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10/14/2009

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Wow. It sounds like much is going on there! Fingers crossed that CF is NOT something you'll need to add to your list. From a completely non-medical perspective, I'd say the odds are pretty good that his prematurity are just as likely a cause of the symptoms you describe, but sheesh. Having to wait for another test result is never fun. HUGS!

On the OTHER NEWS front, excited! Looking forward to hearing soon xo

I can't sleep either, but mine is more mundane, day to day, finding balance while working full time stuff. I sure hope that it all feels rosier for you in the morning and the CF is just a passing question. My interest has certainly been caught with your mystery phone call. Do tell soon,
Liz

Has Elias been tested for allergies? Some of those symptoms are also associated with celiac disease or just plain dairy/wheat/soy sensitivities or allergies. I know it's pretty challenging but you could also see if he improved if you took wheat and dairy out of his diet for at least a month.

Having kids is not for the weak hearted.....my doc said the same about my son. To the doc it was just like throwing another idea out there and we'll see if it sticks to the wall. For me it was crushing, even though I know our odds were slim for CF, what if my kid was the 1:3500, someone has to be the "1" in the stats. It drove me crazy until the test was done 2 wks ago, ours luckily was normal, but the wait was hell.
As for the surprise, I'm guessing some kind of photo session for your landscaping next spring?
31 wks is awesome! Go Olive Go!!!!!

I've always found the waiting to be worse. Once I know what I'm dealing with (or not) I can take action, research, move forward. Keeping my fingers crossed that the test is negative...

Let the insurance companies have their labels, you guys have Elias :)

When we had DD the first test they did came back positive for CF and the Sickle Cell so they had to more test since to make sure there were not false positives. The wait was terrible and I remember just crying in DH's lap. The CF came back negative the second time, the sickle cell she carries the trait for it, so while we won't have to worry about it developing with her, she may in her children.

Oh, my gosh. No one needs this. I had my firstborn tested, too, and remember just such sleepless nights. (Test came back negative and then I cried and cried.) Some famous 16th or 17th century essayist wrote that once we have children we are all hostages to fortune--and I agree! I've been following for years form Switzerland and am now ardently crossing my fingers for no more labels for Elias.

Oh, god, Christy...just one more twist of the knife for you. I wish the doctors and medicine would make the nights easier for you, not harder and more sleepless. After seeing my nephew with FAS, sometimes I wonder if all the labels and diagnoses matter all that much (except to the insurance companies); technically he's never been tested or officially diagnosed with FAS, but everyone knows he has it or enough symptoms of it that it doesn't really matter much. I hope and pray to God that Elias really doesn't have one more thing, especially since it will bring added worries with Olive.

"I read somewhere that waiting is more painful than loss, that not knowing is harder than the dreaded knock on the door, I can't say if this is true or not but tonight it feels probable." I can say whoever wrote this originally (not you!!) doesn't know shit from shinola. The loss is worse than the waiting, and the words that come after the proverbial knock on the door are far worse than the not-knowing. But it all depends on what it is. Some things these days--like the dread, anticipation, and not knowing of upcoming events--are harder than the actual event, so the original person's musings would hold true then...but when you're talking about true loss and when there's nothing that can be done to make something better, easier, or more manageable, then (for me) what comes after is far harder.

Hang in there! I hope the next few days are easier for the 3 of you!

I had all smiles thinking about you today. I just visited a former babysitter of mine and her adorable 3 week old baby girl. I kept imagining you in 8 weeks with little Olive. Then my friend and I were talking on the car ride home and her story was about a friend who lost her 2 week old son and all that it meant. We were both crying. Then I filled her in on your story and we were both smiling again. The Joy and the Loss that is part of every human story. We are in this together and that brings such peace. At least for me it does. Remember how you once wrote about how Elias's diagnoses do nothing to describe him. You are right. Hold onto THAT.

from the waiting to the loss, I will say that the loss is certainly worse, at that point there is no way to get back what was lost when at least during the waiting you still have what your going to lose.

much love Christy an thoughts that Elias does not get one more hurdle.

A question for you that we just had a discussion about, do you and Nick ever worry that you'll love one child more than the other?? I am starting to worry about the day that happens here.

Nurse Tara

Evan was tested for CF when he was less than a week old. There was honestly so much at that point that it really didn't matter, to add one more thing.

What are Elias' stools like? Are they oily, tarry, foul-smelling? Or "normal"? And when you kiss him, does he taste salty? Or haven't you noticed? I'd think that if he does end up with a dx of CF (which I really REALLY doubt at this late stage of the ballgame) it's going to be very VERY mild. {{{hugs}}}

Labels, hmmmmmm--I can't imagine that he does have CF or they would have noticed by now--don't you think? He is so much fun and wonderful to be with--love and hugs to all 3 3/4 of you

Elias is such a wonderful kid, and the world is lucky to have him... diagnoses and all! He's lucky to have your love, Christy, and Nick's -- and somehow there'll be more than enough love to go around when Olive joins you.

Medical and insurance issues are some of life's more distressing aspects... They're a parent's nightmare. I'm hoping and praying for the very best of outcomes for you!

My ds Randy had all the symptoms also at age 4yo, including repeated hospitalizations every time he caught a cold. The testing and waiting were so hard. Luckily, it came back negative after 4 days (normally the wait is 3 days). I hope for the same outcome for Elias!

In Randy's case, his repeated illnesses were found to be caused by a faulty immune system that later fixed itself.

--Sange

Christy, let us help you through this tough time...we are here to listen. I think by telling us your secret yu will feel so much better ( I can try, right?)
In all seriousness, you will face WHATEVER comes your way with the same fight, determination and joy with which you face everything!

Jill's approach to getting the secret to the Autumn Torture is hilarious! Good try!

Here's my guess as to what your surprise is: you're moving to a new house!

OK, it's Thursday, what's the big news?? :D

So much wisdom in these comments--thank you all for sharing.

Susanna Eve, Elias hasn't been tested for allergies but it was one of the questions we brought up as part of this comprehensive look at Elias. So I foresee an appointment with an allergist in our near future. I'm not sure how our bread and butter/cheese and cracker boy would handle giving up dairy/wheat/soy it would mean a lot more creative kitchen time for all of us but doable and an easier DX to swallow.

Danielle, love the expression"hostages of fortune" as a way to describe parenthood. So true!

Candi, your words come from experience and I trust you that waiting is a lighter route, edged with hope, compared to the travels after news of permanent loss, something that cant be fixed.

Flem, I can see you sitting in the car with your friend bouncing between tears and hope..Joy and Loss.

Tara, I do have this worry at times ad have talked to other parents who have admitted these fears while pregnant with a second or third but found they have enough love in their hearts for all their children and that they love them equally but differently. I worry about Elias no longer being the focus but in a way always being the focus based on his needs. Oh I could go on about my worries and will write more about them in a post.

Di, I'd say his stools are in the normal range but often soft and that he doesnt seem overly salty. We just received the referral for our test so it will hopefully be next Tues or wed and then the wait for results...hopefully negative or mild if positive.

Oh Jill you crack me up--of course I want to tell all of you and would have last wednesday if there wasn't other people involved and a need to be discreet for a bit

Thanks again to all of you for sharing your wisdom, stories, questions, and for reminding me that the insurance companies can have the labels, we have Elias:)

Oh, prayers and hugs are coming your way! For Elias, you, Nick, Olive!

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