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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, January 31, 2013

Baby fuzz

Don't you just love baby fuzz. When they are so new and their skin is so softy. Their little shoulders and backs are covered in fuzz. For some reason the fuzz smells soooooo good and you just wanna smooch their little warm neck meat!!!
Yup!!!
 
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Crafters

Between nursing, cleaning up messes, and having fun; I forgot to snap a few pictures of the Borax heart crystals we made... so darling..
Here we are finger painting.
 
Gator almost got the idea... he mostly just liked being one with the paint! 
We all ended up *smushing the paint at the end, that was the most fun you see! 
Dirty *feen-nose as Munch kept saying... She had fun, although she is my "I sticky, wash it!!!" kid. 
Throw a little crepes into this lovely weekend and it was pretty much a success....  
We were glad daddy made it home to us safe and sound... The snow tried to keep him away but we finally got him home very early Monday morning...

*smushing- Brynn word for smashing + mushing
*Feen-nose- Munch word for fingers
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GAK

Project number 2=GAK
And the best thing about Gak is it makes a fluff sound!!! Completely thrilling, I tell ya! The louder and more realistic your Fluff sounds... The lauder everyone laughs... The best reason... The noise without the stink!!! 
 
You kind of have to make a face while pushing the gak in the cup for the noise....  
Ry used the two thumb method. Gator prefered the whole fist.
 
Preslee is a two finger kinda girl
 
This is our friend Denise...She came for a visit. She baby held.
 
AND.... ME!!! proof behind the camera that I do exsist... Still as CRA-ZAY as ever!!! 
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With daddy away... we're gonna play!!!

Daddy went for a special visit to see his brother in NC... So while he was a away my sister, AKA auntie Pres, came to help with my little group of munchkins. She also brought activities...(She is so cool)
Our first activity was making sugar crystal candy.

Any form of candy is exciting to my kids... Now we just have to wait till they grow...  
Mom was painting as well....
 
They are so colorful and tastes great... There was green apple, watermelon and orange to choose from!!! Yummy
 
Baby hung out most of the time. Her little piggy kept poking out of her darling booties... 
Now we wait for the treat! This might take a while! 
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Crooked booty update

So as you can see this little booty has been looking a little better... It is still kind of inflamed and the lesion is still rather raw... But her over all appearance looks better. It kind of looks like a little tail... Doc. M had us go get a blood work up... CBC, CRP, Labs, and such... All came back looking normal. We made an appointment with Neuro for the end of February and will have her evaluated finally. We will still need an MRI and CT, she has to be 6 weeks away from the RSV in order for us to go ahead with those tests.  
Speaking of RSV, I think that the snow helped push the yuck air away and this baby cleared right up. She didn't even need to go to suction clinic. I am so grateful it didn't effect her soooooo bad. I felt terrible that she got it despite all of my phobias about germs... We sent back the oxygen. DOne and DONE! 
She is so yummy!!! I just wanna eat her up! 
Big sis thinks she should all the time! 
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Tuesday, January 29, 2013

Actual account

As sweet as these sisters are, laying here together bonding... These things actually came out of my mouth...
"Let's just lay by the baby, not on the baby"
"Please don't stick your finger in her eye. No, her nose is not okay either"
"You might not want to taste that"

Wednesday, January 23, 2013

Ditched the oxygen today!

I kept the tender grips on because they are nasty to pull off and I still need to check her tonight. I think we beat this yuck!! I heard that it might snow tomorrow and push the inversion out of the air. Now it won't hurt to be outside. Now if we can just figure out about the TCS we will be set...

Tuesday, January 22, 2013

COLD

It has been super cold in our neck of the woods. The inversion is super yucky. One really neat thing is that bubbles will freeze when they land... We had to try it out.. Sure enough, we were able to freeze some bubbles...
 
They are mega fragile
 
But nifty to look at!
 
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Monday, January 21, 2013

Today's update

So the great news first..... Munchie is in the clear. She has a dimple but it moves freely and Dr. Mashkuri doesn't think it is tethered!!! We can just watch it to make sure it stays good!!! Hurray!!! More good, MayLee sounds great and is Satting well. We can begin to wean her off oxygen!!! My little fatty is gaining beautifully and is already 9.5 lbs... Doc was pretty disappointed that we didn't get labs and panels done. That is one reason she had us go to Primary Childrens. These little test would help us know a lot more. Like if baby was septic. Obviously she isn't because she is getting better, but I could tell my wonderful Doc (who is on top of these things) wasn't impressed! So she ordered the MRI for later this week. I will also set up a visit with Neuro with some amazing recommendations I think we will be in great hands. During the MRI visit we will do the labs and panels that the doc wants! She has been less snotty today and her cough sounds like that lingering junk mover. All of us seem to be on the mend. So much for our long weekend being full of fun and relaxation. I am going to have to make it up to the kids later!

Just one of the girls


If you can't beat them, join them... At least he's smiling!

Sunday, January 20, 2013

We will do what we do

Thursday afternoon May had her two week doctor appointment. It was early out day and I decided to take Gator and Munch along... We had lunch at Wendy's for fun and then headed over to the pediatricians office. We did our usual chit chat and May's PKU, then our doc came in and even checked Gators ears for me. We were almost done with our appointment as she asked me the usual thing, "do you have any other questions or concerns" I had compiled a mental list of a few things I mostly needed reassurance about.. The little newborn rash cluster on her ribs, a cough and runny nose, and a little spot on her bum. We did a RSV panel and then checked her bum. I have been in enough situations with Gator to know when there is a concern and not just some maternal reassurance. Doctor M is very thorough and doesn't make me wait for answers. She wanted an ultrasound of this little bump. We had to take a little trip over to the children's outpatient lab at the hospital she was born. She tested positive for RSV... I know cardio not neuro, so this type of ultrasound had me a little confused. I couldn't read the techs face either... Since my two other kiddos were with me I called daddy for some help. Ry went with Englands. I knew there was something up when I was asked how close Jeff was and that the doctors would be in to discuss the findings. We found out some information but not a whole lot. The first being... May has a congenital condition called tethered cord syndrome. She also had a sacral dimple and what was thought to be an abscess. We needed more information and were told to go to PCMC.... There is nothing more freighting than having another sick baby. We have been in this position before and know what to expect... Just not fun... And frustrated. We took the kids to Dumas's and daddy and I drove May up. During our ED visit we found that the worrisome abscess is actually called a vascular malformation... Then her saturation levels dipped and they decided to admit her... She only stayed 24 hours, during her stay they couldn't tell us more about her tethered cord until we do a MRI or CT because they couldn't give anesthesia to a baby who wasn't breathing well. One thing in our favor was the fact that she never has had a fever. So we know that her little body isn't trying to fight off infection... Another reason why we only had a quick hospital stay... We were discharged on oxygen, something we can totally manage and pulse ox spot testing... Done... We own a pulsoximeter so that is easy!!! And we make sure she stays hydrated and pooping and peeping! Then we follow up with ped tomorrow!!! All in all if this were another family I am sure it would surely devastate. I went to a wonderful adult session of stake conference last night, while daddy manned the troops. I felt relief as they spoke about the temple and families. I felt a teeny bit selfish because I go to the temple as a sanctuary and to get a "heavenly hug" I know we are there doing work for others, but the way I feel about life afterwards, and the answers I get to troubles is so rewarding. It is times like these in my life when I could be more than just a little stressed and frustrated. I could be angry... Anger doesn't change anything it isn't productive... This knowledge also let's me know that there is a Father in Heaven who will listen to me and help me... He has already done that by sending May after Alex... Alex will guide his little sister(s)... We are also having Eden evaluated because of a sacral dimple present in her bootie!!! We feel lucky actually... Because we have been sent the most amazing spirits, just in broken bodies... I hope I can be the kind of mother that will nurture and strengthen these little spirits! Sorry to get churchy, arghh, then again I am not!!!
I will try and update more, it's just been whirl wind-ish around the homestead!!!










On The Day You Were Born

 
 
 
 


On the day you were born:
A gallon of gas cost around $2.89
A loaf of bread cost $1.00 (from Dunfords on Mondays)
The president of the United States is Barack Obama
The president of our church is Thomas S. Monson
A gallon of milk costs $ 2.29
The weather was very cold and slightly snowy
Daddy is 33 years old
Mommy is 31 years old
Ry is 8 years old
Gator is 5 years old
Munchie is 2 years old
Some of our favorite gadgets are our Iphone 5 and our Mini Ipads.
One of our favorite family activities is going to a fun place to eat or on a "date" with the kids. This means we can go shopping or even just rent a movie and hang out together.
Some neat things about your daddy. He owns his very own business called Copper Canyon Design. He is the first counselor to Bishop Hansen and a Home teacher. He loves to ride his bike for fun.
Some neat things about your mommy... I do a little bit of hair out of our house. I was just released as the 10-11 year old primary teacher and a visiting teacher. I love to craft and read when I am not taking care of my little family.
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Visitors

 
 
 
 
 
 
 
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