Hi M, Daniel's mom here, and thanks for calling today. It was nice chatting. I really enjoyed reading your blog, and cannot believe how big Chris is. I wanted to let you know that when you go for your annual clinic visit in June, there will be a occupational therapist evaluating Chris. She should be able to give you a good idea if he is lagging. Also your peds will also evaluate at his 1 year well check up. Between these two assessments, you should have a pretty good idea if Chris needs evaluated. If he does, you will be working with the people at the Help Me Grow Program. When I had concerns about Daniel and took him in, everyone was so great. I have nothing but good things to say about them. I also thought it would be great to see if we can get some CF moms locally together. I would be happy to help set this up. I think we could all benefit. Well my husband is doing Daniel's vest (Daniel sleeps right through it!), so I had better wrap things up. This was my first ever response to a blog, so sorry if I went on too long. Daniel's Mom
YEA!! Daniel's mom is on!! It was so nice catching up yesterday. I was thinking, all us CF moms should get together after our walks. I know I still have a lot to do... make pins, try to get more donations, etc... So, I'll give everyone a call afterwards to set something up. We'll all get together some time in May hopefully. Hey, thanks for letting my blog be the first one you ever left a comment on! Isn't it FUN? Hope to talk to you more through this blog : ) M
Reflux- 1 Prevacid Capsule(15mg)once a day to help enzymes work better
Respiratory:
Hill Rom Vest 2 times a day for 30 minutes each
-Frequency 10 Hz for 10 min, then switch to 12 Hz for another 10 min., then switch to 14 Hz for another 10 min. two times a day
-Pressure set at 5 for first 20 min, then 4 for last 10 min.
-Currently at 1,850+ hours total (been using since he was 11 months old) (Got a new machine, so lost count now.)
-Upped his Creon 6000 enzymes from 3 to 5 on 1/1/13 due to stomachaches. Switched to Creon 12000 on 1/29/15. 2 with each meal and snack(7yrs old).
-He started his first nebulizer, Pulmozyme, on July 1, 2012 at 5 yrs old. He uses Albuterol inhaler and the Acapella when he has a bad cough.
-His first TOBI treatment was on 11/5/12, b/c he cultured Pseudomonas for the first time:( Also first time taking Cipro. 5 yrs old.
-Started Claritin for allergies on 5/8/13
-1st liver ultrasound in 2016
-1st glucose test 6/21/17
He has never had any sinus problems... Praise the Lord!
Last CF Clinic Visit: 3/15/17 Weight: 76 lbs. 5 oz. Height: inches BMI: 42 percentile PFT: 111/110
Next CF Clinic Visit: 6/21/17 at 7:50am
We are VERY blessed as to how well Lil' Chris is doing and has never been hospitalized. Please pray with us that he will continue to do well and stay as healthy as possible.
Thanks, M
Search My Blog for Anything =)
Start here!
Hi! I'm a CF Mom (M) and my son is Lil' Chris. He is 10 years old. He's not so little anymore, so we just call him Chris or CJ now;) He was born with a fatal genetic lung disease called Cystic Fibrosis. This is where I keep a record of EVERYTHING(including lots of pictures and videos:) My sister(D) and I started this blog to not only keep a record of everything and keep family updated, but to interact with other CF families as well. That way we can all help each other out by sharing useful information:) I've learned soooo much already and so can you! Come along for the ride! I try to update whenever I can=)
This is a great spot to start out on our blog so you know our story...Start Here
PS. Lil' Chris has a lil' sister named Ayla(pronounced long A-luh)! She is 20 months younger than Chris and does not have CF and isn't even a carrier.
Culture Results
11/12 Pseudomonas 1/13 Pseudomonas 2/20/13 NORMAL!!!! WOOHOO!!! 5/8/13 NORMAL!!! YEA!!! 1/8/14 NORMAL!!! OH YEAH!!! He cultured a couple diff things in 2014, but nothing to worry about.
9/12/09 Start Augmentin for 21 days for a cough from a cold.
3/9/10 Start Augmentin for 21 days for a bad cough from a cold.
5/3/10 Start Bactrim for 14 days for bad cough from a cold.
7/12/10 Start Augmentin for 14 days at 3ml 2x a day from a cold again.
9/15/10 Start Augmentn for 14 days at 3.5 ml 2x a day for a bad cough following a cold.
1/11/11 Augmentin for first ear infection
2/10/11 Started Bactrim for wet cough...no cold.
9/6/11 1st time on Omnicef for bad cough-from cold/allergies
1/30/12 Bactrim for 15 days 12.5 ml - weird cough after Disney
3/30/12 Started Azithromycin 5ml 1st day and then 2.5ml for next 4 days-wet cough after cold/allergies
9/17/12 Amoxicillin for Strep throat
10/24/12 Omnicef capsules once daily for 21 days for wet cough from cold. Also Flonase 2 sprays 2x daily**update**=did not finish either. Cultured PA, so stopped Omnicef to start Cipro and TOBI. Will do Flonase every other day.
11/5/12 Cultured Pseudomonas A, so started Cipro 250mg 2x a day for 21 days AND TOBI for 28 days(first time)
1/16/13 Cultured Pseudomonas again, so started Cipro and TOBI for 28 days again. (no cough)
12/29/13 Bactrim for wet cough, possibly from allergies. 14 days 3tsp 2x a day.
NONE IN 2014 YEA!!!!
Once in 2015 & 2016
Lil' Chris' Cold/Cough List
9/7/09 Runny nose for 2 days, then a cough. 10/21/09 Runny nose, only coughed when doing Vest. Up practically all night the last 2 nights. 12/28/09 Started a really weird sounding cough, no runny nose. Woke up kinda wheezing the next morning and hard to breathe. Cough lasted about 5 days and then went away with no antibiotics thankfully. 2/27/10 Started a runny nose and has had a dry cough for about 2 weeks. 3/2/10 Started wet cough and nose really plugged up and having drainage. 5/3/10 Cold and cough. 7/8/10 Cold after vaca, then turned into bad cough. 9/6/10 Stuffy nose/drainage=cold;( 9/10/10 Cough started, turned into a wet cough on 9/11 2/10/11 Has had a cough for about 2 weeks turned into a wet cough. No cold, but got headaches above right eye. 4/14/11 He caught Ayla's cold after a mini vaca w/o Vitamin D 6/6/11 Woke up with weird sounding cough which turned into a wet cough. 8/2/11 Cold & dry cough after 2 days of VBS and Church 8/5/11 Cold gone, but has wet cough now 9/6/11 Cold/Allergies turned into wet cough. 1/24/12 Weird barking cough turned into wet cough at Disney 3/21/12 Wet cough from cold/allergies-80 degrees in March 10/17/12 Started wet cough from cold. 3/7/13 Cold, no cough 5/8/13 Tiny productive cough, but we think b/c of allergies. was given Claritin and cough stopped, but still stuffy nose in AM. 6/29/13 Tiny productive cough, maybe allergies. Did excessive treatments and it went away without antibiotics:) 8/30/13 Cold, but no bad cough:) 12/20/13 Productive Cough and stuffy nose(got new Vest machine with cough pause option). May be allergies??? Crazy weather lately...60's, then 20's, etc. 12/29/13 We cough continued, so started Bactrim 2014 No major coughs, just few days after colds.
Fevers
Fever on July 24th 2009-after being on Augmentin for 3 days for a cough. Fever on Sept. 14th 2009-after being on Augmentin for 3 days for a cough. Fever on May 31st 2011-after throwing up off and on, but not from soy protein??? 9/17/12 fever from Strep throat 100.2 2014-2015 Winter: 3 24 hour bugs, fever and throwing up
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3 comments:
Hi M,
Daniel's mom here, and thanks for calling today. It was nice chatting. I really enjoyed reading your blog, and cannot believe how big Chris is. I wanted to let you know that when you go for your annual clinic visit in June, there will be a occupational therapist evaluating Chris. She should be able to give you a good idea if he is lagging. Also your peds will also evaluate at his 1 year well check up. Between these two assessments, you should have a pretty good idea if Chris needs evaluated. If he does, you will be working with the people at the Help Me Grow Program. When I had concerns about Daniel and took him in, everyone was so great. I have nothing but good things to say about them. I also thought it would be great to see if we can get some CF moms locally together. I would be happy to help set this up. I think we could all benefit. Well my husband is doing Daniel's vest (Daniel sleeps right through it!), so I had better wrap things up. This was my first ever response to a blog, so sorry if I went on too long. Daniel's Mom
FANTASTIC NEWS!!! GOD IS SOOOOOOOOOOO GOOD!!!!!!!!!!!!
lovin & missin you all
Mom & Dad
YEA!! Daniel's mom is on!! It was so nice catching up yesterday. I was thinking, all us CF moms should get together after our walks. I know I still have a lot to do... make pins, try to get more donations, etc... So, I'll give everyone a call afterwards to set something up. We'll all get together some time in May hopefully. Hey, thanks for letting my blog be the first one you ever left a comment on! Isn't it FUN? Hope to talk to you more through this blog : )
M
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