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Stupid Rett Syndrome
First, I need to apologize – I have been a blog slacker for sure! I think the holidays are typically a tough time for me and either I don’t feel like putting my feelings out there or can’t find the time to do so. However, I know you all love and support us through this […]
Today Boston had dental surgery – it was nothing major, it was outpatient, no big deal. Those words are easy to type now that it is over and we are home ;) because leading up to it and during it felt pretty MAJOR! To be honest I did not sleep great last night. The fear […]
This is a quote from another Rett mamma, Elizabeth – it is a part of the Army Of Us Rett Syndrome Awareness Campaign. All month long they are sharing amazing facts, links, photos, and of course amazing quotes. This one sort of sucker punched me. It is something that as a mom I think about […]
Awareness Post: Going to the dentist sucks
I get it NO ONE likes going to the dentist (sorry for any dentist friends I have!) But seriously, does anyone? I hate it. But you know what is worse than going to the dentist myself? Taking MY KIDS to the dentist. I honestly think that taking my poor kiddo (who has Down Syndrome, Autism, and […]
Rett Syndrome is sort of known as a “girl thing.” RSRT published a great blog post talking about “Why Girls?” I encourage you to check out that post by clicking HERE. While it is true Rett Syndrome MAINLY affects girls there are some pretty spectacular fellas out there fighting their own fight right along side […]
I KNEW when I said I would post EVERY day in October that I would most likely FAIL. I set myself up for failure really. So I apologize and today instead of an awareness post full of facts about Rett Syndrome or Down Syndrome I post this picture. It was taken almost a year ago. […]
One issue that comes along with Rett Syndrome are orthopedic issues. For those of you who follow this blog – you have seen the broken bones, hip reconstruction, and scoliosis however it even affects her wrists. She struggles with wrist contractures, which can happen from the years of constant “hand wringing” also – just being in […]
Lets share our EXTRAORDINARY kiddos with Social Media!
I wanted to share a cool new photo border with all of my DS/ASD friends! It is the perfect way to help share photos and AWARENESS on social media*. Many people do not realize that a child can indeed have BOTH Down Syndrome AND Autism. I figure images like this will spark conversation which will lead […]
Let that sink in for a second. How much hope does this statement give you? For me it is overwhelming! I can’t imagine that there are many people that read this blog whose life has not been touched by someone who SUFFERS from one of these disorders. Researchers refer to Rett Syndrome as a “Pandora’s […]
A Day Off (no, out – well off too!)
I apologize for not posting yesterday but I had a day Off I mean out…..well I was “off” too. Kristin and I took off for Southbend. Unfortunately our game tickets fell through but Notre Dame on game day is always a fun place to be. It is a HUGE bonus that our aunt lives there […]