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Monday, July 16, 2012

On a positive note...

Ever since I posted the picture of what a person with RP's vision is like, I felt pretty depressed. I don't want my blog to be a depressing one, but at the same time I want everyone who is following to know exactly what Usher Syndrome is all about. I hope you all took it as an informative post and not a depressing one, because I do not want my blog to leave anyone feeling down!

Let's talk about the good stuff now! This past Friday I turned Hunter's ears up a notch. He didn't seem to mind it (no excessive blinking) although he was a little jumpity at times, I guess depending on what kind of environment he is in. At the Little Gym, the excessive noise didn't seem to bother him, but if we were at home and it was quiet when I said he name, he would jump. Today I decided to turn them back down to the previous program because he woke up with a virus and was not himself this morning. And when I would say something he would jump and start to whine. So yes, I gave in. I turned them back up after his bath, but he was fighting me to put them on. He then went to his room and did the sign for sleep... so on one hand I thought he could possibly really be tired because he threw up twice this morning and took 2 naps today for a whopping 5+ hours of sleep. And a lot of times when he sleeps a lot during the day it makes him more sleepy at night and he goes down early. On the other hand, part of me thought he was just signing sleep because he didn't want to put his ears back on. I think he knows now that when he signs sleep we take them off. Considering he's been in bed for over 30 minutes, isn't crying but is babbling, kicking, dancing and every once in a while sticks his head right into the video monitor camera... I'll go with the second hand. I think he knows we are watching ;)

This weekend Blair and I got a date night on Friday with some much needed alone and adult time. We are very lucky to have parents who live driving distance from our house and are always willing to watch Hunter for us. Saturday was full of fun with my neice Evangeline's birthday party and a gathering for Blair's grandfather who was recently diagnosed with lung cancer. His grandfather has touched so many people's lives through his sincerity and humilty that I think the whole town of Loreauville was there! There was sooo much food, and great music! Here is a video of Hunter "two steppin"! I truly believe it was music to his ears :) 

Notice that holding on to the tent gave Hunter a since of independence and he was able to easily move up and down on his own. His big thing lately is walking.... although he isn't walking on his own yet because he simply has not yet developed his balance due to the Usher Syndrome, he wants EVERYONE to walk him EVERYWHERE. He wants to be independent so badly, just as every 16 month old does... so I think once he does start walking he is going to start running! On another note, our OT came over on Thursday and still says she is continuing to see great improvement in his balance. Slowly but surely he is making progress. Although the average walking age for children born with Usher Syndrome is 21-24 months, she thinks because he wants it so badly that he will be walking by 19 months. We all hope so poor baby, he is just so so ready! Here is a video from the little gym on Saturday walking with assitance there as well! Oh and I almost forgot... when we were at Sunday lunch at my grandmother's yesterday, Blair let Hunter go about 2-3 feet in front of while while he was sitting, and Hunter walked right into his lap! Whether it was him trying to catch his balance and falling into the walk or not, we were all cheering like the Saints had just won the superbowl!

Here are a few pictures from the birthday party on Saturday. We tried a few group pictures at the very beginning, and Hunter was the only one being a party pooper. But I guess they make for some funny pictures!

Hunter and Evangeline

We tried everything to get him to smile! Haha!

Have a great week everybody!


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