One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, February 13, 2006

oops, rambling

Oh boy. I just re-read my latest posts, and I was rambling a bit, wasn't I? Shock, I guess. Sorry, though, for all that repeating of myself. Over and over and over again. We're on a hospital vacation again! Only this time I told them, "How about we skip the Kohl's House step-down and just go for the gusto? How about all the way home?" Everyone seemed to be on board with that idea, and Annika was more than just on board with it. She asked me every hour, on the hour, (OK, not at night) for two straight days whether it was time to go home, yet. I was particularly happy to be heading home, since my little Frankie was clearly having a rough time. My mom told me that she wasn't sleeping very well and that she had had several mishaps through the week, including falling out of her booster chair and having a run-in with the cat (The cat won the battle but lost the war, since my mom made the cat stay in the basement for the rest of the day for bringing her claws way too close to Frankie's eye. Don't worry, cat lovers. Hepburn had food, water, litter pan, boxes to play in and balls to bat around, but it was quite an indignity nonetheless.) When I called home on Thursday, just two days after our difficult talk with Anni's doctors and the same day that we found out about the insurance crap (hitting the fan and all that), Frankie broke my heart by refusing to return the phone to my mom and wailing into the receiver, "I want you baaaaaaaaaack! I want you baaaaaaaaack!" She dragged out the vowel of "back," and pronounced it "ah," as if grief had turned her into an upper-crust Englander all of a sudden. So I knew it was high time for both girls to have everyone at home again. Unfortunately, just 15 minutes before Jörg was due to arrive to ferry us home, Annika's main doctor decided that perhaps she should stay in Chicago after all. They had started her on the new med to help control the bleeding, propanalol, which is a common blood-pressure medicine. But Annika's response to the drug had been mixed. It appeared that her blood pressure had lowered nicely in response, but her heart rate appeared to have actually increased, the opposite of what is expected (and wanted). Feeling like a lousy, rebellious parent, I said, "Really? Are you serious? I don't think we can do that. Not really." I mean, Annika has had way too many promises broken over the last few months. At some point she's going to stop believing us at all. One solution, I suppose, would be to stop making promises, but really that is the only way she gets through everything. Knowing that there is always an endpoint in sight, just one more day or maybe two, allows her to keep her spirits up. So we made a deal. We brought Annika home, but agreed to take her in to her pediatrician every day to have her blood pressure and heart rate checked and reported to Chicago. On Tuesday she'll go to the hospital here to have labs drawn from her PICC line. On Thursday we'll head back to Chicago, with the understanding that they may want her then to simply stay. This way, at least, I have a chance to pack for a more long-term stay, and I can arrange to bring Frankie along, so that I'm not missing out on things like, for example, Frankie learning to operate a door knob (heaven help us all) and she's not missing out on having a mommy to tuck her in at night.

Warning: not so interesting thinking out loud stuff to follow. Also a shameless feeler to see if anyone is interested in taking on two cats.

I'm going to need to figure out, too, how to give my mom a break. She's suddenly spending her retirement caring for a 2-year-old. A 2-year-old that can operate door knobs (heaven help us all). I think that, as long as Annika is not in the PICU, we should work out how to keep Frankie in Chicago with us. Other moms do it, so surely I can, too. And I need to figure out what to do with the cats. I think Hepburn's unprovoked attack on Frankie was probably linked to irritation at the upheaval of the household, but perhaps also due to illness. I've been suspecting for a while that she is maybe becoming diabetic, or maybe her thyroid is just going nuts. It's just such strange behavior for her, since she and Frankie have been really very good buddies. Either way, we need to give her more attention, and I'm worried that she's not getting what she needs. Hepburn is no youngster, 15 years old, and I've had her for 14 of those years. But I'm thinking that we should look into better homes for her and her young buddy, Redster, the furball cat who only likes women with soft voices. The only problem is that most really devoted cat lovers already have cats in the home, and Hepburn is such a competitive spitfire, even in her old age, that I'm sure she'd stir up some trouble. And probably come out much the worse for wear, given that she's a tiny little thing. Still, if anyone happens to know someone who's just been waiting to lavish some serious love on two cats, let me know. Don't worry: I'm not holding my breath on this one. And I also know that we'll be able to care for the cats. It's just that I'm worrying that perhaps they would be better off with someone not living life two seconds from crisis mode all the time.
Regarding the COTA account for Annika, I'm hoping that we will have it all set up by tomorrow. Jörg just called to tell me that Children's is faxing in the patient paperwork to them this morning. I do appreciate the calls to simply put up a paypal button, and I know that would be easy and quick to do, and I appreciate that so many of you trust that any money collected will go toward Annika's medical care. But my skin is way too thin right now to withstand even one comment suggesting illegitimacy. ("Right now?" I can hear you laughing, Jörg. And, really, now is not the time!) So for the protection of my own mental health, we'll give COTA a chance to set this up for us quickly. They seem to be very responsive, so I bet they can do it.


Anonymous Anonymous said...

Glad you are home, if only briefly.

We continue to pray.

Frank (Marisa's Dad)

2/13/2006 10:00 AM  
Anonymous Lisa said...

Yay for going home.. even if it is just for a tad. Also know we are thinking of you all every single day! You are such an amazing Mommy to both your girls.

As far as the fundraising goes, I completely understand how you feel with setting it up through a group like COTA. It is always something when you hear a comment like, "oh I saw you got a new minivan.. " and see their wheels a turning in their heads wondering if I just went and spent money from Aidens' fundraising on our van. It is a great feeling when I say, ALL money donated to Aiden goes into a fund that ONLY pays medical bills. Nothing else.

It is a crazy world and people are not nice sometimes. It is the last thing you need. To be judged. Although screw 'em if they try.

You guys are amazing and I am sorry for all the horrible awful things that just keep coming. We are praying that the new meds work. Many many hugs.

2/13/2006 10:09 AM  
Blogger Running2Ks said...

Oh congratulations on having a home visit! I am so happy for you getting a break! YAY!

As always, my prayers and thoughts are with you. And I'll keep plugging that COTA --I hope this is a big success for you.

Andrea is so sweet for keeping the information in a central location and organizing so well. Fingers crossed!

2/13/2006 10:28 AM  
Blogger timna said...

rambling is good.
glad to hear you're headed home even if for a short time.

2/13/2006 10:29 AM  
Blogger Phantom Scribbler said...

I'm glad that you'll have a few days home, at least. We're thinking of you all.

2/13/2006 10:29 AM  
Blogger halloweenlover said...

Hurray for a trip home. I hope Frankie does better this week, and that Annika's heart rate comes back down.

We'll wait for COTA, no problem!

2/13/2006 10:46 AM  
Anonymous Rowan said...

I, too, am glad that you get to go home, however briefly. Frankie would probably prefer Kohl's with mom to home without. And I think you'd mentioned before how easy it is for the kids to make friends there. You might be able to do more than you think. Who knows?

I understand your desire to not have legitimacy questioned. That is exactly what you do NOT need right now.

Whatever you need, Moreena. Whatever you need.

2/13/2006 10:46 AM  
Blogger Rev Dr Mom said...

Hope that your days at home are restful and restorative for all of you! You're still in my thoughts and prayers.

2/13/2006 10:49 AM  
Blogger Shannon, Little Marisa' s Mommy said...

I'm so glad Annika got to come home. Even a day or two makes her feel better. I pray for Frankie so much. She is a very brave little girl too.

In Michigan, we have Children's Special Health Care. It's basically Medicaid for children with qualifying illnesses. It can be used to supplement private insurance, or used by itself. Children are NOT refused because of family income. It is based solely on medical conditions. Biliary Atresia/Transplant qualified Marisa. We pay just $50/month and have UNLIMITED coverage. The monthly amount paid is calculated on income and number of family members. Some people pay nothing, and some have to pay. It's very reasonable though. They cover ALL of our "LIVER RELATED" prescription co-pays, doc office co-pays, and basically anything that our Blue Cross does not cover. I never have to pay anything out of my pocket.

I know you've checked out lots of options, but thought I'd throw that out to you in case you have something like that available to you. Our Social Worker at the hospital got it set up for us. It did take about a month to get processed, but once it went through, coverage was even retroactive to the application date. CSHC even covers Marisa's Pediasure. I don't have to pay a co-pay or anything. They provide 4 cans/day for her. I really really hope you can find something like this available to you. I'm sure you have done this already, but check with your hospital Social Worker.

Shannon, Little Marisa's Mommy

2/13/2006 11:43 AM  
Blogger ccw said...

So happy you are able to go home, even if it is a brief visit.

2/13/2006 11:44 AM  
Anonymous peripateticpolarbear said...

Yay for home. You made some reasonable deals, I think, and just imagine how good it will be for Anni to sleep in her own bed!

2/13/2006 11:53 AM  
Anonymous Becca said...

Yeah, yeah, yeah. Yeah for home. I understand what you mean about breaking promises.

When we were leaving the hospital last week Natalie said, "Nannie hoommme." She understood and I was going to do everything in my power to get her there - I too sounded like the crazy parent when they suggested keeping us one more night.

We'll see you Thursday. We have clinic, followed by a CAT scan. But we'll be there - with a hug if you need it.

2/13/2006 11:59 AM  
Anonymous Shelley (Caroline's Mom) said...

Moreena- I am just catching up on the last few days as I have been away. Insurance bureaucracy on top of everything else? Why don't they just send someone to rub salt into your wound! I am so glad to hear that you are home and we will continue to pray that you stay there. I'll keep my eye out for the COTA link!

Hugs to you all... oh, and endless chocolate cake to Annika AND Frankie!

2/13/2006 12:15 PM  
Blogger Moreena said...

I've heard of that Michigan program before. One of the PICU nurses mentioned it, too. We wouldn't mind living in Michigan, actually. We're both kind of cold weather people. Anyway, Illinois doesn't have a program like this, although if Annika hits her lifetime max and she's still under 18, she will qualify for cheaper insurance than what we can get now.

2/13/2006 1:00 PM  
Anonymous Beanie Baby said...

I wouldn't mind you living in Michigan either, since it's just over the border from me. ;) Not that I'm selfish or anything....

I'll get that COTA link up as soon as I get it!

2/13/2006 1:31 PM  
Blogger Sarah said...

If I could take them, I would Moreena. The cats I mean. Living in a two bedroom apartement, with three kids, a dog, a cat and a guinea pig....well, it is more than enough to deal with already. I will ask around. I know that a friend of mine, her parents just had two cats that passed away recently. They might be whiling to take a couple more in.

Anyway, I am glad to hear that you guys are home now. Anna wants to send Annika a letter, but where should I send it too? E-mail me if you can. Also, that COTA link is going right up on my blog also.

I can't even balance my own checkbook right, so I don't think I would be good for the trustee part. Let me know what all goes into being the campaign or media coordinators. Obviously, I am busy with my girls, but if I can do most of the work from home, I am whiling.

2/13/2006 1:55 PM  
Blogger Yankee T said...

Congrats on going home, if even for just what will seem like a split second. You're in my thoughts.

2/13/2006 3:24 PM  
Anonymous Anonymous said...

So happy to hear you all get to have some HOME time that you so very much deserve. I am praying that all goes well and little Frankie can have some "mommy"time.I know how much you miss each other.
Hugs to all,
colleen (spencers gramma)

2/13/2006 6:03 PM  
Blogger angela marie said...

I have a post and links about Anni on my blog...I hope everyone's efforts really make a difference!

So glad you all get to go home for awhile!!

2/13/2006 8:54 PM  
Anonymous Robin and Sabrina said...

We can't take the cats, Snuggles would never allow it. But in the meantime, we will be happy to feed them while you are in Chicago until you can find a home. Let us know what else we can do, and give us a call if you get a chance when you are home.
Robin and Sabrina

2/13/2006 8:57 PM  
Blogger Kathryn said... glad that you will be getting some home time, and still praying on the other fronts.
Take care all of you. Relax as far as you can, and enjoy being a family together.
Special hugs for Frankie,- whom I think of every time I get a hug from one of my kids.
Best love xxx

2/14/2006 4:01 AM  
Anonymous Mary M ( KaitlynsMom - CLASS) said...

We used the ALF for the same reasons. With all the stress who needs to worry about the legalities for fundraising.
Listen, I have about 300 green donate life bracelets left from our fundraising efforts. We sold over 2000 which for $2.00 each. Who would imagine. We have exhausted the bracelet avenue.They sell themselves. Can I send them to you use with your fundraising efforts? My donation to your effort. If interested please email me at

You and your family are always in my thoughts and prayers. Wishing you continued strength and faith.

2/14/2006 6:25 AM  
Anonymous Marisa said...

Did you get the SURPRISE!? Oh, I hope so! I can just picture her when she sees it....that big huge grin of hers!

2/14/2006 3:53 PM  
Anonymous kathy a said...

happy valentine's day!

2/14/2006 8:40 PM  

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