This came from a newsletter today from Jace's intensive program, I love it, perfect timing!
In this moment I accept that I have been given care of a very special person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need no more than the fact that what I do has value.
With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.
I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.
I open myself up to the possibility of joy, of fulfillment, and God's grace.
I accept that, in this moment, it is all I can do.
"As a parent of a child with special needs we need to enjoy our kids for who they are not for who they could have been"
September 27, 2010
September 16, 2010
School News and Hart Walker Update
Exciting happenings for Jace at school this year. He is now in his stander 4 days a week at school during classroom time and thanks to having his own one on one assistant, he will be able to be more involved in the classroom this year. His wonderful school team has restructured his schedule so that he is more involved in the classroom than last year. He also has been observing his teachers hands and fingers while she counts and sings the goodbye song. She noticed that he is looking at his hands and trying to do the same. We love this! He wants to participate and is trying to get his body to cooperate, I am excited to see him progress this year.
The unfortunate news is his hart walker was denied by his secondary insurance as they felt he could not functionally propel the hart walker. I will be appealing this decision but he does go back to intensive therapy in just two months...it may take a little longer to get him this equipment than I would like but I am completely optimistic that he will have one within 6 months.
The unfortunate news is his hart walker was denied by his secondary insurance as they felt he could not functionally propel the hart walker. I will be appealing this decision but he does go back to intensive therapy in just two months...it may take a little longer to get him this equipment than I would like but I am completely optimistic that he will have one within 6 months.
September 1, 2010
Progress at home
Since our last day at intensive, we have tried to make a schedule at home to keep up Jace's strength and skills. I am happy to say that he just tolerated 45 minutes in his stander this morning, while watching Handy Manny and playing with his zhu zhu pet, Nugget.
In the hart walker, he has not progressed as much as I would like for him. He prefers it when I sing to him and he stomps his feet when we do "if you're happy and you know it". I am going to try and take him in the garage soon and see if that surface is more helpful. We are hoping to hear soon if insurance will approve buying his very own hart walker. Hopefully, we met the criteria, which was consecutive steps without assistance.
As far as sit ups go, we do pretty good on most of them, except on the peanut ball. The difficulty there is getting his arms to stay straight, but equipment to help this is supposed to be on the way!
A big thanks to his Grammy Jan for making us weighted bags, just like at therapy, for him to practice "be still" for 30 minutes. They are wonderful, and even our home therapist has commented on how great they are. We are very lucky to have her do so many wonderful things.
Jace continues to thrive, even impressing us with his reaction to eating solids. He does best in his high chair with dimmed lights and a calm household. His favorites seem to be, anything mango flavored (esp. peach mango yogurt); pears; and sweet potatoes. Everything he is fed is thickened to help him to better manage his foods. I vary it between thick it and wheat and honey cereal. He seems to prefer the foods I warm up. Next on our list, is trying a thick soup.
In the hart walker, he has not progressed as much as I would like for him. He prefers it when I sing to him and he stomps his feet when we do "if you're happy and you know it". I am going to try and take him in the garage soon and see if that surface is more helpful. We are hoping to hear soon if insurance will approve buying his very own hart walker. Hopefully, we met the criteria, which was consecutive steps without assistance.
As far as sit ups go, we do pretty good on most of them, except on the peanut ball. The difficulty there is getting his arms to stay straight, but equipment to help this is supposed to be on the way!
A big thanks to his Grammy Jan for making us weighted bags, just like at therapy, for him to practice "be still" for 30 minutes. They are wonderful, and even our home therapist has commented on how great they are. We are very lucky to have her do so many wonderful things.
Jace continues to thrive, even impressing us with his reaction to eating solids. He does best in his high chair with dimmed lights and a calm household. His favorites seem to be, anything mango flavored (esp. peach mango yogurt); pears; and sweet potatoes. Everything he is fed is thickened to help him to better manage his foods. I vary it between thick it and wheat and honey cereal. He seems to prefer the foods I warm up. Next on our list, is trying a thick soup.
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