The first day Isa went back to school was hard and things didn't go as planned. I stayed with her the first day and quickly realized that she needed someone to assist her full time at school and not just with the toileting.
The first thing that came up was that the school was hoping to have her slide herself onto the toilet from her wheelchair. This just seemed impossible for her since she couldn't put any weight on her feet and she didn't have the sufficient upper body strength to do it. She was going to require being carried onto the toilet and off. Next thing was that there was no one to push her from room to room. While in her own classroom she was able to move well on her own but couldn't manuever from classroom to classroom. The other things were for instance P.E., where she was unable to fully participate. They had her trying to make baskets in a hoop while the other kids did some kicking but there was no one to retrieve the ball for her. If I had not been with her she would not have been able to do anything. My other concern was during recess, would anyone actually stick around past the new "she's in a wheelchair" phase or would she be by herself at lunch. The kindergarten playground is also not set up for wheelchairs so she could not line up with the rest of her class, instead she had to go around where the ramp was available. Unfortunately the school could not provide someone to help her full time and since I am a stay at home mom the choice was pretty obvious.
I have to admit that I did feel a bit guilty about leaving my baby boy with Grandma all day but it was the choice that had to be made. She needed me and if Max has the same surgery I will do the same for him. Max has been a sweetheart through it all, never complaining about all the extra attention Isa needs and fortunately he really enjoys doing art projects all day with Grandma.
It has been two and a half weeks of me going to school and I have to admit, it is a lot of work. I am tired and nothing seems to be getting done at home. However, regardless of how tired I am or the fact that my house seems a bit unkempt, I am very happy with my choice. I feel that I am able to assist my baby girl and she has been more comfortable during this phase.
EYE UPDATE:
We recently went to the doctor to follow up with the outward deviations. He said for her to resume patching again and that at least for now she wouldn't need surgery. I had mixed feelings about this, on one hand I felt relieved that surgery wasn't in her immediate future but on the other hand I felt that we are running around in circles. I feel that we are almost to where we started four years ago. Yes, she hasn't had any problems in her right eye but in her other eye we are back to where we started. I knew very well at the beginning of all this that surgery might need to be repeated and she may not ever be truly cured. However, back then there was just optimism and now I am faced with a big dose of reality :( I know I may be silly about my feelings but I can't help it. I do recognize that however things turn out whether she has surgery six months down the road or never again or patches for three months or for the rest of her life we are still blessed. It's always in the back of my mind that things could be much, much worse. We have another few months until our next appointment.
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