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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, April 29, 2013

Sneaky sneakiness

So May looks at you all cute, smiles and coos so you forget that she has her little tricky fingers by her face. If you look away for just two minutes... Or go to retrieve Munchie from the bathroom counter where she has gotten a silver gum wrapper sneezed out of her nose(I am not even sure how long that icky thing was up there).. My little May Bird will pull her canulas out of her tender grip. But.... With crappy Sats like this she needs it in her nose. So Munchie is up to the task of pushing it back. Then something similar plays out like this the whole day. We visit the doc again today.. Soooooo many doctors lately!









Saturday, April 27, 2013

MayLee's get well station

So now that we have had two tricky kids with health. I really really want to be able to help someone else out there. Here are some of my tricks... The best way to suck little boogies out of noses are these amazing electric nose suckers from Graco... But what Graco doesn't tell you is that it only works on mucus... So you will also need to grab some saline.. It can be the cheapest saline out there.. Drip a couple of drops in babies nose before sucking... We are not trying to drown baby so just a few drops will do.. Gravity usually takes care, you may not even have to squeeze the saline bottle. Then turn on the music, that's right folks it plays music. You only need to put it in the nose until the nostril seals it... Let's not suck brains out.. J/k also hold the other nostril closed so that everything from that side is sucked out... Do the other side!!! Then be sure to wash and clean all the appropriate parts of the sucker right away.. Germs I tell ya!!! I found this handy thing at Walmart for 20.00 dollars... If you haven't purchased the ear thermometer it is a life saver.. Baby temps one handed! The goo gone takes tender grips off without any ouchies. Be sure to wash the skin very good after with a warm wash clothe because it can really irritate babies skin and cause breakdown... That handy dandy otoscope I got from Dr. Mom.com... I haven't been to the ped in a long time for just ears cause I can treat at home with some drops and my kids are happy campers... If it is really bad I take them in. May has to have Albuteral treatments.. And the other stuff is her antibiotic, Tylenol, gripe water, and multivitamin... I also listen to her to see if she is crackly!! She sounds great today.. So there you have it!! Some of the things in my mom tool box.. I take my kids in to see our doctor a bunch still but, hopefully this way I can help them from home more. The very best thing we do is wash hands like crazy and wash HANDs...



Gator and Mommy date

Gator and I went to the motocross races and Rocky Mountain Raceway on our Pass of All Passes! So cool. When we got there we saw a table with some guys signing posters. It looked kind of short so we hopped in the line. Rocky the Raccoon came by as Gator was watching the racers... That crazy raccoon took out his Sharpie and signed Gators head. It completely took Gator by surprise and truthfully kinda freaked him out. Now I need to figure out what to take it off with. I think fingernail polish remover works... Or a orbital sander. Oh wait! Just joking.
 
One of the heats had racers as young as 7 years old... A-mazing. Gator really wants to try it. I am pretty sure we shouldn't do this sport. Not only did we see four or five crashes alone tonight. When I taught at the Hair school one of my male students used to race and fell off giving him a head injury that made it so he couldn't remember. I am pretty sure I don't want that to happen to Alex. So I told him all the cool people do the announcing. He could go to all the neat events and talk about it! Sweet! 
One heat raced ATV's.
 
Him
 
Us
 
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The lemonade stand

She has always wanted to do a stand. It didn't surprise me at all that she jumped on her bike and rode to homes and asked people to come to the stand. Thanks to her friends "cool" parents she got to do this. 
It was so sunny and lovely today... It was a perfect day for your stand Sassy pants! The stand brought in 14.00$ that is quite the haul for these kids...  It was like a 8 way split. Awesome!!!
 
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MayLee update

MayLee visited the pediatric dermatologist to have her hemangioma evaluated. I love good news and that is just what we got. The hemangioma is flat and mostly smooth. This means that there is really no need to do any intervention at this point. If is becomes ulcerated then we will need to put Vaseline on it and call them to find out if we need to cauterize it or put her on a medication. It is true that it is growing rapidly right now. It may continue to grow for a few more months but then it should stop. It will go through a resting period and then begin to shrink. The best part is that to the whole world it is hidden. No body can see it. I think that shields her little self esteem( or mommy's) from those curious questions. I going to post pictures but that is different in my eyes. So if you are offended by teeny baby bum, sorry. This last virus has been a rough one. A couple of days ago May started coughing again and really struggling to breath. We went to Alex's well check.. I will post his stats in just a second. The doctor was concerned that her coloring was off and that she needed oxygen again. Can I just say I love our pediatrician. She is ever cautious and helpful. She was concerned that May might have pertussis. I KNOW!! Can you believe it! This little girl has had it rough. We did an in office Albuteral treatment. I won't admit to the tiny nervous breakdown that may have occurred and required a self medication with a Dr. Pepper but it may have happened. We got MayLee on an antibiotic. Then today the office called to let me know that it was negative!!! Could have smooched the lady through the phone!!! Pertussis is a stupid word... (Gator is gonna kill me for saying a naughty word) it's okay stupid stupid stupid... There, that feels better... She will still need her MRI... It will be a crazy week when it rolls around. Gator has cardiology on the 13 th and May's MRI is scheduled for the 14th!!! Party at PCMC... Of course we will be posting results here...
Gator is getting..... Older??? He weighed in at 41 lbs 2 ozs (22%) and 41.7 inches tall (<1%) . That is just him I guess!! His sisters will tower over him!



The dentist

Our whole family visited the dentist.. The only one who had cavities was mommy because of having been sick during pregnancy. This was Eden's first official visit. She did so great!!! Look at how big she is getting so fast. Slow down babies:)



Happy 6th birthday

Gator had his big 6th birthday on Sunday! I can't believe our special heart boy has turned another year older. He is such a fun part of our lives.
 
He got this sweet new scooter from his sisters.
 
We came out to watch him try it out!
 
 
A race track is one awesome present!!!
 
birthday present explosion after math!!!
 
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Gator's Lego Party

Gator got to have a friend party this year. Every even birthday is a friend party... It took me weeks of pinning things on Pinterest, then actually making them to get ready for his party. 
It turned out so cute in the end.
 
I even made the cake. Gator has always had rad cakes... Boy cakes rock!!! 
This is pin the head on the Lego guy
 
 
I made this pinata and I made it nearly indestructible. Daddy even took a swing at the the darn thing and we ended up having the kids tear it apart because they kept hitting it and not breaking it open. I got told... Pinatas are only fun if you can break them open. Sorry buddy! My thought process when duct taping it was that there would be strong little BOYS trying to break it and I didn't want the first one to break it open and not give the other boys a chance to hit it. They did find a way to the goodies inside and that was all that mattered.
 
Gator loves chocolate cake and ice cream... That is wild to me. I don't really care for chocolate. He asked for a chocolate cake and strawberry ice cream. He loved his huge Lego cake! 
It was such a fun party.
 
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Friday, April 26, 2013

Daddy and the Salt Lake bike tour

We are so proud of our daddy! we love to cheer for him as he crosses the finish line. This year it was very rainy and cold. We bundled up and braved it for our favorite cyclist. This kicked off his first ride of the year.  
Even May and I were there... Someday when I have a little more free time I am gonna ride with him. Right now it just isn't going to work. Who would stay home with our kids while I rode? I can't even get out of bed early enough to go. It will get better when baby girl sleeps through the night. 
Hurray for the Finish Line!!!
 
There just isn't many people who cheer the cyclists on... So we cheer for everyone!!! 
He looks great in his stretchy pants!!!! The only thing that got cold were his toes... Good job Daddy!!! He finished in and 1 hour 18 minutes!!!
 
4:30 am just came so dang early!
 
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Conference weekend (back date April 5-7th)

For conference weekend we wanted to visit the "greats" in Idaho. As you know May got sick during our visit... Well she was probably sick before. I just posted about that and never posted about the good stuff.We are becoming the big family. Daddy and I were talking about that the other day. We have that large family that takes up a ton of room as guests and in restaurants. It is amazing to see our littles grow. It is becoming evident that we need space and so we decided to stay in a hotel. We booked one that had a pool. So fun!!! it also had this amazing breakfast! This was MayLee's first stay in a motel and Eden's second. Eden couldn't remember her first because she was just a teeny baby... It was so funny to have her talk about it and check out the beds... She loved that her bed was so close to mommy and daddy's bed.
 
May checked out the beds too! She was a huge fan.
 
The kids loved the pool... Gator loved the hot tub. The pool was too cold for his liking and he got purple really fast in that water.
 
My little fishy could have played in the pool all night long. 
Gator enjoyed conference while playing with cars...
 
Grandma great enjoyed it while snuggling baby!
 
During the morning and afternoon sessions, I took the little kids outside to get some energy out. Gator noticed that Munch's shoes where on the wrong feet. She didn't mind until she realized running is much more difficult to do when you don't have your equipment on correctly. She switched them around and was super speedy.
 
This baby girl is truly adored by her family... We all want her smiles and coos. She is just the sweetest, well tempered little girly. I think she likes us too.
 
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