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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, March 28, 2011

I did WHAAAT?

We had a very rough weekend. For some reason both the older kids needed reminding about behaving respectfully toward Mommy and Daddy. They also needed to be punished. After a punishment of being sent to his room Gator opened the door and asked if he could come out. He also promised that NOW HE WOULD BE A NICE BOY! I told him to stay there until I was ready to have him come out. He was so mad at me that he burst out of the door and yelled.

"YOU RUINED MY WHOLE LIFE"
Later we had a talk about forgiveness. Little children do it with ease. I wish it were the case always.

Sitting


Both toes in her jammies have holes. She likes it that way. I weighed myself and then weighed munchie, a whopping 18.3 lbs. Time to put away the 9 month clothes and start taking out the 12 month stuff...

Sunday, March 27, 2011

Because she is big

These sisters are gonna be great buds.



Ry is always off on playdates or at school, so it is hard to snap pictures of her darling-ness. I finally snagged this one!

How it all begins

Make A Wish is one of the most Magical things I have ever experienced. It ranks right up there with Christmas. We received this in the mail yesterday!
What is it you ask?


A very Fancy Key!


This is the Key to the wishing room. Only Wish Kids (well.... and staff too!) have a key to the wishing room.

Gator has a very special night coming up this week. He gets to declare his wish. Which is still undecided at this point. We have two very wonderful Granters. Miss Natasha, who happens to be a dear friend and Mr. Dwain, who we haven't met yet but are so excited to meet. At this point we know his wish will have something to do with vehicles or things that GO! We are not sure if that is enough for them to go on. He also said he would like to see Lightning McQueen in real life. Also not sure? We are confident that his Granters will help him figure it all out.

Steam Roller

Here is our girl in action.



HUUUMMM!



These are my two little gadget geeks. They love all the nifty things that come out. Ry knows more about apps/facetime at six, than I do at 30. It was bound to happen. Gator also finds all things gadgets cool. He can navigate the Ipad, Ipod, and Iphone with ease....



See those chompers. They are sharp! I think it is kinda early for those to be making an appearance, but apparently they can come in now. Munchie has been a little grouchy again. I think it is time for the top ones to push through... Poor Baby!



Thursday, March 24, 2011

Just a quick update

1. We have a date for Gator's cath.... April 15th... The cath is really important in the process of getting to surgery. There are a few things that are accomplished. The first thing they check is pulmonary pressure, then they check his coarch, also the leakage from the tricuspid, and they also like to take a peek at function(the ability to squeeze)
2. Gator is oxygen free again. This is so nice to be free of his leash. He is feeling much better, he still gets fatigued after playing hard but seems to just need a few minutes to recover. He has complained of headaches when he is really tired but I just give him a little puff and tell him to hold still for a minute.
3. Munch has cut her second chomper. Those two little teeth on the bottom can sure make it tricky to nurse. Good thing she loves food.
4. Munchie girl is also the steam rolling queen. It is time for us to put away the little toys that are choking hazards and put the gate back on the stairs.
5. Ry is growing again, it is hard to keep her clothed. Poor things legs are killing her.
6. Because of the said growth, Ry doesn't need her booster seat in the car. Nice, since I had three carseats in the back seat of my Honda. It was hard finding seats that would fit. Now she can sit without one. I can't wait till we get a mini van. I know I am a goober. Mini vans are cool to me all right!!!!
7. A very cool thing.... Gator is now a Wish child with Make A Wish. This program is so amazing, I am so thankful to all the Dr's and volunteers and everyone who is involved with it.

Friday, March 18, 2011

I give up!

I couldn't handle his shagginess. So Gator finally got a haircut. We were trying to grow it Justin Beiber style. EEEEWWWW. It was over his ears and poking out in back. Every time he laid down for a rest it was a rooster tail in back. So I finally just gave up and gave him a haircut. He looks sooooooo much better.
Munchie is eating solids now. She has tried: rice cereal, carrots, peaches, apple sauce, bananas, green beans, puff melty things, soda crackers, and everything else Gator decides he would like to share with her. Today it happened to be the fake cheese inside those Ritz crackers... GREAT!
We have a visual on the first tooth and the second is close behind it....
Gator said... "Catch a picture of this smooch, Mom"
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Sunday, March 13, 2011

Primarily Speaking

Here is the little music clip on Mormon Times. It was awesome to see Ry and Gator just a little on T.V. and for them to share their testimony about primary music and the Savior. You almost miss Gator but he is there so watch. Ry is right there in front.

Monday, March 7, 2011

Todays visit

I am glad to report some good findings today. When we got to PCMC they did an X-ray and then we went in for his routine test...EKG,Saturation, and blood pressure. Gator was not a fan of the stickers today and we had to wait until he was home to get into the bath to soak them off. He also hated the blood pressure and I ended up putting his nose in the corner for treating the poor nurse badly. Then I made him apologize to Kelli and he got bubbles from her and he was perfect the rest of the visit. I don't want him growing up thinking he can manipulate and be rude to others because he needs extra care. Nope, he will be kind and polite. Then we chatted with Dr. Su. Dr. Su thinks that Gator is looking really good his 32.2 lbs were impressive and he sounded great. So the mystery is why he is now needing oxygen. We think it all boils down to getting sick. It is doing a number on his little body. So we now have a couple goals. We would like to
1. Get him 100% well from his bug. This takes around six weeks to fully recover from.
2. Set up a Cath and sedated echo to get the ball rolling for surgery.
3. Try and ween him from his oxygen. YYYYAAAAAYYYYY
Dr Su thinks he is only O's dependant because of how hard it has been to fight off this last bug. He thinks we can drop the O's in a couple weeks. I am sure hoping.
That is our update. We are moving ahead with all the necessary things that will get us closer to having him all better.

Saturday, March 5, 2011

Still waiting...

AAAAHHHH, this illness is kicking Gator's booty. He is slowly getting better but he is still GROUCHY! Miss Ry's pink eye is all resolved. Munchie started to not feel good. I thought she was getting something since her siblings love her so hard, despite my best efforts to have them wash their hands and not kiss her while they aren't feeling well. Then, yesterday I noticed she has a little tooth poking through. So I am attributing her runny nose and fever to teething. Other than that she seems to be about as adorable as ever. She is my earliest teether. She is just five months today! Man that went lighting fast.

The older kids did a fun thing. They went over to the church today and were interviewed for the Mormon Times. It will air on Sunday after the Mo-Tab. I think some time in the near future. Ry was a little nervous, and froze when they passed her the mic. Gator wouldn't even look at them. He kept burying his face in my lap. It will be cute just the same. I have to see if I can find the clip to post on our blog, when all is said and done. They talked about primary music and how it makes them feel. One little guys said his favorite song was "Latter Day Prophets" when asked why he liked that song so much he said "Because it makes me feel like I will be a prophet someday!" I had a good laugh over that.

No other news till Monday!

Wednesday, March 2, 2011

It turned

So later Monday afternoon Gator started to turn from a happy man to an OSCAR; the grouch that is. I took his temp, called the Doc when it came up 102.6 and gave him some Tylenol. The Doctor couldn't see him until 4p.m. so we had to wait a while before we knew what was going on. At 2 I got everyone in the car, we ran to the bank and to the dollar store for some party supplies and then headed to the Doctor. He still had a temp in her office but his ears looked great so that ruled out infection. Dang, that is what I was banking on. His throat was a little red so we did a strep test and then a Flu test. No strep but the flu test came back positive. As a precaution because of his heart Doctor Mashkuri put Gator on Tamiflu. I went to our favorite pharmacy to get it filled. I am tired at this point after hauling around the tank, baby in her car seat and diaper bag. Plus the baby is crying because she needs a diaper change and then there is the grouch in the back seat. The RX tells me they can't fill it because they don't have it. They don't know where I can get it. UUUUUGGG. So I call up to PCMC. They can get it for me... We drive to Grandma and Grandpa's for a diaper change and then head to PCMC. It is 5:30 when we pull up. We go in and begin the wait. This type of Tamiflu is a compound so it is going to take a while to fill. We look at the train, watch T.V. and wait.... I go back to see if they are done and they tell me it isn't covered by my insurance. So they had to wait for me to see if I still wanted it filled. Yes.... they lowered the price for me..Angels.... 60.00$ is a bargain. Then I waited again for them to fill it. We ate at the Rainbow Cafe. Finally we got it and headed home. Making it to our house at 8:30 p.m. I was so glad to be home. I got everyone in bed and sleeping. Daddy was out of town doing cabinets so at least he wasn't home waiting around for us.

Yesterday we stayed home and rested alllllll day.

Today I got a call from the school to pick up Ry. She has a nice case of Pink eye. So we are going to grab some drops in a minute so she can go back to school tomorrow....

Gator's last fever was at 4 p.m. yesterday so I think he should be good by tomorrow...

Then we are back on a up path. We are going to see Dr. Su on Monday to check out his heart. Better to be safe...