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Showing posts from January, 2013

A new'er' normal....

So the other day I got a post card in the mail from Willow's neurosurgeon - time for your follow up visit, please call us to schedule your appointment!  So I call, and don't hear anything for two days.  I was going to call back to day, and instead got out of work to a voicemail from Helen DeVos Children's hospital - Dr. Foody has ordered a sedated MRI, so we need to schedule that. Oh.... my heart sank.  I know nothing is wrong, and she is doing great, but oh.... So, this is our newest normal - a scheduled MRI for the follow up visit.  I know why they need it and all, but oh....  
When your child has to go under sedation, and has already gone under so many times that it no longer works so they keep propofol on hand so as to instantly knock her out if she wakes up, it kind of sucks when we have to do this. But this indeed will be our new'er' normal, and her appointment is set for March 6th, at 8:30 am arrival time. 

She also has scheduled for the month of February …

Off the cuff

Well, we had a fun weekend that was one of those off the cuff type of deals.  You see when I went into work Friday afternoon... I believed that our weekend was just as any other typical, no plans style of weekend that we have been finding ourselves with since the holidays are over - the kind where the kids remind you every five minutes that they are BORED!

Instead I got home from work to be told by Evan that he had a birthday party to go to the next day and he was super excited about it, only I didn't recall ever getting an invite... So, I send a message to this friends mom on Facebook and low and behold the invite did get lost!  So now plans have changed a bit....

My Saturday starts with taking Jon to GRCC to his ethics class, then I take the kids to Once Upon a Child to take advantage of their 'fill a bag for $15.00 sale' and boy did I ever! I got all four kids a few things and boots for Willow so she could play outside as well, and only spent $28.00! I was excited :)

Random thoughts

Hello my friends!  Since the last post we have had Willow's speech evaluated.  As we suspected, she is delayed in expressive speech - meaning she speaks as if she is a 1 year, 5 month old child. Her receptive or understanding of speech though is - get this - at a 3 year 2 month old level! Yup that is right, my baby who was born 'without a brain' (really it was just horribly squished against the skull) understands what you tell her at a level above her age! Yes we are very proud parents :)  And that will be the last time you hear me gloat about it, but really it is cool isn't it?

Let me get off my soapbox now...

Recently for the PHF I have been able to secure a location for a support group meeting and that has been awesome! I am really looking forward to being able to meet other people who are local and offer any help that I can for them, a friend, an ear to listen to them when needed or whatever I can do.  I am also setting up a restaurant fundraiser for February, so …

New Year - New Blog

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I did it again, I decided to do a redesign of the blog.  I hope you all like and enjoy it.  I am going to try to post a lot more often (I know I always say that and it lasts for a bit and then all of a sudden life takes over). Well I don't like to make resolutions as really if you want to make a change for yourself you should and can do it at any time of the year.  Plus anytime I do make a resolution well see above - I start out great and then just fickle away. LOL  But I am going to put forth a great effort to really stick to this.

The blog will still be called Willow's Wishes, but I am going to post stories about all kinds of things - my thoughts for the day, something that caught my attention at church, how things are going with all the kids in general (I have so many stories to share already), things that I will be doing with the PHF this year.  After all, Willow's Wishes do not just revolve around her; she has taught us so much in her last 2 years of life, that I real…