With the weather starting to be nice outside, I find it harder and harder to get on the computer to blog. So I thought I would post a quick update with what we have been up to. Now thinking about it, I don't think I have much to share.
- A couple weeks ago, Max had an eye exam. No dilatation was needed this time. In 6 months they will dilate his eyes to take a look. His eyes are developing well. He had a VEP done where they put about five electrodes on his head and he watches a TV screen with black and white bars. It is like reading an eye chart for those who can not. His vision is 20/30. Technology is crazy!
- We visited Max's soon-to-be Early Childhood teacher in the school district we are in. The visit went very well and helped calm my nerves about my little guy going to school when he turns three in November. Our service coordinator from Birth-to-Three was also with us. We all went over what happens between now and when Max starts Early Childhood.
- Since Ava will be starting Kindergarten in the Fall and Max with start Early Childhood in November, we had to find child care in the school district he will be attending in order for a van to pick him up and drop him off from school. I think this is the hardest thing with the upcoming transition. . . so far! Right now, the kids go to a WONDERFUL day-care center close to John and my work in Madison. My goal is to transition Max at the beginning of September when Ava starts school so he doesn't have two BIG changes in November. - We have hit a bump in the road with Max's feeding. He has decided he doesn't want to eat by mouth anymore. We have been giving him two ounces of pediasure about five times a day by mouth along with his g-tube feeds. He hasn't gotten sick, so we feel comfortable giving him two ounces of pediasure by mouth at a time. So, he gets all of his calories during the day and no longer gets his overnight drip!!! Problem is, he doesn't want to eat by mouth. We usually wait to give him his cup until after he eats food by mouth. Now, he pushes the food away without even taking a bite and starts signing drink. I have also tried to give him his cup with his food so he wouldn't have the anticipation of getting his cup after he eats. He doesn't even have an interest for cheetos and Cheerios. Any suggestions!! His therapist said it sounds like Max's pattern with developing. He usually concentrates on just one thing for a while before he will add something new. Or drinking is just easier for him and he is going to choose the easy route. Help! Any suggestions? Here we go again, one step forward. . . two steps back!
- Max still loves to swing. As soon as we get home, he starts signing swing and wants to go to the park.
- I am getting excited for my trip to Florida with four other mommies that have a child with RTS. We are leaving Thursday, June 25 and coming back on Sunday, June 28. John, Thank you for letting me take this trip!!
- John and I went to our first Brewer game of the year with his sister and brother-in-law (Deanna and Ryan). We had fun and are looking forward to going to a couple more games this year.
Today was Ava's last day of swimming lessons for this session. She is a good little swimmer and is becoming confident in the water. We will have to take her to the pool this summer to keep her skills up. I am glad she loves being in the water.
Her report card and a picture of Ava and her instructor: Working on the backstroke:
I married my husband, John, in June of 2002. We have two children, Ava and Max. Max was born on November 15, 2006 with a rare syndrome (Rubinstein-Taybi Syndrome). I hope to educate others about RTS and meet families on the same journey.