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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.

Tuesday, May 27, 2008

It's official

Every year I can tell when it is REALLY summer when I get to sit on the grass and watch my kids play with the England kids... It means it real, it means that we finally don't have to be stuck inside anymore... It means I can gab with my friends while my kids sit in dirt, ride their bikes, skin their knees (poor Jackson) and play with friends... I love it...So if you are out on a walk and you see me outside... Feel free to pull up some turf and chat a while... I might even break out the popcicles...Everyone is welcome and it's free... If you like to spend your evening outside in the air, I might come visit you!

Monday, May 26, 2008

Lets get married

In the car on the way home Ryleigh and Daddy have this conversation after Ry has left the Grandparents house with a daisy. (you know the bouquet

R- I am married
D-You're married?
R-Are you married?
D- Yeah me and mommy are married
R-i wanna get married
D- you do? who are you gonna marry?
R-um, Alex
D-No, you can't marry anyone in your family
R-Oh, I'll marry you!
D-No you can't marry me I am in your family, and I am married to mommy
R-You're in my family?
D- yeah, but you could marry Hunter...
R-Yeah (with much squealing and giggling)
D-or you could marry --------
R-noooooooooo
D-or you could marry ---------
R-nooooooo
D-Okay Hunter, but you can't get married for a really long time...okay
R-Tomorrow?
D-no a really really long time...
R-okay, this many,(holds up three fingers)
D- no this many (holds up all ten and then does the AGAIN, and again and again sign)

Ry looses interest and starts talking about staying up late because she doesn't want to go to B...E...T.... When dad says "when we get home it's time for B....E...D..."

Photograghy of a three year old...

 
 
 

To help Ryleigh be good and help with her chores without complaint we heard of a jar system that seems to work really well.... For everything good that she does she gets to put a marble into an old formula can that she decorated with stickers.... When she has reached the total amount of marbles for the pre-set amount, she gets to earn her reward... This particular time she really wanted a camera, I thought that was probably worth fifty marbles... it has taken her nearly three months to earn them all... Well on Friday she had fifty three when we counted them up so we headed off to buy her camera... The camera took horrible pictures, so we took it back and got another one... We hope the new one is a little better. I haven't downloaded them to picasa yet. just to show you how awesome the camera is we saved her first shots, I tried to make them a little more visible, we will be having a gallery show every once and a while to show you how she is coming with taking pictures.... Also the little TURKEY has figured out how to escape again... It is not like I never pay attention to my child, she just gets away from me... It can be as simple as me changing Gator and she is gone... she can now get out of the backyard that is totally fenced in and has these hard to open gates that I even struggle with... But to a three year old master mind, it is a breeze. like I said before; great problem solving skills, but a flight risk none the less.. Her bike had a time out because she left without telling mom... I think that she got the idea...AND she lost a marble.... Tragedy!!!! She hates to loose them... She is figuring this whole thing out... We as parents are too!
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Thursday, May 22, 2008

the busy-z's

 

The pictures are backwards in regard to time, but this is what we have been up to lately.....With a quick trip to the mall for a present for my friend Angie's mom... we just had to go ride the carousel...Ry and Jake get along so well it is funny. But Jake insisted on riding the dragon. Ry had already chosen a horse behind him but decided it would be way funner to ride next to him instead....(is "funner" a word?)
 

Ry really wanted to make cookies for daddy. The kids loved liking the beaters even though it had dough and not batter...
 
A few days ago I needed to fill a prescription at PCMC. It is a RX that I can only fill there because it for 1 is a compound... and 2 it is the study drug that Alex has been taking... So, we decided to ride Trax again. This was the first time I would be taking Ryleigh... We invited Jake, Joey and Angie to go with us... We also got push pop ice cream from the Rainbow Cafe and made a visit to the third floor to see Spider GUY.... Jake LOVED him... They were eye level to his, um, and they kept hitting him...Good thing he wasn't alive and could easily get hurt, "hurt him good"...
 
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This is the Trax ride with all four babies, We had a blast... Ryleigh was talking to an older man and she said to him, "do you have a lot of teeth?" he didn't he had only had four in front... The things kids say...

Tuesday, May 20, 2008

Hats

 

I decided to find all of Alex's hats and take pictures with them all...Here is a little picture of all...
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Wednesday, May 14, 2008

Spring Cleaning?


If your working on any projects that might give way to some large garbage... Bring it here.... It will only be here a couple of days....
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Look who came for a visit

Miss EMILY!!!!!

The Pearsons gave this to Alex for his birthday...

They were picking up all the bows and blankets for Ian's birthday project! http://emilyandian.blogspot.com

Ry was at a party, but Alex is totally crushing on Emily... (Older women, SHEESH)
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Monday, May 12, 2008

Any takers

Jeff hand made this chess/checkers case... We put it for sale on KSL but didn't get one call... If you are interested in taking it off our hands let me know. Other wise it is going to DI or some other place....



For our heart families out there we have six cans of unopened portagen, and some other tube feed supplies... If you need some let me know, we can get them to you!!!
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Friday, May 9, 2008

Going green, saving green....


Alex had an appointment at Primary Children's yesterday. We decided to save on gas that is 3.50 a gallon and take Trax!!!! This was my first time and I was plenty nervous... After a fun lunch with Homers, Ry went to play with papa and Alex and I went to catch the train. I had him in my sling the whole time... It was so fun. We caught it in Sandy and rode it the whole way up and back.... I might try doing that more often.. I didn't get stuck in traffic until we were in our car on the way home. The day before Gator went to have a hearing test, he never had one when he was born... Everything is great and we have no worries with that. They want us to still work with signs because they build such great communication skills. Then his appointment yesterday was for his Circ, we didn't get to stop by and say hi to anyone, besides our friends at the Picu front desk... Dr. Snow was the one who saw him yesterday, but didn't have any time to do it when we needed because they try and do this procedure during or shortly after others so they don't have to put him out so much. So Dr. Wallis is going to do it.. He is the same Dr. who worked with our little friend Haley... It is nice knowing Gator is in familiar hands. They have it planned for June 19th... We will be up there on the 18th for his developmental study. He is in so many studies, we hope to be able to help as many babies as we can. Then on the 19th he will have his circ and a sedated Echo. The sedated Echo is also for a study.... Well if you need to take a trip to PCMC, Trax is cheap and FUN!!!
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Tuesday, May 6, 2008

Found a way

After playing with things a little more... I realized there was a lot of traffic that needed those lists... So I am putting up a Hero's blog and also a Family and Friends Blog (Both under construction, pardon the dust) That will have the link lists... That way I can put on as many as I like... If you don't want to have yours listed let me know so that I can take it off.... So If you need an address check out The side bar for links... Thanks Brynn

Sunday, May 4, 2008

Rejected Kiss

Jeff totally got rejected and I happen to catch it on video.... Poor Gator all we wanna do is smooch on him... I love it, he is so yummy... We just bought him some baby cologne.. Now he smells so good you can't help yourself. When he starts getting a little stale, like breath.. we just splash on a little more and he is good as new... Oh- It is official.. The back yard is fenced in..Wooopie... I can let the kids go out and play with out the worry of the flight risk... I will take a couple picks and show how nice my hubby did.

Noses

How long ago was it that Ry stuck the peanut and so many other things in her nose? Well she forgot and stuck a piece of corn up there last night... The horrible mom that I am, I grabbed my camera instead of helping her get it out.




Hopefully she will remember this time... It is mean that I am laughing, but it is so dang funny... It only took one blow to get it out, we didn't even need to use the tweezers.. We got those from the hospital and they have come in handy for a bunch of things.... Nothing is as bad as what I put up mine as a kid... One of those prickly thorns... Maybe it is better that she isn't trying to pick things out, just stick things in..LOL

a warm-ish day


So we decided to walk to the park the other day....Ry rode her bike and I pulled Gator in his new wheels.... It was warm but I am still a little nervous and made sure he was really warm... Gator loved the slides and eating the wood chips( some nice fiber for his diet) and Ryleigh loved being on her bike and playing in the sewer with the boys... She got a princess bike with training wheels for her birthday last year and is really getting good at riding it... except for the braking part... The park happens to be located on a huge hill. Ry thought she could manage the hill but ended up racing down it at neck braking speed, flying off the side walk and over the curb, still managing to stay on and crossing the street to meet the other side of the curb that promptly bucked her right off and into the rocks... Mind you, I did not enforce the helmet which we left at home and she is lucky to be alive.... She didn't even have a bump... Thank you guardian angels, they must have had a busy day... Because there was no way for me to run to her with gator in the wagon on a hill..... So we practiced the braking until she has mastered it and also really enforced the importance of a helmet...One of our favorite family activities is to get a free ice cream for gator and shakes for the rest of us at Arctic Circles..... After playing hard the whole day gator was so tired and he couldn't finish his... But he wasn't about to give it up... He fell asleep with death grip on the remaining portion...
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Thursday, May 1, 2008

Two wifes

So this is me on most days...
I straightened my hair today, I feel like a totally different gal without my curls.... Ry took this picture of me!!! Not that anybody cares, just thought it was interesting to see... Jeff always says he has another wife... Well here she is.. I don't know if she is the nice one or the not nice one.....
With our hair straight Ry looks a little more like me don't you think? Okay she still looks a bunch like her dad, but maybe our noses are the same....
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