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Brookie Update....our time in the PICU

Brookie Update….our time in the PICU

  I forget that there are many of my blog readers that are not on facebook and you probably have wondered what the heck happened to me? Well…it has been an insane 10 days! Last Monday we ended up down in Lutheran Hospital PICU with double pneumonia. It got BAD fast, like over night fast. […]

"Boston Cards"

“Boston Cards”

Most of you know all about the GP2C “Purple Cards” we have for Brooklyn that explains Rett Syndrome, they are life savers for us when we are out and about and people have questions about Brookie or when we are at a new doctor or in the hospital – it is a rule of mine […]

"I broke her": ok Rett broke her, I'm trying to mend her

“I broke her”: ok Rett broke her, I’m trying to mend her

(*thank you my friend Beth for the title change suggestion) I did a quick post on facebook about Brookie’s broken tibia and wanted to be able to explain more of what happened. Thursday after school I was transitioning her from her wheelchair to her recliner and her leg and foot got bent under her and […]

Laquita

Laquita

You have often heard me say that it “takes a village” and it is true! This summer we added a new member to our village. Her name is Laquita and she is AWESOME. We qualified for some monthly respite care hours over a year ago and worked with two nurses prior to Laquita, they were […]

Tobii Mounts are done!

Tobii Mounts are done!

I need to give a BIG thank you to Jon for taking time today to get both of Brooklyn’s mounts for the MyTobii together. We have two, one for her wheelchair and another rolling mount that can be used with other seats. This of course is the one for her wheelchair. I took one look […]

Awareness Month

Awareness Month

I have had a few people ask me about some of the photos I had on facebook throughout October so I thought I might do a quick blog post and include them all here. I hope you enjoy them!

How do you do it?

How do you do it?

Lately, (maybe since it is Awareness month and I am talking about Down Syndrome and Rett Syndrome more) I have had quite a few people ask me “How do you do it?”  Which reminded me that back in 2010, I had a friend that was doing a series of blog posts about “How do you […]

Making Choices

Making Choices

Many of you who follow this blog know that Boston is non-verbal. We currently have no real form of communication. We guess, a lot. He yells a lot. We have a couple “basic” things- he knows where his cups are stored and will go near them (and sometimes yell) letting us know he is thirsty.  […]

Brooklyn Age 2 = year of Rett Syndrome diagnosis.

How to tell a family their daughter has Rett Syndrome: A message to all doctors and genetic counselors

It is Down Syndrome Awareness month and I read a brilliant post about “How to Deliver A Down Syndrome Diagnosis the right way” Which, by the way, I encourage everyone to read. However, this got me thinking….maybe a letter also needs to be written on “How to tell a family that their daughter has Rett […]

My Superheroes

My Superheroes

I want to take a moment and honor the two little superheroes in my life….Boston and Brooklyn. These little loves of mine truly fight BIG battles each and every day. Boston as he tackles the duel diagnosis of Down Syndrome and Autism. He fights feeding difficulties, GI issues, sensory processing, cognitive disabilities, fine motor skill […]