Thursday, December 19, 2013

Merry Christmas to me!

Last week, Micah was assessed by a specialist that deals with reflex integration.  (Let me just remind you that I am no medical professional.  I feel like I need to attend medical school just to keep up a working knowledge of all that is discussed at these appointments).  Apparently, Micah has retained most of the reflexes that babies have.  (I'm still learning about what these I can't really explain this in detail).  These reflexes should integrate by age 1 and make way for a higher level of development to take place.  But, if they stick around they inhibit things like sensing, perceiving, listening, talking, playing, riding a bike, drawing, reading, writing, catching a ball, and maintaining balance (all of which are issues for Micah).  The appointment went just okay.  Micah had a hard time...I think he knows that something is not right with him and he just kept getting frustrated.  But she was able to get the information that she needed.

Today I met with her to review the results.  Again, all of the information was pretty overwhelming and I would do such a disservice to the field to even try to explain it.  But, for the first time I felt as if we understood Micah!  Everything she said made so much sense.  Even more than that was the fact that there is a program that works with kids like Micah!  It will take a while (18-24 months) and it requires us to do specific exercises every day, but she said that we should see small improvements pretty quickly.  We were able to talk about some of the issues that we are really struggling with (such as sleep/startle issues) and she actually had explanations!  We've felt so lonely for such a long time because everyone just seemed "puzzled" by Micah.  So, to say that I was excited and a little bit giddy is an understatement.  I realize that we have a lot of work and more frustration ahead of us...but to hear that there could be a reason and a treatment is just the most amazing thing ever.  Merry Christmas to me...

Until the next time :-), C

P.S. Stay tuned to hear about how our little family has been laying hands on each other and praying together...and the answers to prayer that we are seeing :).

Wednesday, December 4, 2013

Quick update

Some people think facebook is dumb...a waste of time...a place where people share too much information.  I think all of those people are poo heads.  I get a ton of encouragement and prayer support from sharing things on facebook.  And trust me...I don't share the half of it...there is plenty that I keep to myself and my close support circle.  All of that to say...thank you, readers for praying and texting me with your encouragement.  It means the world to me...for real.

Our appointment today was anticlimactic.  The doc isn't sure whether or not the braces will help Micah.  And I don't feel like he really got a chance to see and understand Micah.  So I said "please give them to us anyway...please...and thank you."  Micah got to choose the print...they will have school buses and traffic lights on them.  Don't buses are cool.  And the fact that he offered his feelings on the matter is even cooler.  I would've let him pick purple unicorns and bunnies if he wanted them just because I love hearing him talk.  (Ok...perhaps that is going too far...but you get the picture).  Micah did pretty well at the appointment.  Key factor is LET HIM HAVE THE iPAD.  Quit overthinking things and just spoil him a little.  Who cares...

I feel like I learn something new everyday.  Thanks friends.  Hey...did you know that we like hanging out with friends?  Let's get together soon!  We are craving community, so come on over.

Until the next time :-), C

PS. Here's a picture of a school bus to remind you of how cool they are.

Tuesday, December 3, 2013

just some ramblings...

Tomorrow I am taking Micah to see a pediatric doctor of orthotics.  Perhaps there is a fancier name...but that's all the fancy I can handle for now.  He is going to be assessed for some leg/foot braces.  I'm actually a little bit excited. I feel like we are doing some things that can really help him after a year of wondering, watching, and experimenting.  Please pray for him to have a successful appointment and that we get what we need.

I've also just completed the process/paperwork for a few different funding sources to help us with Micah's medical bills.  I have no idea how everything will turn out...but would you please pray that they will be successful?  I don't have much energy or brain power these days to do much...but I did it!

We had an IEP meeting with Micah's team at preschool last week.  Can I just say once more how much I love them?  They are amazing...I will never be able to say enough for how much they've helped us and cared for my son.  Anyway, one of the things that kept coming up was Micah's inconsistent progress.  He's making a tiny little bit of progress...but it tends to be great one day and non existent on the next day.  For some reason, in those meetings, I tend to think of Micah from a clinical viewpoint.   But, this particular day we all kinda realized that Micah just has really good days where he can jump on a trampoline and jibber jabber a mile a minute.  Then he has days where he just falls out of his chair for no reason.  It's's's frustrating.  But we all talked about how hard it must be for him to know that sometimes he can jump and other times he just can't make it happen.  It breaks my heart to think of what he must feel sometimes.  I put myself in his shoes and realized how much strength he has.  I really don't give him enough credit.  Other times I think that I'm just being too emotional.

  I came across this little narrative yesterday on facebook:

I read this and my first thought was..."that's so cool...I can't imagine how that must feel...I want to salute my friends who have a child with special needs..."  Then I shared it...not even thinking twice.  Then I read it again...
That's totally me...(not that I'm asking for you to salute me).  I'm one of the moms that has been waiting for Micah to run without tell me what he tell me who he is and what he feels.  I've wanted so badly to have playdates...but they tend to end in tantrums.  We have so many bad days...and some good ones.  And child's best friends are Ms Mindy, Ms Holly, Ms Sandy, Ms Jan, and Ms Linda...he doesn't really name anyone else when we ask him.  I'm the mom that cries at conferences and doctor's offices...I'm the one that feels a knife in her heart when a 2 year old punk asks me what's wrong with my 4 year old (actually he was a sweet little boy that was just curious as to why Micah kept falling).  For some reason "special needs mom" still just doesn't resonate right away. I'm still learning to that's just hard sometimes.  

God must love me a lot to give me this dude:

And lets not forget my little snug-a-bug who requires everyone to take a turn singing at the dinner table and who is never void of laughs:

Until the next time :-), C