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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, November 29, 2008

Above The Hate!

I am pleased and proud to have signed this. It is important for all people, regardless of beliefs and preference to open their "HEARTS"..... If you are interested in hearing or reading more about this visit http://abovethehate.com ....

Monday, November 24, 2008

The photo's to go with the last post


Good thing I don't freak out like this any more about Gator's "broken" heart!


These are two of my Super Saturday treasures. Earring holders... So to do this. You find paper that you like. A good flat frame. Then you mod-podge (Sp?) the paper on and then hot glue in the metal screen from the hardware store.. add ribbon and you are set. I realize I should have put some earrings on it to show how it works... but they are pretty cute anyway.


Here is Gator back on O's and with Di di in the tubby.... My my! you have to look really hard to see his scar now... Yeah for vitamin E!
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Sunday, November 23, 2008

The past couple of days...

This week has been busy. (What week isn't?) just for our record these are a few of the things that we have done... On Thurs. Reynolds asked if Ry could come and play... I walked over with her and Missy and I chatted on the front porch for a few minutes... Then Missy asked if Gator had had a blue sucker today.. I looked at his lips and thought..HOLY COW!!! We came home to check is sats on the pulse ox to find that he was 59. So I called card..I wasn't totally freaked. He's been lower. So while I was waiting for them to call back I put on his oxygen. Had him to three liters and he jumped right back up to his normal range-75-85. So he stayed on that the rest of the day.. It was a huge struggle to have him put his cannula's back in... He hated it. The home health supply lady (Casey) had this brilliant idea to put a cannula on his DI DI... once di di had it on, it was cool for Gator too. I forget how many looks we get when we are on O's. Especially since I let Ry carry the little B tank and follow Gator around... He also had a blow out that day and would not get into the bath to get cleaned off, he kept trying to crawl out and get that silly dog. I finally got smart and got a zip lock bag and put it in the tubby with him... He slept with the O's on and by morning and a good sucking out with the blue-bugger sucker thing, which I think is called a bulb syringe. He was back to himself. We were warned that little colds like this just might cause his sats to drop. I guess I am always surprised when it happens. Saturday was busy... We had super Saturday. I did the cutest things... I'll take a few pictures so you can do it too... I had a blast... It has been a great Sabbath day. We are taking it easy and I feel like I need to rest from last week and rejuvenate for what will be happening this week... BLACK FRIDAY!!!!

Wednesday, November 19, 2008

Too wiggly for pictures!

Loves to look out the windows!!
Check out the dimple in his chin...
Got him laughing, but the picture is blurry because he was so wiggly.
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A ball?

Yesterday Gator discovered *himself*.. I am not telling you this to gross you out, or to sound disgusting... But because what ensued had me laughing hysterically....

Gator looks down, says BALL, (he is totally obsessed with bouncing balls in general) and tries to pick up the for mentioned ball... Finds that it is attached to his person, and tries even harder to "pick" it up.... He injures himself (injured good)... and starts crying... Poor guy, can't have his ball and hurt himself in the process....

Don't try this at home.

Tuesday, November 18, 2008

Proof of the Didi

video

So this is Di di.. That by the way stands for doggy in Gator-ies. I need to find another one to replace this...

Friday, November 14, 2008

The Di Di

So Gator has had this little doggy "lovie" since he was really little... we used to use it to prop: him up, to prop the vent in the hospital, his bottle (i already know that was bad), and he has basically had it for every stay at the hospital... I thought he would be a blankie boy; but no, he loves his Di Di... While he was learning to crawl he would hold it and push/drag it while he crawled.... Now that he can walk, he usually has two things in his hands... One is always this and the other changes.... Today I thought it was so grubby... I let him have cheeto's yesterday and it was orange.. two days ago he split his lip again and he bled on it... plus, I think he got milk and other food on it.... So needless to say Di di needed a tubby.... While it has never been an issue before today, today was like cutting off his arm... he kept crying di di, di di..... putting his open hand up by his ear and signing "where"... then "want".... di di.. It was so horrible.... So I had this brilliant idea to take him to the washer and show him where di di was.... Ummmmm.... what the heck was I thinking.... he got so excited seeing him in there sloshing around.... but wanted him.... I took it out to show him it was all wet... I am sure he was thinking, WHO CARES!!!!! I took him away kicking and screaming.... I dried him for the shortest amount of time... he was a little damp, but clean and smelled a whole bunch better, when I gave him to Gator.... So happy to have him back after two hours of torture. He decided he would go right to sleep.... Poor baby.... Am I so mean? Next time, tigs will just have to do until DI DI has a bath....

Tuesday, November 11, 2008

Randoms

Thanks Melissa for this fun post about random things about me... I had to really think about them.... If things like this make you bored you can stop reading now.

1. I am the most low-maintenance-high-mantenance girl ever. I love make-up, hair, and clothes. I just like it on others.
2. I love Tupperware, and totes... BECAUSE---
3. I love to organize things.. I like rows, stacks, bundles, and clean lines.
4. I have to have a tidy house.. I don't expect it of anyone else, just me..
5. I am really bad at laundry, I can do it, I just don't like to. I am infamous for leaving wet laundry in the washer until it smells all mildew-y.. But, I have learned that a 1/2 cup of white vinegar takes care of that.
6. I love salty foods... saltine crackers(I have loved these since HS I can eat the whole package), cucumbers in vinegar, edamame(sp?), salt on my grapefruit, green apples, rhubarb, My family makes a drink called "Lemon on the Rocks" which is basically lemon, salt, water and ice.... MMMMMMMM
7. I love the romantic style of decor, antiques and roses... but because there is so much pink and flowers I have to limit it to Ry's room...
8. I don't care for debate.. I just have an opinion that I don't care if no one agrees with; it's mine. I usually educate myself to make an informed decision on how I believe and that is that....(no I am not stubborn)
9. I really love to have my veggie garden, although it is really hard to have with kids... No time for weeding.
10. I am a shower diva, I like to sing. Just not in public....

I could only think of a few... but I am full of quirks... so...... Lets hear this from, Angie N., Likes Chocolate, Little Collection, Mindy F., Andrea(s) (all of you!!!!!)

Monday, November 10, 2008

Wow and wow

Whew, we did it, we had our primary program, I feel like maybe I can function now.. I have been the chorister for about five weeks and we had our primary program all planned and all the songs learned (thanks to the previous leader) all I had to do, was learn all the songs and how to lead them since I have never lead before and then I needed to be an actress enough to get those kids to sing and smile and Whew!!!! I am really glad it's not for another year. Jeff and I had a real date to see the Body Worlds 3 exhibit on Friday. Thanks to Scott and Carolyn who graciously gave Jeff and me their tickets after mine totally disappeared. I looked high and low for those darn things... They are still gone... The body is an amazing thing, it almost wasn't real seeing things the way they have it available. This was also an amazing exhibit because it focuses so much on the heart. I am obsessed I know. But, I have learned so much in such a short amount of time... It is amazing to actually see your own brand-new baby's heart beating away in his chest. With every little beat, I knew he was getting better and better, with every beat I knew he was still here with me and that I got another minute with him. I must need something this big to be so interested because it is so amazing..
HE also started nursery... WHOOOOOOOHOOOOOOO!!!! it is nice, I worry about germs and getting sick, we will just be keeping an extra eye on him, but I love his leaders and all that they do to try and make it a germ free, safe place. It does help that there is more than one immuno-compromised child.. They take greater care with clean hands and really enforce the rules about sickies... LOVE YOU!!!!
Today I had a fun tutu party, for those of you who want to learn we are going to do it again, this time I will host it so it gives each home a turn for the Chaos... Thanks guys... I love Ry's and we are so doing the leg warmers in full force next time...
Jeff got the Christmas lights on the house on Sat... For those of you with LIGHTS envy/pressure have no fear, we just didn't have any other time to do it... so it would have been then or never.... Thanks baby, for doing that. Sorry, I kept pestering you... I love them.... I don't think I have any other news... so TTFN

Friday, November 7, 2008

Making the Move!!!!

Well with a little help from my friend who knows this stuff... I am moving our family over to a new URL... That way we can be safe and still have our blog open... So move with us.... to http://joinedbyourhearts.blogspot.com . All you have to do is copy this to your reader or your link list.... I will be deleting this old one in a week or so. With much love. The mommy.

New fresh feelings

Okay, I have us all set up on our new blog.... I hope you don't feel sad about having our other one gone... But this will be a little better and I think more safe. So please change our address to the new one... A million thanks..

The Mommy

Thursday, November 6, 2008

extended family Pictures

My Folks
Daddy and Gator
Our little family
My Bro and his brood
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Posted by Picasa1. Auntie
2. Gator through a toy- put the toy right up to my lens and took the shot...
3. Ry ry
4.Our little Arli


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Wednesday, November 5, 2008

So as you can see!!!

Thanks for the helpful hints and ideas to make me feel safe again. I want people who are interested in heart babies to have access so I didn't want to go private. But, I did take out our names and birthdays and such, just wanted to be a little more careful... I am still going to post pictures. I just wanted personal info to be on the down-low. In other news... I think this will be an interesting thing to watch our new government. I am excited for the new ideas and fresh approach, however the task is daunting and I am sure either man would have felt it overwhelming. It is a little hard for me to see something I am comfortable with change... Change is always hard... Ideas and values... But I will continue to do as our church leaders have asked, and that is to pray for the leaders of our government (local and national) in making decisions.

Tuesday, November 4, 2008

Did you watch the news???

So I am a little freaked out by the story that KSL did on blogs... So we are changing things a bit... Pardon our dust!!!!! In the mean time... if you are interested in reading what I am talking about, you can check it out on KSL.com....Don't get me wrong, I am still gonna blog, I just want it to be a little more less-weirdo friendly... I Voted TODAY!!!