Haley’s Giggle

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 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.  We 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.

that propeller twirls!

After three years, Haley finally celebrated a birthday simply because she was born.  Medical repurcussions of the bone marrow transplant has made us all careful about celebrating anything about Haley too soon.  But while planning big sister Anna’s birthday party, Anna insisted that if Haley wasn’t going to have a party all her own, she would share the day. “She better like hello kitty, though,” was Anna’s caveat.  So be it.

The party was a joint Anna/Haley Hello-Kitty SlipnSlide party at Grammy and Gramps.  Many friends and family came around to slip, slide, and celebrate, and place was awash in Hello Kitty.  After three years, it felt good to sing to Haley other than Diana Ross, Bob Marley, or Mindy Smith. 

Haley also had her own celebration this past Friday, with a few friends and family.  Just as Anna had a hello-kitty cake, Haley had a Pablo (backyardigans) cake.  Thank goodness we had a graphic artist on hand to help with his facial expression.

Haley also went swimming for the first time ever (slip n slides don’t count as swimming).  It was wonderful– especially when she scraped the top of her toes against the bottom of the pool.   Before, such a  thing would have sent Haley into the hospital.  Even though she sees her scrapes as a bunch of boo-boos , i see a wonderful web of working platelets. 

Thank you to everyone who helped us celebrate– it was a wonderful “first” birthday for a 3 year-old who has lived about 3 years longer than she was supposed to.