Haley’s Giggle

Today was an outside day. New York City never felt better, and the girls were just too happy being strolled down the streets holding hands. We’ve spent quite a lot of time at this one park, where Anna has been able to grow in strength and confidence as the tackles the various climbing challenges. Haley, however, has to be in someone’s arms at all times. As I have mentioned, I’ve tried to be her personal jungle gym.  And as you will attest, I’m not so very smart, because it’s taken me how many trips already to the park with haley to realize that she CAN experience things, as long as I take her. So, with Haley in tow, I took her on the slides, across jungle gyms, and on the swings.  Of course, I didn’t touch a thing (which, although it doesn’t sound very hard, is quite difficult. Try swinging without holding onto anything but your kid the next time. I mean, try swinging until your child lets out a sound of glee.). Why it took me so long to figure that out, I will have no idea.

The girls have spent a lot of time together, and it’s been nice to see their close relationship get slowly back to normal.

 Guests today were Jenny, Kil, Miles and Cole, who were up from DC (and my mom’s group) to say hello and report back to the group. Anna was very excited to see Miles and they shared a very bizarre game of catch.

Funny moment of the day was at the street fair on Broadway, Anna stopped at a guitar-strapped folk singer. She stood by his side for a half an hour and did her version of ballet. Then when his fainla song was over, she took a bow.

I know you are all thinking that I’m just lazy and grouping my days. But there is method to the madness. The groupings are usually once a week, on the weekends. This week there was a Jewish holiday, so there was another doubling up of days.

The reality of Haley’s separate world is setting in the more we try and do normal things. The playground is getting quite depressing, though we go there because Anna is for the most part preoccupied all the while feeling like she’s hanging out with her sister. But even the mere socialization with other children, younger and older, and feeling your confidence build as you negotiate the infant jungle gym.  I wonder how this separation will affect her. I hope it doesn’t change her giggly self. It will be more and more important that she has Anna to entertain her (and luckily, Anna is the entertaining type). 

We tried out some part-time help this week, so that I can go out and do errands, take a jog, something like that. But the first time Haley saw her (and subsequent meetings), Haley’s screamed at the top of ther lungs.  Haley’s never done that before to anyone, not even to the nurse’s assistants who weren’t always very gentle with her.  Despite her best efforts, part-time babysitter just made it more stressful.  I could barely leave the two of them alone together. I’m sure I’m hypersensitive to my kids crying now, but still. Haley’s default is to smile. So to be screaming so loudly that I can hear it in the elevator on my way up to the apartment is not something I can handle.

 There were no guests over the past couple of days.

First Funny moment was Anna, who just got a new Cinderella dress. Now she walks around the streets of New York City, saying “I’m Anna. I’m a princess.” 

Second funny moment was Anna at the park, spotting a year-old kid, just trying to walk, father right behind her. Anna grabs her hand, and says “you look lost, I’ll help you find your way.”

White Blood Cell: 8

ANC: 6.2

Platelets: 144

Hemaglobin: 9.4

This is Haley. I was told to start all my entries like this because people got confused. Today was an extraordinary long day at the clinic. It started at 5:45 (apparently I wake up exactly at this time every monring, even though I should still be sleeping). And even though the cab ride through Central Park and over to the East Side is a thrill, both Mom and I are tired by the time we make it to the hospital at 7:30. My nurses for the day look nice enough until they take off my shirt and poke that enormous needle in my chest. Luckily for me Mom put a hefty dose of lidocaine on the site so I only scream a little. It’s only 8:45 and the four hour IVIg (immunoglubulin IV) transfusion hasn’t even begun. And it’s a long four hours coming. Thank goodness for Benadryl and Music Therapy.  The Benadryl helped me sleep the transfusion off a bit, and Music Therapist played her guitar for an hour while I slept to drown out the clinic noise around me so the little sleep that I did get was a deep and sound one.

I was awake when Big Picture attending came in to talk about my red blood cells. They’re still decreasing in number, but he says not to worry yet, so someone please tell my mom that. Speaking of Mom, I said “mama” for the first time. It was to Mommy. I haven’t said it again. Maybe soon I will. I also don’t get what’s so great about cheerios and me eating a few. I mean, big deal, they don’t even have a middle.

Guest today in the clinic was favorite nurse. We made a plan to do lunch next week.

Funny moment of the day was Anna, who came to see me. She was dressed as Cinderella. And there wasn’t even a dress-up party.