The list. Yes, well. I got most of it done. I didn't get our bedroom cleaned up or organized, but the rest of the house was good. I didn't get to wash all the walls or base boards, but it's a work in progress. And my office just about finished. I ran out of hinges and screws to finish my screens, but I picked some up last night. So the office should be finished this weekend. Yay! I already have clients booked in to use it on Monday evening.
Things are up and down for Martin. They hospital in Stanford has investigated one thing after another--cirrhosis, kidney function, platelets, and bone marrow. We thought yesterday that we were heading towards the go ahead for a transplant, but my sister sent out a message earlier today that said not so good news coming. We don't know yet what that means. It's so frustrating.
Bubby is not making a lot of progress at the moment. He doesn't like to wear his robot ear, but we keep trying. He's not talking a lot more, but he's using the words he has. And he is sleeping better. Praise God! We start Occupational Therapy again next month and we are waiting on an appt with the pedi--should be next month. I just feel like we need some help with the sleep issue.
The Occupational Therapist sent out the test for Sensory Integration. He scores Definitely Different (to 98% of his peers) in all but two areas. I try not worry about his progress or where he will be next year or in five years. But sometimes it sneaks up on me. He is such a sweet boy and so loving. He has so much personality. I long for the days when I could dream about his growing up to be a famous rugby player or a helicopter pilot. Now I dream about him being able to talk and to be independent at some point in his life. A little bit tired of well meaning people telling me, "oh, he'll catch up eventually."
We've been approved for care support through the local agency that processes that. It means we get 28 days a year of paid care support. It's not a wage pay, but is enough to get someone to come in and help. We are planning to use it for 4 hours every Sunday--so that either the person stays home with Ian if he is unwell or goes with us to church and helps manage him there. That will leaves us with 6 other half days or 3 whole days to use throughout the year is we need time off. That is a huge blessing. They will also help us work with the other disability group so that we can make a plan for integrating him into school--either at home or in a school.
As much as I hate the thought of it--we are considering sending Cupcake to school next year. She is so bright and so social. We think she might really thrive with a year to herself in school. We shall see. Our school of choice is a lovely little Catholic school here, but they have quite a waiting list. We aren't sure we could get in. I really want to homeschool, but not sure if it will work logistically. Maybe I should go back to not working at all--so that I have more time to do things like homeschool everyone. Or maybe I need to realize that I can't be all things to all people--even my children.
Things are up and down for Martin. They hospital in Stanford has investigated one thing after another--cirrhosis, kidney function, platelets, and bone marrow. We thought yesterday that we were heading towards the go ahead for a transplant, but my sister sent out a message earlier today that said not so good news coming. We don't know yet what that means. It's so frustrating.
Bubby is not making a lot of progress at the moment. He doesn't like to wear his robot ear, but we keep trying. He's not talking a lot more, but he's using the words he has. And he is sleeping better. Praise God! We start Occupational Therapy again next month and we are waiting on an appt with the pedi--should be next month. I just feel like we need some help with the sleep issue.
The Occupational Therapist sent out the test for Sensory Integration. He scores Definitely Different (to 98% of his peers) in all but two areas. I try not worry about his progress or where he will be next year or in five years. But sometimes it sneaks up on me. He is such a sweet boy and so loving. He has so much personality. I long for the days when I could dream about his growing up to be a famous rugby player or a helicopter pilot. Now I dream about him being able to talk and to be independent at some point in his life. A little bit tired of well meaning people telling me, "oh, he'll catch up eventually."
We've been approved for care support through the local agency that processes that. It means we get 28 days a year of paid care support. It's not a wage pay, but is enough to get someone to come in and help. We are planning to use it for 4 hours every Sunday--so that either the person stays home with Ian if he is unwell or goes with us to church and helps manage him there. That will leaves us with 6 other half days or 3 whole days to use throughout the year is we need time off. That is a huge blessing. They will also help us work with the other disability group so that we can make a plan for integrating him into school--either at home or in a school.
As much as I hate the thought of it--we are considering sending Cupcake to school next year. She is so bright and so social. We think she might really thrive with a year to herself in school. We shall see. Our school of choice is a lovely little Catholic school here, but they have quite a waiting list. We aren't sure we could get in. I really want to homeschool, but not sure if it will work logistically. Maybe I should go back to not working at all--so that I have more time to do things like homeschool everyone. Or maybe I need to realize that I can't be all things to all people--even my children.
It's taken several years and experience for me to really know what I wanted. Sometimes it's just all through trial and error. My kids have been in school and homeschooled. I think you'll figure it out as time goes on. ;) What works for one person does not always work for another so don't let anyone pressure you.
ReplyDeleteHow neat that you have got some care approved. It will certainly help you cope a bit.
ReplyDeleteOh he'll catch up eventually... yep I can see how that would annoy you!
My Mother used to call our Griffin a lazy boy... because he did not want to write or read or paint picutures... now she understands it is because he has Dyslexia and Dysgraphia. Some people just don't understand and try to brush it off.
I am sure your wee girl will LOVE school! Most kids do... it's fun and they get to meet lots of other kids and do stuff they don't do at home.