Bubbles and Braces

This updated post is just for.......

YOU!!

We have always known that Jace loves bubbles but now he can clearly vocalize it even BETTER!

For fun here is a video of Jace playing with bubbles back in November 2010

compared to now - he surprised me with how CLEAR he said Bubbles!!

He saw the bubbles on top of the fridge and asked for them. I have not taken them out to play with in months. I was suprised when he asked for them but even more surprised by that reaction in the video!

BUBBLES!!!!! :)

A couple days later we got him to say More Bubbles....he had said it so clear right before we decided to record it so this attempt was not as good.

We had Jace fitted for braces - they are not anything like what you see in Forest Gump or remember hearing your grandma talking about with metal going from the feet up to the hips!

We are getting these to help prevent the in toeing and the flat foot he has. We would not be so concerned by this but the toes turning in gets worse during and shortly after he has a seizure. Since part of it is neurological we want to help build up the muscles to stop any permanent odd shaping of his legs.

The main issue is that his ankles are VERY flexible. He is hypotonic in his ankles. That explains why I could NEVER get boots on him! LOL His ankles are like mush. They hold him up but they are not in that "ready to take off" position so there is no stiffness and tone to his ankles. I know they are strong to carry weight like that around but the tone isn't what it should be.

Drawing while waiting for the Orthotist

They will look like this.....

And we are getting his with Farm Friends on it - this is what the pattern looks like:

I thought the farm friends were perfect for Jace :)

With the braces, his PT suggested we get shoes like the Buzz shoes he has now but with laces.

She said they need to be snug and able to tight all the way down the foot.

I found a GREAT deal on Amazon for his new shoes - he looks pretty cute in these too!

The past weekend JB took Jace to Lexington and I got to stay home.

It was refreshing but MAN did I miss my loves! Friday night I had a girls night in with Lisa and Patti. I tried my HARDEST to sleep in on Saturday but only slept until 7am.

Later that day I attended a surprise Bridal shower for Ranjita.

Sunday I was able to sleep in until 9 am! Now THAT felt GREAT! :)

For the Bridal shower I etched a pitcher. I practiced on one of my own Pyrex Dishes.

Not bad but I quickly learned I had to leave the Etching cream on MUCH longer than just 5 minutes like the bottles say for instructions.

Being able to learn from that I was able to get Ranjita's gift done right!

I etched R&R on the pitcher for Ranjita and Ravi.

I have another project I am eager to share but I have to wait until after I give the gift - I can't spoil it on here!

Monday Jace and I had a follow up appt with the geneticist at the TSC Clinic.

I was a bit confused why we still needed to see her since our genes won't change :)

The main reason was that last year when we came in to see her and the neurologist in the same visit Jace was admitted right into the hospital from the appointment last July. The Geneticist never really had a chance to meet with us and discuss her findings in depth. The next she will need to see Jace is going to be when he is a teen - unless we particiapte in studies and trials.

I am so glad we don't have to go back there for a while. An appt with the geneticist isn't like your pediatrician. She takes her time with you - answers any and ALL questions - so we were waiting for a LONG time. Keeping a 2 year old occupied and sane in an 8x8 room with no toys and only 3 books (all paper books) is NO fun! Plus it was cutting into lunch and nap time.....talk about a cranky kid!





BEFORE he got too antsy and had enough with the books

Jace keeps surprising us with words.

At the appointment he was in the way so I was telling him "Excuse Me" and he repeated it! I caught him saying it later but again it was not as good as the first time he said it.

He just makes me more and more proud everyday! :)

I had more surpirses yesterday - on the way home he was telling me a lot of animal sounds I have not been able to get him to say without having to repeat after me. This time I got to repeat after HIM! :)

I may seem very silly for being so excited about Jace talking and picking up more words but I take each new word and skill as a blessing! A blessing upon a blessing! Just a year ago our baby boy stopped saying Dada.....stopped laughing.....and well stopped really doing much of anything he should have been at that age.

I just looking back at the scary episodes I have on You Tube I recorded for his doctors and I will NEVER forget that fear I had in my body. I will never forget how it felt to think our child we deteriorating from the inside of his mind out. As scary as that all was I have to admit, Jace and the issues we've faced with and for him are the reason we walk even closer with God. A little boy barely one years old did that!

God has great plans for that little boy.

As much progress as Jace has made we still appreciate all the prayers. We still see seizures too often and we still worry everyday praying he continues to progress as he is!

We pray that God touches his little body and heals him from

the tip top of his head down to the end of his tiny toes!

AMEN!

Well before I get too deep and start crying I am going to finish this up and head on to bed!

Jace said Catch Ya Later....its Chill time!