Update in photos



Kate had Picture Day for her Club team. I snuck a shot with my phone camera. Heart racing over how old my baby is!!

Thursday was Liz's endoscopy, bravo chip placement and colonoscopy with biopsies.
She was in a good mood while she received IV fluids to treat her dehydration before her procedures.
She did great and her bleeding and pain afterwards was not as bad as some other times, so we
were super happy about that!

This weekend, an event was held locally for a fellow patient. Meg registered as a bone marrow
donor!! A few of Liz's hospital nurses were volunteering at the event and she liked seeing them
out in the real world. Halfway through our time there, her Infectious Disease doctor stopped by...in
his beach clothes and Liz thought it was so cool to see him like that. He thought she was pretty cool, too-
looking good and enjoying the day outside!

Mitchell IS a fighter, and so is his brother. Spencer and Mitch's mom has been a dear friend of the Ramsey
family since we were kids, and now we have a connection through the hospital. Liz likes being around the boys because
the three of them have many of the same doctors and treatments, and they all are so real and even silly about the yucky, hard things they go through. Pretty sure those three could get kicked out of the joint for being naughty if they were ever inpatient at the same time! : ) Both Mitchell and Spencer have Cystic Fibrosis and are amazing boys.....I wouldn't mind if one of them married a Noel girl ; ) To say that we love the Russo family is an understatement.

Liz and Mitchell with strong, fighting, inspiring Collin.
This afternoon, our amazing kids accompanied their moms (Nicolle, Julie and me) to a meeting with the CMO
of Miller Children's. Super proud of the kids, as they sat in a conference room and gave important
feedback and opinions about the new "Medical Village" our hospital is building.
I try so hard to teach Liz that we have to turn negatives into positives, and we must give back and serve whenever possible.
Our experiences of a difficult medical life is not what we would ever have chosen, but we can use this to make things better
for others. Today, we did that; today these kiddos did that!



{ And an update on our girl- She was weighed today, and she's lost two pounds. Boo.
She is sick with the same cold/virus that Kate had.....not good. Eleven days into being sick, I took Kate to the doctor yesterday and she was diagnosed with a sinus infection. Liz CANNOT have her bug turn into that. Hopefully her
prophylactic inhaled antibiotic will keep that from happening. The pediatrician hung her head and sighed at knowing Liz is sick, too. I reminded her that I can't bubble wrap Liz around her siblings!
Liz needs to have the Pneumovax vaccine on Monday- all specialties are freaking out about this. That vaccine is ordered in small amounts by doctor's offices because it doesn't have a long shelf life. Liz needs this so bad, and had to wait for two months after stopping IVIG to get it- there are three offices holding one for her just to make sure she gets it as soon as she can- which is Monday. She can't get it if she has a fever, so we pray she will be fever free.
Also next week is her GI appointment to talk about her weight and her prealbumin decline, along with discussing placing the G-Tube and taking her PICC line out. Blah.
Labs from last week show that her iron stores (different from her iron counts) are also low, and have in fact gotten lower, so
we are hoping giving her extra ferratin will help. We'll repeat that study in a few weeks too.}