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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.

Monday, February 28, 2011

Kids are funny


Gator wanted me to take his picture eating!
That isn't even the funny thing.

Today Munchie and I went to Gator's preschool to do a little show and tell. This was designed to help the other 3 and 4 year old students to understand why Gator had stuff on his face. They were very curious and I explained that when he was born his heart had an ouchie. He wore oxygen when he was little too. I brought pictures of his happy baby self wearing oxygen. Then we talked about how the air blows into his nose and helps him breath, this helps his heart to feel really good. I brought another nasal cannula so the kids could try it on and let the air flow into their noses. They thought it felt funny. I kept saying "So he is wearing this to help him breath" and "this will help his heart" and "this is so he breaths better" and "He get air from these tubes to help him breath". Then we let them see his pulse oximeter, try on the red light and see the waves. The kids thought it was all pretty neat. We talked about how we need to be careful not to trip on his hose and how we can help him not get stuck by not standing on it. Then I said, does anyone have any questions? One little boy raised his hand and said (remember that this is show and tell for three year olds) "ummmmm, is it green?" then another boy raised his hand and said "Why does he have to have that in his nose" apparently I was as clear as mud.... Gator just rolled his eyes.

Both Ry and Gator's talks went great. We of course had to tell the kids why Gator had stuff up his nose. I even made it to church a little early despite the 1/2 child. It was a good day!
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Saturday, February 26, 2011

First Cereal

Yesterday Daddy gave Munchie her first taste of rice baby cereal. She did really well and wanted more. She is holding on to her Munchie Munch name. Munch wanted to "help" daddy with the spoon. Hahaha... I wasn't in a hurry to start her on solids so she is a little older, maybe that is why she loves it so much.

MMMMMMMM! It only took her a few minutes to figure out if she opened her mouth like a little bird, someone would put something in it. I thought Daddy did a great job taking pictures, feeding baby, and protecting baby from siblings all at one time. And they say men have a hard time multitasking.

Even Ry got in on the action. The other two kids were fascinated with the cereal and asked to taste it. Gator thought it tasted like yuck. Ry ran to the bathroom to spit it in the toilet. I really didn't think it tasted that bad. So now begins the baby food dilemma. Ry loved baby food that was home made. She wanted to explore with all kinds of veggies and fruits. Gator on the other hand wanted nothing to do with baby food (store bought or home made) and wanted to go straight to hard core foods off people's plates. It seems like he liked things like salsa, beef jerky, pickles and frozen foods. It will be fun to see what she likes, blending Or just trying the good old jars of baby food from the store.
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The past couple of days....

The past couple of days haven't been that bad on oxygen as we have been learning how to manage it again. We have made it out of the house some too, which had it's learning curves but we are finding our groove again. Gator has gotten stuck many times and yells out " I AM STUUUUUUCK!" His face contorts because of the tender grips (little stickers) and his snotty nose is turning into crusty lip boogs. EEEWWW! We had a chat with his wonderful preschool teacher and she wants to keep him in school... Hurray! (I know I mentioned this a thousand times but Miss Joey is Awesome!!!) We talked about where and how to do his tank and to call if he is having an issue. Monday we are doing show and tell at preschool about his tubies so that those little curious kids know what is going on. I also chatted with his car pool and everyone is on board. Tomorrow we tackle church and the tank... I am just a little bit nervous of how we are going to get there without help, since Daddy goes for bishopric meetings in the morning. So I am on my own to get us all there dressed, on time and prepared because both of my littles have talks in primary tomorrow. It will be Gators first talk.. Dat ma. (stole that from you Cheltz, cause I love it and I love ya) They are speaking on being kind. I thought about writing individual talks for both kids, but then Gator is in Junior primary and Ry is in Senior. The other kids won't even know..Right? Next week they are going to bring us some of those baby tanks, B tanks, I believe. They are about the size of a hair spray can. My amazing momma and Gators Grandma made him a special back pack for this little tank. We think it will give him freedom to move around like a normal kiddo. It was specially designed to fit Gator so that when he goes places he can still be himself. We thought we would paint something cool on it like an Alligator. Gator is still thinking what he would like. I can't wait for the tanks to get here so we can see how it all works...

In other News-

Ry goes back on track on Monday. She can hardly wait. It is the pits to be off track during the winter months. You have to stay inside because of yucky weather. I can't wait for next year when we go traditional. That way her big breaks will be during warm months when she bored I can say. Go outside and get some fresh air.

Thursday, February 24, 2011

The Honey Moon is Ove-ah!

First off, lets start with our power pooper.

Not many believe me when I explain the extreme nature in which this little person can expel. She is by far my most explosive child, even though Gator had C-diff as many times as he did his little sister has trumped his blow-outs by a long shot. This is why she has had more baths in sinks at various locations than at home and I always pack a small bathing kit and extra clothes. Bleach is my new friend to get out those pesky yellow stains and we will now be trying a new diaper to see if that does the trick.

She is still happy even though she power packs each pass....


Guess what came to live with us again?


This guy!

For a while Gator has been showing signs of needing some intervention.

As I have said before, there is a fine line that I tread mentally. Am I overreacting? Do I have reason to back my feelings? Is it just the paranoid momma? I feel like things really need to be addressed if daddy is starting to wonder and ask similar questions. So we followed those feelings and called Cardiology. My message went something like this:

"We are seeing increased blue lips, fingers and toes, he is fatigued much of the day, he is falling asleep many times a day, his energy level is decreased, he has a hard time keeping his Sats in the happy zone... I am not sure what our next step is, We just wanted to run that past you and see what you thought. Please call back."

WOW!

The answer is.... He is getting bigger and he is going to grow out of the Glenn.. Ha! I forgot all that. I hadn't prepared mentally for it to happen this way... needing oxygen. I thought maybe we would go to a Dr. visit, we would chat about how he would need the surgery some time...

Then we would plan it.

We would have it.

The End....

I forgot that things happen differently for every kid. Now don't get me wrong, this is certainly not the end of the world. It just that it has it's complications. For instance, now we need to worry about how to do preschool, how to do church. I also need to plan for my 1/2 child the O's tank and hauling that around. I am not sleeping yet. I just checked on him and he was totally tangled in his tubes with it wrapped nicely around his little neck. I might not sleep well.

I had to have daddy come home on lunch to explain everything to him. For some reason daddy makes it clear to his three year old brain why he has to have this back. I think it may have been easier to just have it stay from when he was a baby then to try and bring it all back. I had a hair appointment planned for today. I needed a few supplies, things that I had to have to do the hair. So the beauty supply would be our first outing with all the new gear. I asked Gator in the car what he would say if people asked about his tubies. "Just to help my heart." It was a little rough to get going. At first I tried to have Ry carry the tank... Gator took off like he normally does and got yanked back. He started to cry. She was trying but it was heavy and she couldn't manage her little brother. Not a good start. So I got the tank, slung in over me, grabbed the diaper bag and put that on my shoulder, then got the baby out in her car seat (side note: she is getting better about being in that thing) and let Gator pull us into the store. All eyes are on us as I try to navigate the three of us plus Ry ahead, through the isles of the store to pick up everything I need. I still want one of those big yellow signs to put on my back that reads "WIDE LOAD" or some awesome orange flashing lights would be pretty dang cool. It brings back memories of doing this before. I was thrilled that he was so happy and that this isn't cramping HIS style. We get our needed supplies and walk over to another store to pick a treat. There is a little boy there who is the same age and is curious. He asked Gator why he needed that, pointing to his face/tubes. Gator said "Just for my Heart" and the little boy got it and was happy. His mom on the other hand was worried. "Sorry" she said "He is just wondering" I told her I know, it's totally fine. She said her son has a diabetic pump and people ask him all the time too. The boys were instant friends wanting the same treat. We managed to get everything we needed and head home. I gave myself enough time to get baby in car, get bags in car. Get son and 1/2 child O's in car and buckled, help Ry and answer her questions, get myself in car and get outta there in time for the appointment. It all ended more smoothly. He has had a few instances tonight when he started to cry or called out that he was stuck. We have to follow the tubes to find him, untangle him and show him how to move around with his tether. It will all work out. We just needed to get through the first day and it should be better from here on up. One really good thing. He gobbled his dinner because he had enough energy to eat. Then it seemed like he had a hollow leg the rest of the night. HA!

Tuesday, February 22, 2011

Important Information

After breakfast Gator turned to me and says "Mom you need to take care of this business" and then he hands me his syringes from his a.m. meds...

He also informed me what he would like to be for halloween... A Bam-Pirate (vampire) wiss blooood coming out of the eyes down to his knees...

Monday, February 21, 2011

View of the Zipper

I captured a rare photo of Gator without a shirt. He is always cold so we usually keep him dressed. Check out his zipper. His poor face is about as scarred as his chest. LIFE- I guess!
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Cousin Love


These two are joined at the hip. This is Ry's twinner cousin. Curly hair and fair skin too. It is hard to tell which is which from behind. They love each other sooooooo much. Sometimes Gator gets a little sad he isn't female and their age because they have such a great time together. On V-Day Grandma took the girls on a date. It was supposed to be a date just for GG but she insisted Ry come too. So they did a pedi/mani day and lunch. What a blast. Here are the Diva's in true form... Chill'in at the Salon. I love GG's pose of complete...... uuuuummmm... Cute!

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Sunday, February 20, 2011

Heart day


On Heart Day we decided to Heart Attack Daddy's office. It was so fun to plan. Thanks Dumi for planning and letting us get in on the action. Gator likes sticking up the hearts. Munchie watched from the car seat. Our finished product awesome. We love you daddy and we really appreciate how hard you work for us. That night we had heart shaped pizza and watched a movie together. Ahhhh I love us, I wish we could be other people so we could be with us.

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Visiting family


We had our family in town and we decided to take a trip to visit the Greats... It was really nice to be able to spend some time catching up. Grandpa had shoulder surgery and was still happy to see us all. I was terrified that Munchie would scream the entire three hours there and back but she did great.

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piggies


I love piggies!
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Four Month Well Check


Munchie had her Four Month Well check a couple of weeks ago and she is just growing like a weed. She is up to 16 lbs and 5 ozs. She is wearing 6-9month clothes and in the 90's in all her percentiles. She is tall and darling. As per my little tradition we got her ears pierced. She is sporting a little bling now.

Her brother can't keep his lips off her. Take a look at the expression on her face... A little like... ummm thanks!
















There is nothing as cute as neck meat and baldy spots on babies... Don't cha just wanna smooch that neck?
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Over done Yet?


Okay so I realize there have been a ton of photo's of the baby and less and less of the Gator and nearly nill of Ry, but to be completely honest, Munchie holds still and lets me take pictures of her. THE END!

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Gator Prime and Papa

Gator loves to dress up and he loves to be goofy with papa. So here is a picture of Goofy Gator and Papa!
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Music and Art


Hope kids did an event at BYU, we found out about the event an hour before we had to be there so we rushed to get there on time. It was really fun and worth the drive. Gator met up with two helpers that helped him with his art the entire night. He loved having the attention. His favorite parts about the evening was making paper airplanes and watching the ballarina's dance. Plus also, he liked sitting on Nathan's lap and talking about Monster Trucks. Thanks Hope Kids for all of the wonderful things you do.
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Growing


I certainly know how to grow'em when they don't have heart defects.. Munchie is getting so chubbers...
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Birthday Project


For my birthday I got a wonderful gift of a storage room. This room was set aside long ago and has been in use, but not functional. So now we have it finished and functional. The kids helped daddy to paint walls and put up dry wall. The kids also helped bring nails and drinks of water. They love helping us with projects and I love that they are learning these things at a young age. I am impressed with daddy who is patient enough to have some not-so-professional workers. Even Munchie got in on the action by cooing at us in the doorway.


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