Disney 2012 Vaca Photo Book

Check out this Photo Book we made by Shutterfly of our 2012 Disney Vacation...(better late than never, right??) LOL

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Summer Vaca Fun / Cough:(

I was on vacation this past week while my husband had to work, and the kids and I had a GREAT time together!! We did many outside things in between rainstorms all week. We went to 2 different spray parks, pool, and even had fun with their old blowup pool with slide!! I guess we had too much fun, b/c by Thursday, Ayla's nose started running non-stop. At first we thought it was allergies, but when it kept running ALL day, we thought maybe it was a cold. Lil' Chris started with a stuffy nose too. Then he woke up Friday morning with a bad productive cough:( I've been hearing a lot of people having allergy issues with all these storms and hot weather, so I still don't know if it's their allergies or a cold. 

Lil' Chris' cough may be from post nasal drip, b/c his nose is stuffy. So, my last day of vaca(fri) was spent doing treatments and giving meds. We want to get rid of his cough ASAP before it gets deep down in his lungs. We've been doing more treatments to help him get it up and spit it out so that it doesn't get down in his lungs and start growing bad bacterias which could lead his health down a very wrong path.When I called the CF nurse to ask if we should increase the Pulmozyme to 2 times a day, she said no, to just increase everything else and maybe try Mucinex which works like Pulmozyme to help thin the mucus to help get it out. He has been doing a GREAT job with the extra treatments, and has spit out mucus a few times now!! Ayla has been doing her Albuterol puffer too along with Lil' Chris and has been taking a cough suppressant, b/c she started with a lil' cough. They like doing the treatments together:)

Here is what we have been doing...
After breakfast...Flonase, Mucinex, Albuterol puffer, Vest-30min, Acapella
After lunch...Albuterol puffer, Vest-30min, Acapella
Before bed...Flonase, Mucinex, Albuterol puffer, inhaled Pulmozyme, Vest-30min, Acapella

I will keep you posted on how they are doing. Please pray that his cough goes away quick and he doesn't get any bad bacteria's in his lungs. We know that every time we go somewhere...there is always a risk of him getting sick. You never know if there is another CFer there, or if another kid is sick, etc.... We try not to keep him in a bubble though.

Above is just 2 of the many video's I took this vacation:) I wish I could post the pics, but blogger isn't letting me right now:( I did post some on facebook though.

Praising God that 10 year old Sarah with CF is doing well with her new lungs. She had to get another set of lungs 3 days after the first set, but is doing better and got all her chest tubes out!! Please keep her and the 2 donor families in your prayers.
M

Ayla's 3rd Birthday Pics and Video & Lil' Chris' old 3rd Birthday Video :)

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I can't believe my baby girl is 3 years old already!!! She is getting so tall just like her big brother:) Check out the video above of her 3rd birthday...She picked out the song ;)

For her birthday, the 4 of us went to Disney World at the end of January!!! We had sooo much fun!! It was their 2nd time going! More pics to come:) Minnie is her fav:)

Things she's doing now...

We started potty training her the first week of January and my goal was to have her ALL potty trained by her birthday 1/29...I'm proud to say she did it, and is 100% potty trained!!!! She didn't even wear any pull-ups in the long car ride to Disney!! She has had only one accident since before her birthday and that happened just the other day. She has been daytime potty trained since March of 2011 when she was 2, but now it is sooooo nice that she is potty trained at night time too!!! I know she could've done it earlier, but I guess my husband and I were just being lazy and didn't feel like changing sheets in the middle of the night yet;-) LOL! In the beginning of potty training, she would call for us at least once in the middle of the night to go potty, but for the past month or so, she has been holding it ALL night like her big brother!!! Sooooo proud of her!!! And I'M soooo happy to not have to get up in the middle of the night anymore;-) LOL

We changed her crib into a toddler bed once she turned 3, just like we did with Lil' Chris when he turned 3. She liked it at first, but then when it was bedtime, I think she missed being the baby;) She wanted us to pick her up and put her in just like when it was a crib. She also has not gotten out by herself in the morning either. She will stand up and call for us, just like she used to in the crib. This is kinda good and bad...good b/c she never gets up a million times like her brother does, bad b/c she's trying to act like a baby still, and also bad b/c then WE have to get up and go get her. That was the big reason I wanted to change the bed, so she could get out herself and not call us to go get her since she is usually the first one up around 8am!!! Oh well, she'll learn soon enough I'm sure. For now, I should enjoy it b/c if she's anything like her brother...she'll be driving us nuts soon getting up and down out of bed and not wanting to go to sleep!!! LOL

Her hair is starting to get really long. She HATES it when I try to put ponytails in so it's not so wild and crazy when we go out!! LOL

She is talking A LOT, maybe a little too much!! LOL! Her speech is not as clear as Lil' Chris' was at this age. She has problems with her "R's" and "L's" so we are working on it. Her pediatrician says it's normal at this age and she will get better when she starts school probably. For now we just keep correcting her and it is soooo funny watching her stick her tongue way out for the "L's." :) I can't help but laugh sometimes, it's so cute:)

She can spell her name and pick out the letters, but she can't write them. She's a little stubborn when it comes to writing, but I remember Lil' Chris was too at this age. We'll have to practice lots before she goes to preschool, possibly this Fall. Ever since we got the iPad, she's been learning her letters and numbers more and more. She works that thing better than me!! She goes from one game to the next game, and she can look at pictures and blow them up...I wonder what the future of these kids will look like with learning all this technology at such a young age?!? :)

She is very particular about things being in their right spots. She will usually correct what Lil' Chris does if it is wrong. For example, if he takes his jacket off and just throws it on the floor, she will come and pick it up and put it on the chair where we usually put their coats all the while saying "Chris! It goes over here!!" She's kinda motherly to him in some ways, even when it comes to him doing his Vest or taking his pills. She will remind him if I tell him to do something and he doesn't do it right away:)

She still sucks her pointer finger on her right hand when she sleeps. Not sure how I'm going to stop her from doing this. Her teeth are really starting to stick out b/c of it though, so we'll have to start doing something really soon.

Lastly, she can be VERY stubborn when she wants to(I have the video's to prove it;) LOL!! But overall, she is a pretty darn good kid! She listens very well and if she doesn't, she does what I tell her usually by the time I count to 3, b/c she knows she will get a spanking if she doesn't. She rarely has to sit in time out, but when she does, she sits very well until I make her apologize for usually hurting her big brother and then gives him a kiss and a hug....I make them do that part more for ME than for them, b/c it just too cute;-) LOL

Today I came across Lil' Chris' 3rd birthday video that apparently I never got around to editing and posting, sorry about that;) Better late than never, right??? Sorry it's not edited completely:) Check out the video below...I can't believe how little Ayla was!! Her hair was soooo short and she wasn't even talking!! Lil' Chris looks so different with longer hair too:) He now gets buzzed by Mommy just like Daddy does...his first buzz cut by me was last month;-) I think I like him in shorter hair, it looks cute:) You'll see in the video that he doesn't get a break from treatments on his birthday...his day STARTED with the Vest and ENDED with the Vest with no complaints! He such a good kid:)

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I hope you enjoyed the pics and videos,
M

HAPPY 4th BIRTHDAY, LIL' CHRIS!!!!!

I've got soooo many things to share on the blog right now, but no time....today is all about my lil' boy:) 4 years ago today I went into labor and gave birth to my first and only son, Lil' Chris! What joy he has brought into our lives!!!

HAPPY 4TH BIRTHDAY

LIL' CHRIS!!!!!

WE LOVE YOU!!!!

LOVE,

MOMMY, DADDY, & AYLA:)

We took Lil' Chris to Disney for his birthday a week ago(I'll share more pics and video's soon, sorry I haven't had time), but today is his actual birthday!! So we are taking him to Cedar Point to celebrate the day:) YEA!! Cedar Point is a HUGE amusement park and tons of fun!!!

When we were at Disney, it was Goofy's birthday too:)...

This next pic made the whole trip worth it! All the money, the long drive, the heat...everything! It's like his expression is saying...

"Wow, I can't believe I'm meeting Mickey Mouse!!!!!!!!!"

4 Year Annual CF Clinic Visit

Lil' Chris had his 3 hour 4 year annual CF clinic visit today and it went GREAT!!!! His weight was 38.6 up from 37.3 and his height was 42 inches up from 40 3/4 and his BMI was 47% down from 50%. They didn't seemed to worried about it only being 47%. They usually want CFers to be above 50%. They said he had a growth spurt!! I'm just glad he can go on the 42 inch rides at Disney now:) LOL

All 8 different nurses/dr's that we saw today said to "keep up the good work and that he is doing GREAT!!!" Gotta LOVE hearing that:) They made no changes to any of his meds since he is doing so well. YEA!! They did take a throat culture test, so now it's just the waiting game;( Why must they torture us so long?!?! Please pray it comes back "normal." I'll let you know when I find out.

A few tips that we took away from todays visit:

1. It's common for CFers to get thirsty when doing the Vest. If you put your hand in front of their mouth, you can feel the air being forced out, so all that air may make them thirsty.

2. You can get a letter from your CF clinic for places like Disney to get in front of the lines or in the Fast Pass line for free so that they don't dehydrate waiting in the long lines in the heat. We got our letter today!! YEA!! I think it's for up to 6 people too:) Thanks Chrisy To Jobe for mentioning that one to me;)

3. New high calorie drink to try, see pic above. He drank 1/4 of one there, but we'll see if he will drink it at home.

4. To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $775!!! WooHoo!! You get $50 just for joining and $25 every 6 months!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!! Thanks:)

5. Also, there is anther open CF survey right now so call 1-888-798-1889 extension 255 to do a 60 minute CF study and you'll receive $125!! This study is for you or your CF child that is between 6 and 17 and is currently on Tobi. The ladies name is Chris and she said to call even if you don't qualify b/c they may have another CF study for you!

Thanks and I'll let you know if I come across any other legit CF studies or surveys.

Well, I've got a TON of things to do, so I'll write more when I have time:) Thanks for the 28,000 hits!!

M

DISNEY!!! YEA!!!

Well, it's official!!! WE ARE GOING TO DISNEY!!!!! YEA!!!!!!! I just booked it!! :)

It may hurt us in the long run since we can't really afford it right now, but it's something I've ALWAYS wanted to take Lil' Chris to. Ever since he was diagnosed, I've wanted to take him to Disney. I never got to enjoy it as a kid, but I DID get to enjoy it as an adult numerous times now (starting with our Honeymoon;-)
With Cystic Fibrosis, you just never know when it may turn for the worse. Even though Lil' Chris is so "healthy" right now, it could all change in a blink of an eye. I've seen other CF kids doing just fine and then they catch a bad bacteria in their lungs and within 6 months to 1 year they are gone. I always thought to myself...if that were to ever happen to Lil' Chris before I got to take him to Disney, I would NEVER forgive myself. Well, now I don't have to worry anymore...well, not about Disney that is;) He is healthy and doing well, and we are going to enjoy watching every second of his excited face on every aspect of our Disney trip:) I can't wait!!! I LOVE to see his beautiful, excited smile:) It's going to be a BLAST!! Ayla is going to love it too!!

If CF has taught us anything, it's that life is too short! Why wait? Take advantage of the time you have together, b/c you never know what tomorrow brings.

Here is a pic of Lil' Chris and Chris looking at the pics of our Disney Resort. (He DID have a very excited face right BEFORE I took this pic...oh well LOL:) We are staying 6 nights at the Pop Century Resort with the Quick-Service Dining Plan, Park Hopper Plus, and Waterpark!! Pop Century has THREE pools, one in the shape of a bowling pin...Lil' Chris LOVES bowling:) AND...it has HUGE cell phones at each end of one of the complexes!! We all know Lil' Chris AND Daddy LOOOOOVE cell phones;-) LOL! Ayla and Mommy love them too;-) Hee hee :) They both LOVE rides too. Neither one ever says "No" to a ride, so this vacation is going to be SOOOOO MUCH FUN!!!

Less than 2 weeks before our CF walk on May 14th, so if you haven't signed up to walk or donate yet....click here:)

Thanks, and pray we have beautiful weather for our walk and our Disney trip:)

M

Update / Cancelled Vacation=Skiing and Kalahari!!

We were supposed to go on vacation to NJ this past weekend, but we ended up not going b/c of the snow;( I was so sad not to be able to hold my new lil' "nephew" Cameron:'(

Since Chris and I both took off work already, we decided not to waste it, so .....

Friday: We took the kids sledding outside:) They had a BLAST!! Ayla and I made snow angels;) Opa fell in love with our snow blower and did our driveway, Thanks Opa;-) LOL!

Saturday: Chris and I went skiing at Snow Trails. It was SOOOOO much fun!!! I haven't been skiing since before the kids were born, I think! I missed it sooooo much! I felt free as a bird coming down those slopes!! Thanks Oma and Opa for watching the kiddos:) It's been a while since Chris and I got to go on a date like that all day:)

Sunday thru Monday: We took the kids and Oma and Opa to Kalahari (the world's largest indoor waterpark). We all had SOOOOOO much fun!! There is so much to do there for every age!! I wish we had time to do it all!! It was kinda busy on Sunday AND Monday!! Was there no school this Monday or something??? We still had fun:) Lil' Chris went on his first BIG slide with us!! It was a 4 seater raft ride and it was an enclosed tube ride too, so it was very dark and scary...but he did GREAT!! He had a BIG smile on his face at the end:) Chris and I really enjoyed the indoor/outdoor hot tub:) It felt sooooo good, esp on my back when I sat in front of a jet! It was kinda neat sitting outside in a hot tub in my bathingsuit while it was snowing on my head;-) LOL! We can't wait to go back again!! We've decided that if anyone ever wants to get any one of us a gift for whatever occasion.....you can always get us a gift certificate to Kalahari;-) LOL!!! Seriously!! :)

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Monday night: When we got home from Kalahari, we had just enough time to eat dinner and then go to my husbands indoor soccer game:) The kids had a blast watching him score a goal!! YEA!! They even got to go out onto the field at half time for the first time ever!! I have a feeling it won't be the last time!! Afterall, both their parents played soccer both indoor and outdoor most of their lives:)

As for an update on the kiddos...Lil' Chris is all done his Augmentin and is not complaining of any earaches and that little cough is all gone. YEA!! Ayla is still on her Augmentin. She didn't like the taste the first few days, but has gotten much better lately in taking the medicine. Her earache and little cough is gone too. YEA!! I'm still finishing up my Augmentin. I missed a couple of doses, so shame on me!! At least I remembered every time for the kids!! As you can see...my life revolves around them, not myself;-) LOL!!

Although, I did do something for myself and went to a chiropractor for my back since the massage the other day didn't work. They cracked me here and there and gave me an ice pack and directions to stretch it and ice it. The stretching and icing really does seem to help (esp after the first day at Kalahari...the wave pool really hurt;-) LOL! Oh yeah.....they also want to see me 3x a week for the next 2 weeks, then 2x a week the next 5 weeks, and then 1x a week for the next 5 weeks!! Ummmmm....I don't think so!! My insurance covers up to 20 visits, but my co-pay is $25 EACH time!! I may go a couple more times just so I can sit and get up out of a chair and bend over and not look like I'm 9 months pregnant! LOL! You can actually see me trying to bend over and pick Ayla up at the bottom of the slide in the video...it hurt so bad bending like that!

I actually have an appt with the chiropractor today at 4 and then a Great Strides meeting at 5:30. One of the other CF moms, Mary, is not able to help in the planning this year. We'll miss you Mary! So since my MIL lives here now, she has offered to help out with the walk!! YEA!Hopefully we can work together and raise LOTS of money for a CURE for Cystic Fibrosis!! You can get an early start and donate today, just click my Great Strides button under my header pic on the right hand side, and then "click to donate!!"

Have a GREAT week!!
M