Sunday, January 30, 2011

Are you ready for summer?

Funny thing to be thinking about when we just got buried in snow right?
I was just looking out into the yard and started thinking about how I'd like to make the yard more "Daniel" ready.  I'd love to get a covered sandbox, a heated pool, and a swingset.  Now that would be a backyard that rocked!  So that of course gets me started and checking  out these swingsets

I am determined to get him outside more this summer. We'll have to figure out ways to keep him cool, like the covered sandbox and the pool, but he just loves to swing.  He'd be out there all day if I'd let him.  So many options, its going to take some time to find the right one, then persuading dad to let us get it and getting him to set it all up!!

Ok, I can dream right?!  I better start saving now!

Friday, January 21, 2011


A recent message thread on one of the yahoo groups I belong to had me looking back at videos of Daniel and his earlier years. Ha! that sounds funny since he's only 5.  This one got me teary, but such good memories.
This was his first time in a demo power chair.

He's so small here - pretty good for a kiddo a little less than 2 1/2 yrs old.  Thanks to his awesome therapist - we got his power chair!  Now just need to get a vehicle that can transport it (that's another post~)

Tuesday, January 18, 2011

A Huge Inchstone

I am sure if you have been a follower of this blog for a while, you know how much I adore getting EEG's done on Daniel (insert eye roll).

You can see examples of why I dread these tests here.
We had to have two different tests done in a two week time period of Christmas break. TWO on different days! UGH

Well we went for the EEG the first week. I decided to take a different method with the trip this time.  I explained to Daniel while I was getting him dressed exactly what we were going to do.  I kept saying "remember last time, you cried because you were scared, but mom and dad still stayed with you" and "remember they stick all those wires to your hair and you looked goofy?".  I was just hoping he understood that regardless of how scared he got or upset that we'd still be there.

Usually when we hit the lobby area, Daniel will start with the whimpering and then when they call us back its the hanging on to me for dear life, then full screams when we are getting him undressed.  I JUST HATE IT.  This time was different, no whimpering, no screams.  The technician we had (we've had tons!) was one that we've worked with before and she knows Daniel well.  When we got to the room she said "OK are we going to sit on mom's lap or do you want to lay down on the table and I'll hook you up?"  He opted for sitting on my lap ;) The only rule was he had to sit still.  

So are you ready for this?  HE SAT THERE ON MY LAP and did not move!  No screams, nothing.  He told her the colors of the wires as she was sticking them to his head. 
Red. Stick on wire. Yellow. Stick on wire. Green. Stick on wire. Purple and so on....then we proceeded to watch a movie and he was DONE!  
I was  beaming!  Lonnie was standing in the hallway saying words like "spectacular, awesome, dumbfounded" It was a completely different kiddo!

On another note, Ms. Techie knew I was worried about the results, so she immediately had the doctor who reads the reports look at it before we left because she didn't want me worrying about it over Christmas.  Well during the 15 minutes I was having a heart attack because I kept thinking "OH Chit, she sees something that's why she is talking to the doctor, oh crap, bad news".  In walks the doctor, well he does show POTENTIAL for  an increased risk of having seizures but we don't show any activity.  WHOOPEE!!! 
Daniel will always have the potential, just because of the brain malformation, but we get excited when there aren't any!  YIPPEE!  An excellent day at the hospital.

Week Two:  VEP/ERG  this involved sedation, putting the wires back on Daniel's head & eye lids,  putting goggles on him that have flashing lights inside.  HATE this test too.  So I did the same thing, explained the whole thing to him.  We get there and we see Ms. Techie - she's doing this test too!  Good for us, because Daniel is familiar with her.  She comes out and says that she is going to try  it a bit different this time since Daniel was so good last week.  UGH.  This time she says  no sedation (which I hate sedating him), we are going to try the Adult test. She has the anesthesiologist and doctor on hand if we need to, but she wants to try this way.  So he again sat on my lap, they hooked all the wires up, turned out the lights and he had to follow lights on the TV monitor for 10 minutes with each eye.  HE DID IT.  Nope a peep of protest.  UNFRICKIN' BELIEVABLE!  

As you can tell I am in awe over the whole experience.  By the way, that test came back normal also!!

I'm actually not dreading the next round of tests in 6 months.  Cross your fingers and lets hope it wasn't a fluke.  A Big Milestone for tears (by Daniel or Mom!)

Thursday, January 13, 2011


Daniel with one of his teachers Ms. Andrea

I just added the last one cause I think he's super cute and I love that smile!  He's so proud of himself.

Wednesday, January 12, 2011


Do you ever have one of those days where you just start thinking about
"What if's?" and that just gets you started on thinking "I shoulda's"

That's me the last few days, and it was Lonnie before me...we run in cycles.

I am not really down in the dumps, but it seems like its fast approaching.  I am wondering if I am doing enough?  Should I be doing more? Daniel is making progress, slowly, but there is still progress.  I read other blogs of children with special needs and I begin to question what I am doing.  There are parents that are taking their children  over to China for stem cell treatments, there are parents that have their children in ABR and doing hours of compression-type therapy are home each day, there are parents who are doing hyperbaric treatments.  Then there is ABM therapy which seems to work really well for some kiddos.
There are parents that have their children involved in outside activities, hockey, skiing and things like that.  I don't let Daniel experience those things - whether it be from fear of him getting hurt, not being able to figure out how to do it with him, or just laziness on my part.  I don't know.

Maybe I am feeling like doo-doo because I don't have Daniel in any outside therapies currently because we are in Grand Rapids and he is so tired after school every day at CLC.  He is getting a ton of therapy there, but is it enough?  I always second guess myself.  I scare myself.  That maybe Daniel would be walking right now if I had done things differently.  If I had worked more with him at home, taking him to more sessions of some therapy.  That maybe because of my lack of drive on certain things that I have harmed him by not putting him in some other sort of therapy?

Then there is the school  academics aspect of the whole thing.  Yes he is getting academics at CLC.  But is it enough?  Is he where he should be?  I love CLC, and I can't imagine putting him in the public school system - scares the chit out of me.  Really it does.
But again - am I doing enough with him in this area?

Don't get me wrong, I know I am a good parent to him, I love him with all my heart.  But I always feel like I should be doing more that I am not.  That perhaps I made the wrong decision to put him in this environment for 9 months and didn't keep him in his therapies he was in that he might be further physically?  

I have always thought Daniel  will walk (with a walker unaided).  I always say I am OK even if he doesn't, and I am.  But then why in the back of my head do I continue to think "he'll walk someday".  Does that make me a bad mom?  an unaccepting mom?

Maybe its just emotions running high right now-- being away from everything, seeing other children doing things that we just don't have the opportunity to do either because of where we are or funds.  Just one of those weeks where I feel like I am not doing right by my child. 

For the love of Pete I hope I can shake this mood I'm in.  Its not very productive.

I was going to leave you with more photos of Daniel at school but Blogger is not cooperating right now!

Thursday, January 6, 2011

CLC Report Card

Here are just a few photos of what Daniel is doing at CLC (Conductive Learning Center). We will call it his report card in pictures. I cannot express how happy I am with his progress here.

First set of photos - Daniel is learning to move from one location to another by laying on his back, lifting his hips and pushing back.   You will see from the things in the background (the wicker basket) that he has pushed himself backwards. (YIPEE for movement!)

Flat feet (arms at side - never use to do this!)
Lift &   Push
Tada! (arms up for the hooray!)

 Second set of photos:  Sit to stand (BY HIMSELF!)

Notice the flat tippy toes!

SUCCESS! See how tall he is standing!        

Now for something really really neat....

Stepping without being helped.  Only being spotted! 

How's that for a good report card!!
There are many more photos but I won't bore you with least not right now! :)