An update of some things from our week:
Rylie continues to do great. The oxygen supply company will be here on Monday to pick up all of Rylie's oxygen cylinders and concentrator. Not only are we excited that Rylie isn't needing O2, but we are also thrilled not to have to deal with the O2 supplier anymore. They have been less than satisfactory in their customer service. Among other mistakes, they were going to pick up our O2 equipment in Colorado! Give me a break.
Rylie is eating a little more, but no where near enough to stop the TPN. The doctors did stop the lipids (fats) in the hopes of encouraging her to eat more.
We met two older kids with Hurlers this week that were back for follow-up visits. It was encouraging to see how well they were doing. One had just graduated high school!
There is going to be a local radiothon fund raiser next week for the Twin Cities RMH. We were asked to do a prerecorded interview for sound bites they might use during the broadcast. We were happy to do it and hope they have a successful fund raiser. The RMH has been a wonderful home away from home. The necessities that they provide for the families here are such a relief and allow the families to focus on their child's needs. I can't imagine going through this from a hotel room.
We ventured out to a nearby cafe this morning for breakfast. With Clorox wipes in tow and mask securely in place we walked to the Birchwood Cafe, a great neighborhood cafe about a mile away from the RMH. Ryles did really well and soaked up all the activity at the cafe. It was nice to get out as a family for the first time.
Rylie wants to welcome her new baby cousin Emerson David into the world. She can't wait to meet him and neither can we (hopefully in three weeks?!).
Lyle
Followers
About Me
- Rylie Suzanna
- My favorite things are chips and salsa, swimming, and music. I also love being spoiled by my family. Since being diagnosed with Hurlers in November 2007, my parents have set up this blog to update friends and family on my treatment, as well as my latest tricks.
6 comments:
good news!
We will keeping bring you and Rylie before our King who has a passion to incline His ear towards our prayers.
Dave & Full Faith City Church
I'm so excited to hear about Rylie's great progress! Way to go, Rylie!
Hi guys. This has been quite a week. What a great way for you 3 to celebrate this morning! Fun to "get out", though we can attest to the many lovely weekend brunches served to the families staying at RMH by various dedicated volunteer groups the times we have been up there with you. Hope RMH has a sensationally successful radiothon up there! love and prayers, L&B
Rylie, Rylie! We're coming to see you SOON. Maybe we'll pack you in our suitcase and bring you back to Denver. Nah, you'll be coming home soon enough. Yay! Stay well. Love!
loved the story of the family outing to the cafe! pictures are beautiful and we hope you are home soon. continued love and prayers. The Stratmans
Ditto the folks. I'm glad you guys got a little fresh air and family time. Much love and prayer always.
jake jules ben
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