It's amazing how when you think your entire world will fall in on you, something happens to catch you right before you hit the ground. This last week has been up and down. As I had shared last week I was excited that Beckett was able to go to summer camp. Not even 24 hours after posting in my blog my excitement I get that phone call I was hoping I wouldn't get. They weren't sure they would be able to let him stay. He was having accidents in his pants and the little girl who was shadowing him wasn't really prepared to change dirty underwear. I cried all day and night just praying that God would allow something to work out so Chris and I could get a break. We had gone in to talk to the director and she said to us she really wanted this to work. She told us they were going give it until Friday to decide whether or not he would be able to come back the next week. I figured that Beckett was nervous and had high anxiety that was literally "scaring the poop" out of him. When we returned on Thursday the director had said she was able to switch the schedule around to allow one of her counselors who was a "mom" take care of him. I was so relieved that she did that for Beckett. So far, he has been back this week, still having a couple of accidents but we now have someone who isn't worried about cleaning up a mess. Come to find out Ms. Dee has eight children of her own. She said it doesn't bother her at all and she was glad to be able to help. I was so ecstatic when I picked him up he didn't have one accident today!! I hope the rest of the week at camp goes the way today did.
Besides the good news of Beckett not having an accident today. The best was yet to come. I got a call from my geneticist this afternoon. He shared with me that he had gotten an email from a researcher at Texas Children's Hospital asking him if he had any families with SYNGAP1. He said to me; "Monica, I had gotten your email and two days later I received an email out of the blue from a researcher here at Texas Children's wanting to know if I had any patients with SYNGAP1. I was scratching my head and thinking to myself, that's really odd and the two emails were totally unrelated?" He began to explain to me that they are about to begin a study on SYNGAP1 here in Houston at Texas Children's. They are looking for families wanting to participate that have children diagnosed with SYNGAP1. He ask me if I would have a problem with him giving me Beckett's information. Of course my response was ABSOLUTLEY NOT!! This is great news!!! I am so excited the this has gotten more attention in the scientific world!!! I am so excited that they want to use Beckett in their study!!! WHOOP! Before I ended my conversation with Dr. Scott he mentioned again how much of a coincidence it was to get two emails in less than two days totally unrelated about the same thing. I told him that that's not a coincidence...that's a God thing!! He giggled over the phone and said, "you are probably right, I do believe that God allows things to happen like this." I told him, "This was an answered prayer!" He told me, "Yep..I believe in those too!"
Besides the good news of Beckett not having an accident today. The best was yet to come. I got a call from my geneticist this afternoon. He shared with me that he had gotten an email from a researcher at Texas Children's Hospital asking him if he had any families with SYNGAP1. He said to me; "Monica, I had gotten your email and two days later I received an email out of the blue from a researcher here at Texas Children's wanting to know if I had any patients with SYNGAP1. I was scratching my head and thinking to myself, that's really odd and the two emails were totally unrelated?" He began to explain to me that they are about to begin a study on SYNGAP1 here in Houston at Texas Children's. They are looking for families wanting to participate that have children diagnosed with SYNGAP1. He ask me if I would have a problem with him giving me Beckett's information. Of course my response was ABSOLUTLEY NOT!! This is great news!!! I am so excited the this has gotten more attention in the scientific world!!! I am so excited that they want to use Beckett in their study!!! WHOOP! Before I ended my conversation with Dr. Scott he mentioned again how much of a coincidence it was to get two emails in less than two days totally unrelated about the same thing. I told him that that's not a coincidence...that's a God thing!! He giggled over the phone and said, "you are probably right, I do believe that God allows things to happen like this." I told him, "This was an answered prayer!" He told me, "Yep..I believe in those too!"
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