Molly has recovered well from her fall last week. She is complaining of pain in her bottom, but not very often and she is able to walk (with her walker), so we are thinking things are on the mend. We have determined that all of the late nights and fussy behavior over the past few weeks has been an increasing problem with constipation - so nice to finally have an answer. We have been using miralax every morning in chocolate milk, which Molly is loving, and also increasing our "moving foods": dried apricots, fresh mango, blueberries and juice. She is much happier and bedtime has been much more manageable since we figured out what has been going on.
She fell today and banged her mouth against the table. Her lips are red and a little swollen, but her bones seem to be doing OK, which is a huge relief.
I am feeling more than a little overburdened and we are now beginning to work to find some help to make life a bit more manageable. Molly is 100% dependent on me for almost everything she does and that is not allowing me to do basic daily duties and impossible to get us settled into our new house and work on getting Molly the services and devices she needs to improve her mobility and independence. We are hoping to have an OT (occupational therapist) come and help. OT's help with fine motor skills and daily living activities. We ran out of our allotted visits in the fall and have really been missing having an OT for her. We are also "impatiently waiting" for Molly's hot tub to arrive.
I have come up with a new charity idea, which I have named "Habitat for Someone" and have sent the following email to the Ellen Degeneres Show (please feel free to email Ellen with my idea as well):
Dear Ellen and All,
My name is Sarah and my daughter, Molly, is 4 and has Osteogenesis Imperfecta or Brittle Bones. Her blog is: http://mollysullivan.blogspot.com.
What do you think about starting a Habitat for "Fill in the blank" rather than Habitat for Humanity segment? This would involve utilizing local volunteers to improve a home for a child/family/person that has a physical disability. We have been in need of some home adaptations and are working on them when our finances allow. I know that there are far too many families in this same situation that could use local support and help to adapt their home for the needs of those living there. We have been fortunate enough to move into a ranch so that our daughter can get to her room independently - a luxury so many others in our situation do not have. We are still struggling to find the time an resources to do what Molly needs as quickly as we would like. I would love it if you could help me to spear head an effort to get the resources to families like ours that have a need, especially for a child that could so easily be resolved with a weekend or two of volunteer hours.
I would be more than happy to do anything necessary to help create this organization and am confident that with the exposure of your show that this could be come a wonderful national organization to fill a very significant need - maybe Ty Pennington could even help???
2 comments:
Glad to hear that Molly is on the mend and doing well! Yikes, don't those close calls stop your heart! Sonya slipped on a sheet of drawing paper today as she was standing up at the computer desk chair (which swivels). I almost had a heart attack, but she went down gracefully and didn't break! I love, love, love the idea for the Ellen show! Ty would be awesome since he has already had experience with many disabilities including the Grys family! My fingers are crossed for this to become a big hit! :)
Great idea!!! Good luck...I hope you hear from her and she gets on the band wagon!!! Keep us posted!!
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