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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.

Thursday, February 25, 2010

Finally feeling good...

Can I just say how hard this supposedly small sickness has wiped out Gator. His eating habits are still pretty limited. He still needs a really good nap in the day to feel like a happy person. Wait, is that me?
We are just thankful that he is doing well again and that Ry was completely unaffected by this illness.
I got Ry into the Lottery at two of the local Charter schools, I am glad to have done this as I learn that our political leaders are making some decisions I am not really thrilled with... I read on somebodies FB that we are now limited to Ghetto school, Home school, or Private school. LOL... If we are not drawn out in the lottery, this will be our choices too... BOOO... Two years ago at the elementary school it had 13 portables, and classrooms on the stage and they were shipping the 6th graders over to the junior high building. They are a little better with a new school taking some of the pressure off. Grrrrr... Here we come Kindergarten.
Good thing we have had an amazing pre-school time. It is a little crazy that Gator will be in preschool next year...WOW... A whole 2 hours 2 days a week to hang out...
Other than this, nothing new to report.

Thursday, February 18, 2010

Events

I am going to write in sequence to the events, although I should just say that this is going to be a looooonnng post. I had a great birthday palooza... I call it this because it keeps coming around again and again... It is like a birthday month instead of just one day. In fact today we celebrated at Chic-a-lay (what gator calls it) Nearly two weeks past the date... So thanks everyone... Then came Monster Trucks. The event of a lifetime for the Gator-man. I think he dreamt of sweet-crushing-car-nothings all night after that..... The funniest part was when it started he was so mesmerized he sat and watched and hardly breathed... He was in complete rapture. Then they started crunching and rev-ing those loud engines and he was in hog heaven. We spent the outrageous/well worth it price for the Grave Digger hat-cotton candy and he loves it. The wheels can be removed and he thinks that is pretty cool too. We loved that Monster Tracker comes from right here where we are from and cheered extra loud for it.... Monster Tracker even won one of the events... The motocross team was there and totally impressed us again with all those "sweet" moves.... When we talk about it, we always use our announcer/monster truck voice. Then Sunday we enjoyed a happy Valentines/Heart day... On Monday we went on a date to the Paul Cardall concert... Can I just say WOW! I loved all the performers, especially Paul and Peter B. They played one song "old school" and had everyone who had a phone/lighter, light up the hall like little stars... I loved it... Life is amazing... The only thing I worried about was Gator who was puking his guts out on Grandma..... That night he became increasingly sick. Tuesday we worked all day trying to get him well... He had a fever, chills, a strange rash, vomick and Dia-ruppass-of the Bum-pucker-ruttes. I am always amazed at how fragile he becomes... Wanting to be held all day and getting irritated and agitated one minute and then powering through it and playing on the floor the next minute... The best part is that he stayed potty trained even though he spent a great deal of time on the potty. We ran a few times and thought about which end to put over the potty? That night daddy had meeting and things he needed to do... I was just planning on taking it easy and holding down the forte. I new things weren't good when I took his temp and read 103.6... So off to the church, daddy and brother J. administered a blessing that comforted momma more so than Gator I am sure. Anytime my nerves are shot, and I have hit my "it's time to worry" point. I know is a fine balance at the Doctors office... I can either completely freak out and not be taken seriously, or I can become too docile and be taken as a momma who is heartless. Upon arriving at the insta-care (closest thing) I gave information so fast the secretary had to ask me many times what I had said. Then we waited in the chairs. I think it took ten-ish minutes but seems like hours... Once back, the nurse checked temp, then got the pulse ox out... Gator was about 73. The nurse looked confused...(I know it is mean, but I kinda like them to worry a little about him... It's the; lets take this momma seriousness that I crave) So she re-checks in another spot and he is 72... "Not great" I said "but not too far off of his base, remember I told ya he's a little heart baby"? You could almost see the relief on her face. "I have never seen anybody that low before!" The Doctor came in, took one look of his 'worrisome' rash and said she wanted to do a Strep test... I didn't know there is a rash associated with Strep.... Yes, there is and it looks just like the one he has. Few minutes later and RX for antibiotic and we were on our way to get meds and some Popsicles. Everyone just cross your fingers, toes, arms, and eyes that he doesn't get C-diff. Ry woke the next morning complaining of a sore throat so we made an appointment with the Ped... No problems with her... she is just the carrier. Now it has been recovery and disinfect at our house... His strength is not all the way back. His eyes still look tired and he takes two naps a day. It takes about six hours for most to start to feel better from Strep... It is taking so much longer for my little man. Days instead of hours...



Smooches
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Saturday, February 13, 2010

We HEART Taylor Andrews



Many moons ago, I worked as an instructor for a fabulous hair school. I really loved working with the students and doing the many projects and events that came with being an instructor. After having Ry, Daddy and I decided that he would work extra hard so that I could stay at home with our little ones. So after thinking long and hard I quit working for Taylor Andrews and began my career as a Stay-at-Home-Executive. Fast forward to when Gator was born. The strain of having this little man was sometimes more than I could handle. Luckily I have a great support system and an awesome support group, with mommies and daddies who understand everything. Fast forward even more to CHD awareness week. This week is CHD awareness week... I always post stats and interesting tid bits... But, here is the best part of our week... Visiting the schools... They help raise $ for the support group by doing something so simple... Wearing Jeans and color. You see.... all the students have a very strict dress code that they follow... Black, white, cream, gray, and tan. That is it..... So we come and offer them a chance to wear jeans and red and pink and they are pretty stoked... They just fork over the five dollars to do it every day.... So Thanks for doing this for us Guys.....We truly HEART you!!!! This is the Third year that they have let us come... WOW!! Isn't that awesome.
Taylor Andrews West Jordan!

Taylor Andrews Orem!
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Thursday, February 4, 2010

Following

I won an amazing HEART bracelet in behalf of Intermountain Healing Hearts, from Anastatia's Attic. A darling little shop that I always visit when we go window shopping at Gardner Village. It is so fun to see all the neat things in there. I buy Ry's tea set there every year for Christmas.
N-E-ways on the way down to pick it up, I have Gator in the back seat.... We are chatting smoothly about all the trucks out the window (darn road construction) Gator is totally enjoying it because he doesn't have to drive.
He tells me "uh oh; Mommy" I am thinking he peed his pants.
Nope, worse, he took a little wad of paper and shoved it up his nose...
Hummmm, we seem to have that happen a lot in our family.
I wasn't too worried until he also said he needed to go potty too...
GREAT!!!
Where do I pull off where I can easily get back onto this crazy road.
HOLD IT!!!!
I finally decided the best place will be the library on 78th... I think everyone decided today would be a fantastic day for the library because the parking lot was full and we had to park clear in the back...
I unbuckled, I grabbed, I ran....
We made it....
I looked around the bathroom while he was finishing his important business.... They didn't have one of those nifty diaper changing stations, no carpet, not even a counter by the sinks... So I took him out of the bathroom and lay him down on the carpet in the library entry... We quickly became a spectacle. I was laughing. I couldn't really help it. Sure enough I saw a wad of white paper. It was too far for my fingers to pinch it out, I recently trimmed off my nasty hair colored fingernails so I couldn't do the mommy-pinkie-finger-pick... I remembered the first aid kit in the trunk and thought it might have a pair of those handy long tweezers in it...
A really nice guy (also laughing) asked if I had attempted the BLOW... I had forgotten how effective the BLOW can be and gave it a shot before running out to the car. Sure enough one big blow and it came within pinch and wipe...
Whew!!!!
Won't be the last I am afraid... Ry's corn, raisin(s) and beads were just the start.
Go to Anastasia's Attic so you can win a cute bracelet too!!!! They give one away everyday in February and so your chances of winning one are really good. Plus they have the cutest little girlie things in there... I just want one of everything....

Wednesday, February 3, 2010

In the Potty Training news.

What it must mean to a little boy to see the Monster Trucks... After introducing the idea that we could go if he decided to keep his "big boys" dry and clean; he wants nothing but that reward. It was only fuelled by the Motocross event.... With Ry we bribed with the carousel at the mall. She loved it and would stay dry all week for a weekend ride. With weeks to go Gator is extremely determined. It brings me back to his "crap" attitude. Let me re-explain for those not familiar with my little term. A Crap attitude is such that the person does not give crap, or act crappy, No...... a Crap attitude is that, despite what others THINK might happen, they do not GIVE a CRAP. They will forge ahead, fight, and hope... Trying for the best; sure we might have set backs, but we will KEEP trying. That my friends...is a crap attitude.... one in which Gator has. I thought we would be similar to Ry in that, we would be day trained first and then start to work on nights... NOPE... He stays dry all night and doesn't need diapers/pull-ups anymore. I have put protection on him anyway.. J-I-C.... I don't want you to think that this is because I am a fantastic mom, it was all his idea. In fact, I am worried that at some point he might regress. We will just have to cross that bridge if we get there.

I wanted to post some darling pictures of his "big boy" clad bottom, but I am worried somebody would think that I was strange and take them and distort them... (Sicko's ruin everything). Plus once it is on the Internet it is here forever. So you will just have to believe me that it is cute!!!! I can't believe they actually fit his tiny person. He has a nice sag for breathablility, and it even says on the package, WEDGIE FREE!!!

So I can check this off my New Years resolutions... (I bet you think it is funny that was on my list)

Move onto conquering another.....

Tuesday, February 2, 2010

Turn this down...

We had earplugs in. I guess I forgot to turn off the volume... Wow it is loud.

Hope Kids

We went to Gravity Slashers Motocross with Hope Kids on Saturday. What an event.... It was amazing. I can't believe that guys can actually throw their bikes around like that. Whew! Gator was incredibly thrilled. Luis from Feld-hooked up Hope Kids, and amazing group- who hooked us up and here we are. Can I just say WOW!!!
Here he is trying to perform some of the jumps that the moto-cicles are doing.

Daddy and Ry loved it too...

He is spell bound.
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Monday, February 1, 2010

I failed!!! SIGH!!!!

Today Lola went to live with another family. She will be well taken care of and she will have a big (doggy) sister as well as two big (kids) sisters. I was so overwhelmed trying to potty train her and Gator at the same time. She got up often in the night so I am very tired.... But, most of all, I have no idea how to take care of a dog. She lasted longer than our kitten and she will be missed (slightly). I can say that I tried and that I know better now. I am a failure at being a dog owner, but I guess I can't be good at everything right?
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