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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.

Monday, December 29, 2008

Report

Oh my what a fun day we had... Christmas time rocks... Our family has some of the neatest and fun traditions.(I am a little bias) Christmas Eve is spent with my side. We have a super yummy dinner which we eat picnic style in the family room on the floor in front of a huge,warm fire. This year we did a Danish dinner, complete with Ableskaoivors (k- I have no idea how to spell that) a roasted pork, which my brother had to drive to Tooella to purchase since no other butcher could do it the authentic way, we had two kinds of potatoes and yummy gravy and cabbage, although the most different was the fish on Rye bread. My mom made slush and stuffed mushrooms, we of course brought the smokies. We ate and waited for the Elves to bring our jammies. Our Christmas jammies have been dropped off on the doorstep by the elves since; forever. I try every year to catch the elusive elves and have never been successful. Then we do a puppet show of the Nativity. This is important because it helps my children to remember the real meaning of "Christ"mas before we tear into gifts. As always we ask to keep it simple and every year we are totally spoiled. Ry received Fancy Nancy (If you haven't read her books you MUST) A dress to change her into and The Posh Puppy "Frenchy"(another part of the Fancy Nancy collection) Gator got a fantastic music set, this incredible little race car track, and a super cool dump truck, complete with some very nice boulders. Jeff got some sweet gift cards and I got games (woohoo) and gift cards... Very personal in our books as we can happily find something we love. Whew! that was only the EVE.
Christmas day the kids each found the gift Santa left them. Ry asked for the Baby Alive who learns to potty, and Gator a Jr. Quad.(battery powered kids four wheeler)
Then we headed over very slowly because of the lizard, blizzard to daddies family minus the "fried Homies" but missed them like crazy. We had Brunch... More yummy food, kiesh(again I don't know how to spell this and the spell check didn't help), tea ring and slush. Then we opened more presents.. Ry got a darling Cabbage patch doll with black and blue hair(blue part glows in the dark), tons of outfits that are soooo cute and hand made, and the tinkerbell movie, a very beautiful heart necklace with a real diamond (I got a twinner one, I love it) Clothes okay the list goes on... Gator got balls and brummm brumms (cars) clothes and the list goes on. Daddy got his binoculars(he might be spying on you soon), I got tons...see we did get spoiled like crazy. Then we went to a movie. Bedtime Stories. I loved it. My kids did great. Ry watched the whole thing and Papa got Gator to sleep. So I got to watch the whole thing. We crashed at the end of the day. And the next day and now we are battling a bug. So I haven't been so good about blogging. I only have pictures of Eve. I was caught up in it all and forgot. OOOOOPSIE! We wish you had a great day too! I love holidays. I might just mooch off of everyone's cool holidays. There is Hanuka, Ramadan, Kwanzaa and tons more. I think my kids would love it too.

Tuesday, December 23, 2008

Almost time

It is almost Christmas and I am very excited. The kids, especially Ry, are very aware of the excitement in the air. She keeps asking if it is almost Christmas and can she open presents? I am finding a few minutes here and there to finish things up. We did our very last shopping today. Enough, no more. I am going to enjoy the rest of the clean up and then the day. I hope that no one was offended that we didn't do neighborhood gifts. This year we decided to forgo the usual letter, photo, card, treats, and such. It makes me a little nervous when others stop by with there bounty for us. I just wanted you all to know that instead, we donated it to those who have struggled this year. We were able to give. We are extremely blessed.

Sunday, December 21, 2008

So fun to have live dolls!


I pretty much love having kids!!! One of the best things about it is finding cute things to dress them in. I know you are thinking you have to spend a bunch to do this, but I am here to tell you that it really isn't true. I love doing everything fancy-shamcy. Ry's hair went in rollers and she sat under the dryer in the salon. It was really fun to have Gator, I wanted the old man effect again, hence his vest. I am going to have to try and find him a sports jacket with elbow patches and some suspenders for Easter. I can't wait. I am also getting excited for the petty skirts. I want to find one of those for Ry for Easter... So much fun. (Hello, momma, focus on Christmas) We had a great time and although I was sad that my Christmas shirt did not fit over my blessings and there was a massive hole is my stockings, AND I had to resign myself to wearing things I already owned I was very happy to have made it to church.. It was a very nice sabbath day. We couldn't take pictures with the whole little fam, because the hubs had calling stuff to attend to and the kids and I had to get out of those fancy clothes so that we didn't end up with any messes. I even posted the grumpy faces, the kids do pretty good. Not everyone smiles all the time... I tried having Gator hold an ornament so he would hold still, yeah, he thought it was a ball and kept chucking it at me. I then tried handing him a present. He did okay, out of about fifty shots these were the best.
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Saturday, December 20, 2008

Fun things

Pearson's taught us this... Yummy...
If you thought your life was tough, the Hubs and I get kicked outta our bed most mornings for these two little bed warmers.
We thought it would be fun to go sleigh-ing as Ry calls it. She looked forward to it all day and didn't want to come in. But, Gator had had enough after about three minutes. He reminds me of the boy on the Christmas Story. Those little Rosy cheeks where the only thing showing. Daddy bought the kids boots and mittens this morning and they where so happy to have dry warm toesies and fingers. The little snow suit Gator has on Jen and Nate gave us. I was with Jen when she bought it for Jackson three years ago. Soooooo cute! Thanks guys.

I also wanted to share that Ry tries really hard to say chimney but it comes out jimney.... So good luck Santa.
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Found

We found original Didi and a new didi arrived in the mail. I want to thank Prestige Toy Corp. once again. I also want to thank the "weekend janitor" who locked up the old one for safe keeping. This little boy is in heaven.
He loves new Didi and he looks just like old didi, he just has a rattle inside.
Ry tried to share; that was not happening.
Together.... And no he is not keeping his O's on without taking them out. He just has on clear tape.
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Monday, December 15, 2008

Hurray!!!! You five ladies are now going to receive something I am making... I know where two of you live so the other three need to email me your address so that I can mail yours when it is done.... homerz218@yahoo.com

Here's a little hint of what you will be getting....

I love (am slightly addicted) to doing this....

Be looking for it... I will try my darnedest to get them done quick....

Don't forget to pass this game along....

Sunday, December 14, 2008

This and thats

So I am really excited because I could potentially win a hoodie from Seriously so Blessed and all I had to do was link back to my blog... So here it is http://seriouslysoblessed.blogspot.com of course I hope you win something too, just not before me.

Also; I was picked to play a pass along game from our little heart friend Ethan's mom ethanjamescurtis.blogspot.com .... Check out her cute ornament... She is bringing me something back from Africa!!!!! SQUEEEEEEELLLLL!!!!

Do YOu want to play too?????

Heres How!

THE RULES: The focus of this is to do an act of kindness without expecting anything in return other than the recipient will, in their turn, pass the kindness along and "pay it forward."I will send a small gift to the first 3 bloggers who post a comment on this entry. In turn, those three will post this information and the game will continue!! The little something you send can be something you made, bought, were given or found, anything you want!! Just a gift that will make the person's day!!
If you are interested in participating, simply be one of the first 3 bloggers to leave a comment!! You have to promise that you will then post about this on your blog, link back to me, and then send something to the first three people who sign up to play along through your blog. Doesn't this sound like fun!!??
Don't be shy. In fact, here is a special invitation to all of you lurkers who never comment. Now is your chance to make yourself known and say hello! :)
Anyway, let the games begin!
Come on!!!! it will be fun, think of what I might send you! If I get a bunch of comments then I will do more pass alongs... See you could still get to play.

Wednesday, December 10, 2008

Christmas Spirit!!

We thought we would get a little hat crazy. There are only two of Ry because she wouldn't really participate.. She wanted to be DONE!
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Tuesday, December 9, 2008

Goes a long way!

So one of our angels came through for us yesterday. I was in a serious panic trying to find Gator's didi. G-ma D had emailed Prestige Toy Corp. months ago when didi started to get frazzled looking, trying to purchase another one to replace him when he eventually fell apart. You see he is not supposed to be washed in the washing machine per manufactures instructions to extend his life... But, when there is bodily fluids involved, we must wash him very well... Amazingly he has held up very well. Anyway, she sent me the emails which she had exchanged with Randi (The Vp of sales) and I wrote one telling her the predicament we were in and a link to this blog so that she could see pictures.... This amazing women, from a company clear in NY, took the time to help us.. she said that unfortunately they don't even make that little plush doggy anymore and she had searched their inventory for one.... But, that she would send us something similar to his didi and a couple of other doggy's to see if he likes one of those... WOW!!! can you believe that she would be so generous. I am absolutely floored by her kindness. So, I am plugging the HECK out of this company for doing this for us.... If you need a neat, snugly, cute, darling, fun, lovable, soft toy... You should check them out... (sadly they don't sell to the public, but if you know someone who knows someone.... Then there you go)

Monday, December 8, 2008

Calling all Angels!!!!

I guess I knew this would happen at some point, we LOST DIDI- Repeat- WE LOST DIDI.... I have made phone calls, we are going to show up with pictures... We are going to try the retailer.... Man this is sad...

Sunday, December 7, 2008

Week in review

You would think the energizer bunny lived at our house the way we have been going and going...... Gator had his first Synigis shot this week... Truly not fun, but really important.

We had our primary Christmas party, This is Mary, Joseph and Baby Jesus.. Jeff was a Shepherd and I did the music. It went amazing and I am so proud of all the children.

Friday we went to the Festival of trees and saw all the beautiful trees that people had decorated for purchase, all proceeds are donated to Primary Children's hospital. It was amazing. We saw many trees done by friends to honor their loved ones. This tree was done by Melissa and Becky "heart" moms who added all the heart kids this year... Gator is actually in this picture from the fun run. If you can see the bottom... IT SOLD!!!!! I am so thankful to these ladies for all their hard work and sweet thoughts for all of us. You would be amazed at the talent of these amazing donors. One group of artist.. all family.. did a blown glass tree, truly the hit of the show, it sold for 26,000.00 dollars...Whew!

Saturday was Ry's dance recital... Way to go little girlie... She was really nervous at first. The old "deer in the head lights" because this was her first performance ever; on a big stage, with all those people watching... But after a few minutes she was into it and dancing like crazy.... She was really looking forward to dressing up, putting on make up and wearing rollers in her hair. (of all things)
Today has been the same with Jeff doing a fantastic job at the pulpit conducting and then doing sharing time with the bishopric... And tithing settlement and such that keeps him busy...

we won't be slowing for a while...
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Wednesday, December 3, 2008

Ry-isms

Driving in the car last night- checking out lights on houses.. Ry says to me in a frantic voice...

"Mom, where the heck is our chimney"

I guess she is a little worried the big guy won't make it down ours...

At dinner we are finishing up and I can tell Gator is finished.. He must not have liked Shepherds Pie, cause there was still a bunch on his plate that he was happily smooshing around with his hands... Then he placed his hands one over the top of the other, in an X pattern and placed his hands on top of the mess. I said to him "ahhhh what are you doing you little mess maker?" Ry didn't miss a beat and said...

"Mom he is just giving his food a blessing, cause he wanted it to be better!"

Haaaaa, baaaaaaah.....

She makes me laugh so hard...

Tuesday, December 2, 2008

Gator sounds

We have been working with different sounds.. He is so funny... most everything is Roar... but he says hohoho for all the lights we drive by, all the Christmas decor and everything even slightly related to Christmas/Santa.

Check out this amazing puzzle....

Puzzlekins... are super cute... I really want to win one so, go to this site and check them out....http://jakeandvickilewis.blogspot.com you can win one too...

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

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!!!

Friday, October 31, 2008

It was a HIT

Four Gallon size Ziploc's FULL!!! Tooth and Tummy aches...

Dad - Super H
Ry-girlie face
Gator-Franky
Mom - Ummm-spooky

Gator the gator- Signing "candy" this is his kind of holiday!

Ry as Hannah Montana...With straight hair and make-up..She waits forever for opportunities to wear make-up in public.
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Thursday, October 30, 2008

To be little

I really like Halloween, when I was little my folks really had fun with holidays and Halloween was no different. I almost always had one of the coolest costumes and I can remember what I was for a bunch of them... One year I was a roller skating cat. That year I was also in "My Fair Lady" at the old Promise Valley Playhouse.. I remember going trick-or-treating really late, after the play was over, but my momma was a trooper and took me until I was tired. I got to be one of the best witches ever.. I have looked for pictures of myself in that costume, but I must have been too excited to hold still. It was a huge head made out of foam. I think my dad stayed up most of the night trying to finish it for me... It was pretty amazing..In Washington, we went trick-or-treating with a neighbor (brother Fischer I think) and he made it super fun.. The last time I went trick-or-treating for myself was when we had Japanese exchange students. They had never gone before, everyone kept saying "aren't you a little old for this" Good thing we had a good excuse.. I was way too old but it was so much fun. So anyway, tomorrow we do all our carving, treating, and costuming.... I hope my kids love it as much as me... I still haven't taken their pictures in their costumes... Tomorrow....

Tuesday, October 28, 2008

My Avon Halloween calander

 

I thought this was so cute, you move the pumpkin closer to the 31st.. It lights up and everything..... It was a must have for me...
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Pumpkin Patch 08

 

 

 

 

Every year we head over to good old Smitt's, to find a pumpkin..Ry loves picking out hers and helping the rest of us to find just the right one... I will post the pictures of the carved finished product.
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