1300 HOURS on the Vest

He hit the 1300 HOUR mark on his Vest a month or so ago. I had taken a pic of it, but it was one of the ones that got erased on my phone. Here is a pic from the other day at 1335 hours. 

Can you imagine your kid sitting still for that many hours from age 1-5 years old?? I give Lil' Chris a lot of credit for all he has to do on a daily basis. 

He's such a good kid 

and hardly ever complains!!

As for a CF Update, he is doing great!! Keep the prayers coming daily, they are working!! :) He has his next CF clinic visit on 10/24, so pray he continues to stay healthy and his next throat culture is normal!

Thanks,

M

1st Time with Strep Throat / Old Videos:)

Well, Lil' Chris got Strep Throat for the first time last week ;( It started Sunday night with a sore throat. Monday morning(9/17/12) at 7:15am, he walked into our room and started throwing up in our doorway...yeah...we thought it was pretty gross too! 

He threw up off and on the whole day and wouldn't eat, saying his throat hurt, his belly, and his head hurt. His fever got up to 100.2 and we gave him kids advil, which helped take down the fever. He would drink water though, which was good so he wouldn't get dehydrated. By the end of the day, he couldn't even sit up to put his pj's on. He was just wiped out! I felt so bad for him, we almost took him to the hospital. 

The next day, he threw up 2 more times, but then started eating a little bit, even though he was still complaining of a sore throat. On day 3, Wednesday, I took him to the pediatrician, b/c he still had a sore throat. The dr right away was like..."Oh yeah! He's got Strep Throat!" I never knew all these other symptom came with Strep...well, now I know for next time. 

He was put on Amoxicillin for 10 days, 2tsp twice a day(he is almost done it now). This is the first time he has been on this. He is usually on stronger stuff. He took one dose that day and when he woke up on Thursday...his throat was all better and he was back to his normal self!! Praise God!! He still had to stay home from school tho, b/c you have to be on the medicine for 24 hours with Strep before returning to school. So he missed 4 days of school that week. 

So that makes a total of 5 days he has missed since school started. Not bad, it could've been worse. I'm just glad he is all better!! His lil' cough seems to have gone away too! So maybe it was a blessing in disguise;-)

So far no one else has caught it in the house, but unfortunately Oma who babysits woke up this morning sick:( Please pray she gets better soon and it doesn't spread anymore!

Here are a couple of old videos that my husband found of the kids playing after Christmas. Lil' Chris was 2 and Ayla was almost 1. It's hard to believe they were that little!! Lil' Chris always loved his guitar!! Ayla shaking her head at the end cracks me up:) Enjoy...

Thanks for your continued prayers,
M

1st Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
M

Thirty-One CF Fundraiser Results

Hopefully this posts, I've tried like 20 times to post it and have had to re-type it 2 times! ARG!!! Sorry it took so long to post, but here are the results...

WE REACHED OUR GOAL FOR THE THIRTY-ONE Fundraiser for CF!!! WOOHOO!!! THANK YOU EVERYONE WHO ORDERED SOMETHING TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!!...

Danielle

Chantel

Jeanette & friend:)

Andrea S

Stacy W

Samantha C(fellow CF mom:)

Rachel M

Barb N

Stacie M

Amanda P

Samantha S

Margo F

Donna H

Steph W

Sue D

Rebecca G

Melissa C(fellow CF mom:) 

Carrie G

I can't begin to put into words what it means for all these girls to support Lil' Chris like this!!! It means soooooo much!! BIG THANK YOU to Carrie for donating her whole commission for A Cure 4 Lil' Chris and ALL CFers!!! You're the BEST Carrie!!! :)

Our goal was to have $1,000 worth of products ordered so that we could raise $250 plus the $500 from the Kohl's team for helping out at the fundraiser, which equals to $750 raised for a CURE for Cystic Fibrosis!!! WE DID IT!!! WOO HOO!!!!!!  

We have surpassed my personal goal of $5,000 now for our walk for CF!!! We are at $5,673.90!!! Woo Hoo!!!
We have even passed our team goal of $7,000 too!!! It doesn't show it on my Great Strides page yet, but we are still waiting on about $2,000 to come from Kohl's grants from my CF fundraisers! Kohl's alone has donated $4,000 so far this year!!!! AMAZING!! My goal was $5,000 like last year, so I better set up 2 more AiA events;-) We couldn't raise that much if it wasn't for my awesome Kohl's employees!! They are the BEST!!!! 

Here are some pics of the kids modeling our new Thirty-One bags. They LOVED their bags!! Ayla said "That's A for me!!!" LOL(I got her initial on one of the bags for her;)

Thank you again everyone!! I'll probably do another Thirty-One fundraiser for CF next year, or when people start asking me to do one b/c they want to order some stuff;-) I already know one friend who wants to order some more:)
M
 PS. If you missed NY Med about the 26 year old girl with CF, click this link to watch the episode(it shows other people too, but you might be able to fast forward through them if you don't want to watch them too)...http://nymedshow.com/episodes/episode-6

CF Clinic Visit / Thirty-One & Alice Noble Fundraiser Results

Had a GREAT CF clinic visit yesterday, and a GREAT Thirty-One Party for CF last night!! We have raised $700 so far and are still taking orders until Fri 7/27!! The pic above are just a couple of items available. BIG THANK YOU to Carrie Guenther my consultant, who did a wonderful job and is donating 25%(her commission) to a CURE for CF!! Another BIG THANK YOU to all my awesome girls for coming to my party and ordering something!!...

Stacie M

Margo

Amanda

Samantha S

Barb

Rachel M

Oma

Samantha C

Andrea S

HUGE THANK YOU to my Kohl's girls in red above for coming so that Kohl's will give a grant of $500 that will go towards a CURE for Cystic Fibrosis for Lil' Chris and ALL who suffer from CF!! To break it down, $500(Kohl's grant) + $200(25% commission on $800 ordered)=$700!! Click here if you would like to order too and help us get to $1,000 by Friday 7/27!!!! 

Every girls gotta have a Thirty-One bag;-) I'm super excited to get mine!!! You can even personalize it with a saying like "Cure CF" or your name or something for only $5!! Also, for every $31 you spend, you get one of 5 bags for only $5!! The bags you get for $5 are really nice too!! If you are interested, just let me know!

Thank you to Samantha for bringing Makayla so that Lil' Chris and Ayla had someone to play with:) Also, it was so nice talking with Samantha and sharing my tips and tricks of having an infant with CF. Her 4 month old daughter was recently diagnosed with CF. Please keep Aubrey and the whole family in prayer as they get used to this new way of life. Also, Aubrey has cultured Pseudomonas already and is on Tobi and Cipro which is hard for a little one to sit and do those treatments.

Special thanks to my neighbor Stacy W for ordering on-line even though she couldn't make the party! Thanks Stacy!!

Thank you to Jeanette and Steph W for spreading the word and getting orders!! You girls ROCK!!

So our goal is to hit $1,000 raised by Friday 7/27, so make your orders and spread the word!!

As for Lil' Chris' clinic visit...his weight was 45 lbs(73 percentile) up from 43.8 lbs, height was 45.5 inches(88th percentile) up from 45, and his BMI was 47% up from 40!! WOOHOO!!! I'm so glad he has started eating a little bit more. He will now eat a grilled cheese sandwich, turkey and cheese sandwiches, and nuggets!! Just the other day when I was giving him a bath, for the first time I noticed that his belly is actually starting to stick out a little bit!! WOOHOO!!! Gaining weight is so important to CFers. 

His PFT test went GREAT!! He blew a 99 FEV and a 93 FEV1!! She kept saying what a great job he was doing for his age! I love his face in the video's above after he got done:) He was so impressed with himself, I think:) I know I sure was proud of him!! Way to Go Lil' Chris!!

Overall, the CF doctor told us that we are doing a GREAT job as parents and to keep doing whatever we are doing b/c it's working! She also said that ....

"Lil' Chris is our poster child for CF"

WHAT???? WOW!!! I LOVE hearing that!! I pray he continues to do so well! He wouldn't be doing so well if it wasn't for all your prayers!! I can't thank you all enough for continually praying for Lil' Chris!! It means the world to us!! God CAN work miracles, and he is every day in Lil' Chris!!

I'd say pray for a clear throat culture result, but he didn't get one this time. I'm not too worried about it since he just got one 2 months ago and he hasn't had a cough since!! Praise the Lord!!

The kids behaved so well for the 2 hours that we were there!! When they weren't looking out the window at the baseball field with Daddy, they were playing with the iPad or reading books that we brought from the library:) Love my kids!!

We had another CF Fundraiser today at the Alice Noble Ice Arena! BIG THANK YOU to my awesome Kohl's associates for coming so that Kohl's will give another $500 grant to cure CF!!...

Marla

Steph W

Sarah D

Devin

That's $1200 in just 2 DAYS for a CURE for Cystic Fibrosis!! WOOHOO!! We did a CF craft at the Summer camp at Alice Noble today, which was learning about CF and then putting CF tattoos on. Above is a pic of the kids being goofy with their shirts and shorts. Some of them even put the tattoo on their forehead. LOL! Then there is a pic of Lil' Chris being silly with one of the toys:) LOL

Thanks, 

M

PS. I'll update you on our total from the Thirty-One party after Friday when it closes:)

Thirty-One Party for Cystic Fibrosis 7/25/12 at 7pm

Ok everyone, I'm having my first ever Thirty-One party to benefit the Cystic Fibrosis Foundation to help find a CURE for CF!! Who wants to help me raise some much needed money to find a CURE and also get some pretty cool hand bags for yourself?? ;-)


Everywhere I go, I always see someone carrying a Thirty-One bag! I've been told by many that "You're not cool, unless you have a Thirty-One bag!" So I've teamed up with my awesome neighbor, Carrie G, to host a party at my house this coming Wed 7/25 at 7pm(message me or email me for address if you want to come). I can't wait! This is the first party that I've ever hosted! I think I went a little overboard on buying stuff for the party;p I got all kinds of different chips, cookies, pretzels, and soda:-)  Well...I DO have a CFer in my house, so....Yes, everything is high calorie, sorry :p LOL


Feel free to pass this along to get more orders and to get more money for the CFF!! You can order no matter where you live!! You don't have to be here for the party to order something! Just click this link and make your order and 25% will automatically go towards CF!!  http://www.mythirtyone.com/shop/eventhome.aspx?eventId=E1971734&from=MYEVENTS


BIG THANK YOU to Jeanette for being the first to order and to get her friends to order too!! Thanks Jeanette, you're the BEST!!!


Another BIG THANK YOU to my 2 sisters and my neighbor Andrea for ordering as well!! We are almost at $250 already and we didn't even have the party yet!! That's AWESOME!!! 


Thanks everyone for helping support Cystic Fibrosis!! It really means a lot!!


Before the party this Wed, Lil' Chris has his 3 month check-up at the CF clinic. Please pray that his PFT's are up and that his culture is normal and that his lungs are clear! He has been doing really well and hasn't been coughing hardly at all!! Praise the Lord!! I think the Pulmozyme is doing it's thing;-)


Thanks,
M

Pulmozmye Update, 4th of July Pics/Video's, and Swing Flip

Lil' Chris is doing GREAT with this new nebulizer routine!!  He doesn't mind it at all, and on day 2, he actually asked to do more afterwards;-) I told him it's only one time a day and he got a lil' sad. What a kid! He takes any new thing the dr.'s throw at him SO well!! He AMAZES ME!!

I, on the other hand, am still getting used to it. I'm surprised I haven't forgotten yet since we have been so set in our ways doing the Vest in the morning. It really helps having the nebulizer machine right next to the Vest machine, b/c I've caught myself about to put his Vest on and then I see the nebulizer and I go and get the Pulmozyme out of the fridge real quick;-)

So, I'm still learning a lot thru this whole new process and luckily I have a GREAT CF community to help me out with all my silly lil' questions. CysticLife.org is so great to have around in times like these...

1. We are supposed to wash it afterwards with a clean paper towel and soap and warm water, THEN sterilize them after each use. Oops, didn't do that the first time, we just rinsed them.
2. You can't pour the Pulmozyme in the cup and then let it sit on the counter...it leaks :b Learned that the hard way!
3. Boiling water is HOT!!! I about burned my fingers trying to fish them out of the water after it was in the microwave for 6 minutes and I even let it sit for a couple of min before I tried to get them out!! OUCH!!
4. Lastly, it's hard to tell when the medicine is done. I try to shake it towards the end and then more comes out, but still it's hard to tell and I hate to waste any esp since it's outrageously expensive! Thank the Lord for BCMH!! Please pray we never lose BCMH!

I hope you all had a Happy and Safe 4th of July!! We had a great time at the pool and BBQ at Oma and Opa's house with John, Andrea, and Kennadie!! Afterwards, we went to the soccer fields where we have our CF walk every year, and they had some special things going on, and one was the kids got to sit in some army vehicles and got to turn them on, honk the horn, and step on the gas!! They LOVED it!! They kept asking where their buddy Spencer was and if he drives these :-) I think they are going to have lots of questions for Spencer when he returns home from the army in a month or so;)

Here is a pic of the kids about to watch the Children's Hospital Helicopter, "Air Bear", take off. They liked exploring inside of it, while I secretly prayed they would never have to use it!!

Here is a video of the kids watching the helicopter fly off. It takes a while, but at the end they pray with me that they never have to go in one of these. Too cute...and sad knowing that it's a possibility for Lil' Chris someday:(

After that was fireworks time!! They covered their ears until half way thru, but then they put their hands down and realized it wasn't so bad after all;-)

Well, Lil' Chris continues to do GREAT!!! He is having no side effects from the Pulmozyme and I think he is coughing less too now that I think about it:) YEA!! Right now, he is having fun playing outside on his swing set:) 

On Tuesday, we went looking for a nice new swing set since he loves playing on his tiny old hand me down one, but my goodness they are expensive!! The one we want is white plastic over wood, so then we don't have to worry about splinters, or any mold or rotting or having to stain it each year, but it's like $4,000!!! YIKES!!! Of course it had to have a lil' playhouse which Ayla LOVED, b/c it had windows and a door:) She kept going in it and wanted us to knock to come into "her house"...too cute!! Oh well, maybe some day. On second thought...we might need one sooner rather than later, b/c he just almost flipped the whole swing set by swinging too high, and he just taught himself how to do flips, which is ok, but I'm afraid he might hit his head, and he loves hanging from the top...I guess there's not much else to do with it. LOL I think he needs a twirly tube slide, a rock wall, a rope wall, a horse swing thing, and a much taller, faster slide! He would be in Heaven!...and so would Mommy knowing it's much safer :) lol

Here is a video of Lil' Chris trying to make the best of his swing set(which we are very grateful for, otherwise they would have had nothing all these years, he's just outgrown it now;) and of course him doing a flip!! He was so excited the first time he did it!! I just can't believe he taught himself and he didn't hit his head! Still scares me!

Thanks for checking in with us and please keep your prayers coming!!

M

PS. Remember baby Chaia?? Well she just turned 1 the other day!! Amazing what prayer can do! Thank you all for praying for her, she still needs it as she has a long road ahead of her. Also, please pray for some fellow CF friends...Phennyman and Tricia. Phoenix had surgery the other day and is still in the hospital, and Tricia is going thru so much right now, she has an infection in her sinuses and she continues to loose weight and her breathing difficulties are increasing. Her husband, Nate, keeps a blog about her(which is what got me to start this blog so many years ago;)...www.cfhusband.blogspot.com. Please keep their families in prayer too. Thanks.

1st Nebulizer...Pulmozyme Video

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The above video is of Lil' Chris doing his very first nebulizer treatment!! Not bad for being a 5 year old CFer!! Most CFers start within their first year it seems like! He still doesn't even seem like he needs it, but from what I've gathered, it will only help him in the long run.

His first inhaled med is called Pulmozyme. It's purpose is to thin the mucus. People with Cystic Fibrosis produce very thick, sticky mucus that clogs the lungs and other organs making it harder to breathe. Pulmozyme helps thin the mucus, then the Vest helps clear the mucus out. After his Pulmozyme this morning, we did his vest about 20 minutes after, and I tried to get him to cough after the Vest, but it didn't seem to do much. I guess I was expecting a wet sounding cough that would produce mucus, but it was just dry. Not sure if this is a good sign or not.

I have always been a little scared of nubulizers with Lil' Chris, b/c I know it's very important to keep them sterile. If we don't sterilize them properly, then bad bacterias could build up on it and that would NOT be good for Lil' Chris. We were told to do it right after each use, b/c otherwise the medicine will build up on it and it will be hard to scrub it off. We rinsed it with hot water, then put all the pieces in a bowl and microwaved them for 5 minutes right after his treatment. Then when done, we shook the excess water off and let them air dry on a paper towel. We can not rinse them off with tap water, b/c that would defeat the whole purpose. I've been told that we could use a baby bottle cleaner, so I may have to pick one of those up;-)

This is all a new experience for us, so any insight would be much appreciated!! :)

Lil' Chris is doing GREAT!! He doesn't cough that much, but when he does, it is dry so that is VERY good!! A couple of weeks ago, he was waking up in the morning with lots of build up in his nose, but once he would blow a few times, he was fine. He complained of a sore throat a couple of days, and it got me worried he was getting a cold, but I guess it was just allergies. Thank the Lord!!

Right now, he is living it up having a blast on his Summer vacation, esp the last 4 weeks with his cousins!! Adding the Pulmozyme now will help him get into a routine for when Kindergarten starts this Fall. We decided to start the Pulmozyme this week, b/c I have off work this week and thought it would be good for me to be there with him for the first week so he can get used to it.

On another note...after my vacation this week, I will be going back to work on Mon 7/9 as an Assistant Store Manager of the Wooster Kohl's!!! WOO HOO!! I've finally been promoted AND within the same store!! I can't wait to get started, but this relaxing week with my loves will be so nice:) Thank you so much to all who were praying for this promotion and for me to get to stay at the same location. It really means a lot to me to get to stay so close to Lil' Chris and my family. Family time is so precious to me...to any family with a family member with a terminal illness. I'm just so glad I have the BEST DM EVER to promote me within the same store!! That almost never happens! THANK YOU JASON!!! THANK YOU LORD FOR ANSWERING MY PRAYERS!!

Have a GREAT week, I know me and the kids will...and Daddy when he has off work;-) lol
M