Friday, December 28, 2007

Holiday 2007

Here are some Christmas Pictures (and more) for your enjoyment:

The McCarthys, Christmas 2007

If you read about our Back-yard excavation project, you can see a bit of it out the window.

Uncle Gary ans the Traditional Christmas Pants (My dad wore these for YEARS until they were handed down to my brother Gary). Kaitlyn really loving her "Christmas hanger" See, we didn't need any presents!

Boys-will-be-boys....A little tequila holiday cheer tradition Christmas Day at my Step-family from LtoR: Mark (step-sister's Ash's husband), Derek (Step-sister Whit's husband), Brian, Gary (my brother), Dick (my dad), and Brad (step-brother)
Brian, Kaitlyn and Uncle Gary
More than opening the presents, Kaitlyn loved jumping on them with her "Christmas hanger"
Christmas Day Family

Kaitlyn having fun in the mall after Santa Picture
She loves to run around

Look at that big smile!

No snow here, but there's always wishing...

Kaitlyn "working" at the Bay Area Discovery Museum 2 days before Christmas
Dad and Kaitlyn as the Discovery Museum

The mall Santa, she amazingly wasn't afraid

Uncle Gary (my brother) Kaitlyn and Liz on Christmas Eve at a very decorated house in my neighborhood
Kaitlyn on Christmas morning with her new Trike
Actually getting the "concept" of presents
Making Christmas cookies at home
Mom helping Kaitlyn decorate cookies at our neighborhood Winterfest
Egg Nog, Yumm! No, wait, that's a cup full of vomit! Ok, to end on a "special" note, this vomit was from yesterday. It was SOOO huge I had to weigh it, 7 ounces! Oh lord, when will it end. All that work to get the food in frustrating!

Friday, December 21, 2007

Happy Holidays 2007!

Happy Holidays to you and your family! Wow, 2007 certainly flew by! And what a year it’s been.

Update on Kaitlyn:

Kaitlyn turned 2 on October 4th this year, although, technically she really won’t be 2 until January 4 which was her due date. (Developmentally, she is still being tracked according to her due date.) We feel so touched and blessed to have our little miracle in our lives.

It’s hard to believe that our miracle daughter who weighed 1 pound, 10 ounces at birth is now almost 24 pounds and 33 inches tall. She’s doing amazingly well for how sick she was. She is walking (and running) all over the place. It’s very cute when she tries to jump, but can’t get off her tippy toes.

She’s incredibly good-natured, and is starting to smile a lot more. She has the sweetest personality. She rarely gets upset, unless mom leaves. Sadly, dad isn’t very happy about that, but we think it’s a good thing that Kaitlyn finally bonded, as if you remember, her first year she never once smiled and avoided looking at us. (It’s helped that she got glasses in the beginning of the year and loves them!)

Kaitlyn also has been talking now for a number of months. Her voice is either very quiet/sweet sounding or raspy, as her left vocal chord is paralyzed (permanently). We were so ecstatic once we finally heard her sweet voice. And it is very sweet! In addition to saying “bye-bye X to everything” She’s just started putting some small sentences together too, like: “dark outside”, “yellow lamp,” “Mama car”, "Papa car", "help peeze." She has a huge vocabulary, I’m always amazed that she knows some of the things she does, and she knows a lot of words in Spanish too! Even more amazing, Kaitlyn has learned the entire alphabet by sight and sound. You can point to a letter and she’ll say the letter as well as say the phonetic sound. She’s even starting to know the letters in order. She’s one smart little lady!

Unfortunately, Kaitlyn does still have some issues, primarily around eating, lungs and her sensory system. Kaitlyn still vomits a lot. We were able to successfully transition her to a Blenderized Diet (real food in a super-duper blender) that we “push” manually through her feeding tube. She still didn’t eat anything orally, but this decreased her vomiting a lot.
Starting in July Liz researched and located a very specialized feeding therapist who does an intensive feeding therapy program based out of the home. After an intense battle with our insurance company we were able to get this expensive therapy approved and after the first week Kaitlyn started eating 80% orally!
This was huge! Kaitlyn can only “eat” purées, and unfortunately we have a ways to go for her to get the concept of “chewing” without gagging and retching. Her 4-5 daily feeding sessions require a lot of work on our part and often times all our work is in vain as she continues to vomit (for unknown reasons). We still feed her throughout the night with her feeding tube manually to get the extra calories in her. It’s a constant struggle. Her weight growth is hard-won.

Lungs. Kaitlyn does have Chronic Lung Disease, so we are still hyper-diligent about her catching colds, but we are not under “hibernation” orders this winter which is glorious! I can actually take her to the store – what a concept! Whenever she gets sick, her oral intake of food drops to 0 and her vomiting increases horribly. She typically looses over a pound. We are currently on our 4th cold of the winter already. We have to give her round-the-clock breathing treatments and we hope/pray that it doesn't go into pneumonia. She is still getting winter monthly ($2.5K each mo) injections of a drug to help ward of a life-threatening virus called RSV. Thankfully, knowing how sick her lungs were at birth, we’ve been very, very lucky. Kaitlyn has never once been re-hospitalized, which is a huge accomplishment.

She in fact has been sick the last week and has lost 1.5 pounds! So much for finally reaching 24 pounds, now she's back under 23 pounds again. It's so frustrating. She's on antibiotics for an ear infection. She coughed for 30 minutes straight (without stopping) that I thought we were going to be on our way the ER, but thankfully the breathing treatment did it's job. I thought I was going to have to pull out the oxygen.

Developmentally. Kaitlyn is doing extremely well. She is a bit behind on her motor skills (from her adjusted age), but she is doing so well in this area that we are dropping her Physical Therapist. Her primary issue at this point is that Kaitlyn has some mild Sensory Processing Disorder (SPD - in a way it’s on the autism spectrum). Kids with SPD either seek out or avoid sensory input. Kaitlyn is a “seeker”. Her system needs much more “sensory” input than a regular person. She is constantly on the go, has a very hard time sitting in one place, rubs up against things, even sometimes lightly bangs her head and spins. She is starting a new weekly therapy after the first of the year to address this.

Kaitlyn keeps us very busy. This year, Kaitlyn had approximately 200 therapy appointments and 20 Doctor Appointments. (She has therapy 4x a week, plus the intensive feeding therapy) Not to mention the vomit and feeding sessions. Oh, and the fact that she’s an active toddler!
Thankfully we found an amazing helper, our nanny Julia has been our live-saver! I can’t say enough how much she has helped keep my sanity.

Brian still loves being a fireman. He will be transferring to Station 1 (downtown SF) after January, he’ll be on the truck and will get very little sleep (as it’s the busiest station in the city). He’s also been hard at work building a “rock-crawler” project that is currently housed at his friend’s house up in Tahoe.

Starting in the fall Brian began a back-yard excavation project where we doubled the size of our back-yard. He has put in one concrete retaining wall, with a 2nd still to come. It’s been a LOT of hard work and much more $ than had hoped.

Liz continues to love being a Real Estate Broker and even with the market-downturn, had a great year and making a lot new client/friends in the process. Liz constantly researches out therapies and solutions for Kaitlyn as well as manages Kaitlyn’s busy schedule. Liz serves on a board as VP of Membership for the Women Council of Realtors in Marin. The micro-preemie support group she started last year now has almost 200 members, globally. She is in a feeding tube support group and is involved with fund-raising the March of Dimes in prevention of prematurity.

As a family, we went on our first trip via plane over the summer, we traveled to Chautauqua (Western NY) and spent 10 fabulous summer days with the McCarthy’s.

Love & Peace: Liz, Brian, Kaitlyn and her much-missed angel sister ^Corinne^.

Thursday, December 06, 2007

Happy Thanksgiving to everyone!

A rare picture of my mom and dad together, with their grand-daughter. Taken in LA over Thanksgiving weekend. And rare because Kaitlyn is smiling!
Grandma Corinne and smiling Kaitlyn!Grandpa Poppy and once again, a smiling Katilyn. I think this is the most smiles we've had captured on film in a long time! Guess she needs to be around her grandparents more! :)
Grandpa Poppy helping Kaitlyn on the piano

Our little one reading on the potty (taking after her father). we've had a few more peepees in the potty, but still have a ways to go to being toilet trained!
Happy Belated Thanksgiving!

Here’s a quick run-down of recent events with the McCarthys:

I went to Las Vegas for a work trip for 5 days in mid-December (Kaitlyn was NOT very happy to have mom gone).

Upon returning, I worked 2 days straight with an out of town home buyer, then left the day after that for Los Angeles for Thanksgiving. (Just Kaitlyn and I, as Brian had to work on Thanksgiving). We drove to LA from SF. Quite a feat. Kaitlyn had just caught a cold too, so lots of vomiting, no eating, made for a really fun (and LONG) drive.

Sadly, on Thanksgiving evening, my Step-Grandfather George passed away. He was 98 and had been very sick for the last 6 months, but it was very hard on everyone. My mother was so torn, as she rarely gets to see Kaitlyn, but there were so many things to do to support my step-father, Rich. It was a very sad time for all of us.

I decided to drive home late on Sunday to try to avoid the Holiday traffic, so I left LA at 7:30pm and made it home at 2:30 in the morning. Much easier driving with a toddler while she is sleeping.

The next day my nanny was working elsewhere and I was a stress case as on Tuesday I had to give a presentation to 65 people which I haven’t even started yet! Our nanny was able to come at about 1:00. So I started work on my presentation. At about 5:30 pm, she came to my office in tears. She was in terrible, terrible pain. (I felt horrible that she was watching Kaitlyn and I hadn’t even realized she was sick). She ended up having to go to the Emergency room, and was admitted with gallstones and an enlarged pancreas. She stayed for 3 nights.

Brian had to work on Tuesday, the day of my presentation, and now I found myself without childcare. What in the world was I going to do? Thankfully, my wonderful friend Lucy helped me out, and I brought Kaitlyn to her house and said, if she can eat a bite or two of yogurt that’s fine with me.

The day finally ended and can I tell you I was exhausted! I don’t think I’ve slept in 3 weeks.

Our nanny wasn’t able to work for a week which meant not much work for mom getting done.

She’s sort of part-time now, while she’s still dealing with a lot of medical issues.

It’s made me realize a few things:

I don’t know how working mom’s do it? Without help, I’m a complete basket case. By the 5th feed of the day I’m so frustrated, cleaning up vomit. Taking her to her multiple therapies each week and then using my one hour of nap time to try to get something done….

I’m so lucky to have such a wonderful care-giver. Now that I’ve gone without her again, I am so much more appreciative of her help and love for Kaitlyn.

Kaitlyn now no longer likes me to leave her side. I think it was due to my going out of town for 5 days. She’s a basket-case if I’m away from her, but this is typical toddler behavior, which is a great thing if you know Kaitlyn’s history of not-bonding.

Kaitlyn is no where closer to understanding how to chew. She’s continue to gag and vomit and/or swallows food whole. She is still eating purees like a champ however, but we get terrible refusal behavior if we don’t have her DVD to watch. I cant’ wait until we can get rid of that distraction! I feel like a HORRIBLE mother when I have to feed her in public and I whip out the DVD. Oh, if they only knew that just a few months ago she ate nothing at all!

Well, that’s about it for now. I know you’ve all been anxious for some news.