Sunday, November 21, 2010

Truman’s New Toy

The incredible therapists with tiny-k let Truman borrow a child size walker to see how he did.  He LOVES it.  At first he was a bit overwhelmed by the entire thing and like to just walk around it instead of actually using it to walk.  But this weekend he really got the hang of it and started zooming around! 


I took a little video but you will see at the end that his sister distracted him a bit.  After that point he just crawled over to her and tried to get her to play with him.  The whole point of the walker is to let him choose to use it independently….so I had to give up my video pursuits.

Saturday, November 13, 2010

If I only had a brain…

The good news is that Truman has a brain!

OK…that was a bad joke.  Of course he has a brain!  And it is a beautiful one too.

We got the results from our neurologist finally.  He called us himself…which is one of the things we love about him.  It is also incredibly terrifying when I hear his voice.  Why would the doctor call if it was good news?  Right?

But it was good news…mostly.

His brain has “minor changes” that do not “raise any red flags or give a specific diagnosis.”  He has all of the parts and pieces and there is no evidence of degeneration.  All really great news.  Of course hearing that there are any “changes” makes my skin crawl but with no visual it is easier to to deal with.

The hard part is the thing we have struggled with throughout this entire process…we don’t have an answer.  We know something is wrong but we can’t figure out what it is. 

His neurologist understands our frustration.  Every test that we take we pray for a negative result but with every negative result we are further from understanding what is going on with our son.  He has tested and tested and tested and just can’t find the answer.  He cares enough to call us personally to talk through the next steps and to apologize for not being able to find a diagnosis.

Have you ever had a doctor apologize to you?  Me either.

So we will continue with physical, occupational and speech therapies.  We have an appointment with Cranio-facial in January along with another Swallow Study.  We are also due to go back to Genetics.  Every day we will keep working with him and trying to give him all of the support he needs to get stronger, gain balance, learn words, etc., etc.  In other words—we don’t stop fighting but we don’t know what we are fighting against.

It feels like we are flailing around in the dark just hoping to land a hit.  And it is so hard for people to understand.  I keep hearing “no news is good news…right?”  Well of course!  We do not want ANY of the things we have been testing for to be the diagnosis.  But maybe if we had a diagnosis we would know that we were doing the right things for him.  Or we would be able to prepare for the future.  Not knowing what could happen next is impossible. 

Good news…mostly.

Thursday, November 4, 2010

MRI Tomorrow

We have officially hit the point we were hoping to avoid.  Tru was given until 18 months to walk or we would need to do an MRI to check out his beautiful brain.  Well, here we are at 20 months and still no walking…

Our very blunt neurologist (whom we love) in his French accent told us:
”We need to see if all of the parts of his brain are there.”

Hmmm.  Didn’t ever realize there as a chance that all of the parts wouldn’t be there.  After all he is living, breathing, crawling, babbling, hugging, kissing, splashing, laughing, etc. etc.  It didn’t seem like an option.  But, I guess it is.

The other thing we are looking for is the ratio of grey matter to white matter or something like that.  Apparently by this age the brain should look fully formed.  If you have an MRI any younger it is difficult to see everything because it is all still white and not differentiated.  I guess we can see if it looks “normal” or not. 

He will have to be put completely under because the MRI has to be done completely still.  He is 20 months old and will go under anesthesia for the 3rd time.  It never gets any easier.  The memory of him coming out of anesthesia after the tonsil surgery is still very fresh in my mind…and it is not a pleasant memory. 

We should also be receiving the results of some the genetic testing we did in September fairly soon.  Again—we are keeping our fingers crossed that everything comes back negative.  It is such a weird position to be in.  We are trying so hard to figure out what is going on with him but each time we test we hope to not find an answer. 

The good news is that I have reached a point where I no longer completely freak out every time we are waiting for an answer.  I can put it all in a box on the shelf and not deal with it every second of the day.  Occasionally the box decides to fall off the shelf and hit me the head making me crazed for a few hours.  Typically this happens at night when the house gets quiet enough for me to think.

Here we go again…