Mimi and Ezra

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The Eagles were right… everything can change. We are living measuring Ezra’s days on good moments and scary moments. We will get calls from friends and family and they will ask “how’s Ezra?”… honestly my response has to be how he is doing in that minute- because things change very quickly. I’ve said it before, but it is an insane way to live. We will be going about our day- getting Daisy dressed- figuring out breakfast- coffee (!!)- get the feeding drip started- more coffee- start the laundry- and all of the sudden Ezra will start sputtering and coughing very lightly. Everything stops. Time seems to slow down to a crawl and speed up all at the same time. Panic and adrenaline kick in. WepathischestturnhimovercomeonEzracomeonEzra.areyouokaybuddy..areyouokay…his cough gets a little stronger…his breathing improves… our breathing improves……… dishes get unloaded from the dishwasher-clothes get switched to the dryer- more coffee…

This past week we brought Ezra down to the SMA clinic at Boston Children’s. I wouldn’t say it was a waste of time, but I don’t think we will be going back. The highlight was seeing Dr. Graham. We thanked him for checking in on us over the past few months and being an incredible resource for us and the surgery team when Ezra had his PEG put in. He is really quite an amazing doctor. We spent some time with the physical therapist who showed us a few exercises we can do with Ezra to help work his hips and knees. The nutritionist suggested slowing down Ezra’s drip to see if that helps him handle the feedings better. The orthopedic surgeon was focused on trying to help prevent scoliosis and suggested some awkward braces we could use down the line as he gets older which we did not spend a single second of energy even considering or worrying about. Dr. Darras, the neurologist and head of the SMA clinic confirmed that his belly breathing and pronounced chest/belly shaped belly are all signs of the disease progressing. Ezra’s eyeballs have started to quiver side to side. Dr. Darras said that was also part of the disease, although not that common with SMA babies, and it does not affect Ezra’s vision at all. He also said that no follow up was necessary with the SMA clinic. I can’t really blame him. There are so many families that need to be seen and limited slots. Both times we have gone to the clinic we have had a slot during the lunch break- they have basically fit us in, since all their regular spots were booked. Our child has a fatal disease with no cure… there really isn’t anything else for them to do.

On our drive home from Boston, Ezra began to get very fussy and started gagging in his car seat. I took him out and noticed that he was burning up. His little body was on fire and he was sputtering and gagging a lot like he was going to throw up. I started chest PT (patting his chest with my cupped hand) and patting his back. I told Ethan to drive more carefully than he ever had before. Ezra was laying on his side on my lap, I had him wrapped in a little blanket and I was taking the deep breaths that Ezra couldn’t.  He continued this way for the next hour in the car and then eventually threw up. Ethan was doing a very good job of getting us home safely.  I called Dr. Kammerer, our pediatrician (who has officially reached saint status) and he met us at our home. 103 degree temp and a double ear infection. Poor little guy. He is now back on antibiotics and seems to be doing a lot better… Lately when we have asked Daisy what she wants to be when she grows up, she says, “a superhero”. When we ask what kind of superhero, she wants to be, she says, “a regular kind” and her superpower will be, “to protect Dada, Mama and Ezra”. Have I mentioned that she is 3? Amazing. I believe that Dr. Kammerer is a superhero. He is really doing all he can to protect our little Ezra and we are beyond grateful for him.

Tomorrow Ezra is having the PEG tube swapped out with the Mic Key button. We will be heading down to Portland before the sun comes up…

I am so thankful for all the support that Ethan’s parents have shown us. They have been an invaluable part of Team Ezra and have been willing to watch Daisy at the drop of a hat. I can’t imagine how hard it would be to have Daisy with us at these doctor’s appointments and at the hospital. Daisy LOVES hanging out with her Mimi and Papa- it really makes all of this a lot easier to manage. Thank you- Chip and Bette Jane! We love you both.

xoxo

PS: I am very sorry if you now have In a New York Minute stuck in your head…

PPS: Thank you to Noa Levy for the super swanky outfit Ezra is wearing in the picture…