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.

Wednesday, August 2, 2017

Philmont part 1

The Stake presidency and High councilman Brother Bates, all got invited to attend Philmont Scout Ranch for LDS week. This is us about ready to embark on our 11.5 car ride to Cimmaron, New Mexico.
We drove half way and got all our wiggles out in the hotel pool.
Road trip!!!

There were some extreme sized bugs. The first thing we noticed

These were our luxurious outdoor condos.

Pioneer/ cowboy party did not disappoint. We loved the ice cream part.

That darn Lip

The back story.....

One Beautiful afternoon, Alex was told that he needed to go out and get some fresh air and sunshine. He chose to go out and throw a baseball around. Specifically to throw the baseball up and catch it. And while this was a great activity, I didn't intend for him to use his face to catch the ball. (Side note- he also still had his braces on) so he injured his lip, it was swollen and painful. I assumed that it would heal quickly since that is usually the case with mouth injuries. I was reluctant to take him to be seen because I guess I just thought it would heal. Daddy thought maybe we should have it looked at and I just never got around to taking him in. Well, the darn thing never did heal and I chalked it up to the constant friction of his braces against the wound. Surely it would heal when his braces came off. It did a little, but never fully. Then it started to really become a problem and I thought man, Daddy is right, we need to get this addressed by a doctor. 

So then....
I took him to his pediatrician who prescribed an antibiotic thinking we need to address infection. Ten days later the problem still existed and we were no closer to healing it, in fact maybe it looked worse. With calls into his transplant team and then calls to the pediatrician, we called Dr. Bills his Ortho for an evaluation. Dr. Bills did an X-Ray looking for foreign matter like metal from his braces or tooth bits. But nothing was there. It was looking like a nasty cold sore. With a prescription for an anti viral and some Magic mouth, a concostion of Litacain, Maloxx and Bennadryl we thought we had the little stinker nailed. Those medications are tricky to obtain right before you head out of town. Which we were doing. Our awesome Pharmacy at Smith's Market place came to our rescue again. We headed off on our family trip armed with these things to take care of our little lip problem once and for all. Wishful thinking as it turned into more and more ugly sores, even spreading to his lower lip. We made an appointment to see Doc Brown (not to be confused with the Doc Brown from Back to the Future) this is Doctor Jared Brown with SouthWest Oral and Facial Surgery. We need some testing on this yucky calcified hematoma???? Doc Brown set up a time to finally have it removed. 
 A pie shaped piece from the bottom lip and an inch long and 1/4th inch wide and deep, from the top. He deserved a slurpee too suck on after all of that. 

A week after surgery and here is what his lips look like now.

Waiting somewhat impatiently for lab results....

June 14th

A day in the life of Asher Smasher Crasher Basher, is pretty much bubble baths and sunshine. (On all parts) 

June 12th

MayLee had her Nuero appointment on Asher's happy 2nd birthday!!!! 

Her appointment went great. Her doctor is impressed with some of her progress and we will continue to watch that her spine doesn't retether. We had a bit of a worry because she developed a big bump on her tailbone, but the doctor reassured us that it is most likely scar tissue and we will watch it as well. We did find out that she truly does need a sleep study. We need it to help us determine what we will be working with in the future. 

He is never impressed with being confined to the stroller, but there is just no other way to manage his crazy.

We did take him to get a donut after, which he proudly wore, the rest of the day.

June 11th

Sometimes you just need a spazz for a mom. 

June 10th

Lagoon passes this year have been sooooooo much fun. We even got to hit the park with Grandma, Papa Clawson, Arlington, Wells, and Auntie Pres 

June 8th

Ryleigh is becoming a beautiful pianist. She had a recital where she played " Hedgewigs theme" and "If the Savior Stood Beside me". She did an amazing job.