Tuesday, October 27, 2009

Phone call from Dr. du Plessis

I gave it a few days to sink in before posting, I apologize. Last Thursday night Dr. du Plessis (Chase's Neurologist in Boston) called. He had been in contact with several specialists and wanted to fill me in on their discussions.

#1. He had given a fetal radiologist the images we took to Boston from Dr. White. The radiologist confirmed that Chase absolutely had 2 perfectly formed cerebellar hemispheres, a.k.a. a normal cerebellum before he was born at one point. This has Dr. Du Plessis and several doctor's he has spoken with very confused because of the fact that there is NO scarring on Chase's brain, NO sign of injury and absolutely NO cerebellum...

#2. He spoke with two specialists in the Netherlands about testing Chase for a genetic syndrome, Pontocerebllar Hypoplasia (PCH) which we discussed during our visit to Boston. We are arranging to have the sample drawn, packaged and shipped to Amsterdam. The specialists have never seen a case of PCH with "Vanishing Cerebellum" which is basically what Chase has (had?), but there are multiple types of PCH and he could be a new category.

So we are all very confused with where his cerebellum and pons went, why there is no trace of it, no sign of injury and thank God why he is doing so WONDERFULLY!

He has a new physical therapist who we adore. She has him WALKING...she's helping an awful lot of course, but she is determined to get him moving.

He is beginning to sign with his speech therapist, sing with his teacher, identifies body parts, identifies pictures, has an extremely sarcastic laugh which we are extra proud of, LOL. He will take YOUR hands and teach YOU to clap or sign "all done".... I'm telling you, g-e-n-i-u-s! It's just taking a little longer for him to show it! He plays on the floor up on all fours all the time now. Gets into cupboards. WATCHES SPONGEBOB! (free time for mommy!)

He has an appointment with the surgeon about his feeding tube insertion on November 4th...

His P.T. just put through paperwork for him to start swim therapy once a week.

OH! Main Mobility on Main Street in Clarence won the bid for the van modification!!! We're so happy. We met with them before we bought the van because we didn't even know what we were looking for. It's going very soon now! FINALLY! It will be a long 6-8 weeks, but well worth it. Now if we could get a modified house to park it in front of...no we haven't found anything even close yet. It's amazing how picky we have to be and how unpractical houses are when you have a child that will realistically be in a wheelchair/walker indefinitely...

Ok, I can't imagine I've left anything out, except that, since this is MY favorite time of the year I have to say:


a few Boston pics:

This is "Moofie the Giraffe". Alex bought him for Chase with his own $ while Chase was in his MRI...Chase IS in the van, I promise...

Our room was GREAT!!! We'll be staying there again!

It was a VERY long 3 days...

Brotherly love!

Take Care Everyone!
We'll keep you updated, XOXO


  1. I love the picture of Alex and Chase! Alex is such a sweet, loving brother!

  2. That is so strange... Daxton's brain looked perfect in his ultrasounds, too. His MRI was non-sedated, however, so I don't know if they are able to see bleed-related trauma. None of our head ultrasounds ever showed any brain bleeds, though.

    I think we may get a sedated EEG and MRI in the next few months. Maybe we'll know then.

    I hope you're able to find out something soon! And I can't believe Chase is WALKING! A lot of help or not, what an accomplishment. I'm so proud of him!!!

  3. Wow... way to go Chase! He is progressing very well!! I love the pictures.. especially the one that shows how much Chase loves Alex ( and vice versa)