Yesterday I read a post by another PWS mom on FB who was upset because no one commented on any of her posts or questions. I immediately felt guilty thinking that I should have been a better PWS FB person. I started looking through their posts and I found a couple pics, a couple comments and one question they had asked that had gone unanswered. The question was not in any of the PWS forums and it was done as a note that you had to click on. I know when I joined FB it was all a new world and it was nice to just be able to catch up with people I had not seen in a long time. When we found out that Zach had Prader Willi Syndrome I made an active effort to become involved in the PWS forums here on FB. I made an effort to reach out to other PWS moms and to get to know them. I made the effort, I did not wait for everyone to find me, seek me out or to give me answers every time I had a question. This is FB, not every post gets seen by everyone. Sometimes there is one person who has the answer you need and you need to keep pressing until you get the answer. For me the answer I needed was finding the perfect Endo. The first Endo David and I took Zach to said that he doesn't do GH until 12 months at the earliest. We had already done a lot of research and we were pretty sure this wasn't correct. Through another PWS mom we heard of Dr Miller who we seriously credit with saving Z's life and making him the super star he is today. We made the effort, no one held our hand and gave us the answers. We got answers because we put in the effort - not because we asked one question.
Okay - getting off my soap box...
I took the kids to hippo therapy this afternoon. I didn't think it felt quite as hot as it had and they missed last Saturday.
We were all hot and sweaty by the end of their lessons but their had a great time. Suzie is now using stirrups which is just too cute. Zachy has been pretty fussy the last 2 sessions but I think it is from the heat.
I was able to get a couple videos of Suzie riding and trotting.
And some various pics...
Okay - getting off my soap box...
I took the kids to hippo therapy this afternoon. I didn't think it felt quite as hot as it had and they missed last Saturday.
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| Zachy before riding Crissy |
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| Zachy after riding Chrissy. Do you think he was a little overheated? |
I was able to get a couple videos of Suzie riding and trotting.
And some various pics...
I couldn't agree more!!!!
ReplyDeleteI love FB, but I really have so much information flowing through that page that if I want to know how someone is doing, I really have to click on their name for their recent info to come through. Otherwise I can only get through a page or two and not the 5 or 6 or 8 pages that are new since the last time I checked in. I just simply can not read it all, so I certainly can not reply to all. Especially since Rafe came home from deployment, I have not been able to be on as much. I don't feel "entitled" to an answer, nor do I feel left out if I don't get one. I just keep asking the question until someone notices me. PWS moms of all people should know how time consuming the child care and therapies are.