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Tuesday, May 24, 2011

Oh Baby....

Dear Alexander,
I'm struggling a little.  Just a little.  Your seizure meds are a little out of wack.  You are lethargic.  Not an exaggeration.... you are just exhausted.  Last night it was the worst it has been.  You could barely hold you head up to eat a few bites, much less finish an ounce.  Sometimes I feel like a big fake.  Usually I'm ok, but this past week has been a struggle. 

I found a blog written by someone who was still coping with the news of Wolf Hirschhorn Syndrome.  For whatever reason, this post really hit home for me.  I could feel myself slipping back a year ago.. to hearing the news

Also, for whatever reason (again... I have no idea)... I find myself thinking about that stinking 15.32........ sigh.... 
It is probably because of the lethargy.  It is probably because you have gone really far backwards.  Even though I believe in my heart that once we get these meds fixed up, your activity level will increase ~ I can't help but be a little afraid.  It breaks my heart to hear you cry through all activities.... through the pt, and the ot, and eating, and drinking.

I try to think positively: you drank 40 mls tonight.  For those unfamiliar with mls - 30 mls is an ounce.  This is more than you have drunk in 2 months... since this post. Even while I am celebrating that you have drunk that much, my heart breaks that it is still so little....

I also am excited about your seizure dog.  The auction is getting ready to launch June first and I'm ready to get back to the art of sleeping some.  I have also been thinking about what to do if we raise more money than necessary for your seizure dog.  It will be nice to have a little something in the trust for future items.
I've been thinking it would be nice to have some annual thing to do.  There are so many things out there that you could benefit from and our insurance doesn't cover it.   Like the cup you are currently drinking from - that cost $30.  We might be able to purchase some of those things, (like the cup) but the twins would never have anything special for themselves. 

But what I really would like to do is help other people get a seizure dog.  If we created an annual fundraiser, we could donate 1/2 of the proceeds to 4 Paws for Ability - the place we are getting our seizure dog from.  They are the only place that would accept you at your young age and with the possibility that you may never be verbal.  I feel there are other families out there that could benefit and I so want to help them.

So there it is.  My heart is moving in such a direction to begin to look for ways to help other people ~ all the while, I'm thinking about you.  Your struggles are my struggles.  I love you little buddy... but it breaks my heart right now to know you will most likely never be able to read this sweet love letter.


At May 24, 2011 at 4:05 PM , Blogger Kristin said...

Oh Kristen - how I wish - even if only for one- that I lived closer. I would steal you away and shower You with all that you need my dear friend. I pray for Alexander everyday but Today I am praying that you are able to get over this bump in the road without too much heartache. Sending Lots of Love and encouragement your way.

At May 24, 2011 at 4:08 PM , Blogger Wildtree To You With Erin said...

Lots of prayers coming your way! I am praying that the auction goes well and Alexander gets his dog soon!

At May 24, 2011 at 10:25 PM , Anonymous Kisses4Kaylee said...

I read this post and had to laugh a little. You see, the grass truly IS always a little bit greener. I was just recently watching your videos last week of Alexander eating; how straight and upright he is when he sits, and the video where he takes those few, assisted steps and felt...well...sad, to tell you the truth. Happy for Alex, but sad for Kaylee because she has 5 months on the little guys and is not even close to hitting the physical milestones that he already has, so I know how you are feeling about the waves of frustration mixed with hope and fear. I have heard that finding the perfect cocktail of seizure meds can be a real challenge. Kaylee is already on 2 different ones, and she still has small breakthrough seizures from time to time. If you don't mind my asking, what meds is he on? (you can msg me that info). I pray that you figure out what he needs to keep his seizures controlled but without the lethargic side effects.

I also wish that I was crafty or could donate something I make for an auction. We could offer a gift certificate for Flipscript, but I am not sure how that would auction as it already has a monetary value. Let me know your thoughts. xo


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