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^.


skeybunny said...

Wow Liz--what a year!

This past February is I think around the time I found your blog (via the BD list). I've read the archives and often check back for updates because your writing is so engrossing and inspiring (and Kaitlyn being so darn cute doesn't hurt anything either).

Merry Christmas to your family. May 2008 be filled with much physical and developmental growth for Kaitlyn, and a lot less vomit!

Sarah (mom to Evan, 2 1/2 yrs, CHARGE Syndrome, ex-32-weeker, 95% g-tube fed)

Anonymous said...

Your daughter really is a miracle, and you are amazing parents, so committed to helping her thrive in every way. May God bless your holiday season with her, and grant you the strength to keep up the good work you are doing.
Lori (don't remember how I found your blog, but have read for a long time now)

abby said...


That's a beautiful letter and even though I've been following the blog faithfully all year and was very aware of how far Kaitlyn has come, it's been glorious to read about it all in one place and to see so many gorgeous pictures of Miss Kaitlyn. Have a Merry, Merry Christmas and a Wonderful New Year, guys!


Sarah said...

Merry Christmas! I love Kaitlyn's smile. May 2008 bring you more blessings than 2007!