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.

Been Way Too Long

It has been way too long since I last blogged here!! I'm really bad at keeping up with things like this so I must confess I figured this would happen when I first began this blog lol

I played "crack the code" for 30 minutes trying to remember my password here after reading a few blogs from CFers. They are all by adults and they always make me really sad. Its hard to hear people with CF hating their lives and all the tough things they have been through. My heart goes out to them and my eyes always fill with tears as I read their struggles.

I thought after reading these blogs that it was important for me to continue blogging. As far as I know noone really reads what I write lol But...if one mother of a child with CF reads this and feels like they aren't alone then I would be happy.

Kaleb is doing wonderful right now! He has chubby little cheeks and a chunky little buddah belly that I love! lol I am feeding him or giving him his Vital Jr. formula...switching them out every other time....every 2 hours throughout the day. I guess now that I typed that...that would seem like alot but Kaleb needs more calories than a normal little one. I never force anything on him, if I give him enzymes and he pushes the food away then that is that.....That usually isn't the case though lol He gets the Vital Jr. 3 times a day, once with a squirt of his vitamins and salt. He is on vitamin D pills right now because his vitamin D level was low. He gets that in the mornings with breakfast and takes it very well.

He is not on any breathing treatments or antibiotics right now because his chest xrays and cultures looked great! They take a culture and xray at every monthly appointment and decide where to go from there. We are now doing Vest treatments on him twice a day for 15 minutes each. For people who have no clue what that is lol its a machine that hooks up to a vest Kaleb puts on. The machine inflates the vest and vibrates/compresses against his chest. I do the treatments right before nap time and bed time because it shakes him to sleep lol He falls asleep every time and that is the easiest way I have found to do it. I put cartoons on for him to watch so he won't cry and get upset in the beginning.

He is a very sweet, happy, active boy and I am enjoying him so very much! I thank God for him being with me every night and I love every second I have with him! <3

Water Bug

When we first brought Kaleb home he HATED his bath! He would scream when you gave him one so we tried putting him in the bathtub with one of us and everything changed. He now absolutely lovessss being in water! We put him in his new swimming pool and he had a ball! He didn't want to get out of it but eventually we had to pry him out of it. lol