Haley’s Giggle

I have heard from many of you asking for an update to the blog, and the truth is i’ve been very reluctant to do so.  It has been nearly one year since the first entry of this blog. And this year has inched by. One day, we may all look back at it as a hill in rear view mirror. one day…

The reason I have not written is because the actual day-to-day of Haley’s care is very consistent: she receives oral medicine approximately 5 times a day, once still at 1 a.m., and she also now receives topical medication twice daily. This is for her skin, that some of the doctors are still holding out hope that it is not skin GVHD (Graft Versus Host Disease, is basically when the graft is in, but now the body will fight it. The implications are some affliction to a part of the body, in her case, the skin.  It could be fatal, but I REFUSE to think about that. EVER.). Every ounce of skin is monitored 24-7, and it is often the case

 Since she’s been home, she has been examined for early intervention, which means that they tested her physical, emotional, speech, and mental capacities, to determine whether or not therapy for any of these is necessary for her development.  At the time that they tested her, she wasn’t even crawling and could barely speak a few words, both of which are signs of delayed development (duh), since she should be walking at this point, and speaking short sentences. Of course, though, when they tested her cognitive ability, it was at a 3-year olds level (which isi also a no-brainer considering all of the things she’s just been wathing abd absorbing like a sponge).

We go up to New York every six weeks (it would have been further and further apart, but her skin condition requires more frequent visits).

 Another problem has been her weight. She’s abrely gained anything since we’ve been home– all she’ll really eat are milk bottles, dry cereal, pretzels, crackers, and soups. And before you all suggest things, I promise you we’ve tried everything (and if you know my mother who cooks like nobody I’ve ever known, she could verify). We are currently seeking a gastroenterology (stomach) consult to determine whether or not there is an actual medical problem, or she is just still so averse to putting things in her mouth (the upside to that is she just discovered crayons, and actually draws  instead of puts them in her mouth, which is the more normal reaction for her age).

Haley’s exposure to other people and the outside has expanded, though remains somewhat limited, given her skin developments.

 Anna and Haley have resumed a normal sibling relationship, although Anna is probably a bit more sensitive to her than most 3 year olds are to a 1 year old. Plus, now there’s no fear of Haley getting scratched or bruised, so I’m less fearful of the “playfulness” of an older sister. And most days, when We bring Haley in the car to drop Anna off at pre-school, Anna kisses Haley and says, “feel better!”

I will be posting updated pictures very soon, so stay tuned!

Haley continues to light up the room, and the world- that is, whenever she gets outside. For those who haven’t yet Haley, please stop by… from wherever.