All smiles for our first outing this year
The last few weeks have been a bit rough around our house. First Andrew got sick with a nasty cold and then hope came down with a cold. At that point we had weaned her to the point of being off of the ventilator all day. Unfortunately the cold knocked the wind out of her sails and she needed to be back on the ventilator full time. She even got to the point of needing some extra oxygen to help her keep her oxygen levels up. Based on our past experience we were pretty well resigned to the fact that hope was likely going to wind up hospitalized because of this bug, however, her vent team at U of M was amazing! We kept in contact with them by phone and email and they advised us as to what to watch for and how to help Hope through this. Thankfully Hope DIDN'T need to be hospitalized! She is feeling much much better now and we are in the process of weaning her off of the vent again. This time it will be a much faster process than it was before because she has already been down that road (we are adding an hour each day rather than each week)
We hope that everyone had a nice Easter. Unfortunately daddy is sick again so he didn't get to go with Hope on her first outing of the year. As you all probably know we keep Hope on "winter lockdown" during cold and flu season. With her compromised respiratory system we just can take the chance of her catching something. This lockdown also includes not going to church with mommy and daddy on Sundays. Easter is the first time that Hope gets to get out and go to church again. She was all dressed up in her easter dress and very excited to see everyone. Everyone at church was very happy to see her! Since she wasn't on the ventilator she sat in mommy's lap for a few minutes but then since Aunt Emily was visiting she quickly snuggled in with her and took a nap through church.
After church Hope went to Grandma and Grandpa Robinson's house to have lunch. After lunch Hope dressed up in her bunny ears. Grandma Robinson had a bunny teeth sucker for Hope to dress up with too. The ears went over well..... The bunny teeth sucker? Not so much.
I haven't looked back through the old blog posts in a while now but I knew we had a post of Hope on her first Easter. I thought I'd post this picture just to show how far Hope has come. This was Hope's first Easter, two years ago...
Hi Hope!
ReplyDeleteMy name is Jenna and I came across your site. u are an amazing brave courageous fighter, and a bright sunshine. I was born with a rare life threatening disease.
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