Anybody out there?
Hey is anybody out there reading this stuff? Please let me know! Anyway, I took my daughter to the endocrinologist for a routine check up today and everything looks pretty good. Is it just me or does it feel like a full time job to just take care of all these appointments? We see the endocrinologist every 3 months, the ENT every 3 months, the eye doctor every 6 months, the cardiologist, the orthotist, we have CPSE meetings, etc etc. My poor daughter sees more specialists than an 90 year old woman! (Believe me I know. My grandmother is 101 years old and I don’t think she goes to the MD as often as my daughter does.) I don’t mean to complain. I know it is not so bad and that things could always be worse and I am grateful for her health. I am just wondering if anybody else is finding it EXHAUSTING at times? Friends/relatives with typical kids will call to ask for playdates and to meet up and I just want to RELAX on the odd day that we have no appointments.
If there is anybody out there please comment. I’ll try to make the next post a bit more positive. Usually I am not this crabby it’s just that I was out from 12:45 to 4PM just dealing with this appointment stuff. ARRGHH!
Uncategorized | Comments (12)12 Responses to “Anybody out there?”
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Yes, we are out here. Thank you for blogging. It is great to be able to read others experiences and relate. I totally relate to your experience with the drs. It can be exhausting.
When we do a play date, I can’t even socialize with the other moms. I have to chase my son around to make sure he is not into everything.
Hang in there; it does get a lot better! Our two daughters w/DS are now 17 & 20. We are very involved in many Special Olympic Sports, dance, etc. & very rarely see a doctor. They still receive therapies but they are done at school. All the best =o) Maura
I love this blog..Please keep it up, I know there are a lot of people out there that will be able to relate.
Justin
Thanks so much guys. It is good to know you are out there. I will try to add some more stuff onto the blog during the coming week. It is so great to hear from you and know you are out there.
I am thankful for such amazing sites as this one! And yes, we are all here to share resources, insite, and our own personal experiences. My daughter is going to be 24 years old and each day she says or does something that makes me laugh. She too had some major medical conditions (ie)open heart surgery etc. So if I can help in any way just let me know. Jan
I find myself bringing an positive book with me on all of our visits. Try bringing “That Went Well…” by Terrel Dougan to your next appointment. The encouraging stories in there are such an uplift. You can’t finish this book without having renewed faith in community and the human race.
Wow! Thank you very much!
I always wanted to write in my site something like that. Can I take part of your post to my site?
Of course, I will add backlink?
Regards, Timur I.
Hello Timur I,
I am so glad you liked my post. Ofcourse you can take part of my post to your site and add a back link. I am very flattered. Thanks for your input.
Wow do we know what you mean about the drs appts. We have a 4 month old, and spent the entire second half of the pregnancy and the first 2 months of her life in the drs offices or hospitals. Hang in there though, things will settle down and get better, ours is just starting and we’re so thankful!
Hello everyone I never thought I would be leaving a comment on a web site for parents of children with down syndrome. Well here I am!!! proud to be leaving a comment. I am a 41 year old single mom who just gave birth to Noah whom has down syndrome. He is so precious to me and my family. I wiil be back soon it is very late. Just wanted to introduce myself
oh my, I just read your post, Im a little late, but its where I am now. Teacher every week, cariology, Md, meds every 5 hours…not to mention a teenager who is getting a drivers license, baseball, school functions, church,eye appointments for Micah, whewwwwww. Im tired thinking about it. I can relate. I guess we just have to take it one day at a time, put a good cd on in the car, grab a starbucks and enjoy the ride:) Im with ya!
You ask, “Is anybody out there reading this stuff?”.
Well,I’m reading your stuff, as I’m infomred by hearing stories about parents’ experiences raising children, and reading their blogs about Down syndrome and their child’s educational develoment.
While I do not have a child or sib with Down syndrome, I am close friends with parents of a family of five children; their youngest, a nine year old son, has Down Syndrome. For years now, they have been supporting research into understanding the cognitive difficulties associated with Down Syndrome, and recently, very generously, have founded Research Down syndrome(RDS), and I’ve agreed to assist as President of the foundation. RDS is 501c3 approved nfp foundation supporting research at leading univeristies aimed at identifying potential pharmacological therapies that could improve cognition in persons with Ds, and perhaps assist these individuals achieve independent living as they move into adulthood.
If you are interested in more information on our foundation, see our website: http://www.researchds.org, and view our video.
Laura, if you ever would have any questions on our work, or if we could serve as a source of information for you on the research ongoing in Ds cognitive therapy, please feel free to contact me.
Dr. Robert Schoen rschoen@researchds.org