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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, July 28, 2009

Oh, it's on!

After visiting with Dr. Grimmer today. It was decided that Alex is a great candidate for tubes. The doc thinks it will really help with some of the issues that keep landing us in the hospital. I am thrilled it all seems so easy. It is only a fifteen minute procedure. I will just get my bottom in a chair and he will be done... Then it is icee pops all around.... I really like his ENT doc..... So the third week in August we will have it done... Everything else checked out nicely... Tonsils, and up his nose. You should have seen the surprised look on the doc's face when Gator obeyed to look in ears, nose and open wide for throat. It made the doc chuckle a little when I told him he was doing so well because I promised no pokes today. Meaning no shots... Gator boy was even more tickled when they had a "bus-driber" sticker.... Right on!!!!

Thanks to all our readers to have stuck it out with us... I know my ramblings aren't always the most interesting, but we KNOW ya lubba lubba love us... WE LUB YOU TOO!

Saturday, July 25, 2009

Made that way

Today we helped at stake baptisms. I was in charge of leading the music. Our friend who plays the piano, just had a beautiful baby girl. I can't remember if she is five or six weeks old. ANYWAY.
I got to hold and nuggle her for a few minutes. Ry is just now finding out how darling babies are, she very sweetly asked to see her scar. Now this took me off guard a little. I wasn't sure if I heard her right. So I asked what it was she said. "I want to see her scar momma"
I thought huh... I told her the baby didn't have a scar and Ry didn't have one either. Ry said "Well, I had one when I was little"!!!!!! "Nope" I told her, "You never did". Later I was telling the baby's momma about this little conversation. She showed Ry her baby's tiny perfect chest. I loved it. How interesting Ry's thought process must be. I wonder if she thinks all babies must stay in the hospital for a little while until they are DONE. You know; like, there is finishing up that happens. The only experience she has had seeing very small babies is Gator, other heart babies, and her newest cousin Wells. He also had a few challenges and needed some extra love to get better. I guess she can't remember anything different... I love how kids' minds work.

OHHHHH! and by the way, Gator asks for gum everyday, multiple times a day. I am "sticking" firm to-NO Gum for you until you are 49.....

Friday, July 24, 2009

MIss AmEricka




Still building my "folio"... I love this location, my friend Ericka is a BABE, and it was so fun playing with my camera.
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The pics


This is the disc of pictures I sent Ry into that big store alone... Someone is going to call DCFS....
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Wednesday, July 22, 2009

What the GUM!!


I had to have some blood taken today. I gave the children some gum to keep them happy while I was busy. Gator has never had a problem with gum until today. On the way home he happily played in the back seat. Then Ry freaked out. "He has gum every where" ! I was nervous to look in the rearview. I peaked just a little, I hoped it wouldn't be as bad as my four year old discribed. AHHHH! IT WAS!. I had to pull over. I jumped out, went to the back door to get a better view. It was every where, not just a little clump that I could pull out and worry about when we got home but strings in his eyelashes, eyebrows and hair... Because I was freaking out he started to cry. What was I going to do with it in the car, what could I do to even make it better until we could get home.... nothing... so I took pictures. I called daddy and my mom. I needed to vent so I didn't kink his wind pipe... We still needed to do a few more errands. Some would wait, one I was doing right now... So I sent Ry armed with $ and my card into Sams Club to retrieve the disc of pictures. I could do everything else pretty easy, but we would have to come all the way back into town for this. She did great and Kathy the door lady was really surprised to see only Ry... So I jumped out and had her come look at Gator. (She had a good laugh) Then we ran home. I grabbed the supplies. Goo gone and towels. As I was grabbing the camera for one more pre-tubby shot, Gator emptied Goo gone on the floor, cabinets, sink, and toilet... Nice!!! another mess. I wiped up and thought, at least this is making the bathroom cleaner. I stripped him down and layed him in the tub. Sprayed the Goo Gone on and got to work. It came out pretty easy. I used a comb and he screamed; I used my fingers and he screamed; I used water and he screamed.... The real task is to make sure all of the cleaner is off him so it doesn't irritate his skin. Then I put him in a towel, took a picture and went to put away the cleaner and clean up the bathroom. He jumped right off the couch, headed down stairs with Ry and El who were playing in the playroom..... MORE SQUEELS..... the girls come running up stairs and report that Gator has POOPED on the floor in the playroom.... I went to grab the cleaner and the towels... Sent them all upstairs and cleaned up the mess. I came up stairs only to find my little poopster was spreading it all over Ry's bed spread and decrative pillows.... BEFORE> I cleaned up THAT mess. I cleaned and diapered my mess monster and put him safely down for a nap. Then I cleaned up the rest of the Poop-tastrify. Needless to say I need some chocolate and to hold still for a minute.

P.S. The close ups with sad Gator faces are so blurry because I took them with my phone.

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Tuesday, July 21, 2009

Exotic Fish


These little fishes love to swim.
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Monday, July 20, 2009

Girlies Camp

Those are the gold panties on the bishopric's heads. That is the tire we had to change before we could pull the trailer home. That is the fire that Brother B built, using his mad-log cabin-fire building-skills. Here are some of the girls-grrreaaat. That is a mallo shooter, danger. This was a fun time at girlies camp... Thanks for inviting the bishopric and letting the wives tag along.
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Just how cute

This outfit is authentic Ethiopian, when our friends went to bring home their babies they also brought Gator and Ry outfits. Ry wore hers until it was worn out. I saved it in my ceder chest for her when she gets older. Gator on the other hand just now fits into his. He looked so darling I wanted to take a little photo, but he wasn't having it. The situation went something like this...
Mommy: Gator, mommy wants to take a little picture of you in your cute clothes. Is that okay? (camera in hand, ready anyway)
Gator: (first picture) NO!
Mommy: Please, I think you look so handsome I want to remember how sweet you look.
Gator: CRYYYYYYY! UH uh!
That was it two pictures of an unhappy little man. O-well at least I can remember what he looked like in his cute clothes. It kinda looks like he is looking at himself in the left picture. CRAZY
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Saturday, July 18, 2009

A side note!

I recenly recieved a darling book from our thoughtful Aunt Wendy. It is called Tear Soup. It spoke to my heart.. Thank you. If you get a chance to pick up a copy, it won't take you long to love it too...

Speaking of books..... I got to see the Newest Harry Potter move tonight... I thought it was really great. The candy counter attendant told us that they are making the last book into two movies... Phew, I was worried we would just have one more.

And this is it... for now!!!!


The 4th of July!!!
Nothing better than sitting with papa eating taffy, stomping on Poppers, having Debbie yell at the water gun squirting baseball players "Is that all you got?", having brothers hold you to be drenched by those water gun squirting baseball players, having rides in wagons, getting pictures with the pizza guy and just enjoying the whole DANG GANG!!!!!
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And this...

The 3rd of July!!!
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Some more...

My children could live in the water..


GO FASTER!!!

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And this..... IHH picnic 2009

this was my "heart beat bunt"

crafting and eating snow cones, it really doesn't get any better

watching the magic show

cute shirts....
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And this... A trip to Idaho




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So far this summer we've had this....

Tons of birds... and bird poops!!!

just a few inches away..
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Friday, July 17, 2009

The future.

Lately it seems like many are wondering what Gator's next step is. We are living such a normal life that no one would know that he is medically fragile. He "looks" healthy to so many, including us that it is nice forgetting that he will need more surgeries and medical treatments. So this is the synopsis.
Currently Gator is doing better than ever. His Dig and summer is giving him just the boost it takes to feel stellar. His saturation levels are in the high 80's to low 90's. He dips sometimes, but for the most part is doing really well. He was weighed currently and is about 26.4 LBS. That is good news because unless he goes into heart failure we are just supposed to pack on the pounds. He needs to be at least 15 kilos or 33 ish Lbs for his third stage surgery the Fontan. He doesn't go back to Cardiology until Nov. Now this could be his final surgery for quite some time. Although we have heard that because the right side of the heart, the side that Gator has, is not smooth muscle it will eventually wear out. Now that could be at any time for him, it could be one year, five years or it could be many many years post op of the Fontan. We just don't know because there are not many HLHS kids out there with their original anatomy. We did have the opportunity to meet a fantastic gal at the IHH picnic who is 23, married, going to collage, and just got the green light to have children. She has HLHS and also has her original repaired anatomy. It was so cool to meet her. It was also very inspiring. So it is sit an wait at this point. Gator will have his ENT consultation at the end of this month. I think it will resolve a lot of problems if we do have tubes put in. He will not have as many or any infections which will mean no antibiotics which means no c-diff. His last antibiotic seems to have passed through his system without a problem.(knock on wood) So maybe it behind us.

So that is were we are.

Wednesday, July 15, 2009

well thought out

Ry thinks that all fluids come from cows... This means that white milk comes from a white and black cow. Chocolate milk comes from a brown cow. Yesterday she informed Jeff that orange juice comes from an orange cow.

We survived Girlies Camp, and have some funny laughs, the cup game and the gold panties burning. I am so far behind in photo's that It will be a couple of days of pictures...

Wednesday, July 8, 2009

How we've been do'in

My mom used to use a phrase when I was little; I didn't like or really appreciate it until now. When I was upset, angry, or sad and it showed in the expression on my face. She would look at me, and try and get me to laugh by saying "If you keep holding your face that way it will stick like that forever" Then she would pull a funny over exaggerated expression and I would end up laughing and it would take the strain out of the situation.

Well we are holding our faces with smiles hoping they stick that way.

We are really doing great.

This last baby failure has certainly been the hardest on my body. I am getting better and I haven't needed to have any surgical intervention (luckily). I understand why it has happened, I have accepted that things like this do happen. But, the darn cruddy part is that my body is so slow at recovering and I don't have the happy part to make it better. My emotions have healed, now I just wish I could go swimming. LOL

Daddy is busy as ever. We got invited to attend girlies camp this weekend. We are also going to do another assignment at the temple. It is run run run as fast as you can for him.

Ry is funny she loves playing outside at about 6 p.m. when it isn't super hot and asks on a daily basis to go on a walk. I need to come up with some fun projects to do inside in the AC to hold her over to the evening. She visited the dentist again, no problems and no cavities. She also asks for play dates every day too. I was hoping to work with her letters, I haven't, instead I have slacked off. I have taken her to the library, we have read tons of books together. Just no letters. pOO!

Gator is finally going into see the ENT at the end of the month I looked in his ear and I am no doctor but it still looks pretty ouchie. He is talking a mile a minute, his new favorite thing to say is CRAP, and oh goosh! Or, BIG(insert any type of vehicle here) ! He hangs on everything. He hangs on the door to the oven and pulls it open which knocks him to the floor. He also hangs on the island in the center of the kitchen, today he smacked his lip and because of his asprin he bled and bled. It freaked him out a little to see all that blood. Nothing a little pressure, a couple paper towels and a new shirt couldn't fix.

We are still planning some fun things this summer, I was gung-ho about doing fun things and now I have kinda sizzled out a little. I gotta make my list of things to do before summer ends just so I can make sure we do it all...

I have a bunch of photos to post, so you can see that I am not a totally lame momma.