Conner's Final Day

Click here to read about what it's like to lose your 7 year old child to a HORRIBLE disease...Cystic Fibrosis...those 2 words make me sick right now!!!

Grab a tissue before you start reading Conner's mom's beautiful words.

Please continue to pray for Conner's family.

Thanks,

M

Breathe Easy Connerman!!! We'll Miss You!!

Such sad news to wake up to today.....Conner Jones, a 7 year old boy with Cystic Fibrosis who captured the hearts of the CF community passed away last night. Breathe easy Conner. We will continue to fight this horrible disease for you and all CFers!

Thank you everyone for praying for him and his family after yesterday's post. They really needed those prayers and still do. Please continue to pray for them all as they go through this horrible time.

http://notsobrightandshiny.blogspot.com/

Praying for the Conner family,

M

PS. It's not too late to donate to help find a CURE for Cystic Fibrosis...click here to donate now to help save the lives of 30,000 children and young adults.

Pray for Conner and Josh!!! / USA Today Article about CF

I know I said I would post Lil' Chris' birthday pics soon, but I have more pressing things to talk about today, or should I say ask of you today....

Lil' Chris' CF buddy, Conner, is not doing well. He is only 7 years old and is withering away thanks to this awful disease known as Cystic Fibrosis. I know what some of you may be thinking..."But I thought the life expectancy was 37?? He is so young!" Yes, the AVERAGE life expectancy IS 37, but that doesn't mean that EVERY CFer will make it to 37 or close to 37. If fact, click here to read an article in the USA Today. It hit me hard when it said..."Only a few decades ago, children with CF seldom survived elementary school. Today, thanks to earlier diagnosis and improved treatments, 47% reach 18 or older. Most of the 400 deaths a year are among teenagers and young adults, according to the CF Foundation's registry."

I guess I should be happy that it has come so far, but I'm not. I want it to be longer! I want the percentage to be higher! I want my son and all CFers to live a LONG full life! I mean 47% reach 18 or older???? 18??? That's it??? I guess I have fallen into that trap of wanting to believe that my son and all CFers will live to AT LEAST 37, but it's just not so in most cases. It's hard to except that fact. What can I do to make a difference???....fundraise, fundraise, fundraise to help find a CURE!! I have done a fundraiser every month so far this year except this month. I took a month off. Now I feel guilty...am I letting my son down?? Am I letting all the other CFers down??? I know I don't raise that much money with my fundraisers compared to some, but I also know that every penny counts!! I'll be picking up fundraising again next month. Thank God for my awesome fellow Kohl's associates who help out so we can get that extra $500 each time!! Thank You to all of you!!

Since I have started blogging, I have watched, seen, read of 3 CF mom's go through the worst thing a mother should ever have to go through....watching their CF child suffer to death and not be able to do a darn thing about it. It breaks my heart. I can't imagine ever having to go through this...I pray that I never have to. I pray and think often of Haley's mom, Ethan's mom, and now Conner's mom.

So I ask of all my readers...please click here to visit Conner's mom's blog and send her some encouraging words and lots of prayer for the whole family. Also, please pray for Josh. He has had a recent decline in his health too, but is getting stronger and is bouncing back. Click here to visit his blog and to see his very touching video that gave me goosebumps watching it....it's called "The Honest Truth." Thank you Josh for speaking the honest truth and sharing your journey with us!!

Thank you everyone for all your prayers. WE WILL CONTINUE TO FIGHT FOR A CURE FOR CF!!

Praying for Conner and Josh,
M

HAPPY FATHER'S DAY!! / Rough Night;(

HAPPY FATHER'S DAY, DADDY!!!

WE LOVE YOU!!!

Love,

Lil' Chris & Ayla:)

I hope all the great Father's out there have a wonderful day today!!

HAPPY FATHER'S DAY TO MY DAD, MY FATHER-IN-LAW,

AND TO MY HUBBY!!

You guys are the BEST DAD'S IN THE WHOLE WIDE WORLD!!

WE LOVE YOU!!

Love,

M, Lil' Chris, & Ayla

Unfortunately my hubby's father's day didn't start off on the right foot today;( Lil' Chris woke us up at about 3am and was throwing up on and off until about 6am;-( Poor kid;( I feel so bad, b/c I think it was my fault;( He had a scandishake at dinner and then before he went to bed, he asked for another one. At first I was hesitant, but then I gave it to him anyways thinking the more calories the better, right?! Well, I should have gone with my gut and not given it to him, b/c that's A LOT of calories in a short amount of time. Poor kid, I felt so bad for him and for my hubby since it was father's day and he was up early and cleaning up throw up. Sorry honey;( At least I have a cool present for you later;) I love you guys!!

M

3rd Annual CF Clinic Visit 6/16/10 and 1st Boo Boo;(

Sorry for not updating sooner about his clinic visit, but this is what I have been dealing with...


His first real boo boo;-( He fell in our driveway while running and scraped his elbow and knee;( Ever since then, he hasn't wanted me to leave his side...poor kid. So that's why I haven't been able to finish my montage and post, sorry and sorry the video is kinda long too...I didn't have time to edit it too much;)

CF Clinic appointment the other day went great!! His weight wasn't the greatest, but everything else went great!! His weight was 33.2, only went up 2 ounces in the last 3 months. His height was 38 1/2!! WOW!! Last time I have that it was 37 3/4, but they said that he grew 2cm...maybe I got it wrong last time...IDK. His BMI went down from 55% to only 15%;( They said it was b/c he grew taller, but didn't gain a lot of weight. They tried telling him that he needs to eat more and try new things, so we are working on that. I keep telling him..."The doctor's said you need to try different foods..." So far, he ate 3/4 of one chicken nugget 2 days in a row, and the other day he ate some of my taco pizza from Taco Bell!! That was BIG for him, b/c right now, his diet consists of: Cereal with whole milk, pop tarts, cheese(loves the Mickey Mouse cheese;), yogurts(loves the Danimals;), chocolate scandishakes(600 calories), water or apple juice, hot dogs, sometimes some lunch meat and cheese, chips(all kinds;), cheese curls, fruit snacks, bananas, apples, cheese whiz and crackers(I make letters on the crackers with the cheese;). That's about it though!! He won't eat any pasta, bread, meat, or veggies. Hopefully he grows out of this stage REAL soon!!

Lil' Chris did such a GREAT JOB all day long!! He wore his mask from the car to our room and back...that's including every time we were in any hallways and when we were in the lab and getting chest x-rays. Such a BIG boy!! We were there for FIVE LONG HOURS, but he didn't cry at all!! He didn't cry when he got his throat culture or even when he got his blood work done!! He wanted to sit for the first time and he even opened his mouth when she asked him to! I couldn't believe it!! He didn't even flinch with the blood work!! That's my boy;-) lol I didn't go with him to get his chest x-rays, but my hubby said that he did good, but fussed a little bit about laying down.

We met his new CF doctor now that Dr. K moved away. Dr. T is super nice! Lil' Chris seemed to really like her too:) YEA!!!

Afterwards, we went to CiCi's Pizza to eat and then went home and had some fun with one of his birthday presents;) It was a pretty cool Wigglin Water Sprinkler;) It had lots of lil' wiggling sprayers that went everywhere! He had a BLAST!! I loved hearing his lil' laugh and seeing his big smile:) It was so much fun!!

Here is a glimpse into what he goes through every year....(be prepared to be AMAZED as to how well he sits still for everything at only 3 years old;)....

Make video montages at www.OneTrueMedia.com

Clinic Tomorrow / 1st Time Sneaking Downstairs

I caught you, lil' stinker!!!!!



Not looking forward to our long day at the hospital tomorrow....gotta love those annual CF clinic appts!! We told Lil' Chris we were going to the doctors tomorrow and he said "I get to wear my mask???" lol

Uh oh...it's 10:30pm and I hear lil' footsteps coming down the stairs!! This is the first time he has done this since we switched his crib to a big boy bed:) If only he could understand how early we have to get up in the morning for clinic!

Pray for a good day and for all test to come back normal!!
Thanks,
M

Lil' Chris' 4th Haircut / CF Update

Lil' Chris got his 4th haircut tonight!! He did a GREAT JOB sitting all by himself and not moving and turning his head too much!! He is turning into such a BIG boy!! I can't believe it!! Here are some pics and videos....

Make video montages at www.OneTrueMedia.com

As for a CF Update, he has his annual CF clinic appt this Wed. Please pray all goes well and his throat culture results come back normal. (This should be an interesting LONG visit now that we have TWO kiddos that won't want to sit still!! ;) He has been doing very well, only a cough here and there that the antibiotics have been kicking out. Overall, he has had a GREAT YEAR!!! PRAISE GOD!!

Thank you all for your continued prayers for Lil' Chris and all his lil' CF buddies:) Please continue to keep Conner in your prayers, as he is only 7 years old and not doing well. Here is his site if you would like to read his story and leave an encouraging comment...www.caringbridge.org/visit/connerreedjones.
Thanks again,
M
PS. I didn't forget about his birthday pics;) Right now the video is 20 minutes long, so I have a lot of editing to do. I'm sure no one wants to see a 20 minute long video...except maybe my awesome Gram;-) LOVE YOU GRAM!!

Ayla...My Lil' Monkey;)

You'll never guess what Ayla did the other day...the little monkey:)

The other morning, I woke up early, so I came down to catch up on some Y&R. As I was watching TV, I heard a noise. It sounded like drawers opening and closing. I knew my husband wouldn't be awake yet, so I went upstairs and stormed into Lil' Chris' room thinking that he got out of bed and was going through his drawers....or worse...trying to CLIMB his dresser again! To my surprise, he was fast asleep!! I thought...Hmmmm, either he heard me and was quick and got into bed and was pretending to sleep, or....well, I could think of anything else that it would be???? lol

So, I went back downstairs and starting watching my shows again, and then I heard the noise AGAIN! I thought...I'm gonna sneak up there and catch him this time;) As I got to the top of the steps, I was just about to go into his room when I had a thought...maybe it wasn't him...maybe it was Ayla???? I peeked into her room and this is what I found....(the lil' stinker;)....

Make photo slide shows at www.OneTrueMedia.com

Her brother used to be in that same room with his furniture set up the same way and he did the same exact thing!! Too funny:)

Anyway, I told my husband that he needed to lower her crib since she was reaching over pretty far, plus she could get her fingers caught in the drawer. Well.....the short of the story is...it never got done and she ended up flipping out of the crib. Poor kid. She didn't get hurt, thank God! But guess what?? The bed got lowered after that;) LOL
M
PS. Lil' Chris' birthday pics coming soon:) Also, thank you everyone for your continued support for Lil' Chris!! We recently reached 20,000 hits on this blog:) YEA:) Not bad for a little over 2 years;)

Happy 3rd Birthday Lil' Chris!!!

Well, my lil' man had a birthday this past Sunday and he is now 3 years old!! I can't believe how time just flew by!! I am still uploading pics from his birthday and from our visit with Oma and Opa, so they may have to be my next post;)

For now, I'll leave you with a couple of pics of Lil' Chris' first nap in his new toddler bed:) We switched his crib into a toddler bed on his birthday. He has been doing REALLY well with it and we haven't had any problems yet!! His first time being in it, he only got up once to grab a toy and then fell asleep within 5 min!! He did the same at night time and then he did a GREAT job with the babysitter today!! I'm so proud of the lil' man he is becoming:) He is such a good lil' boy!!

HAPPY 3rd BIRTHDAY, LIL' CHRIS!!

WE LOVE YOU!!

Love,

Mommy, Daddy, & Ayla