Christmas Day was a complete joy. There is nothing better then the delighted exclamation of a little boy who just found out that Santa delivered on THE present he wanted more than anything in the world.
Unfortunately, in order to get that one thing, Nate apparently made a deal with a gypsy witch who then cursed him another disease.
The day after Christmas Nate started having stomach issues. I won't get into details because the details are horrifying but let's just say his stool was abnormal and accompanied by blood, a lot of blood. At one point after going to the bathroom, Nate looked in the potty and said, "Well, they don't make 'em like they used to".
We went back and forth with the doctors. The usual stuff. We tell them our child is suffering something and they think we are just overacting parents until Nate becomes vampirically pale (not the sexy shiny kind) and doctors realize he has lost so much blood that he needs a transfusion.
So that's what happened. Eventually Nate had to go into the O.R. for an endoscopy and a colonoscopy. He didn't mind the colonoscopy since it now gives him something to talk about with the elderly people he meets.
After the procedures they gave him a blood transfusion since he was in pretty bad shape. Seriously, the kid made Gollum look tan.
Nate going into the O.R. or coming out of the O.R. is a special kind of Nate. Going in, he gets some meds to relax him and he gets hilarious. You could give him a bag of Doritos and set him in front of a Seth Rogen movie and he'd be good.
Coming out of surgery is the opposite. He's crabby and completely irrational. Sometimes hilariously so. Like this time, when he was coming down off the anesthesia he insisted the doctors couldn't have put a camera down his throat since that would mean they would have cut a hole "all the way around his neck". In other words, he didn't believe the procedure was possible because it would have required chopping his head off. He's quiet but it's in the video below.
Once the doctors had taken a good look at his insides they were able to confidently tell us that Nate has Ulcerative Colitis. I know what you're thinking, but doesn't he already have SMARD? Apparently you can have two things.
There are no rules in life and he has what he has. So far, we don't know how this will impact his life. He's been on steroids to reduce the inflammation and heal his colon but it's not a long term solution. Over the coming weeks we'll see if the most benign of the medications will work. If not, we start getting into less pleasant methods. We still know very little.
The other day Nate started crying during school. The kids were measuring their feet and Nate knows that his feet are abnormally small because of SMARD. He began to cry and say he didn't want SMARD anymore. Sometimes, it just feels like too much. I KNOW that he can have any number of things but it FEELS like SMARD was enough. The great thing about Nate though, he is resilient. Nate's wonderful nurse talked him off that emotional ledge and he went back to his jolly, crazy self.
He spent today making Valentine's day cards for his "class", the group of toys he teaches at home, and teaching them about space. No not the space you're thinking of, this one:
Keep being you, Nate.
Oh my goodness, I am feeling for Nate. I had an endoscopy and a colonoscopy last week too. Neither are fun. He is my hero!
ReplyDeleteSeriously, talk to Allison about ulcerative colitis. She knows a lot about it and what meds work for her.
He is so cute and bright and whitty!
ReplyDeleteOh my heart breaks. Jeremy has had that moment too where he just wishes he didn't have to deal with the things he does. I feel for you. We love you. Tell Nate we love him.
ReplyDeleteWe fasted and prayed for him yesterday but he is always in our prayers, every day. Hugs!
ReplyDeleteThe wonderful attitude that just pours out of this blog..not sure if annie or scotty wrote it...says how blessed nate is to have such amazing parents. Keep hanging in there...we are all rooting for you and your adorably sweet little boy.
ReplyDeleteThe wonderful attitude that just pours out of this blog..not sure if annie or scotty wrote it...says how blessed nate is to have such amazing parents. Keep hanging in there...we are all rooting for you and your adorably sweet little boy.
ReplyDeleteOh no Annie, I am so sorry to hear this. Surely SMARD is truely enough for him to have to handle. I hope the steroids worked and no unpleasant methods had to be used. If they did, hopefully some bribery came in handy and put a smile back on his face. PS. We need to get your address. I bet Cali would love to be Nates Penpal. She'd probably love sending this handsome fellow love letters.
ReplyDeleteI'm really sorry about the ulcerative colitis :( I was diagnosed in 2008 and things got a lot better once I was on the meds, I hope that it is the same for Nate! Let me know if you ever want to talk about UC.
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