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Dear Kaylee,

Happy Birthday, my sweet jellybean!

It is hard to believe that one year flew by so quickly. This year has been quite the journey. Let me tell you about all that you have accomplished:

You were born weighing 4 lbs, 15 oz and measuring 18 inches long. Today, you just tip the scale at 11 lbs even, and you are 24 1/2 inches long! You have mastered bringing your hands to mid-line, visually tracking objects in all directions, rolling from your stomach to your back, and you are very, very close to rolling from your back to your stomach. You are also the master at smiling and giggling~ especially whenever Daddy is around. You have learned new sounds– both consonants and vowels– and since getting your hearing aid, your voice has gotten louder and more assertive when you coo. Although you have not mastered these skills yet, you are making tremendous progress on maintaining your head control, pushing up on your arms, and even attempting to sit for a couple of seconds. I know that when I write your birthday letter to you next year, you will have mastered each of those.

Over the past year, you went for many, many different tests and you saw many, many different doctors. None of them really knew about your syndrome, but all of them were devoted to ensuring that you were well-taken care of and received any and all help that you needed. One of those doctors, Dr. Sataloff, felt that a hearing aid would help you hear noises and, ultimately, learn language faster; due to fluid that we discovered was in your middle ear, any sounds you’d been hearing were probably muffled and incoherent, at best. Thanks to his expertise, you now sport a BAHA (Bone Anchored Hearing Apparatus) hearing device, and I must say that everyone who is with you notices how much more attentive you have become to the world around you– not to mention how LOUD you have become, now that you can recognize your own voice. I know that you do not like the way it feels pressing against your head, but the doctor said that the tests showed that your ears were formed and functioning as they should. When you grow a little more– big enough so that tubes are bigger than your eardrum– after surgery, then you will not need a hearing device at all.

Right before Christmas, you were fitted for your AFOs (ankle-foot orthotics). Dr. Zolt came and molded your feet, and just the other day, he fitted them for you. They are a pretty pink with butterflies~ quite appropriate for a little girl who is going to one day sprout her wings and fly (metaphorically-speaking, of course). Daddy and I are hoping that the braces will help you to bear more weight on your legs– enabling you to stand, walk, and even one day run; I mean, you are going to have to learn to run just to protect yourself from your brother…he can be a little wild man!

Kaylee, you have the most incredible group of supportive caregivers and therapists; my eyes tear up when I think about how loved and how special you are in their eyes.

Miss Devon is your private PT, and she is Mommy’s rock. She is the one who has been helping me navigate the plethora of devices– aka: “Durable Medical Equipment”– that I need to provide for you. She connected us with Dr. Zolt, and she will also go with us in May to the Abilities Expo to try out and find you the perfect adapted stroller and adapted car seat. She has assured me that you will fulfill your greatest potential for as long as you are in her care. I know that she speaks the truth.

Misses Jean Marie, Beth and Missy are your private OT’s, and they love and adore you, too. Each one brings a special insight to help you grow and develop to be the strong, capable girl you will one day be. For example, Miss Jean Marie took special courses in kinesiotaping, just so that she can help provide you with greater muscle input. Right now, they are working with you to fix your inverted wrists, which is most certainly a significant factor in why you are struggling to push up on your arms. With their help, you will just continue to get stronger.

Early Intervention started working with you when you were only a couple of months old, and boy how far you’ve come since then! Miss Tracey and Miss Marianne come twice a week to daycare to help you improve your gross and fine motor skills. Mr. Craig comes once a week to assist you in feeding therapy. You have graduated from Stage 1 and Stage 2 foods to Stage 3…depending, of course, on the texture. Since you have not yet broken any teeth through, there is nothing to help you chew through tough textures; however, you sure do know how to gum your food well. We are hoping that Mr. Craig will add another day to your schedule in 2011 and begin actual speech therapy. Mommy dreams of hearing you say Mama one day. You came close with an M-sound a couple of days ago, so who knows?

The Learning Experience has been just that for us– and what a glorious one it has been! Despite initial fears over your syndrome and the implications of what it could mean for them, you were welcomed into their “home.” Not a day goes by that the director, assistant directors or teachers do not gush about how sweet you are or offer to take you home with them (like Mommy or Daddy would ever allow that!!) You have some really special teachers: Miss Barbara, Miss Rachel, Miss Danielle…but the one who holds your heart (and you, hers) is Miss Jazmine. The two of you share an incredible bond that is so special~ I do not think that I have ever seen two people more closely connected in soul and spirit. I never have to worry for a second if you are being taken care of, because I know that as long as Jazmine is in the room, you are safe…you are comfortable…and you are loved!

Kaylee, I am sorry that you won’t be having a big birthday party this year. It is not that I didn’t want to throw you a big bash. Your 1st birthday was even more significant and reason to celebrate than most children’s would be…your life is a miracle worthy of such a commemoration. However, Daddy, Ryan and I will all help you blow out that candle today, and we will all cover you in kisses and hugs~ letting you know that we are proud of you…

We are thankful for you…

We celebrate you… and

We love you!!!

All My Heart,

Mommy

xoxo