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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, January 24, 2012

The no shoes rule

I love it when people take off their shoes when they come in my house! The bad news is, not everyone will! I made a cute little sign that I thought would help get the message out!
Yeah, it's way too small.
So armed with my camera and some photo's of my shoe-less brood I am gonna make a "how can you miss this" sign... I am purely selfish about this because I just got new carpet and I don't want the vacuuming to be more than once a day! I don't mind once a day.... I used to have a big paper sign on the outside of the door, covering the doorbell. I took it down cause of the hub's OCD or in his case CDO(all the letters in alphabetical order).





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Monday, January 23, 2012

I'm too sassy for my hair, so sassy it hurts

Gator loves having options. He loves having control over some things and some things I totally let him have control over. His hair styles are one thing I will let him choose. He has six options which he has mostly named himself.

His most used and most known "Faux Hawk" this style done on him since he was a babe in the hospital.


This is the "Monster Truck" Style. He figures if he were driving a Monster Truck with his head out the window this is what his hair would look like.

This is the "Diber Do". I named this style clear back in high school. The "Diver Do" looks as though a scuba diver stepped right off a boat and the water pushed the front of his hair up like this.

This is the "Ubba Dubba". This style is half "Diver Do" and half "Bishop Hair"... He doesn't wear this style often. But he sure looks cute sporting it!

This is "Bishop Hair". Gator named this style after becoming tight friends with our next door neighbor and Bishop. Gator loves having chocolate milk and eating chips like sharks with his buddy. Our Bishop wear his hair like this, which is why Gator insist on wearing his hair like this each Sunday!


This is his last and newest look "Justin Beiber Hair". He loves to be called Justin and dance around. Now, he has a hair style to sport too. He thinks it looks like JB because there is no part and nothing sticks up... Funny Kid!
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Friday, January 20, 2012

Lady Troubles

Not in detail or anything, just trying to document a little here. When this is published in our little family book I will have it for record.... My female organs are sort of a mystery, or were a mystery for a while. See.... I have trouble getting a baby and keeping a baby. Ry and Gator are Cholmid babies and Munchie was just plain us(nothing short of a miracle). I have had a couple pretty nasty miscarriages. Four; with one set of twins.  I am glad when I am back into mommy mode because my heart can heal a little too. ANYWAY! I was having some issues about two weeks ago that landed me in the ER and not-to-my-surprise I had a cyst. I have had these before so nothing to worry about. But finally, I have a little diagnosis of why my body has never wanted to shed pounds that I try to diet and exercise off. Why I do struggle with the whole get the babe, keep the babe... PCOS! Something to hang my hat on and start researching to make my life easier. I go back in six weeks for another ultrasound to check the cyst and the little nodule that resides inside of that! Walllahhh! Wanna know something crazy? I totally bought a book from the library book sale on PCOS! Let the research begin!

Man, I feel more like myself now; then I did when I first got here!

And then...........

We got the letter back from Cardiology for Gator and school. It is always interesting to me to see things like procedures and surgeries listed like it was in this letter. The list seems so long on paper. Yet to see Gator boy, all totally worth it!  That day we also filled out the pre-screen to have Gator tested. We have a date to see the teachers! I was so fascinated by what I learned about my little son. He is very great at communication. He has an amazing vocabulary. He even has decent motor skills... But his ability to sit still, even for short amounts of time and to use fine motor skills, like holding a pencil, buttoning and zipping are still out of the question. He can follow a few instructions. He can't remember things well. He doesn't know any of his letters or numbers except "A" and he can't even tell you the letters in his name... We have been working on these things for two years! I feel like it takes ten times to teach him something new!  It is going to be work.... But we are going to do it! I was feeling very nervous about having him tested. Now I feel very blessed, because I know that I don't have the skills necessary in helping him be confident in school. I am grateful that there are teachers who will help him be a good student. Not the best student.... I do not require this of any of our children, but a student who works hard and does not act entitled. I was not the perfect student and so I cannot push that onto my children.  What will be hard is teaching them/him to work beyond the frustration both of us will be feeling. To keep trying even when it is hard. I still have to learn that.

 I don't need easy
I just need possible
-Soul Surfer

Tuesday, January 17, 2012

The sipper

The sipper isn't so bad!

She seems to manange her morning milk fine.








She has the most rock'in morning hair! I would like to know what this kid does in her sleep?
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Time in a bottle!

I can't believe how fast time seems to fly! With each week our little family slips into a routine and other crazy things that are happening and I forget to record those moments or funny things that go on. Dang it!

Life after the Monster Truck visit and show did not slow down as anticipated. Munchie had a doctor appointment that proved she is still growing. I was sort of hoping she would STOP and be my baby longer. She was in the 97% for her height and 61% for her weight... Tall little thing already wearing 24 month clothes at just 16 months. She was also weened from her beloved Ba Ba (bottle) She was by far my longest to get to keep it. As with the other two kids, we just take them all away cold turkey. DONE! It is by far easiest for me to have one miserable week than to cling.... then take away.... then cling... So goes for self feeding and potty training. Just go all the way for one nasty week, then it is over. I am glad we have never had a Binky lover or a thumb sucker. I just have snugglie blankie lovers and of course Bensi/Didi who has been safely tucked into the ceder chest. I would have let Gator have Bensi longer but Daddy gets a say too and we finally decided together that it was a good time to put him away.
Munchie also gets to go to nursery!!! We normally would have to wait till she was 18 months. But with my two callings and Daddy doing his bishopric thing it makes for a hard spot with her. We often had to pawn her off onto someone who could help. Yesterday was her first attempt and she loved it! I think she liked the toys the best.
Gator is doing great health wise... Have I mentioned that his appetite has done a 180? It was a constant battle to have him finish a meal. Now he is usually done first and asking for seconds. He also wants snacks throughout the day... always needing something in his face. He drives me nuts with the cups he leaves around the kitchen half full of drinks. He can also write his name all by himself now! This whole ordeal was almost more than I could take. But.... Papa took it upon himself to teach him and be patient with him. Something that I could not. He usually ended up in bed if I was helping him. He would tell me things that made me mad "I can't do it, I am just not smart enough, my brain doesn't work like that" Then he would cry, throw a royal fit and try to get out of it. He is smart enough he just didn't want to do it. Now I am finding his name written all over things. I started working with our awesome principal to get Gator ready for Kindergarten.... This has been more work than I thought! The first thing to happen was a paper that came home stating that the school needed to know of any up coming students. That was Gator, so I filled out the paper and before I sent it I made a little phone call that would alert them to Gator's medical needs. I am not sure how many other heart kids out there have IEP's VS 504 but this is our big debate. So then I had to call the school nurse who then had me call the district... I chatted with the gal from the district who wanted me to call and see if Gator could be tested in order to see if he was behind. I know that he would be extremely behind if he hadn't been in Miss Joey's wonderful preschool for the last two years. I also emailed Gator's wonderful Early interventionist and got some ideas from her... I love that gal. So at this point we are waiting for a packet that will help us decide if Gator should go to another preschool before kindergarten and then we will also know if we need to have an IEP or a 504(health plan) one thing I am requesting is an AED. I hope we can get one for our school. If not I have big plans for a fund raiser. I also heard about this cute program called monkeyinmychair.org from Daniel's mom. It is for kids with cancer and not heart babies. I plan on adapting it to fit our circumstances. I think this would be a wonderful way to keep Gator involved but not freak out his new little friends. We are also in the process of securing letters of recommendation from both his Ped and his Card. This has to be done per requisite of the district. I think it helps with actually getting a meeting with all the educators/health staff scheduled. I got a call this morning that his Ped's letter is done and now we wait on his Cardiologist. I may need to phone that in as I only emailed before. My suggestion for others is to start very early. Almost a year in advance if possible.
Ry has been doing her thing. Playing some Basket Ball and actually going to a Jazz game with Daddy. SHe made a basket during her game on Saturday. She has such a natural ability with anything she does. Her classes switched places. French is first and English second. She seems to be doing okay. I think she may be trying to cope with all that goes on in her life and sometimes has stomach aches. We have been trying to fix them but it is hard to be the big sister and deal with so much. I ask a lot of that little girl and she holds up pretty darn good most of the time.
We have today off and we have been doing laundry like crazy and we ran over and cleaned daddy's shop! We think we are going to hit the Car show tonight for FHE!!!! I am going to sit in all the Mini vans and drool... Someday I tell ya!

Tuesday, January 10, 2012

Smile Box Movie

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The KSL story done on Gator and Make A Wish Post

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13 pics»WEST JORDAN -- Alex Homer may have been born with only half a heart, but it is a heart "full of happy," according to the 4 year old.



Alex was born with hypoplastic left-heart syndrome, a rare congenital heart defect seen in only 1-4 of 10,000 live births. The dangerous condition led to four open-heart surgeries, one of which was a repeat because the first one had failed.



His life has been spent in the doctor's office, but his heart lies with the sights and sounds of a monster truck rally.



"We took him to his first monster truck rally when he was two and he just loved it," said Brynn Homer, Alex's mother. "It was so loud, but he loved the noise; he loved the smell. He loved every minute of it."



So much so that he named his pet frog "Monster Truck" and has dressed up in the past as a monster truck driver on Halloween. He will wear a monster truck T-shirt until it cannot be worn anymore; his mom said he says he is thankful for "monster trucks and family."



Such is Alex's love of monster trucks that when Brynn Homer got the phone call from the Make-A-Wish Foundation of Utah offering Alex a visit from a real truck, she could not contain her excitement.



"I screamed into the phone," she said. "I knew this would mean the world to a little boy who has had a rough life. As his mommy you get so humbled by people and the things they are willing to do to make kids they don't even know happy. It's those happy memories I hope he remembers instead of being sick."



This type of joy and selflessness that people offer to our family, there are no words to describe how wonderful, how kind it is.

–Brynn Homer

The Make-A-Wish foundation had already granted Alex his true wish: he got to visit Disneyworld in August 2011. The monster truck visit was what the foundation calls a "wish enhancement": an opportunity to participate in an additional activity or event, which is often provided by members of the community.



"When a child is referred to us, we invite them back to these activities for five years after their wish is granted," said Christine McAttee, the foundation spokeswoman. "We keep track of kids' interests, and it's always a surprise when they go and say we have something extra. It's fun and exciting for us to be able to give that child something they're interested in."



"Families just want another day with their child," she continued. "They just want to put a smile on their kids faces, whether they wish for Disneyworld or a room full of Legos. They just want to forget about illness and be a kid for a day; that's what wishing does for these kids."

The wonderful KSL Story:
When the opportunity arose for a child to be visited by a monster truck and attend a rally, Alex arose as the perfect candidate.
His reaction did not disappoint. He "freaked out" when he heard of the visit, according to his mother. Not quite able to grasp how many days were left until the big visit, he repeatedly asked, "how many sleeps?"
After inviting his preschool class to attend, he often asked strangers on the street if they wanted to see the monster truck that would be visiting his house.
"Even though he has a broken heart, it's pretty full of love and excitement," Homer said.
That excitement spilled over when a monster truck called Bigfoot arrived; clapping, squealing and jumping up an down, he finally spilled into his seat in a rush of emotion, beyond words, to wait for the driver, Larry. Starstruck, he shook hands with Larry and rushed back to hug his mom, saying, "thank you."
Neighbors came outside to see what the ruckus was. After an impromptu block party with plenty of Mrs. Field's cookie cake and during which Alex got to sit in both Bigfoot and atop a police motorcycle, he lay on the floor, looking at pictures of himself with the truck.
"My heart is just so full of happy," he said.
As was the heart of Brynn Homer.
She said people do not realize that when Alex is struggling, it is this type of experience he will remember, instead of thinking about the pain he is in. He will remember it, and he will learn from it.

"People are so goodhearted and I think for him to see that take place, that goodheartedness, is just so amazing," Homer said. "This type of joy and selflessness that people offer to our family, there are no words to describe how wonderful, how kind it is."

"As a parent, you want to give your child everything," she continued. "You want to fix everything your kid might experience that would hurt them."

"This was one thing I just couldn't give him, and they gave it to him … they mean the world to me."

Email: sgrimes@ksl.com


The Awesome Post By Christine:
Thursday, January 5, 2012

Bigfoot Monster Truck Visits Wish Kid Alex
When Checkered Flag Productions called and said they wanted to take a monster truck to a wish kid's house I didn’t have to think twice, I knew the perfect kid for this enhancement. Alex is a 4-year-old boy who was born with a diagnosis of hypoplastic left heart syndrome but you would never guess this as you watch him run around! When Alex was referred to us his mother mentioned how much Alex loved cars and especially that he liked Monster Truck Shows; I made sure to add this info to our database. Alex has a cute little personality and showed up to our Halloween Trick or Treat dressed as a “monster truck driber,” as he says it. Anyone who knows him knows that he goes by "Gator" so his Halloween costume fit him perfectly!
When I called his mother to see if they would like a monster truck to come to their home she screamed with excitement; I knew I had contacted the right family. As the date got closer Alex continued to ask his mom how many more “sleeps” until the truck would arrive. This morning when Alex got up and went to his preschool class, he continued to ask how many hours till the truck would be there? As I drove as fast as I could to get to his house on time, thinking I was going to be late, I pulled up to a police car, 2 motorcycle policemen, two tow trucks with banged up cars on them and I thought I had come across an accident that was being cleaned up. As I looked ahead a little I saw BIGFOOT on a trailer up ahead of the police and two trucks and realized I had come upon the caravan on the way to see Alex.
As we arrived in his neighborhood the police lights and sirens came on to let Alex know we were almost there. Neighbors that were along the way came out of their homes wondering what in the world was happening in their small neighborhood!
Alex lives in a circle so the trucks all stopped on the road in front of the circle and the party began. Mrs. Fields from Southtowne Mall donated a large sheet cookie decorated with a monster truck on it. Alex’s garage had a big banner thanking Checkered Flag Productions and the Make-A-Wish Foundation, the policemen handed out sticker badges to all the children and anyone and everyone got their picture taken with BIGFOOT.
Alex was in awe of the whole situation; he met BIGFOOT's driver Larry and they because buddies. He let Larry pick him right up and put him on the trailer, this little guy even fit in the wheel of the truck so he had his picture taken there and then jumped on one of the police motorcycles and honked the horn and ran the lights.The kids in the neighborhood wrote their names and drew pictures on the cars that BIGFOOT will smash tomorrow night at the Monster Truck Show at the Maverick Center. Alex and his family were also given tickets to attend this show and watch BIGFOOT crush the cars.
Alex likes to give "knuckles" and then "blow it up." He loved doing this with all the special people that helped make this day possible.

written by Christine McAtee, Director of Community Outreach

I don't know why the pictures didn't come with but I almost have the movie finished... Stay Tuned!

Better than Christmas presents

We knew about this event before Christmas. Even though presents are awesome, Gator could not wait until Big Foot the Monster Truck would come to our house. He would tell strangers on the street that a monster truck was going to come and would they like to come and see it too? He did not understand how far away or close the date was so we had to count down in sleeps. For some reason kids get that. Just..... more sleeps until the day! We had also been on the phone with Debbie (a total sweet heart) at Checkered Flag productions. She was totally getting us pumped and excited. She also let us know that CFP had set aside some tickets for our family for the Friday night show and that we got to sit very close!!!! It was going to be awesome. To help Gator understand who was coming and what to expect he spent many hours watching Youtube and looking at the Checkered Flag Productions Website. I read the stories to him but he loved every minute of it. The night before he had a very rough time falling asleep. He was way too excited. Even that morning as we were getting ready for school he asked me a million times how many more hours? Was that a long time? We decided it would be fun to invite his preschool to join us and also we called Christine at Make-A-Wish to see if she wanted to come too! It was such a beautiful day. I had been so worried that it would be freezing and there would be tons of snow but it all held out perfectly and we had the best weather. The kids played while we chatted.
 Gator ran to the end of the circle with Grandma to see if they were coming. Sure enough he saw the convoy and ran shrieking "here it comes".... He huffed and puffed up next to me and squealed!!!! Then we heard the sirens from the escort!!!
The kids were so happy to see two motorcycle officers, then a crush car, then BIG FOOT, then another crush car.... All hauled in by Wasatch Towing. (Thanks guys.) WT had to do all the hard work, they had come the day before to map the route  to make sure they were going to get into our neighborhood. Then they had one of the best drivers drive Big Foot in. BIG FOOT was sooooo good looking. This was the all black truck! I think Gator was star struck cause all he could do was have a silly grin on his face. He met Larry and Chris. Both drivers of Big Foot. Gator also met the police officers that helped make this happen, the guys at Wasatch Towing company, and Mr. Steven Kun from the Maverik Center. Gator got to sit inside Big Foot and all the kids wrote their names on the Crush Car that would be smashed at the show the next night.  We had our friends at Mrs Fields in the South Town Mall make us a yummy cookie cake, which they gave to us at no cost. We Love you Howey's! Cookies make everything better! When it was time for everyone to leave, Gator stood on the side walk to watch them pull away and wave. We walked back to the house and Gator grabbed his autographed picture of Big Foot and flopped on his belly to look at it on the floor. I was cleaning up a bit and he looked up at me and said. "mom, my heart is just so full of happy"!
The next day we got to go to the show. Gator invited both Papas to come with us. Gator wanted to wear his monster truck shirt! It is getting a bit small, but I thought, what the heck! We were seated on the second row! Gator was in heaven. I wished I would have asked more questions about the tickets because later Larry told us we had been invited to the pit party. Dang it! In my excitement and Gator's too, I completely forgot that was happening. In my defense, it wasn't printed on the tickets, and we all know I have 'Some-Timers'.
The Show was Awesome, we cheered  loudest for Big Foot. Monster Trakker was there too! He lives right in our very town and so we had to cheer just a little for him and his driver Ron. When the show was over and we were all full of nachos, popcorn and slushies we went up to have all the drivers sign their autographs. We forgot to get something to have them sign so that almost too small shirt came in handy and they each took a turn signing Gator's shirt.
It has been what Gator calls his "special days"! I am sure he will never ever forget it!

Friday, January 6, 2012

The Leanardo

The kids got tickets to The Leonardo museum for Christmas. I thought it would be similar to the children's museum but it was geared to a little bit older kids. Gator still got a kick out of it.

We spent a bunch of time at this station. We really need to go back because we needed more time to explore!

Ry and Gracie stitched these into a big map of places they would like to visit. For Grace, a coconut and umbrella for Hawaii. For Ry, Mickey in Cali. She loves herself some Disney land.



Papa and Gram watched Munch




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Not without injury

Munchie finally learned how to manage stairs. Unfortunately, not without injury!

This kinda looks like the third eye. It made me feel a little better when it was explained that even though it was big and out there, it was better than if it was dented in.

It sure looked bad
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Family Pictures 2011

We got our family pictures done by the amazing Amanda Bishop!!! I took my camera and shot a few, I can't wait to get some made up for the frames on our walls.
Munchie is Daddies girl. She loves it when he comes home from work, running to the door when she hears the garage door go up!

He likes her too.

My Gator boy is sure a ham for the camera

She is such a funny girl

My Ry is darling

We hit Crown Burger after and Munch had a few fries with her Fry Sauce. I hear Fry sauce is a Utah thing... That is a same, it is down right Delicious!

The fry was just the tool to get the sauce to her mouth...

Soon she gave up and decided to go at it full!

Auntie LOVES it too... She is pretending to drink it down. In the background Gracie is looking a little frightened at the sight of her sauce chugging momma!
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