$250,000 for Rett Syndrome Research – one vote!
For all of my friends that are on facebook…. Please take a moment and vote for the Rett Syndrome Research Trust as part of the Chase Giving Campaign. We have to opportunity to win $250,000 for Rett Syndrome Research! Keep in mind that all of the charities in the TOP 10 will receive $100,00!! [...]
Birthday Boy (well….almost)
Boston turns THREE on Wednesday – we wanted his cousins to be able to join in the fun so we celebrated this weekend. Boston is still not eating much in the way of solid foods but….I had such HIGH HOPES for the cupcake – he seems SO excited about it… nope. *sigh* there is always [...]
Heaven gets another angel
I have not been able to sit down and put into words the loss that occurred this week. To be honest, I probably still can’t come up with the words to share. If you have followed my blog for awhile you know that from the moment Rett Syndrome entered our world so have the amazing [...]
Sorry!
Yes…Brookie is HOME! I am so SORRY that I have not updated the blog! She came home on Monday. We have continued the antibiotics at home along with the breathing treatments around the clock. We also had “The Vest” delivered to our house. We will be working with her doctors and insurance on getting this [...]
Pneumonia
In the hospital….not the way we has hoped to spend our Labor Day weekend. Her left lower lung is affected. She is on IV antibiotics and receiving treatments with “The Vest” three times a day. Unfortunate she has been unable to keep her stats up on her own so we are on Oxygen too. We [...]
After school
This kid is so stinkin cute, I had to share this with you all. I picked him of from preschool – yes…..preschool, I still can’t get use to saying that. If watching this doesn’t make you smile….nothing will. Love this kid!
A sad day
Last night the world lost another angel….. Karly passed away in the arms of her family. She has had a tough year and now is free from Rett Syndrome – free to walk, run, dance, and sing with the angels. Of course that does not make it easy on those she left behind….her amazing family. [...]
PT and AFO’s
Sorry if this title sounds like secret code :) We have FINALLY been approved to start Physical Therapy again – surgery was in April but who is counting right? We have a new physical therapist and we LOVE her. Amber saw her last week when she sat in on the first session. I gave her [...]
THE WIGGLES!!!!
We had an AMAZING time on Friday at the Wiggles concert!! We also had an unexpected surprise….Thursday night I was chatting online with a friend of mine…who ended up hooking me up with a DIRECT contact to the Wiggles. LONG story short – three emails and a phone call later we were scheduled to be [...]
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