Sunday, July 31, 2011

Ember update

Ember is doing very well. She is happy and enjoying any attention she gets - except from Sienna - she is still unsure of her motives! Ember has an appointment on Monday Aug. 8 at Shriner's Children's Hospital in Philadelphia. From what I hear that is THE place to take her for arthrogryposis. I am looking forward to hearing what they say about her and future treatments. She wants so badly to be able to do the things Sienna does. It is sad to see her frustrated because she can't make her arms work the way she wants. We have been trying to draw blood from her for various tests since we don't have any health history on her. I took her to 2 different hospital labs last week and after being poked countless times and looked at by "so and so who can find ANY vein.." we are headed to the Children's hospital in the morning. She will be anaesthetised and they will use an ultrasound to help find a vein if needed. She has NO visible veins - common with her condition. Poor girl. I know tomorrow will not be a good day for her. Plus she can not have food after midnight and I know she'll not be happy about that fact in the morning. I have attached a couple of videos - this first one shows how Ember plays - if you can't use your hands to play, you use your face! She pushes toys around with her face, turns book pages with her face, points to what she wants with her nose, etc. Where there is a will, there's a way.
video
video

Wednesday, July 20, 2011

a brief detour from Ember - for a public service announcement :)


This is my precious Sienna. Sienna has down syndrome.

She just celebrated her 2nd birthday last week. She is amazing and I am immensely proud of her and so grateful to be her mother.

I can not imagine my world without her. She is funny, smart, loving, naughty, deserving of love. She has so much to offer me, our family, our friends, our society in general.

See this boy?

This precious soul also has down syndrome. He is wasting away in an adult mental institution because his country (same as where Ember was born) does not see the value of individuals with down syndrome. This picture of him was taken very recently.

See this precious girl?

She also has down syndrome. She is also an orphan who can be adopted. This picture was taken while she was still at her baby house. Isn't she cute?

See this precious soul?

That is the same little girl as above. This picture was taken only a few weeks after poor Teri Lynn was transferred to an adult mental institution. See the worry in her eyes? How terrified she must be. It is heartbreaking. I look at Sienna and try and picture her being treated that way. This little girl needs a family to step up and rescue her. Adopt her. Take her home and hold her tight. Take a minute to pray that a family finds her and saves her. She already has a large grant to help financially cover the costs of her adoption.
More information can be found HERE.

Wednesday, July 6, 2011

July 4

I love the 4th of July. I love my country and the freedoms I have. I love knowing that one of America's newest citizens is loved, wanted, and happy. Routines are starting to be established and everyone seems to be adjusting. Ember is doing well. Her resp. infection is all cleared up, her application to Shriner's hospital has been accepted, she is eating well - albeit still mostly baby food, oatmeal, and soup. She is a huge personality in a small package. This girl can charm the pants off anyone if she wants. I think because she can't use her arms, hands, etc. that she relies on her facial expressions and personality. She is full of it!