Thursday, January 28, 2010

"The OI Dance"

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:

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???

Saturday, January 23, 2010

A story, and some pictures

Molly's favorite show these days is "Charlie and Lola", where the main characters are English. This has allowed Molly to pick up a pretty good English accent.

So at bed tonight, Molly decided that she is going to have a "flying circus" tomorrow. And then, in an english accent said, "and now I will speak in spanish, since everyone will speak spanish at my circus." She continued the rest of our conversation and bed time routine with an adorable English accent, insisting that she was speaking spanish.

I have been horrible about putting up new pictures and video since the move, but I have started to go through them and upload pictures again. I'm putting Molly's pictures up here:

There are some really great videos to upload as well, but I haven't finished going through those yet.

Here are some of the pictures I have uploaded:

From Molly 2010

From Molly 2010

From Molly 2010

From Molly 2010

From Molly 2010

Thursday, January 21, 2010

4 and Still Fragile

I am having a hard time today. Molly fell last night and we're not sure what she has broken, but it seems like it is her right tibia (lower leg - again) and she is complaining of pain in her bottom, which is either her tailbone or a lower spine compression fracture.

She slept in our room and after oxycodone and valium she seemed to sleep well. She was hesitant and was not willing to sit up completely. She has improved throughout the day and has even stood with her walking boot on for a little while. I am always torn as to how to handle things when it is unclear what is hurting her and how significant the pain is. She has a very big pain tolerance and she is also very determined. I guess I should let her do whatever she feels comfortable with, but it is hard not to worry.

We did not take Molly to school today. It was the right decision, but it has made for a very long day. I am now being nagged to the point that I cannot write anymore....

Wednesday, January 13, 2010

Happy Birthday Molly!

Wow!!! Molly is 4! It has been a long and wonderful 4 years. It is wonderful to see how much better things are than we were envisioning when she was first diagnosed. We are so lucky to have her in our lives and very lucky to have friends and family around to provide the support and love that we have needed during the ups and downs - THANK YOU!!

Molly is quite excited about her birthday and was on a bit of a high today anticipating her big day tomorrow. We do not have school on Wednesdays, so we are having her party tomorrow, which will be quite fun. Jim's Mom is in town and has really added to the excitement and celebration.

Molly and Gram have done a room makeover for her bedroom and it looks fabulous!! Molly now has a lavender room and lots to accessories to "pull the look together". Thank goodness Gram is good at this decoration stuff. I am terrible and Molly really seems to care (sorry Molly ;).

She has been doing well, but has me thoroughly baffled. She is doing well, but complaining of pain of her legs and arms. She has started walking independently in the house for short distances and seems fairly stable, which is wonderful. It is hard to know how much to encourage her to do without overdoing it.

She got a new lamp that has a touch base in her room, so for the first time she can turn the lights on and off in her room, which is wonderful. I have realized that I need to focus on what are some realistic goals for her independence and then figure out how to achieve them. I'm sure if I had set a goal for her to be able to turn lights on and off this would have come to mind. Anyone else out there have some other good goals for independence? Someone suggested that I have her bring her own dirty clothes to the laundry room, which is a good one - I would love some more!