Kiddos Update:)

Lil' Chris is still doing GREAT with his TOBI and Cipro!! So proud of him!! He is still coughing a lil', but not like a cold cough, so that's good:) We have switched to doing his Pulmozyme at night now instead of the morning and it seems to be working out okay so far!!

We took Ayla to the doctors yesterday for her cough and stuffy nose that she has had for like 2 weeks(her cough went away for a few days, but then it came back), and she got her first throat culture taken and she didn't even cry!!! GO AYLA!! She didn't cry when she got her flu shot the other day either!! Lil' Chris cried like a baby when he got his and he's 5 and Ayla is only 3!! ;-) LOL I think she was determined to beat her big brother. She said after he got his shot that she wasn't going to cry when she got hers...and she didn't!! She came close, but the tears did not come out! I felt bad for her, b/c you could tell it hurt her and she really wanted to cry:( She's one determined lady though! Just like her momma;)

So today, I got a voicemail from her dr saying that she did not culture Pseudomonas like Lil' Chris, but she DID culture Strep Throat! ARGGGG!! So now she is taking Azithromycin 5ml once a day for 10 days. We were kinda shocked she cultured this, b/c she's been acting fine and has not complained of a sore throat and has just had a cough, except one day she had a lil' fever for a few hours.

Please pray she gets better soon and that it doesn't spread to the rest of us, esp Lil' Chris...he's got enough going on right now.

The kids are soooo excited that their cousins are coming next week for Thanksgiving!!! Only thing is...Lil' Chris has cultured Pseudomonas, Ayla has cultured Strep, and their cousin Nathan has Leukemia. I'm a little worried that they may get Nathan sick, which could turn out very bad for him. So, I sent a message to the CF clinic to see what they think, maybe the meds will work by then??? IDK, we'll see what they say.

Totally bummed that the CiCi's Pizza here in town closed a couple weeks ago:( That's where I did most of my CF fundraisers. Luckily the Alice Noble Ice Arena lets me do CF Education Days there during their after school program. I'm still able to make that an AiA event with Kohl's to get the $500 grant, so that's good!! When one door closes, another one opens:) I thank God that they allow us to do events there, b/c otherwise I wouldn't be able to raise $5,000 from Kohl's each year...btw, just one more event for this year and Kohl's will have donated $5,000 to CF this year alone!!! THANK YOU AWESOME KOHL'S ASSOCIATES!! Last year they did $5,000 too!! I can't remember exactly how much the years before that...a few thousand, I think:) Gotta love Kohl's!!! Speaking of which...I have a Friend's and Family coupon for 20% off starting this Thursday!! If you want me to email it to you, just send me a message or an email:)

Thanks so much 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?? :)

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

Learning About CF & New Drugs for DDF508 & 2 new local CF families

I got some great news and some not so great news...

The great news is that a Phase 2 clinical trial of Kalydeco in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation(Delta F508), which Lil' Chris is a double Delta F508!! This is it people!!! This could be our answers to pray!!


If you remember me talking about Kalydeco only working for those with mutations G551D which is only 4% of the population, well VX-809 is what helps the DF508's, so with the combination of them both...the possibilities are hopeful!!! :-)

Here is a video that a fellow CF mom put together to help us all understand what these 2 drugs really do...(note, VX-770 is what Kalydeco used to be called)...



Below is what the CF Foundation posted yesterday about this trial...(click here to learn more)


June 28, 2012
A Phase 2 clinical trial of Kalydeco™ in combination with VX-809 showed significant improvements in lung function in people with the most common CF mutation, according to final results announced today by Vertex Pharmaceuticals Inc.
Both Kalydeco and VX-809, a CF drug in development, are designed to treat the root cause of cystic fibrosis. Vertex developed Kalydeco and VX-809 with significant financial, clinical and scientific support from the Cystic Fibrosis Foundation.
The 56-day study enrolled 109 people, ages 18 and older, with one or two copies of Delta F508. People in the study with two copies of Delta F508 (the most common CF mutation) who received the highest dose of VX-809 combined with Kalydeco showed the greatest improvement in lung function. Vertex released preliminary results from the Phase 2 trial earlier this year.
Based on these final results, Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of Delta F508 in early 2013. Pivotal trials typically aim to gather data that the U.S. Food and Drug Administration (FDA) could use to decide whether to approve a potential drug.
“The improvements seen in lung function are very encouraging, and we are pleased that Vertex plans to move forward quickly with a pivotal trial,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “We still have significant work ahead of us, but the entire CF community can take pride in its role in making this important step possible. We thank the trial volunteers and their families, clinicians and scientists, and our dedicated volunteers and donors across the country.”  
Participants with one copy of the Delta F508 mutation also showed improvements in lung function, compared with those who received a placebo — though smaller than the improvements seen in those with two copies of Delta F508. Vertex said it plans to conduct additional studies of Kalydeco and VX-809 in those with one copy of Delta F508.
About 50 percent of people with CF in the United States have two copies of the Delta F508 mutation; an additional 40 percent of people in the United States have one copy.
The FDA approved Kalydeco in January 2012 for people with the G551D mutation of CF ages 6 and older. About 4 percent of people in the United States have the G551D mutation.
People with CF and their families who have questions about the Phase 2 results can contact Vertex Medical Information at 1-877-634-8789.

Isn't that GREAT news!?!


Now for the not so great news... I recently found out that there are 2 more kids that have gotten diagnosed with CF in our area:'(

One is a cute lil' 9 year old boy. I first found out about him through The Faithful Little Cupcake facebook page. They posted a pic of him doing his Vest while eating one of their yummy cupcakes. So of course I asked if he had CF once I saw the Vest, and of course asked...does he live in Wooster? Then just a coincidence that my friend Stacy A. with Broncheictasis (a lung disease similar to CF) was at a pool party and found out that there was a child there with CF. She of course then talked to his mom and let her know that she could not be near him since she has cultured Pseudomonas. She told his mom about me and surprisingly she already knew about me! She called me "The Famous Michelle who does the CF walk" or something like that :) LOL!! So she requested to be my friend on Facebook and I'm so glad so I can help her out :) Come to find out, she is the same mom from the Faithful Little Cupcake page! Small world:)


The other one is a little girl who was born a couple of months ago. Her sister was in Lil' Chris' preschool. When she was born, they thought there was a mix up with the results b/c the parents aren't CF carriers. The sweat test came back positive though and they are starting treatment today. The parents are going to get re-tested. A girl I used to work with and used to babysit for us, Michelle V., was the one who told me she has CF and recommended I be her friend on facebook. I had no clue who it was until I went to her page on facebook. Since school let out, I've been wondering if she ever got the sweat test done and what the results were. I'm glad Michelle put us together so I can help them out the best that I can.We started Lil' Chris' treatments at just 2 weeks old, so I know what it's like to try to feed an infant with CF and do manual CPT.


I wish these families all the best and I promise I will not let up on finding a CURE!!! I do all this fundraising not just for Lil' Chris, but for ALL current CF families and ALL future CF families!!! WE WILL MAKE CF STAND FOR CURE FOUND!!!


BTW, all my local CF moms who are probably panicking right now...the little boy above is home schooled :) For those who don't know, schooling is so hard for CFers. It was a big decision for us with Lil' Chris. CFers can't be near each other, b/c of cross-contamination, they could spread the bacteria's in their lungs to each other. A nonCFer can't catch it, but to someone who has another lung disease it can be very dangerous. For example, you don't want an older CFer around a younger CFer in fear that the younger one would catch the bad bacterias that the older one has accumulated over the years. 

For Lil' Chris, we had to make a big decision b/c the local public schools had CFers at each one and the one school that didn't...well, it's very old and full of mold which is not good either for a child with a lung disease. So we decided to send him to the local Christian School. Honestly, I'm glad, b/c I've always wanted my kids to go to a Christian school, b/c I loved going to a Christian school as a kid and I don't think I would be the same Christian I am today if I didn't. There are no CFers at this school, but the sister of this newly diagnosed baby girl will be going there. She will be in the all day Kindergarten and Lil' Chris will be in the half day Kindergarten, so next year they will probably be in the same class. We thought we would start him out slow, plus it means one more year of possible less germs to catch, oh and we totally fell in love with this teacher! She knows some friends with CF, so she is aware of how being germs cautious if very important. Anyway, even though they will be in different classes this year, we will still have to be careful that our 2 CFers don't get too close. They say 3 feet is ok, but I've just tried to always keep him far away from any CFer to be safe. So we'll just have to be extra cautious if we go to field trips together or something.


We got back his last throat culture results and it was the same as usual...Staphylococcus areus sensitive to Oxycillen(MSSA). No changes in treatment. YEA for no bad bacterias!!! WOOHOO!! 

Here is a pic of Lil' Chris doing his Vest and holding a pic of his buddy, Spencer, who is serving in the Army right now and was in the Daily Record Newspaper the other day:) GO SPENCER!!

Please continue to pray for good culture results and good lung function and please keep the above new CF families in prayer. They are going to need the strength! Also, don't forget about Phennyman, he is in need of surgery. Lil' Chris' cousin Nathan with Leukemia is visiting from NJ right now and he is doing GREAT!! Praise the Lord!! Thanks so much for all your prayers!
M

1st Colds in 7 months;(

Well, Lil' Chris ended up catching Ayla's cold too;-( I guess I can't complain too much since this is their first cold in 7 months:) But... you can guarantee that we won't be going on anymore vacations without our Vitamin D:) Vitamin D really does help build up their immune system along with the AWESOME air purifier that we have!!

Lil' Chris usually develops a cough after his colds, so please pray that he doesn't this time since Nathan will be visiting us next week for Easter. He has been coughing a little bit this morning though already;( Hopefully some extra Vest time will help. Chris and I haven't caught their colds yet, so please pray that we don't. Even though Nathan's counts are all good, I would still hate it if he were to catch anything from our household:(

The pics above are the 2 sweet rides from Grammy R! Thanks Grammy!! They LOVE them!! This should be a FUN Summer:)

Have a GREAT Weekend!!

M

PS. Don't forget to join us this Wed 4/20 from 5-8p at CiCi's Pizza in Wooster for my CF fundraiser:) Enjoy a Great meal for a GREAT cause!!

Vitamin D Experiment / Mini Vaca

Well, my test about Vitamin D was right!! None of us has had a cold since 9/6/10 and then we went on a mini vacation this past weekend and I didn't give them their Vitamin D....and Ayla ended up catching a cold;-( Please pray that it doesn't spread to all of us, especially Lil' Chris! Note to self....Don't leave home without your Vitamin D!!!! :) Maybe it was a coincidence, but maybe not:) I'm not going to take the chance next time, it's too risky for Lil' Chris. He was complaining of a sore throat off and on today, but no runny nose yet. To all my CF buddies and fellow CF parents out there (and everyone else;).....try taking some extra Viatamin D and see if it works for you! An adult should get about 5,000 iu daily, and for Lil' Chris and Ayla, I've been giving them about 1,500 iu daily which is good for their age. I know of one CFer who said she was going to try it, so how about you??? :) Let me know if it works for you too!! :)

We had such a nice lil' mini vacation:) It was just what we all needed!! It was so nice and relaxing. The 8 hour trip went very fast for me b/c my sister D got me hooked on reading Twilight. LOVED IT!! Now I want to take another long trip so I can read the next book in the series:) LOL!

YEA!!! We FINALLY got to meet Cameron!! My best friend, Christi, had her first baby 4 months ago and I finally got to meet him!! He is just the cutest lil' guy!! He's going to have the girls lined up around the corner with those baby blue eyes:-)

The pic above is of the cousins...Lincoln, Ayla, Nathan, Tyler, and Lil' Chris. Nathan looks great and his hair has even grown back in!! YEA!! He is doing very well, thank you all for your prayers for him and Lil' Chris:)

One more bit of good news....my new District Manager told me today that he is going to come to our walk for Cystic Fibrosis on May 14th here in Wooster!!!! YEA!!! Thanks Jason!! Good thing I got everything all set to go LOL:)...food, entertainment, prizes....I'm READY and can't wait!! :)

M

PS. Don't forget...next CF fundraiser is on Wed April 20th from 5-8p at Wooster's CiCi's Pizza!!

Test Results / Cure to the Common Cold???

Here are the results from Lil' Chris' chest x-ray, blood work, and throat culture from last month and what the dr said about them...

-Chest x-ray came back normal. YEA!!! :)

- vitamin D level is normal- "this is great and hard to do in the winter" the dr. said :) I guess the Coromega Omega3+Vitamin D and the gummy Vitamin D's I have been giving him this winter really helped!! We are going to continue to give the kids these year round since the whole house went ALL WINTER WITH NO COLDS!!! Can you believe it??? This was a first!! My husband and I had a sore throat at one point, and I remember feeling sick one day, but completely fine the next, so I guess it was just allergies, but THAT WAS IT!! Have we found the CURE to the COMMON COLD??? My Dad was the one who told me about Vitamin D and I guess he was right!! Maybe it IS the cure to the common cold!!! "THANKS SO MUCH DAD!!! It's soooo important to keep Lil' Chris as healthy as possible and your knowledge on Vitamins has helped him soooo much over the last 3 1/2 years of his life!! Between all the Vitamins you gave me to take when I was pregnant with him, and all the Vitamins you suggest he take like the Omega 3 and Vitamin D and Vitamin C's, AND with the AWESOME air purifier you gave us, and your knowledge on how important exercise is to the lungs, and not to mention your awesome donations to the CFF....I honestly believe you have single handily helped save and extended my son's life!!! I will never be able to repay you!! All this combined is the greatest gift you could ever give me....a "healthy" Cystic Fibrosis son!! I LOVE YOU, DADDY!! YOU ARE THE BEST DAD IN THE WHOLE WIDE WORLD!!!!!"

- allergy testing: "Looking at his results, the only thing that probably causes a problem, or is high enough to consider abnormal, is cats or cat dander. I would still avoid broccoli (that lab is a special send-out) since after you have a reaction, the next reaction can be more severe."

- GGT- "this is a test of liver health, as are some other tests that were sent (AST, ALT). His GGT is mildly elevated(his GGT=50 and standard range is between 3 - 22), and something we will likely keep an eye on over time, but nothing to act upon right now." ;-( I'll definitely be asking about this at our annual visit!

-Throat culture- sensitive staph aureus like the last few times. YEA!! No big bad bacteria!!! Thank you Lord, b/c Nathan, my nephew, is coming in a couple of weeks and if Lil' Chris had a bad bacteria, then they wouldn't be able to be around each other since Nathan has Leukemia.

We will go over everything in detail at his annual visit next month, so I'll let you know more then. As for an update on Lil' Chris...he continues to do GREAT!!! He amazes me everyday when I look at him and think about how much worse it could be right now. I'm praying, praying, praying that a CURE will be found before he gets worse!! The donations have been rolling in, so that gives me HOPE:) Thank you to all who have donated so far!! It literally means the world to our family!! If you haven't donated yet, but would like to, click here to make a difference today!!

Thank you for all your prayers and keep them coming!! :)

M

CF Update / Ayla's Potty Training

Lil' Chris has a CF clinic visit coming up on 3/16 and his cough has gotten much better! Some days he coughs a little and others he doesn't cough at all...weird, but I'm just glad that it is sounding better than before. Thank you all for your prayers and keep 'em comin;-)

Week 1

Week 2

Ayla has been doing GREAT potty training!! She got 7 stickers yesterday!! WooHoo!! She's been only having about 1 accident a day! Not bad for a 25 month old and only being trained for a week and a half!! I'm so proud of her!! She even likes going on the BIG potty already:) One problem though....she's too smart!! She learned pretty quick that in order to get Mommy's full attention, all she has to say is "Poopy on the potty, Mommy!" So of course I put my fundraising stuff away and jump up to go put her on the potty.....and.....then....she....directs me to the couch instead. She just wants to sit with Mommy and play:) She's too funny! She gets me every time, b/c the one time I don't....well...YOU know;-) LOL

Been making good progress with fundraiser stuff:) I just need another day without the kids so I can make some phone calls for the walk. Got some good raffle prizes and Chris and I are almost done making the CF commercial!! Once the commercial is done, I will put it on my Great Strides page and then be emailing everyone on my email list for donations, soooo....get your checkbooks ready everyone;-)

I have a request, my nephew Nathan could really use your prayers. He has Leukemia and his counts are low which is dangerous and he isn't able to take his full chemo. Please keep him in your prayers.

Thanks for all your prayers!!

M

PS. Don't forget to join us on Monday, March 21st at CiCi's Pizza in Wooster between 5-8pm for my first fundraiser for Cystic Fibrosis for 2011!!!

Hit 800 HOURS on the VEST on Valentine's Day!!

I can't believe my lil' boy has wasted 800 hours of his life doing his Vest treatments!! Erks me, but when I think about how much it helps him, I don't mind as much;) He's getting more and more into playing his DS games now as you can see in the pic above;-)

He actually hit 800 hours on Valentine's Day!! The day before Valentine's Day, the kids and I made cards for Daddy by doing paint hand prints:) Then while I was working on Valentine's morning, they made cards for me with Daddy:) We had a fun day once I got home from work. We opened cards and presents, then played with Big Foot(one of Lil' Chris' presents;) He was a little scared of it...well, he still is scared of it, but he loves it tho;) LOL!

Then we made Valentine cookies!! The kids had a blast helping!! Daddy...not so much, but he helped anyways;-) LOL! They turned out pretty good!!

After that, we went to go watch Daddy play his last indoor soccer game! Spencer gave us all Valentine's;-) Thanks Spencer!! The kids had fun playing and running all over esp at half time when they got to go out on the field. I always feel bad taking them out there, b/c then the guys feel like they can't practice. They are all nice and let Lil' Chris shoot some goals:) Thanks guys!! Daddy signed up to play another session that starts next week!! YEA!!

Photo and video editing at www.OneTrueMedia.com

Chris and I celebrated Valentine's Day the day before by going to dinner and a movie!! We saw "Just Go With It" with Adam Sandler, it was great! It was sooooo nice to get out and go on a date with my man:) I wish we could have date night like once a month or something, but our schedules are always weird and I feel bad asking Oma and Opa to babysit even more than they have to. Thanks Oma and Opa for always babysitting!! Special thanks to Oma for helping out with some vacuuming and cleaning too since my back has been hurting:)

Speaking of my back....it's a lot better than what it was, but it still hurts when I lift heavy things or move or bend certain ways. At least I can sleep a little bit better and don't have to grab onto my treadmill when I get out of the bed anymore;-) LOL! I think my back is getting better b/c I haven't been doing as much lifting and I have been stretching and icing it. The Vest machine alone weighs 30 lbs, so I had stopped lifting it up and down, that seemed to help. Now if only Ayla didn't need to be picked up all the time;-) LOL!

Lil' Chris has been doing good with taking his Bactrim. His cough is still def there tho and sounds nasty. I hope it goes away before he is done the Bactrim. BTW....in my last post I posted a video of him coughing....well, I forgot to mention that he was chewing his Chewable Vitamax vitamin when he was coughing, so he didn't actually cough something up and then started chewing on it;) I know it looked that way and I forgot to say something. Sorry to those who watched it and was totally grossed out;-) LOL

Please say a prayer that Lil' Chris' cough goes away and that his cousin Nathan with Leukemia gets better. Nathan just got out of the hospital and has RSV. His counts are low, so he needs a lot of prayer to get them back up.

Thanks,
M

3 1/2 year CF Clinic Visit 12/15/10

So sorry it has taken me this long to update you on Lil' Chris' last CF clinic appointment 5 days ago. I have been so exhausted lately!! It's tough working retail full-time, taking care of the house chores, and being a full time mom (especially to a CF kiddo) this time of the year. I'm trying my best though.

His 3 month check up went well. His weight was 36.2 compared to 34.5 3 months ago. His height was 40 inches compared to 39 1/4 inches 3 months ago. His BMI was 55% which is good(not sure what it was last time). The clinic updated to be all electronic now, but the printout that we get at the end of the visit STILL doesn't show all the measurements and percentiles like I wish it would!! I still have to ASK what they are and then try to remember them. I may have to talk to someone about that;-) lol

His CF doctor said his lungs are clear and he is doing GREAT!! She said not to change a thing! Question....is it weird that she didn't ask one thing about his Vest?? Like...is he doing it??? LOL!! Maybe she just forgot;-) At least WE know that he is getting his Vest every morning and night for 30 minutes each:) LOL

She put in his (electronic;) file that we are giving him 500mg of Vitamin C and Coromega Omega 3 + Vitamin D every day. She didn't seem to object that we are giving him these, and they seem to be keeping colds away, so we are going to continue to give it to the kids, esp Lil' Chris. CysticLife posted this on Facebook and I thought it was interesting since the extra Vitamin D seems to be working so well for Lil' Chris...http://www.foodconsumer.org/newsite/Non-food/Drug/denufosol_helps_cystic_fibrosis_1912100916.html

2 cool things happened at clinic this time....1. Ayla wanted to wear a mask(you know...she DOES have to do EVERYTHING her brother does;) so I put one on her and she left it on!! I couldn't believe it!! She's becoming such a big girl! 2. The cool nurse let Ayla have a hospital bracelet too!! She was sooooo excited!! Sometimes she wants to be so much like her brother that she even asks to take pills before she eats and will once in awhile ask to do the Vest too:) lol! Poor kid doesn't realize how good she has it yet.

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Lil' Chris got a throat culture, so please pray that it comes back normal. I'll let you know when I find out. I was telling the nurse that Nathan(my nephew with Leukemia) was planning on coming to visit us soon, but his counts are down right now...she said that it would definitely not be a good idea for Lil' Chris to be around him when his counts are down, especially with what Lil' Chris has cultured in the past. It's just too dangerous for Nathan. So please also pray that Nathan's counts go back up so that we can get together in the next couple of months.

I think that's it for now, I've got to go to bed and get up early for work tomorrow again...housework didn't get done AGAIN, but oh well, I really wanted to update you all on how his visit went:)

Thanks for all your prayers,

M

PS. Next update......Christmas pics!!! YEA!!!! MERRY CHRISTMAS!!

Clinic Visit

MY BIG, BRAVE BOY....

Today was Lil' Chris' clinic visit. He goes every 3 months just like most CFers. This was the first time Daddy and Ayla didn't come with us;( Although we missed them, we still had a GREAT visit!! He wore his hospital mask from the parking lot to our room, and then in the hallway when he got his height and weight check, and then from the room to the car! What a BIG 3 year old, huh? He makes me more proud every time we go to clinic:) He did such a good job and was such a good boy the whole time, that I took him to Chuck E Cheeses as a reward:) He had a BLAST!! I LOVE watching him have fun and seeing his BIG smiles and hearing his cute lil' laughs:)

Here are some pics from our day....

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His height and weight were good I guess, this new doctor didn't really say much. She didn't even tell me his percentages or BMI! I wish they would at least put it on the paper that they send us home with! Anyway, his weight last time(3 months ago) was 33 lbs and 2 ounces, this time it was 34 lbs and 5 ounces. So he DD have a gain...YEA!! Not sure how, since he doesn't eat much and hasn't been taking to the Scandishakes ever since the last time he was on an antibiotic! Last time his height was 38 1/2 and this time it was 39 1/4. Can't believe he is getting closer and closer to that 42 inches so he can go on the bigger rides;-) LOL! Next year will be so much fun!! :)

The doctor said that his lungs were CLEAR...YEA!!! I was a little worried, b/c he has a bad cough right now, but she did put him on another antibiotic;( I guess this is going to be the norm now...an antibiotic every other month;( That STINKS!!! But...at least he doesn't have to do any nebulizors yet...PRAISE THE LORD!! So he has to take 3.5 ml of Augmentin again for the next 14 days. I tried convincing her of doing the 21 days instead, to make sure the cough is gone b/c last time he was still coughing a little after the 14 days. She wouldn't go for it. I was told different doctors do different things. Our old dr. always did 21 days and this dr. always does 14 days, b/c the less time they are on antibiotics the better she says. I was told that to call at day 12 if he is still coughing and then she would prescribe another week. I guess we'll see how it goes and pray that his cough is gone by the 12th and doesn't turn into anything serious.

He got a throat culture done like usual and Lil' Chris did a GREAT JOB sitting on the table all by himself and he opened wide, stuck out his tongue, and said "Ahhhhh!" I was so proud of him!! The nurse got a great culture too...it had some yucky brown gunk on it. I've never seen that on his cultures before. I hope that isn't a bad sign. They told me they would let me know on Monday what the results are. They are going to tell me sooner than usual, b/c I told them that we are going to be around Li' Chris' cousin, Nathan who has Leukemia, next week. They said that if he cultures something bad, then he shouldn't go near Nathan, but if he cultures what he has been culturing lately, then he should be fine to go around Nathan as long as Nathan's white blood count isn't low. I asked if I could have some extra lil' kid masks just in case, so that the boys can at least see each other for a little bit. Please pray that Lil' Chris doesn't culture anything bad and that Nathan's white blood count is good and that Lil' Chris' cough goes away quickly.

A few weeks ago Lil' Chris started not wanting to take his chewable Vitamax. Vitamax is his CF vitamin. It consists mainly of vitamins A, D, E, and K. CFers bodies don't absorb these as much in the foods that they eat, so that is why they take some sort of this kind of supplement. I'm not sure why he suddenly started not wanting to take it, but I called the clinic and my favorite nurse sent us a couple of different liquid ones. He seemed to take to the Source CF one, so I told the doctor today and she gave us a prescription. It kinda stinks to go back to a liquid, but he NEEDS it.

Lastly, on our way out, we stopped by Kendall's room:) She is a fellow CFer about 15 months old in our area. I met her dad on Facebook and then I met her grandma in person at my Friendly's fundraiser earlier this year:) Today we got to meet Kendall herself, well almost, we got to see her for a minute and then they closed the door so they wouldn't share bacterias even though Lil' Chris was wearing his mask;) LOL! We did get to talk to her mom, Heather! She is super nice, they all are really great!! I wish our kids could have play dates, but CFer's shouldn't be within 3 feet of each other for risk of cross-contamination;( Maybe someday us parents can get together to chat though:)

Thanks everyone for checking in on Lil' Chris and for all your prayers. They are definitely working, so please keep them coming!!!
M

PS. Lil' Chris' cold seems to be gone...YEA!! Ayla's nose is still a little bit runny:(

Update / Montage of Summer Pics;)

Sorry it's been so long since I've updated. Any spare time we've had lately, we've been searching for a new car for me. We are taking advantage of test driving different vehicles with a third row seat while Oma is still here. It's too hard to try to test drive cars with 2 kids, b/c of the car seats and you know....them screaming;) LOL Anybody have any suggestions for an all wheel drive SUV with a third row seat, or a nice all wheel drive van(I'm trying to stay away from a van, but they are kinda convenient with 2 kids...we'll see;)

Can you all please say a pray for my nephew Nathan? He was running a fever today so they had to take him to the hospital! There is no obvious signs of infection, probably just a virus, but he is staying overnight to be monitored. Please pray he gets better soon so he can go home to his 2 brothers. He has been a champ lately with all the chemo and everything. I'm so proud of him!!

Lil' Chris has been doing well. He and Ayla have been having fun playing with Oma:) Thanks Oma for babysitting, doing wash, dishes, and cooking!! You ROCK!!

Here is a montage of some random pics of the kids this Summer. The first video is of Ayla coughing every time I told her to fold her hands to pray before dinner:) It was so funny!! She must have done it a million times, b/c we kept saying "fold your hands" and we could not stop laughing:) LOL

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Please also say a prayer for Lil' Chris' CF buddies Phoenix and Sophie. They need to get some answers soon. I HATE what CF does to these lil' bodies!!!!! Click on their names for their blogs.

Thanks for checking in,

M

PS. My next post will be about not one, but TWO blog awards I got recently;) YEA!!! Thanks girls:)

Update on Everyone and CF Question

Lil' Chris' antibiotic ended on Monday and he STILL has a lil' cough! He doesn't cough all the time, just once in a while or when he is crying. Problem is...it should be gone or at least not still junky sounding. I knew I should have asked for the usual 21 days instead of 14 days of the Augmentin!! Lesson learned...bad part, is that his LUNGS are the ones suffering;( I was debating all week whether to call the clinic or not, but I wasn't sure b/c like I said...it's only once in awhile. Well, today I took Ayla to the pediatrician and I had to take Lil' Chris with me unfortunately(we try to keep him out of the dr.'s office as much as possible, but my hubby had to work and the sitter was busy). Anyways, their dr. heard him cough and she thought it was junky sounding too. I felt better when she said that, b/c now I know it's not just me! She suggested to keep an eye on him this weekend and if it's not better by Monday to give the clinic a call. So that is what I'm going to do. Do any other CF mom or dad's out there have any advice?? Has this happened to your child before?? What did you do?? How about any adult CFers??

I got a call today from the Dietitian at the clinic and she suggested to continue doing 1 scandishake a day and also add this new juice. I forget what it is called, but it comes in apple so I'm hoping that he will like it. He HATED the Breeze juices. I'll let you know when we get our order in. BTW, we got approved for BCMH again for another year!!! YEA!!! I don't know what we would do without this secondary insurance for him! It pays for EVERYTHING!! His enzymes alone cost $1 for each pill, and he takes 3 with every meal and snack, so that's like $15 EVERY DAY!! We got approved for "formula" again too....that means his scandishakes and this new juice thing are covered. Thank God for BCMH!!

Ayla's visit went great!! She unfortunately had to get 2 shots in her legs;( She's a fighter though! She ripped the bandaide off as soon as she stood up! lol

My ankle is still the same....wish I had better news. It is still swollen around the ankle bone and I can't move it from side to side. At least I can walk ok with it now:) I've noticed that I can't walk in grass...apparently it's not flat. I never realized how uneven grass was before!! I DEFINITELY can't walk up a hill....found that out the hard way!! LOL

As for Lil' Chris' cousin, Nathan, who was recently diagnosed with Leukemia...he is home and doing well! He had to go get his chemo today and some shots, but is home now and I hear that he is eating my sister-in-law out of house and home:) So glad he is gaining back the weight that he had lost before his diagnosis! The steroids apparently make him hungry and he is loving the Danimals that Lil' Chris loves too:) I wish they lived closer. I know that this is going to give them a special bond as they grow old together....and I KNOW they WILL grow OLD together;-)

Please continue to pray for Nathan and Lil' Chris.

Thanks,

M

Nathan is Coming Home!! / Update on Everyone

Nathan is doing much better and is eating better now aaaaand......He even gets to go home today!!!! Isn't that a miracle?!?! They said his levels look good!

Even though he started his chemo the other day and is getting 2 steroids daily, he still had a big smile on his face when we skyped him the other night. Check out the montage below to see them putting smiles on each other's faces. Lil' Chris had to give Nathan a tour of our living room;-) LOL

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Nathan had to get a PICC line the other day, you know.... I never thought of one of the other kids in the family having to go through hospital stays, PICC lines, Ports, etc. I knew it was a possibility for Lil' Chris and I am prepared for that thanks to all my great adult CF friends and their videos and explanations, but to have my lil' nephew go thru this is just a shock to us all. For those who don't know what a PICC line looks like, here is a video that my buddy Josh did... (if the link below doesn't work, then click here)....

Nathan's PICC line will be coming out since he is coming home now. He will have to go to the clinic once a week and get pricked for his chemo each time;( I'm so glad I was able to convince my sister-in-law to sign up for CaringBridge to keep us all updated better;) Click here to sign up to get her updates.

Lil' Chris' cough is still there, but it is getting better. He doesn't cough all the time, just once in a while, but it is still a wet cough. We are almost out of his Augmentin, so I'm starting to get a little bit worried that his cough may not be gone by the time he finishes his 14 days. I think we should have done the 21 days like our old CF dr. used to have him do. I guess now I'll know for next time.

As for my ankle, the swelling has gone down quite a bit, but is still swollen on the ankle bone, which is where it hurts the most esp if I turn it the wrong way or step on it wrong. The bruising is looking better too, but is still multiple colors, just lighter now;-) LOL



So on top of limping around and wearing 2 different shoes b/c my ankle is so bruised, I also have a black eye now!! I can only imagine what people must be thinking of me now!! LOL Lil' Chris was sitting next to me on the couch doing his Vest, (and when I say sitting, I mean practically on top of me;)he went to shift positions and somehow the back of his head smacked me right under my eye! Let's just say I saw sparks!!!! It felt like someone had just punched me! Now, this has happened numerous times before, (b/c he is not too careful about flailing his head around your face, esp if he is getting tickled or something;) but this time it REALLY hurt and 2 days later people at work started saying..."Do you have a black eye???" So here it is, this is a pic of me shaking my head about the whole situation....
I'm so glad to have the weekend off. Maybe my ankle and eye will heal all up before I go to work on Monday;) LOL
M
PS. I haven't forgotten about Lil' Chris birthday pics;-) They are coming soon! Please continue to pray for Rachel's family.

Our Heros

Well, I think this new header pic says it all...

Lil' Chris and his cousin Nathan truly are

"Our Heros"!!!

Steph's Thank You...

My sister-in-law put this thank you in the comments, so I thought I would post it in case you have been praying too and didn't see it....

"Thank you to everyone who does not even know us! Your prayers are greatly appreciated! Going through this gives us a different insight to how M & C feel. It is devistating enough knowing there is this horrible disease attacking a family members body, but it's a totally different feeling when it is your own. Although diagnosis' are different, the feelings a parent goes through throughout these processes are the same! It's undescribable, but you just know, & I can relate better to the feelings that M & C had & still have. I love you guys very much & we have amazingly strong and super brave boys who are absolute fighters!!!!!!!"

Steph is right. Our boys ARE strong and SUPER brave and they WILL beat the odds!!

Steph and I now have an even closer bond...not one that I would never have wished for though. We have both sat and listened to the dr.'s horrible diagnosis of our kids, we have both cried a river as to why this has happened to OUR family, we have both had to break the horrible news to rest of our families, and we both have realized that our lives will never be the same again.

Steph, I will always be here for you whenever you need me! I wish I could take Nathan's cancer away, just like I wish I could take Lil' Chris' CF away. All we can do is have FAITH together and pray our babies pain goes away forever!

Love You Steph and Nathan!

M

PS. Thank you everyone for all of your prayers, and please continue to pray for Nathan as he started chemo yesterday.

Nathan's Diagnosis

If you have read my last couple of posts, you are probably wondering what my nephew Nathan was diagnosed with this past Thurs. I didn't want to say until my sister-in-law announced it publicly. Today she did. I'll let her tell you in her own words...

"Thank you everyone for your prayers...keep them going, we definetly need them! For those who may not know yet, Nathan was diagnosed with Leukemia (A.L.L is the type). We are looking at 3 years of treatments. A very long road ahead of us. He is brave and strong, I am so proud of him!!!!! I, on the other hand, am not as brave or strong, so yea, your prayers are so needed right now, and through out this long journey!"

Thank you everyone for your prayers, and please continue to pray for them, especially Nathan as he starts his treatments. He will be in the hospital for the next month.

The pic above was taken last week when we were on vacation to go visit them and get a family pic taken. Lil' Chris is in the middle, Nathan is on the right, and Nathan's younger brother Lincoln is on the left. They had so much fun that day posing for the camera..... that is....once the "real" photographer left;-) LOL Shhhhhh....don't tell them we took pics while we were waiting;-) LOL!!

WE LOVE YOU, NATHAN!!! FEEL BETTER SOON!!! WE ARE ALL PRAYING FOR YOU!!!

M

Please Pray for Nathan and His Family

Haven't gotten much sleep. I'm sick to my stomach about what my sister-in-law, brother-in-law, and their 5 year old son are going through right now. It brings back so many memories of the terrible news we got a little over 3 years ago, even though it is a different diagnosis. Except we didn't have 2 other children to tell the horrible news to, a 4 and 12 year old. Praying for Steph, Greg, Tyler, Lincoln, and Nathan as today is going to be a very tough day for their family. Please take a moment and lift them up in prayer and ask that God give them the strength to get through today and the days to come.

Thank you,

M