Monday, April 28, 2008

And then, we woke up.......

Mom to Jillian : "Do you have poop in your diaper?"
Jillian: " 'I don't think so', said Prince Eric."

She is now narrating her own story, speaking in 3rd person...AS herself. Anna says, "Jillian! Put that down! It's not yours!" Jillian replies, very matter-of-factly, " 'You were not playing with it so I can have it if I want to', says Ari-la (Ariel).' "

Did I mention we're home??? I know I haven't....so many have emailed or called lately, "I thought you might be home, but I haven't heard.....I'm assuming your home....are you home?" I apologize for not putting this, the biggest news of the past 7 months, out there, but in all the excitement (and the miserable heat of our first weekend back...maybe we should've stuck it out in the nice, air-conditioned hospital for 2 more days!), I have not gotten around to this.

Jill's last day at Miller's was Friday. The nurses and Child Life people on staff that day were all so loving and sweet and wonderful to us....they sang Jillian a cute little song "Hi Ho! Hi Ho! It's off to home she goes!" written by Rose Marie, and presented her with many terrific presents. One of Jill's favorite night nurses dropped off a fun care package, complete with funky sparkly camoflauge bathing suit "I tan do simming at the YMCA!!!!" It was a very happy (and kind of sad) day. Matt, especially after being there for 3 weeks straight, was almost hesitant to leave. He said he felt "institutionalized" and has said a number of times since we've been home, how much he misses the nurses.

So, I feel like I should say something profound, but this doesn't seem real yet. She went home on NO medications (after spending 7 months on 3 daily antibiotics). The only thing we have to do for her medically is to flush her central line with heparin once a day, cover it with plastic when giving her a bath, and to change the dressing covering the line and the caps once a week. It's like, she's nearly a normal kid! We have our first clinic appt on Wednesday, where she will get labs drawn (a lot of blood, to check for leukemia cells, red blood cells, and platelets...she could still need an infusion or two over the next few weeks) and the last bone marrow biopsy and lumbar puncture will be scheduled (outpatient) to make sure the leukemia cells are staying away. As soon as that is completed, we can schedule the outpatient surgery to remove the line. And THEN, I think, this will all seem real. The site will take 3-4 weeks to completely heal, so it looks like I have 2 more months to get bathing suit ready (HA!!!! Wait! Did I say, "HA!"???) At least she's as cute as she is....ain't no one gonna notice my big butt. Whatever. Perspective. That's what I've gained. Perspective. So little of what I really thought mattered before, really does. It's GREAT!

So, yeah, she's been walking around talking like this: "Oh no! Where's my water?? said Belle!" Seriously. It's a little scary (scripting? No.......she's way too social for me to worried about THAT). But I'll leave you with one other funny little story. As we were driving home from the hospital, I looked over my shoulder at her and said, "What do you see out your window?" She looked out the corner of her eye at me and smirked, "Don't tell me what to do." I said, aghast, "I wasn't telling you! I was asking!" She said, smug as I've ever seen her, "Well, I'm not listening. You can fweak out if you want to."

I'm so happy our little girl is home with us for good (knock on wood, say a Hail Mary, throw some pixie dust up in the air), I just might fweak out.

3 comments:

The Maldonado Family said...

I am so glad Jillian is home I know I havent being a good friend keeping in touch but I have had all of you in my prayers and I am really happy she is home!!!

RBasco said...

So glad to hear Jillian is home and that you all survived that horribly long hospital stay. I'm sure you miss the smell of that hallway (not). Congratulations on your pregnancy- and please accept my apologies for not being in touch the last couple of months- I'm sure you didn't notice anyway :) Hello to all of you.. and good luck with all the upcoming tests!
Rodilyn

Anonymous said...

We miss you all too, very much so, but SOOOOO glad that you are all home and that Jilly and the rest of you can live your lives....and prepare the new little one. Hope that all is well at home and the line is removed forever and you all enjoy the YMCA!

Miss you guys! And we especially miss Jilly's smile and singing down the halls...it's just not the same. Love you!!

~Michelle, RN, PMs