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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.

Wednesday, May 27, 2009

An investment

My little Miss has been saving for the best "thing" for six months. Doing jobs and earning her magnets (our rewards system that turns into money), making sure she puts away savings and paying her tithing.. She made her big purchase yesterday. A pair of skates, with matching elbow and knee pads...

oh, so fun! This is Ellie who came to see her try them out and cheer her on. What a good friend.
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Sunday, May 24, 2009

We need a DO!

His almost non existent hair is still not there... I am going to break down and give him a hair cut. It is so white/blond that it is translucent. I should at least, trim the hair that is touching his ears. The back is going into that duck-butt look.. AHHHH!

She is pretty white/blond herself. We needed a good look for the day. Good thing we live in a dry climate, otherwise we might have a serious hat day situation.
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Wednesday, May 20, 2009

Biker Babes


My kids love to be outside. They LOVE to ride bikes. If we need to punish them, we put their bikes in time-out. Gator should wear his helmet all day to avoid another ouchie on top of his ouchies... This kid plays hard. Ry is such a good little rider. She has had her fair share of falls, but seems to just jump right back on and keep going. She is going to be my extremist. WE LOVE IT!!! Hurray for warm weather, hurray for summer. I love the smell of sun screen clad kids, hot little boy head/hair and baths in the evening to keep cool while you sleep, fresh cut grass, some neighbors BBQ and wet cement from little cloud bursts... yum!
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Thursday, May 14, 2009

Wink

videoThere is too much to do outside while the weather is warm. So forgive, cause the blog takes a back seat to our fun.

Tuesday, May 5, 2009

a lot to chat about

We've had a bunch going on lately, so much so that I will just give snippets of the good stuff and continue to repress the not-so-good..LOL.. There isn't anything that is not so good. We met up with a new heart friend. She flew in for Women's conf. and it was like we had known each other for years. She also brought us some fantastic cup cakes, I need to visit the store. YUMMY.
Yesterday Gator had his limited echo and visit with his Cardiologist. We got better news. It seems that the Dig is working and has slightly improved the function of his heart. We are back on track for the Fontan. We do need to bulk up the dude. He needs to be at least 15 kilos so that he will recover faster from surgery. What a relief. I was really nervous for this appointment. I started freaking out about it way too early. Now I feel totally drained and I am sure it will take a few days to get myself back... While up at the hospital we went to see baby Grant. Gator is two, so now he can go back into the PICU with me. He watched things very closely. I am sure that he knew this place and could remember the sounds and smells. He wanted me to hold him the entire time we were back there. He loved seeing baby Grant. He kept saying "BEEBEES"! He also told him that he needs to get home and get better so that they can have a play date. Grant said he would do his best. Thanks for checking in on us....