Our old CF Commercial that plays on MCTV. Still working on this years.

Wednesday, December 22, 2010

2010 Family Christmas Pics

Here they are, our 2010 Family Christmas Pics....








I hope everyone has a VERY MERRY CHRISTMAS!!!!
M

Monday, December 20, 2010

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.


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!!

Tuesday, December 14, 2010

Let's All "Tackle CF"


Hey Everyone, I got this really cool email about raising money for CF, so I thought I would share it with you so you can pass it along too so we can all help raise money for CF. I've shared this on Facebook once already, but here is a more extensive explanation....


Hi M,

My name is Seth Gonzales and I’m the coordinator of social media here at the Boomer Esiason Foundation.

My purpose in writing is first to introduce myself and extend to you an invitation to follow us on Facebook (www.facebook.com/boomeresiasonfoundation).

As a follower of your blog, I also wanted to make you aware of our brand new social media initiative that might be of interest to you, called “Tackle CF”. The Boomer Esiason Foundation is partnering with Samsung and Sears this month to help fight cystic fibrosis in a new way.

The idea is simple. For every one of these three social media actions taken, Samsung and Sears will donate $5 to BEF:

1) Twitter - tweet using #tacklecf
2) Facebook - share the Tackle CF clipboard with your FB friends (found on the Tackle CF website)
3) FourSquare - check in at any Sears or Samsung store

If any one of these social media actions are taken, Samsung and Sears will donate. The goal is $150,000. Even better, you can tweet, share on Facebook, or check-in on Foursquare as many times as you'd like. The program started earlier this month. As of now, we're near the $50,000 mark, but we need your help to reach our goal of $150,000.

If you would like to post about this, I can answer any additional questions you may have. Any help we get in spreading the word within the social media sphere would be greatly appreciated.

This is something very new we're trying with Samsung and Sears that's been a long time in the making. We're hoping for a great start to 2011 by reaching our goal.

Again, if you have any questions, my contact information is below

I appreciate your help!



Seth Gonzales
Social Media Coordinator & Rimington Trophy Media Relations
Boomer Esiason Foundation
483 10th Avenue, Ste. 300
New York, NY 10018

Office: 646-292-7946

Fax: 646-292-7945

WWW.TACKLECF.COM
The easiest way to help us in the fight against CF.

facebook.com/sethbef

www.esiason.org

Facebook Causes:
Boomer Esiason Foundation
Team Boomer

Facebook Community Pages
Boomer Esiason Foundation
Rimington Trophy
Team Boomer


TEXT: BOOMER
TO: 90999
Donate $5 to the Boomer Esiason Foundation

Monday, December 13, 2010

Santa Pics / Cookies / Snow / CF Update

Lil' Chris(3 1/2) and Ayla(23 months) getting their pic with Santa:)
Lil' Chris telling Santa what he wants for Christmas:)

My lil' Mrs. Clause;)


They are getting so big!!
Lil' Chris giving Ayla a hug:)


The other day I took the kids to get their pic with Santa at Walmart for free!! They did a really good job (even though you could tell they were a lil' scared;) NO TEARS!! YEA!! Lil' Chris actually told Santa what he wanted for Christmas!! I was SHOCKED!! I didn't think he would say anything....I felt like I was watching "A Christmas Story" when Santa asked him what he wanted for Christmas and there was that long pause.....then finally he said "A Robot!!" They had a whole bunch of the Alphie the Robot a few feet away, so he even pointed to it and showed Santa when he got off of his lap!! Too cute!! I was SOOOOO proud of him:)

Everybody kept saying how cute Ayla was in her Mrs. Clause outfit:) While we were walking around Walmart after their pics, all I kept hearing was "Awwww! Look how cute!!" It was so funny! A stranger even snapped a pic of her with his cell phone!! A lil' creepy, but I'll take it as a compliment for having such a cute kid;-) LOL!

When we got home, they took their naps(Lil' Chris woke up dry again:) so we made Christmas cookies!! They had lots of fun!! Afterwards they decorated them with these cool decorating markers!! They had a blast!!
Cool roller with different cutouts on it...

Decorating them with markers....


Finished product:)...(they tasted pretty good;)
This morning Lil' Chris was doing his Vest, but still wanted to watch Daddy get the snow blower out of the shed:)....

As for a CF Update....Lil' Chris was complaining of a sore throat all day yesterday and then threw up twice in the middle of the night. The first thing he said today, was that he feels better:) He said his throat doesn't hurt anymore. YEA!! Praise the Lord!! I just hope it stays away!

Thanks for all your prayers and keep them coming that we all have a healthy winter,
M

Sunday, December 12, 2010

Clinic Visit Coming Up!

Here is a pic of Lil' Chris and Uncle Greg in the big U-Haul when Oma and Opa moved into their place just 10 minutes from us... (he was giving a thumbs up;)
I am putting together my list of questions for Lil' Chris' CF doctor, b/c we have a clinic appointment coming up this Wed the 15th. Here's what I got so far...

1. New insurance: We switched insurance for 2011, so I have to make sure they get a copy and everything they need. Instead of using Kohl's, we are going to use Verizon, my husbands job. BTW, does anybody need an air card or a Verizon phone???? Lol:) Seriously...he can do it for you;)
2. The last time I tried calling for refills on his Prevacid and Enzymes, the automated thing said that there are no more refills remaining....JUUUUUST GREAT!!! So I figured since we are going soon, I would just ask them in person. (BTW, we still got them in the mail...isn't that weird???)

3. The last time we got our enzymes, one of the bottles had different enzymes in it. He takes Creon 6000, but this one was Creon 1212. The sticker said Creon 6000, so I think they just made a mistake and put the wrong ones in.

4. Will cats effect Lil' Chris and his lungs. Oma and Opa have a cat, and the people that lived there before them had a dog that shed. Just wondering if it will effect him.

Well, I'll let you know how the clinic visit goes. Please pray for a good weight gain, for a "normal" throat culture, and for no problems.

Thanks,
M

Thursday, December 9, 2010

YEA!!! LIL' CHRIS IS ALL POTTY TRAINED!!!

Guess what?????


LIL' CHRIS IS ALL POTTY TRAINED!!!!! YEA!!!!!!


He has been waking up dry at nap time AND in the morning!!! He has been wearing his undies too instead of pull-ups!!! I know he is only 3 1/2, but he seems like such a BIG boy now!!! ;)

Now if only we could get his sister potty trained;-) LOL!! I tried for a day a few weeks ago, but she had 8 accidents(on my FLOORS!!) and didn't go on the little potty at all. I could get her to sit, but as soon as she would stand up, she would pee on the carpet;( I was too stressed at that time already with Thanksgiving coming up, so I decided to wait til after the holidays. She's so funny though....when I tell her to go pee pee on the big potty, she goes and stands in front of it and holds her shirt up....one problem though....SHE'S NOT A BOY!!!! LOL!!!! She want to do EVERYTHING like her big brother;-) When I say everything, I mean EVERYTHING!! LOL!!!! She'd probably be easy to train if she was a boy, but....well....she's just not;) LOL

This was her first time wearing big girl undies:)



I've been getting questions as to how I potty trained Lil' Chris, so I thought I would share my secrets;) Every kid is different, so this technique may not work on your kid and it may not even work on Ayla. I guess you just have to know your kid and their likes and dislikes.

1. Click here to find out how we potty trained him during the day. We started potty training him in August of 2009, he was 26 months old. You can look at my archive on the right hand side of this blog(down a bit) to read all the potty training posts from then.

2. To potty train him during the night, we used the same potty chart as we did when we trained him during the day. This time he got 2 stickers when he woke up dry....one for his shirt, and one for his potty chart.

3. Every time he woke up dry he would get his stickers and a "small gift." I went to the Dollar Store and bought about $20's worth. Sometimes I would just give him one, or I would let him pick which one he wanted, or I wrapped them and gave it to him. He liked opening the "present." I think that's when he really started waking up dry every time;)

Here is a pic of him playing with one of his "presents" after waking up dry from a nap(he likes crafts;)....

4. Another thing that I think really helped, was him hearing me talk to one of the babysitters one day. I was telling her that he just wasn't getting it YET, but pretty soon one day he would just realize "OHHHH, I'm not SUPPOSED to go in my pull-ups!!" It seemed like after that conversation, he started waking up dry every time, except for that one time when he was up all night throwing up.

He has only had one accident in the last couple of weeks, so not bad!! All in all, it only took maybe 2 weeks to train him and one of those weeks he was waking up dry but in his pull-ups. He caught on pretty quick! I'm just sorry I didn't try it earlier;-) LOL!

Now for a CF Update:

Lil' Chris is still doing GREAT!! No coughs or colds for any of us yet!! YEA!! You know what that means though, right?? We are probably going to all be sick for Christmas;( Lol! Oh well, as long as we are all healthy by the time Nathan comes for a visit!

BTW, Nathan(my nephew who has Leukemia) is doing well. His hair started to fall out from the chemo, so my SIL got him a buzz cut...I like it!! If it wasn't winter, I would do it to Lil' Chris! :) Please pray for Nathan and my SIL and BIL as they will have to give him shots at home the next couple of days and then I think 4 days next week too. That's gotta be hard. "WE LOVE YOU NATHAN!"

Thanks,
M

Wednesday, December 1, 2010

Video of Ayla locking us out / No more Pull-Ups YEA!!

Here is the video if you couldn't see it in my last post where I explained how Ayla, my one year old, locked us out of the house the other day;-)




I still don't know how she did it, b/c she can barely reach the deadbolt!! I can't believe how fast that hour and 10 or 15 minutes went by!! Good thing it was 50 out instead of freezing cold;)

Lil' Chris has been doing so well with waking up dry, that I just put him down for a nap with his undies on instead of a pull-up. I sure hope he wakes up dry;-) LOL!! I'm praying for NO MORE PULL-UPS!! YEA!!
M

Monday, November 29, 2010

Ayla locked us out / Bad Night / Potty training



video

So, my lovely 1 year old locked us out of the house tonight! We were coming home from Oma and Opa's and I took Ayla into the house, put down my purse, and went back out into the garage to get Lil' Chris out of the van. When we went to go back into the house, the door was locked!! Ayla had locked the deadbolt! If I had my purse, I would have had the key, but I took it in when I took her in! Luckily I had my phone in my pocket, so I called Chris to come home. I also called a neighbor to come help us. Thanks Andrea and John for all of your help!!

After about an hour, Ayla was spent and said she wanted to go "night night." Since she didn't have her blankie, she took off her jacket and curled up on the floor with it in front of the front door and started sucking her finger. I tried to get her to get up to continue to help get the door unlocked, but she wasn't having it. She did a good job though the whole time. She stayed in the foyer where I could see her through the front door. She cried a couple of times b/c she wanted me to hold her. So at 9pm, I finally called the fire department and they came and couldn't get it. Then a police officer came and tried it and he was able to get it open!!! YEA!! I gave him a BIG hug and told him I loved him;) LOL!! I was just glad that Ayla was fine and that we didn't have to break a door or window to get in.

As for an update on Lil' Chris...He is still doing great!! One more day of November and still no cold, cough, or antibiotics YEA!!! We officially broke the curse of an antibiotic every other month in 2010 WOO HOO!! Now lets see if we can go all December too;-)

A couple of nights ago, Lil' Chris was up for about 3 hours throwing up off and on. We think he may have had some soy protein, b/c that is what usually happens when he has anything with soy protein in it. He was fine the next day though.

On a good note....Lil' Chris has been doing GREAT with potty training at night and nap time!!! His pull-up was only wet like 2 times all last week!!!!!! That's morning and nap time that he has been waking up dry!!! I can't believe my lil' 3 year old isn't so little anymore...but I sure am glad not to have to change sheets anymore, esp now that he has a full size bed;-) LOL!!!!

I hope everyone had a Happy Thanksgiving, we sure did!! Please continue to pray we make it through cold and flu season with no problems!

M

Thursday, November 18, 2010

Over 700 Hours on the Vest!!! / CysticLife=Cool Stuff:)






I've been so busy lately, that I didn't realize that Lil' Chris had surpassed the 700 mark!! He pushed the button by accident on the Vest machine yesterday and I was shocked to see 715 Hours!! Time flies, even when it's spent on a shaking Vest 1 hour EVERY day!!

In the pics above, you can see that the velcro straps are tight again! YEA!! So glad we got this 2nd blue Vest! The velcro on it is WAY better!! Plus, it's nice to have a second one for when we wash this one;)

As for a CF Update...Lil' Chris is doing GREAT!! PRAISE GOD!! I was just looking at his cold/cough/antibiotic lists on the right hand side of this blog and noticed that he is due for another cough soon and antibiotic...well, at least that's how it seems to have been going this whole year...every other month he has been on an antibiotic for a bad cough. We are trying REALLY hard to hopefully skip this month;) We went to Vitamin World and bought more chewable Vitamin C's (500mg's) and a new Omega 3. This new one has Vitamin D in it too which is GREAT for trying to prevent colds, so I'm told;-)


We weren't sure if the kids would like the pineapple that they added to this new one, but we bought it anyway and they LOVE it!! They each get one Omega 3+D and one Vitamin C every day to help keep the sniffles away;) Why? Because every time Lil' Chris gets a cold, he ends up with a bad cough, which ends up with antibiotics;( So we gotta keep those colds AWAY!! I was SO glad when one of our sitters told me that she had a cold a few days before she was supposed to come, so that I could find someone else. We LOVE our sitters...they "GET IT"!! :)

Lil' Chris' next CF clinic appointment is on Dec 15th. Please pray that he stays as healthy as possible and that all of us stay as healthy as possible since it seems like once one of us gets sick...ALL of us get sick!! Everyone at work can attest that I always carry my sanitizer;-)Mommy's gotta stay healthy to keep her boy healthy:-) I LOVE YOU LIL' CHRIS!!!!!!!!

Hey, do you guys remember me talking about how AWESOME CysticLife.org is?? Well, it's hard to believe that it's been almost a whole year that Ronnie and Mandi and their friends started CL!! They are doing something fun for their birthday, so here it is in Ronnie's words.... "It's time for the 2011 MEMBERSHIP DRIVE and we're dreaming big. We want 2011 new members to join CysticLife.org by January 11, 2011 (our first birthday). THIS WEEK'S GIVEAWAY TO NEW MEMBERS: Everyone that joins before 11/22 will be entered to win an iPod Shuffle. (Also, don't forget that everyone that joins during the drive will be entered to win an iPad!!) Join TODAY!!" http://www.CysticLife.org/ (Remember...you don't have to have CF or be a CF mom like myself to join CL. It can be ANYONE!! I love CL, b/c I know that there is always a place I can go to if I have ANY questions about CF or just want to learn more about CF!!)


CysticLife is also up for a Pixel award, isn't that sooooo cool?!?! Please vote and share this with anyone and everyone you know. How cool would it be for CL to win a web award? You can vote everyday!! http://www.pixelawards.com/nom_win_2010.php#Blogs VOTE VOTE VOTE!!

Thanks for everything,

M

Wednesday, November 10, 2010

Bad Night / Good Day

The kids(meaning Lil' Chris, Ayla, Chris, and our friend Spencer;-) got to meet Sponge Bob the other day at Panera Bread. We LOVE Panera Bread, especially since they supplied a TON of bagels for our walk for CF last year;-)


Lil' Chris didn't have a great night last night. He ended up coming in our room around 1:15am. He came to my side of the bed and wanted me to put him back in his bed. This isn't new, b/c lately he has been doing this b/c we are trying to potty train him at night time. I've been getting up to put him on the potty in the middle of the night, and now he wakes up by himself and comes and gets me, but he sometimes won't go on the potty, he just wants to go back to bed. I think it's b/c it's too late. At least he is waking up though and realizing it!

Anyways....last night I put him back in bed, and then about 5-10 minutes later, he came back to my side of the bed and BAM!! He threw up all over my side of the bed and floor before I could grab the trash can!! I thought he was going to be up all night throwing up like he used to when he was little, but he went back to bed and fell right to sleep for the rest of the night. He has been acting fine today, thankfully. It must have just been something he ate yesterday???? IDK, but today it's 61 degrees and beautiful outside, so we had a lot of fun at the soccer fields running around and kicking the soccer ball!! We were going to go to a Kohl's A-team event, but I didn't think he should go just in case.

The dietitian from BCMH came to our house today and said that Lil' Chris is doing GREAT!! His weight is 35.8 and his height is 40!!! He is in the 95th percentile for height and 75th for weight!! YEA!! She gave me some titles of a couple of children recipe books to order. Hopefully he will start eating more different foods soon, so it's not always just hot dogs or lunch meat or french fries.

More good news....The Cystic Fibrosis Foundation has teamed up with Warner Home Video and CVS Pharmacy again this year!! They are donating $5 for every DVD purchase of one of these holiday movies to the CFF:

-"The Polar Express"

-"How the Grinch Stole Christmas"

-"The Year Without a Santa Clause"

-"Charlie Brown's Christmas Tales"

I went to go buy The Polar Express today, but our CVS was all out...hopefully that's a good sign!! Please spread the word!!


Thank you all for all of your prayers!! Please continue to pray that we all have a very healthy Fall and Winter:)
M

Sunday, November 7, 2010

Fundraising Award / New Vest and Hoses

Poster at the awards ceremony above...
Close up of Lil' Chris' pic on the poster:)...

New Pipeline chart...


The award I was given at the award ceremony:) YEA!!...

A few nights ago, Chris and I went to an Appreciation Ceremony on behalf of the Cystic Fibrosis Foundation. I was awarded for all my fundraising efforts and for raising the most money for the Wooster walk this past year!! YEA!! It's all thanks to YOU all who donated and to Kohl's for all the $500 grants for most of my fundraiser!!


So THANK YOU to:

  • ALL my friends and family who donated
  • ALL my awesome neighbors who donated, did a bake sale, and came to the walk:)

  • ALL my Kohl's associates who helped out with all my fundraisers

  • My boss, Bob, for letting me do Jeans 4 Genes days at work for 4 months and to ALL the associates who participated:)

  • EVERYONE from the motorcycle run
  • CiCi's Pizza for letting me do most of my fundraisers there AND for the 12 or 13 different CiCi's Pizza that did Pin-Ups for CF for the month of May.
  • all the other restaurants I did a fundraiser at...Tumbleweed, Applebee's, & Friendly's.

  • my MIL for setting up a walk in NJ for Lil' Chris and doing other fundraisers as well

  • my sister, D, for setting up a walk in NC and doing fundraisers at her kids school and at a bouncy house.

  • and ALL that made the walk a success!!

I couldn't have done it without you ALL!!!! CF WILL STAND FOR CURE FOUND SOON!!!!




In other news....I had to order ANOTHER set of hoses for the Vest!! I think that's the 5th or 6th time since we got the new blue Vest and it hasn't even been a year yet!! YIKES!! Hopefully they improve the new Vests soon. I also told them that the velcro on the shoulder straps are not sticking very well anymore too. They said to just order a new one and when it gets too bad, we can just change it. So we got the 2 new hoses and new blue outer shell the other day. I haven't washed the new shell yet, so here is a pic of what the old one was doing...(we had to keep the straps in the back instead of the front to make it tight, b/c it stuck better back there but would still pop off sometimes)....



Thanks again everybody for all that you do for Lil' Chris!! We love you all!!
M

Monday, October 25, 2010

Carving Pumpkins / New BIG Boy Bed!!!

Last night was soooooo much fun!!! We had a couple of friends over and we had fun carving pumpkins!! YEA!! BTW, Chris won with his spider web;) It was pretty cool looking and it didn't even take him as long as I thought it would! Thanks Andrea and John for bringing your carving kit over and helping us carve the pumpkins:)

After that, John helped Chris put together Lil' Chris' new BIG boy bed!!! I can't believe he's actually big enough for a big boy bed!! He was starting to out grow his toddler bed. Lil' Chris was sooooo excited(pee pants excited;), he even tried helping put it together;-) Once it was all done, we weren't sure if he was going to be able to get up there all by himself or not, but before we could all make it up the stairs to see if he could climb up or not....he was already jumping up and down on it!!! It was great seeing his face light up!! I love watching him reach these kinds of milestones!


We told him that he can't wet the bed in his big boy bed, so we'll see if this helps with his night time potty training. He still wears pull-ups to bed and nap time. Hopefully this does the trick;) We are also hoping that he won't get out of bed so much anymore. Sometimes when we would put him down for nap or bed, he would get up and sneak downstairs and peak around the corner or he would just stand outside his bedroom door waiting to get yelled at. He's too funny, but it was only funny the first few times...if you know what I mean;-) Now with his new bed, maybe he won't want to get out of it since he likes it so much!! I know...wishful thinking:) So far, so good though! He didn't get out at all and went right to sleep, then again...he did have a very busy day and it was pretty late by the time he got into bed:) Only time will tell, I guess!


Although he is having a great night sleeping away in his nice big bed...Mommy lies awake worried that he may fall off or pee through. I was supposed to pick up a water proof mattress cover beforehand and I forgot. So I got up at 2:30 to put him on the potty and, well....here it is 5am and I am still awake! Oh well, who needs sleep anyways;) At least I can get this post done with no interruptions;) LOL!

Thanks again John and Andrea for all of your help carving pumpkins, putting the bed together, and for always watching the kids and being so good with them!!! You guys ROCK!! I don't know what we would do without you guys!!
M

Saturday, October 23, 2010

Halloween Pics 2010

Here are the Halloween pics we got taken the other day. So glad Kiddie Candids opened back up! I didn't like Picture People, and I just HAVE to get there pics taken every now and then. Pictures are really important to me when it comes to Lil' Chris, b/c you just never know when this disease is going to flare up.

Lil' Chris is 3 and Ayla is 21 months. Boy time flies!! They are getting soooo big!! You would never know by looking at these pics that Ayla was screaming and crying a minute before;) LOL! She doesn't like her picture being taken....I wonder where she gets that from;-) LOL!!!


Lil' Chris can't wait to go trick or treating!! He keeps saying "Halloween's coming soon!" :) Since we didn't get anything on our door this year as to when our development was doing trick or treat, another neighbor and I picked a date and time and printed the flyers and then went and passed them around to all the houses in our development! :) Thanks Andrea and Jon for all of your help!!! Our trick or treat is going to be on Halloween night, Sunday 31st from 6pm to 8pm. We can't wait!! Lil' Chris is probably going to go around to all the houses on his motorcycle since his costume is a biker;-) The apartments next to us are doing their trick or treat on Sat from 6-8, so Lil' Chris may be Spiderman for that one;-)

Last night we went to the pumpkin patch to pick out some pumpkins to carve tonight. That was the first time we walked all through the patch to find the perfect pumpkins for each of us. It was so much fun, even though they were all picked over since it's only 1 week before Halloween!! I never realized how different looking pumpkins could be! We saw one that was in the shape of a big apple!! :) Lil' Chris' favorite part was the wagon:) At night time, he said in his prayers, "Thank you for the pumpkins, and thank you for the red wagon!" Too cute!! Here are some pics from our perfect pumpkin hunting....



HAVE A SAFE AND HAPPY HALLOWEEN!!!!

M

Thursday, October 21, 2010

CF Update / Vest Question / Halloween Pic

Sorry it's been so long since I have updated this blog. Life has been crazy at work... we had inventory, and we've been hiring like crazy!! When I'm at home, I just want to relax and enjoy the kids:) Also, since watching 7 year old Conner and other young CFers pass away recently...it puts things into perspective that I need to spend as much time with Lil' Chris as I can and savor every moment, not spend it on the computer(no offense;) Don't get me wrong, I'm still going to update, just not as often.




Since I have updated last, I have had to order ANOTHER set of hoses for the Vest!!! Good thing they make it easy and they come the next day, otherwise it would be a HUGE pain! Does anyone else have this problem with the new color washable Vests??? Also, the velcro on the shoulder straps don't stick very well. I know of only one other CF mom who has had the same problem....does anyone else have that problem??? Just curious, b/c the last time I had to order hoses, I asked them if they get a lot of complaints about these 2 things on these new Vests, and they said no.

Last Thursday, Lil' Chris and Ayla got their flu shot. It has the H1N1 in it as well this year instead of them having to get 2 shots, so that was nice. Lil' Chris was complaining about his leg hurting after the shot and would barely walk on it. Once I took the bandaide off he was fine;) LOL! Also, we all 4 got our hair cut too! Yup...that's right...I said ALL 4, including Ayla!! It was her very first hair cut!! Well, to be honest it was more like a bang trim, but it's still cutting some hairs!! ;-) LOL! I didn't want to cut the sides or back, b/c she is a girl and I want it to grow out. Her bangs were getting into her eyes, so those really needed cut! She did a great job! She wouldn't sit by herself, but neither would Lil' Chris his first time;) The girl gave her a lollipop and she was good to go!! :)


No other news to report, which is GREAT!! No one is sick and Lil' Chris' cough went away with that last round of Augmentin, thank God!! Please pray we have a healthy Fall and Winter! If I forgot to mention...his throat culture came back the same as last time, nothing to worry about for now, PTL!!

Lil' Chris can't wait until Halloween!! He keeps talking about it:) We got their pics done the other day, so here is one of them...
Hope you all are doing well!!
M

Tuesday, September 28, 2010

First Domino Run for Lil' Chris!!!


This past Saturday, Sept 25th, we had the first ever Motorcycle Domino Run for Lil' Chris, and it was AWESOME!!!
There were around 45 bikers in all, not bad for our first one:) We had soooooo much fun, especially Lil' Chris! His eyes got so wide every time some bikes would come back from their 95 mile ride:) He LOVED watching them pull in and park their bikes! All the bikers were so nice and generous for coming out and supporting Lil' Chris. "Thank You to ALL the bikers!!!" One biker even took Lil' Chris for a little ride!!! He was a little unsure at first, but ended up LOVING it!! I loved seeing the smile on his face:) When Uncle Greg got back from his ride("thanks Uncle Greg for riding!!";) he took Lil' Chris for a ride too on his bike! Lil' Chris, Ayla, and cousin Lincoln even got to sit in a side car!! Pretty cool :)

Later, while the bikers were eating and enjoying themselves, all of a sudden Lil' Chris came riding down on HIS motorcycle!! Yup, that's right! I said HIS motorcycle;) Everybody applauded as he proudly road his bike down in front of all the other bikes that were there! He did such a GREAT JOB and I was SO PROUD of him!! :)

It was an AMAZING day! I just want to thank everyone involved in the planning and organizing and cooking and donating and riding!! You all are AMAZING and we are SOOOOOO very thankful for each and every one of you!! I can't express how much it meant to us that you would do this for our Lil' Chris:) THANK YOU, THANK YOU, THANK YOU!!


Here is a montage of our AMAZING day...(hence the 2nd song,"Amazing";) The first song was written and sung my adults with Cystic Fibrosis who know what it's like to have CF lungs, and the last song is Lil' Chris' favorite song, "Smile";-)....

So for those of you who are interested in what a Domino Run is, I'll try to break it down as much as possible....

1. The bikers check in as early as 8am and the latest 10:30am. They paid $20 each, and an extra $10 for a passenger. They got their directions and their first domino and they were off! The trail was 95 miles starting and ending at the church and there were dots painted on the shoulder of the road at each intersection so they knew where to go. One dot meant straight, 2 dots was left, and 3 was right.

2. There were 3 stops along the way where they would stop and get another domino. These were being tracked on paper at each stop, I believe:)

3. When they returned back to the church, they received their last domino and was given their total.

4. The bikers then ate tons of delicious food that was ALL DONATED by some awesome people!! I was AMAZED by all the food and wonderful helpers, especially this one guy who donated all the hot dogs and burgers and the big smoker/grill, AND then donated his time to stay and make it all!! He was just going to drop it all off, but then decided to stay and help out! BIG THANK YOU TO EVERYONE!! I never saw Lil' Chris eat a hot dog so fast, it was just that good!! :)

5. Then there was a 50/50 drawing, half of the money was supposed to go to the winner and the other half to Lil' Chris. When they pulled the winner he decided to give it ALL to Lil' Chris!!! I was SHOCKED!! Everyone was so generous and nice! THANK YOU RODNEY M!! ;)

6. Then they announced the winners of the Domino Run. The biker with the highest amount AND the biker with the lowest amount won a $100 Visa gift card! Pretty cool, huh?!! :) They also gave away a couple other prizes as well and cousin Lincoln won a $50 card!! WooHoo!!

7. Once they finished announcing the winners, I asked if I could say something on the megaphone. I was SO grateful for everything and everyone, that I just had to say a big THANK YOU!! As I was saying my thank you to everyone, Chris went and got Lil' Chris and brought him over. I held up the megaphone to him and he very quietly and politely said "Thank You Everyone!" It was the cutest thing ever!! Everyone laughed and cheered:) I was so proud of him!

Then it ended around 3pm. It probably would have ended sooner, but one of the groups got lost, but that's ok, because we were all having so much fun:) I hope we get the chance to do this again some day!!

Thanks again to Ron and Greg for giving Lil' Chris rides on your motorcycles!! Big thanks to Ron F. for mentioning Lil' Chris' name to be the cause for the ride which started this all. We are so honored you thought of Lil' Chris!!!! We can't thank you enough!!! You have always been a big supporter of Lil' Chris. THANK YOU!!!!
Thank you to all of our friends and family for going and supporting Lil' Chris!! It really meant a lot!
Thank you to my Dad and Tracey for taking some GREAT pictures and for letting me use them in the video above:)
Lastly, thank you to all the riders and to everyone who donated!!! It truly was an unforgettable, amazing day!!
M
PS. Thank you all for your prayers for Lil' Chris, please keep them coming as he is doing GREAT!!

Friday, September 24, 2010

Domino Run for Lil' Chris Sat Sept 25th!!


Tomorrow is the BIG day for the motorcycle domino run for Lil' Chris!! We can't wait to see everyone and all the motorcycles!! Lil' Chris LOVES motorcycles, so he is especially excited!! If you are around, please stop by and show your support!! It's going to be a lot of fun!! Click on the picture above for more details.


Special thanks to everyone involved in the domino run!! We sooooo appreciate you doing this for our lil' guy:) We appreciate all your hard work in putting this domino run together too, I do a lot of fundraisers, so I know all the work that goes into it!!
I'll try to take lots of pics to share with everyone;)
See you there,
M

Wednesday, September 15, 2010

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....


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:(

Tuesday, September 14, 2010

Put-In-Bay

Here are the pics I promised of our lil' day trip to Put-In-Bay. It is a small island about 2 hours from us and we got to ride around in a big golf cart!! That was the best part I think:) The kids loved it....me too;-)


First we had to wait for our ferry, then it took us to the island, then we had to rent our golf cart, then we got to take turns driving around the 4 or 5 mile island! We stopped at some stores, went swimming, saw the big tower, saw the rocky beach, and got to play a little too:) They had an awesome maze that Daddy couldn't figure out how to get through it, but Lil' Chris went right through his first time;-) So much fun!!

Can't wait to go back,
M
PS. Lil' Chris' cough turned into a wet cough, so I'm sure the clinic is going to put him on another antibiotic this Wed when we go for his appt. I'll keep you posted.

Sunday, September 12, 2010

CiCi's Fundraiser / Domino Run

I had another CiCi's Fundraiser on 8/19! It was a pretty slow night and I didn't really have too much time to advertise it. We were too busy searching for a new vehicle for me. We ended up getting a 2007 Dodge Caravan!!! I LOVE IT!! I never thought I would be a van person, but I fell in love with the convenience of it, esp with having 2 kids!! I only wish that I would have gotten one 3 years ago when Lil' Chris was first born;) lol



Anyway, back to the fundraiser....we only raised $80 in tips and raffle. I think that was my worst yet;( But again, I totally dropped the ball in advertising it. Lesson learned!!

This fundraiser was cool, b/c I got to actually meet an ADULT CFer!! I have only ever met one other adult CFer in person and never really got to talk to him, so this was pretty cool:) I was going around to tables doing my usual telling everyone about CF, the fundraiser, Lil' Chris, and the raffle. When I came to this one table,...before I could finish, she looked at me and said she knows all about CF, b/c she has it! I thought, WOW! Here she was looking as healthy as can be, having dinner with her hubby and 2 kids!! I was so glad to meet her and asked her a ton of questions! LOL! I'm really hoping that they will come to our walk next year since she lives in town:)

Lil' Chris sure did have a good time when they came at the end:) Special thanks to Spencer for coming and inviting friends to come too:)



Special thanks to my wonderful Kohl's associates who helped us get the $500 grant from Kohl's....

Stacie

Jill

Kaitlyn

Malinda

Patty

You girls ROCK!! Thanks for always helping us CF families!!! It means the world to us!! Even though we only raised $80, add the $500 and the 10% from the receipts and it should be around $700!!! Not bad!!

My next CiCi's fundraiser will be in October, b/c on Sept 25th my MIL set up a biker domino run for Lil' Chris!! This money will go towards Lil' Chris medical fund, which will one day be for a double lung transplant. You can never start too early raising money for a BIG surgery like that!! Thanks Oma for setting this up for Lil' Chris!! We can't wait!! I hope you all can join us in NJ for the Domino Biker Run:) If you have any questions, please let me know.
If you know any bikers, please spread the word!!! Thanks!!
M

Saturday, September 11, 2010

Remember 9/11


Please take a moment today and say a prayer for all the lives lost on 9/11 and for all of their family and friends that they left behind.
Even if you don't read this post today on 9/11, please still take a moment and say a prayer for all the families affected by this horrible tragedy.
Thanks,
M

Friday, September 10, 2010

CF Update / Inspiring Video / HAPPY BIRTHDAY to my HUBBY!!

Grab a tissue and watch this amazing, inspiring video...




To my CF buddies....Never give up!!!! I WILL NEVER GIVE UP ON MY SON AND A CURE FOR CYSTIC FIBROSIS!!!!

Now for an update: Lil' Chris' stuffy nose is in deed a cold I believe. It's hard to ever tell with him, b/c his nose doesn't just run and run and run like Ayla's. Instead it just gets clogged in his nose and ends up dripping down his throat I think. I guess b/c of the CF, it is thicker and stickier...IDK. The way I knew it was a cold, was b/c Ayla caught it 2 days ago and her nose has been running and running. Today it is a little better, but she is just very cranky b/c she doesn't feel good. My poor babies;( So far noone else has caught it. Hopefully we don't so that we can be around Nathan in a couple of weeks. On our CF clinic visit this Wed, I'm going to ask if it is even okay for Lil' Chris to be around Nathan. I don't want Lil' Chris to hurt Nathan in any way or vice versa.


Unfortunately, I think I hear a cough coming on for Lil' Chris;( This usually happens after his colds, probably b/c of the dripping down the back of his throat. Fortunately we have clinic in a few days. He'll probably be put on ANOTHER antibiotic if it doesn't go away between now and then.

Lil' Chris asked me today where Oma's car was, so I said that she went to the airport b/c Opa is flying in for the weekend for Daddy's birthday. He said, "Ohhhhhhh yeah! She's gonna CATCH him!" LOL!! This kid cracks me up on a daily basis with some of the things he says;-) LOL!




HAPPY BIRTHDAY to my WONDERFUL HUSBAND!!!! I LOVE YOU HONEY!! Can't wait til you get home from your new job so we can celebrate!!! This kids bought you a present:) Wanna know what it is??? I'll give you a hint.....it's freezing!!! ;-)

Monday, September 6, 2010

Update on Everything:)



Just a quick update....

Lil' Chris woke up today with a stuffy nose;( Not sure if it is a cold or just allergies. We'll see tomorrow, I guess. Yea, I have off tomorrow!!! lol :)

I ordered new hoses again for his Vest and they came in like 2 days...LOVE the Hill Rom Vest Company!!! I can't believe how quiet it is again!! The rings were starting to come off on the old ones and it was making a lot of noise although I could never find a hole or anything. I guess that must be common with these, b/c that's what happened last time. I would get mad, but they send the new ones out so quick and for free!!
Here is a pic of Lil' Chris playing with his old hoses...he found out you could blow through them, and talk and listen like a phone;) The blowing part was good practice for when he will have to do PFT's someday. I was trying to get him to blow real hard and hold it for a long time. We'll see if it helps someday:)


Lil' Chris has a CF clinic appt coming up on the 15th, so please pray all goes well and that he gains weight. I'm kinda worried about his weight like usual.....the kid just WON'T EAT!!! Drives me NUTS!!! Ever since he was on that last antibiotic, he hasn't been drinking his scandishakes right down like he used to. So yeah, I'm a little worried about his weight. Plus, this will be the FIRST time I will have to take Lil' Chris to the clinic all by myself!! My husband and I always take him together, but this time he can't come b/c he has training for his new job.....yup, that's right....I said "new" job;-) I think this one is a keeper;-) One good thing is that it's nice that Oma can stay home with Ayla....she drives us nuts at clinic. LOL! It's a long day for anybody, especially a 1 1/2 year old.

As for my ankle, it is doing much better. The swelling has gone down quit a bit and is almost all gone, I think:) It still hurts going down steps and moving side to side, but it's getting there;-)

Nathan, Lil' Chris' cousin with Leukemia, is doing much better. He is up and running(kinda;) and is getting back to his good ol' self from what I hear:) That makes me happy. Can't wait to give him a BIG hug!!! Did you know that September is Leukemia Awareness month???? Show your support by wearing orange this month and by changing your profile pic on fb to something orange. I bought Lil' Chris an orange shirt, so as soon as I get a pic of him wearing it, I will change my profile pic and header pic:) We love you Nathan!!

The above pic is of the kids waiting for our boat to come to take us to Put-In-Bay. It's a really cool island...more pics coming soon:)

Thanks everyone for all your continued prayers,
M

Friday, September 3, 2010

Blog Award....YEA!!!!

I have recently been awarded, not one, but TWO blog awards!!!! YEA!!!



The first one called "A Blog With Substance" was from Katey at "My CF Journey With God". Katey has always been a HUGE help to me, especially when I was planning my first Great Strides Walk!! I couldn't have done it without her. She is always more than willing to answer any questions I have for her, no matter how personal they may be;) She is a great source for me to go to since she has been there, done that. She is a 25 year old(I think;) with Cystic Fibrosis. If you ever have any questions, ask Katey, she knows A LOT about CF!! :) Thanks Katey for this awesome blog award and for always being there for me:)



As part of my acceptance post, I’m supposed to sum up my blogging philosophy, experience, and motivation in 5 words. So here they are:


Fun


Informational


Inspirational


Loving

Spiritual



Now I am going to give the “Blog With Substance” award to 5 other blogs that I really like and enjoy reading. I think these blogs (and authors;) are amazing!! Click on their title to visit their blog and tell them Lil' Chris sent you;)


1. Porter's mom, Melissa, at Chatterton Family Blog. Pray for Porter as he will be going under to get his tonsils and adenoids out and also a nasal polyp out. He is just the cutest lil' guy:)


2. Skye's mom, Kayla, at Skye is the limit. Skye has been going through a lot for a little CFer. Please add her into your prayers to get much better. Check out her blog to get updates on her.

3. Melissa's mom, Traci, at Keeping Up With the Liberto's. Traci and I clicked from the get go:) She was the first CF mom I met that had a CF kid the same age as mine. I think Lil' Chris is just 1 or 2 weeks older than Melissa. She has taught me a lot over the past couple of years. She was the reason I started potty training Lil' Chris when I did, b/c I got to see through her blog how well Melissa did:) Thanks Traci:) Traci is also pregnant with another lil' girl. I pray that she will not have CF like Ayla.

4. Phoenix's mom, Angela, at Phoenix's Fight. If you have been following my blog for a while, you have probably seen me mention him a few times before. He is the cutest lil' kid and does so well with what he has to go through on a daily basis thanks to CF. Angela does an awesome job raising money for CF. I wish I could do all that she does. Go Angela!!! :)

5. Sophie's mom, Gemma, at Lungs Behaving Badly. Sophie is about the same age as Lil' Chris too! I just recently met Gemma when she awarded me with the "I love Your Blog" award!!! :) I'm so glad she did, so now I can keep up with her blog:) Her blog is great, so check it out!

I hope you check these awesome blogs out! They are GREAT!!

Well, Ayla is calling me, so I guess I will have to share the other blog award next time;)

If you have a blog and have never received a blog award, leave me a comment here so I can share the love;) Or if you have already received them before but would like another, just let me know;-)

Thanks,

M

Saturday, August 21, 2010

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

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:)

Friday, August 13, 2010

Update / Montage / New Header Pic

I LOVE this pic of Chris and the kids!! I just had to make it the new header pic:) It was when we stopped to look at the big lighthouse in Marblehead(those pics coming soon;)



Here is a montage of pics and video's that I had on my cell phone. My new phone is a 5.0 mega pixels, so they didn't turn out too bad(way better than my last phone;) lol

The first few pics are of our trip to Great Wolf Lodge Indoor Water Park. Unfortunately I didn't get any pics of the water park on my phone, so those will be coming soon;) The rest of the montage are just random pics and video's from this Summer:) There are pics of Ayla climbing up to my laptop and pretending she was Mommy;) (BTW...she came down the stairs yesterday all by herself!! On her butt of course, but it was a big moment for us;-) Then video's of Lil' Chris singing, jumping, and dancing slow and fast;-) I like the one of Ayla wiggling and playing the drums;-) lol Enjoy!!

I haven't had time to edit the birthday pics....it's like 20 minutes long and I just don't have time anymore. I may just post it "as is" LOL!

As for an update...Lil' Chris' cough seems to be gone. He coughed a little when we were at the water park, but since we have been home he hasn't been coughing much...Thank God!! Ayla is getting so big and talking more and more. Her fav words are...NO & MINE!! I guess that comes with the territory when you have an older brother;) LOL Oh yeah...and MORE, b/c she is always hungry:) lol Although, she doesn't eat as much as she used to, but still way more than her brother that's for sure! I WISH he would eat more than just hot dogs and french fries!!! He is so stubborn, he won't even TRY new things!! Drives me nuts, b/c I know his body needs extra calories and stuff!! Sigh;(

My ankle is still the same pretty much. It's still swollen around the ankle bone and still hurts when I move it certain ways. It's been over 5 weeks!! I'm just glad I can walk mostly normal;) It just mainly hurts when I walk in the morning when I get out of bed. I'll give it another few weeks. I'm praying it heals 100% soon!!


I have a request...please pray for some of Lil' Chris' CF buddies, they need your prayers. Skye and Ben. Click their names to see their blogs.


More pics to come...maybe while Oma and Opa are here this weekend I can steal away and try to get some more pics posted for you all;-)


Thanks,
M
PS. HAPPY ANNIVERSARY TO MY WONDERFUL HUBBY!!! 7 years married and 13 years from our first date;-) I LOVE YOU HONEY!! Thanks for a great weekend at Great Wolf Lodge!!



Friday, July 30, 2010

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

Saturday, July 24, 2010

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



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.