When my husband and I first learned of Kaylee’s diagnosis, I thought that the doctors had given us a death sentence. Six months later,  I cannot believe how far she has come– or how much I have been inspired– by my little angel. Although she is still small for her age, she is slowly gaining weight. She has started eating solid foods, which means that she doesn’t have the room in her stomach to drink as much as she used to. I guess I assumed that she would start packing on the pounds once she began eating cereal, fruits, and vegetables, but the gain is still slow but steady. At just over 9 lbs, she is wearing size 0-3 clothes, which makes shopping a heck of a lot more fun. There is only so much that is offered in newborn size. She is also gaining her head control– it’s still not 100%, but she is not whipping it backwards with the warp speed she had been in the first few months. She is starting to push up on her arms more readily, and the PT’s are confident that she will one day be able to crawl and walk. I tell them that while part of her 4th chromosome may be affected, there are 45 other chromosomes that are perfectly fine– and those came from two very stubborn perfectionist parents. Nah– there is no way that she WON’T be moving around one day. (lol)

Unfortunately, Kaylee DID begin having seizures in July. She went for a 48 hour EEG, and although there were no concrete seizures to report, there were spikes of activity in her brain to indicate the likelihood of them. So….the doctor started her on Keppra. Time will tell if the Keppra does its job.

Otherwise, Kaylee is just a pleasure to be around. She smiles all of the time, and I think that I even heard her giggle the other day. She is a master snuggler, too, so I never have to worry about getting a cold shoulder (no pun intended). She has reached so many milestones that I didn’t think she’d hit this soon: the smiles, the cooing, the reaching for toys, the pulling of her fingers– and sucking on them once in awhile…each day brings something new.

Each of her milestones have been commemorated on a new Pandora bracelet that my husband gave me for our anniversary. Each new milestone she meets and masters will be celebrated and marked with a new bead; and the hope, of course, is to fill that bracelet and transfer them to a necklace one day. It is a visual reminder of the growth of my child, as well as the gifts of life that most of us take for granted. In the middle of my bracelet is the Buddha– a symbol of peace and a reminder to just stay in the moment.

I have learned to take this journey with Kaylee just one day at a time…and I wouldn’t trade it for anything! <3

 

One Response to Kaylee:6 Months Later…

  1. LeeAnn says:

    Kaylee is so beautiful in those angel wings. I really enjoyed reading the post, I felt the same sentiments you are expressing during our sons first months. I also thought for sure he’d pack on the pounds when he started eating so much more food, and we were even advised to stack on the butter and sour cream and such for him:) He is 14 months now and 14lbs and tiny but doing great. I’m gonna steal your idea for the bracelet, I love it!

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