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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, February 28, 2012

Spring cleaning?

I think it is time for me to start making the LIST!!!! Every year I feel the need purge things that I am not using/wearing and also time to try and clean things that have not been cleaned since the last time I began the LIST!!! This year I plan on starting the first day of March... 
HOLD ON, 
that is like one-ish days away... 
I need to remind myself, I am not finishing my spring cleaning just starting it... 
The first room I plan on attacking is the kitchen. There are windows, blinds and outside/inside of cabinets to wash and condition. I am totally looking forward to ditching my amazing cottage cheese and sour cream tub collection. I need to plan on getting rid of all the extra lids that are clogging up the drawer. I definitely need to rid the toaster of the crumbs in the bottom and wipe down the outside of all my appliances.... 
Martha suggests I pull out the fridge and dust behind that sucker.... 
She also says it's a good time to clean out the freezer... 
The Fly Lady says I should be cleaning out the fridge once a week, So much to do....
 I need to have the whole house finished by the end of April so I can play all summer with minimal house maintenance and work on the garden. In my opinion the garden needs a ton of care. I can't be caught up in huge house cleaning when I need to be outside. It is kind of therapeutic to think about how it will look when it is done... YAY!!!

Munchie is doing so well with Signing.. Today she told me straight up "CACA" and patted her bum... She is so happy she can tell me what she wants. Although that doesn't always mean that is what she gets...

Gator is constantly wishing for a friend to come and play... I can't wait for summer when I can say go outside and play. He is going to need some firm rules to keep him safe. Remember when we could go outside and play with out the fear that we would be nabbed or harmed in anyway.
 He is at the point were he wants everyone to play what he wants. Sorry friends. I am trying to teach him that he needs to compromise, it's a rough learning experience. He'll get it eventually.

Ry Ry is so happy about her room. We haven't done much since the pictures I posted. I need to find more minutes in my day to sand and finish priming... Then I can paint it... Maybe I will go work on it now.....

Thursday, February 23, 2012

CineHope!!!

I just need to share this here as well... I am asking for help again... Sounds like me doesn't it.... Many of you know about the amazing Intermountain Healing Hearts. I have served on the governing board and now I serve on the executive board. This wonderful group has helped our little family heal in a way that is different than doctors and nurses. It has given me a place to vent, to ask questions from veteran heart moms, to feel like we are not alone in our little journey... So here is the deal, Open Air  Cinema is a company that builds and sells those huge out door movie screens... I bet you have been to a movie in the park? Well they are giving a non-profit organization one entire 20' system.... This is a huge deal to our group because at family heart camp we have been using these exact screens. AND we have so many other events we could do if we owned our own equipment! I feel like I am paying it forward in a way by helping out... So here is what you have to do....

 go here http://www.facebook.com/openaircinema?sk=app_204169126292521

Then find Intermountain Healing Hearts

 click vote!

Then get a warm fuzzy for helping me out!
 This is at Heart Camp! We have so much fun!!!

Tuesday, February 21, 2012

This better work

Oh My gosh!!!! I totally did something wonkie with my blogger thing.... I hope I can figure it all out!

Anyway here are the video's of me and the kids being crazy tonight!
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First me!!!!

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Now Gator and Ry give it a shot!

Can you do it? Can you place a grape on your lips... Blow it up in the air and then catch it in your mouth? Oh my many worthless talents.

The Grape thing about it all!

Are you surprised that I will post this horrific image of myself... With 4 grapes shoved into my upper lip? Let me tell you the whole story. We have a turkey.... I have never actually prepared a turkey before and I was planning on attempting it for dinner tonight! I have been thawing it correctly in the fridge and today we were gonna eat it... A song come to mind from Gator and Preschool... "I'm glad I'm not a Turkey a Turkey a turkey........" anyway... I got side tracked as I sometimes do and missed my cooking window. Now it would be way late to eat or it would be cooked and need to be reheated tomorrow... So, I improvised and did a silly mommy thing and made grilled ham and cheese sandwiches, grapes, and potato chips. Not exactically healthy but better than cereal. Daddy was busy tonight so I was also on the entertainment committee. You know I am a total goof so I showed them how to shove grapes and do a launch and catch.... Then because I loved that we were giggling and having a great time I took a little video and pictures...

Ry can fit eight grapes in her mounth...

Gator tried, he was laughing so hard he couldn't get them shoved anywhere.
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The big girl room

We are under construction at our house. We are working to finish another room for Ry. She currently resides in the playroom which has worked out great but...... It is time......(did you say that in a Rafiki's voice, from the Lion King?) So here is the bones of the project. The kids have been helping out. They are good to help.

Everything is roughed in....

Ry is getting a loft/Swedish built in bed. Google their awesomeness!!!! She is really excited.

All of the storage is under the bed so her room should feel like it has a ton of space.

The closet is going to rock!

We haven't decided which purple to put on the wall... In this light it looks a little gray!

Munchie has tasted almost all of the building materials.... Mud, paint, dust, and last night she was eating Spackle!!! I kept telling her they are not baby friendly!

Everything is a little harder with her around to test things out!

We usually have to end working after something like this happens....
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Dinner Theater

We took our bigger kids to a dinner theater! Gator was by far the youngest child there. I am sure he knew very little of what was happening in the love story between King Aurther, Lancellot and Guinever..... But, I think he had fun and he liked that the actors and actresses came to our table and engaged him. He got to play the fanfare with Malligot.

Ry wouldn't play in the fanfare but would dance with the "villagers" she is funny. She really really loved it. They would sing so close to you and we could talk to The Lady of the Lake! Speaking of TLOTL, she was Ry's favorite person in the play.

The food was pretty good, It would have been awesome if we could have ordered anything off the menu. But, we understand that the staff couldn't keep coming in and out during the performance. (daddy wanted all you can eat ribs...) Those Kazoo's were a hit.

This is the Jester! She had a fantastic voice while singing and a funny voice when she spoke! Gator kept checking in with me when she spoke... "that is her silly voice, huh, mom" "that voice she is doing is crazy, isn't it?" and so on... He was a little stuck on it.... Both the kids were very well behaved for a mostly mommy and daddy event. I think we might try to get some more culture every now and then.
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Wednesday, February 15, 2012

Gator says

Welcome to another (short addition) of Gator says. I almost forgot to write these down.
Both of these have to do with what I believe is too much time with an Ipod.

Gator is sitting on the couch with head phones on and singing 'Party Rock Anthem'... All the sudden Gator says "What the H**L".... Both daddy and I are stunned then he continues to watch, then...."What the H**L"...... AAAAHHHHHH no more of that for Gator! He picks up on the things we don't want him to say!

Then later he is playing and tickling... he jumps on daddies lap and says "I'm sexy and I know it" I am so surprised he didn't say -Wiggle wiggle wiggle wiggle wiggle.....

No more LMFAO for Gator....

He will have to shuffle to something else!

A complex bird problem

Yesterday we had these two little birdies fly into the garage. In a panic they kept flying in circles and going back to the same spot. They would chirp at each other. I am sure it was the wife yelling that they should have gotten directions. We tried to get them out by luring them with bread crumbs they weren't really into that. Then I tried the broom. Yeah, that doesn't work in a garage with super tall ceilings. So I just had to wait until they figured it out. I left the door open and kept checking on them until I went in and they had finally made it out!

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Valentines Day

We had a wonderful day of LOVE! It was rather busy too! I was helping two friends with their kids in the morning and I loved seeing them all so jazzed to get to school and pass out their Valentines. Gator took Harley Davidson valentines with pencils. It was a great excuse to get Gator to practice writing his name over and over. Which he happily did. Then once everyone was picked up/dropped off my boyfriend/hubby took us out to lunch! I ran back to Ry's school to help with her class party. Gator played on my phone...



Munchie wanted to be right in the middle of the action. (As Always) I couldn't snap a picture of Ry because she was too busy enjoying her class party.
We made a yummy Elk steak and bake potatoe dinner and then went to get frozen yogurt as a treat!
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CHD WEEK 2012

We have so much to be thankful for! February is a time we reflect on those we love and those we appreciate as well. I am thankful for CHD Week or heart week to remember all the love that we have felt through out our heart journey.

We all decided that if we had a chance to throw all of our trials and life lessons into a basket, we would surely take our same ones back out again. It was hard to experience the things that we did, however the blessings and lessons are so much more amazing that it is so worth it all.

Gator's special heart is amazing. 1 in 100 babies are born with some degree of CHD.... Wanna know something interesting... There are five people on our street alone. Two mom's who didn't even know they had a CHD till they were past having children.... The other two boys years older than Gator and yet still amazing to me. Five on one street!!!!

We wore our heart clothes each day! We also did a kick off at the wonderful Taylor Andrews!

Gator had his testing done.... He blew the speech therapist out of the water with his vocab/description of things. He didn't qualify for any of the wonderful programs. However, there are things to work on. With a list of places to procure items that will help me, I am determined to help this little guy be ready for kindergarten. There is still time and we can be better. I was right in feeling that his fine motor skills need some help. They want us to make cookies as therapy. Digging out the chocolate chips and then pushing them all in again. Hey I can handle that kind of therapy. We are to also try a peg board. We have been using Legos and that is helping some but Gator will still try to compensate by using his mouth/teeth to get little things apart or together. So we think a peg board will help. I am going to check out some apps and we are also going to check pintrest and see if there are others out there with more methods...


Munchie needed more heart things to I made her a skirt... I wanted to make shoes too, but I ran outta fabric... Meh... next year!



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Saturday is a Special day

I am teaching them young!!! We are in cleaning mode on Saturday morning. Everyone gets an age appropriate job/jobs and we go to it. If we can finish all our cleaning, we usually get to play the rest of the day. Munchie follows after me and likes to be right under my feet. She must be picking good things up because she is really getting the potties to sparkle! Sorry, bad pictures, cause I grabbed my phone really fast to shoot these before she tried scrubbing the shower and sorting laundry.


It is always nice to take little breaks and the girls played a few giggle games while Gator was finishing his room. Ry would put the blanket on her head and then pull it up and the static would make her hair all crazy. Ry would toss herself in a fit of giggles and because she was laughing so hard, Munchie would laugh and laugh... It was great fun.




It didn't work as good on Ry's longer/thicker hair. They are using the very wonderful pink blankie. Munch calls it a gankie! She is talking up a storm.... Funny little things keep coming out of her mouth. She says book and sings "baby baby...oooooooh..... baby baby...ooooh" just like Justin Beiber. Daddy and I are determined to get it on tape and win millions of dollars for having the youngest child we know sing JB's songs... Just 17 months and belting out tunes.... And she is a dancing super star... All these Homies love to get their groove on... I wish I had a camera ready all the time...
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In this video we are watching just a tiny bit of her usual dance moves.


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Starting Her lessons

Ry and Grandma H are doing piano lessons. I love seeing these two pound away. Of the course the basics are the first thing to learn. Next we will move onto some other awesome tunes.

I wasn't a great practice-r as a kid. Now that I am the mom I need to get on some sort of schedule so that we can fit everything in. She needs her practice time. Ry also needs to read. We need to practice spelling and of course she needs to have a little down time. It is a rush each night to get everything accomplished. It is working for now.
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Calling for a chance of.....MILD?

The weather has been so dry this winter and I am sure we will have to pay during summer when there isn't enough water for the lawn. It has been nice to have walks, enjoy outside a little and play with friends.

It is still cold, just no white stuff to get us all soggy and wet. Munchie is digging her coat... When she wears it is makes me want to say... She's so Fluffy!!! Just like the little girl on Despicable Me.
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Thursday, February 2, 2012

A this and that post

Things in our household seem to slow down at this time of year.
That is, until I really look at we have going on and then I realize that we have actually sped up... Maybe gone into early warp speed, when everything around you looks like it has stopped... Yeah that's it!
 Daddy has been to and from a trip to install cabinets. He is busy with work and church as always.... He has a gym pass and has been using it a ton.... 5:30 A.M. comes really early to me, but he gets up to do that spin class. Whew! He is just 8 pounds away from his goal weight!
I had another ultrasound to determine the size of those pesky cysts... The techs couldn't diagnose, but things looked different from last time and I think it is different "good". I won't be able to chat with my Doc till she gets back from a vaca. I am assuming that things look stellar enough not to worry for now! I have had a few weird side effects, I just bring them up to her when I get a chance.
Choir started back up for Ry and she loves singing, she is not yet sure she wants to perform... Silly, all that work at rehearsals to not even be in the performance....I know she gets that stage fright thing from me! I am a total Shower Diva, don't ask me to sing in front of anyone! Ry Ry has one more basket ball game this Saturday and her season is over. She has a natural ability and plays hard. Being her first year she has really improved over the past couple of weeks. Unfortunately it is not her love. Dang-git. She thinks she would like to try an art class next. I will have to see what is available. She also started piano lessons. She really loves this and can't wait till she is playing little songs. We got a beautiful hand-me-down(pretty much perfect) piano from Daddy's wonderful Grandparents and the kids love having it in our home! I took lesson's as a child, not enough to play for anyone but enough that I sat down and played a couple of the Primary songs and Hymns that don't have sharps or flats. That shocked Daddy who asked if it was me playing? I guess after ten-ish years of marriage he never knew I could play a little. I am kinda sneaky sneaky like that! Hehehe!!!
Gator told me today that he learned about Ground Hogs in preschool and we are having six more weeks of winter. Then he went on to ask if that was when we actually started winter or if that was from this day? We have had such a dry winter that I am sure he is confused on that matter. He has this gnarly scratch on his nose from a carpet burn that I have wanted to pick the scab off of. I left it alone...... He got in the tub and it soaked right off! I was so thankful I didn't have to tie him to a chair and take it off!  I am not usually a scab picker, I am more of a sunburn peeler... can't really do zits on others either!!!EEEEWWWW. This scab was right in the middle of his face and I am sure it was right in his line of vision. It was bugging me on him, I am sure if it was on me I would have had a melt down.
Munchie is full of life. She is a climber. She found out how to climb onto our blanket chest and throw herself over the side of the couch and then slide off like it is a a gymnasium or something. I can see this summer being very busy for a certain little person and her momma (the chaser). We have levers for door handles and she is so tall that she can now open all the doors in our house. I have to make sure that we are locked in, or I am sure she would escape to find some other house to play at. Munchie is extremely stingy with her smooches. It has to hit her in just the right mood to pass one out. She almost never offers one. The older two are always determined to plaster the little thing in kisses and she doesn't like to be held down for that business; I tell you what! Recently, she will wag her finger at them after one of these attempts and tell them..."NO NO NO!" Munchie loves her pink blanket! It is one of those silky on one side, super softy the other... Just like yours Gracie! She carries it around all day long. I guess I am going to have to buy a couple more for Valentines day for her. She carries it through hair piles and other yucky things and I have to wash it a couple of times a week. The hard part is that she wants it for naps and we have to borrow Gator's green snugly blanket until hers is washed and back to her. I thought she would love a stuffed animal,  NOPE  it's this hand-me-down blanket that she fancies.

Next week is heart week! I am taking Gator and Munchie to Taylor Andrews tomorrow for a fundraiser kick off !!!! Go TA! It should be a busy week.