Inside the garden

        Eden is such a great kid, She is the perfect baby.  
Since she was a month old she started sleeping almost 6 hour nights. I don't know what its like to be sleep deprived, I cant imagine it. Sleep deprived moms are superwoman to me. 
At the moment she usually sleeps 12 hours straight. I defiantly get my beauty sleep!
      All in all Eden is a happy girl, we can have whole days without her really crying. When she wakes up in the morning or from a nap i hear her playing with her teddies, talking to them.
She is so calm and alert and of course i  think she is the smartest baby out there ;)
The only time she really cries is if someone she doesn't know is too enthusiastic and in her face. She is shy like i was as a kid and doesn't trust people she doesn't know. But she is getting better all the time. Now she only frowns.
She also will cry if we are doing an exercise in physio that is difficult for her. We have physiotherapy twice a week. The rest of the time i do exercises with her at home.
Mainly it is to keep her muscles strong. Eden loves her physiotherapist, Adi, and is always trying to impress her. Three weeks ago we got a stander. This helps Eden put pressure on her legs to keep them strong and prevent contractures. At the moment she can only stand for about 25 minutes at a time before having a hard time. It is difficult for her to hold up her head at the angle of the stander but it is also helping with her head control.

    A month ago we had a meeting in Alyn hospital, it is a great rehabilitation center and has quite a few SMA kids. http://www.alyn.org/  There we meet with five different specialists who each checked Eden. The Respiratory doctor who checked her lungs told us the best news of the day, that her lungs are fine and healthy. This was great news because breathing is one of the biggest problems with SMA kids. He said that the fact that her lung aren't damaged is encouraging also that she eats well is a good sign.  Eden has been eating solids since she was 4 months old. She is a good little eater.
    According to the specialists in Alyn Eden will have no speech problems and hopefully no breathing or feeding problems. So it was very encouraging!
They also have a special daycare that has a pick up and drop off service. They are offering us one on one hydrotherapy, physiotherapy and equipment. In a few weeks we have a leg brace fitting and a special corset fitting. This will support her back and help her sit straight.   
    Some days i feel so positive and Eden does so well. Then there are those few days that some  random thing will set of a string of hopelessness . This mostly happens when Eden is asleep or if she is unusually weak. When Eden is awake and happy i almost forget she has SMA. We read a lot of books and sing songs, do our exercises which we make fun and we have a great time. Eden talks more and more every day. She started singing parts of songs and is just so adorable! We have a lot of support from Family, friends and Alyn.
Thanks for being there for us!