Puppy's Breathing Treatment

After his Tobi treatment was over Kaleb didn't want to give the mask up, so my husband got one of his older ones and let him play with it. He decided his puppy needed a breathing treatment lol He was even trying to copy the noise his machine makes while he did it. I thought it was really cute so I snapped a couple pictures.

Bubbles!

My mom bought Kaleb a battery operated bubble blower gun! It's pretty awesome, one click of the trigger and it sprays bubbles out! The whole kitchen was full of bubbles and Kaleb was chasing them! We had a great time playing with it. Idunno who had more fun, me or Kaleb lol

One Of Those Days

I didn't get much sleep last night. Kaleb just doesn't sleep very well while he's on Cipro. Side effects are nightmares and insomnia...He was restless and just seemed like he couldn't get comfy all night.

I sat in my chair staring at the huge area on our counter designated for all of Kaleb's medicine and felt sick to my stomach. Pretty crazy...

I chased Kaleb around with a syringe full of Zantac and finally got him to take it. I went back in the kitchen to get his Enzymes ready and I just lost it. I think it was the lack of sleep that let the emotions get to me. I cried my eyes out and I was mad....How does Kaleb deal with this everyday, if I'm exhausted he has to be totally worn out...I was mad my son had to take all this medicine and dedicate so much of his world to treatments. I was mad at CF...I was tired...I wanted to not have to stick another syringe full of some horrible medicine in his mouth ever again.

I looked up to see Kaleb standing on the couch, huge smile on his face. He blew me a kiss and start dancing to the music that was on the cartoon he was watching. I smiled....if he's gonna smile then I am.

I don't know how he does it, he's my hero.

A Day In The Life Of Kaleb

I'm always amazed at what these beautiful CF kiddos go through every day. I dunno how many times I've made the comment that Kaleb, at 20 months old, has taken more medcine than I have probably my whole life and I'm 30.

Here's a typical day for our Kaleb:

8:30 am - This is typically around the time Kaleb wakes up.
Diaper change
Try to chase him around and get him to take 5 mls of Ciprofloxacin
Give him a cup of juice and make coffee

9:00 am - By the time I'm done with that its usually around this time.
Prepare small amount of apple sauce with his Enzymes opened and mixed in
Chase him around and do humiliating things to get him to take Enzymes
Breakfast-today-french toast sticks lots of butter/rice cereal extra butter

9:30 am - Snuggles up on the couch with mommy and watches cartoons/gets more awake
Good and awake he runs wild and brings half his toy room in the living room

10:30 am - The pooing begins-Cipro gives him diarreah
Diaper change

11:00 am - 2 hours since his Cipro so he can now have his other medicines
It's also time for his Vital Jr. supplement drink
Chase him around and get him to take 2 mls of liquid Zantac
Chase him around and get him to take 1 ml of Aquadek if he won't take it
then I put it in his drink.
Chase him some more to get him to take a vitamin D pill
Prepare his Enzymes in apple sauce once again and the chase proceeds
Shake up a Vital Jr. and add 1/8 tsp. of salt--Shake, shake, shake
He sits up on the couch and enjoys his drink

11:30 am - He plays with toys

12:30 pm - Try to talk Kaleb into coming near me while I'm holding his Vest.
Try to put the vest on him while he throws a fit..breaks my heart.
Watches cartoons while shaking like crazy for 30 minutes.
(I pray to God he falls asleep) He almost always does...(ty God)
Try to take his vest off without waking him up (almost always succeed)
Breathing treatment time-Tobramycin-usually takes about 30 - 40 mins.

Almost 2:00 pm - Success! All done :)
Try to turn off loud, humming machine and not wake Kaleb up.
Lay him down in his bed.
Bask in silence--happy dance ;)

3:00 pm - Pretty much always wakes up around this time.
Enzymes in applesauce chase is on--mommy wins though!
Time to eat-today-Vienna sausages, cheetohs, 2 nilla wafers, go-gurt

3:30 pm - More play time
I usually take him outside for a little bit or swim in his pool
Not suppose to be in sun alot since on Cipro so we haven't been swimming
Today I set up his neat tunnel that hooks on to a school bus and another
box that he climbs through, he had a great time.
Then we played with his big Lego blocks for awhile.

5:00 pm - Time for another Vital Jr.
You know the drill now lol--Apple sauce and Enzymes chase.
Sits on the couch and drinks it.

6:00 pm - Chase Kaleb with a syringe of 5 mls of Cipro
Not happy with me at all but I get him to take it.
We usually color and draw or play with his playdough for awhile.

7:00 pm - Another round of chase Kaleb with applesauce and Enzymes.
Dinner-today-Mashed potatos with lots of butter, salt and some cheese,
carrots, brownie.
Snuggles up on couch with me, I read books to him, watch cartoons, just
relax.

9:00 pm - One last stand for the applesauce and Enzymes....they always win.
One last chase to get 2 more mls of Zantac down Kaleb.
Shake up another Vital Jr. and let him drink it.
Plays a little bit and gets good and cranky/sleepy.

10:00 pm - I always give him about a hour after food/drink before The Vest.
He is NOT happy with me at all when he sees I'm holding his vest.
A huge fit is thrown...finally wrestle the vest onto him.
He zonks out after about 5 minutes of shaking/vibrating.
Another round of breathing machine.

11:00 pm - An exhausted momma lays down her exhausted baby, covers him up and
watches him lovingly :)

1:00 am - Hear Kaleb whining and moving around so I check on him, rub his back
He falls back asleep. Side effect of Cipro is nightmares and insomnia so
he doesn't sleep too well on it.

3:00 am - He wakes up crying and stands up in his bed until I come get him.
Snuggle him up in the bed with me and he falls back asleep.
He doesn't give me much sleep with all his thrashing around and whining.

Pseudomonas

Kaleb's pulmonologist called today and let me know that Kaleb cultured Pseudomonas. He has cultured this before so I knew what to expect. The doctor said it wasn't very much that was found but he wanted to treat it aggressively. He called in a prescription for Cipro and Tobi for us. He will be on a round of Cipro for 3 weeks, two times a day. He will be on the Tobi for a month, two times a day. His doctor is always out to erradicate the Pseudo right way as soon as he finds it and we have been successful so far. Doc told me to not be freaked out and that this was a normal thing for people with CF and that we are going to get rid of it. He is always so positive and very aggressively proactive. I would be lying if I pretended him culturing something didn't bother me. It always does, very much, but I think occupying myself with fighting it keeps me together. I just want to know what I need to do and I go for it full force. So, back to breathing treatments again...Kaleb is not fond of breathing treatments AT ALL! I just wait until he falls asleep for his nap and bed time to do them, otherwise its a fight...sneaky, sneaky mommy! :)

God bless all the moms out there giving their children the treatments they need due to a disease they have. You are all awesome!! <3

Kaleb's CF Appointment

This past Friday was Kaleb's bi-monthly CF appointment in New Orleans. His care team was so happy with Kaleb! They were very excited about his weight! He is 26 lbs. now and has full chunky lil chipmunk cheeks that I love, love, love! He is just doing so amazing and his doctors/nurses were so very excited about it! Dr. Hopkins said Kaleb's lungs were clear as a bell! They did a throat culture and will call us with the results. As long as nothing is found in his culture he will remain off of any Tobi!

His CF care team is just absolutely amazing! I always feel 100% better when I leave that office. They are just so encouraging and uplifting. They make me feel so good about what we are doing and how hard we work to keep Kaleb healthy. Thank God for them and I wish lots of blessings upon them all!

It is 4 hours to New Orleans so we are all worn out by the time we make it home. Kaleb is VERY happy to be out of the hotel and home with his toys. Its raining right now and he is standing in the window where I have the blinds raised. I keep them up because he loves to look outside. I'm just watching him looking out the window, watching the rain in amazement and smiling cause I am just amazed by him and his absolute innocence. I'm just so happy to be his mom and I feel so lucky to have him as my son!

Great Strides

I just made us a team for Kaleb in the Great Strides Walk for CF last night! I woke up this morning to find a $100.00 donation made for our team!! This was very encouraging and I'm so excited to see how much money we can raise! The walk isn't until October so we should have plenty of time for fundraisers and to invite lots of walkers to our team! If your reading this and would like to make a donation, just click on the great strides button on the left side of my blog. Any donations are GREATLY appreciated! GO TEAM KALEB! :D

My Outlook

The outlook I try to have on my son's disease is actually pretty simple. I strive to be as positive as I possibly can and hope doing so will affect his outlook when he is older.

I don't want my son to hate his life.

I have read alot of blogs by teenagers and adults with cf. I always have tears streaming down my face when I read them saying how much they hate their life. My heart breaks for them and it always makes me think of Kaleb, of course.

I found out there are adults with cf who have amazing attitudes about their situations and I want to help Kaleb be one of them.

I praise him highly for taking his medicine and doing treatments. I want him to feel like doing these important things are an acheivement. I also want him to feel like all these things he does to keep healthy are just a normal part of life.

My outlook is to keep my baby happy, healthy and to enjoy every second I have with him. Dwell on his accomplishments and showing him the world rather than how long he might live. I am a very lucky person I think and I honestly do not think we have it bad. I do not want to feel sorry for myself and I see myself as blessed. Don't get me wrong I have my moments and I do break down once in awhile. I am not super woman. When I wake up in the middle of the night because Kaleb is coughing in his sleep, I sit there in the dark and watch him, tears streaming down my face. We all have our weak moments and I don't think we could make it if we weren't allowed them once in awhile. If we didn't care we wouldn't worry. But ultimately.....

MY SON HAS CF, CF DOES NOT HAVE HIM and I truly believe that with all my heart.

CysticFibrosis.com

I found this awesome site a couple days ago! As many times as I have googled and looked stuff up about CF I don't know how I've missed it all this time! It is really great to talk to other parents and people with CF! I'm really enjoying reading all the posts and making friends with the CF community there. I feel like I finally found people who know how I feel and understand.

Also my husband went to a garage sale this past weekend that was actually to benefit cystic fibrosis! The lady having the sale was selling belongings from her very close friend who had passed away from cystic fibrosis. My husband shared our story with her and he was brought to tears when she shared hers. He brought home a vibrating recliner that belonged to the ladies sweet friend. It really is a small world and my heart goes out to this man's family. I hope he's breathing easy....God bless his family and friends.