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

Wild Child

My little wild child is into everything now! He is crawling everywhere and standing on his own. He found his nana's purse and thought he'd see if anything interesting was in there lol

He'll get between your legs and untie your shoes!

Here he is trying to wake nana up! lol

Kaleb's Recliner

Fun in New Orleans and CF appointment

Below is Kaleb and Dr. Hopkins. Kaleb got a great report! They are very happy with how much weight he gained and his chubby cheeks he's got going on! lol He is back on tobi breathing treatments and cipro oral antibiotics. Hopefully we can get rid of this bacteria in his lungs this time around! All in all it was a great appointment!

We have been very busy because my mom and her husband just moved here from Wisconsin. So I haven't been blogging much lately. Kaleb had a CF appointment with his care team on Wednesday in New Orleans. We decided to take them and show them a good time in New Orleans!

We left on Tuesday and got a hotel room right on Canal Street close to all the wonderful tourist attractions. We checked in and then decided to just walk down Canal to Bourbon Street before it got dark.

Kaleb thought this mime painted silver was wild looking! He didn't what to think about him, his face just looks like he's going "What the heck are you??" lol

Kaleb LOVED this jazz band we found at the end of Bourbon Street.

After Kaleb's appointment we took a steamboat ride on the Steamboat Natchez! It was really awesome, we all enjoyed it so much!

Before we headed back home the next day, we went to the Audubon Aquarium of the Americas.

Kaleb LOVED the aquarium SO much!! I had the best time just watching him get so excited over the fish!

After the aquarium we headed to the French Market where I got this really cute hat for Kaleb!

Then we headed home where Kaleb totally zonked out! He was exhausted from all the fun, but it was a really great trip we all enjoyed very much!