On my day off today, I tackled winter clothes sorting, costume shopping for Halloween and...created our very own Helping Hands Site (thanks to my near and dear friend Catherine). As if she doesn't have enough on her plate, she took time amidst chemo treatments for cancer to help me finally get the ball rolling.
Lotsa Helping Hands is a website that answers the most common question we hear "What can we do to help?" in a very 21st century sort of way.
All you need to do to join is an email address. From there you will go to our community page: Topel's Helping Hands
Request to join. After we "approve" you as a member, you will receive an email letting you know what else you need to do to finally be officially in our group!
For now, we have set up 3 times a week for someone to help with nebulizer treatments and therapy (about an hour and a half time committment) and a few meals. The calendar on our site tells you when we are in need of help and let's you select which need you can meet for us. The site is very cool in that it sends you reminder emails the week and day before, as well as the day of. That's something I need for every task in life! I'm sure we will add more needs like play dates for Colin during clinic appointments or rides if an appointment is in the afternoon and we won't be back in time for school pick-up. Please check our site for more details as we learn more about how beneficial this will be for our family.
I also wanted to give a quick update on Trinity. We have been more than blessed with yogurt scouts and shoppers alike, but much to our dismay she has been resisting even the more with every ounce of our pushing food on her. So we have decided to back off a bit and give her some breathing room. 2 weeks ago we increased her enzymes and have not seen any changes in weight. The next step will be a different acid reducing medication. After getting a lot of great perspecive from other CF parents on getting GI tubes at such a young age, some of them suggested appetite stimulating drugs as an alternative option they were offered. I will definetely be bringing that up when I talk to our dietician next.
So in the meantime, please pray for a healthy, ravenous appetite. That's what we need the most before we return to clinic on November 11th.