Again, we ask for prayer for Tricia!

I'm beat tonight & was planning to hit the sack early & catch up with you all tomorrow but at the last minute I remembered that Nate had posted earlier today about another possible lung match for Tricia. With all the running around I'd done today I nearly forgot to check back! I had to come back out & hop on my husband's computer to check & see if there was a new update. Praise God! She is in surgery now, amazingly on Nate's birthday, and my thoughts & prayers are with them. I hope you will join me in praying for Tricia as she is in surgery, Nate & family as they wait, the surgeons & attendants caring for Tricia that God would guide them & of course for baby Gwyneth that her Momma would be returned to her healthy & whole to guide her & watch her grow.

Ephesians 3:19-21
19and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

D.

We Live in a Dirty, Germy World...

You're probably thinking this fact has only become critical to our family because of Lil Chris' CF but I'm blogging tonight to tell you this has been drilled into our heads from birth... The pressures of having children are magnified 10 fold by the lessons of our Italian family. We have been taught that the Italian word schifosa (pronounced skivosa) can be applied to everything around us. I say that with a smile on my face because it calls to mind many moments in my life where my Mother or Grandmother either said it out loud to my sisters & I in reference to something or shook their head & gave us "The Look" which was just as good as saying the word. I also smile because I know I've said it myself many times to my friends, my husband & my children. It's become something of a joke among them now & they love to tease me about it.

The fundamental thought process is that dirt & germs are our enemies & if you haven't cleaned it yourself then it's not clean enough. Public places are made to be walked through, not touched in any way if it can be avoided, & public restrooms...well, we won't even go there. If we or our children do have to touch something in a public place then hands must be immediately washed & clothes changed the moment you enter your clean house lest you contaminate it. Yes, I say this to be funny but in truth...this is how I live. And believe me, my Mom still checks to make sure I follow through. =) "D, did the kids change their clothes when they got home from school today?" "Yes, Ma. I made them leave their clothes in the laundry room & get directly in the shower." LOL! If I had a dollar for every time we've had that conversation...

There are days when I wish I could walk through life like other people - not caring about continuing to wear my clothes from work for a while after I get home (did you know your office workstation is probably dirtier than the restroom??? ewww!) or like letting my kids play on the toys at McDonald's without having to hose them down afterwards while thinking about how sick they'll probably be in three days. (my sisters are probably cracking up right now) Or arguing with my husband about how dirty his clothes are when he comes home from work & why he should change. (We've got a kind of Lucy & Ricky thing going - it's a crack up) Being this neurotic takes a lot of work & is very stressful! But it's a requirement in this family.

So now, take that ingrained war on germs & think about it from M's perspective with a CF child. I cannot imagine the pressure she feels. I can only compare it to the pressure I know I feel & then magnify it exponentially. To always be on top of "the germ factor" lest you be caught overlooking something or the guilt we were taught to heap on ourselves when our kids get sick because it must be our fault. I admire her so much for taking all this on without batting an eye & inducting Big Chris into the craziness of the germ war. They break out their anti-bacterial bottle for anyone who comes near Lil Chris. They explain why it's important that people not come near him if they are sick. They are cautious about the places they take him so that he is not unduly exposed. And all while shouldering the pressures of our family's old obsession with germs.

Now, I am not in any way saying that other families of children with CF don't do the same things. I'm sure they do!! My purpose in tonights blog is to 1) get a laugh out of my sisters & maybe some other people who know us well & more importantly 2) to let M & Big Chris know that I admire them for for how they've adjusted & stepped up to the challenge of raising a CF child! Lil' Chris is thriving because of their excellent care & I'm proud of them for what they've acomplished! They love him more than anything & it's apparent in everything they do & every decision they make.

Thanks for listening tonight. Sorry if I got wordy & hope you had a laugh or two! =) D.

CF Update

On 3/5/08, Lil' Chris went to the CF clinic for his regular check up. They said he was doing great. Weight and height all good. Yea!! They did however change his reflux medicine b/c our insurance would hardly cover the Prevacid capsules anymore. They said the next best thing was Prevacid Solu Tabs. Well, we just now got them after about a month. Luckily we still had some capsules left, so he only went 2 weeks without anything. Yes, we did have a few episodes of spit up/throw up. Sorry, I know that's gross. At least you don't have to be the one to clean it up ; )

They told us to put the tablet into this special syringe they gave us and add water while holding the bottom with your finger so the water doesn't come out. Let it dissolve, then let go with your finger and squirt it in his mouth. Sounds real easy doesn't it? My first thought was, "Sounds like a pain in the butt!" If that's what we had to do, then we were going to do it though.

Anyway, today was the first day we got to try the Prevacid Solu Tabs out. It went pretty much as I expected. Horrible!!
First of all, I had no clue what I was doing, even though they explained it to us.
Second, the stuff doesn't dissolve as fast as you think it would.
Third, I'm not very patient.
Fourth, I don't think it ever would've dissolved, it just turned into little beads in the water.
Fifth, how are you supposed to let go with your finger without it getting all over and put it into his mouth all at the same time? As soon as I took my finger off the top, it started to spray all over! Maybe b/c I shook it a little to get it to dissolve faster ; ) Oh well, better luck next time. We'll figure something out. Maybe tomorrow he'll actually get some in his mouth : )

If anybody has any advice, I'd love to hear it. Especially any tips or tricks ; )
Thanks,
M

Tricia Update

Tricia's procedure went good. Thanks for all the prayers. Please continue to pray for her recovery and for her to get her new lungs soon.
Thanks,
M

Pray for Tricia

Please stop and pray for Tricia right now. She just found out that she has a collapsed lung and is having a procedure done that inserts a chest tube to clear out the fluid/air and relieves the pressure. I pray that all goes well and she recovers soon and has no more chest pain. She is such a strong person. I admire her for that. I pray Lil' Chris will be as strong and brave as she is. Please also pray that she gets her new healthy lungs soon. Then she won't have to go through things like this anymore.

If you ever want to hear more about how Tricia is doing, click on Confessions of a CF Husband on the right side of the page. You may have to scroll down to find it under Our Fav CF Blogs.

Thanks for praying,
M

Susanna's Story

Susanna,

I just re-read your story and was thinking that my sister is right! We do have a lot in common! We are the same age and both have a 9 month old CF child. I'm really glad you told your story. It's good to hear someones elses point of view on things. I never really thought of things the way you pointed them out. I hope I never make Lil' Chris think that what he has is soooooo horrible that we would never want to go through that again with another kid. He is such a joy to have around. I wish I could have 2 or 3 more just like him. But I can't help but think what's down the road for them. What's inevitable. I don't know. I like the way you think. You seem to always think of the positive side. I like that. I should start doing that more. Thanks for helping me see a different side. Something I probably never would have thought of. I'm going to think on it. It is something that has definitely been on my mind. I'm glad you brought it up. I'm sure I will write more about it later on.

Thanks again, hope to hear from you soon!
M

Thanks

Hey,
I just wanted to say a BIG THANKS to all who comment. All your words are very encouraging and I love hearing your stories and experiences. Thanks Susanna for sharing your story with all of us. I hope you continue to do so and keep us updated. Anyone else who would like to share their story too, please let us know. We would be more than happy to share them with everyone. Trust me, you feel much better once you get it all out :)

And thanks for all the comments to come =)
I love reading them!

M

The News

For the first part of this story, click these...
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call
5. Our Options
I remember waiting a little to tell my husband about the call that he was a carrier of CF too, until we were alone out in the hallway in the hospital (plus, I think I was in shock at first). I wanted it to be private so I could give him a big hug and because I knew it was going to make both of us teary eyed. Which it did because we knew what that meant. We had to stop trying to get pregnant and we could never have our own child, our Lil' Chris.
Of course, he was devastated, but we both had to be strong. We don't normally show our emotions in public. He and I are very much alike in that respect. We may have shed a tear or two in the hallway, but then sucked it up and went back in the room and acted like nothing happened. I remember telling my sister-in-law about the call, and later D on the phone, but no one else. It was very hard to speak about it at that time. I acted like it was no big deal, but deep down it was killing me.
It wasn't until we got back to our room where we could finally let it all out. I remember just holding each other crying. We wanted to play the blame game on God, but we are not that type of Christians. We would never do that. We know that all things happen for a reason and that something good always comes out of something bad. You just may not realize it until later.
After about a week, after a lot of crying, we had to come to grips with it. We had to accept the fact that we wouldn't have our own child. I still don't think we ever really did, it just didn't seem right. We were ready for a child, our own child!

M