Marsh woke up rough. His color was off and he was really puffy. He perked up after his a.m. meds but not much.

And then he had a well child check up with his pediatrician. She’s PHENOMENAL (as is the rest of the team in the Norwich office) and has cared for Marsh since birth.

But he was still afraid of them. And he had to have his flu shot. The risk/reward of the flu shot is gigantic. Yet I feel terrible for topping off a rough day with a poke (which required three adults to hold down 38 pounds of terrified Marsh). That tripped the trauma fuse from last week’s events and resulted with hysteric cryng so badly he was shaking and purple…

And he has been exhausted ever since. Here’s hoping for an early bedtime, good sleep, and a better tomorrow ❤❤❤❤❤❤

Marsh is ok. Really low energy. Perks up in the afternoon some. Appetite is back. Breathing freely. O2 sats are wonky in his left hand but good. Head is puffy. Still has peripheral swelling. New diuretic seems to be working🤞

Isaac and I took Marsh to school pond today. He walked maybe 20 feet. Our last trip there, he walked all the way to the pond and back to the van that was parked on the road.

He says to say he is “Fine.” Thus I am putting the phone down.

Tiny is a mouthy one..never stops talking.

And Tiny HATES Daisy. Not going well with the rest of the zoo population here either.

Marsh and Tiny are so uncannily similar… Little, adorable, and absolutely FEROCIOUS.

School now…

Marsh woke up tear free this a.m…slight finger pain and some peripheral swelling but at least it didn’t hurt as much as the days previous.

🤞It stays that way. Thank you, bumex.

And thank you for the good thoughts and prayers. Please keep them coming. I received the reports from Boston and they served to remind me how precarious his health status is.

Hugs, love, and so many thanks❤

Tiny the Small Cat has made Marsh smile more than he has in the past six months ❤

We had a super busy day yesterday with a trip to Hamilton, a visit with Nana (ran into Grandma Penny there what a surprise!) and then the kitten arrived.

And last week was something I just do not have the words to describe.

So we will stick to the here and now about how Marsh is:

Overall Marsh has much lower energy but a decent appetite. The cough is really wet but occasional. His oxygen sats seem to stick in the lower to mid 70s when awake but go as high as 85 when asleep.

He is exhausted today – like crying about the prospect of waking up. I can relate very well to that sentiment so I am letting him sleep. And then we work on the school piece after he is up and eats.

The new diuretic – Bumex – went in at 9:30 am (my gosh I hope it works 🤞 )

The pain in his fingers and toes hurts the most in the a.m. and p.m. so I am giving Tylenol and massage (in what looks like vain) to try to help.

We are waiting for Dr. Friedman and Super Smith to get back to me regarding another x-ray and follow up. (I don’t think the x-ray will happen until tomorrow since we got home too late Saturday to get to the pharmacy for the Bumex).

Thank you for the prayers and good thoughts. Please keep them coming.

And please forgive me for the rambling. Week three of running on little sleep and high adrenaline…

So many thanks, hugs, and love❤