Pages

Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Monday, September 29, 2014

Crazy selfies with the aunties

Apparently because my account is Gator's account, I get all his silly selfies.. And these included the aunties.. I nearly died laughing.. 
For your viewing pleasure...


















Hahahaha.. #1 rule is- Don't take life so seriously.. 



















Swagga

Riding in our swagga wagon, picking up some ice cream.. 
Word to my peeps!! 

Wednesday, September 24, 2014

yummy dinner

We still refer to May as the full-contact-eater

Mom!!!!


but I stayed clean







Ribbon cutting

I think I have mentioned before how grateful I am for all of those people who help our family make amazing memories. Alex was able to help cut the ribbon for the new outpatient building for Primary Children's hospital. I know that some have mentioned that this is a sort hard transition. But here are some very huge positives.... The outpatient building helps separate the sickies from the well kids coming for clinics, everything is new and modern, the jobs it will provide will help our community, the classrooms and meeting rooms are so much bigger and better apt for teaching (which means even better care in the long run), and it is clean and the lunch room looks like a fancy restaurant.... See so many amazing things... That is just skimming the surface of the building and it's awesomeness. Now, I am a creature of habit, so there will be some growing pains associated with going to the new building... but really... most of that is just walking a bit for Gator and he can always ride in a wagon or wheel chair.  
The ribbon cutting event was amazing and the careful planning for just our family was so sweet. We had a special helper the whole time. Thank you Miss Amber. Our kids were the only children at a very grown up event. That had me worried. I didn't want these important people to think I was a bad mom because my babies behavior was a reflection of my parenting skills. But everyone was so amazing. Jeff spoke because we all know how scared of the microphone I am. I wish that I could sound as eloquent and perfect as he does... I wish I could sing as well at the girl who wrote the song and performed it with the music therapy team. She is also a patient at PCH and did an amazing job. 
What was really cool to see was Jacobson construction. Those men and women who worked on making and crafting a building for healing and peace. And because they had huge LEGO guys... And we all know how Gator feels about LEGO!!!
I didn't take many photo's because I was busy managing the small people... 







Thursday, September 18, 2014

MayLee's Dr appointment

MayLee has a pulmonolgy appointment today. Usually it is Alex's cardiology day but they peaked at him on Monday after the ribbon cutting and decided we could skip this Thursday. More details on the ribbon cutting later.. 
May is doing beautiful. She is growing, is as smart as they come, and is so verbal. She has been such a good little NEHI patient. Not really much to report because not much has changed. She will continue to fluctuate in liter flow depending on her needs. She will also stay with her asthma action plan because even though this isn't asthma, there is still so little known that this plan is the best for treating it so far. Our amazing pediatrician will try and advocate for the Synigis injection although we don't know if she can get it again based on her age. I have been on high alert because of the new resparitory illness going around and doc U, reassured me that these precautions were actually wise. So that's it!!! I tried so hard to have her wear a mask while we were at the hospital but she wouldn't have it!! 



Friday, September 12, 2014

Miller million miles..

I was excited to see Jeff ride in another century, I was even more excited when I found out it is a benefit ride for Make A Wish.. And the best news of all is the kids were invited to do some fun things while we waited for him. 
this was a fun bike parade that Gator walked in... he loved it anyway.
They had a crazy awesome face painter

The kids tried the climbing wall
we even did chalk art... or posed with the fantastic art that was there.






The princess's even came. It was so funny because Eden saw Anna first and ran to hug her. Yelling her name with her arms open... when she was about two yards from her she spotted Elsa and ran right past her to hug Elsa instead. Poor  Anna was left wondering what that was all about.
we even gave bear hugs to the Jazz Bear


Jeff did fantastic on his ride... 
Thank you Larry H Miller and Make A Wish


















Very small update of Gator Boy

Yesterday was clinic... Everything checked out. He is doing better on his higher dose of Milrinone. Its the small miracles that make our day.
We were really excited to see Dr. Molina this visit because the gummy hearts..(and other parts) finally got here..They were well received. In fact, the heart is the actual size of a newborn heart that they perform surgeries on. So awesome!

He happened to mention in passing that he experienced a pinching sensation or squeezing feeling in his chest a couple of times. So they decided to have him wear a 48 hour halter monitor. Oh man, we were all caught off guard when he started to cry. Things just caught up to him I guess. It was more then he could manage. One more darn thing to carry around. One more silly reason to feel weird or wired in this case. We know it's short term. We know it helps to better understand what his body is doing... But, it was just the last straw on a boy who has been super brave. He pulled himself out of his sadness and hooked up.
We push the yellow button if he feels an episode...


Good thing Elizabeth was there with a special gift. A 49rs hat and shirt. He is proudly wearing today.
He is so excited to show his buddies the Hansens next door.

Eden is so funny, she wants to be in on all the business.. The other day May was throwing a royal fit. I was trying to distract her from what ever it was that was causing her such grief. So I said.. Let's play eensy weensy spider.. Did the little game and got her happy, crawling spiders up her arm.. Washing them out.. Eden parks herself right in front of me, offers up a foot and says "mom, let's play that game were the go to the store, you know, the one were they go to war-mart" I died laughing when I realized she wanted me to wiggle her toes for 'This little piggy', who goes to market. 
She was proud as punch, when she made me laugh that hard.