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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.

Sunday, August 29, 2010

Accident prone

So Gator's case of injury didn't stop, or should I say hasn't stopped since we have been home from heart camp.... I bet you are wondering what this little picture entails. On Tues the 17th I was working on a client. (One of my last colors till the baby is here... I just can't stand that long.) Ry was off with Gracie who we loved having in town from Mass. I told Gator he could go out in our backyard to play because we have it almost kid proof. It is all the way fenced in, it has grates over the window wells, and it is typically free from crazy things that might make you worry. Anyway... He starts screaming bloody-gut-murder and I hobble/run out the door but I can't find him. He is running around like a little mad man, finally I am screaming "I can't find you, I can't see you!" As he comes around the side of the house. I scoop him up and try to see what is wrong. There isn't any blood anywhere and he looks like he hasn't sustained any bruising... I asked him what happened and all he can tell me is "BEES"... I asked him where, by this time we are back in the house... He shows me his little hands and now I can see them slowly ballooning up. I take him back to the bathroom to our first aid kit because I can vaguely remember that there is sting relief swabs in it somewhere. I thought at first there was just one big sting. I begin to count 3 no 6; at final count 7 stings... The poor little guy had no idea that those mean suckers had built a nest right under the ledge of the slide. I wasn't sure how many stings to worry about so I called poison control. This is the second time I had to call those guys for Gator. They told me to mark the stings and watch them, but 20 stings is usually the worrisome point. I made sure I could give him some Benadryl that would be an okay dosing for his weight and other meds (considering all I had in my cabinet was for 6 years and older). Those guys are pretty great cause they call back in about an hour to see how things are and then in 36 hours to see if there any new symptoms.... He completely terrified of bees and WAS afraid of flies, until we explained that flies don't sting. Gator told me he wanted to send the bees to the moon. Three days later he fell on his nose and scraped that, three more days later he was running without watching and face planted into the sidewalk creating a gi-hungus goose-egg on his forehead. Three more days later he was wrapped snugly up in his towel and tripped on the towel on the floor that catches all the tub slosh, only to hit the spot right where the carpet and the tile come together and scrape up his other cheek. He looks abused. I feel like wrapping him in bubble wrap. Good thing he smiles and keeps on going. Some say he is all boy, others say he is mischief waiting to happen..... I say.... this might all cause brain damage... Where can I get one of those giant bubbles to put him in.... HA!
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Family Heart Camp '10


On August 13th and 14th we went to Family Heart Camp. This camp is designed to get families together and celebrate our family/children with heart defects. It is a time for every type of family, those with children currently working through surgery, those who have angels, those who are the person with CHD's, heart transplants and everything in between, to rejoice in our commonality, lift and comfort each other. I like that they heat the pool so that the kids can actually swim and enjoy it. Friday, my folks brought up the huge movie screen. They own a business call Backyard Cinema Utah. Each year they have generously donated a movie night to the group. It is so fun to have allllllllll the yummy treats and sit out under the stars for a movie. As you can see Gator also sustained most of the injuries this year. My suspicion is, he wasn't getting enough oxygen because we were at a higher altitude. He was fatigued and really clumsy the whole time we were there. Next time I will bring up a few extra supplies like O's and his pulse ox. Anyway, he got his black eye from tripping over feet and not catching himself fast enough. Not shown is his knee and hand where on one of his many falls he encounters lots of loose sticks and buried slivers into his hand and cut open his knee...
Ry has an absolute blast hanging out with her friends.
One of the neat things is the presentation symposium. I learn so many things and can't express how valuable to me this part of the program is. Gator and Ry and the rest of the kid gang are entertained by the Mad Scientist. After all was said and done it was really fun but I was plain old tired.
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Fun Fun Fun!!!


I am posting much later than the actual events occurred because I want this in my future book.
I took my camera to our family reunion for Daddy's side but I forgot to take any pictures. It was really fun to see everyone. We left on August 7th and came home later the 8th. For daddy's birthday we celebrated at Lagoon. We love Lagoon. I know I am cheesy to dress us all in the same color, but it is fun for me and it helps me to see my group. Uncle Ry, Auntie Lisha, Gracie, Grandma and Grandpa, Auntie Pres and Auntie Ave also joined us. Because of being so late in my pregnancy and Gator not being able to ride any coasters or big rides I took him to do all the little kid rides. He rode the bumper cars about 7 times. I think they were his favorite.
I had the camera so I mostly took pictures of Gator. Plus his rides I could actually see him on instead of a gi-hungus blur.
Ry and Gracie had so much fun together. They were both the perfect height to ride all the rides. Ry tried everything except the Spider. She tried Wicked and Colossus.....Everything that we had time for. The water at Lagoona Beach was really cold. I made sure to stop and check Gators sats at first aid when we first got there, he was doing really well till we hit the water. He was so blue after five minutes it wasn't even fun for him. So we spent five minutes in and five out... The nurse from first aid watched us and even commented on how blue he was, telling me that if we needed it we could go back and get wool blankets and oxygen. I was sure we would end up going if he didn't turn back to pinkie-blue after he warmed up a little.

I was glad to have all the family come. It was nice for everyone to have someone to go on rides with.
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Wednesday, August 4, 2010

Kindergarten Girl


She started on Tuesday. She loves it... I miss her. She seems so grown up. She was a little nervous to walk up the first day and find her line, then once we were there she shook her hand shoo-ing me away and told me she had this. I felt good the first day cause there was a dr. appointment to fill the time. Today I really missed her. I feel old and both daddy and I can't believe how fast this all happened. I can't wait to hear all about the things she is learning and discovering. The next thing you know she will be graduating from HS and going away to school...
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Primary Pioneer Trek


Gator kept asking if we were all going on the Pioneer "truck" I think he was sure we were going on something he didn't want to miss out on. Ry had no Pioneer-ie type shoes so I was going to have her go bar foot and really have the experience, just joking she just had flip flops instead. They even had the Pony Express (a real horse) show up with letters from the parents to the kids. I helped make scones for the the kids at the end... I wasn't feeling up to trek. Gator helped me and he we all had a fab time.
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Tuesday, August 3, 2010


I just know that as time gets closer and closer to baby day I am not going to want to move much. So here are a few shots of the pre-birthday pics for Ry. Also this shoot turned out a little lighter for Gator too.. I was so happy to have our little Grace and of course my fave photo gal Ericka. I am still learning camera stuff every day. The main focus this time was my gold reflector. I like the effect of warmth. I think I am going to try the white side or silver next... Yeah!!!! for parks with cool tires and giant lollipops from the dollar store!!!!!

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