Baby Barrett Updates

Adrian Abraham Barrett

My journey, from the womb to the world…

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Stupid White Blood Cells…

Well, after going to the hospital every few days to keep getting poked so they can test my blood, my WBC count is still low. It’s not as low as it once was, so it’s better, but per the phone call today from the CF Clinic it’s still not within the normal range. So while I’m only 11 months old (since yesterday), I’ve been poked almost two dozen times in my lifetime…and counting.

I’ll try to remain optimistic,

Adrian

Published by Baby Barrett, on January 11th, 2010 at 3:16 pm.

Goodbye 2009…

Mommy and Daddy let me stay up until midnight last night to watch the ball drop in Times Square with Ryan Seacrest and Dick Clark. I bounced to the music and tried to crawl away a few times. I gave them both a kiss at midnight, but Daddy got a good wet one from me (I had my mouth open and full of drool, right on his lips). I smiled and laughed during it all.

While it’s the end of a year, it hasn’t been a full year for me yet (I have to wait until February). A lot has changed in the year. I look back on it and am amazed with all the progress and how much I have grown. I started the year in the womb, and when I was able to explore the world beginning on February 10th, I spent it with an extra couple days in the hospital (ironic, knowing everything I know now). The doctors were just waiting to make sure I didn’t get sick since the placenta had such a severe infection, but I was fine. I spent time under the lights with my sunglasses to help reduce jaundice. When I got home I rarely cried. In fact, it wasn’t for months until I really cried much, but by then I was more alert and knew what was going on and learned that crying would get me something. I slept through the night right away, and was up to at least 8 hours straight around two months old and soon extended to 11 hours straight. I outgrew outfits in record time, and Mommy was struggling just to get me in each one at least once.

However, it was at six weeks old when Daddy got the call about the CF. It changed a lot of things in our lives, and we are all still trying to adapt to the changes. It also brought about good changes, Mommy gets to stay home with me each day, and I’ve met a lot of great people that care for me. My pediatrician and nurse have saved us literally thousands of dollars, by giving us unlimited amounts of formula to supplement the breast milk and only charging us for nurses visits (with no co-pay) whenever possible. While the CF is a constant struggle, we remain optimistic that progress will be made, and possibly even a cure. The VX-770 drug which targets my specific genetic mutations is in clinical trials and is doing very well. It actually modifies the DNA by simply taking a pill, and I can even pass the sweat test that is used to diagnose CF. I really hope it is a success and that I can soon take the pills myself. Thanks to the research of the Cystic Fibrosis Foundation, many potential treatments and cures are in the works.

Moving on from the CF (as I wish I could in daily life), I’ve learned so much in 2009. I’m crawling and pulling myself up on things and I babble all the time. While I sit and play with all my toys, I also love to explore things and will crawl everywhere to check things out. I have no fear yet, so light sockets, stairs, the cat, cords, and heavy objects are all still of interest to me much to my parents dismay.

I’ve had several visits from family and I had my first trip out of the state (to Arizona) for Thanksgiving. I plan to see family again next month, and they can watch me and all my talents.

I look forward to 2010 and plan to have a great year.

Happy New Year!

Published by Baby Barrett, on January 1st, 2010 at 11:08 am.

My Secret Santas…

A little Christmas miracle has come upon me and my family this year, as over the last week, we’ve been receiving packages in the mail from family and friends to provide us decorations for our tree. Our Christmas decorations were taken from us, and while most could be replaced, funds were diverted to my medical bills instead. So others, who I dub as Secret Santas, stepped up and made my first Christmas very special.

I received all kinds of ornaments, a shiny reindeer, an ice skating snowman, a set of Santas and snowmen, a child with Santa, a bugle boy (I like to think it’s the Boogie Woogie Bugle Boy of Company B), two picture frame ornaments (I’ll have to pick cute pictures to put in them) a star with my picture on it, and a cute little snowman that has my name on it.

So while I do my laps across the floor (mommy and daddy figured out that it makes me tired faster), I glance every so often up at the tree to look at the decorations. It’ll be neat to know they will be there every year going forward, and they will have a lot of meaning knowing they came for my first Christmas from all sorts of people, some of whom I don’t even know.

So while Mommy and Daddy tell me about the Golden Rule, and how I’ll be able to do such a thing for people someday, I thank everyone again for making my first Christmas special.

Daddy is going to take me upstairs now and read me The Night Before Christmas.

So Merry Christmas To All, And To All A Good Night…

Published by Baby Barrett, on December 24th, 2009 at 10:58 pm.

My First Thanksgiving…

I know it’s a little past November, well, actually yesterday was the winter solstice, but I’m a busy kid, okay? I traveled all the way to Arizona for Thanksgiving. I was there for six days, spent time with my grandparents, and had a dinner just like everybody else as I had Turkey and Sweet Potatoes! I also got my CF add-ins of salt and olive oil!  Note my cute Thanksgiving bib that Aunt Joy gave me!

Mommy and Daddy were able to eat at Culver’s a couple times during the trip, and I was able to see my cousins and have fun.

I sat on Santa’s lap, and I was able to tell him that I was a really good boy on the 12-hour drive to Arizona, and I was also good on the drive home.

I got some early toys from Grandma Ann, which kept me entertained both when I was there, and on the drive home.

It was pretty busy all the time, so I was happy to be home in my bed the next week!

Published by Baby Barrett, on December 22nd, 2009 at 1:55 pm.

The Incredible, Edible…Band-Aid?

My first foreign object has been successfully swallowed. I coughed a bit, but I got it down without a problem. Mommy and Daddy weren’t too happy though.

Last week I had a CF appointment at the hospital. A couple of days ago they called daddy to give the results of the tests as always, but this time they said that my white blood cell count was low, and that they wanted to test it again. So yesterday we went to the hospital to draw my blood. Now that we know the secret to use my foot and a small syringe we thought it would go well. It didn’t. They used my foot and were able to get blood, but they called a few hours later to say that it clotted and couldn’t be used. So we went back again today. This time they just pricked my finger and I didn’t even cry. They got the blood they needed and we even waited a few minutes to make sure they got enough and that it didn’t clot. After they confirmed they were good, we left the hospital. However, the phlebotomist (I know, big word for a kid that’s not even 10 months old yet) put a small band-aid on my finger to stop the blood. Mommy and Daddy both said that it was going to come off. But, like the inexperienced parents they are, they left it there. So I proceeded to eat it not 30 minutes later. Mommy shoved her fingers in my mouth and into my throat, but with no success. Daddy was getting his hair cut so he wasn’t able to experience the event first-hand. It’s already on it’s way through my system, and mommy plans to go diaper diving for the next few days to watch for the band-aid. It was just a little button band-aid, so it should have no problem working it’s way through and will be in the diaper soon.

Regarding my white blood cell count, the normal range for neutrophils is between 1,500 – 10,000. Mine was 800 last week and today it was only 400. Anything under 1000 is bad, but under 500 is considered critical, so they called my CF doctor at home to let her know. She called Daddy to explain everything. If I get a fever I’m to go to the hospital immediately so I can get an IV, antibiotics and whatever else I need. The concern is that I don’t have enough white blood cells (neutrophils) to fight off any infections. They are going to test it again on Monday to see if changes (and hopefully goes back up). They said all other tests look normal, so they don’t think it’s leukemia. We will now try to determine if this is a short-term thing, or if it lasts for a longer period of time.

Needless to say, as if the CF isn’t enough because of the effect it will have on my body, neutropenia (the lack of the white blood cells to fight an infection) would be a double whammy.

So, say it with me… “no whammies, no whammies, no whammies, STOP!”

Published by Baby Barrett, on December 5th, 2009 at 6:11 pm.

My First Halloween…

I wasn’t a Mac, I wasn’t a PC, I wasn’t even a Linux. I was just a penguin. Just a cute little penguin.

We had a Halloween party last night which I thoroughly enjoyed. Everybody came up to my room to distract me during my breathing treatment. And daddy, as tipsy as he was, did the Hokey Pokey to keep me happy. I watched a lively debate about whether it is wise to castle before you have developed your pieces in a chess game, and everybody was eating at the table while I was eating as well.

I sat out on the front porch tonight and watched all sorts of people come to the house. You know the decorations at our house are good when people slow down when they drive by, and people stop to take pictures.

I went trick or treating and while I only went to one house (the one across the street), I got one piece of candy this year. Daddy said he’d keep my Butterfinger safe for me.

Published by Baby Barrett, on October 31st, 2009 at 11:25 pm.

Favre = Football

Daddy and I watched Brett Favre work his magic today as he is now 6-0 for the season.

Oh, and mommy wants a correction, she is not threatening to take away my pacifier for several months.

Published by Baby Barrett, on October 18th, 2009 at 10:52 pm.

What’s The Difference Between The Bird Flu And Swine Flu?

For the bird flu, you get a tweetment, for the swine flu you get an oinkment.  Yeah, well, dad thought it was funny.

My parents and I got our H1N1 vaccine this morning, and I weighed 19 lbs, 8 oz.  I’m still hovering around the 50th percentile.  And at my last checkup, my height, weight, and head circumference were all balanced.

These days I love to bounce in my exersaucer, and once in a sitting position, I can stay there and play with things around me.  While I can’t crawl yet, you still have to watch me.  The last few days I’ve been known to move across the room and grab at mommy’s laptop power cord.  I like to make plenty of sounds, saying ‘mama’ over and over again.  Sometimes I’ll just let out a loud squeal just because I can.

In other news, I hear mommy threatening to take my pacifier away and to not even let me have it when I lay down for bed.  We’ll just see how that works out.

Published by Baby Barrett, on October 15th, 2009 at 9:13 pm.

Potential CF Cures…

Mommy and daddy are enrolling me in my first clinical trial.  I will be inhaling a concentrated salt solution (hypertonic saline) twice a day which may help to thin the mucus in the lungs.  Researchers have found that surfers and those that breathe in the salty air from oceans and other saltwater areas have less problems than others.  It has been tested for ages above six, and decreased the need for antibiotics for acute respiratory infections, improved lung function, and increased the quality of life.  They are now going to begin testing it for those under the age of six (which includes me!).

Another exciting milestone in the search for a cure, is one of the most promising potential therapies, VX-770 (developed by Vertex Pharmaceuticals).  VX-770 is a compound to that has the potential to be one of the first drugs ever to treat the basic genetic defect in cystic fibrosis and is now moving forward in clinical trials.  It addresses the G551D mutation which is one of my two mutations and it has already been tested by adults.  It is now beginning to be tested for patients ages 6 – 11.  Once the studies are complete, the FDA will determine if VX-770 is safe, effective and acceptable for approval.

I hope it continues to succeed and work it’s way down to my age group!

Published by Baby Barrett, on August 7th, 2009 at 1:32 pm.

CF Down Under…

Just a picture from one of daddy’s friends that shows CF isn’t limited to the US.  While the US has about 30,000 with CF, the rest of the world has another 40,000.

This picture was taken in Sydney, Australia.

Published by Baby Barrett, on August 7th, 2009 at 1:02 pm.