I have been waiting for a low-picture day to be able to post this info. On October 19th, we are all participating in a charity 5k walk to benefit a non-profit organization called HopeKids. Brendan recently became a HopeKid and we have already grown to appreciate what they are about. We look forward to getting out and being able to do things that are made accessible for special kids. We connect with other families that share our struggle. It is a drop of sunshine in the gloom for so many families.
More info about the organization on the Hopekids.org website
We have our team together – “Li’l B’s Crew” and we are fundraising for Hopekids. We have been training for the walk and we are getting stuff together to make our own special shirts too! It doesn’t matter if you can only donate $1, please help Brendan’s team raise as much money as we can for HopeKids!
Click here to make a donation for Brendan’s team’s goal!
I am not a great salesman, but I hope you believe me when I say this is a very good cause. If you are interested in walking with us that day, please let me know asap!
On a regular blog note, Brendan has some big challenges coming up starting tonight. We saw his GI doctor today and got a whole new plan for his food intake. He currently gets about 40oz of his formula mix through his tube each day. That is not changing. But instead of his current plan of steady drip for 19hrs a day, he will be getting all of his food in 9hrs, divided in to nine 1hr segments. It is going to be a big challenge for his little digestive system, but it is a step in the right direction to getting him to eating meals at mealtime. I am nervous for him, so we are going to sleep and dream about a day with no vomiting tomorrow. He can do it! It is extra work for us, starting and stopping his pump all the time, but it is just a step along the path and should change again soon if he does well.
He is also starting some probiotics to help correct all the damage done to his “flora” with drugs. The doctor was happy with his weight and growth!
Trevor was a very good boy at the appointment too and ran some errands with me this afternoon. His new favorite word to say is “SCISSORS”. A two year old that loves scissors is just what I need!!
I really don’t have pictures from today, so I had to go to the iPad and see what Brendan has been up to with the camera. He’s got quite a gallery going.
Go Li’l B ‘s Crew! HopeKids is a wonderful organization, and I hope you reach your new goal. 🙂
Wow, what a big change for Brendan’s tummy! I hope the transition goes smoothly. It’s another big stepping stone along his path to being “tubeless Brendan”. Go, Brendan, go!
Those are some very artsy pictures Brendan took! Some are very psychodelic!! Is that still a word, or does it just make me sound very old?? 😉
Lots of love and hugs, and extra wishes for some more donations coming in for HopeKids,
Gramma xxxx
Whoops…it’s psycedelic! Although “psycho” almost seems more appropriate! 😉
Double whoops…I looked it up, and it’s psychedelic!! I think 3:26am is not a good time to post! 🙂
Good news on little B and the next challenge on his journey. I donated yesterday and would love to walk but finding new places that I have never driven to is a big challenge for me so I will pass on the walk. Sure wish it was closer to Tempe/Mesa/Chandler.
I am excited for you as I know it is a good cause.
The one photo – – – looking back at the “food truck”, and the tubes ………..
It will be a joyous day indeed when those things are only “looked back at”.
Brendan, you have some talent as a photographer 😉 🙂 Hope your next step along the path goes smoothly…just keep thinking “sitting at the table and eating”, and ” I can go in and out of the fort dozens of times and not have to be *untangled* ” 🙂 🙂 🙂
😮 ” psychedelic!! Is that still a word, or does it just make me sound very old?? ” 🙂 🙂 🙂 Three comforting facts:
1- It is, still a word 🙂
2- I, am very old 😉
3- Gramma, You are younger than I am 😮 🙂 😉 🙂 🙂 🙂
We would love to walk with you, but Ashley has a birthday party that afternoon…=)
Walk strong!
The pictures taken by Brendan made me dizzy but that is a state I am in lately, he is really great with your phone.
I tried many times and cannot get into your site to donate, it won’t be much but something if I can get in, I’ll keep trying.