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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.

Saturday, December 19, 2009

Ohhh, Ho ho ho

It is almost here!!!!!

Thursday, December 17, 2009

Updates updates.....

Gator had a Cardiology appointment Monday, it was nerve racking building up to that appointment. We started telling him about the Echo and the Dr. appointment weeks before he actually had it so that he would be ready and not fight us the whole time. He did really well. The Echo was first, we had a sucker, movies, cars and daddy to distract from the "magic wand with lotion". We really love to have Belle because she knows us. Then we got to visit with Dr. Su, it is always so nice to see him and he had so many + things to say. Not improvements but no declines and that is as good as improvements to me... He went up in weight and volume of meds and is moving right along... So the big question is..... When is the Fontan? Well, I got my way and we aren't even planning it yet...Yeah!!!! We have time to just love him and get him bigger. I am hoping that with this he can get a bigger Fontan and be able to keep his original anatomy longer. I am also hoping that he will be at a more understanding age. An age when we can explain why he is having tubes and things and won't try and pull them out. When there is more to distract him like learning to read and playing video games and things like that. The down side is that he will most likely remember that he had surgery and that he was stuck in the hospital, and he will probably miss some school.... I kinda think those are minor things. So we go back in six months to another appointment, that will be in May when he is already three.

On a side note Ry and I got to go see the Nutcracker.... It was AWESOME>>>>

Sunday, November 29, 2009

The day after..

Ry was in a parade the very next day. This is the parade that brings Santa in a bright red semi to Macy's. They jammed out to Party in the USA... In the back ground of this picture you see the fire truck. Gator was exstatic, he even got to go inside the mobil unit...


We were already tierd. We got up for Black Friday at 4:15 am....

He loved the TRUCKS.....
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We are Thankful!

We are Thankful for good health, for Doctors who help us to get better when we are sick, for toys and for family...

Mommy's family

We had way yummy food... I think the turkey pretty much melted in our mouths, the sweet potatoes were a hit, the rolls tasted homeade, and the veggie platter was one of my fave things.

Stuffed... Ahhh it feels good.
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Monday, November 23, 2009

A word about weight

Now I know what you are thinking... I am not going to say much about my own weight except that it isn't were I hope or know it should be....

No, this is about Gator AND Ry ry (for that matter....)Weight is super important for a heart baby. The bigger they are the better they fight off infection, heal faster and usually have less problems later. If they have a little extra it means they won't come out looking like a mini stick figure.
Gator is 27 LBS I know I weighed him today. That is a whole pound down from the last time I weighed that kid. One pound, not just ounces but a whole pound that I fought to put on his body... Gaining weight is really hard for him.. Practically everything he puts in his mouth gets burned off by play. So putting extra on him is a trick. I think it is because he grew taller. He looks chubby cause of those darling cheeks he sports, but nope. So here is my issue, he is a pretty darn good eater. For a kid who has had oral overstimulating from tubes down his throat you would say he was a REALLY good eater. There are a few things he won't eat, that I want him to eat because although he needs all those extra calories now. What happens when he is older and has no good eating habits and turns into a tubba? What happens when his sister sees him get away with food murder and we don't let anything slide with her? She must eat a little of something I prepared, I am not a short order cook. So a fantastic example she is, and even though there is very little she won't at least try, I expect her to stay that good example... So is this fair? Gator will often pick and choose and sometimes eats very little of the dinner. Then later when we have treats or snacks, I let him have those too. If it were Ry there would be no way she could have the extras without eating the other... I figure he can use all the extra calories he can get...

I sure wish I could figure out how to do this fairly and still get Gator to gain weight. Maybe someone could just shave it off my belly, thighs, and under arms and give it to him.. (in small doses)

Also it is tragic that I can't get sick with the flu, I am like 6 flu's away from my goal weight.. Dang it.

Okay even if you are not a feeding specialist, but you have an opinion, I would like to hear it. Be brutally honest.

Wednesday, November 18, 2009

Just us

The girlies

Boys

The WHOLE DANG GANG!
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Ry's fave mode of transportation.

Gator's fave...

It was so pretty...
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They all turned into little angels when fast asleep!

Here we see Gator with his addiction... Chocolate milk...

One of the things Daddy was itching to do was buy a real sausage dog from a vendor off the street... Oh, man it was tasty.

we walked the "Paul Revere" trail. The trail is marked by this brick pattern.
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Crud these are outta order!!

Right out side the frog pond...

There are tons of trees there and tons of trees means tons of leaves!

Three little munchies or is it monkeys...

posers
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MIA

Vacationing in Boston...

The whole gang

The rock I added to the pile...

Mementos of acorns and rocks she collected along the pond, I wasn't too happy about having them so I told her to take a picture keep two and throw out the rest for someone else to enjoy. They even made it all the way HOME from Walden Pond Mass.
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Found

I found the Halloweenie pics I thought I lost. These are from the nig day/night

She kept saying how she even scared herself

Both of the my litttle monsters...HAHAHA
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Friday, November 6, 2009

some-a diss and some-a dat

So what is it like now that Gator is bigger (he just weighed in at 28 lbs) and stronger. It all seems normal to me. He has meds every morning and night. We wash hands through out the day and we stay home more in the winter. We wash his bedding a lot more, I have it in my head that helps him to stay well.. His room has it's own home health... It is kinda interesting I guess. These things that seemed so weird to me before has grown into our lives and is all he knows. We check his SATS some times when he looks blue and we make sure that we have oxygen on hand. I guess what I am trying to say is, when we first started all of this it all seemed scary and overwhelming. But it all changes over time, as you adapt, form new habits and just kinda get used to it all... I wish someone was out there to tell me that when we found out about all this. I think it would have given such hope...

Wednesday, November 4, 2009

BOO!

Scary face

The Bride of Frankie

Little Frankie himself
Boo!
Some how I lost the pictures of the actual night. No pumpkins, no curly fro we wrapped in perm rods, no little frankie dressed in ten layers... Bummer... At least I have them, in a picture in their costumes...
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Tuesday, October 20, 2009

Still working on perfection





I asked this fine family if they would let me take pictures of them all... They had the hard part of putting together all the outfits and looking so dang darling... I just had to push my little button and capture it... Thanks Guys.... YUR D BEST!
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super scary....


A little preview
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