Productive Day!! :)

Ahhhhh if feels so good to be back in the fundraising mode again!! That is....only when the kids aren't around driving me nuts and I can actually get some stuff done!! ;-) LOL! Chris took the kids out for a drive and some lunch while I made calls.

Chris and I both had off today, so we tried to get as much done as we could for the walk today. Oma came over to help too...thanks Oma!

Here's what got accomplished today:

1. Made all my calls about getting food and entertainment for the walk. Now it's just the waiting game of waiting to hear back from them before I call them again;) lol



2. Found out how we can get electricity for the pavilion this year



3. Got letterhead ready to get Pat Catan's to do a craft at the walk



4. Clear Picture gave us the okay to do another commercial for our walk this year AND they are going to not only play it in Wooster, but they are going to play it in the Massillon area too! YEA!!! I also got a couple of pics from Heather, who has 2 kids with CF, that I am going to put in the commercial!! Now Chris and I just have to find some quite time so we can record it...that's not always easy with 2 screaming kids;-) lol



5. The Daily Record is going to print something up in the newspaper over the next couple of days about the walk and then will do a full article with a pic closer to the walk date



6. Dropped off some flyers at the pediatricians(they always keep them at the check-out window for me:)



7. Worked on making new flyers for the tables at my fundraisers, just need to print them now. Chris fancied them up with a picture this year:) YEA!!



8. Got form for fruit donation, just need to drop it off at Buehler's soon



9. Got some raffle prizes from Red Lobster, Applebee's, BW3's, and Tractor Supply & Company.



10. Best of all......I FINALLY GOT A GREAT PIC OF LIL' CHRIS DOING HIS VEST!!! Now I can put that on ALL my fundraising stuff:) YEA!!!! Boy was that rough!! It really takes both me and my husband to accomplish this! I snap away while my husband stands near me and tries to make him laugh or smile. Thanks Honey for helping me out so much today!! I couldn't have done a lot of this stuff without your help!!!

I was also able to get this great pic for the new header pic for the blog;) I love it b/c he always does this whenever one of his hoses pops out... he uses it like a hairdryer:) LOL
So, I feel MUCH better knowing that I got a lot accomplished today for the walk!! I can take a deep breath of relief;-)

Some more good news....Chris and I can't remember Lil' Chris coughing at all today!! That's a GREAT sign!! Maybe his cough IS going away all on it's own!!! Only 15 more days til his next CF clinic visit at Children's Hospital!!

Please keep Lil' Chris in your prayers...they are definitely working!!!

Thanks,
M
PS. HAPPY BIRTHDAY TO MY SIS-IN-LAW STEPHANIE!!!! WE LOVE YOU!!

Lil' Chris' First Ear Infection;-(

Last night was a rough night.

At 3:30 in the morning, Lil' Chris came into our room and woke me up, so I put him on the potty and put him back to bed, but he wanted his back rubbed and was acting a little weird. I rubbed his back and went back to bed, and about 30 minutes later he came back into our room, which is unusual. So I put him back into bed, but he started coughing a lot, so I stayed with him and started pounding on his back(CPT) like we used to when he was little(cupping my hand). He kept coughing, more of a dry cough than a wet cough, so I pulled out his old rubber percussor and started pounding on his back. I did that for a little, then I asked him if I could do his chest and sides and he actually said Yes. So I did his chest and sides, but he still was coughing. After a little bit, it got better, so I put him back in bed and then I went back to bed since I had to get up early in the morning.

About 15 minutes later, he came back into our room. This time my husband got up with him so that I could TRY to get some sleep before I had to get up at 6:30 for work. My husband said that he was complaining that his right ear hurt. I think he got up another time after I left for work saying his ear still hurt, so my husband sat on the couch with him for a little bit, then he asked to take a nap...this was probably about 8am;) So he went back to bed and I think got up around 10 or 10:30 when my MIL was there. She called me at work telling me that he was complaining that his ear hurt and that his right eye was a little red. This was the first that I had heard of the ear ache since I didn't get to talk to my hubby before I left for work.

I was a little concerned since he has never complained of an ear ache before, so on my lunch break I called the pediatrician to get advice and she wanted to see him today. So my wonderful boss let me leave work 1/2 hour early to get him there before they closed. She took one look in his right ear and said it's definitely red and that he has an ear infection. I was kinda taken back since this is the first time he has ever had an ear infection. I wasn't sure what to do, since Ayla never had one either. So I asked her lots of questions:) lol

Anyways, he is now on Augmentin for his ear infection for the next 10 days. She gave me a choice of 3 different antibiotics, but I chose Augmentin since I know he likes that one and it usually works for his coughs. He wasn't coughing much today, but maybe this Augmentin will help it not to develop into anything worse;) Hopefully tonight won't be another up and down night.

Please pray his ear infection, cough, and eye thing goes away really soon! The doctor didn't seem to think the red eye was anything. She also said that his lungs sounded clear, so that's a very good sign and a relief!

Thanks for all your prayers,
M

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

400 Hours on the Vest/Important CF Stuff

Lil' Chris has reached 400 hours on his Vest! Crazy when you think that in the past 19 months, my son has sat still(or somewhat still;) for 400 hours while a vibrating vest shakes the mucus out of his lungs. Poor kid is only 2 1/2!!!! Looking at the pics, it's hard to believe that Lil' Chris was Ayla's age now when he first got his Vest!! I should dig up some of those pics on of these days:) This video was taken on Tues 12/15 when he reached 400 hours. At the end are a couple of pics and a video of him playing a balloon guitar he got from an elf at the mall...he LOVES guitars!!

Make photo slide shows at www.OneTrueMedia.com

Lil' Chris has a CF clinic appt on the 30th, so we are trying to get him to eat as much as possible to get his weight up, but it's hard when he refuses to eat anything;-( I can't wait until he grows out of this stage! I'll take any advice you may have for a very picky eater.

Both Lil' Chris and Ayla got their H1N1 booster shot last Wed. Ayla also got her Season flu booster shot too, then she had her regular check up...she weighs 21 lbs and 6 oz., and is 30 inches tall!!! My lil' piglet;-) She is in the 75th percentile for her weight and in the 90th percentile for her height!!! Our dr always laughs at me when my jaw drops every time I hear 90...I'm just not used to hearing 90, I don't think Lil' Chris was ever in the 90's for anything...I'll have to look at my records;-) I WISH I would hear 90 for Lil' Chris:) Someday, someday;)

Please say a prayer for Wesley's family. He passed away from Cystic Fibrosis yesterday and he was only 17. He got his wish...to know what it was like to breathe...he had new lungs for a year before he passed. Just breaks my heart. A double lung transplant isn't a cure. Click here to read Wesley's page.

Click here to read a very interesting article about how a CFer in the UK was saved by receiving "salvaged" lungs. Lungs that would have been unsuitable. This could be HUGE for CFers if this comes to the states!!!

Lastly, check out this new drug that could really help CFers as well...click here to read about aztreonam lysine for inhalation. The drug would offer a much-needed antibiotic alternative for cystic fibrosis patients who battle recurrent lung infections and often develop resistance to existing antibiotics. It is manufactured by Gilead and will fight against Pseudomonas Aeruginosa infections in the airways of Cystic Fibrosis patients. It has already been approved in both Europe & Australia under the name Cayston(R) and the US has been lagging behind in its approval. Our Cystic Fibrosis patients with Pseudomonas Aeruginosa are running out of antibiotic options to help fight infections in their lungs. Please email druginfo@fda.hhs.gov to help get this drug approved if you are a CFer or a caretaker of a CFer. Just send a short emial stating how much this could effect your life or child's life. Also copy the Commissioner of the FDA too margaret.hamburg@fda.hhs.gov and then bcc the CFF at publicpolicy@cff.org. Thanks so much for helping get this important drug approved as about 60% of people with Cystic Fibrosis have a chronic respiratory infection caused by the bacteria called Pseudomonas Aeruginosa that settles into the thick mucus trapped in the airways. Once it sets up house in the respiratory tract, Pseudomonas Aeruginosa is almost impossible to get rid of. Respiratory failure caused by this infection is often the ultimate cause of death in many people suffering from Cystic Fibrosis.

Until there is a CURE...
M
PS. I have to wear my hospital mask for the next few days, since I got a cold last night;-( Ughhhh!!! Please pray that the kids don't get sick too, esp Lil' Chris.

H1N1 Shot/Ayla's Cough Question

On Friday we got a call from our pediatricians office saying that they got a batch of the H1N1 flu shot in and that we were one of the first ones on the list b/c Lil' Chris has Cystic Fibrosis and is at high risk. We must have been one of the first people they called, b/c they said we could pick whatever time we wanted to come in on Saturday. So we opted to go at 10am. Boy was it busy in there!!! Of course Lil' Chris and my husband stayed out in the hallway away from all the germs while I waited with Ayla in the waiting room. I was expecting a long wait b/c they were so busy, but it wasn't long at all! Once we got in the room, she asked us some questions and then was ready to give them the H1N1 shots and be done, but I asked if we could do both the seasonal and H1N1 so we wouldn't have to come back. I explained to her that we take a risk every time we come to the doctors with Lil' Chris. She understood and went and asked our doctor to see if it was okay. She came back a few minutes later and wam bam, they both got one shot in each leg and we were out of there! I was so surprised at to how quick it was!! I sure was glad though:)

We didn't get to see the doctor, so I didn't get to ask about Ayla. She has been coughing the last couple of days. I almost feel like a first time mom with her sometimes, b/c I am so used to raising a kid with Cystic Fibrosis who can't take any cold or cough medicines. Does anybody know what I can do and can't do for a 9 month old's cough???

This morning was a rough morning for Lil' Chris. He woke up on the wrong side of the bed I guess. He screamed and cried through 27 minutes of his Vest treatment this morning and then I changed the show that he was watching and presto the tears stopped! Now why didn't he just tell me he wanted to watch the Fresh Beat Band??? Oh well. The weird thing is that afterwards he asked to go to bed.....I said, "It's only 9:30am, are you sure??" He said yes and I put him down and haven't heard a word. I guess all that crying wore him out...or maybe it was from the shot yesterday????? IDK Hopefully he wakes up in a better mood.

We had a BLAST trick or treating on Friday....pics and video coming soon:)
M

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:)

Back from the Pediatricians/No more Fever! Yea!

He fell asleep on the couch watching TV. We unfortunately had to wake him up to take him to the dr.s :(

We are back from the Pediatrician and Lil' Chris is doing better, but still not himself:(

The dr. said to stop the Augmentin, b/c she wants to check a stool sample for C-diff. Apparently you can get C-diff from antibiotics. Even though he has taken Augmentin many times before, she said it can happen at any time. I'm not exactly sure what C-diff is, so I may have to do some research on it. Does anyone have any experience with C-diff? The dr. said that if he does have it, then he will be more likely to catch it more often when he is on antibiotics. Our reaction..."Oh great! He is always on antibiotics!" Ughhhhh

She said his weight was 28 lbs and in the 50th percentile. According to her charts, his weight looks fine, not the best, but ok. They did not check his height. The nurse said his temperature was gone, so that was a relief!! After the Tylenol, the cat nap, and the 40 minute wait in the waiting room, he felt much cooler! THANK GOD!! Don't worry, Lil' Chris didn't wait in the waiting room, just Ayla and I. Chris was keeping him occupied out in the hallway so he wouldn't catch anymore germs. We always do that whether at the CF clinic or the Pediatricians :)

She said to give him plenty of fluids until we get the results back which will most likely be the beginning of next week unfortunately. I hope the clinic doesn't get mad that we stopped the Augmentin. Our CF dr. wanted him to keep taking it. I tried calling them when I got home, but it was too late and they were closed.

Hopefully he doesn't have anything serious. I'll let you know the results when I get them. Please say a prayer that he will start eating and drinking and get his energy back.

M

PS. We got his throat culture results back...he cultured Staphylococcus areus sensitive to Oxycillin (MSSA). He has grown this bacteria before and it requires no changes to his treatment.

Fever of 102.2!!!

Please pray for Lil' Chris. He woke up this morning with a 102.2 fever. His whole body is just burning up! He drank a little bit of water, but won't drink anymore. He is real sleepy and not wanting to play or anything. He just wants watch TV or be held. Poor lil' guy, I feel so bad for him. First all these nasty foul smelling diapers multiple times a day, then a diaper rash, and now a fever!! We still think that it is the refill that we got for his Augmentin. It must have been a bad batch like Katey said. I guess this sometimes happen, unfortunately:( Stupid Drug Mart! I don't think we will be going back there if that really is the reason for all of this!!!

I called the CF clinic immediately and asked to speak to a CF nurse. They put me through to voicemail, so I called back and said "Can you please have a CF nurse paged!" Then she knew that I was serious and got someone for me to talk to:) I talked to the nurse and then she called me back after talking to our dr. He said to go to our Pediatrician to see if he picked up a virus or something, but to still continue the Augmentin. I said "Are you sure?" She said that's what he said, so I called our Pediatrician and made an appointment for 2:30. She said if it gets worse before then to go to the ER.

Thankfully my wonderful hubby came home from work early so we could take him to the dr.'s and also to pick up some Tylenol since ours was expired. This is only his second fever and the first one was a reaction to a shot he got when he was just a month old. Hopefully the Tylenol works. Charmaine suggested sponging him down with tempid water too, so I may try that too. Thanks Charmaine for always being there for me right when I need you the most;-)

Ayla's Dr. Appt. & OC Pics

First off...BIG THANKS TO MY COUSIN DAWN FOR HER VERY GENEROUS DONATION TO HELP FIND A CURE FOR CYSTIC FIBROSIS!!! THANK YOU SOOOOO MUCH DAWN!!!! I just know a CURE will be found soon with so many generous people in the world like you and ALL my donors:)

I was looking at some of my montages and noticed that I never posted a few of them, so here is one from our trip to Ocean City Boardwalk with my in-laws and brother-in-law and his 3 kids. We are wearing our CF walk shirts, b/c we walked for a CURE earlier that day:) It just so happen that the weekend we went there, they were having their Great Strides Walk, so we got to go to it! I was so excited to finally be a part of our NJ team for Lil' Chris;-) It was a lot of fun:)

Photo and video editing at www.OneTrueMedia.com

Ayla had a doctor's appointment the other day and she is doing GREAT!!! She weighs 15 lbs, and is 25 inches long, and is in the 75 percentile across the board!!! Good news is now she can start eating cereal! Now the fun begins.....trying to feed 2 kids food;-) lol As of right now, Ayla is drinking 8 oz of formula about 4-5 times a day. She sleeps from about 8:30pm-7:30am. She takes about 2 or 3 naps a day. She loves to watch TV and watch her brother running around;-) She loves to kick her feet and try to squirm out of her bouncy seat and swing:) She still doesn't like to stand though, but she will soon enough I'm sure;) Here are some pics of her when Mommy forgets to buckle her in her swing...oops:) Also I added some pics of Lil' Chris caught sitting on the blue chair that holds his Vest machine when not in use...too cute:) And some pics of his new toy with lots of tools...THANKS AUNT STEPH & UNCLE GREG, & TYLER, NATHAN, & LINCOLN!!! He LOVES it and has been playing with it non-stop!!!

Photo and video editing at www.OneTrueMedia.com

I hope you enjoy the pics, there are lots more to come(once I get time to upload them that is;-)
M

I STRUCK GOLD!!

Ok, maybe not gold...but it was a successful fundraising day;-)


Our picture with the newspaper went ok. It was really windy and cold and we were in our CF t-shirts. I'm kinda afraid of what it's going to look like. I knew I should have put my hair in a pony! ;) Oh well. What matter most is the words that's going to be said in the article. Getting awareness out about CF is the most important thing. I can't wait to read it! The photographer didn't say when it was going to be in the paper, and we don't ever get the paper, so if someone sees it let me know!! I'd like to buy one for Lil' Chris' scrapbook:) Jack, Alma's son was there, and Mary and I held a pic of our CF kids. I think it is going to be really cute!!


Afterwards, I went to tons of places to try to get donations, sponsors, and/or coupons for raffles. I didn't get any huge sponsors or donations, but I was able to get a lot of coupons and gift certificates for our raffle the day of the walk!! I tried to get a huge sponsor from the Cleveland Clinic, but they already are at their max for this year. She took my info and hopefully they can next year. I asked her when I should contact them again for next years walk and she said the end of this year. I will definitely do that, b/c that would be huge for us!! They currently are sponsoring Relay for Life, which is Great!! They display a huge 4 or 6 foot banner I think at all 3 or 4 locations! I told her that we do 4 foot banners as well! I really hope we can get them on board.


I went to our pediatricians office to see how the Pin-ups were doing and THEY WEREN'T DOING THEM!! I was SO disappointed:( One girl said they couldn't collect money or something like that. Oh well. I thought that our dr. had asked that day I was there if they could do them and they said yes, but I guess not. Anyways, I left a sponsor form for our dr, so hopefully she will donate. I also left a sponsor form at my OB's office. She was the one who delivered Lil' Chris and she was there when we found out that we were both carriers and she was the one who tried to get us to go to counseling before Lil' Chris was born. Hopefully she will donate, she is such a sweet lady. Both dr's are very sweet and wouldn't surprise me if they donated or came and actually walked!!

One of the many places I went into was Family Pools & Spas. Don't ask me why, something made me...fate, I guess. As I started to tell them about CF, the manager stopped me and said we already do that! As she was bringing me to the counter to show me, I thought maybe it was for something else. But low and behold...it was for CF!! I was FLOORED!! I couldn't believe they were doing Pin-ups for CF in my town and I didn't know about it! I don't think any of the CF moms in this area knew about it!! Not only that, but a percentage of the BioGuard products sold goes to CF!! She told me that ALL their stores do this!! How exciting for CF!!


Anyway she went on to tell me that Emily(who started this foundation) was diagnosed with CF at age 9. She was reading some Babysitter Club books at the time and one in particular stuck with her. It was about a girl who raised money for local hospitals by biking. Anyway, Emily thought she could do this for her disease! So that is when she started getting pledges for laps. She is a great swimmer. Her original goal was $3,000, but instead raised $60,000!! Since then, she has raised 1.3 million dollars!!! She started a non-profit organization called Splashforcf.org and also teamed up with the CFF and started Lapsforcf.org. Check them out and join! She has some great videos and pics on there. Click here for Emily's story. I can't believe all that she has done and she is only 16 years old...AMAZING!! This is something that I would LOVE to do for Lil' Chris!! Here is a pic of their donation jar and a stack of their Pin-ups.



Ok, back to all the coupons and things I got for raffles:

1. Papa Johns is going to donate 5 pizza's for the day of our walk. They open at 11, so she said they could bring them between 11 & 12. I'm hoping this can just be our second round of hot pizza's or something. She also said she is going to try to throw in a couple more if she can;-)
2. Gary's Liquor Store is going to talk to their water vendor to see if they can donate water bottles for the walk. I have to call him back on Friday.
3. Wal-Mart said they don't do gift cards or anything anymore, but we could do a fundraiser outside their front doors to raise money...kinda like they do for girl scout cookies. Also, she gave me a paper to fill out to possibly get approved for a grant, maybe $1,000!!! I'm going to fill that out and get it back to her soon. Pray we get this grant!!
4. Both Burger King(by Taco Bell) and Quiznos said that they were out of coupons and that they would give me a call when they get more.
5. Lowe's gave me a fax number to send a letterhead with my request. The lady who I needed to talk to was too busy:(
6. Tractor Supply & Co. gave me a picnic basket, a t-shirt, 2 measuring cups, a tape measure, and 4 hats to give away in the raffle!! Yea!! It's always the places you least expect that give stuff...lol:)
7. Taco Bell gave 6 "2 free items of choice" coupons
8. Pizza Hut gave 2 "1 free large pan/item" coupons (we might have to use them for the walk if we can't find any other food donors;)
9. Red Lobster gave 4 $5 gift certificates
10. Buffalo Wild Wings gave 4 "6 free wings" coupons and 3 $5 gift certificates!!
11. Tumbleweed gave a $20 gift card!! YEA!!

So altogether, I got $55.00 worth of gift certificates, 12 coupons to give out as raffle prizes, a picnic basket full of stuff to give away as a raffle, and 5 pizza's donated for our walk!! Not bad for a couple of hours work;-)

Special thanks to Daniel's dad for setting up our picture with the local newspaper, and for getting 50 lbs of fruit donated for our walk!! He gets my "WAY TO GO" award!!! Great Job!!

M

PS. BTW, I went to our local CiCi's and THANK GOD the good manager was there!! He found the Pin-ups and he got the flyer off of the community board and he said that they would start doing them TODAY!! It was really my own fault for not giving them to him directly in the first place. But I didn't really think it was that hard to say "Hey some girl dropped these off". Oh well. Lesson learned.

Ayla is 3 Months/Lil' Chris' Throat Culture Result

Can you believe it? Ayla is 3 months old ALREADY!! Where does the time go!?! She is getting so big so fast!
She had a dr.'s appt. today...she weighs 12 lbs. and 12 oz. and is 24 inches long! Her weight and height are in the 75th percentile!!! I couldn't believe it!! Lil' Chris' height has been 75, but NEVER his weight! It was a good number to hear. I just pray Lil' Chris will get to the 70's too. It is SO different raising a non-CFer. No enzymes, no spoon and applesauce everywhere she goes, no percussions(pounding on her back, chest, and sides) 2 times a day, no acid reflux, no throwing up all the time, no worrying if she is getting enough food, no vitamins or Prevacid, no worrying about her catching every germ possible(well I do have to worry about her catching germs, but not in the same way as I do with Lil' Chris), no going to Children's Hospital every month, no worrying about hospitalizations, and no worrying if she is going to live past 37. I just never knew how different it would be raising a non-CFer, and how different it would feel. I love them both SOOOO much!!!

Here is a list of things she is doing now:
sleeping throughout the night-YEA!!
making longer noises-so cute:)
loves watching her big brother play
loves giving big huge smiles when she sees us
she is drinking 6-7 oz. 4-5 times a day
she will only sleep on her belly
she loves being put to sleep by patting her butt
she LOVES bathy time:) She never cries when getting a bath
the only time she starts to whine is when she is sleepy or hungry
she loves to kick her little legs-that includes kicking her blanky off ;)
she loves to watch tv
she hates her binky, but loves to suck on her hands
she loves watching her mobile above her crib(she gets a BIG smile on her face:)
she loves pink(ok, maybe that was mommy's doing;-)

Overall, she is doing great!! She was such a good girl at the dr.'s today! She only cried when she got her shots, and even then, it didn't last long. What a good girl! I asked the kids pediatrician if they would do Pin-Ups for Cystic Fibrosis for Lil' Chris and she said "Absolutely!" I was SO excited!! I gave her a pack and I also gave her a bunch of Great Strides flyers in a stand, so she could put them out for other patients to see and take. I also gave her a stack of business cards that my husband had made that say all the info about the walk. It also has my blog address on there, so hopefully I'll get some more readers and get the word out more about CF:)

On another note, we got Lil' Chris' throat culture test results back...he is growing 2 bacterias in his lungs unfortunately. This is the first time he has cultured 2 bacterias! He is growing...Haemophilus influenzae and Staphylococcus areus sensitive to Oxycillin(MSSA). They say he has grown these before, and that there is no changes at this time. I know it's not contagious, but I wish I really knew what these were and what they meant for Lil' Chris. It's not something they treat, but as a mom, I wish they would or could get rid of it. No mom wants their kid growing bacteria in their lungs.

M

PS. Donate today to help find a cure for Lil' Chris and all CFers by clicking on the Great Strides box in the upper right hand corner! Thanks.

Swine Flu and Cystic Fibrosis

First bike ride of the year!!! He had a BLAST!!

Ayla is just too cute with those raised eyebrows;-) She has a doctor's appt. today at 1:30. It's going to break my heart to see her get her shots;-( I'm going to ask the pediatrician if they will do Pin-ups or something for CF. Hopefully they will.

Thanks to a new CF mom I met on Facebook, I was directed to this site that talks about the Swine Flu and CF....http://www.cff.org/LivingWithCF/StayingHealthy/Germs/SwineFlu/

I think it's great that the CFF is keeping up on this. I heard about it on TV the last couple of days, and then when I went to work yesterday....that was all everyone was talking about! We had a truck of merchandise come in and we were told to make sure we wash our hands if we handle any of the plastic or boxes that come off that truck. Some of the merchandise comes from Mexico or something. So what did I do??? Tried to stay clear and I clipped my handy dandy hand sanitizer to my pocket! ;-) I think I may do this everyday! Everyone where I work knows how important it is for me not to get sick so I don't bring anything home to Lil' Chris. It is much appreciated!

Check out the article, and I will keep you updated if I hear anything new,

M

Dr.'s Visit, 300th Post, & 1 Year Blog Anniversary

Guess what?? Today is my one year anniversary for blogging!! My sister D started this blog for Lil' Chris exactly one year ago today on March 18th 2008! Thanks to her starting this blog and her encouragement, I have learned soooo much for Lil' Chris, and I have made soooo many new wonderful friends=) You truly are all like family to me now:) Thank you all for all your prayers over the past year. It definitely has worked as Lil' Chris had a GREAT year!! We can't thank you enough also for all the donations to our Great Strides Walk last year and to Lil' Chris' medical fund. It will all go towards good use! Speaking of Great Strides, we are doing a fundraiser on Sunday 3/29 at CiCi's Pizza from 5pm-8pm. I hope we get a lot of people to come, b/c a percent of their receipt will go towards our Walk. I'll let you know how it goes:)

Guess what else?? This is my 300th post!!! How exciting!!! For a shy girl, I sure can write a lot;) lol.

Today both kids had a well visit at the pediatricians. Lil' Chris weighed over 26 lbs. and is over 35 inches long. His weight is in the 50th percentile and his height jumped up, but not sure what percentile. He had to get one shot today:( Poor thing:( He did such a good job though, so we took him out for lunch and then to the park afterwards, since it is like 70 degrees out! He did such a good job in the dr.'s office! We don't let him touch anything and my husbands waits with him out in the hallway until his name is called. I got some good pics of him looking in the window into the waiting room where I was sitting with Ayla. It was so cute! He got weighed like a big boy on the big scale for the second time!! And he got to wear a gown for the first time! He looked sooooo cute! I took lots of pics of him in his "dress" as my husband called it:) lol.

Ayla weighed over 10 lbs. and is over 23 inches long. Her weight is in the 75 percentile!! Not sure about her height, it was good though. Here eye is all better, but the tearing from the blocked tear duct that she had last week could come and go over the next 6 months. That stinks! But we only have to press on the corners of her eyes when it keeps tearing a lot.

Here are some pics of the kids at the dr.'s, at Wendy's, and then at the park. At Wendy's, Lil' Chris was dipping his nuggets in Ranch dressing and sucking it off! Sometimes he would just dip his fingers in it and then suck it off! That lil' container was dry by the time he was done! I guess we'll have to do that more often! I'm so glad that he is eating more table food now. He'll eat luch meat, cheese slices, string cheese, meatloaf, pizza, nuggets, chicken, french fries, taco, yogurt, apple juice, sometimes chocolate milk or whole milk, cereal, crackers, gold fish, and I'm sure there is more I'm forgetting. So he is getting much better. What I do is give him this kind of food first, then give him baby food jars too(esp. if he doesn't eat a whole lot) to get more calories, as his lil' body needs them. The dr. said that this is perfect! Normally she would suggest just table food at this point, but b/c he needs all the calories he can get, she said to keep doing what we are doing.

Enjoy the pics=) Sorry it is unedited, I have to go to work now:(
M

Help save lives. Make an on-line donation to www.CFF.org

Ayla is 6 Weeks Old, D's Visit Pics, & Clinical Trial Video

Wow, where did the time go? My lil' girl is 6 weeks old today! It seems like yesterday I was still pregnant! She is doing GREAT!! Thank God!!

In the past 6 weeks, we found out that she doesn't have CF and she is gaining lots of weight and is learning so much! When we went to the dr.'s yesterday, her weight was 10 lbs. 7.5 oz.!!!! She gained 3 lbs. in 6 weeks!! She is now drinking 4 oz. of formula only, since I have to go back to work on Monday 3/16:( and she still only sleeps 2-4 hours:(

I've noticed a lot of differences between her and her brother when he was her age, I guess b/c of the CF. I never realized what a spit up baby Lil' Chris was until I had Ayla. She doesn't hardly spit up at all!! We could never burp Lil' Chris over our should, b/c of the fear of him spitting up(actually, now I realize it was more like throwing up, lots of carpet scrubbing:(. Lil' Chris couldn't take powder formula, b/c it would make him throw up more. We always had to use the concentrated cans which are very expensive!! Thank God for secondary insurance! Ayla takes the powder formula with no problems. I never realized how much easier powder formula is either! Another funny difference, Lil' Chris used to pee all over us all the time, Ayla hasn't peed once while changing her, since we got home from the hospital that is!! It's kinda funny that Ayla got her first cough and cold way younger than Lil' Chris did, and he's the one with CF! Go figure.

They both have a lot of similarities too though. They both had great neck control early on, both love baths, both look a lot alike, and they both love to smile:) I've noticed sometimes when Ayla spits up, she spits up like Lil' Chris used to at that age...arch back, straighten limbs, spit up comes out of mouth and nose, and then the screeching lil' cry afterwards that just breaks your heart. Maybe all babies do this, IDK.

Here are some pics of Ayla and Lil' Chris today. Lil' Chris did a good job keeping Ayla occupied while I watched Y&R. LOL;) She loves attention from him and he loves giving it to her(although sometimes he can be a lil' rough;)

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

As for an update on how they are feeling, Ayla's eye stopped tearing and getting all goopy at about 10pm last night. So the pressing that the dr. did earlier that day really worked! I'm glad I called and took her in before it got worse and turned all red. Lil' Chris is still coughing. He doesn't cough all the time, but when he does, it's pretty nasty sounding. He didn't have such a good day today. I tried giving him a new high calorie drink today, and about 3 hours later, he started throwing up like he used to when he was little. We have connected all the dots and realized that all those times he used to throw up like this was b/c of trying these kinds of new drinks...and guess what they all have in common.....SOY PROTEIN! Yup, he must be allergic! So now we know to definitely stay away from it, b/c he throws up on and off for about 3 hours after drinking it. Right now he is sleeping, b/c he is so exhausted. It drains the life out of him:(

On a happier note, here is a great video of a CF girl who does clinical trials to help find a cure for CF. Is anybody else doing any trial? I was never sure how I felt about letting Lil' Chris do them, but this girl has such a great attitude about it! Plus Carmen, Charmain's daughter, has been a great inspiration too! I just hope Lil' Chris grows up to be as caring for others as these girls are:) Click here for the video. A BIG THANK YOU TO ALL WHO PARTICIPATE IN CLINICAL TRIALS TO HELP FIND A CURE!! If it weren't for people like you, our CFers would no be where they are today!

Here are the pics from when my sister D visited that I promised. My favorite pic is the one where Lil' Chris wanted to wear the clothes that D brought for Ayla. So I tied one around his neck and then I tied the pants to his one leg and then put a headband on him:) He loved it and kept it on the whole time we were going through the bags of clothes! Good thing I have a little girl now to play dress up, huh Honey?!?

Make an on-line slide show at www.OneTrueMedia.com

Cough Update & Ayla's Eye Dr. Visit

Lil' Chris of course hates the Ceftin. It is soooo goopy! It takes forever for it to even flow down the spoon thingy to go into his mouth. And when I finally hold him down and force it in, it looks like nothing even came out of the spoon thing!!! It's so frustrating! I hope he is getting enough. The nurse had told me on the phone the other day that it would be 7 ml 2 times a day, but when we got the bottle it said 3.5ml 2 times a day(which makes 7 total for the day). So who is right??? I was going to call the clinic today to make sure, but just now remembered with everything going on today, and now they are closed. Hopefully he is getting enough and it knocks this cough out of him, b/c yesterday it seemed to have gotten worse, and now today it still doesn't sound good. Oh yeah, his nose is STILL running! My nose stopped running yesterday and I guess I just expected his nose to stop too since he got the cold before me, but it hasn't yet. Hopefully he'll be all better soon:)

As for Ayla, her nose doesn't run, but after laying down for a while, you can hear the stuffiness in her nose. Then we try to suction it out, but it's like there is nothing there! It's confusing. She also seems to have a little cough too. It's so cute sounding! I had never heard a newborn cough before! Anyway, I called the pediatrician this morning, b/c all day yesterday her right eye kept tearing. Then when she woke up this morning, she had goop in her eye and eyelashes and it was still tearing. So we had an appointment at 1:20 today and the Dr. said that she has a "blocked eye duct". She said that a stuffy nose can sometimes cause it. She gave me a prescription for some eye drops, but said not to use it unless her eye gets red. For now, all we have to do is keep the eye clean by wiping the gook out and also we have to press on the inside corners of both eyes once a day to help the blockage. Hopefully this makes it go away before it gets red and we have to resort to the eye drops.

Then...I had to play my Y&R trivia on fb;)...I told ya I was busy today...then I had to go to my OB for my 6 week check up. I can't believe it has been 6 weeks already!! She said all is good and I can go back to work. So unfortunately I have to go back on Monday:( I'm going to soooo miss my kiddos:( But I know we have a GREAT babysitter and she will take GREAT care of my kids:)

Tomorrow I will post Ayla's 6 weeks pic and my sister D's visit pics:)
Have a great day,
M

2 Weeks Old

I can't believe it has been 2 weeks since my lil' Ayla was born. She is growing up too fast already:(

Here is a pic of her enjoying a nice lil' nap in her new crib...

I forgot to tell you...I called our Pediatrician last Friday to ask her about a rash that Ayla got on her bottom, and since I had her on the phone, I asked about the one abnormal chromosome that Ayla had and what that meant. She said that I must have misunderstood her. Ayla does NOT have an abnormal chromosome. So she is NOT A CARRIER!!! YEA!!! PRAISE GOD=)

M

PS. BTW, the rash is gone;)

Ayla's First Dr.'s Visit

Getting ready to go to the doctor's. She is making the cutest lil' funny face=)

Ayla's first time out...

Today Ayla had her first pediatrician visit! It went really well!! She weighs 7 lbs. 8 oz. and is 20 inches long. The nurse was pretty sure it was 20 instead of the 19.5 like they said in the hospital. The lady in the hospital was kinda new or something, and I had a feeling she was longer.

The doctor said that we should hear the CF test results by the end of the week. I will let you know as soon as we find out. Hopefully it's good news and we aren't rushing to the CF Clinic. She didn't seem to suspect any CF at this time, but it is still a little too soon to tell. I told her that I have been keeping track of everything to see if there are any signs of CF. I also told her that if I suspect CF, I would start giving her half a capsule of enzymes with applesauce before some of her bottle feedings. If I really suspect it, then I'll do it before every feeding. She was fine with that. I told her how I had talked to the CF clinic beforehand, and they said that the enzymes won't hurt her if she doesn't end up having CF. I say it's better to be safe than sorry.

I took this pic with my phone and text messaged it to my sister D , my husband, and my friend Christi while we were waiting for the doctor to come in. She is all naked wrapped up in a thick warm blanket. My sister D said that it looks like an Anne Gedes picture:) Maybe I should send it in and she could be on a calendar or something;)

The doctor also said that she didn't see any signs of jaundice at all! So that is GREAT news!! She wasn't the one that checked her out at the hospital, b/c she was away at a conference near San Diego. Actually she said that she was thinking of us when she was away! She was walking on some boardwalk shopping in some of the shops, when she came across a Surf Shop. She was buying something for her daughters and got to talking to the owner of the shop. Somehow they started talking about a book that she is writing to help raise awareness for CF! Instantly she thought of us she said. She took her card and said she would give the info to me and her other CF patients and to the CF clinic here. She made me a copy of the card and gave me her web site. If you want to check it out, it is http://www.surfangelbook.com/.

The book will be out next month. It talks about the owners daughter(I think) who is in her 20's and has CF. It gets awareness out about CF and how the salty air there helps her to breath so much easier. Then I told her about the salt air purifier that I found on line and it is supposed to really help CFers. And I told her about a blog that I read and how Michael is 24 and got one of these salt air purifiers and explained how much it has helped him to breath easier. (Click here to see how it has helped Michael.) The doctor asked if there was a way we could add saline to a nebulizor. She thinks that it could be done. I told her I would ask the CF clinic. Does anybody know if this is possible???

As she was finishing checking Ayla out, she said to Ayla..."We're going to get that book for you and your brother, Lil' Chris." She is the sweetest doctor EVER. She was telling me that she admires me. She admires how well I take in all the CF stuff. At the end of the visit, she even asked if she could give me a hug. She is so sweet and has a great heart :)

She said that Ayla looks GREAT!! She just wants to do another weight check on Monday 2/9 to see how her weight is and to see if there are any signs of CF, if we don't get the results before then. She said if I suspect a huge weight loss, then I can schedule a weight check sooner if I want.

Home again...

Overall, it was a great visit:) I hope all will be like that for Ayla=)

M

PS. I will post the winners later...I haven't forgotten;)