The Bigger Picture

Where do I begin...

Global developmental delay

18 months

genetic testing

speech therapy 

occupational therapy 

Don't get me wrong I have heard all of these terms before, but not in this order...

As I drove home from work this afternoon in complete silence (other than Brayden in the back seat trying to sing twinkle twinkle little), I reflected on everything the doctor spoke with us about this morning. 

I have feelings of anger, sadness, self guilt...but I can sit here and throw myself this awesome pitty party or I can start seeing the bigger picture. (Everything will work out)

The doctor says to us today...if you have known about all of these delays why haven't you done anything until now...and we went through the whole story of how he was in the public school and we just felt like it wasn't the right place for him, he was only getting speech therapy for 30 minutes a week( not one on one) and that I had tried to get them to give him occupational therapy and they said that he didn't need it and that I was missing 3 hours of work 3 days a week and that it wasn't financially  feesable for us. My job needed me and while I was thankful  that my job understood what I was trying to do for my family, I knew that It wasn't going to work forever. I continue on that we wanted to get him into private therapy for speech and occupational, but it is so expensive, and right now unfortunately we just don't have the funds for it. Her response pissed me off just a little...

"Well all I'm hearing is that they this and they that, you tried and it didn't work...WHY DON'T YOU PUSH BACK AND TRY HARDER." 

Even though it pissed me off...she had a good point...

I told a friend of mine I just wish someone could do all this for us...all the hard stuff, all the paper work that we are about to face...the Medicaid waiver that I  hear is going to be the death of me, but damnit I'm going to prove her wrong and push harder...

We discussed his Apraxia and she said she wasn't ruling it out, but said "we usually don't test children for that until they are 3"...I'm sure I looked at her like she had 3 heads and replied...but he's almost 4 and..she said "NO he is an 18 month old and speech is actually his strong suite right now!!" 

You read that correctly...

We have a 4 year old that is really 1 1/2...it's still a little unreal to stay that!!

On July 28th we will drive to Charlottesville for genetic testing at UVA...we are hoping for good news..

But until then we will start this journey all over again with paper work and going back to the drawing board to try and figure out our finances and therapy for our sweet little man.

She recommended speech therapy at least twice a week and occupational therapy. 

P.S. insurance companies suck as far as coverage...please tell me who I can talk to about this!!

She said to continue him on DHA and said that she backed the studies done and if it was working to continue it. She also suggested doing a dye and preservative free food study of my own for 6 weeks and see if he reaches any new goals. (that will be interesting)

And that about sums up our day...Thank you for reading and if you have any questions or suggestions feel free to ask or tell!!

Remember always look for the bigger picture :)

xoxo

Alana