Haley’s Giggle

5 hours in a car, tons of traffic, and an unwanted detour would drive even the calmest of travelers crazy. Haley of course did nothing but laugh and sing (kelly clarkson of course), and say “i love cars!”  Less than half a good night’s sleep and waking up very early to be one of the first in line for the clinic would make even the best of travelers cranky.  Haley spent the day playing with the other patients, coralling a round of hokey pokey, and trying the wii for the first time (she did bowling. her very first bowl was an 8.).  The only time she cried all was the usual– blood draw (which doesn’t hurt because of the numbing cream i put on the mediport access point but still it takes two nurses now to hold her still), the dreaded blood pressure cuff, and measuring her height and weight. Then, after tea/cheerios snack time with matthew (a fellow toddler transplant patient who needed a double transplant becuase the first one failed), a stroll in a wagon with a new friend, and a visit to the large fish tank, we head home. 6 hours in terrible holiday shopping traffic would make even the happiest of travelers complain at least once. But all Haley did was read “the three silly billies” (her favorite book), and look out the window saying “yay i love trees!”

I start this entry with not the physical or medical aspects of Haley’s progress in the past few weeks, but with the strength of spirit that girl continues to possess.  I once thought she was a fighter. She’s not a fighter– she’s a giggler, not letting the challenges of her day get her down. 

We had a wonderful Thanksgiving, but nothing showed me how thankful i should be then looking around the waiting room.  There were kids on chemo, hanging on their IV poles while trying to get through a round on Wii sports. There were kids clearly in the midst of their medical struggles who had their parents lift their arms to help make a personal pizza and put glitter on masks by the art station. It could always be worse.  It’s not clear what the future holds for Haley, but we are thankful today for where she is now, how far she has come, and the incredible smile and disarming giggle through which she does everything.

And now for the medical stuff. After the allergy test, they suggested I reintroduce soy. So i did (through her feeding tube). The result has been terrible rashes, so bad that she made her feeding tube entry site bleed from scratching the rash around it. We are back to the elemental formula, which takes a  bit longer to prepare, and smells a lot worse than vanilla flavored soy drink, and most importantly will never be something haley comes to drink (it tastes worse than it smells).  With the soy in the feeding tube, it was always the hope that we could get her to drink it, and thus phase out the feeding tube. That will not happen now for a while.

In 8 weeks, Haley has gained almost a pound. This is good news and bad news, as a kid who is on a feeding tube should be easily gaining more than that. The problem (and it’s a good one) is that her activity level is growing: even though her walk is the same (no gait), she is walking alot more, and now she can almost hold her body upside down on the trampoline handle bar (under supervision of course), which requires incredible upper body strength.  We bumped into one of the dance therapists, who was not only thrilled to see how Haley has progressed, but also told me that swinging is a great help to Haley’s walking, as swinging enhances the body’s self-perception and her center of gravity.

Haley started shaking while she was being examined, which she used to do during her transplant days, but until recently had all but disappeared.  Between the shakes and the walking, they decided to give Haley a CT scan, to “rule out” a neurological defect.  If that show inconclusive, they will order an MRI, but we’re hoping we won’t have to, since that requires to put Haley under general anesthesia. 

Her bloodwork was great, which means that whatever she is getting, she’s putting to good use. In other words, she underweight but not malnourished.

Speaking of nourishment, because so many of you have asked, yes, she is eating bacon and likes it. Khadisha (the nanny) makes it at her home and brings it in.  I’m still working on getting her to like peanut butter, since that would pack so much in such a little volume. Thus far, she still hates it. But i’m not giving up. I learned that from Haley.

I’m be posting pictures and videos soon. And promise to give updates more frequently.

And to Shoshana and her son, Hang in there, it’s day 20!

Haley has been in more waiting rooms and hospital gowns than most people in a lifetime. So it’s not surprising that she adapts so well to her surroundings and makes fun of any situation. The hospital gown becomes Cinderella’s gown for the ball, and once I put it on her, i spin her in the doctor’s chair, and poof, we are at the ball. While she’s dancing in the hallways, the “king” — aka Allergy doctor No. 2– presses Cinderella’s handmaiden (me) for an hour about every possible and potential allergen in her life: the foods she eats or doesn’t eat, the clothes she wears, the materials of her mattress, sheets, blankets, what trees we see out her bedroom window, etc.  I pair the answers with a twirl of my hand, and Haley thinks i’m telling a wonderful story. Suddenly, she breaks out into a Kelly Clarkson song (“here i am” is her favorite).  She dances the hokey pokey (sort of), and the “king” and i clap while talking about Anna and what she’s exposed to. The last hour is skin testing, where Cinderella sits on my lap, facing me, while her back is covered in test foods (mostly the ones we already tested for with the blood tests, but the skin test is more accurate). We wait for 30 minutes until everything is confirmed– her milk/beef/soy allergy, and make sure she’s not allergic to any environmental allergens as well.  After four hours, and way past her naptime, the clock strikes and we have to put on our regular shoes and put on our regular clothes because the dance is over and we had such a good time.

The next day is a speech therapist exam that is supposed to take 20 minutes, ending 2 and half hours later.  The speech therapist brings all of her props, though most of them are food related. “Can you point to the boy eating the ice cream cone?” the speech therapist prompts Haley. This is a year 2 question, and if Haley were a normal kid, exposed to such things as ice cream cones, she’d nail it. but instead, she tells the ST that she loves jumping. The assessment places her advanced for speaking, but behind in auditory queues. I did explain that the test might not present Haley with the best options for her. For example, if the picture showed a boy playing with a stethoscope, she’d nail that question. Also, it’s rare I actually tell Haley to point to something, so that word is probably not even in her vocabulary. But I understand the limitations of standardized testing, and agree to expose her to ice cream cones, sandboxes, and of course be sure to ask her to point something out to me. After the assessment, Haley invited ST to a tea party, and sang her the only part of the TI/Rihanna song she knows (oh!”). 

Her eating has not improved, and the pump broke a few days ago, so feeding is still quite an issue, and will be for a long time. I thought if there was any holiday to kick-start her appetite, Thanksgiving would be it. But alas, she wouldn’t even try.  And to force a kid to eat is the surest way to turn them off. 

She was working on her climbing up and down the stairs at grammy and gramps’s house, managed to tumble all the way down (on my watch, i must admit), and wind up with a small scratch on her nose and a bit of the shakes easily calmed down by her crazy aunties.

Through it all, Haley always has a smile on her face and giggle in her talk. She doesn’t know how this will all end, and neither do her doctors. But laughter smiles, and a lot of swinging keep this girl, and the rest of us, smiling with her.

Happy Thanksgiving to everyone, and here’s to always making the best out of the worst situtations.