Update on Baby Anthony: Going on 1, Strong, and Battling CF Every day!

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Baby Anthony is doing wonderful, we truly are blessed! All of your prayers have reached him because he is a true miracle indeed. To find out more about Anthony’s condition, visit cff.org, here is my Update on Baby Anthony: Going on 1, Strong, and Battling CF Every day! He is going to be 1 years old April 15th, 4 days away! I am going to review the most difficult moments of his first year of life we’ve had to endure with baby Anthony, and how we conquered them, keep reading below!

Our reaction to the positive sweat test:

Upset and sad! We ( Big Anthony, me and family) felt so sad when we found out there still is no known cure for cystic fibrosis, but with the Nemours cystic fibrosis team, we felt relieved we had such a big team there to help Anthony every step of the way!

Hardest part of living with cf

I would have to say was when Anthony fell sick in the hospital for a month with pneumonia and mrsa (which till this day we’re still stumped as to where he got it from and will never know the answer). Watching Nurses put needles in your child’s head, arms, and legs, NOW THAT IS HARD! Especially when I had to hold him in my arms for them to do that! :’’’(

Hearing the constant hacking and coughing up phlegm. Anthony has been on multiple antibiotics in his first year of life and thankfully his immune system is still strong. You see, with cf, it’s easier to catch bacteria in the lungs due to all the excess mucus the body produces.

We catch a cold and get better in a week, Anthony catches a cold and it can last up to a month! How’s that for all of you who think you’re miserable? He has to deal with phlegm every day for the rest of his life! Luckily he has a pretty strong cough, so bringing up that phlegm is no problem for him lol.

The other hardest part of cf is on those long days. When things just weren’t going right, I started getting really depressed, but thankfully am doing better now! I’m a work in progress, as they call it.

 

Juggling two other children while dealing with Anthony’s illness

There were times where my oldest son felt like he wanted mommies attention more and wanted to do more things with me. In reality, I barely had time for myself. This was very difficult since he was 4 at the time and didn’t understand. I am blessed that big sister stepped in to make him happy for the times I couldn’t. I also began to involve him more in ax’s everyday routine calling him Dr. Rudy so he would see he plays a very important role in his brothers life. He became more understanding, and I read Mallory’s 65 roses to him so he could have a better understanding what his brother is going through. Big sissy read the book too. It made big sissy sad to learn about his illness and to know that he would probably only live to the age of 37 (cf life expectancy) after watching the video below, but we assured her new medicines were on the way and that we were going to give Anthony the best life possible. Living every day to the fullest is our goal for baby Anthony.

Watch this heart warming video that touches my heart about a 15 year old boy with cystic fibrosis. I’m sure you know the song, but if you don’t, I would really appreciate if you watched the video below for baby Anthony.

I lived- One republic

The therapies and treatments

Sometimes baby ax doesn’t want to sit through his morning or night treatment, so I have to bounce him on my leg to keep him entertained. Pat pat time has turned into a musical therapy time, including me singing to keep him happy while I pat pat his chest, back and sides.

He loves the salt room though and has been going there since he was about 4 months old.

 

The sever eczema on top of the dry cf’ers skin

Anthony’s skin would become so red, the poor guy would itch constantly all day. We had to put socks on his hand to keep from itching, because the baby mittens would come right off. He inherited that from my side unfortunately, where as it completely skipped my first son, what are the odds? He continues to itch, but has less irritated skin now. Keeping his nails short is the key, and socks on his hands at night, since he itches at his scalp and face when he’s tired resulting in bald patches on his head. The hair finally started growing back, yay!

 

 Constant disinfecting and extra cleaning

This has become a routine in our daily lives. But at first, it was pretty stressful. Daddy Anthony (Big Anthony) and I split the chores half and half. We clean and disinfect the house multiple times a week to keep baby Anthony safe. Siblings also play a huge role in helping with the chores, and are always more than happy to Lysol certain areas of the house and help by keeping their rooms nice and neat.

 

The strange thick sweat

His sweat is so salty that it actually burned his skin causing it to crack and bleed:’( He also had strange sweating coming from his elbows that was pretty slippery too. Nemours informed us that he would grow out of it and it was a normal cf’er thing, but it was still strange and made me worry! Eventually though it did stop and now sweaty elbows are a thing of the past!

 

Horrific Diaper Rash!

Thanks to Grammy (my mother in law:) we discovered cornstarch to help poor Anthony’s horrific diaper rashes!

 

The Medications

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The list is so long for such a little guy!! Parents of non cf’ers only have to worry about preparing a bottle for their babies, on the other hand, I have to prepare meals AND give him pills with each meal. The next time you’re cursing in the middle of the night when you spill formula, just remember, it could be much worse. I’ve spilled his creons before and had to prepare them again. This is stressful, especially when you have a screaming child waiting for a meal!

I crack them open on a baby spoon of applesauce and down the creons (Enzymes) go. I also have to give him other medications by mouth with syringes, lots of syringes to wash at the end of the day, but now there aren’t that many:)

What has helped?

The creon wheel (as I call it). I have one just like the image above but its green (not neon green I wish) on the top with black letters and white on the bottom part. I got it at the dollar store for a dollar, now that’s cheap, and it hasn’t broken at all!

 

The long nights

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Anthony slept mainly in the swing for the first 7-9 months of his life. It was the only place he would sleep, since he would toss and turn in the crib (which has an inclined wedge 45 degree angle to keep him propped up when he had the horrible re-flux (read below). His crib is still inclined today.

 

The body shaking re-flux spasms

When Anthony was very little (started at 1 month stopped around 6-7 months)

He would have severe re-flux spasms where he would begin to shake uncontrollably and milk would come up through his mouth. This horrified me  the first time I saw this and I held him and cried while he calmed down. Nemours prescribed prevacid which helped him battle this. It would happen randomly and last anywhere from 20-30 seconds (longest 20-30 seconds of my life)! What would you do if you saw your baby shaking uncontrollably and regurgitating milk?!

 

His mini one button for night feedings

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Not Anthony in the picture, but this is exactly what his button looks like

 

This was probably one of the hardest. You see, our little guy doesn’t like to stay in one spot when he sleeps. He usually un hooks himself from the machine during night feeds. Many early mornings (3-5) I have found a mess of milk all over the crib and a screaming Anthony.

Other nights he would clamp the port and get tangled in the cord, (thankfully never his neck though).

He also itches and tries to tug at it, pretty nerve wrecking since that’s a hole in his stomach!

So what do I do now?

I was given the option to give him an extra feed during the day versus night feedings, so he gets his zinc medication and extra milk through his belly when he naps. Problem solved!

I have even graduated to changing the button out myself!!:)

Anthony has even had his first play date with my good friend Jenny and her sweet baby Kaydence, it was so much fun!

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Stroll through the park!:)

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Yay! Swinging time!

 

Heartwarming moments of Anthony with captions about each moment♥

 

 

 

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Cutie! Please excuse the cornstarch on my feet!! XD!

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cooking dinner with daddy♥♥

 

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Playing with the pat pat cup lol

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Visiting my mom and taking a walk outside

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Messing with big bro’s eggs lol

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Playing around with the treatment pipe he uses to inhale the solution that clears his lungs

To wrap it up…

 

It has been a long, tearful, and very hard journey, yet, here Anthony is now! Anywhere baby ax and I go, not a soul would ever think that anything was wrong with him, he’s just like any other baby boy, but with extra needs. Our goal is to let Anthony lead the most normal life possible, we just take extra precautions so that he doesn’t get sick. He has hit and passed every milestone and is even walking YES WALKING! He took his first steps at 11 months which is something my older son never did till he was near 13 months! Anthony Xavier is going on 1, strong, and fighting cf every day with mommy, daddy and family there every step of the way! Any questions, good wishes or comments, feel free to write Linda and baby Anthony below, Thank you and be blessed, we made it!!

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