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Wednesday, June 10, 2009

Busy Week

First thing I have to say is I have no idea how to respond to comments that I get - I am an idiot sometimes with that kind of stuff. Thanks for all the info. I have been up every chain of command and every tier of social workers you can think of. I am finally making progress with the Senator's office. The med waiver I have applied for and when she turns 3 she can actually be on the list - however long it is. I think that we are stirring up an area where there is a great need in this country and hopefully we will be sucessful in getting some things changed for not only us, but other kids and families like us.

School is out here as of last week and the boys are home. I like it better - even though the house is really crazy. No having to get anyone out the door and force myself up at 6 after only getting to sleep a short time earlier. I can sleep till 8 now. Woohoo! Trying not to fight the grind on any level. Making appointments that work for us and not pushing Megan too much.

We have some new stuff happening - going to Detroit to see a specialist that works with infantile spasms and metabolic issues in the brain. I found him through other blogs and chatgroups from parents who have dealt with stuff like this too. We are slotted for August I think - first available. Cant wait! Have a whole list of genetics that have not been run that can be helpful too in sorting some stuff out. I have been busy doing my research.

Think I found the van style we need - rear entry - full cut so Meg can sit up in the second row between the 2 captains seats and we will still have the option of the bench in the 3rd row if needed. Like I said before - busy week!

Last night I read a book to Meg I have had since she was 1 month old - The Magical Mermaid. I have never been able to read it to her as I thought it would be better for a 4 year old but I thought why not. It gave me mixed emotions. I cried thinking back to when I bought it - I had no idea that she would go through all of this. I cried too thinking about how you take reading a book to your toddler for granted and how I wish I could just do that comforatbly and enjoyably every day with her. Does not mean that I am not going to read to her - still going to. I love it and it makes me feel like there is some sense of normalcy going on.


Anonymous said...

It's sad you have this site but don't let people know how to pray for you.

Terri said...

So sorry that you think it is sad that I have this site. It is a way to keep people who care for us informed since it would be impossible to keep everyone in the loop and besides that it is good for my head to write it down. I don't believe I have told anyone know how to pray for me intentionally. I get asked a lot by people "what should I pray for" so if I said something specific it was because I get asked that question by many.

Colleen said...

just pray!!!

I was just checking yesterday to see if there were any updates...You guys are always in my prayers...prayers that things work out the best way possible!!!

Anonymous said...

..since when does prayer require instruction...blows my mind to think that you call yourself a christian and write such a comment.

Anonymous said...

To anonymous: Why do you read this blog? This site is not a religious debate forum but I am sure you could find one out there. Your posts are antagonistic, argumentative and judgemental and not appropriate in any manner.