Thursday, September 04, 2008


Susan said... you think perhaps the increased blood flow after her successful surgery is helping brain function, as well as the rest of her?? She seems to be increasing in alertness and awareness of things around her since her surgery.
Since Emma was so interested in the card, I bet she'd love some colorful board books. She handles her bottle so well - she could probably learn to turn pages easily! Needless to say, Micah and Brianna would love them too, or I'm not a retired children's librarian ;-)


I have no idea if the blood flow has affected her in a literal sense, but in the sense of having more energy for other things, I'd say definitely!  yes  As for the books... oh, I wish I took a picture of our "book room" as the kids call it before cleaned it up yesterday.  Let's just say there's no lack of books at this house! LOL  The kids all love them :)  Emma will look at books on the floor but in her chair she throws them.  It's more fun :) Brianna has taken to bringing books in the car and will flip through them the entire drive.  LOVE IT!


McKenna said... I popped over here from my online course....your site is just so much more fun than "Theories of Personality..." :)


Ah... psych major?  Loved those classes LOL  I minored in psychology


narretto said... ...Also, William has a lump in the middle of his chest and the cardio says it is just the way the surgeons "put him together" (sounds funny ) after just how the rib cage is aligned, I will post a pic of it and let me know if it is like E's, I can't tell how much her's sticks out.

Here's some better pic... at least a little better...

014 016

I'm not even sure that those show it well, but you can see it's raised anyway.


michelle said... do you know if this is what the place emma was going to end up in is like?

The place my kids would have gone is a little better in some ways, but children are still restrained, tied down, and are left in their own filth, are not held, not calmed, and really, I can't think of anything that really makes it "better" than those places except there is a little but of relief efforts going on there.  It used to be BAD but seems to have improved.  Still not a life for Emma as I'm sure they wouldn't have continued her 5x/day medicine routine and her heart failure wouldn't have allowed her to last more than a few weeks maximum...


dr_bristow said... Wow, what a neat article...very touching!
Not sure if you've already seen this:
You don't have to be an American Express card holder to sign up and vote to nominate Reese's Rainbow for the grant...


You must be a new reader to my blog?  Either way, I'm very glad you're spreading the word,about the AmEx project.  The button on the top right corner of my blog goes right to that link as well :)  SPREAD THE WORD, WE MADE THE TOP 25!~  More about that coming soon... :)


Kathy said... Are your newest kids afraid of the grocery store? I wonder, if they are, if it's because the temperature is kept low, and there's no carpet, lot's of "hall ways", reminding them vaguely of a place not so nice from their past?

I think you're right, there's probably something that sparks it from the past.  It's just Emma, and it's just sometimes.  Usually if she's already having a rough day she's easily triggered.


Alyssa said... Oh, what I would give to only pay $38 a month for gas!! :)

Ah, yes, but you have to realize that this house is not actually using ANY gas.  It's empty!  Noone there!  $38 seems like a lot to just have the gas company read the meter that doesn't move! LOL


Annie said... Your babies are getting so big! Unrelated to this post, but my little brother (he's 8) was looking over my shoulder at some of the pics on your site and I was telling him how Emma had heart surgery. He saw the most recent pictures of how Emma's scar is healing and he said "oh, is that how she got that big scratch on her chest?" I thought it was great that after only a few weeks, when he saw it all he thought of it was that it is a scratch.



Lori & Family said... Okay,Will she not qualify for SS disability? That would help with the medicaid issue. I have a friedn who is a wiz at this stuff and she would love to walk you through some of it if you would like. We call her the IEP queen. Let me know and I will hook you up with her
Still waiting on SS#'s (applied a while ago) so no way to know if she does or not.  Looks like our medicaid application (#3!) was this time denied instead of timing out.  Ah... this is fun, isn't it??



Thank you to everyone who commented on the IEP post!  WOW, I'm surprised you all read it! LOL  I will explain Florida and the Pain we have here with qualifying for ST in a later post.  Today I got a referral from the ped for private ST and PT (we'll hold off on OT until we get going with these two right away).


Chris said... I did read all of this, do I get brownie points(I'll take the brownie instead), but am a bit confused. Are the kids going to Ap.. next year, or a school closer to your house, Or is Ap.... the school closer to your house?

:) Ap... is the closest school which has appropriate placements for my kids.  It will be where they ALL go next year.  OP is where at least Brianna will go in January.



Shari said... Wow! Thank you for mentioning those things because Curtis's IEP is next week. I wonder if they'll need those things? Again, you rock! :o)

If he's registering for school for the first time, then YES, they will :)

Karyn Reed said... Wow! My day is busy with four children who don't require any special care. I don't have your kind of energy. Do you drink a lot of coffee?


Coke throughout the day keeps a girl going.  Oh, and don't forget chocolate.  An additional essential part of the day. Sugar, caffeine, it's all good! LOL


Jaimie said... is it just me or does it look like someones getting a little (itty bitty) belly??? maybe??? she looks really good Meredith :)

Well... since you mentioned it... if you knew the kind of gas she was putting off for the next little while after that bath I think you'd be amazed at how much that little belly went down pretty quickly :)) LOL

Karyn Reed said... She has one of the sweetest smiles ever. How could anyone not fall in love?


I wonder this myself sometimes :)


For all of you that commented on my questions about Emma's hand, thank you for the input and advice.  One commenter asked whether she bears weight differently on each leg.  She doesn't bear any weight at all.  More on this issue later.  We have a current brain MRI from before her open heart. When I finally got a pic of her doing it yesterday I realized that we hadn't received the copy of the MRI report and put that on the To Do list for today.  I'll post again in a bit with what our ped and I discussed today.  Thank you all for your input and "Mommy expertise!"


  1. SS card should take 2-6 weeks, not longer. If you don't have them yet call, this may be why your medicare is getting rejected? you might have to hire someone to look into this for should also be on SSI for sure.

  2. Ha! Nope, a minor in Psyc...major in Communication Disorders (Speech pathology)

  3. LOL...well she still is looking really good!


  4. My niece had open heart surgery (twice), anyway she has that lump like that too. Doc said it's how they get wired up afterwards. At least that's what they say...

  5. Yes Meredith,
    That lump is the same one that William has. I can see it clear enough to see it is the same. Does Brianna not have one from her surgery. I have a friend, her son had a AV repair and he does not have one...he had his surgery at a different hosp than us though, don't know if that makes a difference. I put a picture of William's on my blog a few days ago if you want to see his.

  6. Mercede and Cheyenne both had the same heart surgeon as babies, Mercede had the HUGE knot, Cheyenne had none. I just had to look at Mercede again to see if it was the same after her second heart surgery and it is. I was just always told that after they cut eh rib cage open that is how Mercede's ended up healing.

  7. Hi Susan! Love your blog and really admire you and your husband. Your daughter Brianna is almost the same age as my son Joaquin, he was born 1-13-06; we are also Floridians so maybe someday we can get together with the kiddos :) About your question of the lump in the chest, Joaquin has it too. His surgery was when he was 10 days old and his chest healed that way too, his is more pronunciated and to tell you the truth, sometimes freaks me out a little, because if he stays still you can actually see the beat of of the heart in his skin above the bone. :) The surgeon and cardiologist both say is normal and not to worry. Here are some pictures:
    The blog is in spanish but you can visit us anytime, bye and lots of love to your beautiful babies!

  8. Ooops! I am sorry I mixed up your name! Meredith, Sorry ;)