Haley’s Giggle

Happy Birthday, Haley! Yes, she is one year today (june 26th). And what a year it has been for this girl. I had a hard time with what to do about her birthday. I felt strongly that it was tempting fate. However, I think any cause for smiling, celebration, and an ice cream cake would be good for all of us. So on her actual birthday, Anna bought her balloons, and we just had good family time. But we waited for today so we can share the birthday with Grammy, Gramps, Aunti Jojo, Uncle Dave, and baby Lily. I took the girls to the suburbs and we had ice cream cake with everyone.

Also, Haley had her first clinic visit with her Hematologist here in DC. What I really like about him and what I’ve always liked about him is that his sweet bedside manner is only matched by his exceptional knowledge about the blood. For example, he was quick to get us through clinic quickly, since there were so many people there, all potential petri dishes waiting for Haley and her lack of immune system. But just the same, when I asked him how she checked out, he said “well I heard the murmur, but that’s because she’s anemic.” He says the flow of the blood sounds different when someone’s anemic. Then he sketched out the feedback loop between the blood, bone marrow, and kidney, and demonstrated how the missing hormone works. As you all know, I must be well read about everything when it comes to Haley’s health, and it’s doctors like him that make the knowledge emotionally bearable.

Anyway, the kidney is the thing that senses whether or not the body has enough oxygen (carried by the hemoglobin), if it doesn’t, it releases the hormone erythropoeitin to the bone marrow, and the bone marrow stimulates its megacells to pump out more red blood cells. She has the megacells, and her kidneys are working. It’s just the hormone that’s tricky.

There is a difference between the nurses here and the nurses where we were for the transplant.  While I like the nurses here, I really appreciate the nurses back in New York. They were much more kid-friendly, and knew how to work around the kids’ illnesses, not despite them.

We were the guests today.

Funny moment was Uncle Dacve trying to figure out what funny thing to do to get on the funny moment (congrats, you did it).

I can barelymove my hands across the keyboard. WE didn’t get home until very early this am, and the girls woke up only a few hours past that. It is very strange to be back. I’m hoping Lori’s house is nice and quiet and their lives are getting back to normal already. We miss them very much.

Haley and Anna like spending a lot of time together, though as big of a lap as I have, Anna’s not into sharing it quite yet. I made Anna go to camp today. Potty training worked incredibly enough. Her best friend was there, so the transition was as smooth as it could be. Then her best friend’s mom took Anna back to their house so we can put a dent into putting our life back in order.

There were no guests today, other than ourselves.

Funny moment of the day was waking up to hearing Anna pretend to talk to Aunti Lori on the phone…

Anna: Yeah, Aunti Lori, we’re here in Washingtoon. Will you come? Sure? OK! And Uncle Lenny, and SamandJonahandLexiandJosie? I’m here in the apartment. I’ll see you soon. Goodbye Aunti Lori.

Unpacking is just insane. Luckily, Nikki, Lori’s babysitter from New York, is here to help us out with the transition.

Sunday was a wonderful day, heartbreaking, terrifying, and wonderful.

We spent the morning with Lori’s family (wonderful), then went to the kiddie amusement part with Aunt Elana and her family (wonderful).  Then came back to finish packing and said goodbye to Lori, Len and the kids (heartbreaking), and set off for washington to start this next phase of what already is turning out to be quite a challenge (terrifying).  I can’t possibly describe to you the range of emotion that was yesterday, and I don’t quite know how four months can feel so long and so short at the same time. I packed up Sandy and Arnie’s place, what was once a haven and a shield for a little girl with no defenses of her own. I know they said not to thank them in any way, but let me just say this: it was exactly the perfect spot for Haley to be as close to her family as possible without endandering herself. She and her sister were able to get reacquainted without be forced upon one another after being pulled apart. So, there, see? I didn’t say thank you.

 OK, so I’m not going to stop at Day 100. There are much more exciting things to happen in the next few days, as you will all see. When there seems to be no more to the story, I will stop. But i hope you stay tuned for our transition back to “washingtoon.”

Guests Sunday were Aunti Lori’s family, and Aunt Elana’s family.

Funny moment of the day was when Anna said the famous words, “are we there yet?” It was only funny because we weren’t even one block past Lori’s house when she said it.