Oley, Here We Come!

We're headed to the Oley conference which is in St Pete's, FL this year. And depending on how Bo travels, we plan to be in A2 for the 4th weekend. It's going to be extremely hot, and Bo gets overheated very easily, so I'm a bit nervous. But we buzzed his hair off (these show of his now defunct Bruce Lee mullet), and it seems to help. The heatwave here has lightened up a bit and instead of unbearable, it's just a little hot at midday.

Medically, Bo remains stable (knock wood). His GI was very pleased and said he's just on maintenance right now. The nephrologist said as much in March. Bo will see both again in October. His feeding therapist is making very nice progress with his toothbrushing goals, and we look forward to more Feldenkrais lessons in July at a Childs'pace workshop (if not sooner with his teacher). His gross motor skills are still lagging, but everything else seems good!

On the home front, the garage is now standing tall- we will re-roof it next year. The window replacement project was itself replaced with a window trim/sill rehab project (much more affordable, thank goodness, and justified with an energy audit). And we've added an insulation project to the tree trimming project for this fall. Yikes. But considering we did nothing to the house these last 2 years while we were so focused on Bo's health, I guess it's time to pay the piper (the home maintenance piper). Sigh.

We celebrated Father's Day Eve at the 4 diamond restaurant in town (yum!) and drove to A2 on the fly to spend time with both our fathers. Can't wait to see Jose's brother and his partner in Florida! And finally meet all our cyberfriends in person!!

youtube addict

youtube addiction from Kinn-Ming Chan de Velarde on Vimeo.

Dog Study (mucosal transplant) and, Pig (stomach and intestine)

Correcting myself, Stelzner's group recently published a paper where dog's were the animal model for curing something like MID (problems with the mucosa), "Intestinal Stem Cell Organoid Transplantation Generates Neomucosa in Dogs." They had cured rats with malabsorption with this experimental design several years ago, and just published this dog study. The next step might be pigs, unless they jumped right into people, which they can now do, since Lgr5 was finally identified as the human intestinal stem cell (these other animal models have well established intestinal stem cell population).

The pig study was a triumph for group effort from Mass Gen and UCLA, "Tissue-Engineered Small Intestine and Stomach Form from Autologous Tissue in a Preclinical Large Animal Model." Basically, mashed up intestinal cells, schmeared this paste onto a bioscaffold they stuck into the pigs' belly cavity, and ta-da! Stomach and intestines formed, including muscle and nerve structure.

Race Car Crash

Race Car Crash from Kinn-Ming Chan de Velarde on Vimeo.

Is this thing on? The movie

Is this thing on? The movie! from Kinn-Ming Chan de Velarde on Vimeo.

Baby Reloaded, The Movie

Baby Reloaded, the movie from Kinn-Ming Chan de Velarde on Vimeo.

Chippie Chan!

Chippie Chan from Kinn-Ming Chan de Velarde on Vimeo.

Bo and Sam!

This is a pic from our visit with the O'Connors in Chicago a few weeks ago. We had a great long weekend in Chicago with Tio Ren and Auntie Jennie, and the O'Connors! We spent Saturday morning at the Museum of Science and Industry. Most of it in the Great Train Exhibit. We had scheduled this weekend to go to Chicago in the hopes of crashing Digestive Disease Week at McCormick Place, but I wasn't registered, and our luck getting a $25 guest pass ran out with our only possible host, the Dutch grad student sent to present their MID genetics work. While I'm grateful that she was gracious enough to answer my email, my emotions cycled from bummed, to angry, to dismissive, back to mad. Oh well. We had a great time catching up, sharing tips and tricks for care, playing with toy trains, looking at toy trains, and impersonating trains. As a famous person once wrote, "trains=toddler crack."

Is this thing on?

Birthday party #1 with MIL on birthday eve. Party #2 an impromptu gathering with our favorite family on the Big Day. And gearing up for party #3 with my family Saturday. Who knows, I may even drag my unwitting family to church, to top it all off. Muah hahaha!

Also: current updates in research include from the last 6 months
-identifying the true human intestinal stem cell (Lgr5)
-regenerated stomach and small intestine from a pigs own cells
-combo stem cell and gene therapy cured a HUMAN genetic disease in vitro

God is good, all the time. All the time, God is good.
Thank you for answering my prayers, stoking the fire of both my hope and my faith, and giving me the strength to keep living and loving the miracles of this life. I continue to believe that a solution for Bo may be in sight during our lives. And that we will continue to celebrate each day we have together, regardless of our proximity to that monumental discovery.

Happy 2nd Birthday!

I am too paranoid and superstitious at this point in Bo's life to make a big deal about his birthday, until it's over. It was a relief to me that his baptism was a month after his birthday last year, so we could celebrate it then. This year, too, I expect to have his second birthday sometime in July. Pictures from his birthday party last year, and only one month old.