Ronan had two appointments scheduled for today. They were supposed to be his surgeon first then the neurologist. They got switched because his surgeon was was busy making rounds at the hospital across the street. Perhaps this was an act of providence because the timing lined up just right for something to occur at the right moment.
The neurologist thought that Ronan's tremor episodes might be due to reflux but he wants me to continue to try and capture them on video. If I am unable to he will wear a portable EEG for five days. Since the episodes seem small he says we can wait and see for awhile. Next we were taken back to the surgeon's room and waited. Ronan had a reflux choking episode. I had been telling everyone for months about his reflux choking episodes and now finally someone could see what I meant.
When he is having an episode he acts exactly like he is choking on an object. His arms flail and his eyes go wide. He makes no noise and I have to smack his back really hard to get him out of it. His surgeon said with him having such episodes and the fact that he is needing routine esophageal dilations that it would seem we are at the point of needing reflux surgery. The surgery is a major operation with about a weeks hospital stay.
After the surgery he will most likely only need one more dilation and then he would never need another esophagus dilation again. The surgeon also informed me that until Ronan is old enough to grasp the concept of thoroughly chewing his food that he will have to stay on a puree only diet. The last part struck me deep because I don't know at what point in time Ronan will be able to understand how he needs to thoroughly chew his food.
I worry about Ronan's quality of life and wonder if he'll ever be able to sit down at the table after school and eat cookies with his brothers and sisters. When he was born I thought the big deal was his heart and the fact he had Down Syndrome. Turns out the thing I least worried about ended up being his biggest issue. The hole in his heart closed on its own and Down Syndrome is just a side fact about Ronan. The esophagus I thought was behind us when it was repaired when he was a day old. But it has become his greatest obstacle this far.
His surgeon is going to consult with his GI doctor and get back to me with the plan. He thought most likely Ronan's GI will want to wait until August 4th to go ahead and do the next dilation and get a good endoscopic view. After that if they both concur reflux surgery will be scheduled, as I type that I feel uneasy but I am trying to remember how God has never failed to watch and protect my little boy.
For the evening it was my niece Hannah's birthday party. Hannah turns 4 tomorrow. She and Jadzia are around three months apart and are best friends. Jadzia got Hannah a purple barbie since Hannah's favorite color is purple. I had Human Biology class tonight and even though my professor was out of town we had an extra credit movie to watch. This was good because the class was only half as long as normal. I dropped the kids off at my brother's and sister in-law's. My parents were there and they had lots of help.
I snapped a few pictures of Hannah's cake before I left because I knew it would most likely be cut into before I returned. After class I came back to see if I could catch any of the festivities. I arrived just in time to see Hannah open her presents. She was well loved. She had had a lalaloopsy cake and got four lalaloopsy dolls. She also got another very pretty realistic looking doll and many other treasures.
The kids loved playing in the back yard. Landon was excited because he was getting better at making baskets with the basket ball. The kids played outside for awhile and then we headed back to the hotel. The kids got to bed late and I could hear them giggling and chatting for quite awhile after. Their energy seems endless.
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