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?? :)

CF Updates on Lil' Chris & Phoenix

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

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

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

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

I'll keep you posted,

M

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

Cold & Cough / Send Phoenix a Card Please!!

Lil' Chris woke up yesterday and first thing he said to me was, "Alya's sick." I said, "How do you know? She's still in her crib!" Then the rest of the day HIS nose was running and he was sneezing a lot. Today he woke up and first thing he said was, "I have a cold." Poor kid;( He was coughing on and off throughout the night and he is so stuffed up. No one else is sick yet, so I'm going to try to keep it that way(like that's possible LOL;) Luckily I asked for boxes of masks last time we went to the CF clinic. I'm trying to get Lil' Chris to wear a child mask today so he doesn't get Ayla or myself sick. Poor kid, I know it's a pain when I get sick and have to wear one for a couple of days;(

Lil' Chris asked to take his mask off to got to the bathroom, and while in there he coughed and Ayla yells, "COVER YOUR MOUTH, CA'S!!" LOL!! I wonder where she got that from?? ;-) LOL

Please pray that he gets well soon and that it doesn't turn into anything worse, and that he won't need any antibiotics or anything. Also pray that no one else catches it, b/c their cousins Nathan, Lincoln, & Tyler are coming this Sunday for a whole week. YEA!! We don't want to get them sick tho, esp Nathan since he has Leukemia and his counts are low, so he is even more susceptible to germs;( We were all planning on going to Cedar Point next Tues 8/9 with all the kids and for our 8 year anniversary:) (WOW!! 8 years already!! Seems like yesterday we were married;-) So pray we are all healthy enough to go have some fun together!! I'm hoping he is all better by his next CF clinic appt on the 24th.


I have one last prayer request...one of Lil' Chris' CF buddies, Phoenix, is sick and in the hospital and could really use some prayer. He is in a lot of pain and the doctors can't seem to relieve it(that's all I can say for now without permission from his Mommy;). GET WELL SOON, PHENNYMAN!!! WE LOVE YOU!! He is loving the cards that are being sent to him. "Family and friends are invited to create and send personalized cards to patients who are currently hospitalized. The card will be printed and hand-delivered by hospital volunteers." All you need to do is go to http://www.childrensmercy.org/patientcards/chooseCard.aspx then choose your card and click "next" at the bottom. Type in Phoenix Entrikin age 3 and they can send him a card from you! His wall of love is growing and I don't know about you, but I'll do anything to put a smile on his lil' face right now:) Please do it, it only takes 2 seconds!! Thanks:)

I'll keep you posted,

M

PS. So far, he hasn't been keeping the mask on;( I have a feeling Ayla & I will wake up tomorrow with a runny nose;(