treefroggirl

posted by Thomas on Jan 17

Originally uploaded by treefrog girl.

My friend Jamie sent this e-mail round to a bunch of us. It made me cry so I thought I would make the three of you that read this cry too.

I thank the universe that Doug has medical insurance otherwise there is no way in hell Amelia would be here today.

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This is sort-of out of left field. But for me this is a really important day, and I just want to celebrate it out loud to the people I love and the people who love Amelia.

At 8:09 p.m. today, Amelia will officially be four years old!(11:09pm Eastern and 10:09 Central Standard)

What’s the big deal, right? Well, some of you were there for this, some of you didn’t know about it when it was happening, and some of you didn’t know us yet, but…

When Amelia was eight weeks old she was hospitalized because she wasn’t digesting or absorbing anything anymore. I started to notice a problem at five weeks, but all the doctors we saw thought that she was just dehydrated. When we finally came to the ER the third and last time, she was lifeless. They ran us straight through triage to a room, and every doctor in the ER was in our room within minutes. They immediately gave her a CAT scan and a spinal tap, as well as a zillion other tests (I might be exaggerating). They had sent us home the night before after giving her IV fluids. I remember being afraid to go to sleep that night because I knew that something was wrong, and the ER doc (Dr. Praeger) knew it, too. He called me at home after his shift and told us to come back. I can’t say for sure, but I honestly think that his call might have saved her life. Wish I knew how to find him to say thanks.

Of course, we ended up staying there. They did abattery of tests. They asked us questions like, “Have you been exposed to any reptiles?” and “You’re not cousins, are you?” After exhausting hundreds of possibilities, her gastroenterologist told us that she had autoimmune enteropathy (beyond rare), and the prognosis for that disease is 2-4 years.

Until this week, I didn’t really realize how much that idea affected me, even though I knew that they had already decided she didn’t have it two years ago. Truth is, they didn’t know what she had then, and they still don’t. All we know now is that she gets a little sicker than other kids, and more often…but it’s manageable.

When she was two, her three doctors (each separately) sat us down and gave us this speech about how amazing it was that she was alive and well. They all seemed genuinely happy (and a little surprised). I had forgotten how grim it looked and I never really knew exactly what they had been thinking. They have good poker faces. One day in the hospital, however, they must have all talked to each other and agreed that she most likely had this really awful thing called congenital microvillous atrophy. Something that would have required a bowel transplant that would have kept her alive for two years or so. Anyway, their poker faces sucked that day. I knew something was up well before they talked to us about it. One of them said, and I’m not joking, “maybe just play her some Mozart or something.”

So we did.

Later that day Dr. Cynamon told us what they were all thinking. They took some cells they had collected from her large intestine and sent them to the most powerful microscope in the United States. It took about four days to get the results back, and I’ll never forget the way Dr. Cynamon came running into our room at 5:30pm on a Friday to give us the great news…out of breath (from basically running there) he said, “It’s not that!”

Happiest moment of my life. Incidentally, Doug’s happiest moment is when she got her PICC line out (IV straight to her heart – dangerous because of the serious risk of infection – which was how we fed her until she was about 6 months old).

We lived in the hospital for a month. While we were there, we met several other families with children who had chronic conditions and diseases. Parents of children with Leukemia and Sickle Cell. Parents of children who couldn’t walk or couldn’t breathe. There was even a little baby girl, a foster child, who had down syndrome and nobody was ever there at all. I would visit her. It broke my heart to see her there all alone.

All of them thought that Amelia was the sickest. The doctors, the nurses, and the other parents all felt helpless. As days went on and no answers were found, hope dwindled. They sent us counselors, came to hang out in our room and brought us presents.

A month of needles and heel sticks and IVs and starvation. Antibiotics and Steroids and Barium. X-rays and ultrasounds and catheters and biopsies. A colonoscopy, an endoscopy, a CAT scan, a spinal tap, a PICC line. Daily blood, stool and urine tests. Immunologists, Dietitians, Gastroenterologists, Pediatricians, nurses and counselors.

And no answers. Never any answers.

The following few months we fed her TPN (Total Parenteral Nutrition) through her PICC line (at home). They also let her have a few ounces of Pedialyte to keep her sucking reflex, three spoonfuls of applesauce a day to get her crushed sulfasalazine into her system, iron (yummy), and Prednisone.

Eventually they let her have an Amino Acid based formula (Elecare). It’s $30/can and tastes awful. But she didn’t complain. She almost never complains. In fact, when this all began, they kept asking me if she cried a lot. Because the answer was no, they weren’t too concerned. She’s had a sinus infection for three months and I only knew about it because every once in a while she’ll mention that her head hurts. Instead of complaining about her situation, she says things like, “I want to go get a shot from Dr. Biederman…but not that other Doctor.” She’s not such a big fan of Dr.Green because she often asks us to go for blood draws. Amelia doesn’t mind shots, but blood draws are another ballgame.

And as you all know, we now treat her “condition” with diet alone. A fact that her doctors are just astonished by. Dr. Green has been considering writing it up because it is truly a unique case.

Amelia understands her diet. She doesn’t mind that she can’t eat almost anything she sees the other kids eating, and she has never tried to sneak food she can’t have. She asks us if she can please have stuff like broccoli, and yesterday she fell in love with carrot juice.

What’s my point with all this?

Well, she’s four and she’s NOT dead! How great is that!!

Oh, but don’t give her a Dorito, because that actually could kill her.

I feel so genuinely blessed to have such a beautiful, healthy child. When I think about those other kids on the 4th floor of Cedars-Sinai back in March 2004, or the ones who are there today, or when I think about what could have happened if this had happened 10 years earlier, or even 5, or if we had gotten the wrong doctors, or if my mom hadn’t told me that if I thought something was wrong, something IS wrong, or if Dr. Praeger hadn’t called me that morning, or…

Well, let’s just say thank God for Science, thank God for miracles, thank God for my sweet, beautiful, lovely baby girl, and thank you for taking a moment to celebrate her life with me!

Love to all,
Jamie

ps – I’m attaching some photos of Amelia with her first ever birthday cake & cupcake (made possible by our dear friend Elizabeth – Thanks again!) – i totally cried about it, since it really was so very special