to scare away ! Now that I have gotten that off my chest,
let's move on. ( I'm smiling )
Yesterday we were suppose to go to CHLA, but that did not
happen. Because we were not at the Ronald McDonald House
(we did not request a room) we needed to deal with Wednesday
am traffic. I have a few adjectives that could be used here but
Ethan gets in my face if I use them, sooooo... There was no way
that we would have even been close to our appointed time, so
we are rescheduled for mid-day next Wednesday (the 6th).
Late Wednesday afternoon we received a really nice phone call.
Anat Erdreich - Epstein MD. PhD, called and chatted with us
for about 30 minutes ! She is Ethan's team leader and main
doctor at CHLA. About 10 - 15 minutes of the call dealt
with how Ethan was doing, what are we observing, and how
is Ethan feeling. Then she asked if she could chat with her
"little friend". I must say here that in all my experiences and
conversations with others, never have I met a lead doctor
that is as wonderful as her. Ethan, and us, are truly blessed
to have her in our corner ! They have developed a really
nice "friendship", and Ethan looks forward to trips to CHLA
to see her.
As of today, Ethan is not doing as well as we would like. He continues
to have vision problems. This is mostly in his left eye and
causes him real concern. His major motor skills are not doing well.
He needs assistance to walk any distance and his movements
are quite jerky. His weight has peaked and is very slowly starting to
drop off. This was a side effect of one of the meds he needed to
take. He has fine motor issues as well. It is very hard for Ethan
to hold or grip small items with his fingers. This causes real
frustration and at times upsets Ethan a lot. He has left side of
body weakness and is dealing with facial palsy as well (left side).
He continues to have problems swallowing and must have all
liquids thickened prior to drinking. His voice is also a bit
higher than a normal 5 year old.
But in spite of all these issues, he laughs, smiles, jokes, and provides
us the opportunities to do the same. He is a remarkable 5 year
old young boy. He just reminded me that he is only a week away
from being 6 ! And he is 231 days older than he was expected to be.
One of the many, many great people at CHLA sent Ethan some stuff recently.
One item that got his attention was 3-D chalk and special glasses.
Thank you Alisha ( Ducky ) !
We continue to be very thankful for all the prayers and support we
constantly receive. Thank all of you so much.
Ethan with his chalk and 3-D glasses
10-30-2013
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