CF Clinic Visit 10/24/12

Lil Chris had a great CF clinic visit today! Gained about 1 lb, and 1 inch, and his PFT was 97% even though he has a cough right now! Dr prescribed antibiotic Omnicef and Flonase. Thanks for all the prayers and keep them coming as we await his throat culture results. Also, please pray for adult CFer, Tricia, as she is waiting for a 2nd double lung transplant and is having a very difficult time breathing. Her PFT right now is only 15%:( Lord give her strength!

The above was my facebook quick update, now for a more detailed one;)...
Weight was 46 lbs up from 45 lbs 3 months ago, height was 46 1/4 inches up from 45.5, and BMI was 30th percentile down from 47th percentile(dr's like it to be at least at 50). He didn't grow or gain very much, which is why his BMI went down I guess.

He did great when he got his throat culture!! He even coughed in the middle of it which was good, b/c she was able to get some mucous on the swab thing. I couldn't believe how much was on it! Please pray for no bad bacterias. I'll let you know what his throat culture result was when we get it.

He got his flu shot today and was not very happy about that long needle going in his arm. Pretty much cried and wouldn't move his arm til we went to the park to play. lol Good thing they did it at the end of the visit!

He started a cough last Wednesday, so it had been a whole week and it wasn't going away, and the dr said that his nose was pretty gunked up. I asked if she thought it was allergies or a cold and she said a cold. I pretty much figured that since the rest of the house got sick too. So she put him on an antibiotic called Omnicef. He was on this Sept of 2011. I looked back on his cough chart that I keep on the right side of this blog and was surprised that his last cough was in March! Maybe the Pulmozyme is working!! She also prescribed Flonase nasal spray to help clear up his nose. This is the first time he has ever had this. He has to do 2 sprays in each nostril 2 times a day. He did very well tonight when we gave it to him! I was surprised! Oh, and this is the first time he has had capsules for his Omnicef, usually we get the liquid antibiotics. They are huge, but he swallowed it right down like a champ:)


He did great on his PFT too!! His FVC was 97% and his FEV1 was 92% which was down a little from last time. I thought they were going to be way worse b/c of his cough but they weren't! YEA!!


Right after clinic, I did a CF AiA event today which Kohl's gave a grant of $500 for a Cure for CF!! Woot woot!! Love Kohl's and my awesome associates!!
  Thanks again for your continued 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

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

CFF's View on the H1N1 Vaccine

Click here to get the Cystic Fibrosis Foundation's recommendations on the Seasonal Flu and H1N1 flu vaccines.

Thank you to those who took my poll on the upper right hand side of my blog here. I greatly appreciate it. It's nice to see what other CF families are doing about such an important issue for CFers. So far it looks like everyone who took the poll says that everyone in the CF household will be getting the H1N1 flu vaccine. Sounds good to me! I know both Lil' Chris and Ayla are for sure getting both vaccines. I can't get the seasonal flu shot, b/c I am allergic to eggs. Apparently if you are allergic to eggs, they recommend you don't get it.
M