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.

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.

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…

Halloween

We had such a wonderful Halloween this year!  Truman was adorable, Scout was fully engaged in candy hunting, the entire family was at our house to celebrate my sister-in-law and my birthdays and the neighborhood was filled with adorable kiddos.  How much more perfect can you get?

Scout was a Autumn Fairy this year.  She got the idea because of the “Fairy Garden” that my sister and mom created out at my parent’s farm this year.  The grandkids each had fairies that represented them and we created different areas with flowers, houses, decorations, etc. for the full fairy world.  Scout was in love with the whole idea and wanted to be a fairy to continue the fun. 

The girls had fairies…so what do you do for a little boy in a fairy garden?

You have Garden Gnomes!  The fairy garden included the Gnome Village for Truman and when I saw this costume I almost fell over!  Is he the cutest thing ever???

My nieces, Chloe and Kennedy, like to help the little kids trick-or-treat (plus it gives them the excuse to dress up and get candy too!)  Cute group, huh?  And the gnome outfit is just killing me!

Truman only made it to about 5 houses before he decided he had enough of the trick-or-treating part of Halloween.  He wanted to keep his costume on though!  I was shocked but he kept that hat and beard on for over an hour!  I was finally the one who took it off.

The rest of the girls went out with Chad and his dad and hit the streets.  They came home almost 2 hours later with a HAUL of candy.  I guess that Scout learned some tricks from her cousins.  She would ask for “candy for her little brother so she could share.”  Hmmm….I don’t think there will be much sharing going on!

Happy Halloween!  I hope everyone had a safe and fun night celebrating. 

Peter, Peter, Pumpkin Eater…

We took our annual trip to the pumpkin patch this year and as always we had a great time.  I love the fact that we have created these type of traditions with our kids.  I have such strong memories of this exact pumpkin patch when I was growing up and now to see my kids running through the fields…well…it is just a great reminder why we live in Lawrence. 

Like the How Tall sign…we have been doing this sign since Scout was only 3 months old! 

They added a new play area this year that the kids loved.  (Again showing the tradition thing Scout was super excited by the new set!  She immediately recognized that it had not been there before.)

Tru loved the tunnel under the hay.  He crawled back and forth over and over.

Truman, as always, had a great time people watching.  I swear that kid is amused by the human race.  He is such a detail guy.  When he gets his hands on something new or is in a new situation he really takes the time to take it all in and look everything over.  He spent about 15 minutes checking out the pumpkin before deciding that was the one for him!

When we got home we started carving.  Truman was hillarious trying to figure out what the heck we were doing.  Scout was the artist this year and designed our pumpkins for us while Mommy and Daddy did the actual carving.  Truman helped clean out the inside of the pumpkin and he liked to squish the goo.

Scout made a Kitty Pumpkin

Truman and the pumpkin had matching grins!

My pumpkin, Scout’s, Truman’s and Chad’s.  Not a bad looking group. 

Another wonderful fall tradition that we now get to share with our little guy...such a joy!

Ren Fest 2010

We took Truman, Scout and Scout’s friend Amber to the Renaissance Festival this year.  I haven’t been since I was in high school so I was a little worried that it wouldn’t be as fun as I remembered.  I was very wrong!  The kids had a blast.  They were the perfect age to really enjoy all of the activities.  Truman had a blast people watching and checking out all of the fun shows.

This was the look on his face pretty much the whole day.  He just laughed at all the crazy people!

What a fun day!  The people are CRAZY but in a fun, harmless way.  I even tried to participate in one of the shows by being hypnotized…didn’t work!  I was up there giving it my all but it was a bunch of hooey.  The kids got a kick out of seeing me on the stage until finally I got tired of hanging there in the uncomfortable seat and stood up and walked off the stage.  I don’t think the hypnotist was too thrilled with my departure.

We will definitely go back next year.  Scout is already planning our trip!

Weeke’s Family Visit

Our good friends from Wisconsin came for a visit over Labor Day Weekend.  Yes…I do realize that was almost 2 months ago.  But I am just now dumping the photos from my camera.  So I found these and had to share!

John, Andy and Chad on my parent’s porch.  John and Chad met when they were in the Madison Scout’s Drum and Bugle Corps and have maintained a strong friendship through the years.  My brother met John when he was in our wedding and they immediately clicked.  These guys are so fun together.

 

Michael, Cristin and Truman.  Cristin. John’s wife, is an amazing lady and we just love her to death.  Their son Michael is two weeks younger than Truman!  He was supposed to be several months younger but he decided to come super early so he and Tru could share a birthday month.  I can’t wait to watch these two boys grow up together and become the best of friends like John and Chad.

Michael showing off his cymbal skills to impress Chad.  Chad was a cymbal player in the Scouts so of course we have a pair. 

John is Truman’s Godfather and we are so blessed that he agreed to play this role in our son’s life.  John is an incredible man and I know he will be a great role model for our little guy.

We had such a fun weekend.  I hate that we live so far away from each other.  They are the only reason I would visit Madison in the winter!  Hopefully we will have a chance to see them again soon.  Miss you guys!