Hannah was a few days overdue on her Cerezyme treatment. It was important to us to continue treatments because Hannah’s comfort is always our priority.
Our hospice coordinator had been working to get Hannah’s treatments done at home now that she has the broviac catheter (and doesn’t need an IV anymore).
We just assumed that an RN from our nursing agency would come to our house and do it.
But then I got a call from Dr. Bernstein, Hannah’s specialist, whose office we have been going to every 2 weeks for the past 16 months. He was sending our favorite nurse, the one who has done Hannah’s IV and taken care of her 90% of our visits, to our house on Friday to administer the Cerezyme herself.
How wonderful was that? We were so touched that their office cared so much about Hannah to send her out to us — on a work day! These infusions take 2 to 3 hours, and they were willing to let her come to us.
It was nice being able to sit and chat with her. We, along with Hannah’s regular nurse, were able to talk about what was going on, joke about ridiculous things, and just hang out.
Really meant so much to us. Now I don’t know if this was a one-time visit (and then our nursing agency would take over treatments), but I hope not. Whatever happens, I am just so grateful that she was able to come out for this.
Everyone loves Hannah and your family! I think her purpose here was to bring happiness and love to everyone she meets. Love also means heartache at times but that is what makes us more loving people. Xoxo
Good news Carrie.
That is great. I know that was a great relief especially after the concerns with the daily nurses. Hugs and prayers to you and your family.
You guys are always in my thoughts and prayers. I am so glad that Hannah’s doctor was able to send your favorite nurse.
Carrie-you and your family are surrounded with so much love! I feel so blessed to have met u and be a part of Hannahs bday. She is so loved but doesn’t realize how many lives she has touched as well. I put ur blog on my status last week and so many teachers @ school came to me to ask about Hannah and said they would be praying or their prayer groups would pray for Hannah Everyday I check Hannahs status. It just reminds me of what is really important in life-family and showing that love each and every day. Sending a big hug and many prayers for your wonderful family!
It’s those special moments of kindness that we don’t expect that sometimes mean the most to our hearts. Praying for the whole family.
I don’t get a chance to comment often but I wanted to let you know that I’ve had a candle burning for your family for the past few days. I’ve always felt a special bond with Hannah since she shares a birthday with my older son Leo. If there is even the tiniest thing I could do to help, let me know.
Love and hugs to you all, Carrie. I haven’t been to visit you in a long time, but I think you probably need support now more than ever. I just want you to know that I’m thinking of you every day.