Mattie woke up in a "grumpy" mood. This is his own word to describe how he was feeling for most of today. For some reason he thought he had to go back to the hospital this morning for his MRI scan. I told him that wasn't the case, and that we were headed to have a nice day doing something he wanted to do. I had chatted with him yesterday about what he wanted to do today. We came up with the plan of going to the B&O Railroad Museum in Baltimore, and then to have an early dinner at the inner harbor. I figured being by the water and looking at boats (something Mattie wants to have, in fact, if you ask Mattie what he is saving money in his piggy bank for he will most likely tell you to buy a motor boat, and he doesn't mean a toy one!) would be therapeutic for all of us.
So we all loaded in the car and headed to Baltimore. We ran into traffic and landed up stuck on the road for a while. It was getting to the point where we were wondering if this road trip was a mistake. But things eventually opened up on the road. Mattie continued his grumpiness for most of the museum trip, but we accepted and understood his mood and tried to give him his space and followed his cues. But to say these moments are frustrating and difficult to deal with would but an understatement. According to the B&O Railroad Museum website, "the Museum possesses the oldest, most historic and most comprehensive American railroad collections in the world. Dating from the beginning of American railroading, the collection contains locomotives and rolling stock, historic buildings, and small objects that document the impact of the Baltimore & Ohio Railroad (B&O) on the growth and development of early railroading and cover almost every aspect of an industry that left a permanent mark on the folklore and culture of America."
Today was "steam day" at the Museum and they had a special steam train ride taking place. The steam engine was called, "St. Elizabeth,"named after St. Elizabeth's hospital in DC. Mattie seemed to perk up by seeing Elizabeth and thought the ride was neat as well. You can see a picture of us in front of Elizabeth below.
Pop Pop, Grammie, Mattie, Vicki, and Peter
Mattie got aboard many of the trains at the museum and we all enjoyed the opportunity to experience a by gone era. Of course no trip is complete to a museum without going to the museum store. Mattie picked out a few things and then we were off to Baltimore's Inner Harbor. We ate at a restaurant right on the water, and as we sat outside, we enjoyed the fresh air, the seagulls, and the boats. It was a lovely time, because it was the first point during the day where we saw Mattie at peace, eating and playing. He is now into hotdogs. Not a thing I would feed him prior to his illness, but if he wants to eat something now, I accept anything he wants. He ate an entire hotdog, ate some fries, drank water, and ate a whole small cup of ice cream. It was amazing! We haven't seen this much food consumption in weeks. It made us all happy, especially since I look at Mattie's tiny body and wonder how much more weight can he lose? Kathy, our nurse practitioner, explained to us on friday, that the more weight Mattie has, the better his chances that his body will be able to recuperate and flush out the chemo. That was definitely an interesting fact.
Vicki, Mattie, and Peter at Inner Harbor
We are now planning our day tomorrow and coming to terms with our next hospitalization. I truly appreciate all the supportive e-mails you all sent me between yesterday and today. I appreciate you acknowledging what a difficult week it has been for us, and I greatly appreciate your insights about what transpired yesterday with my decision to give Mattie the yogurt (thereby preventing him from getting his MRI). You are right, scans can always be rescheduled, and sometimes as a mom I have to make some executive decisions that no doctor or nurse can possibly understand. Thank you for sharing your thoughts with me!
Mattie was excited to open up several packages today. We have a Mattie pile of gifts in our living room, and he opens up a few at a time. Thank you all for always thinking of Mattie. Kazu, Mattie loves the Word World, and Grandma, Mattie will get a lot of use out of the fleece hat, and of course the puzzle and game, and Julia and David thank you for the Paddington Bear, story, and airplane paper kit. On the electronic front, thank you Karen, Kim, Susan, and Emily W for the wonderful e-cards and Barbsie for the great e-mail. Thank you Ann for continuing to check in with us yesterday and today. If I were you, I would be running the other way, not knowing how in the world to handle all of our emotions. We admire your commitment and dedication and what you continue to do for our family.
2 comments:
Vicki, Pete and Mattie,
Kazu, Junko, Kazuko, Bethie and me are all thinking of you, and the description of the railroad museum and dinner at the harbor were also therapeutic for us! Kazu says he feels like eating a hotdog tonight. Love, us.
Dear Mattie, Vicki and Pete,
What beautiful pictures of all of you. Vicki--you look especially beautiful in these pictures--the sunshine agrees with you:-)
As for the yogurt--that was simply a mother's heart and love at work--nothing more, nothing less. I know so much in life is complicated and ambiguous and other things are simple and crystal clear--why you gave Mattie the yogurt is an example of the latter.
Thinking of you all and praying for a better week,
Amany
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