Ayla's Firsts;-) Too Cute!!

Yesterday was a BIG day for Ayla!! She starting sitting up all by herself!! Then I noticed her tooth finally broke through!! Then today she starting holding her own bottle!! When did she turn into such a young lady?!?

Photo and video editing at www.OneTrueMedia.com

M
PS. Special Vest pics and video to come and more vaca pics;-)

Day 1 of our Summer '09 Vaca Pics

Here are our Summer vacation pics finally! Well, actually this is only day 1. I told you I took a TON of pics!!! ;-)

On this day, we hopped back and forth between the water park, my sister-in-laws house, and my in-laws pop-up camper. Don't worry...we kept Lil' Chris far away from any camp fires;-)

Make an on-line slideshow at www.OneTrueMedia.com

M
PS. Coming Soon....Day 2 of vaca pics and some special vest pics;-)

R.I.P. Richard. You will truly be missed ;(

Richard, the oldest male CFer I knew, went to be with the Lord very early this morning leaving behind his beautiful wife, Kori, and their 2 sons. He not only had CF, but he also had Colon Cancer. I admired him for all his strength for all that he had to deal with throughout his whole life. I met him through this blog probably about a year or so ago. He was a true inspiration to me. He showed me that Lil' Chris CAN and WILL live past the CF average life expectancy of 37, just like him!

Although I am glad that he can finally breathe easy with no pain...I am sad that he is gone. He will truly be missed not only by me, but by many friends, family, and also his CF family(us fellow CF bloggers).

Rest in peace, Richard. We love you and miss you!
M
PS. Please pray for Kori and their 2 boys to get through this rough time.

Pediatrician Visit

Today Lil' Chris and Ayla had their well visits at the pediatricians. It went great! She said they are both doing great and that Lil' Chris is doing really well for having CF!


His measurements have always been a little different at the pediatricians than at the CF clinic. Here they said that his weight was almost 28 lbs, where the clinic said 30 lbs. They said his height is 37 inches where the clinic said 35, so who's right??? IDK!

She wants to see Lil' Chris eating more macaroni type foods instead of baby food. So would I, but he refuses to eat any mac n cheese or any type of macaroni unfortunately. So she suggested he see a speech therapist to help him to eat more of this type of food. I told her that we can get a free nutritionist through BCMH(his secondary insurance), so that is what we are going to do. I'll let you know how it goes.

While we were in the room and she was putting all his info in her computer, I told Lil' Chris "Don't touch" and she laughed and said "That's funny telling a 2 year old not to touch!" I said "He actually listens pretty good! He'll stop touching or doing whatever when we tell him to usually." I don't think she really believed me, but he is really a good kid. We are VERY blessed to have such a GREAT kid!!

She was very proud of Lil' Chris for learning to ask to go on the potty so quickly! She thinks he is ready for a toddler bed :0 He may be ready, but I'm not so sure mommy and daddy are ready for that yet ;-0 We'll see.

He has been doing so great with potty training! Today he had one accident, but it was basically all my fault though. I was giving Ayla a bottle and he was trying to tell me he had to go, but I thought he was just trying to get my attention since I had just tried him on the potty right before I started feeding her. Sorry kiddo...mommy's fault ;(

Ayla weighs 17 lbs and 10 oz. and she is over 26 inches long!! She is getting sooooo big soooooo fast ;( I can't believe she is 7 months old already!! She has 2 teeth on the bottom coming in already! You can't feel them, but you can see them...they are so cute;-) She can now start to eat baby veggies and start drinking water or juice in a sippy cup. I can't believe she is ready for all this already! Time flies!

Ayla had to get 3 shots unfortunately :( Then she got to drink that special juice. It must have tasted weird, b/c she kept sticking her tongue out afterwards. It was cute. Lil' Chris just had to get his finger pricked for a lead test. He was NOT happy about it! He got a band aide on it afterwards and you would think he broke his finger or something! He wouldn't use that hand for the longest time! He just kept holding that hand up in the air. It was so funny seeing him try to play at the park with only one hand :-) LOL

Sorry there are no pics. They were really quick today thankfully! AND Lil' Chris got to wait in the waiting room since it was empty, so that was nice;-)
M
PS. Pics coming soon:)

3 Days With NO Potty Accidents!!!!

Lil' Chris has now gone 3 WHOLE DAYS WITHOUT ANY POTTY ACCIDENTS!!! YEA!!! I can't believe how once it clicks, it sticks;-) LOL!!

It's soooooo nice only using ONE pair of undies a day compared to the 10 or more the first few days;-)

Guess what?? He even went potty on the big boy potty today(the real toilet that is;-) I was soooo proud of him!!! AND he even went #2 on the big boy potty tonight!! YEA!!! Mommy was very happy b/c there was no clean up;-) LOL

You're never gonna guess what else he did today.....he took a nap with his undies on for the first time and he didn't even have any accidents!!!!! I was shocked!! What a BIG boy he is becoming:)

Today was his first day with the babysitter after being potty trained. He did GREAT!! He didn't go for her, but he didn't have any accidents either. I think he was waiting for us to get home. Luckily I was home by 12:45;-) Like I said before, sometimes he doesn't even go until after nap time anyways.

We also went outside today and he didn't have any accidents! We were out there for awhile too! He was helping me pull weeds. He was such a big helper too!! When did he grow up so quick?

Things we still need to work on....
1. Continue potty training at nap time
2. Start potty training at night time
3. Start potty training for when we go out to places.....I DREAD this one! Public restrooms are SOOOO GROSS!!! All I can think about is all the germs :( But I need to get past it and just do it, otherwise he will be 30 years old and still wearing diapers when we go out....that would be funny;-) LOL

Tomorrow both the kids have dr.'s appointments with the pediatrician. I think they both get shots unfortunately:( I'll let you know how it goes.
M

No Potty Accidents ALL Day!!!!

I can't believe it...Lil' Chris didn't have one potty accident ALL day today!! He even ASKED to go potty twice!! Surprisingly he asked to go potty during his 30 minute Vest treatment! Not bad for only a week and a half:) I guess now it's time to start potty training him at nap time and bed time....this is the part I think I'm going to dread the MOST! I hate changing his crib sheet! I think he is ready for it though and it might not be as bad as I think. We started putting Pull-Ups on him at nap time and when we go to get him, it is on the floor along with his shorts. I guess he thinks they are like his undies...if he pees in them, they are dirty and need changed. He hasn't taken off the diapers at night time yet.

These last couple of weeks while we were potty training him, we haven't needed a babysitter so it will be interesting to see if he will tell the babysitter on Monday if he has to go potty or not. We are going to need sitters a lot more now that my hubby is starting his new job on Monday(that's another story). Hopefully all goes well and he continues to go on the potty;)
M

CF Update from Clinic Appt.

YEA!!! HE GAINED 2 WHOLE LBS in 1½ MONTHS!!!

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Yesterday we had a clinic appointment and it went GREAT!! We needed a good visit after our last one where his weight was down. This time he gained 2 whole lbs in only 1½ months!!! I couldn't believe it!!

His weight this time was 30 lbs!! Up 2 lbs, and his percentile was 61!! YEA!!! His height was 35 inches and his percentile was in the 50's. His BMI was like 43 last time and this time it was...... drum roll please..... 66%!!!! YEA!!! I think I was excited more than the dr. and he was pretty excited too;-) I guess it was well worth the almost $500 that we spent on all the high calorie food for him to try the last month and a half. His cute chubby cheek smile is worth ALL the money in the world;-)

His lungs still sound great and since he is doing so well, the dr. didn't change anything! Yea! His next appointment is in 3 months on Nov. 18th.

He did not get a throat culture this time, so Lil' Chris was happy about that. I think he is starting to realize that when we go to the clinic, they seem to always shove something down his throat and he HATES that. That's probably why when the dr. comes in the room now, he starts to freak out and doesn't want him to touch him. So maybe our next appointment will go better since they didn't give him a throat culture this time;) Hopefully anyways.

Ok, so all of that was in the morning and he was acting fine. Now onto his afternoon and night...he kept moaning and groaning and kept pointing to his belly saying "hurts". I thought maybe he was just constipated from all this confusion with the potty training, but it turns out he had an upset stomach:( He threw up about 3 or 4 times in 2 hours. Poor kid just clung to us and wouldn't let us out of his sight. He didn't have a fever or anything, so my guess is that he must have had something with soy protein in it. We've been trying to figure out what it was. The only thing that we can come up with is the Pro Cal pack that the dietitian gave us to add calories to his food. The packs didn't have any ingredients on it and she didn't give us the box. He only ate a little bit in some mashed potatoes the night before. The dietitian is ordering us all flavors of scandishakes, orange Resource Breeze juices, and some more of this Pro Cal. I guess when we get the box, we will find out if it has any soy protein in it. If so, we may have to give it away, b/c they don't take anything back.

BTW, he was all better by the time he woke up this morning;-)

I forgot to tell you the great news! We got approved for another year of BCMH(secondary health insurance for Lil' Chris). YEA!! BCMH used to pay for his formula and now they are providing his supplements too:) YEA!! Thank you Lord!

M

PS. My bottom front tooth broke today:( Luckily it was the back side of it that came off so you can't even tell. I'm sure if I don't get it fixed soon that the front of it will chip off too now that it is so thin:( Just my luck! Oh well.

Day 7 of Potty Training/Clinic Tomorrow/Ayla Pics

I can't believe it! Lil' Chris went #2 on the potty today!! I think I was more excited then him!

We were thinking of giving up b/c it seemed like he was not getting it. Maybe he is now! Hopefully:) Although he did pee all over the couch today:( We have decided to continue until the 24th. That's when we will be needing a babysitter more, b/c my hubby starts his new job then. I feel bad having the babysitter clean up pee and poo. If he is doing much better with it at that point then we will continue with it, but if he still is not getting it then we may hold off until he starts showing some signs that he is ready. We started this whole potty training without him really even showing any interest, so maybe that is why we are having such a hard time:( Although it has only been one week!

Tomorrow we have a CF clinic appointment. I really really really hope his weight is back up. He is not sick this time and he has been eating much better, so hopefully we'll get good news. I really hope that he stands on the scale by himself this time too. Last time he refused. I think it scared him b/c it was his first time on the big scale. My hubby had to hold him on it and then they subtracted his weight to find out what Lil' Chris weighed. Not the best method I think. That's probably another reason why his weight was so bad last time. We've been practicing standing on our scale at home, so hopefully he'll do it this time all by himself:)

Our dietitian brought us some more supplement samples to try this weekend. We tried the Scandishake in Vanilla, b/c that was all she had but it comes in chocolate and strawberry too. The first time he drank about 6 oz.!!! I was SO excited! I thought that maybe we found something that he likes and scandishakes are awesome b/c they are 600 calories for just 8 oz.! But today when I tried it for the second time, he only drank maybe 2 oz. and then kept pushing it away:( Then I tried the Resource Boost Breeze juice box that she gave us. Yeah, he definitely didn't like that one. He only took 1 or 2 sips. I think he just doesn't like that flavor that she gave us, it was Wild Berry. I think he might take to the Orange better. I'm going to try to get some different samples to try tomorrow if they have any. I'd hate to order a week or months worth and him not drink any of it. She also gave us Pro Cal packs. They are packets of powder that you can add to certain foods like mashed potatoes or pudding and it just adds extra calories, but doesn't change the taste of the food. We are going to try that tonight to see if he'll take it.

I'll update you tomorrow on how our clinic appointment goes.

Ayla has had some first this week:) We finally dug out Lil' Chris' old exersaucer for her to play with:) She LOVED it!! She was checking out everything! Today she sat in Lil' Chris' high chair for the first time! I couldn't believe how she sat like such a big girl! I usually feed her in her bouncy seat, but I guess we don't need that anymore:) Speaking of feeding....it finally clicked for her! She doesn't spit her rice cereal out at me anymore! YEA!! She eats it right down now and so quick too;-) She is close to sitting up on her own now too, I think. Pretty soon:)

This is my favorite bib that Nancy made for her. It's a cute lil' bear with roses above it's head and it says "Ayla" underneath. So cute! She also has a burp cloth to match it:) If you want the BEST bibs EVER too, visit http://giftsbynancy.blogspot.com/

So tell me....when did my baby grow up??????? It's not fair, can't they stay little forever??? ;(

M

Day 3 Potty Training

Yesterday's potty training didn't go as great as day 2. He didn't go in the potty at all! Somehow he doesn't need to pee from the time he wakes up until the time he goes down for a nap. For nap and bedtime, we put him in a pull-ups. So after he woke up from his nap I had to go to work, but he only had 3 accidents my hubby told me. Not bad!

I'll let you know how Day 4 (today) goes later tonight:) But I can tell you that so far he HAS gone on the potty at least once;-)
M

Day 2 of Potty Training

Well day 2 didn't go nearly as bad as day 1 thankfully! Today he went THREE times on the potty!!!! I couldn't believe it! After yesterday I thought he was never going to get the gist of it! Today I tried something a little different which seemed to work pretty good;-) Thanks everybody for all your advice and keep 'em comin;-)

He had 5 accidents today (that I can count from all his dirty undies;-) I think at one point I just let him run around with no undies, so there could have been more accidents;-) LOL I figured...he's just going to dirty them, so why not?!!! Plus, he had an accident b/c he couldn't get his undies down fast enough. We need to work on that a little bit more;)

Anyway, I feel like we are getting somewhere, b/c when he was having his last accident, he looked up at me and said "Uh oh" with a worried look on his cute lil' face:) I couldn't help but smile and laugh...even though that was his biggest accident of the day and it was on my hardwood kitchen floors! I was just glad that he was finally starting to realize that he was supposed to pee in the potty and not his undies. YEA a breakthrough!!!

Hopefully tomorrow will go even better;-)
M

Swine Flu Strikes a CFer

THE CYSTIC FIBROSIS Association is concerned that, following the death of 18-year-old Darina Calpin with CF, those suffering with lung disease could be at greater risk from swine flu. Click here to read the article about it. Some very interesting stuff that CFers should be aware of if they aren't already.
Please keep this family in your prayers.

Also please keep Richard, Kori, and their boys in your prayers. Richard is in the hospital and just found out that his cancer has spread. He amazes me everyday. He is 47 or 48 I think, and has cancer AND Cystic Fibrosis. I don't know how he does it. My prayers are with them.
M

Day 1 of Potty Training!

Guess what we started today??? We started potty training Lil' Chris!! So far it's not going so well. He had 7 accidents today and didn't go on the potty ONCE!! Hopefully tomorrow goes much better. I'll keep you updated:) If anybody has any good advice, I'd love to hear it! =)

Ayla is getting SO big!! She unfortunately likes to spit her rice cereal all over me though:( But I can't stop laughing, b/c it's so cute:) Did I tell you that she is rolling over front to back and back to front now? She has been for a few weeks now. She is even starting to craw a little bit to get to her toys;-) It won't be long now;-0

For now, check out this cool CF fundraiser...

Must See Research Video!

Thanks Angela for bringing this to my attention:



Isn't this video above awesome?! I can't wait to hear the results at the end of this year! I'll let you know if I hear anything:) Let's pray that this leads us to a CURE!!!
M

CF Study and CF Article

I have SOOOOO much I want to blog about, but no time to do it:( Too much to do! Can anybody clone me? =) LOL

Anyways, click here for another great article about how we are getting closer and closer to a CURE for Cystic Fibrosis!!! Gotta love science and researchers!!! =)

If you would like to be a part of finding that CURE, just click here and make a donation today;)

A few days ago I helped by doing a CF study on-line. It was for 3 days, not all day long or anything. I could get on whenever I wanted. All I had to do was answer some questions and then respond to others answers if I wanted to. There were only about 12-18 questions each day. Most of the questions regarded finances and insurance for CF. There were probably about 20 other CF moms doing the study. It was really neat to compare answers and see how different it is for everyone in all the different states.

It seemed as though insurance is different for everyone, shocker there;-) Some cover WAY more than others. I feel bad for those who sometimes have to skip taking their meds, b/c they don't have the money to order more. That was what surprised me the most!

Another main topic was... what are some expenses for CFers? We pretty much all said FOOD!!! So you know, we didn't see each others answers before we answered the questions. I don't even think the moderator was looking for that type of answer, but we all gave it. The high calorie food that we have to buy can get very expensive. For us right now, we spend about $130 every 2 weeks just for Lil' Chris in high calorie foods!!! It is mainly b/c we have to experiment with lots of different foods to see what he'll eat and what he won't eat. I think we spend about $20 on ourselves, and then we just eat what Lil' Chris refuses to eat. Which is probably the reason why I haven't been losing much weight lately...too much high calorie foods;( Good for Lil' Chris....BAD for Mommy and Daddy:( I hate to waste food though, and money. Good thing I've been running my 5 minutes everyday to burn off those extra calories that my body isn't used to;-)

They asked other questions like what meds, what treatments, basically what all do you have to do or not do extra b/c of CF? One thing that I mentioned was that CF is a part of every second of our lives. When we go out shopping, when we go on vacation...we have to dodge every person who coughs or sneezes or blows their nose. We sometimes have to wait in the car for 5 or 10 minutes before going into a store, b/c someone is standing right by the doors smoking. We have to wait for them to finish and then wait for the air to clear before getting out of the car. It stinks, but it is just something that we do without thinking b/c we love Lil' Chris and want to protect his lungs.

Anyways, a bunch of other CF moms agreed with me. Some said they agreed 100%, others said they agree 120%! So I guess we are not the only ones that play the dodge game;-) lol

To sum up the study, it was very interesting, a lot of fun, and I learned a lot and I hope others learned something from me;) I can't wait to do another CF study to get us one step closer to a CURE!!
M

Getting Closer to a CURE/Update/Vest Pics

Lil' Chris is still doing GREAT!! His daddy on the other hand...not so great:( He may have gotten what Lil' Chris had a couple of weeks ago...fever and all:( I never did get the results from Lil' Chris tests, so still not sure what it was that he had. I've tried to call the dr.'s a couple of times, but it has always been at the wrong time. I'll try again Monday. Please pray that Ayla and I don't catch it too...also that Lil' Chris doesn't catch it AGAIN!

We had a busy summer! 3 very long car rides! 2 to NJ and one this past weekend to Maine! We had a BLAST each time! Good thing our kids are like us and don't mind long car rides;-) Our trip to Maine took 17 hours in the pouring rain to get there and 15 hours on the way back! It was long, but the kids did GREAT!! Thanks mom for the DVD player for the car! They helped A LOT!! Not sure how we got along without it before;-) Thanks to all our Maine relatives that put up with us, we had a lot of fun!! The pictures are uploading now, so they will be coming soon;-) Here are some pics of Lil' Chris helping me pack up his Vest for the trip:) He liked sitting in it before I put the Vest machine in:) Then he tried to pick it up when it was all ready to go! It weighs more than he does, but it was cute watching him try to pick it up;-) He's such a BIG helper!!

Photo and video editing at www.OneTrueMedia.com

I got this GREAT email about a promising drug that I've talked about before. Well, we are getting closer and closer to getting it approved by the FDA!! This could be HUGE for CFers!! Here is the email I got and you can read more about it by clicking on the links highlighted in red....

Dear Lil' Chris' Mom,

We’ve reached an exciting milestone in the search for a cure.
One of our most promising potential therapies, VX-770, is moving forward in clinical trials.

This compound has the potential to be one of the first drugs ever to treat the basic genetic defect in cystic fibrosis.
VX-770 (developed by Vertex Pharmaceuticals) is already being tested in adults. This week, for the first time, Vertex initiated a clinical trial in patients aged 6 to 11. Once the studies are complete, the FDA will determine if VX-770 is safe, effective and acceptable for approval.

To find out more about VX-770, read the full story and our FAQs. You can also read a very exciting article in today's Xconomy, quoting CF researcher Bonnie Ramsey and highlighting the work of the Cystic Fibrosis Foundation.

This milestone would not be possible without your support, and we need your help – now more than ever – to make this drug a reality.

If you have CF, you can help by participating in the clinical trial. Learn more by calling the Vertex clinical trials hotline at (877) 634-8789.

You can also help support this and other lifesaving research by making a donation today.

Together we can make CF stand for "cure found."
Thank you for your support,

Robert J. Beall, Ph.D.
President and CEO
Cystic Fibrosis Foundation
800-FIGHT-CF
info@cff.org
www.cff.org

Isn't that awesome?!? Thank you EVERYONE who has donated to help find a CURE!! Your money is being put to good use! We are getting closer and closer to a CURE!

If you haven't donated yet and would like to, click here to help us get to a CURE! My personal goal is to raise $5,000 by the end of August. So far we are at $3,907.63!!! Please tell your family and friends and pass the word along to donate to help find a CURE for ALL CFers!! I think today I will send out my last email reminders for this year about donating. I encourage all CF bloggers to send their reminders one last time too. PLEASE, PLEASE, PLEASE DONATE TODAY!!

TOGETHER WE CAN MAKE CF STAND FOR CURE FOUND!!!!!!!!
Thanks,
M