Monday, January 16, 2012

NED - Keep the good news coming

Ty had a follow-up MRI this morning, which confirmed that there is no evidence of disease in Ty's brain (NED).  Amazing news!  We were 100% confident that this would be the finding today, which is why we didn't make a big deal about the unexpected imaging that was scheduled for this morning.  Ty has been improving day by day so we were sure everything would be okay.  Nonetheless, I am going on two hours of sleep last night because no matter how confident I feel, I can't control the anxiety that comes with every scan. 

The MRI was ordered to see whether or not the bleed near his brainstem was dissipating, and whether or not the swelling had gone down.  We needed to have this done in order to decide whether or not it was safe to start up Ty's Avastin infusions again.  Ty's MRI showed some improvement and his bloodwork was extremely strong - like that of a perfectly healthy kid - so we went forward with the infusion.  He is doing great.  Our biggest concern now is his left arm.  While his left leg has improved significantly (his walking is much stronger) his arm is at a standstill.  He is able to lift it a couple of inches away from his body, but he has very little control of his hand/fingers and it is still extremely weak overall.  Because he is so young and the bleed was an isolated incidence, Dr. Kevin is confident that Ty has the ability to fully recover over a long period of time but is could take months, even up to a year, before we know his full potential.  The waiting is certainly the hardest part.  We just have to be patient (what else is new).   

Ty isn't phased nearly as much as we are.  Of course, he gave us hell over getting his "tubies" put in, and then again when we had to remove them later in the day, but he was otherwise a happy boy all day and he was able to "hold still like Yo Gabba Gabba" for his MRI without anesthesia.  So proud of him, as always.  Here's the happy boy on is way home today. I don't know how his hat became so totally crooked :)  LOVE THAT FACE and everything about him....  Love you all, too. 

Oh... and we hope you like the new photo on the website.  After all of these months, it was time to update his photo.  Let us know what you think!


  1. LOVE the new pic, and the ongoing wonderful news. I hope that this year brings many blessings - SuperTy continuing to be his superstar self and Gavin learning that the potty is his friend. May love and light continue to surround you! xoxox

  2. I absolutely love the new picture. It looks like a magazine picture.
    I am very happy to hear the good news. I am always thinking and praying for for Ty and all your family.

  3. Great News!!!! I love the new photo! Keep the good news coming. Way to go Ty!

  4. Awesome picture! Like you, I often use the Yo Gabba Gabba song but my son knows the rest of the words to that song. Glad to hear the good news too.

    Prayers from Texas,

  5. First thing I noticed wen I checked for a new update was the BEAUTIFUL picture of Ty. I absolutely LOVE it!!!!! I'm so happy to read another clean MRI! AWESOME! !! He looks so healthy nd happy. I'm crying happy tears as I write this. Wen I read in the other post about Gavin nd preschool I had to laugh as well. Mr. Big boy.....gotta love his independence. I like to call it "second child syndrome". I have found that most second children are more independent nd get into more "trouble" then their older sibling. They seem to grow out of the baby stage quicker too.

    As always, wen I read a post so positive, u have made my day. I will have a smile on my face nd happy thoughts going thru my head. Thank u for continuing to keep us informed about ur incredible family.

    All my love always,

  6. LOVE the handsome...

  7. I love the new picture! I can't tell you how when Ty is good it affects my mood. I am totally invested in your family's welfare. Love you guys, love the new picture!! Terri

  8. GREAT NEWS! Love the new pic - Ty looks amazing, happy and like he's getting stronger and stronger every day! So happy for him and your family!

  9. Love the new picture and I love that sweet face too!