Friday --I
went over to Michael's house tonight to visit. His nurse was just
leaving and she commented on how much better Michael is looking. She
said that the last 2 times she's spent with him have been the best ever.
I have to agree...tonight he was doing really well! My
favorite time ever with him though was at the Zoo. That was great
seeing him look all around.
Even picking him up and moving him around didn't bother him all that
much tonight. He's doing much better, and that pump is really
doing a lot for him. Just think of what it could do along with
Brain-Net :o)
We had some fun walking around the house for a few minutes & then we
watched Austin play Donkey Kong for a while. Michael watched his
every move :o)
Michael & I went down to
his room for a while then. Awhile back, an online friend told me
to show Michael his voicebox by touching his hand to it. I decided
to try this once again. I took his hand and laid it on his throat
and explained that he could feel a vibration when he made a noise.
I started making sounds and then he'd try some! As he
started to figure out that he could feel his own voice, he started
experiencing with different sounds. No real babbling, but
nonetheless a start. I continued to encourage him to try more
sounds, and he really seemed impressed with himself :o) I was so
amazed I have to admit I got tears in my eyes.
By then it was nearing his bedtime and I laid him down.
Week of 1/28/2001
Sunday -- We went to see "The Emperor's New Groove"!
That was a really funny movie. (Its a kid's cartoon starring
David Spade & John Goodman as the voices of the Emperor and a
peasant guy.)
It was a 72 minute movie, but as you know there's like 15 minutes of
previews, so it ended up being about an hour and a half. Well,
Michael sat through the entire thing without crying. He was very
aware and paid attention to the movie (except when someone would walk
past; then he'd look over at them). He really seemed to enjoy it!
Michael loves lights. Before the movie he tipped his head all the
way back and looked at the lights on the ceiling for a while. As
soon as the movie was over and the lights came on, his head went back
again to watch the lights. :o)
I took him back to my house for 2 hours and talked to him, worked on the
voice box thing some more (he tried even harder to make sounds this
time), and just spent some more time with him. He had sucha good
day -- only cried twice.
His awareness has improved more than I've ever seen it, and he's trying
so hard to move and make sounds. This has been the second greatest
day with him ever -- the first being the zoo of course. Its so
much fun to take him out & just see how aware he really is. He's
such a sweet kid & I love him. Can't wait till I see him
Friday again.
Week of 2/4/2001
Saturday -- I
got to baby-sit Michael today along with his brothers and sister while
Rod & Shelly went out for Rod's birthday. Aaron's friend Josh
came over too...good kid. They all entertained themselves pretty
well. I stayed from 4 till about 10:30.
Michael & I read a really great book I'm sure you've all heard of --
"The Little Red Hen." It was sent to him all the way
from Scotland :o) He looked where I pointed as I told him the
story & pointed to the pictures. It was a lot of fun to read
that to him. He smiled twice at me while I read to him! No
seizures, just smiles :o) So sweet!
Well, Michael was starting to doze, so I laid him down for awhile while
we ate dinner. After dinner I checked on him and he was awake, so
I turned the light on & we sang for awhile. First, I put in a
tape called "Mannheim Steamroller meets the Mouse." Really
cool -- bunch of Disney songs. It was all instrumental, so I got
to make up my own words LOL. Naaaa, I got the general idea :o)
The whole time, I put Michael's hand on my throat and he made
sounds. Many of the sounds were unmistakable efforts at syllables.
Next, we listened to the good ol' Hi-5 tape. I know all the
words to all the songs & all the songs in order by now and (enjoy
every second of it). Basically after that I just
continued to make sounds and asked him to repeat them. Though he
was unsuccessful at most of the sounds, he sure made a good attempt.
Especially with the word "I" which came out "Uhhh-EEE"
which he repeated over and over and over trying so hard to get it right.
He tried hard and someday he'll get it!
Week of 3/25/2001
Friday -- Dear
Michael fan club,
I got out of class at 1:50 and arrived at the hospital about 2:00.
I went up to the PICU and asked about him and they said he's in on
the floor (a regular room). I was shocked!
I went down the hall to his room. The resp. therapist was doing
some breathing treatments on him -- Bob is his name. A
really nice guy. I had talked to him several times before when I
used to volunteer there. He talked to Michael while he did the
treatment -- something I like to see.
Bob left, the nurse came in and checked on him, then it was just me
& him.
Michael had his eyes half open -- pretty groggy. He was trying to
see me, it seemed. then, his eyes popped open and he was awake the
rest of the time. Wide awake. He was all there, looking
around. It was great. I always hate to see him so unaware
after the surgery so this was really great.
Hoping that he'd be awake enough, I brought along my Bear in the Big
Blue House tape just in case :) I said, "Hey buddy,
I'll be right back." and I ran down to the activities room and
borrowed a tape player. I got out the song leaflet and sang along
(sorry Michael LOL). I put his hand on my throat while I sang.
His arms were very loose, so I was able to hold them there the
whole time. He got a lot out of it. You can alwasy tell when
he's interested. He was studying the vibrations; that was obvious.
Many times he'd move his mouth.
We sang the whole tape through twice! Occasionally he'd even make
sounds. Remember, he just had surgery yesterday -- he was doing
very well. This cutie wants to talk.
Rod & Shelly came up for a couple minutes around 6:30. Dr. Lindell
came in at this time also and said Michael looks great and may even go
home tomorrow. Personally Im' hoping he gets to rest up until at
least Sunday.
Around 7 Bob came in again and did another treatment. He
complimented Michael on how well he did during the treatment. I
gave Michael a hi-5.
I left about 20 after 7. He's doing so well, so soon. I'm
proud of him. During this whole time of about 5 hours, he had his
normal amount of seizures, but only 3 big ones. He only cried once
(during one of the big seizures).
Good job, Michael. I love you.
Week of 4/8/2001
Sunday -- Hi!
I got to see Michael yesterday (Sunday) and it was great! It was
the most beautiful day -- bright sunny skies and warm temperatures.
Everyone went to a birthday party for a relative, so Michael &
I spent a few hours together.
Michael got out of the hospital on Saturday (3/31). Unfortunately,
the cast is too tight in spots and has rubbed a big spot on his back.
He may be having the cast removed Monday already because of that.
If so, he'll wear his brace for the remaining time.
Since it was such a beautiful day, Michael & I spent the whole time
outside. When I got there Michael was outside laying on the swing
on the back deck, enjoying the day. We took a (really long)
walk. I always carry Michael so he has a better view. I
decided to take a route we hadn't gone before -- I turned right instead
of left at the end of his street. He had different reactions or
expressions to the sounds of dogs barking and birds chirping. Everyone
says he's always been a nature boy like me. It was a lot of fun.
Kyle, a neighbor kid, came running toward us on the way back and
was talking to Michael for a few minutes. He always talks to
Michael and I like that about him. He said that Michael would be
walking in a year :) I like that attitude.
Michael & I walked in the house and Michael got upset with me LOL
He didn't want to come inside -- its such a beautiful day out
there -- but I explained to him that I was going to just set up the tape
player and move the swing into the shade and then I'd come get him
(It'll just take a minute). Well, he understood cuz he stopped
crying!
Outside we did our usual singing to the Bear in the Big Blue House.
Next time I'll probably try Hi-5 again. And then some
speech. He always tries hard! I stood him up for a couple
minutes in his cast and gave him a big hug. I put his looser right
arm around my neck and when I did that, he tried to move his left arm up
as if to hug me with that arm too. I tried it a couple other times
and he did it each time. I love him. He's a cool kid :)
He's got real determination.
Week of 4/22/2001
Sunday -- I saw Michael last Sunday, the 22nd. When I went
over, Shelly showed me some pictures of Michael right after his cast was
removed. It was awful. His whole body had terrible sores all
over from the cast rubbing & being too tight. They had to beg
the doctors 3 different times before they finally agreed to take the
cast off that early. I don't even want to imagine what he would
have looked like after the full 6 - 8 weeks. During that week,
they couldn't touch Michael without him crying. Thank God, by
Sunday when I saw him he was pretty well healed up. He's wearing
his brace now rather than a new cast.
Michael was still a little sore Sunday, but not bad at all. Him
& I went on a really long walk because it was so beautiful. We
put on his brace first, and then I carried him around our usual area (up
his street, around a road that loops, then up and down one street over).
Michael was still enjoying it, so I carried him down to Roan where
we went last time and carried him up and down that street. He
loved it. On Roan, a small group of kids (six & eight year
olds) gathered around and asked what happened. They were really
nice & said, "Oh I'm so sorry. I feel bad for him."
They were nice kids and we talked for a few minutes because they
had a lot of questions about him.
When we returned to the house, Rod & Shelly & the kids went for
a drive so Michael & I hung out. I laid on the deck with him
& talked to him for awhile while trying the throat-speech thing.
Then I went home.
Saturday -- Hi,
What a day! Here's the condensed version :)
I got to see Michael from 2:00 until about 6:30. He was out on the
deck again enjoying the sun when I got there. I asked him how he
was doing and talked to him for a couple minutes about the usual stuff.
I picked him up, gave him a big hug and asked him if he wanted to
read a new Barney book I brought called "Just Like You."
I made an extra effort to try to get him to talk today. Then
we read the book. I held his hand over my throat the whole time.
He watched me and moved his lips. He fell asleep after the
book was over and was having quite a dream. His eyes moved all
over behind his eyelids :) I just held him and rocked on the porch
swing for quite awhile....
Then we read the other book I brought over called "Frogs."
It was a much shorter book. I think Michael enjoyed them
both :) At the end it said something like "Frogs say 'croak'
or something. So I went with that idea and talked to Michael about
different animal sounds. (Lance sent the books to him. Thank
you, Lance.)
Throughout the whole time I was there I encouraged him to make sounds,
even if they weren't words. I told him a few times that I hoped he
wasn't afraid of what his sounds might sound like, to just go for it and
make some noise, that I wanted to hear his cute little voice :) He
tried extra hard, I could tell. I kept encouraging him to try the
entire time I was there. I asked him a lot of "Yes" and
"No" questions and encouraged him to answer. He moved
his lips an awful lot!!!! And he also made some grunts here &
there.
We went on our usual walk before I left. Another little kid,
probably about 8 came up and asked what Michael's name was and I told
him. He said, "Hi Michael," and talked to me for a
minute and rode off on his bike. The kids around there really like
Michael :)
It was getting cooler now as the sun set. I took Michael inside
when we got back and laid him on the couch. I whispered to him
that I loved him. I told him, "Bye Bye" and encouraged
him to tell me "Bye" also. He looked at me as if to say,
"I'd love to talk to you." And he moved his lips some
again.....
Week of 4/29/2001
Friday -- Yesterday (Saturday 5th) was Michael's 4th bday already!
He's getting big.
I saw him Friday for several hours. I got there around 4:30.
Aunt Tammy was there talking to Michael, and he watched her so
closely, understanding every word. Michael's new nurse was there
also. She told me later that even after being there just twice she
can tell that Michael is very smart and understands every word she says
to him. She's impressed with him and says she really believes that
the stimulation with his throat and playing back his voice to him on
tapes will really help.
Michael got a couple cards in the mail. Thank you!
Michael got a really awesome gift all the way from Scotland. Has
anyone ever seen the bubbles that you can blow that don't pop? If
so, where can I get some more? Those are great!!!! The
ceiling fan was on and drew the bubbles up and whipped them around the
room and back and forth. Michael moved his head & eyes all
around and was so interested by that. We played with that for
quite a while. I can describe it with words, but that just
wouldn't do it justice. He was amazing and this was definitely
near the top of the list for "Moments I've seen him being most
aware."
Someone else sent him some money. I didn't have time to spend all
of it yet, but I did use it to buy a cassette tape that I will tape his
voice on and play back for him. This will help out a lot with his
speech I believe. I'll use the rest for a Bear in the Big Blue
House book or something like that. Thank you!
We didn't take a walk yesterday, but I did take him out in the yard for
a few minutes and we walked all around listening to the birds and dogs
and all that. He enjoyed it.
Now for something even cooler than the bubbles:
First, I smiled a big smile at him. I asked him if I could see one
of his cute smiles that I loved. He tried! It was so cool.
Now remember, the only times I've really seen him smile are during
seizures. But he really really tried & I saw the right side of
his mouth quiver. Wow! :) I did this a couple times
throughout the evening and he did that each time.
Throughout the night, I asked Michael a lot of questions, esp.
"Yes" and "No" ones just to get him to try to talk.
And, he tried to move his mouth a few times.
Then, I tried the simplest sound I could think of. I simply said,
"Ahhh" over and over and told Michael to try. He was
adorable!!!! That cute personality. I put my ear down to his
mouth and said "I'm ready -- go for it." It was then
that he a little groaning noise. Everytime I said "Ahh"
he waited till I put my ear down there. Sometimes I didn't even
have to tell him "I'm ready" -- he waited and then made his
noise. Not an "ahhhh" noise by any means, but the key
here is that he made the same noise each time showing me that he was
trying!!!!!!! Next time I'll try another really simple sound along
with "ahhhh."
That was the highlight. That cute little kid trying so hard.
He keeps trying.
I'll see him again next weekend!
Thank you all for reading his updates and praying.
Week of 5/20/2001
Sunday -- I tried out the tape recorder idea for the first time
while I read the book "Mr. Brown Can Moo, Can You?" to him.
He made some attempts to make sounds, and when I played it back,
he listened very closely to his voice and tried a couple times to mimic
himself.
Saturday -- we went to see Shrek at the Maumee theater. Wow,
that sure is a hit! The shows were selling out fast! (I'd
recommend it to anyone.) Michael watched for probably 15-20
minutes then fell asleep. As soon as the credits started, his eyes
opened (little stinker) :o) So we'll have to go back
when its less crowded.
Week of 5/27/2001
Sunday -- First I'd like to mention this is the 2-year anniversary
of when I met Michael. I thank God that we met. He means so
much to me.I went over to his house with my Dr. Seuss book
and tape recorder again. What an amazing kid! I'm sooo proud
of him for trying so very hard. He won't give up. First, I
ran the massager over and around his mouth while he listened to himself
from last week. He listened so intently again. Then, I
talked to him for a few minutes and took his picture (which is attached
to this e-mail -- Isn't he the cutest?) :o)
Then we read the book again while I tape recorded. He did so much
better this time -- tried even harder. It took us quite a while to
read through the book because I make sure I give him plenty of time to
respond to each sound. Sometimes it takes him awhile to get his
sound out, but he always does. He made lots of moans and grunts,
mostly, but as we read, he tried harder. His sounds got louder and
he even made a couple syllables. I'll try to make a WAV file of
some of his sounds soon. I'm sure the more we try this the better
he'll get. He's already starting to prove that to me. When I
played the tape back, he did an excellent job of mimicking each and
every sound and even added in a couple extra here and there. I
could tell he was very excited and proud of himself. He just kept
it up.
Then, we finished off with some Hi-5. He started getting really
tired eventually and finally fell to sleep. I gave him quite a
vocal "workout."
Oh yeah :) Guess what? Michael's doctor signed the forms for
Vail Meadows allowing him to participate. He will probably be
starting on June 14th in the 7:15 PM group. I'll be his sidewalker!!
I'm so excited. Not only does the movement of the horse help
relax muscles and help the hips, but it also encourages kids to be more
vocal. :) I'll keep you all updated and will be sure to tell
you all when the definite start date is. Be sure to check out Vail
Meadows' web site so you can see where Michael will be going.
Vail
Meadows Therapeutic Riding Center ~ Oregon, Ohio
Week of 6/10/2001
Thursday -- Tonight was Michael's first time horse-riding! His
class starts at 7:15 at Vail
Meadows and it will be every Thursday. His mom, dad, brothers,
and sister came along to watch him. :) They were running a couple
minutes late, so we quickly took Michael into the helmet room, Shelly
strapped the helmet, and put on his pants and socks while I held him.
(It was around 90 degrees, so didn't keep the pants on longer than
we had to. Pants are required to ride).
Michael didn't start right at 7:15 like the other kids because since
Michael will be laying on the horse, he is held on the horse
differently. The other sidewalker (Rebekah) and I and the horse
leader (Nikki) had to make sure we were comfortable holding him on.
So, after they laid the blanket on the horse, we put Michael up there
with his legs on either side of the horse's neck. We made sure
that his hands and arms were touching the horse so that he got the
stimulation there also. I explained that Michael has seizures
sometimes and he may posture etc., etc. so that we were prepared to make
sudden stops if we had to. We made sure we were comfortable
holding him on, one hand on a leg, one hand on his arm. Sandy, the
volunteer coordinator walked along behind me and kept his head in a good
position. We started walking about 7:30.
The two other children in the class used one end of the arena, while we
used the other. We walked Michael around and he really seemed to
enjoy it. He'd occasionally smile. He'd look back at Sandy,
then up at me again. Gradually he got more & more relaxed and
his hands opened up. Rebekah was on the right side, that hand
opened first. Then about 10 minutes later, his left one opened on
my side. We held his hands close to the horse so he could feel the
horse and pet the horse.
We only had to stop once because of a seizure. His head moves when
he has a seizure, burying his nose in the horse, so we stopped till it
was over and then repositioned him. We stopped a few other times
to reposition him -- the movement of the horse causes the movement of
his hips & he slips a little.
His mom took a bunch of pictures. I can't wait to see those.
I'll make sure they get put on the site too :)
Everyone loved Michael. Last night was kind of a trial run to see
how he reacted and what needed to be done differently. He made it
through the entire time without posturing or getting upset! Even
with the heat! It was very relaxing for him, and all that movement
will help his hips (and the rest of him) so much! I can't wait to
continue this.
Week of 7/08/2001
Thursday -- Michael is doing really well with his horse riding.
His horse, Rusty, is good for him. We have continued with
having me hold both legs and one arm, and Sandy holds his other arm
& head. She just loves singing to him. She told me that
she's been studying her nursery rhymes :) Last week, Michael
was looking even better. It was noticed that his legs and
ankles are getting more relaxed. He can bend a little more at his
hips than before! So as you can see, a few more weeks at this and
maybe we can sit Michael up in the stroller again. Its been awhile
since we've been able to do that! He is also lifting his head and
upper body up more while on the horse (and off the horse too). Previous
weeks, he has mostly favored his left side, but last week he took turns
and would look at me, then to Sandy and back to me. Once, he
looked at Sandy for, I'd say, 10 minutes before turning his head back to
the left. This is really good.
Saturday -- I went over and baby-sat Michael for a couple hours.
I fed him some oatmeal. It was so cute -- I told him to spit
when he's done, and you guessed it! A few more bites and he
decided he was done. He went "PPPPPTTTTTTTTTTTT!" This
is the first command I noticed him follow. Today, I noticed some
more, but I'll get to that. After feeding him, I read our book to
him out on his swing on the deck. Its been awhile since we've done
this, so it took him awhile to get warmed up. But gradually he
moved his lips more and made some noise. Then, we went back inside
and I read to him a new book sent to him from a nice man in Minnesota.
He loved it. :) The book, "Atlantis", had colorful
pictures and even made noises. Thank you!
Week of 7/15/2001
Sunday -- So much fun!!! I went to the zoo with
Michael...just me and him hanging out for a few hours! Lately I've
been seeing Michael pretty much only for the horse riding. This
time today with him was wonderful. I really noticed some things
I've missed, like how much more he moves his eyes, that he can follow
some commands, etc.
We started out in the bird house. Wow! So many colorful
birds! Some of the rooms are open and the birds fly all over --
right past us! One flew esp. close and made Michael jump, but it
didn't upset him. He was doing so good today! Didn't cry at
all. In fact, he smiled several times!!
Next, we traveled across to the science museum were we saw the koala and
the wallaby. When we came out of there, we saw Raquel, who goes to
my church and was in my grade school class. She met Michael well
over a year ago and couldn't get over how good he looks and how much
he's grown. He's come a long way.
Then, we saw the reptiles. Well, I did at least. He fell
asleep after he saw the crocodile. We found a park bench and sat
for about 20 minutes to let him nap, then I woke him up. He was
pretty groggy and his eyes were heavy so I told him, OK maybe we should
leave. He suddenly was wide awake and ready to go LOL. We
continued on and saw the elephants and giraffes.
Then, it was off to the monkeys which I really think is Michael's
favorite. He watches those so closely as the jump all around.
One of the orangutans walked right up to the window, pressed its
nose, and had a staring contest with Michael :) I held Michael
right up there and they just looked at each other. It was really
funny. We continued on and saw the apes, gorillas.
Our last stop was the fish. The park was about to close, so we
just looked at a few. He watched these pretty intently too as they
swam up above him and past him. I showed Michael how to make a
fish face & he mimicked the sucking noise I made.
That was fun!!!! But now my arms are tired LOL. Oh well, it
was sure worth it. I took him back to my house for a couple hours
before taking him back home. When I asked him to raise his hand if
he'd like to take a walk, he did! There was maybe a 20 second
delay, then he started moving around and up popped his arm...he looked
up into my eyes like thinking, "See, there's my arm now take me for
a walk." LOL I'm going to try more things to see what other commands he can
follow. He's doing so well! Vail Meadows has a lot to do
with this definitely!
