Haley’s Giggle

That is what Haley answers when asked what flowers smell like. In fact, if you ask her what peanut butter smells like, she’ll say chicken, too. This is because Haley has Anosmia (inability to smell). I mentioned in an earlier bog that I suspected she couldn’t smell, and indeed that is what she was just diagnosed with.  Whether it’s the olfactory nerve itself got damaged or some other part of the process is not clear.

What is clear is that this is a major reason why it’s so hard to stimulate Haley’s appetite. Imagine eating with a cold.  You can taste salt, sour, sweet, bitter, but you cannot detect flavor. You can taste the sugar in ice cream, but not if it’s chocolate or strawberry.  When you chew food, the flavor molecules in the food get released, and as you breathe while you chew, you actually inhale those molecules.  The great thing about this discovery is that to stimulate her appetite, we ahve to think of different means. Visually she might be interested, but then she gets disinterested.  Luckily, I’m up on my top chef, and know how to make an amuse bouche. Maybe Haley’s every meal is made up of 7 different amuze bouches.  of course, not sure how many ways i can combime  matzo balls soup, peanut butter, cashews, and almond milk. 

We have a visit to Sloan Kettering soon, so more updates to come.

As for preschool, she loves it. Ironically, her favorite toy is the medical kit. check out new pictures of haley in school.  the glasses aren’t real.

There aren’t many sights as delightful as a child giddy at the mere thought of something. That was Haley, so excited for her first day of school.  She came fully-equipped: thermos of hot matzo ball soup, cashews, soy-free snacks, almond milk, and tonsand tons of diapers.  the new schedule is school,then physical therapy with the fabulous Jaye. Her day starts and ends with a few spoonfuls of peanut butter, and, too give her even more energy, at the ened of the day so she can’t burn it off, a blast of probiotic smoothie (through the feeding tube, god forbid she should actually want to put it into her mouth).  So far, her favorite thing seems to be playing a pink plastic ruler and singing into the mirror.  The worst part of her day is about an hour into the morning when she realizes she’s not going home any time soon.

 Given the fact that she has never been in any type of class or group play environment for more than a half hour, she’s doing extremely well.  Her school so far is being very supportive, and willing to adapt to Haley’s needs.  We will be retesting her allergies, as well as testing her smell capabilities, and, now that we have found an orthopedist, will be going to her soon as well.  Haley wears orthotics now, and that seems to be a doing a great deal of good, so hopefully there will be no procedures in Haley’s future.  Hooray for this amazing girl, who made it to a small but very important step!

Yes, this is news.  Big news, in fact. This is the first time since Haley was born that she has received a vaccine. Once she had her bone marrow transplant, we had to wait for her immune system to be strong enough to withstand immunizations.  We’re only at the starting gate in terms of all the vaccines she’ll have to take, but it brings us to another piece of big news.  Now that she’s starting to get her vaccines, she can go to school.  With her princess backpack being the first thing she asks for everyday, she’s more ready for school than any of us.  She’s spent literally half of her life in my arms, and although it’s a wonderful thing to watch it, it’s tougher to watch her growing up.

Which brings us to yet another piece of great news.  For the first time since the bone marrow transplant, she has made it on onto her growth chart.  She’s only gained .2 kg, but she’s grown 3 cm.  I attribute all of this of course to her peanut butter/peanut/cashew meals. she still needs her feeding tube, and in fact, we’re asked to grind up food and just push it through, in addition to the formula’s shes been getting.  She’s growing so much intellectually and neurologically still, that she can’t afford to lose calories or nutrients.  The last thing she needs is yet another thing to set her back, and set her aside from her peers. She’s working very hard at walking, running, and jumping.

Which brings us to another bit of news… she’s now going to see and orthopedist.  The orthopedist will set a baseline for her walking, and monitor its progression further. There is always a chance she’ll need leg braces, or even surgery, and it’s good to have someone on track the whole time.

Which brings us to the last bit of news. Whoever the orthopedist is, will be a person who thinks out of the box, and always reaches out for a hug.  Dr. K. Street, and Heartful Hematologist are always there with arms stretched out, even if i don’t offer them first. 

Oh, yes. one last thing. We met up with Favorite Nurse on our way back from Sloan Kettering (check-up, bloodwork).  It was the most wonderful reunion– not having actually seen each other in two years.