New CF Mom Blog / CF Update on Lil' Chris

I met a new CF mom today, so I thought I would share her blog with you all. She has a 7 month old with CF. Her daughter's name is Caroline Josephine and she is just the cutest thing!! She just cultured Citrobacter Fruendii and Psuedo. She could really use your prayers.

So come on CF Community!!! Let's pull together and give her some bloggy love:) Stop by, say Hi, "Follow" her blog, and keep her in your prayers along with all our other CF buddies!!

Click here to go to her blog.

Thanks,
M
PS. Lil' Chris is STILL coughing. The medicine is getting lower in the bottle....praying his cough goes away before the Bactrim is done.

Hit 800 HOURS on the VEST on Valentine's Day!!

I can't believe my lil' boy has wasted 800 hours of his life doing his Vest treatments!! Erks me, but when I think about how much it helps him, I don't mind as much;) He's getting more and more into playing his DS games now as you can see in the pic above;-)

He actually hit 800 hours on Valentine's Day!! The day before Valentine's Day, the kids and I made cards for Daddy by doing paint hand prints:) Then while I was working on Valentine's morning, they made cards for me with Daddy:) We had a fun day once I got home from work. We opened cards and presents, then played with Big Foot(one of Lil' Chris' presents;) He was a little scared of it...well, he still is scared of it, but he loves it tho;) LOL!

Then we made Valentine cookies!! The kids had a blast helping!! Daddy...not so much, but he helped anyways;-) LOL! They turned out pretty good!!

After that, we went to go watch Daddy play his last indoor soccer game! Spencer gave us all Valentine's;-) Thanks Spencer!! The kids had fun playing and running all over esp at half time when they got to go out on the field. I always feel bad taking them out there, b/c then the guys feel like they can't practice. They are all nice and let Lil' Chris shoot some goals:) Thanks guys!! Daddy signed up to play another session that starts next week!! YEA!!

Photo and video editing at www.OneTrueMedia.com

Chris and I celebrated Valentine's Day the day before by going to dinner and a movie!! We saw "Just Go With It" with Adam Sandler, it was great! It was sooooo nice to get out and go on a date with my man:) I wish we could have date night like once a month or something, but our schedules are always weird and I feel bad asking Oma and Opa to babysit even more than they have to. Thanks Oma and Opa for always babysitting!! Special thanks to Oma for helping out with some vacuuming and cleaning too since my back has been hurting:)

Speaking of my back....it's a lot better than what it was, but it still hurts when I lift heavy things or move or bend certain ways. At least I can sleep a little bit better and don't have to grab onto my treadmill when I get out of the bed anymore;-) LOL! I think my back is getting better b/c I haven't been doing as much lifting and I have been stretching and icing it. The Vest machine alone weighs 30 lbs, so I had stopped lifting it up and down, that seemed to help. Now if only Ayla didn't need to be picked up all the time;-) LOL!

Lil' Chris has been doing good with taking his Bactrim. His cough is still def there tho and sounds nasty. I hope it goes away before he is done the Bactrim. BTW....in my last post I posted a video of him coughing....well, I forgot to mention that he was chewing his Chewable Vitamax vitamin when he was coughing, so he didn't actually cough something up and then started chewing on it;) I know it looked that way and I forgot to say something. Sorry to those who watched it and was totally grossed out;-) LOL

Please say a prayer that Lil' Chris' cough goes away and that his cousin Nathan with Leukemia gets better. Nathan just got out of the hospital and has RSV. His counts are low, so he needs a lot of prayer to get them back up.

Thanks,
M

Cough Video / $125 CF Survey

I'm gonna try to keep this short, but no promises;-)

I didn't post about it before, but Lil' Chris had a bad night the night before Ayla's birthday. We think it was the Chex Mix that he had. That was the only thing he ate that was different. He threw up about 5 or 6 times and was just laying on the couch from nap time to bed time.

Then this past Wed, it happened again! He didn't have anything new, so we still are not sure what caused it this time. He was fine all day, then when he woke up from his nap he was complaining of his head hurting right above his right eye. You could tell he was in a lot of pain, b/c tears were just coming down his face. I felt so bad for him esp since I didn't have any children's Tylenol in the house and I was just about out the door to go to an A-team event for Kohl's(Woo after School Skate Club). I told Chris to go and pick some Tylenol up when Ayla woke up, but he never got to b/c Lil' Chris started throwing up. The A-team event (actually it's called Associates in Action now) was for 3 hours. So afterwards, I called and Lil' Chris was sleeping on the couch, which NEVER happens, and his head still hurt and was throwing up. So I picked up some Children's Tylenol on my way home. He took it, but then threw up, so not sure how much actually got down. He did seem to start to feel better about an hour later though after a few more throw ups. He didn't eat or drink anything though, and we didn't do his Vest just like the night before Ayla's birthday. That's usually the only time I don't make him do his Vest. I don't want to stir anything else up...if you know what I mean;-) He slept good throughout the night other than asking for a drink of water, which I was more than happy to give to him. The next day, Oma said he was still complaining of his head hurting. She gave him more Tylenol before I got home from work and his head seemed better. He was complaining of a bellyache tho, but not for long. We have clinic on March 16th, so I'll have to ask the dr about all of this.

To top it all off....he has had a wet cough for over a week now. I sent a message to the CF clinic about his cough through My Chart. Does every clinic use My Chart??? I LOVE it!! I can send them messages, ask questions, see his chart, see his upcoming appointments, see his throat culture results, and more!! It's a GREAT tool that they added recently. Anyways, to make a long story short....he is started Bactrim last night, 10ml for 2 weeks. Since he was on Augmentin a few weeks ago for an ear infection, he couldn't go on it again, so that is why he is on Bactrim instead. He doesn't seem to mind it tho.

Photo and video editing at www.OneTrueMedia.com

To all my CF buddies...email CF_Panel@wwmr.com to sign up to earn some extra money while helping out the CF community, or you can call 1-888-947-2339 extension 112 for Michelle Nordstrom. So far I have raised $525!!! WooHoo!! You get $50 just for joining!! Please mention you heard about the study from me, Michelle Neher, and I'll get another $50!!

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

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

Please pray Lil' Chris' cough goes away quickly and that it doesn't turn into anything serious.

So much for keeping it short;-) LOL!!
M

Ayla's 2nd Birthday Montage!!! YEA!!!!

I can't believe that my lil' angel turned 2 yesterday!!

HAPPY BIRTHDAY AYLA!!

2 years ago at this time I was in the hospital holding my lil' newborn angel. Ayla truly is an angel from God. Chris and I thought we would never have anymore kids after Lil' Chris was diagnosed with Cystic Fibrosis, but God had other plans for us. We are sooooo blessed to have her in our lives!! God truly blessed her to not have Cystic Fibrosis. I believe she will be Lil' Chris' angel as they grow older, esp when Mommy and Daddy aren't around. She will help guide him in the right direction with all his meds, his exercise, and his relationship with God.

We had a great day yesterday with a few exceptions of the terrible two's starting already;-) LOL! I had off work, so we spent the day playing and then after nap the party began!! Oma and Opa came over and so did our friends John and Andrea and they brought their 1 1/2 year old "niece" Reese. She is such a cutie pie and the kids had a BLAST running around and playing:)

We had dinner, cake, and then Ayla opened all her presents!! She did a Great job opening her presents, Christmas was a good practice;) LOL! She got lots of fun toys and she got her first pair of high heels;-) That's right....I said heels!! LOL! All the kids had fun playing with them...even Lil' Chris...not too sure Daddy was too happy about that tho;-) LOL!!

Today we had so much fun playing with all the new toys! All the toys HAD to wear the tiara;) LOL! Lil' Chris liked playing with the barbies....shhhhh....he liked playing with the wheel too, that's boyish;-) Ayla really liked playing with all the princess stuff and wearing her high heels:)

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

Here's what Ayla has been up to lately:

1. She still loves to suck on her right pointer finger and cuddle with her blanky when she gets sleepy
2. She loves her bear(actually is was Lil' Chris' bear). She calls is "Ba Bear" ???
3. She loves to pull out the bears hair, it's got a lot of bald spots;) lol
4. She repeats pretty much everything you say to her but makes it into a question by making her cute lil' voice go up at the end;-)
5. She loves baths and doesn't mind the water in her face
6. She hates getting her picture taken and will put up her hand or just run away
7. She has wild crazy curly hair...not sure where she got that from;-) lol
8. She has gotten her bangs cut 2 times now...still trying to grow out the rest
9. She loves to sit on my lap and watch TV and screams if Lil' Chris beats her to it;)
10. Her weight and height is 26 lbs and 35 inches!!
11. She loves to play and run around with her big brother
12. She loves to eat
13. She LOVES apple juice
14. She says lots of words, but sometimes she doesn't say the end of the word, like for "hot dog" she'll say "hot do."
15. She can do "angry eyes" very well .... and often;-) LOL
16. She has the cutest lil' smile!!
17. She is very lovable and snuggable:)
18. Lately she likes to be rocked to sleep...shhhhh don't tell Daddy I do that;-) LOL!
19. She calls Lil' Chris "Ca" like car without the r. She says it so much that she even has me saying it too sometimes!
20. She's very polite and always says "thank you mommy" or "your welcome Ca" or "Bless you Mommy" even if I'm in the other room and I sneeze:)
21. All I have to do is say the word "remote", and she runs and gets me the TV remote;)
22. She LOVES to copy everything Lil' Chris does or says;-)
23. She is growing like a weed!! She has been wearing 2T and 3T shirts and is in 24months or 2T pants!!
24. She listens for the most part. If not, you start counting to 3 and she does whatever it is;)
25. She is very considerate of others. If Lil' Chris falls or if anybody says "Ouch" she says "You okay?"
26. She usually goes to bed around 8pm or 8:30pm and then wakes up around 8am or 8:30am
27. She takes one nap a day usually from 1-3 or 4. Until recently(with the terrible two's coming;) she would usually go down for nap or bed no problem. The last few days, she has been doing what Lil' Chris does and calls us to come in there;( ARGGGG!
28. She just learned to turn the door knob and open the doors
29. She takes good care of her big brother already. When his Vest is done it's 30 minutes, she calls me until I come and take it off of him while she helps me:) She even tells him to take his pills sometimes;) "Take your pills Ca!"
30. The best part is....she has been very healthy these last 2 years! PTL! I think she was only on an antibiotic once and that was recently for a little bit of fluid in her ear and a slight cough. I can't complain about that!!!!

I hope you enjoyed the montage...sorry it was so long, but my back hurts enough after sitting here typing all of this;-) LOL!

HAPPY BIRTHDAY AYLA!!

Love,

Mommy

Update / Cancelled Vacation=Skiing and Kalahari!!

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

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

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

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

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

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

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

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

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

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

Have a GREAT week!!
M

25,000 Hits!! 3 out of 4 on Augmentin;-(

My silly kiddos:)

WOW 25,000 hits!!! Thank you all so much for checking in on Lil' Chris every now and then!! I don't know what I would do without this blog sometimes. It's gotten me through some good and some bad times. Thank you all who have helped me out in some way:) I LOVE ALL your comments, esp advice from my fellow CF moms and dads and CFers;)

This blog is great for uploading pics and videos and also great for when I want to look back and see when Lil' Chris had a cough or cold last, and what antibiotic and such! That's what I mainly use this blog for anymore. It used to be more of a therapy blog for me, but lately it's been to keep a record of everything that is going on with Lil' Chris. For some of my older readers, you could probably tell;) Ever since I joined facebook, I've gotten a lot of new readers...family, old friends, co-workers, and such. I guess I used to be more comfortable spilling my guts and feelings back when it was just other CF mom readers who knew exactly what I was going through and what it was like.

That's ok though, I barely have time anymore and the time I do have, I want to spend it with Lil' Chris and Ayla. Also, my back has still been killing me and it hurts to sit at the table and type....yeah...I'm in pain right now;( LOL! I went to Sam Wanna spa yesterday and got a back massage hoping it would make my back feel better, but it didn't do the trick. It helped a little I thought, and then my hubby finally gave me a massage to help it too, but when I woke up today it seemed to hurt worse;( GREAT!!! Oh well. I guess it's time to go see a doctor. It all started from lifting heavy boxes of gift boxes at work in Nov and Dec. I guess I won't be doing that next year! I've learned my lesson....and it HURTS!!!

So anyways, Lil' Chris, Ayla, and I are all on Augmentin right now. Crazy isn't it?? Lil' Chris for his ear, Ayla b/c she has a little bit of fluid in her left ear and she was getting red spots on her body and she had a little dry cough, and me for a sore throat(which it wasn't even that sore and I wouldn't have taken it except I'm going to be around a baby soon;) I can't remember the last time I was on an antibiotic and got a throat culture!! I'm curious to see if I culture the same as Lil' Chris. lol

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Update: I just got the call that my throat culture IS the same as Lil' Chris' usual....Staphylococcus areus. They are going to call me back with the sensitive results, but Lil' Chris' is usually sensitive to Oxycillin (MRSA). We'll see I guess. They said that the Augmentin I'm on should do the trick since it usually works for Lil' Chris. I didn't know that we could share bacterias???? I thought only CFers could share, but I guess anybody can, it's just easier for CFers b/c their lungs are more sensitive.

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Hope you have a GREAT day!
M

PS. BTW, the spa day was sooooo relaxing and great!! I got a 1 hr massage, manicure, and spa pedicure!! Just what I needed!! Thanks Honey for that gift card from 2 Christmas' ago;-) LOL!! Thanks Oma and Opa for babysitting!

Ear Infection Update

To update you...Lil' Chris' ear stopped hurting the next day, so I'm not sure if he really had an ear infection or not. This was his first one, but I didn't think one dose was going to cure it. Does anybody else know?? Does it really work that fast??

He hasn't been coughing that much either. If it really wasn't an ear infection, I'm kinda mad at myself for taking him and getting an antibiotic for him, b/c the more he's NOT on an antibiotic the better for him. Oh well. Now next time he gets a cough they will probably put him on something really gross and he won't want to take it;( Ughhhh

Everything else is good, he's been sleeping through the night and everything. Me on the other hand....I just wish I could get my back to stop hurting!!!!! It's been hurting for almost 2 months now and I know I just need a good back massage, but my hubby just laughs at me whenever I ask him for one;( Any takers???? :) lol
M

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