Sunday, January 17, 2010

Days go so fast!

Wow, it seems like it was just Wednesday and we were bring Gracie to the RMH. It's already Sunday, and after our visit to ophthalmology tomorrow, we will be heading back to Horseheads!! It is so exciting. I absolutely can NOT wait to sleep in my OWN bed, and for Gracie to get back to her bed and room.

The days since leaving the hospital have been busy and EXHAUSTING. We are really only getting started in this journey. At the hospital, there was always someone there, to answer a question, check her neurological status, even just play with her for a few minutes. No we are on our own and it IS hard, I won't lie. She has a myriad of challenges to overcome, and sometimes it does get overwhelming.

Her appointment with the neurosurgeon went well. He basically just looked her over and commented on how far she's come in 8 weeks. We will have to go back to him again in six months. Tomorrow, we have that dreaded ophthalmology appointment. The last time they saw her, they dilated her eyes. My poor girl was in agony. This was back when she was still completely unable to speak, so all she could do was hold her head and cry. It was extremely heartbreaking. I am hopeful the doctor will not need to do that again tomorrow, but he probably will. We have a few issues to discuss with this doctor as well. Bright lights and sunshine bother her immensely. She sometimes will not be able to see objects that are pretty much right in front of her. \There is also a chance that the nerves in her eyes were affected by the stroke. When she gets really tired, her gaze averts up and to the right. If it is a nerve problem, we will have to start doing eye exercises as well, LOL.

Tuesday, we have an appointment with her primary pediatrician. I am hopeful to be able to get some kind of answer on the potty issue. She is doing very well staying dry, so long as I make sure to take her every two hours. She doesn't seem to feel the muscles at all, she doesnt even know she's going unless she hears it. HMMM...MORE EXERCISES, maybe? Poor kid, she ought to be the most exercised child in history. Wednesday, someone will be coming to out house to setup all of her therapies. Please pray that they are able to give her what she needs and as often as she needs it. We do not want her to lose any of this ground that she has gained in the past 6 weeks.
Pictures later!

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