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Happy 7 month birthday to our beautiful Ezra! Ethan and I were saying that we can’t believe it’s been 3 months since Ezra was diagnosed… it feels like much, much longer. Ezra was rebounding from his very scary episode (see Tough Day) really well… and then on Christmas day he came down with a 103 fever and was vomiting. Our amazing pediatrician came to our home (on Christmas Day, let me remind you!) and tested Ezra for both the flu and RSV. There is a tamaflu shortage in this area and Dr. K wanted to track some down for us- just in case. Thankfully , the tests for both came back negative and the fever responded to the tylenol. Ezra’s condition improved through the day.  We hated having to leave the Christmas Day festivities, and it was a good reminder of how quickly things can turn.

Each day since Christmas, Ezra has seemed a little bit better. This weekend has been especially great. He seems so happy and so very present with everything going on around him. This is our first winter in a long time with snow… I love all the anticipation that comes along with the promise of a good storm. Daisy and I have had a lot of fun playing in the snow and we have a great little sledding “hill” in our back yard. There was a moment yesterday when I was outside sledding by myself (as a way of tempting Daisy out of our warm home to come play with me). I was standing up at the top of the little slope looking at the back of my house. The snow was coming down, I had our little sled in my hands and I just started crying. I love our home and love that this winter playland is right in our backyard. But standing there gazing at the back of my house, I couldn’t help but notice the window to Ezra’s room. He was napping at the time, so the blinds were drawn and it made the window stand out from the other windows on the back of the house. I knew in a few moments that Daisy would be running outside to come and play- but I held on to this moment reflecting on the fact that my little boy would never be running outside to come and play in the snow. He will never get to experience the little thrill of gripping the sides of the sled as it barrels down towards the house with the cold in his face. And I hate that. It breaks my heart.

We were very lucky to have my sister come visit for a week. Bear Bear LOVES facilitating team building activities at the dinner table- usually around sharing some part of your day or things that bring you joy. Since my sister’s visit, at dinner time, Daisy has started asking us to share what we are grateful for. She always says, “I’ll start” and begins listing all the people in her life she is thankful for and then usually throws in a few odds and ends for good measure… like the snow, her baby dolls and edamame… or something like that. Tonight, after we made our rounds, I asked “Ezra, what are you grateful for”. Daisy began to talk in a little baby voice, like she was pretending to be Ezra. She said, “I’m thankful for mama’s milk, for Miles and Murphy (our dogs), Dada and Mama, and Daisy”. It was very cute. I am so grateful that Ezra has had a few really good days. He has been so smiley and giggly. I’ve discovered some new tickle spots and can really get him going. It is the best. Seriously- it’s the best sound in the world. I really can’t believe I thought we were going to lose him on December 18th. It is crazy how much better he is now.

We have some big appointments coming up. We go back to the SMA clinic at Boston Children’s on January 3rd. It will be very interesting to see what the doctor’s say, as they now have a baseline from our last visit. Dr. Graham has been such an incredible resource for us and has made himself very available to both our pediatrician and the surgery team in Portland. Ezra is going in on January 7th to have the PEG tube replaced with the button. This way, there will only be a small port on this belly and we can attach the tube when it’s time to feed him using the drip. Unfortunately, I have been told Ezra will need to be put under using general anesthesia again, which I’m not too happy about. Even though the whole procedure should take only about 5 minutes, it can be pretty tough to get the PEG out, so they like the babies to be under. I’ll be sure to post updates, as time allows.

It has been wonderful seeing so much family over the past week. Daisy has LOVED spending time with her cousins- she does a pretty good job of keeping up with them, and they are all so sweet to her. I also wanted to say how much we appreciate all of our family and friends who have made efforts to come and visit us. It is hard for us to get out- especially to travel to see people. It means so much that people are willing to travel all the way to Maine to spend time. Additionally- I really appreciate all the comments on the blog that people take the time to write. I read every single one- and I feel the love! I wish I had time to comment back, but please know that your encouragement and support means the world.

I wish you all a happy and healthy  New Year…

xoxo,
Emily