1st TOBI Treatment Went GREAT!!

Lil' Chris did GREAT with his first TOBI treatment!! I couldn't have been more proud of him! TOBI is something that I have been dreading for years and all he did was giggle through the whole treatment almost:) LOL Once I figure out how to post video's and pics on here from my iPhone, you'll see what I mean;) I'll post it on fb for now.

He surprisingly didn't say anything about the taste! I did get some good feedback from some fellow CF mommas to have him rinse out his mouth afterwards or to suck on some jolly ranchers or something during treatment to decrease the metal tasting. I could smell it even! It created a lot more mist in the air than I thought it would, def more than the Pulmozyme. It didn't seem to take as long as I thought it would either. I wonder if it's b/c we have a very powerful air compressor. We have the Invacare Moblair 50psi. I think it took like 10 minutes, not too bad. I heard it would be 15-20 min.

In my research, I found a really good site that I thought I would share with everyone...http://www.tobitime.com/index.jsp I esp like the video part(Taking TOBI) that shows you exactly how to administer and clean the nebulizer. Very informative!

I'll be calling the CF clinic tomorrow to get all the details.

Well, I gotta get to bed, 4am is going to come pretty quick! I just wanted to update how his first treatment with TOBI went:)

Thanks for the prayers,
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 / Pray for Tricia

Thanks so much for all the prayers everyone! 

Lil' Chris is doing MUCH better!! His cough is gone and his nose isn't stuffy anymore!! 

Praise the Lord!!

He still has a lot of pills left for the Omnicef and alot of the flonase left. We've stopped the flonase, but are continuing the Omnicef. Usually when we get the liquid antibiotic it is only for 14 days, but this pill form was for 21 days. I'm just VERY thankful that his cough is gone. 

Ayla's cough is gone too! Her's was kinda bad too. We all got that cold, but are all better now! YEA!! 

I had a procedure done on my toe this past Monday, and it is doing much better so far!! After 1 1/2 months of excruciating pain, I was ready to do anything to make it go away. Unfortunately, I had to stop running everyday, but.....before I had to stop to let my toe heal.....I reached my goal of running every single day for 2 whole years straight!!! WOO HOO!! I missed 4 days b/c the dr said to rest my toe, and I missed one day b/c I had a stomachache and was waiting for it to go away, but then I accidentally fell asleep;) LOL Oh well, not bad for only missing 5 days in 2 years(other than vacations where I didn't have my treadmill;)

Please continue to pray for Lil' Chris. Also please keep Tricia in your prayers still. Her husband Nate said that the dr's told her how close she is to dying. This just breaks my heart! She was the first CFer I knew. I followed Nate's blog religiously... www.cfhusband.blogspot.com. She and Nate were why I started this blog. Pray she gains weight and strength to be listed for a 2nd double lung transplant. I think the reason I connected with her the most, was b/c of her love for the Lord. She always gave praise to God even at her worst times. I admire her sooooo much!! 

WE LOVE YOU TRICIA!!!

Thanks,

M

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 / 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?? :)

1300 HOURS on the Vest

He hit the 1300 HOUR mark on his Vest a month or so ago. I had taken a pic of it, but it was one of the ones that got erased on my phone. Here is a pic from the other day at 1335 hours. 

Can you imagine your kid sitting still for that many hours from age 1-5 years old?? I give Lil' Chris a lot of credit for all he has to do on a daily basis. 

He's such a good kid 

and hardly ever complains!!

As for a CF Update, he is doing great!! Keep the prayers coming daily, they are working!! :) He has his next CF clinic visit on 10/24, so pray he continues to stay healthy and his next throat culture is normal!

Thanks,

M

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 Day of Kindergarten!!

Lil' Chris started Junior Kindergarten on 8/21/12 at the local Christian School at 5 years old!! He had no problems leaving mommy and daddy on the first day either! He loves making new friends! He is only going half day and will do full day 1st grade next year as long as he passes JK, but I'm pretty sure he will :)

I can't believe a few weeks have gone by already! He has been doing great and already learning so much! He memorized his first Bible verse pretty quick! "Let us fix our eyes on Jesus, the author and perfector of our faith." :) AND he has the pledge of allegiance memorized already too!! I'm so proud how well he is doing:)


His teacher is Mrs. Falkenberg and his teacher aide is Mrs. Curtis. They both are wonderful and have been VERY receptive to all that I have taught them about caring for a child with Cystic Fibrosis! Mrs F knows a family with 2 kids with CF, so she is a little bit familiar with it. I have given them both the clip on hand sanitizers that I always wear wherever I go:) It's up to them if they use them or not, but it would def keep down on the germs in the classroom, not just for Lil' Chris, but for all the kids and them as teachers too:)

We are in the process of starting a 504 plan for Lil' Chris. This will stick with him throughout his school years. Click this link for more info http://www.cysticlife.org/downloads/504FlyerFINAL.pdf
A 504 Plan is a legal, written document for students with physical impairments
such as lung disease/GI problems that limit one or more major life activity.
-It protects a child’s rights and health while at school.
-It falls under the provisions of the Americans with Disabilities Act (ADA) of the Rehabilitation Act of 1973.
-It is reviewed/updated once a year OR each time a child changes schools.
A 504 plan is not an Individualized Education Program (IEP) as required for
special education students. If your child’s CF contributes to learning difficulties,
an IEP may be required under the Individuals with Disabilities Education Act.

The possible 504 Plan accommodations for a child with CF include:
-Your child can take his/her pancreatic enzymes during school.
-Your child can have reasonable access to snacks and unlimited access to
water due to medication use. As well as restrooms due to digestion issues.
-Your child can be isolated from sick children and other students with CF.
-The school will provide alternative activities when your child has CF
exacerbations and cannot participate in gym class.
-Modifications can be made based on health status, fatigue and workload.
-The school will provide Homebound Teaching and/or Intermittent Home/
Hospital Instructional Program with proper documentation for children with
high absenteeism.

Make a video - it's fun, easy and free!
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As for a CF Update... Lil' Chris is doing well. He had a lil' cough when school first started, but nothing major, we did the Acapella before his first day (in the video above), just in case. He hasn't been coughing everyday, but some mornings I've noticed he has coughed more than others. I think it is just his allergies though. If it progresses, I will def be calling in an antibiotic. I'll keep you posted. He had a bad night on 9/3. He woke up in the middle of the night throwing up off and on for like 3 hours. That's what he usually does when he has something with soy protein in it, but we didn't think he had anything with soy protein, but we did eat out earlier that day and the only thing that he hasn't had before at that restaurant was a chocolate milkshake, soooo idk. We kept him home that Tuesday after just so he could get some sleep. He woke up fine and has been fine since. It's been a while since that has happened. BTW, he is doing GREAT with the Pulmozyme!! So proud of him! He likes to pour it in, and he even sterilized it with me the other day:) It's never to early for him to learn how to take care of himself, right?? :)


Check out the video above, he did such a good job smiling nicely for his first day of Kindergarten pics:) Sorry it's so long, but I didn't want to edit it and cut any pics, b/c my phone's memory card got damaged somehow and I lost a ton of pics;( Luckily I uploaded these before that happened. I CANNOT wait til the end of this month when I can FINALLY get my iPhone 5 when it comes out!!! Then hopefully I won't lose all my precious pics!

Please keep Lil' Chris in your prayers that he has a healthy school year...it's scary letting him go, but I have to;( Also, keep lil' Aubrey in your prayers as she is sick right now. Nathan, Lil' Chris' cousin with Leukemia, has a double ear infection and horrible headaches, so he could use your prayers also. Poor kid already had to miss his 2nd and 3rd day of school already:(


BIG THANK YOU  to Samantha, Aubrey's mom, for doing a CF fundraiser at Applebee's tonight!! You are a GREAT CF mom already jumping into fundraising and she is only 6 months old!! WAY TO GO!!


Thanks so much for your continued prayers!
M