Doctor Appointments

Kaleb had a runny nose, slight cough and sneeze. That sounds like nothing at all to normal parents but I don't play around with even a small cold. I took him to his Pediatrician just to be safe and know for certain that it was only a cold. It turned out to be just as I thought and Kaleb is feeling much better today. I'd rather be safe than sorry and even though Kaleb was not wheezing, I didn't want to give it potential to be more.

I realized at that doctor visit that I have become a pro at his appointments! It's no wonder really with all the doctor appointments Kaleb has racked up! His CF appointments last hours sometimes so I guess a parent just adapts. Doctors and nurses always comment on the things they see me bring to his appointments. His nurse this time did the same, telling me, "What a great idea, most kids are bored in here." This made me think I should pass along the way I pack for a doctors appointment.

I know parents have to dread taking their kids to the doctor. Even the simplest Pediatrician visit can be draining! I started packing smarter after hours long CF appointments that Kaleb had. So, here we go....

Survival Guide Packing for Your Child's Doctor Appointment:

1. Get yourself a pretty bag you enjoy carrying and actually like. If your gonna lug this stuff around you might as well like the bag and not settle for some diaper bag decorated with baby cartoon characters that comes in only powder pink & blue.

2. Pack plenty of diapers & wipes-I have learned the hard way that you never know how long the appointment might go. For the Pediatrician I pack 5 and have always been safe. CF Center I pack 8...Sounds crazy but once he was having "CF blowouts" one after the other and I actually used 4 diapers in a row!! I was thankful to know I still had 4 on stand by.

3. I always have a change of clothes in the bottom of my bag.

4. I always have a crumpled up plastic grocery store bag in the bottom of the bag too. Just in case the reason you changed their clothes was a stinky or messy one, you have somewhere to put the dirty clothes. It doesn't take up much room and comes in handy.

5. I always have one of those receiving blankets folded under the clothes. You never, believe me, never know where you might have to change a diaper. Every bathroom you go in does not have a changing table. Every gas station on the way to appointments or wherever your going are not the cleanest. I like knowing I have something to lay under him if I need it.

6. Sippy cup with juice in it or just throw a juice box in a pocket of the bag. For CF appointments I always bring his Sippy cup full of juice and a juice box to refill if needed. I also always bring a bottled water for myself.

7. Ziploc bag full of crackers, cookies or cheetohs. If your a CF mom you know what this calls for you bringing as well...

8. Enzymes & apple sauce. If your child has CF they can't eat without the trusty enzymes & apple sauce. I use a gallon size ziploc bag and place his bottle of enzymes, a small container filled with apple sauce, a spoon, medicine cup to mix enzymes & apple sauce in, a few paper towels folded up small into the bag. I put the paper towels in to wipe the spoon and cup out if no water is around so they don't get everything icky. I ALWAYS bring this everywhere we go, I don't care if I think his appointment will last 20 mins. I still bring it. I learned the hard way about not bringing enzymes because you don't think you'll be gone long. It takes only a few minutes, might as well just pack them and be prepared.

9. Ziploc filled with crayons. I also tear out a few pages from his coloring book and fold them up small enough to fit in the bag. I let him draw all over the white paper stuff they roll out onto the table where they have the kids examined. They sometimes get bored with that so I have the coloring pages to fill a little more time.

10. I always fill a gallon ziploc with small toys. I bring some hot wheels, draw a road on that white paper thats on the examining table and drive the cars on the roads we made. I'll throw a few other small things like his little plastic tiger, lil farm people, a little ball we can roll to each other, small book into the bag.

11. I also always have a ziploc bag that I keep in the pocket part of my bag filled with medicines. I keep tylenol, thermometer, gas relief medicine, salt and benadryl cream. The tylenol has come in handy plenty of times when he was getting vaccinations and I forgot to give him some before we left the house. Kaleb always swells up if he gets bit by a mosquito so I keep the benadryl cream in the bag. I know the salt sounds strange but CF moms will understand. I like knowing I have it, if we are out in the sun and he is sweating a lot, I can just dump a small bit in his juice.

12. Last but not least I'll throw a small favorite stuffed animal in the bag. If he has to have a shot he can hold it or cuddle up with it if he starts getting sleepy while waiting.





Yes, ziplocs are my best friend! lol I use them quite a bit, they are just so handy and make it so easy to find everything. I know this list might sound over the top but while were listening to the kid in the next room screaming and crying cause he's bored or wants out...my son is actually having fun in our room. The doctors always say how well behaved Kaleb is and he is...but I think it has a lot to do with keeping him entertained, happy and comfortable. If he's not bored and feeling trapped in the room he seems calmer, which in turn makes us mommas more calm! I have been trapped in a doctor's office with Kaleb while he's screaming, crying, super cranky and bored. Chasing him around the room, while he tears everything up, bangs on the door....Oh yes, I've been there. Doctor walks in and were both a little sweaty, frustrated and ready to go. He thrashes the whole time the doctor tries to exam him and your like a caged animal...all you want it OUT! lol I have sooooo been there and thats why my list is extensive! It works I tell you! :) Happy bag packing!

Traveling

Traveling with my son who has CF is always worrisome and challenging. Just packing is a huge chore. It feels like we take half the house when we just go to New Orleans for his cf appointment for a day. So, you can imagine how my stress level has risen as I'm getting things ready to be away for 5 days. We are going to my dad's for 4th of July and I'm very excited about it. A lot of worry comes along with that excitment though.

We will be about 10 hours away from Kaleb's CF center. I am armed and ready with his cf doctor's cell phone number but still this makes me paranoid. I have looked up the closest CF center where we will be and put the number in my cell phone just to ease my mind a little. I have also called my cousin who has a seven year old and got the number to their pediatrician. I don't think anything will happen but if it does I am ready.

I am calling his CF doctor today and letting him know we are going out of town. I figured he should know and I know he will make me feel 100% better. He is always very encouraging and I think he'll put my mind at ease.

Sick people are always another endless worry. I've already told my family ahead of time, if anyone is sick we cannot bring Kaleb. I've also reminded them about washing hands and that he cannot be around any smokers. It may sound harsh but it's necessary. Sick people in stores and public places are the normal for us. Smokers standing outside of a place we are going into are sadly, normal as well. All we can do is take Kaleb away from it. I know I sound like a worry wart but I really don't believe I am. Kaleb does anything a normal child does when it comes to fun and play. I don't want him to miss out on anything but at the same time if someone is coughing their head off, we leave....I think that is the smart thing to do. If we go to the playground and a kid's nose is running with snot down to his mouth...it is definetly time to evacuate! Abandon ship! lol

Packing. Oh the joy of packing half our house... Vest machine, machine for his nebulizers, enzymes, Tobi, the dreaded applesauce, vitamins, zantac, syringes, nebs, bowl to sanitize nebs in, vital junior, gatorade, salt, lots of salty snacks, sponge to clean only his stuff, his cups, children's ibproferin, a few hand towels to lay on counter to dry his nebs on, toys, clothes & extra clothes, his pad thing that folds out and I change his diapers on, lots of diapers, wipes, food for him that I think my dad won't have, culturelle almost forgot it, his shampoo, toothbrush, gas medicine, oragel cause he's got the last of his teeth coming in, his puppy, blanket, pillow, extra prescriptions just in case, zip lock bags, plus all of our stuff. Whew! I think thats it but I always forget something lol

While there is quite a bit to worry about I think it's well worth all the trouble. I am so excited for everyone to see Kaleb! I'll survive! :D I don't think any of these reasons are good enough to stop us from traveling. It might take a little more effort than usual but if Kaleb sees CF stopping us from doing things just imagine how that would effect him. I don't even want CF to stop him from anything! Dream big, the world is his!

What I've Learned

I feel like I have gained a whole new perspective and acquired a mountain of knowledge. I have been through hell and back when Kaleb was brought into my life. It was a bundle of joy mixed with uncertainty and quite a bit of fear sprinkled on top, that entered my world. People say I'm a strong person...I just say I did and do what any mother would do for their child. What else can you do? Failure is not an option and I hope that is how Kaleb will feel someday.

I think I found out what I'm capable of when it comes to my son and the capabilities are infinite. I learned that I would do anything for him. I know my love runs deep and that his life is truly more important to me than my own. The times that his life was in the balance were my darkest. I must say holding my son to my chest in that small narrow room and waiting was antagonizing. Actually handing him over to the surgery staff and watching them walk away with his small little life was killer. I did it alone might I add, my husband was on his way from work. (Someone had to work or then where would we be) I don't believe I was strong. I was alone, scared to death and I cried like a baby. I think I learned it's not so much about being strong but more about love. Nothing makes it easier, I can give no advice. It's horrible, there are no profound words someone can say to help someone else going through it. It's just digging in, doing what needs to be done and trying to keep yourself together long enough to sign the papers for your son to go into surgery.

A nurse told me one day in NICU, "The babies that have their parents here a lot always seem to do much better." That was all it took for me to completely throw myself into being there at that hospital for the most insane amount of hours anyone has ever been at a hospital. I stayed there all day, held him, "kangarooed" with him, sang to him, talked to him, stroked him, kissed him, held his hand, changed his diapers, helped bathe him, learned how to do all his medicines, changed his bedding, learned what all those machines did....I did it all, anything they would let me do. Find something that helps to throw yourself into is my greatest advice, thats what
I learned.

Something very important I learned from everything I have been through is the importance of encouragement, lifting someone up and love. I entered this world of parents whos children are fading away before their very eyes. I met plenty of parents in ICU, PICU and the Peds ward that will always be in my heart. These beautiful, amazing children who have these horrendous diseases... It is absolutley heart wrenching, it will tear your heart out to hear their stories. I will always carry them in my prayers and I'll never stop hoping for them.

My heart has grown through all this. I feel like it is everyones job to encourage others and I've taken on this job. I just want to make other cf moms, family, anyone going through a rough spot, strangers, friends to feel uplifted. I just think it's important to be there for someone whether you know them or not. A nurse who was a complete stranger to me did this for me. I was watching them get Kaleb ready for his first surgery and I had to walk away. I was crouched in a hallway, having a panic attack and crying. She wrapped her arms around me and prayed for us. Then she told me,"Get back in there honey your son needs you." I did, a little taller and braver. I thanked her whole heartedly later but at that moment I truly needed her. A stranger, I needed her encouragement more than she'll ever know. See...a lesson...Sometimes it's not how strong you are but how strong someone can make you! Maybe, just maybe I will get the chance to be that for someone else and I will never miss the oppurtunity. I hope you won't either.

Life has changed for me. It's not about me and probably never will be again...I'm totally fine with that. I was probably way too selfish anyways. Life shouldn't be about us anyways, if it was we'd most likely be alone. I think I've learned to just be in the moment. That it truly is not about "things" you have and more about the love you have. Life is ever fading...love, live and keep the important things into perspective so you don't waste a single moment of it. My son changed my life and filled me with the strongest love I have ever felt. He is my heart and I have never known love like this.....now that is the most signifigant thing I learned. :) <3

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.

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