CF Update / Bad Virus or something???

TOBI arrived Wed evening, but we didn't start it til Thurs morning. He has been doing great with the TOBI, but he HATES the cipro pill b/c it is chalky. I hate Cipro b/c he can't have any milk or cheese 2 hours before or after taking it...I'm sure he hates it b/c of that too;p The reason is, b/c it makes the Cipro not work as well apparently.

Thurs he came home from school with some kind of virus. I was very worried it was the flu, but thankfully it seems like it was just a 24 hour bug or something. He had a very bad headache in the middle of his forehead, a sore throat, and a bad tummy ache. He was just lying around with no energy. Then around 6pm he started throwing up off and on until 11pm. He was throwing up like he had Soy Protein which he is allergic to, but he usually doesn't have the other symptoms with it, so we aren't sure what he had. Today he seems fine. He took all 8 pills and ate his whole bowl of cereal and has been running around playing with Ayla!! Then he did his Albuterol, Vest, and TOBI. For some reason, the TOBI seems to be taking a lot longer this time than it did a couple months ago. Not sure why, it's the same dosage. Maybe the setting on the machine got bumped. I'll have to check it out.

I almost took him to our Pediatrician yesterday, but our CF clinic(by the time they finally got back to me) said not to take him b/c it's too dangerous for him b/c he could pick up something worse. I almost still took him, but he refused to go and I thought maybe that was a sign. So I didn't take him and I am sooooo glad I didn't b/c he is doing so much better!!! Who knows, if I would've taken him, he could've picked up the flu that's going around like crazy and then possibly end up in the hospital. Good thing Lil' Chris knows his body;-)

Unfortunately Ayla is complaining of a sore throat today, so I'll have to keep a close eye on her:(

I have soooo much to do to get ready for the walk and fundraising!! No better place to make a list than on my blog, right?? LOL...

1. I have to make a new fundraising video or at least update my old one;p I've used that one like 3 years in a row, so I really want to make a new one, but it's so time consuming, so we'll see. 
2. I also have to start working on the 30 second CF commercial for Clear Picture. So far I have pics from Denna with Aden doing his treatments. Thanks Denna!! She is really on the ball!! I still have to take a few pics of Lil' Chris;)
3. I have to get all the food nailed down for the walk...Dominos, McDonald's, Panera Bread, Frito Lays, Buehler's fruit, and ice from Speedway.
4. I have to contact the radio stations
5. I have to nail down some of the entertainment for the walk...Dr Dave who makes the best balloon animals and Pat Catan's for a craft table. 
6. And most importantly...I have to raise money for a CURE!!

Samantha, Denna, and Alma are doing a lot to get ready too...
Samantha is going to contact the police dept and fire dept to try to get a police car, ambulance, and fire truck for the kids at the walk. She's also going to contact the newspaper to get an article about the walk. Try to get water donated for walkers. And Samantha, Denna, and I are working on getting prizes for the walkers:)  Alma is going to make her WONDERFUL cookies again and maybe some of her famous cupcakes too;) She is also going to try to get water and soda donated. The 4 of us are also going to try to put together some signs, one for each of our kids to put up around the walking path with info about our kids and their pic on it:)

So, lots to do and only 3 months to do it!!! It's going to be soooo much fun!!! I can't wait!!

Sign up to walk today and if you can't walk, but would like to sponsor me, click this link as it is 100% tax deductible and will get us one step closer to a CURE for Cystic Fibrosis...

http://www.cff.org/Great_Strides/LilChrisChris6765

 
Thanks for your continued prayers that Lil' Chris kicks this Pseudomonas out!!!
M

Bad CF Update:(

I've wanted to post since Fri, but just haven't had the time...and my laptop is super slow and I can't stand it;) LOL

Anyway, after I posted my last blog post on Fri, I called the CF clinic, b/c I realized I had not heard about his throat culture result yet. So of course...I never get to talk directly to the CF nurse, so I had to leave a message and then I had to go to work a couple hours later for the rest of the night. Wouldn't you know, when I got done working there was a voicemail from a CF nurse saying that we should stop the Omnicef and consider continuing the Flonase(we had stopped this b/c he got a bloody nose and didn't seem to need it anymore), and that she wanted me to call her b/c he cultured "something new" and they would like to treat it and it was "not an emergency". So of course we had to wait ALL weekend til they opened back up on Mon(today). Ummmm really?? That's just not nice to make us worry ALL weekend!! Meanwhile, I get a call from CVS saying that he had a prescription to pick up(it was automated and I just thought that it was old or something).

Today at work was just CRAZY and I totally forgot to call the CF clinic....I know...mother of the year award! LOL Anyway, my favorite CF nurse had luckily left me a voicemail, b/c I worked from 6a-5p so they were closed when I got done work. The voicemail confirmed MY WORST FEAR...he cultured PSEUDOMONAS AERUGINOSA:( You've probably heard me refer to this bacteria before...it's NOT GOOD for CFers!! It's a bad bacteria that is hard to get rid of and I think the only meds to help get rid of it are Tobi and Cayston. So once a CFer becomes immune to those drugs, then things really start to go downhill.

They are putting him on Cipro(white pill) 2 times a day and Tobi (inhaled like his Pulmozyme) 2 times a day. So there actually WAS a prescription at CVS...again...mother of the year award;p LOL  I've heard that Tobi tastes REALLY BAD, so not sure how this is going to go over. I guess we'll find out tonight. First I'm gonna call a fellow CF mom to see what order it needs to be done it. I forget. I think it's Pulmozyme, Tobi, then Vest, but it could be Pulmozyme, Vest, then Tobi??? When he takes the Cipro, he can't have any dairy products with it:( He will be on Cipro for 21 days and on Tobi for 28 days.

I don't know a whole lot about Tobi, but from what I've heard, they usually have to do 28 days on, then 28 days off(so like every other month) until he cultures no Pseudomonas 3 times in a row. Please pray that it works the first time!!

You may be wondering where he got Pseudomonas from?? Well, it's a risk we take every time we take him outside our front door. We try not to let CF rule our life, so we let him go to Kindergarten and we take him with us to go shopping, and we LOVE to go on vacations to Disney or water parks, or anywhere fun:) He LOVES them all! So, he could've picked it up anywhere. Pseudomonas also grows in standing water. You know, my biggest fear about him starting an inhaled med like Pulmozyme, was that we wouldn't sterilize it well enough or something, and he would grow Pseudomonas. Again, still unknown how he got it. It could've been from any of the above OR maybe he was around another CFer and didn't even know it??? Like I said, it's a risk we take every day.

I've tried to put a positive spin on it though for his sake. When I picked up the meds, I said "Wow! Look Bud! You get to do TWO nebulizers now!! It's that AWESOME!! And you get to take a new pill too!! YEA!!" ....if only he knew:( :( :( :(

On top of all of this heartbreaking news....he has a sore throat again:( I REALLY hope and pray he is not getting another cold.

I'll try to keep you updated as best I can. I don't always get on the laptop and for some reason I can't blog from my new phone.

Thanks for your continued prayer...it's especially needed now.
M

CF Update / Prayers Needed!!

Thought I'd give a quick CF Update. Lil' Chris is doing GREAT!!! No coughs right now, which is FANTASTIC!!! But, this morning at breakfast, he was complaining of his throat hurting and his forehead hurting. It hasn't slowed him down though, but he wouldn't eat his toast and lots of butter:( I'm hoping and praying it doesn't turn into anything.

He has regular CF clinic check-ups every 3 months, and his next one is scheduled for 10/24. Please pray his lungs are clear, his throat culture is normal, and he does great on his PFT test.

As for the Pulmozyme, he is still doing a GREAT JOB with it!! We do this nebulizer every morning at the start of his Vest. It only takes about 5 minutes, since we have a very powerful machine:) The sterilizing isn't as bad as I thought it was going to be. We wash each piece with soap and water and then put them in a bowl of hot water and put it in the microwave for 6 minutes. Then we take them out and place them on a paper towel to air dry and we put a paper towel over it too.  The only thing is....we sometimes forget it in the microwave and it sits there for awhile, then we have to re-do it. LOL

Remember when I posted about a little girl named Chaia who had heart problems and a rare genetic disease? Well, can you believe it has been 1 year and she is doing Great?! She still has a long road ahead of her, but she is def a fighter! Please keep her in your prayers as well. 

Phennyman could still use your prayers as well. Poor lil' guy has been going in and out of the hospital too much! :(

Tricia, Nate's wife who has CF, has been having a very hard time breathing lately. She is about to get on the list for a 2nd double lung transplant soon, I believe. Please keep her and her family in prayer. Lil' Gwyneth is doing Great, but I'm sure it isn't easy seeing her mommy suffer.

Thanks for all your prayers!
M
PS. I FINALLY got my new iPhone 5, but I haven't figured out how to post pics on here yet from it. As soon as I do though, I'll post the pics and video's from Lil' Chris' first basketball practice. Guess who his coach is?? :)

1st Time with Strep Throat / Old Videos:)

Well, Lil' Chris got Strep Throat for the first time last week ;( It started Sunday night with a sore throat. Monday morning(9/17/12) at 7:15am, he walked into our room and started throwing up in our doorway...yeah...we thought it was pretty gross too! 

He threw up off and on the whole day and wouldn't eat, saying his throat hurt, his belly, and his head hurt. His fever got up to 100.2 and we gave him kids advil, which helped take down the fever. He would drink water though, which was good so he wouldn't get dehydrated. By the end of the day, he couldn't even sit up to put his pj's on. He was just wiped out! I felt so bad for him, we almost took him to the hospital. 

The next day, he threw up 2 more times, but then started eating a little bit, even though he was still complaining of a sore throat. On day 3, Wednesday, I took him to the pediatrician, b/c he still had a sore throat. The dr right away was like..."Oh yeah! He's got Strep Throat!" I never knew all these other symptom came with Strep...well, now I know for next time. 

He was put on Amoxicillin for 10 days, 2tsp twice a day(he is almost done it now). This is the first time he has been on this. He is usually on stronger stuff. He took one dose that day and when he woke up on Thursday...his throat was all better and he was back to his normal self!! Praise God!! He still had to stay home from school tho, b/c you have to be on the medicine for 24 hours with Strep before returning to school. So he missed 4 days of school that week. 

So that makes a total of 5 days he has missed since school started. Not bad, it could've been worse. I'm just glad he is all better!! His lil' cough seems to have gone away too! So maybe it was a blessing in disguise;-)

So far no one else has caught it in the house, but unfortunately Oma who babysits woke up this morning sick:( Please pray she gets better soon and it doesn't spread anymore!

Here are a couple of old videos that my husband found of the kids playing after Christmas. Lil' Chris was 2 and Ayla was almost 1. It's hard to believe they were that little!! Lil' Chris always loved his guitar!! Ayla shaking her head at the end cracks me up:) Enjoy...

Thanks for your continued prayers,
M

1st Nebulizer...Pulmozyme Video

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The above video is of Lil' Chris doing his very first nebulizer treatment!! Not bad for being a 5 year old CFer!! Most CFers start within their first year it seems like! He still doesn't even seem like he needs it, but from what I've gathered, it will only help him in the long run.

His first inhaled med is called Pulmozyme. It's purpose is to thin the mucus. People with Cystic Fibrosis produce very thick, sticky mucus that clogs the lungs and other organs making it harder to breathe. Pulmozyme helps thin the mucus, then the Vest helps clear the mucus out. After his Pulmozyme this morning, we did his vest about 20 minutes after, and I tried to get him to cough after the Vest, but it didn't seem to do much. I guess I was expecting a wet sounding cough that would produce mucus, but it was just dry. Not sure if this is a good sign or not.

I have always been a little scared of nubulizers with Lil' Chris, b/c I know it's very important to keep them sterile. If we don't sterilize them properly, then bad bacterias could build up on it and that would NOT be good for Lil' Chris. We were told to do it right after each use, b/c otherwise the medicine will build up on it and it will be hard to scrub it off. We rinsed it with hot water, then put all the pieces in a bowl and microwaved them for 5 minutes right after his treatment. Then when done, we shook the excess water off and let them air dry on a paper towel. We can not rinse them off with tap water, b/c that would defeat the whole purpose. I've been told that we could use a baby bottle cleaner, so I may have to pick one of those up;-)

This is all a new experience for us, so any insight would be much appreciated!! :)

Lil' Chris is doing GREAT!! He doesn't cough that much, but when he does, it is dry so that is VERY good!! A couple of weeks ago, he was waking up in the morning with lots of build up in his nose, but once he would blow a few times, he was fine. He complained of a sore throat a couple of days, and it got me worried he was getting a cold, but I guess it was just allergies. Thank the Lord!!

Right now, he is living it up having a blast on his Summer vacation, esp the last 4 weeks with his cousins!! Adding the Pulmozyme now will help him get into a routine for when Kindergarten starts this Fall. We decided to start the Pulmozyme this week, b/c I have off work this week and thought it would be good for me to be there with him for the first week so he can get used to it.

On another note...after my vacation this week, I will be going back to work on Mon 7/9 as an Assistant Store Manager of the Wooster Kohl's!!! WOO HOO!! I've finally been promoted AND within the same store!! I can't wait to get started, but this relaxing week with my loves will be so nice:) Thank you so much to all who were praying for this promotion and for me to get to stay at the same location. It really means a lot to me to get to stay so close to Lil' Chris and my family. Family time is so precious to me...to any family with a family member with a terminal illness. I'm just so glad I have the BEST DM EVER to promote me within the same store!! That almost never happens! THANK YOU JASON!!! THANK YOU LORD FOR ANSWERING MY PRAYERS!!

Have a GREAT week, I know me and the kids will...and Daddy when he has off work;-) lol
M

CF and Cough Update / Ayla 1st Time Sneaking Downstairs :)

We kept Lil' Chris home from Preschool today, b/c his nose has been runny and he has been sneezing a lot....oh and of course his cough got worse...argggggg!!!! Not sure if it's allergies or a cold yet. He did have a sore throat after school on Wed though. Please pray his cough doesn't get worse and he doesn't get any scarring or bad bacterias in his lungs. We are going to get his chest x-rays done next month, so we will see if they are still clear or not.

On a good note, Ayla has been getting out of her bed all by herself now!! YEA!!! She doesn't call us anymore to get her out!! WOOHOO!! Only bad thing is....in the morning she freaks me out by just standing next to my bed starring at me til I open my eyes!! Too funny!! Her brother used to do the same thing and still does sometimes:) LOL

At nap time she comes down all by herself too:) Above is the first time she came down by herself and peeked over the ledge, just like her brother used to and still does sometimes:) Click here to see the post of Lil' Chris' first time peeking;)
M
PS. I'm going to see Hunger Games tomorrow WOOHOO!!!! Can't wait!!! :)

CF Clinic Visit / New Acapella / 2nd PFT

Lil' Chris had his 3 month check-up today at the CF clinic and he had some GREAT RESULTS!!! THANK YOU ALL SO MUCH FOR ALL YOUR PRAYERS FOR HIM!!!

-Lungs were clear!!!! WOOHOO!!!!
-His weight has been stuck at 38 for the looooongest time and he finally gained some weight!!! He was 40 lbs and 2 oz!!!! I was completely SHOCKED!!! I actually made the nurse weigh him again to make sure;-) LOL I guess that eating sticker chart really helped him gain some weight!! I know it DID help him to eat more...he now eats pizza and chicken nuggets again!!! YEA!!! I couldn't believe it the other night he ate 2 WHOLE SLICES OF PEPPERONI PIZZA!!! WOW!! That's a first!!
-His height 3 months ago was 42 3/4, this time it was 43.5!!! Next Summer he will def be able to go on all the 46" rides if he keeps this up:)

He did his second PFT today and he did AWESOME!!! He blew a 94%!! Last time I think it was an 83%. He sure did make me proud getting up there and putting the nose thing on all by himself and just blowing away:) He did such a GREAT JOB!! Click here to learn more about PFT's. Ronnie shared some great info on his blog and did a video of him doing one. He is an adult CFer who recently had a sweet baby girl:) She is so adorable!! Congrats Ronnie and Mandi!!

His doctor said everything looks great and not to change anything!! So we are still going to do 3 enzymes before each meal and snack, 15mg of Prevacid each day, 1 Aquadek, Omega 3 + Viatmin D, Vita C, and Vest 2 times a day for 30 minutes each.

As I was asking the doctor all my questions;)lol, I mentioned the Acapella, and next thing I knew, they were bringing one in for him to try! The PT said that they usually start them on it around 5 or 6, but that she would try it with him and see how he did. To her surprise, he did GREAT!!! She said that some 4 year old's don't have the attention span or capability of following the directions, but he definitely did!! WOOHOO!! GO CHRIS!!!

I asked if he needs to do the Acapella after every Vest therapy, and she said not if I think he doesn't need it. It would be a good idea to have around in case I hear him rattling like he needs to cough something up but can't, or if we go somewhere and we can't take the Vest. For after the Vest, he would do 1-2 cycles of 5 breaths followed by 2-3 huff coughs to clear any mucous. If we use it instead of the Vest, then he would do 5 cycles of 5 breaths followed by 2-3 huff coughs. You'll see him do it in the video below.

I wasn't sure how his visit was going to go today, b/c on Monday he woke up with a sore throat and he was still even complaining of one today. The doctor said his throat looked ok though. He doesn't seem sick at all. His nose was runny the last couple of days, but today he blew it only once after his bath! Ayla was a little stuffy yesterday and today, but no hard core cold as of right now for either of them. I'm praying it doesn't spread anymore and that this cold or whatever it is goes away fast, b/c Nathan is coming next week and it would be dangerous for him since he is still on chemo. Pray for a healthy visit and that Lil' Chris doesn't develop a cough from it like he usually does after a cold!! I'll let you know when we get the throat culture result back, praying for a CLEAR result!!

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Thanks for the continued prayers and please don't forget about baby Chaia. She is doing well, but still has a long road ahead of her. Also, if you could say a prayer for Blake, a 3 year old who had a tumor removed today. He used to go to our church. The tumor was the size of a melon. Thanks so much!
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!

Santa Pics / Cookies / Snow / CF Update

Lil' Chris(3 1/2) and Ayla(23 months) getting their pic with Santa:)
Lil' Chris telling Santa what he wants for Christmas:)

My lil' Mrs. Clause;)

They are getting so big!!

Lil' Chris giving Ayla a hug:)

The other day I took the kids to get their pic with Santa at Walmart for free!! They did a really good job (even though you could tell they were a lil' scared;) NO TEARS!! YEA!! Lil' Chris actually told Santa what he wanted for Christmas!! I was SHOCKED!! I didn't think he would say anything....I felt like I was watching "A Christmas Story" when Santa asked him what he wanted for Christmas and there was that long pause.....then finally he said "A Robot!!" They had a whole bunch of the Alphie the Robot a few feet away, so he even pointed to it and showed Santa when he got off of his lap!! Too cute!! I was SOOOOO proud of him:)

Everybody kept saying how cute Ayla was in her Mrs. Clause outfit:) While we were walking around Walmart after their pics, all I kept hearing was "Awwww! Look how cute!!" It was so funny! A stranger even snapped a pic of her with his cell phone!! A lil' creepy, but I'll take it as a compliment for having such a cute kid;-) LOL!

When we got home, they took their naps(Lil' Chris woke up dry again:) so we made Christmas cookies!! They had lots of fun!! Afterwards they decorated them with these cool decorating markers!! They had a blast!!

Cool roller with different cutouts on it...

Decorating them with markers....

Finished product:)...(they tasted pretty good;)
This morning Lil' Chris was doing his Vest, but still wanted to watch Daddy get the snow blower out of the shed:)....

As for a CF Update....Lil' Chris was complaining of a sore throat all day yesterday and then threw up twice in the middle of the night. The first thing he said today, was that he feels better:) He said his throat doesn't hurt anymore. YEA!! Praise the Lord!! I just hope it stays away!

Thanks for all your prayers and keep them coming that we all have a healthy winter,

M