Faith...

*Maddie in waiting room yesterday

So....this is one reason I started this blog...the need to vent and share my frustrations along with Maddie's successes. Unfortunately, right now I am frustrated and find myself once again exhausted with information...or I could say lack there of. Ill explain:

First of all we had one hell of a day yesterday as we left for Boston at 3:15am due to my OCD issues and not wanting to sleep on dirty hotel sheets. Burlington got a record 32 inches of snow from this snow storm so I wanted to leave early and get there 1 hour early to get Maddie comfortable with the office since she freaks every time we go. Needless to say, it took over 6 hours to get there because of an accident 30 min out of Peabody and we missed the apt. Luckily Dr. Robbins said he would see Maddie during his lunch so I was relieved after such a long drive.

We waited in the waiting room for a few hours and Maddie was great! Besides licking every corner of the office, floor, walls, other people's coats, she really was super just playing. Her eyes were perfect with only a few episodes here and there of rolling and tearing. I really wanted Dr. Robbins to see her when she had good eyes as he has never seen them good...

Unfortunately as soon as she walked into his office, it was all over. She lost it once again...eyes were bad, rolling, blinking, not looking up. She was a nightmare and he was barely able to look at her. She wouldn't stand and it did not matter what I did. I even brought a lollipop as she never gets these and I thought for sure this would help divert her....nope. Anyway after her episode she almost fell asleep in her stroller so I could talk to the neurologist about some things.

Unfortunately answers we did not get...

Here is what may be a big possibility... Something called Episodic Ataxia type 2 with Paroxysmal Tonic Upgaze...These are 2 different things and can explain more in another post when I have a bit more energy...Bottom line, they don't just know...yet.

I kept hoping he would agree for a 2nd opinion for another pediatric eye doc...But he said he does not agree, and does not think it is an ocular problem but is neurological. He said that sometimes kids get random childhood tics that go away but he is fairly certain there is an underline reason for this and does not believe it is just benign...I found myself having those Ally Mcbeal moments where I jump out of my body, ring his neck and say, "Then figure out what it is already so you can fix it!!!!" I know it is not that simple. I just don't understand why no one has seen this before. He said he HAS seen something similar with diseases (very bad ones) that Maddie has been tested for and DOESN'T have...

I just find myself thinking that it could be as simple as an eye issue...I seriously feel like somehow an eye doctor would have to have seen this before...I guess I am really just hoping and have to have some faith that Maddie will grow up to be as healthy as her best friend and this will all be in the past one day. It just feels so far and these are the times I get so frustrated.

Another part that was rough for me was when I saw another little toddler who was 1 month younger than Maddie. Her doctor came out and sat down with her Mom and I could hear them discussing the toddler getting hearing aids. As the doc and mom were talking, Maddie was looking (and trying to lick) the little girl. The other toddler was pointing at Maddie and saying "baby" "baby" and pointed to the truck and said, "twuck"...Her mother said that the toddler says over 20 words despite her hearing problems! What is so frustrating is that I can not even get Maddie to REPEAT me saying the word ball...or truck...or baby...or...well here it is... I always get so excited about Maddie's progress and then I see her around another child her age and it all kind of kicks reality into gear. Don't get me wrong, Maddie has moved mountains in the last year and I would never say I wasn't proud of her for that. I just get really frustrated when I think about what she can not do...I shouldn't think like that but I do sometimes.

I am not that concerned about her language as she is still quite young. I just go through this frustration sometimes when I see other kids her age doing a lot more. And of course parents always like to brag about what their kids do...as do I...but I never realized how difficult it could be for the other parent to hear the bragging until now. Another life's lesson learned.

Maddie is so happy to be home, but by the time I picked her up from daycare today she had fallen apart and was a wreck. Getting back into routine after being on vacation has not proved to be easy for any of us!