On May 21rst Nick, in our backyard, began to swallow normally again. I don’t know why I decided to feed him applesauce at that moment. I think it may be because he looked slightly different. More alert and engaged. I grabbed a spoon and a small amount of applesauce and placed it in his mouth. He started rolling it around on his tongue and he had a ever so slight smile on his face. Then he started making sounds of delight. Then he swallowed and looked to me for more.
I went nutty. I did a little dance and I also immediately filmed it on my iPhone in case this was a one time event I wanted evidence.
He did it again and again. It was our Applesauce Miracle.
When I showed it to the speech therapist she immediately set up a swallow study which means he will eat something under her guidance and they will film where it goes internally. They want to make sure it goes into his stomach and not into his lungs which would obviously cause big problems.
With this new happening I called Grandpa Joe who since Nick lay very ill in the hospital would tell him that one day he and Nick would eat French Silk Pie together. French Silk Pie was one of Nicks favorite pies. One week after I called Joe he showed up at our house with a slice of French Silk Pie and Apple pie (another fave) and Nick had his first tastes. It was beautiful to watch. To know that Nick months ago was laying on a hospital bed full of tubes hearing his Grandfather whisper this promise to him and today being able to witness a promise kept there are actually no words to describe my feeling of that day….there are only feelings.
Completely on the other side of this phenomenon of becoming more aware is Nicks frustration of not being able to do what he used to. You can see Nick try so hard to move his limbs or speak and nothing is going the way he wants to so in response Nick has been grinding his teeth LOUDLY. So loud in fact, I have run across the room to check to see how many he has cracked in half. So loud that his therapy team has jumped. So loud that it wakes me up out of a sound sleep.
Nick is frustrated and I am sure angry and for him this is the way to lash out. To do something that causes a great reaction around him.
When Nick can’t sleep which is something that has been happening again, he cracks and grinds his teeth. Yes there are small chips happening and no there is no way to stop it. I have him chewing on rubber teething things that therapists use to teach chewing which does stop the noise for a bit but I can’t stand there and hold it all day and I can’t rig it to keep it in his mouth because he may bite off a piece and choke on it.
So I try with all of my might to practice non attachment. I say over and over in my head that this is Nick’s life. This is Nick’s journey and those are Nick’s teeth. I can’t proclaim to know all the answers. I just whisper that it will be a bummer when he is walking and talking again to have no teeth. It doesn’t work. Nick is very independent and if this is his only way to have control then that is what it is. I did ask the neurologist if it could be brain related and he said there are two theories. One is that it’s a pattern from where his brain is damaged but then why hasn’t he done it all along. Or two, it is as I say, frustration.
Either way it sucks.
On a positive note our family was gifted a Stander for our home!!!! A wonderful human being who has been reading my blog was so moved to act. She called me and asked what I was in need of and I told her I was working on getting a Stander for our house. A short time later I received an email saying it will arrive next week! Amazing right?!!!!
With this wonderful gift Nick will be able to stand in short bursts everyday. This means his feet will be planted on the ground giving neural feedback to his brain that this was something it had done before and lets get moving to make a path to do it again. It will also allow him to get stronger.
More good news is that a small and mighty group of folks have created “Nights for Nick” which was birthed from my gal pal Jackie. She emailed different folks to see if they would do something in honor of Nick and people have responded. First there was a night at Fat Cat tavern not to far from Inspiration Cafe which was hosted by Sarah and I heard was a reunion of sorts of old Inspiration Cafe folks.
Then there was a lemonade stand and a sidewalk sale hosted by different people on Summerdale Ave and that was a big success.
The following day was a fun fair held by two young men and their families in Oak Park which had a dunk tank and homemade games and signs and tickets being sold. They were the most successful so far and I get to meet them today in person which Nick and I are looking forward too!
And there was one of the first Nights for Nick which was a private event held in California given by my childhood friends.
All good things.
I will end saying I have 21 bruises on my legs and about four on my arms and actually one on my palm from wrestling the 90 lb wheelchair in and out of our car when I need to take Nick places. This has led to my rethinking our mode of transportation and we are leaning toward a Ford Transit Connect XLT wagon. It is a small heavy duty van with windows and it will allow me to still get Nick in the front seat but I can then pop the chair in back if I get a small ramp. We won’t have to get it tricked out in anyway which will save us about $20,000. Nick and I have some road tripping to do so I think this will be our best bet.
Also, thank you to all who have recently donated to our youcaring page! The money came just in time because our insurance company is now denying things left and right so I am paying for some big ticket items out of pocket. The only piece of the youcaring page that I have not solved yet is getting everyone a thank you note or email. It is just all too much trying to juggle. I am really really hoping that everyone knows how grateful, deep in our guts grateful ,we are to be supported and loved by so many.