Catching Up

The past two weeks have been a whirlwind of fun, adventure, and feeling overwhelmingly busy (yes, even for a stay-at-home mom!), so I haven’t had a chance to post much lately. I wanted to give you all a glimpse of what our little family has going on to help you all catch up! I’ll do it mostly through pictures, because… well, it’s just cuter that way.

We had Halloween last Wednesday, which was a success in my eyes, because we got our oldest son to go to more than four houses this year (it was the smallest, saddest little bag of Halloween candy I’d ever seen last year). While I don’t normally condone my son talking to strangers, I do see Halloween as an opportunity to be social to our neighbors, to get a little glimpse into their homes as they welcome you at their door. It’s a night of trust when there seems to be less and less of that in our communities. And I’m happy to be a part of it. Plus, my boys looked pretty darn cute this year.

SWAT Team dude and a fat little tiger!

 

Two days after Halloween, we celebrated my five-year-old becoming a SIX-year-old! We had a nice little party at home for him on his birthday last Friday, and then we spent the next day at Dave and Buster’s restaurant and at the movies seeing Wreck-It-Ralph with our family. He had a BLAST. I feel so blessed that this smart, funny, sweet little boy made me a mom six years ago.

 

 

 

 

 

 

 

 

This week, we are preparing for an event of a lifetime. We got a call last week letting us know that my boys who had entered an art contest for the local chapter of the CF Foundation had WON the contest!! The prize was tickets for our family to attend the big black tie gala, benefitting the CFF! We are getting dressed in our best this Friday night, and we will not only be attending the gala with cocktails, a seated dinner, and live music and dancing, but we will get to go on stage while they auction off my boys’ artwork for the charity! It is such an honor, and we are all super excited about it. A family who is near and dear to our hearts not only purchased tickets for their family to attend the gala with us, but they rented us a night’s stay in the hotel where the gala is being held! My sister-in-law has also graciously agreed to come to the hotel and watch our boys for us after the event, so that my husband and I can enjoy the after-party with our dear friends. We are so blessed. This is truly going to be a night to remember, all because of my two very special boys.

This picture will be printed in the event’s program!

This picture of our little one getting his daily nebulizer treatment (and big bro giving him some loving support!) will be featured on big screen/slideshow during the event! I mean, seriously, they are just precious.

Phew! So much going on, and with the holidays approaching, things just keep getting busier! I try to take a minute or two every day to “catch up,” be thankful, and just breathe. I hope you are able to do the same. 🙂

 

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At Three Months Old…

**Warning: You are about to be bombarded with a ton of cute baby pictures.**

My baby boy is growing, growing, growing! It’s been a while since  I have given an update on him, and I wanted to let everyone know that his health is doing extremely well right now. CF symptoms don’t typically begin surfacing until they are a bit older, but other than an occasional cough, his health is pretty much perfect so far. His weight gain is right on schedule, as his height/weight ratio was at 49% at his last clinic visit, when the Cystic Fibrosis Foundation recommends that it be at 50%. We hope to cross that fiftieth percentile mark at his next visit in September, but that number is up from 17% when he was three weeks old. Between nursing well and the addition of special vitamins and enzymes to his diet, he is growing exactly as he needs to.

Developmentally speaking, he is also chugging along right on track. Although there is a huge range of what is developmentally “normal” (having a baby with special needs has made me dislike using that word!) at this age, all of the things that experts say a baby “might” be doing by three months old, my little guy is doing them.

He’s rolling over from his tummy to his back, and he’s lifting his chest off the ground while resting on his elbows during tummy time.

“What’s up with all the flashes today, Mom?” PS-He LOVES this little radio that sings nursery rhymes and spins when you punch it in the nose.

He makes eye contact and has a lot of coos, giggles, shrieks of joy, and a new “gurgle” sound that he has learned to make. He recognizes his dad, big brother, and me, and he greets us with a big toothless smile!

Talking to Mama.

He’s rolling from his back to his side (this one is very recent!). He has found his hands and loves to put them together or put them in his mouth.

Yum.


He’s swatting at and grasping for toys. He’s opening and closing his hands, and he can also hold onto and shake toys and sometimes put them to his mouth. When he gets ahold of something, he has a pretty strong grip! (Just ask my hair…)

“I got him!”

Another of his faves. We call them Mr. Orange Giraffe and Mr. Blue Giraffe. (Creative, I know.) He pretty much ignores the ball in the middle.

He likes being read to and looking at books. As long as he’s not hungry or sleepy, he will sit still and listen to just about anything I read to him. Sometimes, he likes to give me his input and read along with me. (He is definitely going to be a talker like his brother! And his dad. And his mom… No wonder?) 🙂 Some of our favorite things to read are:

Sandra Boynton books. The sing-song words of her stories are so much fun to read to a baby.

Books that have bright colors and bold illustrations.

Books with textures. He loves making the books crinkle or feeling soft fur.

Magazines. Sometimes I read the articles to him, sometimes I just point out interesting pictures and talk about what he sees.

He listens and looks just as intently with magazines as he does with board books. Babies love real photographs. He seems to particularly enjoy pictures of space, weather, faces, and animals.

And we can’t forget an all-time favorite at this age: Peek-a-boo! He also loves other interactive games and songs like “Pat-a-Cake,” “The Itsy Bitsy Spider,” and this fun exercise game that goes to the tune of “Wheels on the Bus!”

“Where’s the baby….?”

“There he is!”

He loves sensory activities. He isn’t afraid to get messy with paint, crinkle some tissue paper, or splash in water! He also has started following things with his eyes, and he loves to watch me blow bubbles while he’s in the bathtub! Also, with being able to sit supported and better head/neck control, he is able to use his Bumbo seat (or a highchair works just as well) to do this!

“Sorry about the couch, Mom!” PS-As long as it’s washable paint, a baby wipe will probably get it out. Feel free to do messy activities away from furniture and carpet if you want an easier cleanup…

“Hey, that’s a neat sound!”

Some other things he’s loving right now are:

  • Flying through the air like an “airplane” or Super-baby. He just squeals with delight at this game!
  • Going outside. He gets so quiet when we do anything outdoors. We love to sit on the porch or walk around the yard and talk about how the wind feels, what the birds and bugs sound like, and watch a car or two go by.
  • Music and dancing. I already mentioned the toy radio that he loves, but he also loves when we sing nursery rhymes or lullabies. I also like to put on some dance tunes and hold him as I dance around the living room. And other times, I put on some classical music to relax to.
  • Being tickled. He loves “This Little Piggy” and being tickled when the littlest piggy goes “Weee Weee Weee” all the way up to his armpits!
  • The stroller. I went on my first run with the jogging stroller last week (that is SO hard to do!), and while he slept through most of that, he does enjoy a leisurely walk in the stroller, just taking in the world around him.
  • Snuggles. He is doing so many new things, but one thing that hasn’t changed yet is his love of being held, rocked, hugged, and kissed. He’s my little cuddle bug, and I hope that doesn’t change for a while!

So there you have a day in the life of our three-month-old! I hope you enjoyed it, and if you did, I will be posting another one at his six-month mark. It will be here before we know it.


My son and the battle that lasts a lifetime…

As previously mentioned, our new little guy was diagnosed with cystic fibrosis several weeks ago. Today, I want to share with you a little about this chronic disease because…

1) I recognized the name of the disease, but had no idea what it actually was prior to finding out about his diagnosis, and

2) I believe that awareness is vital for any disease.

According to the Cystic Fibrosis Foundation, the basic definition of cystic fibrosis (CF) is:

“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.”

“Beyond” is the key word for our son, as far as I’m concerned. Once I got past the initial shock and devastation of his diagnosis, I moved into a state of determination. Like anyone who is faced with a difficult challenge (and aren’t we all in some way?), I truly believe that hope and optimism are imperative to conquering that challenge. No doubt, we have a long and bumpy, sometimes emotional and frustrating road ahead of us, but we are taking it one day at a time and using the knowledge of our wonderful team of CF doctors to keep our boy healthy and happy.

Some answers to frequent questions that I have been asked (or that I have asked myself!) so far include:

  • We found out that he had CF through his newborn screening. I’m not sure if every state now tests for CF this way, but they absolutely should! As hard as it was to learn the bad news right away, it is MUCH better to find out ASAP than to let a child get behind on gaining weight. Good weight gain means stronger lungs, so the earlier the diagnosis the better!
  • Since our son has CF, that means that my husband and I are both carriers of the disease. Every conception that we have together, there is a 1 in 4 chance of having a child with CF, a 1 in 4 chance of having a “normal” child, and a 2 in 4 chance of having a child who is a carrier like us. The only way to know if you are a carrier of CF is to be tested, as there are no symptoms. There is no history of CF in either of our families, so neither of us knew that we were a carrier prior to his diagnosis. Our oldest son was recently tested and was negative for CF, so he can be tested to see if he is a carrier when he is older.
  • He does not need to be a “kept in a bubble,” but he and everyone he is close to should use good hand-washing and hygiene etiquette, since he is more prone to lung infections. If you have a cold, admire his cute little face from a few feet away please!
  • Exercise is vital for improvement of lung quality for our son and others with CF, so we will be starting at a young age with lots of physical activity. Good thing we are a family who loves sports! I have found a wonderful blog entitled Run Sickboy Run by Ronnie and Mandi Sharpe. Ronnie is truly inspiring as a CF husband, father, and an advocate for the disease. He has an infectious positive outlook on CF and life in general.
  • There are many medications that our son will need in his lifetime. Currently, he takes enzymes before he eats anything (just breast milk for now!), and since an infant can’t swallow a pill, we pour the enzymes from inside the capsules onto a spoon of applesauce. He takes it surprisingly well, although he does occasionally gag. He will have to take enzymes before he eats, every time he eats, for his whole life, so he I’m glad we are starting early so that he won’t know any different! He already associates that applesauce=Mommy’s milk, and he gets very excited (and stops crying) as soon as he sees us with the spoon. Thanks, “Pavlov’s dog!” Since his body has difficulty digesting fat and protein, and certain vitamins need these nutrients to be absorbed, he also takes a special multi-vitamin that is water-soluble. Also, we give him 1/8 tsp of table salt per day, to make up for the extra salt that he loses. We divide it between two breast milk bottles, and he doesn’t seem to know it’s in there!

    These are his current meds.

  • Finally (for now), he also gets a treatment for his lungs called CPT (chest percussion therapy) or “pounding” twice per day. This is to help break up the mucus that gets trapped in the airways of CFers. It takes us about 15 minutes to complete each session, and most of the time it puts him to sleep.

    He doesn’t mind that he’s getting “pounded.” 🙂

So far, we are doing great with all of this. His big brother is a huge help to us, and he loves his little brother so much! While we are embracing his CF, and we never want him to feel ashamed of it, we also want him to feel normal. First, he is our son, a brother, a normal boy with hopes and dreams and fears like the rest of us. Second, he has CF, and that just means that his body requires extra care and attention to function properly.

I will update occasionally with CF topics and to let you all know how he is doing. If you or someone you know has CF, please feel free to follow our journey and let us follow yours! One thing I have learned quickly is that the community of those with CF and their families is a strong one with a wonderful, supportive, and optimistic bond. I’ve never known anything like it, and for that part of this disease, I am grateful, because not all diseases have such amazing support, research, and hope for a cure that appears extremely obtainable.

Feel free to comment with any additional questions or information! Keep in mind that I am new to this, and cystic fibrosis is an extremely complex disease with a lot to learn about it. As with any disease, you should always consult your own healthcare professionals for the best advice! A stay-at-home mama can only know so much! Thanks for taking interest in our journey!