CF Clinic Visit 10/24/12

Lil Chris had a great CF clinic visit today! Gained about 1 lb, and 1 inch, and his PFT was 97% even though he has a cough right now! Dr prescribed antibiotic Omnicef and Flonase. Thanks for all the prayers and keep them coming as we await his throat culture results. Also, please pray for adult CFer, Tricia, as she is waiting for a 2nd double lung transplant and is having a very difficult time breathing. Her PFT right now is only 15%:( Lord give her strength!

The above was my facebook quick update, now for a more detailed one;)...
Weight was 46 lbs up from 45 lbs 3 months ago, height was 46 1/4 inches up from 45.5, and BMI was 30th percentile down from 47th percentile(dr's like it to be at least at 50). He didn't grow or gain very much, which is why his BMI went down I guess.

He did great when he got his throat culture!! He even coughed in the middle of it which was good, b/c she was able to get some mucous on the swab thing. I couldn't believe how much was on it! Please pray for no bad bacterias. I'll let you know what his throat culture result was when we get it.

He got his flu shot today and was not very happy about that long needle going in his arm. Pretty much cried and wouldn't move his arm til we went to the park to play. lol Good thing they did it at the end of the visit!

He started a cough last Wednesday, so it had been a whole week and it wasn't going away, and the dr said that his nose was pretty gunked up. I asked if she thought it was allergies or a cold and she said a cold. I pretty much figured that since the rest of the house got sick too. So she put him on an antibiotic called Omnicef. He was on this Sept of 2011. I looked back on his cough chart that I keep on the right side of this blog and was surprised that his last cough was in March! Maybe the Pulmozyme is working!! She also prescribed Flonase nasal spray to help clear up his nose. This is the first time he has ever had this. He has to do 2 sprays in each nostril 2 times a day. He did very well tonight when we gave it to him! I was surprised! Oh, and this is the first time he has had capsules for his Omnicef, usually we get the liquid antibiotics. They are huge, but he swallowed it right down like a champ:)


He did great on his PFT too!! His FVC was 97% and his FEV1 was 92% which was down a little from last time. I thought they were going to be way worse b/c of his cough but they weren't! YEA!!


Right after clinic, I did a CF AiA event today which Kohl's gave a grant of $500 for a Cure for CF!! Woot woot!! Love Kohl's and my awesome associates!!
  Thanks again for your continued prayers, M

CF Update / Prayers Needed!!

Thought I'd give a quick CF Update. Lil' Chris is doing GREAT!!! No coughs right now, which is FANTASTIC!!! But, this morning at breakfast, he was complaining of his throat hurting and his forehead hurting. It hasn't slowed him down though, but he wouldn't eat his toast and lots of butter:( I'm hoping and praying it doesn't turn into anything.

He has regular CF clinic check-ups every 3 months, and his next one is scheduled for 10/24. Please pray his lungs are clear, his throat culture is normal, and he does great on his PFT test.

As for the Pulmozyme, he is still doing a GREAT JOB with it!! We do this nebulizer every morning at the start of his Vest. It only takes about 5 minutes, since we have a very powerful machine:) The sterilizing isn't as bad as I thought it was going to be. We wash each piece with soap and water and then put them in a bowl of hot water and put it in the microwave for 6 minutes. Then we take them out and place them on a paper towel to air dry and we put a paper towel over it too.  The only thing is....we sometimes forget it in the microwave and it sits there for awhile, then we have to re-do it. LOL

Remember when I posted about a little girl named Chaia who had heart problems and a rare genetic disease? Well, can you believe it has been 1 year and she is doing Great?! She still has a long road ahead of her, but she is def a fighter! Please keep her in your prayers as well. 

Phennyman could still use your prayers as well. Poor lil' guy has been going in and out of the hospital too much! :(

Tricia, Nate's wife who has CF, has been having a very hard time breathing lately. She is about to get on the list for a 2nd double lung transplant soon, I believe. Please keep her and her family in prayer. Lil' Gwyneth is doing Great, but I'm sure it isn't easy seeing her mommy suffer.

Thanks for all your prayers!
M
PS. I FINALLY got my new iPhone 5, but I haven't figured out how to post pics on here yet from it. As soon as I do though, I'll post the pics and video's from Lil' Chris' first basketball practice. Guess who his coach is?? :)

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.

Make a video - it's fun, easy and free!
www.onetruemedia.com

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