Day One

Last night was a bit of a rough night for Armand.  He threw up a bit during the evening, then woke up biting his lip during the night, followed by five of his “scary” seizures during the night (his first such seizures since Friday).  He spent a good portion of the morning whimpering, we think he might have a tummy ache.  He’s relaxing now with some water coming through his feeding tube.

The day, however, wasn’t too bad.  He was biting his lip during the day, bad enough that his lower lip looks like hamburger.  Dr. Utz is going to see if they can get a dentist to check him under sedation, that maybe he may have some gum issues that cause him some dicomfort and he that’s how he handles it; it happened with another patient in their care last year.

Working during his neuropsych test with some help from Mommy.

Working during his neuropsych test with some help from Mommy.

We had a scheduling hiccup (which wasn’t shocking considering that everything was scheduled last minute) Monday morning with his neuropsych evaluation; they were able to go ahead and fit us in later that morning, and they were impressed by the videos we showed them.

We then went across the street into the actual hospital, where Armand did fantastic while getting an ECHO test.  We meet with the cardiologist on Wednesday to discuss the results.

Hanging out in the Explorer Clinic waiting room.

Hanging out in the Explorer Clinic waiting room.

Random note: I took a picture of Armand in the waiting room of the Explorer Clinic where we meet Drs. Whitley and Utz, and posted it to the Amplatz Hospital facebook page.  And almost immediately, they shared it with everyone on their timeline.  And this morning, there was a comment on the post from the lady who did Armand’s ECHO.  I found this while in the meeting with the doctors, and showed them; Dr. Whitley was, and I quote, “blown away”.  Please “Like” their page if you have the time.

We met with the doctors yesterday for just over an hour, and they loved seeing the videos we have of Armand on his facebook and youtube page, and have asked that we might sign a consent form that they could show them off to other doctors.  Our little buddy is going to get even more famous!

Today we have the spinal tap, MRI, and eye exam under anesthesia.  Also of note, they are going to try to get a dentist to come in and check him under sedation as well.  Keep an eye on our facebook page for short timely updates as we go today.

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2 Responses to Day One

  1. Leslie Dranschak says:

    Hugs & all our love being sent to you guys!!! xoxo 😀

  2. katie Shelton says:

    Hello my son was just diagnosed with gm1 and we are going to see Dr Whitley at the end of this month. I would love for u to contact me to let me know how things have progressed kT_530@Hotmail.com

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