Day 10
Happy Columbus Day! We love it in our house, Federal employees get a day off, so usually Eric and I get the day together. Only this year, I thought I was outsmarting school and I booked Sydney’s GI appointment for today…turns out, um - her college didn’t take Monday off - they are taking Friday instead. Grrr… So she, Eric, Bradley and I drove to Santa Barbara complete with the hour delay on the 101 because someone ended up having a really bad Monday morning.
Regardless, we made it. It was important today, so Sydney missed one of her classes and Bradley missed his whole school day. But Bradley needed a plan to deal with his digestive track and actually be more likely to successfully staying in school each day. And then Sydney needed a follow up too. Back in July, Sydney had a Nissen Fundaplication - yes, now I have two out of three children in my house with his same surgical procedure to help stave off the reflux. What are the odds? I don’t know but I would be curious to know for sure. Two out of three? Huh, how on earth did Madison escape? Well, she almost didn’t. When she was about three months old, her reflux was so bad, she would stop breathing and as a result she had to wear an Apnea Monitor for about six months til she outgrew a lot of her reflux. Back then, when they did the barium x-ray, the doctor put her at a Grade 3 reflux, but barely. He felt that she was just barely below the surgical threshold, so rather than put her at a 4, he put her at grade 3. Yikes. Luckily, she outgrew hers completely.
We had hoped Sydney would, but she was having constant reflux that turned into massive sinus infections. From there she would experience the feeling of drowning all night when she was propped up in bed trying to sleep. We literally limped through her Senior year I kid you not.
Her surgery went well, but recovery was very hard. Once she started getting relief from the pain, she starting realizing how hungry she was. An all clear liquid diet for two weeks took fifteen-ish pounds from her and she was a rail. Scary thin. But once she was cleared to eat, we tried to get some emergency stores back in place and she’s better now. All was well, but then one hard practice and her esophagus seems to have started to spasm causing a lot of pain in her chest and upper abdomen, and it potentially irritated her asthma. So we upped her asthma med until tomorrow at least, when she sees her doc in control of that, and her GI today gave her an as needed med to help with the spasms until those ease off in another few months, because he believes they will.
All in all, it was a good appointment and we came out with a good plan for each of them. Her weight was great and Bradley is slightly taller, and though his weight was slightly down - he’s safe. So a good appointment.
As we left though, we met the face of Hate. We were waiting for the elevator, and this elderly woman who could barely walk, was at the elevator as well. When the door opened we moved to hold the door for her as she told us to go ahead. I said to her, “go ahead, we’ll hold the door for you.”
This woman looked at us and and said “No, you go, I don’t want to ride with you.”
We stared at her a moment, nodded and Eric goes, “Okay.” We moved onto the elevator, keeping our precious boy away from her as much as possible, and as she moved back Sydney hit the button to choose our floor and close the door, I just looked at her and said “We don’t want to ride with you either.” I looked Hate in the face today, and man it was ugly and I tried very hard to not let it touch my boy, even as it overflowed from this woman. Just so sad. I guess she didn’t see my shirt so she would know that my son is “Down Right Perfect.”
So except for her, not too bad a day. Add in that Bradley made it to the potty today when he had three showers yesterday because he didn’t…not too bad a day at all!
31For21 Blog Challenge for Down Syndrome Awareness and Acceptance. Some days it’s just more of a challenge than others.
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