New Enzymes 1/29/15

Sorry it's been so long since my last post, but....NO NEWS IS GOOD NEWS, right??? :)

One of my last posts said that Chris hadn't gained any weight, well...at his next clinic apt, he ended up gaining like 2 or 3 pounds!! We were soooooo thrilled!!! Since then, he hasn't gained as much, but little bits each apt, so there was no increase in enzymes. However, his cf dr told us to use up what enzymes he had, then she would prescribe a stronger one. I guess she could see what was to come. He has been taking about 7-8 of the blue and red pill above with every meal and snack. He actually swallows them all at once too!! Not bad for a 7 year old, right??

A sign that his enzymes aren't working are poor weight gain and/or greasy/oily stool. For those who don't know...those with Cystic Fibrosis need to take special Enzymes(pills above) with everything they eat, b/c their body doesn't digest the food properly. Therefore, if they didn't take the enzymes, the food would basically just run right through them and their health would decline very fast. Good weight gain helps the lungs too, which is another big factor when it comes to Cystic Fibrosis. So his CF dr keeps a close eye on how well his enzymes are working.

At one of his cf apts, the dr prescribed a stronger enzyme(the red and clear one above). It's a lot bigger than his old ones, which he has used from birth. He started taking them on 1/29/15, his sister Ayla's 6th birthday:) He was getting REALLY greasy/oily stools and he was at his max amount that he could take with his old pills, you can only take 8. Therefore, we started him on the new bigger ones. He made the decision himself! He wasn't too sure about taking the bigger pills, so I wanted him to decide. After about the 3rd or 4th bad greasy/oily stool in just a few days, he said to me, "Mom, I think I need to start the new pills now." I asked him if he thought they would help, and he said yes. So, he started the new bigger ones, and has not had a greasy/oily stool since!! I'm so happy he sees what the pills can and can't do now! I'm trying to build the foundation for his future. I've seen a lot of CF kids refuse to take enzymes once they hit a certain age, b/c they may be embarrassed or something. Well, now he kinda sees what will happen if he doesn't take them. Actually it would be a lot worse if he doesn't take anything at all, but.....we will cross that bridge when/if we ever get there.

So, he swallows 2 at the same time of the bigger enzymes with every meal and snack now!! He does it like it's nothing!! I'm so proud of him! He's my champ:)

As for a general CF update, he has been culturing something the last few times, but nothing to worry about at this time. He had two 24 hour bugs this winter, but no coughs or bad colds or anything. I don't think he was on any antibiotics this past year!! That's amazing for a CFer!! The Pulmozyme really does help him!! Now they are coming out with a new way of administering Pulmozyme! It will only take 2-3 minutes, rather than 10 minutes!! Plus, it's an on-the-go type, so he won't have to be sitting next to his nebulizer machine!! YEA!!!

Overall, he has been doing GREAT!!! We all had a BLAST on his Make A Wish trip to Disney Land this past July!! We are so grateful to the Make A Wish Foundation!! See my last post of all the pics we took:) I plan on giving back someday...maybe be a volunteer:)

I'll try to update more if I can. It's been hard since I got promoted at work. I used to work 36 hours, now I work around 50 hours a week. Plus, I have already started planning for this years Great Strides Walk for CF!! Save the date, it's on Sunday May 3rd 2015!!! Can't wait!!!

Have a GREAT day!!
M

CF Clinic Visit / Pulmozyme / 3rd PFT

Lil Chris had his first quarterly visit of the year with the CF clinic today at 4 1/2 years old. His weight went up from 40 lbs to 41.2 lbs, 60th percentile. YEA!! His height was up from 42 inches to 44.5 inches, 90th percentile!! His BMI on the other hand went from 30th to 20th percentile. BOOOOO. His doctor asked me if we have a lot of tall people in our family. LOL! She said that his BMI is so low b/c he is getting very tall quickly. She didn't seemed too worried about it even though they like CFers to be above the 50th percentile.

I told her how he has been eating a few more things since last time....jelly sandwiches, and cheese & mayo sandwiches, and I told her how he likes chicken nuggets and he even ate 10 one day for lunch!!!

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She said that his lungs sounded clear and everything looked good and we wouldn't change any meds. I asked her if he should stop the Bactrim in a couple of days when it is done, or if he will need more? I told her he isn't coughing much, but when he does cough, it is a little wet sounding still. She said to stop it when its done. He didn't cough the whole time we were there until right at the end. She heard that little wet sound and said lets do a PFT test and then she would come back and make a plan of attack. She said she would like him to not have any cough at all and he shouldn't have a chronic cough yet.

He did great on his PFTs, but they were a little bit lower than last time. The girl said it was probably b/c he is just getting over a cough. Last time his FVC was 94 and his FEV1 was 94...this time it was 89 and 96. One went down and one went up.

FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired.

FEV1 - Forced Expiratory Volume in One Second - this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory manuever.

When we came back in our room, I thought we were going to get to talk with our dr about a plan of attack, but we'll call her "nurse P", the nurse was there waiting for us with a bag. My first thought was OH NO!! She said that our dr thinks we should start Pulmozyne daily before his vest in the morning(I think Nurse P had some influence on this decision). This is a mucus thinner. It will help thin his mucus so that he can cough it up easier and spit it out. This "may" get rid of his cough, but it also may not be right for him. We would have to try it and see. It is about a 10 min neb, so we would have to get a nebulizer machine. This would be his first nebulizer medicine!! It's supposed to be done before his vest, but he can do it during his vest she said if we are running late.

Nurse P suggested in the beginning of our visit that he should do his Albuterol and Acapella every day instead of only when he has a cough. That he should get used to doing it now while he is young, since he will have to do it every day when he is older. If you look at past posts, you'll see that Nurse P is the one and only nurse that has always said he should be on a neb. I'm sorry, but if our dr's never thought he needed it then.....

So I was trying to ask her some questions about this Pulmozyme and she was telling me about it and how it will have to be sterilized each day and everything....but she wasn't exactly saying how long he would have to do this Pulmozyme. I kinda knew deep down from knowing so many CFers, but then she said that this would be "FOR THE REST OF HIS LIFE!!"

Just hearing those words again was a shot through the heart. We first heard them on the day of his diagnosis..."he will have Cystic Fibrosis FOR THE REST OF HIS LIFE"...."he will do his Vest FOR THE REST OF HIS LIFE"....and now "he will do this Pulmozyme, Albuterol, and Acapella FOR THE REST OF HIS LIFE???"

So today's clinic visit was a little frustrating for many reasons to say the least...

1. When we got there, we had to wait in line....yes, I said wait in line with other CFers....just to check in. 3 or 4 other kids like Lil' Chris, all wearing masks and within a few feet from each other!!! I was FREAKING OUT inside!! I let the girl know when it was finally our turn!! She said something about it being busy, and I said "Yeah, it's making me VERY nervous all of these CFers so close!" She got the hint and moved us along quickly.
2. Nurse P suggested doing Albuterol and the Acapella EVERY DAY....sorry, but I'd rather a dr tell me something like that!
3. The dr said she was coming back in our room after PFT's and she never did!
4. The nurse has to tell me that he will have to do this nebulizer FOR THE REST OF HIS LIFE!! Again....I'd rather hear something like that from a DOCTOR!!! Just makes me mad!!
   

I don't mind doing this neb if it's really going to help him, but if he doesn't really need it, then I'd rather not start him on it until he needs it.We do have to worry about him becoming immune to certain meds, as he may need them more when he is older.

Some CF Questions...

1. Can Pulmozyme be used just for coughs or does it have to be used long term?
2. Is it something that he would have to be weaned off of once his cough goes away?
3. Can he become immune to Pulmozyme after a while? It seems like just about every CFer I know, young & old, do Pulmozyme every day. I need to do some research!
   

So, I was told to go home and talk it over with my husband and decide whether we want to go ahead and do it every day for the rest of his life, try it for 30 days, or not try it at all. It's up to us. GREAT!!! I talked to my husband and he said he doesn't think he needs it yet and to just wait and see how he is when his Bactrim is done. He said that his cough usually isn't all gone until right at the end of the antibiotic anyways.

I miss our old dr. He used to put Lil' Chris on an antibiotic for 30 days and his cough would be completely gone by the end of it. Ever since we got this dr, she only wants him on antibiotics for 15 days...his cough isn't gone in 15 days!!!! So frustrating, b/c I've tried telling her this, but she doesn't want him on it longer than 15 days. I guess b/c you run the risk of becoming immune to it sooner...idk??? It just seems like he hasn't completely gotten rid of his cough in a very long time. As a CF parent you just feel so defeated...have we made the right choices in the past...are we going to make the right choice now???

All I can think of is to "empty my hands" and leave it up to God. I'm going to pray about it and follow God's lead as to what to do. Please pray with us for God's guidance and strength. Deuteronomy 20:4 "For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory." Cystic Fibrosis is our enemy....go get CF God!! :)

On a good note, Lil' Chris did such a GREAT JOB at clinic today!! He did so good during his throat culture that the nurse said that he should teach all the other kids to do it as good as him!! Nurse P asked if maybe we could get a video of him doing his Acapella and PFT's to show the other kids who don't even do it at this age!

In the 2 hours we were there, the kids were really good between watching TV and playing with the iPad, that I just had to take them to Chuck E Cheese! I didn't really feel like going after we got hit with the Pulmozyme news, but I knew I had to be strong for the kids and not let them see me get upset. So I let them play and I vented to my sister D on the phone:) Thanks D for always being there for me!! I'm trying not to talk negatively about it near Lil' Chris, b/c his lil' ears hear everything, if you know what I mean;)

I'll let you know what his throat culture results are when I call in a couple of weeks. Please pray that there are no new bad bacterias.

Sorry for venting on here, but sometimes I just gotta let it out!! I know Pulmozyme isn't the worst thing. It could definitely be worse!! Lil' Chris has been soooo blessed that he has made it 4 1/2 years with no nebulizer!!! It's almost unheard of in the CF world!! Some of my CF friends probably think I'm crazy complaining over just a neb, but it's just the "FOR THE REST OF HIS LIFE" thing that gets me. I'm sure every CFer and CF parent feels defeated every time they hear those words. WE NEED A CURE NOW!!!!!!! Time to start fundraising!! I need to clear my head of all of this and focus on fundraising, so that no CF family will feel this way ever again!!!!

Thanks,
M

Cough Update, Eating Chart, New White Vest Hoses, New Softgel Vitamin

Lil' Chris is still coughing;-( There are only 3 days left of his Omnicef antibiotic!! AHHHHH!!! So frustrating!! I just want his cough GONE!! We've still been doing extra Vest times too...that means he's been doing either 1 1/2 hours or 2 hours each day of his Vest!! Poor kid:( Today Ayla wanted to try his Vest:) She put it on and was so proud to be wearing it, it was so cute!! She kept saying she wanted to sit with Cas(Chris) :) She kept going "AHHHHHHHHHH" to make her voice sound all shaky:) LOL

If you didn't notice in my blurry picture above(sorry about that, but she was shaking, LOL;), we got white hoses for the Vest now! The old blue ones kept unraveling and I had to keep ordering new ones ALL the time! These white ones really seem to be MUCH better!! We haven't had any problems with them yet and we've had them for a few weeks now!! So if you are having trouble with the blue hoses too, just call the Hill Rom Vest company and ask them to send you the white ones. They told me that they are always working on improving the Vest, and that they were getting lots of complaints about the blue hoses.

On a good note...he has been eating more and trying new things!! YEA FINALLY!!! The other day he ate 3 plate fulls of fettuccine alfredo!! I know....WOW, right?! Lately he has been eating 5 whole chicken nuggets anytime we go to McDonald's too...who knew a lil' bbq sauce was all he needed;-) LOL!! Guess what???? Tonight he actually ate some of my Baked Ziti!!! I COULDN'T BELIEVE IT!!!! I distracted him by showing him Disney pics of his cousins who are at Disney World right now;) I'm so tricky, but hey....whatever works, right???? :) LOL

My wonderful hubby made an eating chart tonight for Lil' Chris!! YEA!!! Hopefully this will encourage him to eat more. He will get a sticker to put on the chart for each meal that he eats. Then at the end of the day if he has all 3 stickers, he will get to pick a prize!! :) His teacher at school uses this technique for good behavior and it seems to work, plus we used it when we potty trained him and it worked, so why not try it with eating?!?

At his last CF clinic visit, they gave us a bottle of SourceCF softgels to try instead of the chewable Vitamax. He was getting pretty tired of taking the chewable and it was a fight to get him to take it everyday. I wasn't sure if he would or could take the softgels since they are HUGE, but he took them like a champ!! I was so proud of him!! He's been taking them everyday since his last visit and he is VERY glad not to have to take the grape or cherry chewable Vitamax! When I tried to order the SourceCF softgels, they said that our insurance doesn't cover it and neither does BCMH. So I called and found out that a different softgel (Aquadek, I think it's called) which does the same thing is covered under BCMH, so I called the CF clinic and got the prescription changed and they are on their way! I hope he takes to them as well as he did the SourceCF ones:)

I'll keep you posted on his cough, eating chart, and the new softgels. Thanks for the continued prayers and keep 'em comin!! :)

M

CF Updates on Lil' Chris & Phoenix

I thought I would give an update on Lil' Chris' cold. His nose has been stuffy all day and he has been coughing quite a bit too. Although it is a dry cough as of right now, it still worries me, b/c it usually turns into a wet one. Yesterday his nose seemed to run more, but today I think it thickened up a bit like it usually does. I think it's b/c of the CF, you know...all that lovely thick sticky mucus;) Gotta love it!

He did a decent job wearing his mask today. I would say he wore it about 50% of the day. I tried getting Ayla to wear one too, and to my surprise she loved wearing it!! I guess it made her feel like a big girl;) I just hope she doesn't get sick too from when he wouldn't wear it, by the end of the night, I noticed her sneezing a few times and sniffling...uh oh:0

Lil' Chris ate pretty good today, so I was happy about that!! It was probably b/c I kept telling him that if he was done eating then he would have to put his mask back on.....so he kept eating;-) LOL!! I should do that more often;) LOL

As for an update on Phoenix...his mom wrote(hopefully she doesn't mind me copying this:) "Positive thoughts, well wishes, and prayers are working! Things are looking better for Phenny Man! Think we may of found the right combination of medicines! Go Phenny Go! (And yes I do mean that literally)" All I have to say is...it's about time the dr's got it right, poor kid!! Please keep praying for both our boys!!! We know prayer works wonders!!

I'll keep you posted,

M

PS. Thank you so much to those who sent Phoenix a card from my last post!! I know it put a smile on his face whether he knew you or not:)

Learn about VX770 & VX809 / Walk Update

If you want to learn more about the new drugs VX770 and VX809, then click on Lungs Behaving Badly to go to another CF moms blog who did a GREAT JOB explaining it! Gemma has a daughter named Sophie who is a couple months older than Lil' Chris and has Cystic Fibrosis and Tracheo-Oesophageal Fistula and Oesophageal Atresia. She is just adorable!! Gemma always leaves me great encouraging comments on this blog, so I just adore her too:)

I hope you check it out....these drugs are the future of CF and they are the reason I do all my fundraising...plus....Gemma has a GREAT blog:)


On a Great Strides Walk update... I got a couple of call backs today and we now have Frito Lays chips and 10 bags of ice from Speedway all donated!! YEA!!!

Here's what the kids like to play with...(remind me again why I bother buying toys???;-) LOL





Have a GREAT day!!

M

Venting / 1st Fundraiser of 2011 Coming Up

YEA!!! I got my first sponsor!! Thank You Aunt Mar!!!! You won the 1st sponsor of 2011 award;-)

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I've updated my Great Strides video with a couple of new pics, but kept the rest the same. If I had the time and energy, I would redo the whole thing, but my plate is kinda full at the moment. I made a list of all that I have to do to get ready for the walk, my fundraisers, and to get raffle prizes ...and....well...it's a lot!

Organizing a walk takes a lot of effort and time. Something I don't have either of right now. I don't have the time that I used to anymore, b/c Chris and I are hardly ever home together anymore. When it's just me and the kids, I can't seem to get anything done b/c they just want to play with Mommy instead of Mommy "working." I hate that I have to tell them, "Mommy has to get some work done right now, I'll play with you when I'm done." I feel like that's all I say to them at this time of year, b/c if I'm not busy "working" on the walk or fundraising, then I'm busy "working" on the laundry or dishes or vacuuming or cleaning and organizing their drawers and closets for the change in sizes and season!! I do all this AFTER working a full time job!! Oh yeah, and my back still hurts;(

Not only do I have a list of fundraising stuff, but I have a list of other things that need done around the house too that I just can't seem to get to or have the energy for... like take everything out of the fridge and clean it, steam the hardwood floors, make some sense of our messy basement, clean out my own drawers and closet, clean out the junk drawers, etc....

I think I get like this every year right before my first fundraiser, b/c there is so much work. I have to make new flyers, new poster, new signs, get raffle prizes, etc. Once I get that first one done, then the next ones are a breeze. It's just all so overwhelming right now!! I think that's why I don't have the energy! This time of year, I wish my husband was a stay at home dad so that he could help by doing all the day to day chores, so that I could concentrate on fundraising since he doesn't seem to want to do that kind of stuff, but not too many guys do;) LOL

I know I'm just stressed out now, but once I get more things for the walk and my first fundraiser done and more donations, I'll feel a lot better:) Luckily I'm the type of person that can walk into work and forget about all my stress at home. I "leave it at the door" as they say;-) Many coworkers didn't even know my son had a fatal disease until I did our first A-team(AIA) event for Cystic Fibrosis when he was about 1 year old! I'm not one to talk much about my personal life at work, I'm one to work and see what I can make better:)

Thanks again to Aunt Mar for starting us off this year, and thank you to Panera Bread for donating 100 bagels for the walk this year!!! This makes me start to feel better:) YEA!!

Join us for our first fundraiser of the year on Monday, March 21st at CiCi's Pizza in Wooster between 5pm and 8pm to help find a CURE for Cystic Fibrosis!!! There will be a raffle for a 1 hour massage at Tips, Toes, and Beyond, and a percentage of your receipt will go towards a CURE!!

Thanks for letting me vent, I needed that;) LOL
M
PS. Lil' Chris' cough seems to be getting better, so thank you to everyone for all your prayers:) We started potty training Ayla this past Saturday night, and she hadn't gotten any stickers on her chart(actually gone peepee on the potty) until Monday night. Hopefully she trains faster than Lil' Chris:-)

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

3rd Annual CF Clinic Visit 6/16/10 and 1st Boo Boo;(

Sorry for not updating sooner about his clinic visit, but this is what I have been dealing with...


His first real boo boo;-( He fell in our driveway while running and scraped his elbow and knee;( Ever since then, he hasn't wanted me to leave his side...poor kid. So that's why I haven't been able to finish my montage and post, sorry and sorry the video is kinda long too...I didn't have time to edit it too much;)

CF Clinic appointment the other day went great!! His weight wasn't the greatest, but everything else went great!! His weight was 33.2, only went up 2 ounces in the last 3 months. His height was 38 1/2!! WOW!! Last time I have that it was 37 3/4, but they said that he grew 2cm...maybe I got it wrong last time...IDK. His BMI went down from 55% to only 15%;( They said it was b/c he grew taller, but didn't gain a lot of weight. They tried telling him that he needs to eat more and try new things, so we are working on that. I keep telling him..."The doctor's said you need to try different foods..." So far, he ate 3/4 of one chicken nugget 2 days in a row, and the other day he ate some of my taco pizza from Taco Bell!! That was BIG for him, b/c right now, his diet consists of: Cereal with whole milk, pop tarts, cheese(loves the Mickey Mouse cheese;), yogurts(loves the Danimals;), chocolate scandishakes(600 calories), water or apple juice, hot dogs, sometimes some lunch meat and cheese, chips(all kinds;), cheese curls, fruit snacks, bananas, apples, cheese whiz and crackers(I make letters on the crackers with the cheese;). That's about it though!! He won't eat any pasta, bread, meat, or veggies. Hopefully he grows out of this stage REAL soon!!

Lil' Chris did such a GREAT JOB all day long!! He wore his mask from the car to our room and back...that's including every time we were in any hallways and when we were in the lab and getting chest x-rays. Such a BIG boy!! We were there for FIVE LONG HOURS, but he didn't cry at all!! He didn't cry when he got his throat culture or even when he got his blood work done!! He wanted to sit for the first time and he even opened his mouth when she asked him to! I couldn't believe it!! He didn't even flinch with the blood work!! That's my boy;-) lol I didn't go with him to get his chest x-rays, but my hubby said that he did good, but fussed a little bit about laying down.

We met his new CF doctor now that Dr. K moved away. Dr. T is super nice! Lil' Chris seemed to really like her too:) YEA!!!

Afterwards, we went to CiCi's Pizza to eat and then went home and had some fun with one of his birthday presents;) It was a pretty cool Wigglin Water Sprinkler;) It had lots of lil' wiggling sprayers that went everywhere! He had a BLAST!! I loved hearing his lil' laugh and seeing his big smile:) It was so much fun!!

Here is a glimpse into what he goes through every year....(be prepared to be AMAZED as to how well he sits still for everything at only 3 years old;)....

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Fundraising Time

It's that time of year again...Yesterday I got my fundraising packet out and started making calls and sending emails. Our walk in on May 1st at 9am in Wooster at Ida Sue School. I can't believe how quickly it is approaching!

I called CiCi's Pizza to set up some "Dough Raisers" where 10% of the receipts will go towards a CURE for Cystic Fibrosis. I'm planning on doing one on Tues Jan 26th from 5pm-8pm and then one each month from now until May. I'm going to make them A-Team events where associates from Kohl's will come and help buss tables so that Kohl's will donate $500 each month.

I plan on calling to get CiCi's to do Pin-ups again where customers can donate $1 towards a cure when they check out and in return their name will go up on the wall. I might be able to get about 15 CiCi's to do them if all goes well:)

I called Friendly's to see if we could do a fundraiser there too. I just have to get all the paper work filled out and then set up a time and date. They donate 15% of all receipts!

It's also time to start getting things set up for our walk too. I emailed Panera Bread to see if they could donate any food for the day of the walk. Hopefully that works out and if not, maybe they could do Pin-ups to help raise money???

I've also been thinking about getting a head start on our commercial for our walk. I'll post it at the top of my blog when I get it finished and leave it there until the day of the walk, just like I did last year;)

I'll let you know more when I find out,
M
PS. Please share with me any other good fundraising ideas that have worked for you. I love doing something new;-)

Ayla is 9 1/2 months/Halloween Pics:)

Guess what Ayla is doing now??? (Steph, don't let Tyler watch this video...Ayla had to make sure his Christmas present works;-) LOL

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Ayla is now going from lay down position to sit up position all by herself!! I went to go get her out of her crib the other day and there she was....sitting up(we lowered her crib since then;)!! What a big girl she is becoming! Now a day or 2 later and she is sitting up all the time while playing on the floor! She catches on quick;) Tonight she was even trying to pull herself up on one of Lil' Chris' big toys! It won't be long now before she is standing ... and then walking!! YIKES!!! She still isn't crawling on all 4's, she rolls to where she wants to go and then sits up...too funny:) She sure is getting into everything though!! Tonight I caught her playing under the kitchen table trying to pull down my laptop off the table!! It was so cute I had to take some pics;) Now that she is getting into stuff that she shouldn't be, I have to tell her "no" more and have to move her away from it. It's funny, b/c Lil' Chris is copying me:) If he sees her doing something wrong, he says "No Ayla, no!" and then sometimes he drags her away. You can see in the pics that he is dragging her out from under the table;-) Too funny!!

So I can't believe my baby girl in 9 1/2 months already!! Her personality is really starting to show:) (BTW so are her 4 lil' teeth;-) She is definitely different from her big brother! She knows what she wants and goes after it! She lets you know if she doesn't want something...like her bottle! When she is done drinking, she pushes it away and WILL NOT let you put it back in her mouth!! And if she doesn't want to go down for a nap...she definitely lets you know! All that said, she is a pretty good kiddo though:) She loves to get hugs and kisses, loves to play with all the toys(including her bothers potty...gross;), loves to sleep from 7pm-7 or 8am, loves her babysitters, loves to shake her head no when you say "No" to her, loves to suck on her pointer finger when she is sleepy, and could play in her crib for hours just like her big brother;-) Oh yeah, and she LOVES to EAT!!! She has not pushed away any food that I have tried to give her, other than her bottle of course;-) She loves food way more than her bottle! So opposite from Lil' Chris at this age. I wish he would have eaten solid foods at this age, what am I saying...I wish he would eat them NOW! He is such a picky eater compared to his lil' sister. Maybe watching her eat will help him to eat more...keep your fingers crossed;-0

Ayla loves sippy cups...especially her brothers, which she seems to always find;-) We have to take Ayla out of the living room when Lil' Chris is doing his Vest, b/c we usually give him a snack and a sippy cup. If she's in there, she gravitates to the food very quickly and eats it all! She'll even grab his cup and drink his yogurt! Now you know why we made her Piglet for Halloween;-) LOL Speaking of Halloween....here are the Halloween pics...

Make photo slide shows at www.OneTrueMedia.com

All in all, Ayla is a very healthy, happy lil' baby girl and we couldn't be happier that she is in our lives!! I love to see her beautiful smile everyday:) Her and Lil' Chris just brighten my world! I couldn't imagine life without them!
M

Cool Link About CF and How do I count Calories for Lil' Chris?

Here is a cool link that my good friend Carmen's mom sent me...www.sacfa.org.za


If you are a CF mom or even a CFer, you should check it out. If you click on the "CF Kids" it's pretty cool how they animate and explain CF and enzymes and just everything about CF! You could even watch it with your CF child and they would probably love it just like Lil' Chris did:) It's a lot of fun!


As for an update on Carmen, she is doing well CF wise, but she just got 2 wisdom teeth pulled. OUCH!! She is also doing a CF clinical trial still, which I admire her for:) I pray she continues to do well. I'll keep you updated.


I've been meaning to write Susanna for an update on her 2 girls who have CF, so I will let you know when I find out. Hopefully all is well with them.


To update you on Lil' Chris, he is doing better, his cold is all gone. He still coughs sometimes, but it's not the wet cough anymore so that's GREAT news!! I guess the Augmentin is really kicking in:) He still is not eating as much though and is having some really smelly diapers...if ya know what I mean;-) I keep thinking that maybe we forgot to give him his enzymes one time or something, but we don't think we did! Weird. Maybe it's just the Augmentin finally hitting him..IDK.


So we tried the rest of the supplement drinks that Alma gave us and he still would not drink any of them!!! So frustrating when I know his body needs the extra calories and nutrients!! So what did we do today???? We went food shopping and spent tons of money and time searching for anything with tons of calories for him that we think he might eat! Well, we hope anyways. If not, momma's gonna gain back the 27 lbs she lost!! Nobody wants that, esp me!! ;-)


I'm not really sure if I'm reading the labels right for what's good for CF, I've never really had to look at labels before except to see if it had milk in it or not b/c I'm lactose intolerant. So this is what I look at and if I'm wrong, someone PLEASE let me know! We all know that food is so important for CF!...

1. Cheese crackers with Peanut Butter: Serving Size=1 package(6 crackers), Calories=190 I just noticed now that I am looking at them all, that they all say Calories from Fat. What does this mean? Is this what I should be looking at? Or do I just look at the Calories per serving?? I think this should be something that the CF clinic should teach new CF parents! Luckily I have you all to help me;-) So this one says...Calories from Fat=90.


2. Mini Oreo's: Serving Size=9 cookies, Calories=130, Cal from Fat=50.


3. Betty Crocker Fudge Brownie Mix: Serving Size=1/20 pkg, Cal=Mix is 100 and Prepared is 170. Cal from Fat=Mix is 5 and Prepared is 80. What does Mix mean? I feel so stupid now;-)


4. Chocolate Icing to add extra calories to the fudge brownies above: Serving Size=2 tbsp, Cal=140, Cal from Fat=50.


5. Jell0 Oreo Cookies 'n Cream instant pudding mix: Serving Size=1/4 pkg, Cal=120, Cal from Fat=10.


6. Reese's Peanut Butter Chips(I'm getting desperate here, I don't intend to bake them into anything. I'm just going to see if he'll eat the chips alone for extra calories;) : Serving Size=1 tbsp, Cal=80, Cal from Fat=35.


7. York Peppermint Pattie: Serving Size=1 piece(it's a big one), Cal=140, Cal from Fat=25.
8. Peanut M&M's: Serving Size=1 pack, Cal=250, Cal from Fat=120.
9. Chocolate Instant Pudding Mix: Serving Size=1/4 pkg, Cal=Mix is 110 and with 2% milk reduced fat is 170, Cal from Fat=Mix is zero and with 2% milk reduced fat is 25. Again, not sure. If I use whole milk the Calories will increase right??
10. Heavy Whipping Cream(thanks Alma for the suggestion and where to find it in Wal-Mart;) : Serving Size=1 tbsp, Cal=50, Cal from Fat=50.
    

Hopefully someone can explain the right way how to read the labels for me that will benefit Lil' Chris. It will save me time and money probably...hopefully;)

Ok, now that I just took a pic of it all, I realize that this is all junk food!! What kind of mom am I? lol I got tons of other stuff too to try. He's so picky though! We'll see if he eats any of it.

So which one of the above do you think is the best for Lil' Chris and why??

M

PS. Lil' Chris' latest song that he likes to sing is "We Will, We Will Rock You!!" It's from one of his cousin's toys that he played with weeks ago! What a memory, huh? lol

****UPDATE: I just gave a lil' cup full of the Reeses's Peanut Butter Chips to Lil' Chris and he "drank" them out of the cup and then said "Mmm good!" YEA!!! But... then he wouldn't eat anymore:( Hey, maybe I'll add some to the brownies;-) lol He seems to be liking the mini oreo's, he keeps asking for more of them:) He ate one Cheese and Peanut Butter cracker and then asked for more mini oreo's. lol He took a little taste of the York and then wouldn't touch the rest. lol I'll let you know how the rest goes:)