Wednesday, September 14, 2011

Hello Long Time Friend

Its been a while eh?

I think when we started this blog for Daniel is was to keep family and friends updated, then it kind of migrated into something that I used for my therapy.  It kept me sane, let me vent when people were not so nice, and kept me in contact with the other SNF (Special Needs Families).  I used it to keep up with Daniel's progress, and to hopefully help other families learn from some of our experiences.

Well in the past year or so, I  think I didn't need the therapy outlet as much, that I learned to just accept things (no not give up, but come to grips) that Daniel is Daniel and I cannot fix everything that people don't accept as 'normal'.  I believe in the last year, that I finally realized learned to say screw those people, that this is normal for us.  That Daniel is perfect the way he is and I am not trying to "fix" but now I am here to help him use his skills to the best of his abilities.  And believe me, he has many skills.

 No, he is not walking yet or talking in the way people consider 'normal'. 
Will he?      

 I don't know.  I don't care.
Do I want him to?      
Sure, who wouldn't want him to?

Will I feel he is less of a person because he doesn't do those things?  
Absolutely not.  He is remarkable in what he can do, and I am very proud of every single thing he does.

Does this mean I've given up?
Nope, I'm just refocused.  I still believe Daniel can do all these things, and he will in his time, when and IF he feels he can.  When I say refocused it doesn't mean that we aren't doing the same things as before, the therapies and such.  We are, but my end goal in not  HE WILL WALK, it is more along the lines of what can we do to aid him in moving, whether it be in a walker, stander, power chair, canes, rolling, crawling.  Physically he is probably going to always have some issues. lets move what.  We'll deal with it.

Daniel talks.  Maybe not how your kiddo talks - I don't care.  He talks so many ways.  Eyes, expressive, pointing, nods, and of course his AAC device (ECO EyePoint).  So we will work on this a lot.

So to catch you up a little bit since I hadn't been needing the self therapy of venting on the blog.  Many things have changed, so I find myself back to writing the blog for therapy.

I'll just give you a brief little list of some of the changes

Daniel is now 6 years old.
We did some hippo therapy and some swimming, which we loved but because of medical issues we can't continue with that.
He started having seizures again, but BIG, SCARY ones. (the Infantile Spasms were indeed scary too .  Who am I kidding? - all types of seizures SUCK!)
He started taking Trileptal in additional to his other seizure medication (Vigabatrin) in hopes to get the seizures under control.
He is not in the public schools, he is considered 'home bound' and is doing home based school.
He still gets his Occupational, Physical and Speech therapy multiple times a week
I am still considered 'the at home mom' although it seems like we're never home.
I still work my little side business of making party crowns, so that keeps me busy in my down time.

I think I'll be updating more, not that anyone is still reading out there, but like I've said it makes me feel better to get my feelings out without taking it out on anyone in person :)  

Here are some photos with fun things we've been doing...


Nadeen said...

Hello Melanie,
it's been a pleasure reading your words. I felt I was reading mine.
let me introduce myslef. My name is Nadeen, i have a three years old boy named "Nemer". He has bilaterial perisylvian polymicrogyria and epilepsy.
At one point Nemer was on 6 different seizure meds and none helped. He is now seizure free thanks to the ketogenic diet.
I share with you all the emotions and feelings abut our boys' abilities and how I used to think that I JUST WANT MY SON TO WALK!! but i reached a conclusion to accept his abilities and gives him the freedom to choose when and what he wants and can do.
I never gave up on therapy and i do it only to improve the quality of his life. I believe in him and no matter his future will look like the most important thing is that i want him to feel happy and loved.
you are such a strong and wondeful mother. it takes lots of courage for you to share your feelings.
I have a blog as well for my son for the same purpose you did your son's blog. you are welcome to check it out :

Liz said...

i have just come across your blog, and just wanted to say yes someone has read your words.

wishing your little boy, and family all the best