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Hey...........

Posted by on Feb. 2, 2013 at 11:12 PM
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Sorry I have been MIA. Holidays came and got really busy. After the holidays a friend came  to me wanting to start fundraising for us for Tyler's medical bills and stuff. So we started stuff and I have been busy with that. After starting an online fundraising page, I was contacted by an organization who trains service dogs and they wanted to train a seizure response dog for Tyler and we got a great donation towards it so we decided to take advantage of teh opportunity. So we have been working hard on fundraising for it. They have a dog for Tyler and he name is Zoey. We were supposed to get her in October but her training is going so well, we may be able to get her early as long as we pay her off asap. So that is the goal now. And then in a month or 2 we are supposed to be flying to Cincinnati for specialized testing for Tyler. 

We also saw a genetecist in December. We know our dr's have been suspecting a mitochondrial disease being his underlying diagnosis and it would explain all of his health issues. Well, the genetcists at our hospital seem to refuse to speak about mito. Well, at our appointment, all she talked about was mito. I coudln't get any other disease possibilities out of her and she staretd us on the meds used for mito. We should be getting our first set of DNA results in this next week and the second set in a couple weeks from now. Very nervous but the drs decided they will treat Tyler as a mito patient until they can prove otherwise, so I dunno. I have been happier on one side because we seem to have an answer which helps a lot with his care and treatment decisions, but crying because the disease is horrible and at the end of teh day, will most likely kill him. Ugh.


So that is what I have been up to. I have missed you all here.  

by on Feb. 2, 2013 at 11:12 PM
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Replies (1-7):
jamielynnef2
by Butterfly Mahi on Feb. 3, 2013 at 12:39 PM
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(((Hugs))) we've missed you in here! We figured you got busy with your lil man :-).
How exciting about the service dog! I love the name zoey :-) I hope that everything is going well with the fundraisers :-)

My heart goes out to you mama, to finally have an answer,but to have that for an answer .....you and Tyler are in my thoughts and prayers.
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bmw29
by Spitfire_Bobbie on Feb. 3, 2013 at 1:01 PM
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I'm so happy he gets a service dog and I hope that comes through very soon. As for the rest of it I can understand your mixed feelings on that. You have a strong family and I think that makes a huge differance in the odds. :) I'll keep you all in my prayers.

Mipsy
by on Feb. 3, 2013 at 5:34 PM
1 mom liked this

<3 thanks gals, I really have missed you all!

taKENheart
by Heatherly on Feb. 3, 2013 at 8:09 PM

 We so missed you in here! I tried not to think that there was something serious going on and thought you were just busy taking care of Tyler.  A few times I wanted to PM you just to ask but I didn't want to intrude :(
I think it's wonderful that you are going to be able to get a service dog :) and further testing.
He is an amazing young man and every single time you posted pics I could see his amazing smile.  He is such a trooper and his smiles melt my heart.  I wish you the best and all the blessings in the world. 
We are always here for you so don't forget that.  Hugs to you both!

Sassy762
by on Feb. 4, 2013 at 2:44 AM
1 mom liked this

Well its about time, lol

We missed you and no more MIA's without a post letting us know, lol

Mipsy
by on Feb. 4, 2013 at 10:21 AM
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*hugs* You could have PM'ed me, I am fine with that :) I have just been busy with my little guy. Mostly fundraising. But we are making it it seems!

Quoting taKENheart:

 We so missed you in here! I tried not to think that there was something serious going on and thought you were just busy taking care of Tyler.  A few times I wanted to PM you just to ask but I didn't want to intrude :(
I think it's wonderful that you are going to be able to get a service dog :) and further testing.
He is an amazing young man and every single time you posted pics I could see his amazing smile.  He is such a trooper and his smiles melt my heart.  I wish you the best and all the blessings in the world. 
We are always here for you so don't forget that.  Hugs to you both!


Mipsy
by on Feb. 4, 2013 at 10:21 AM
1 mom liked this

LOL! I missed you sassafrass!

Quoting Sassy762:

Well its about time, lol

We missed you and no more MIA's without a post letting us know, lol


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