warm weather.  Hope the rest of you are keeping warm.  Hugs to you all.

Update -- it's now evening and Charlie is having a rough night.  We've had to cough and suction him a ton to keep him from being all stuffed up.  We pray for a good night and that he can get through this cold without any problems.  Hopefully, I'll have good news tomorrow morning.

April 29, 2005

It's been an uneventful week.  Charlie keeps us laughing and smiling.  He just sings and sings all the time.  You'd think that he and Lily would be sick of Annie by now.  But, we have to watch it at least once a day.  And they both just sing their little hearts out with every song.  

We are working hard to get ready for the charity event next month.  I always forget how things come down to the last minute.  It's hard to believe Memorial Day is so close.  Hopefully, we'll be able to raise a lot of money for FSMA.  

I'm still frustrated by the video issue.  I can't seem to get them on our site.  I think it's working, but once I close down, it never does.  Hopefully, someone will help me figure it out soon.  Hugs to all.

April 25, 2005    

We had a busy weekend.  We moved Charlie out of a crib and into a big bed!  It was more for us than him.  But it will be great to be able to sleep in the room with him if he is having a bad night.  I think John and I were getting tired of being up and down some nights up to 7-9 times :0)  Last night, I crashed in there after the third time up when it was only 1:45.  We both slept great after that.  I think he likes the company.

We went to a charity event on Saturday night for ITS --Infant Toddler Services of Johnson County.  This is the group of therapist who come to our house for Charlie's therapy twice a week.  We went with some other friends and had a nice time.  It was a tear jerker evening thought listening to some of the parents stories and how much ITS had helped them.  One woman read a poem called Welcome to Holland written by a woman who has a special needs child.  Both John and I thought it was a perfect analogy.  Check it out if you want.

Charlie and Lily are both doing great.  Charlie continues to amaze us.  He is the most happy person I have ever had the pleasure of knowing.  He lights up our lives.  Hugs to all!

April 20, 2005    

So far it's been a good week.  Charlie is doing great.  We had a check up on Monday down at Children's Mercy and his doctor, OT, PT and nurse were all gushing over how well they think he is doing.  He is such a strong boy and we are so proud of him.  He was singing and laughing so loudly that the nurses said they could hear him way down the hall.  He is such a flirt.  

We did have some sad news with our SMA family.  We lost two little angels this week to this dreadful disease.  Kaydence was just 22 months.  We met her and her mother and aunt at the last FSMA conference.  Our hearts go out to them.  Then a little girl named Larissa whom we didn't know.  I know she had been struggling for awhile now.  Say a prayer for both of these families and may God comfort them.  Blessings and hugs to everyone.  We'll update again later.

April 18, 2005

We are back from Des Moines.  It was a quick, but very fun trip.  Charlie and Lily had fun playing in the pool with their cousins Anna and Sarah.  And Charlie loved all the attention from Anna.  She was so good with him.  Held his hand, played with him and hung out with him while Sarah and Lily played.  It was a great trip.  Charlie traveled so well again.  He and Lily watched Annie on the drive up and the drive back.  They both crack me up with how much they love that movie.  Charlie and Lily know all the words.  It's too cute.

We are all well and looking forward to a fun, healthy summer.  We hope the same for all of you.

April 14, 2005

It's hard to believe it's been almost a week since last post.  I still am trying to play catch up from our two week trip.  We leave tomorrow for a quick weekend in Des Moines.  We go every year to meet up with John's sister and her family.  We stay in a hotel and the kids get to swim and visit.  Lily always  has a blast.  Hopefully, the pool won't be too cold for Charlie.  John's sister is from Minnesota so Des Moines is the half way driving point.  I'm looking forward to seeing everyone, but wish I didn't have to pack again :0)  

Charlie is doing great.  We have a day nurse, Cindy,  two days a week and Charlie loves the all day attention.  We also have a night nurse once a week.  It's nice to sleep more than 2-3 hours at a time.   Charlie is loving his stander.  Stays in for about 45 minutes to an hour.   I think he enjoys the different view from up there.  He also is doing well in his power chair.  I know he loves to drive.  He is getting better, but has a lot of work to do.  I'd better get back to him.  Barney is almost over.  Hugs!   

April 7, 2005

Well we made it home in one piece!  We had a fabulous time in Florida.  The weather was beautiful and the beaches on Ft. Meyer Beach were awesome.  Charlie and Lily had a blast playing on the sand and in the pool.  They are both my little water bugs.  Lily amazed me with her ability to swim under water :0)  And Charlie yelled for "wa wa" whenever we'd pull him out of the ocean.  One thing we did learn though, is not to drive to Florida during Spring Break/Easter.  We had such a trip on the way home.  Loads of traffic, bumper to bumper.  Accidents, delays, construction... We didn't think we'd ever make it home.  I'll be sure to post a ton of photos later.  I only took 194!!  The joys of digital cameras :0)  Hugs to everyone.  We hope everyone had a wonderful Easter.  

March 20, 2005

We are off on vacation tomorrow for a few weeks.  We are driving down to Florida with my Mom and meeting John's parents.  Everyone is healthy and happy and looking forward to great weather and fun.  Will update upon our return.  Happy Easter everyone!

March 14, 2005

We finally had some great weather here and also had a ramp to get Charlie's chair outside.  We were only able to go on Saturday because it got cold and windy again on Sunday.  Charlie had a blast.  He was able to roll around with some of the neighborhood kids in our driveway.  He is definitely getting better, although he still loves his circles.  He would go around and around and say Mama when he saw me and then Dada then Mama -- it was so cute.  Around and around he went.  He'd go straight and into the grass.  It was a hoot.  We are so anxious for some nice weather so we can get outside in his chair every day.  He loves to drive.  You ask him if he wants to drive and he smiles and says "drive, drive".  It's too cute.  

We are all healthy and well.  Keep our fingers crossed that we've avoided anything bad this year.  With the late start of the flu season, we know we aren't out of the woods yet, but so far so good :0)  I'll post a few photos from this weekend.  And I'm still working on that video.  Hugs to all.

March 11, 2005

Well, we've all been healthy for two weeks.  So glad that Charlie seems to have avoided catching the fever/cold that Lily  had.  They are both doing well.  Charlie is having so much fun driving his chair.  We actually go straight a lot of the time.  I know he has a long way to go, but I'm so proud of my little man.  He continues to amaze me.  We are excited, but nervous about our upcoming trip to florida.  It will be a long drive and I can't get over being anxious that I'll forget to pack something important for Charlie.  Loading up the car with his stuff alone, feels like we are moving :0)  I'll post some more photos of him in the chair soon.  I tried with the video and it loaded, but then didn't work... I'll keep trying.  

March 5, 2005

I wrote a long update and for some reason it didn't save.  So, here is a quick update.  Charlie is doing well.  He never caught the cold Lily had/has.  Hopefully, he'll totally escape it.  He is teething hard though.  He was so cranky last night.  I had to rock him for 45 minutes when he woke up at 10.  His heart rate was elevated enough for the alarm to go off.  While holding him/rocking him, he was fine.  Second I put him back in bed, up shot his HR.  I really think when the blood rushes to the gums while lying down, it really causes him pain.  But that's just my guess.  Charlie is still having a blast driving in circles in his power chair.  He goes straight every once in awhile too.  We are waiting for a ramp so we can get him outside.  It is too adorable.  So far, Lily doesn't seem jealous or ask to drive.  I think she understands a lot more than I give her credit for sometimes.  Lily is over her fever as of last Monday, but still has a runny nose.  Pray that Charlie avoids it all.  Again, we are blessed by Charlie's health.  Hugs and blessings to all.

February 27, 2005

Ok -- I have been bad.  I should have posted right away on Thursday and now the weekend is over and I'm just getting around to this.  Charlie has power!!!  He got his chair delivered on Thursday morning.  He is really good at turning around in circles and enjoys himself so much.  He definitely knows how to start and stop -- but likes to give a grin saying "stop, don't think so" when you ask him to stop.  We reallly need a ramp to get him outside to drive now.  The house has a lot of obsticals...  I'll post some photos and I really need to learn how to put a video on because I have several cute ones.  

On the other hand, Lily has some bug.  She's had a fever for a few days and really not acting like herself.  It's so hard to keep her from touching Charlie, handing him toys etc.  I pray that Charlie doesn't catch it.  He's been gunkier than normal, but only had a low grade fever one day.  I think he's is just related to teething, but again, we just don't know.  So prayers that both kiddos get 100% soon and that Charlie doesn't get anything bad.

There are so many SMA friends who are under the weather.  Please include them in your prayers too.  

February 23, 2005

First, we want to wish our good friend Kalair a very Happy Birthday!  She turns 5 today.  Her mom, Liz and she have made such an impact on our lives.  We are blessed to have them as part of our SMA Family.  Happy Birthday Kalair!

We had an adventurous day yesterday.   First, I thought his mic-key button seemed like it could pull out a little too far.  I checked the water level and it was low.  So, I added water and waited about an hour to an hour and a half -- checked again, and it was low again.  So obviously it was leaking.  I knew I had to change it.  It went very smoothly.  Charlie didn't bat an eye.  It was nice to change it when it wasn't in a panic like the first time.  So, one more thing I don't have to worry about any more. I just wonder why we've had two go bad in four months -- when they say they should last 6-12 months???  

Next we went to drive Charlie's power chair again.  They are trying to get everything set for us to bring it home.  They promise by this Friday we'll have it here!  We are so excited.  Charlie just goes "wheee, wheee" all the time he's driving it.   He loves it.  It then broke my heart to come home to have him get his RSV shots -- he gets one in each leg.  He is such a trooper.  Cries only for a minute and then he even smiles and laughs with the nurse.  He forgives so quickly.  

Last night has me worried though.  He slept well, but early this am -- his heart rate kept going up -- enough to cause his pulse/ox to go off.  I think I was in there 4 times just for that.  I held him for about an hour and even that didn't bring his heart rate down to normal -- it was only in the high 150s to 160s, but still much higher than normal.  He also had a lot more congestion.  I'm not sure if he's teething and that's causing discomfort and congestion or if he's coming down with something.  I was able to suction a lot more mucus than normal.  So please keep him in your prayers that teething is causing all this and that we aren't heading towards being sick.  Today, he's doing well -- still sounds a little congested and definitely wanting to chew hard on things.  He's also not wanting to eat -- thank goodness I can keep him fed with the tube...Then last but not least, his feeding pump was acting so weird last night.  I think the alarm on that went off 3 times as well.  I finally turned it off at 4:30 because I got tired of it waking me up on top of Charlie and his pulse/ox.  It worked great for the first 4 hours and then the alarm went off saying "no seal" -- I'd fix it and an hour later it would go off again.  Very weird.  All these bells and whistles and machines just wear me out some times :0)

February 19, 2005

Our hearts go out to Ange and Alyssa Trick and their family.  Their angel boy, Jacob, flew to heaven tonight.  He and Charlie were only days apart and both had SMA Type I.  Jacob showed true courage and spirit by fighting so many illnesses.  He and his family made such an impact on our lives.  He will be missed.  Blessings and hugs from all of us...

February 18, 2005

Well, Charlie and I made the news last night at both 5 and 9 and then this morning on the Fox News Channel.  I hated myself on TV, but thought Charlie and his friends Brett, Kalair, Lauren and Clare were all adorable.  (all of these kiddos have SMA).  So that's fun.  We received great press about our new event.  I love raising awareness for SMA -- as well as money to find a cure.  Now, we are just struggling to find a name for the party.  We hope to raise a lot of money and awareness!   Hope everyone has a great weekend. 

February 17, 2005

Things have been going well.  Charlie and I just got back from a press conference.  A group that I've been involved with for a long time are starting a 3 day BBQ event to support area charities.  I will be co-chairing the Barbecue party on the first night to kick off the event.  It's being held on Memorial Day weekend.  The great news is that the spotlight charity for the bbq party is going to be FSMA - KC Area Chapter.   Charlie and I, along with several other SMA families, got interviewed by Channel 4, so we hope to get some publicity.  I'll keep you all posted about the event -- in case anyone wants to volunteer, attend or just help in any way :0)

Charlie and I went to the equipment provider yesterday to check out his new power chair.  They are still waiting for another part from the wheelchair company, but they wanted us to come in to get fitted.  We should have the chair at home next week.  We'll have to jimmy rig it to get Charlie enough hand/elbow support until we can figure out a tray for him, but it's so exciting.  Charlie got to drive it yesterday and again, just went "weeeeeee" the whole time.  It's going to be so much fun!

I better run.  Lily wants some time and Charlie is napping.  I'll post a few of their Valentine's photos on the photo page.  Hugs! 

February 12, 2005

Charlie is such a little bugger.  He's somehow learned to push his bipap mask up so that it's not over his nostrils, but sitting on the base of his nose.  So it's doing absolutely NOTHING when he does it.  I check every time I am up at night to make sure it's where it's suppose to be, but the last two nights, it's been on the bridge of his nose in the morning.  He cracks me up -- he's too smart for his own britches.  We'll try tightening the straps on his cap to hold it down lower. . .  Other than that, all is well here.  We are STILL anxiously awaiting the equipment.  We keep hearing the same things -- waiting for the parts from the vendor...  I can't wait to see my boy in POWER!  Hope all is well with everyone else.  Hugs!

February 9, 2005

Just a quick update.  I get so frustrated waiting on vendors.  We were suppose to get both our Tristander (the piece of equipment that allows Charlie to "stand") and the power base (which will allow him to drive himself), a few weeks ago.  But there always seems to be problems.  I'm so anxious for Charlie to have wheels.  It will be so much fun watching him zoom all over the place.  Just had to vent a little.   Other than that, things are great.  

February 6, 2005

I just realized I haven't updated anything in a long time.  That must mean that things are cruising right along :0)  Which they are.  Charlie is remaining healthy and well.  So we can't complain.  We had a fun week last week.  We went to another SMA friends house (Brett - he's 5 and a Type II) for a play date.  Brett was nice enough to offer Charlie his power chair for a trial around their house.  It was so fun to watch Charlie try to zoom in the chair.  He had so much fun and was ooohhhing over and over again.  It makes me so anxious for Charlie's new power chair.  I know he will be all over the place!  Hopefully, we are just a few weeks away...  You can check out cute photos of Charlie and Brett on the photo page.  Also, once I learn how to put videos on this site, I can share some  of Charlie zipping around in Brett's chair...

Lily is doing great too.  She tried to have a sleepover with a school friend last night.  We knew she wouldn't make it, but the two girls begged us unmercifully, so we relented.  Lily was home in our house by 9 p.m. that evening.  It was so funny, but I'm glad we tried it.

Well, I better get off to bed.  Hugs to everyone.  We are blessed with our good health and wonderful family and friends.

January 28, 2005

Life is good.  I'm sitting here writing this, listening to Daddy and Charlie play chase with Lily.  I can hear Charlie squealing and laughing.  It's little moments like this that bring true joy and remind us that Charlie can enjoy most games that little kids play -- we just have to improvise.  Daddy is sweating up a storm carrying Charlie while running all over the house, but oh, it's so worth it.

Lily had a rough day.  She threw up four times this morning.  I'm hoping that it wasn't a bug, but just too much of a cold draining into her stomach (sorry to be gross).  I kept Charlie away but hope that if it was a bug that Charlie doesn't catch it.   There is only so much we can do to keep Charlie safe from germs :0)  

It's now time to go put the kiddos to bed.  We are blessed by so much and it shows itself in every laughter and giggle that makes our hearts swell.  God bless.

January 28, 2005

I'm a little worried about Charlie's chest.  It's getting more and more out of shape.  He spends most of his nights on his right side because he prefers it.  We try to start him out on the left, but he fusses to change positions and lasts longer on his right.  Anyway, it's starting to get more and more flat on that side.  I know that BiPap is suppose to help with that, but not sure what else I should be doing.  I hate not knowing what more we should be doing.  He needs his sleep and we can't force him to sleep in positions that he's not as comfortable in, but....

Charlie is still staying healthy otherwise.  He's doing great on the AA diet since he's stopped nursing.  He's only eating orally about 1/3 to 1/4 of his calories, so it's nice to have the g-tube option and not feel like we have to force him to eat.  We go in at the end of next month for his 18 month check up..  I can't believe how big and grown up my little baby boy is getting.  It's hard to remember that he's not a baby anymore.  By now, he'd be all over the place and into everything and probably wearing his mommy out more than I can imagine if it wasn't for this dreadful, awful disease.  But I have to remind myself to remember the positives.  He is just so smart (again, I can say that since I'm his mommy).  He counts to 10 and his sitter Nadia says he counts to 5 in Spanish for her.  He sings a lot of the ABCs with Lily and me too.  I wish I could learn how to put videos out on this site because I have the cutest one of Charlie having a conversation with Simba.  Simba was a present from one of his therapists and Simba talks and pauses for responses and then talks more.  Charlie will have an entire conversation with this toy and it's the cutest thing ever!  Enough of me bragging, but I just felt the need to talk about good things.  

January 25, 2005

Ok -- we had such a weird night last night.  Charlie went to bed at his normal time, but seemed really fussy on bipap.  I knew it would be a long night because normally he goes right to sleep -- or he sings for awhile.  He's never cranky about it.  He fell asleep and woke up around 9.  So I went in to roll him over -- this was much earlier than normal, but thought if he wanted it, then so be it.  I bet I was up and down 7 times before 11.  He was so fussy and uncomfortable.  Then he really started fussing and his heart rate shot up so that his alarm went off.  I went in and tried to calm him down.  He was fine as long as I was beside his bed.  If I started to leave -- even if his eyes were shut -- he'd wake up and fuss.  After going back and forth for an hour, I finally took him off his pappy to see if that was bugging him..  It worked for a while and then he got fussy again (now, mind you, Charlie is NEVER fussy like this).  About midnight or so, I finally had to sit in the rocker with him.  I kept his pulse/ox on, but had to undo his feeding tube.  We stayed in the chair for 1/2 hour or so, and he was content and fell back to sleep.  So I put him back in bed, hooked up his feeding tube and went to bed.  All was well.  He slept until 5:30 without a peep.  When John went in to wake him up -- Charlie was all wet.   I'd forgotten to open his feeding port when I re-hooked him back up.  So, all his food went all over the bed and him and NOT in his tummy.  I wonder if he didn't have an upset tummy or something last night.  Either way, after we gave him food, he fell back to sleep in our bed and is still sleeping (it's 8:30).  I just wish I could figure out what was wrong.  He never gets that upset on his pappy.  I hated keeping him off all night, but it was the only thing that worked.  Hopefully, it was just his teeth or a slightly upset tummy.  Now, I need a nap :0)  John slept through it all (ha ha).  

January 18, 2005

So far Charlie has avoided any bad colds, but Lily came home with a doozie.  She's got a pretty deep cough and runny nose.  I am saying many prayers that Charlie doesn't catch anything from her.  It's so hard to keep her from playing with him and touching all his toys.  Hopefully, we've done enough hand washing and purelling to keep the bugs at bay.  Charlie has me concerned in that he's not wanting to eat as much.  I'm hoping that this isn't the start to his losing his swallow.  But only time will tell and we have to keep on trying.  I've just been increasing his tube feeds and am just letting him eat what he wants. John and I use to try to make him eat his two jars of baby food a meal and I'm just not going to force him.  I'll let him eat for pleasure and make sure he gets enough calories via the tube.  We'll see what happens.  I know that we've been so blessed already in that he hasn't been sick and he still has his swallow.  So, we will thank God for the good things He's given us and know that Charlie is in His hands.  We pray for all the sick SMA friends and family as well.

January 17, 2005

While we had a nice quiet weekend, we are anxiously awaiting Lily's and Daddy's arrival home.  They are driving back today from Minneapolis.  All we've heard is how much fun Lily had with Anna and Sarah.  I'm so glad that Lily and John were able to have special time together with his family.  Next time, when it's not 15 below zero in MN, Charlie and I will look forward to going to :0)  I know Charlie will be so excited to see his Daddy and Sister.  He misses Lily during the day - even when she's at school.  She is a good source of entertainment for him.  I love how Lily will play with him sometimes.  Safe journey Daddy and Lily.

January 14, 2005

Charlie and I have been having a good time.  Lily and John went up to Minnesota for the weekend to visit his parents, so it's just Charlie, Grandma and me hanging out.  We have been playing a lot and having fun.  During therapy this morning with Kristy, his PT, Charlie sat up with his new TLSO support and played for 10 minutes.  He looks so big and tall when his chest wall is supported.  I'll be sure to take some photos when John gets home with the camera.  Then, we spent 10 minutes in the stander.  It's so much fun seeing him up and happy.  But the thing that I love the most is that Charlie "counts" to 10.  You can't understand every word, but it's definite that he's trying to say each number.  He is so smart and adorable.  I can say that since I'm his mother (smiles).  We miss Lily and Daddy, but are enjoying some quiet time too.  

January 12, 2005

Well thankfully, we've had several uneventful days.  Hopefully, the elevated heart rate was just caused by something I inadvertently did.  Charlie is doing great.  My only bummer is that he's giving up on nursing.  (In case you didn't know I was still nursing him several times a day because he's been doing so well health-wise and everything I've heard is that SMA kiddos go down hill a little when they stop nursing - although some says that's because you start with milk and we aren't doing that...)  Anyway, since he's been doing so well, I didn't want to change anything.  If nursing a few times a day was helping, then by all means, I wanted to keep it up.  But now, Charlie is the one deciding to quit.  If I'm lucky, he'll do it once a day, but not always.  I've tried to pump thinking that I could add that to his feeding tube feedings, but I'm not having much luck there either.  So, needless to say, I'm going to worry that Charlie will take a turn for the worse.  I sure I'm just paranoid, but I figured as long as we keep doing what we are doing, then he would hang tough...So, I guess we'll just have to wait and see.  Hope all is well with everyone.

January 8 , 2005

We had another fun day.  Charlie loves his new cousin Maria almost as much as Lily does.  After an uneventful day, we put the kiddos to bed.  John, Kara and I were down stairs watching a movie when Charlie's heart monitor went off again.  John rushed up stairs and Charlie's pulse was racing in the 180s.  After I picked him up, rocked him and held him, his heart rate went down and he had a normal night.  We don't know now what caused the episode tonight as well as yesterday.  We just hope this isn't an indication that something is coming.  We thank God for giving us each healthy day with our children and feel blessed that He has given us so much healthy time with Charlie.  We hear a lot of stories from other SMA families and know that we could have it harder.  Hopefully, these two heart racing incidents are all there are going to be for a long time.

January 7 , 2005

Ok -- we had a scare today during Charlie's nap.  I normally give him prune juice and his Miralax (constipation medicine) into his g-tube via a syringe.  I give him 4 ounces, so I have to put two ounces in his syringe and let it drain, come back and put the rest in.  Then I typically wait 1/2 hour or more and add some water to try to increase his h20 intake.  Well, today, I was upstairs doing things, so I kept going back in and didn't wait the normal times.  I put more water in than normal since it drained so quickly and then went downstairs.  About 5 minutes later, Charlie's pulse/ox (this is the machine that measures his pulse and oxygen saturation levels) went off.  I ran upstairs and Charlie was shaky, upset and his pulse was racing at 174/76.  Anything over 170 causes the alarm to go off.  I think I immediately knew what I had done.  I think I "overstuffed" his belly causing him to be distressed.  I pulled out almost 4 ounces and threw it away.  I then picked him up and rocked him for 15 minutes at least until he was calmed down and his pulse was normal again.  It really freaked me out.  I'm not exactly sure what would happen if he's pulse stayed high.  But it was a scare.  Everything was fine for the rest of the day, so all is well.   I just wish I knew more and know that I will keep learning new things daily from this disease.  John came home about 30 hour later.  He was at the airport picking up his little sister Kara and her 5 month old daughter, Maria.  The rest of the day/evening was great.  Lily loved having a baby in the house to play with and Charlie kept saying something that resembled "bebe" -- he loves Maria too.  It's fun seeing him giggle and try to touch a little one.  I'll post photos soon.

January 3 , 2005

Someone just asked me about the clinical drug trials and where we are with that.  I figured I should update everyone.  We were in the process of looking into two different trials earlier this past Fall.  But then we decided to move forward on getting Charlie's g-tube and that took precedence over anything else.  Now,  he's been doing so well, that we haven't looked into the trials right now.  I know we'll keep our options open and keep looking into upcoming or continuing trials, but right now, we are just happy with the way Charlie is staying healthy.  We'll keep you posted when we start thinking about trials again.  

January 1 , 2005

I just couldn't let the first day of a new year go by without a posting!   Thank you to everyone who is keeping up on our family by using our website.  We love reading the posts in the guest book from  all of our family and friends.  We also love knowing that more people are learning about SMA -- it still amazes me how easily it can affect anyone.  That John and I carry this genetic defect is beyond my wild dreams.  You always imagine that you will have healthy, happy children.  But to now know that 1 and 40 adults carry this defect, it's still so incredible to me that I had not heard of SMA before we had Charlie.  Please help us spread the news.  The more people who know about this disease, the more help we can have in stopping it.  No child or parent should have to deal with genetic diseases like this -- or MD etc.  So, please feel free to share Charlie's story and website with any of your friends.    We wish you health and happiness in  the new year.  I can't believe it's 2005!  How  many checks will I write with 2004 before I finally remember.  God Bless.

Click here for 2004 Journal

Click here for 2006 Journal