Saw Mrs. Dr. Krenie to get an
Rx for my AFO's and to set up an MRI/EEG of my head. I weighed 29 lbs and
am 32.5" tall! On my way to pork chop city!
February 5, 2004
Went to Dr. Carter today at TCH.
The enamel on top front teeth is disappearing. He said he's going to cap
them (if there is enough to hold caps) or remove them if they need it.
He's going to do it on May 4, 2004.
February 9, 2004
Had the MRI and
EEG of my head done today. Mom and Pop said I did real well. I don't know
if I did or not cause I slept alllllllllllllllllllll day....
February 13, 2004
Dr. Stowe called with results
of my MRI and EEG. There was nothing there they did not already suspect.
She said it (EEG) did show some sporadic spots of seizures. Also my
ventricles were a bit enlarged. All this doctor talk - I'm gonna have to
get me to one of the schools so I understand what is being said about me.
February 20, 2004
Saw Dr. Gerow. The curve of my
scoliosis has increased by 6%. He’s also going to do an MRI of my spine to
see if that is what is causing my spine to curve. He said if the curve has
gotten worse when he sees me again, he may consider putting me in a brace.
Mom’s not happy about that! She knows I don’t like to be restrained. Guess
I’m gonna have to get to walking so’s I don’t have to wear no stinking
brace. J
February, 2004
Mom noticed that I am kicking
my legs like I’m trying to swim or something. I would like to move, I just
have to get these ol’ muscles to working right…
March 18, 2004
Got my new AFO’s
today. I was not happy! But they are a cool space design.
June 26, 2004
Dr. Gerow called
with spinal MRI results today. He told her that my spinal cord is
attached to my spine. He is going to refer my case to the pediatric
neurosurgeons. When mom got the report of the MRI it also showed I had
cysts on my left kidney and my heart area was a little big (cardiac
cavity borderline prominent). She got started getting me in to see a
kidney doctor. Oh boy! New friends!
May 4, 2004
Had oral surgery today
for my top teeth that were losing their enamel. They pulled one on the
upper right front that was two teeth fused together and capped the two
just left of it.
May 18, 2004
Had my ABR today. Dr.
Howe said my right ear and improved from a mild/moderate loss to mild.
She told Mom that she couldn’t explain why that happened. Mom knows I’m
special like that tho. (*grin*) Miss Tina told Mom that sometimes us
special kids learn that we are supposed to respond to sound and so we do
better on hearing tests as we get older.
June 8, 2004
I went to see Dr. Dauser and Dr. Elenberg
today.
I saw Dr. Elenberg first for the cysts that
showed up on my kidney when they did the MRI on my spine. I liked her a
lot! The nurse put a bag over my weewee and I didn’t know what to think!
Dr. Elenberg checked me out good – she got a peepee sample and had the
lab work it up right then and she got me fixed up to get some blood
taken. I didn’t like the blood thing too good – I fought hard but the
nurses won out. Dr. Elenberg said my peepee had no blood in it (thank
goodness!) and my proteins looked good. A few days later the nurse from
the office called mom and told her the work up they did on my blood
looked fine too. Dr. Elenberg also wanted to get an ultrasound of my
kidneys so she could keep up with what they are doing. She told me to
come see her again in 6 months.
Next I went to see Dr. Dauser. He’s a really
nice guy! He checked me over good too (guess these Doctors want to know
who they’re working on – Pop coulda’ told ‘em!) He told Mom and Pop that
he wanted to see the pictures from the MRI that was done on my brain and
talk with Dr. Gerow again. He didn’t want to do surgery if it wasn’t
necessary (me either!!!) He asked Mom to get him the brain MRI pictures
and he would let her know. He didn’t take no blood and I was sure glad!
He did tell Mom and Pop that my spinal cord was definitely tethered at
the L3 vertebrae. When Pop told him about head looking smushed when I
was in NICU, Dr. Dauser said he didn’t have any good baloney to explain
that – he’s a regular Joe – me and him are going to get along just fine!
June 23, 2004
Dr. Dauser called Mom
today. He told her that I would definitely have to have back surgery to
repair my tethered spinal cord. He told her he could do it tomorrow. Mom
told him she would have to schedule it for the next week ‘cause she had
to work out the scheduling. I know she and Pop were nervous about this
and they both needed time to get ready in their minds for this.
July 1, 2004
Today’s the day! I went to the hospital for
my back surgery. We got there at 7:30 am. Mom got me checked in and
before we knew it, my Gramma and Grampa Walker were there. Woo hoo!
Extra loving time!! I was supposed to go into surgery at 9:30 am but
there were two other cases there and they were younger so they had to
take them first. We were ok with that. Around 12:30 pm the check in
nurses told us that an emergency had come through and the doctors had to
take that one so we were still waiting. We were getting a little
frustrated but we understood – if it was me, Mom and Pop would want me
to get help quick. I got called in at 3:30pm. Mom asked the doctor if he
had eaten and rested. She didn’t want no messups cause they were hungry
or tired. Mom and Pop got me changed into hospital garb and as they
walked down the hall with me to the surgery room, we stopped and got
some Gramma and Grampa sugar. That always helps : )
The doctors, Dr. Dauser and Dr. Boedeker,
told Mom and Pop that I made it through surgery fine and dandy – course
I was hurting like the dickens plus Mom and Pop couldn’t pick me up
cause of my incision. And I was crying and hollering and everything!
Gramma came back to see me and gave me some special loving then Grampa
came back to see me too and gave me some more special loving. The nurses
in recovery said I had to do some drinking and they wanted me to try
apple juice. Mom told them I have a hard time with juice but she tried
anyway. When that didn’t work they brought me some PediaSure – ahhhhhhhh
good stuff! I had a little bit of a hard time with it at first, my mouth
and throat kinda hurt from the breathing tube but I got a few swallows
down.
After I stayed in recovery for a little
while, the nurses rolled my whole bed up to my room in the hospital. I
had my own room and everything! I had a TV and a VCR and right across
the hall was a room with a refrigerator and microwave! The nurses that
took care of me were really nice! I liked them a lot and Mom and Pop
liked them a lot too! No one could pick me up and I was not liking that!
Course, I was asleep until the wee hours of Friday morn, but still – a
fella’s got a right to fuss! Pop had to go back to the house cause he
had to do some work but he told me he’d be back in the morning.
Dr. Boedeker came Friday morning and looked
at my back. He told Mom she could pick me up I just had to stay
horizontal. As soon as he left the room, she was working to get me in
her lap. She did good too – I was so happy to have her hold me I just
grinned and grinned! Pop came in soon after and I was happy to see him!
Mom told him what Dr. Boedeker had told her and he put me on his lap
too. Dr. Boedeker came back and he had Dr. Dauser with him. They looked
at my stitches and said they looked good. Mom had stepped out for a
while but Pop took care of things. I didn’t want to eat anything at
first but after a while I got back to taking care of my groceries. I
wasn’t doing solids, but that PediaSure – it was some good stuff!!
Mom and Pop noticed all the new stuff I was
trying now that I had some freedom in my back. I was pulling my knees up
to my stomach and I even turned to my side and reached for the bars on
the bed with my hand.
Saturday morning Pop asked Drs Dauser and
Boedeker about me going home today. Dr. Dauser wasn’t sure how Mom and
Pop could handle me – but Pop told them they could do it very well.
Shoot – they’ve been taking care of me since I was born and this was no
different. Dr. Dauser told Pop to get me upright as much as possible and
if my incision didn’t leak then we could go home this evening. Pop
started right away and by 5 o’clock that evening we were checking out!
When I got home, Mom put me in my bed and
goodness gracious I was glad to be there. I just looked around and
smiled and then I started giggling – I was home!!! My incision was
looking really good and by the time I went to see Dr. Dauser for a
follow-up visit, I was good to go! They removed my stitches and I’ve
been going strong ever since!
Since this surgery I’ve
been more alert, have a greater range of movement, kick my legs a lot
more, drool less and have better head control. And other people have
noticed a lot of these things as well. So I’d have to say that the
surgery, although painful, has been a good thing. Heck, I’m liable to be
walking by this time next year – ya never can tell!!
Wk of July 12, '04
I saw my therapists
this week! I was so happy to see them – I missed them a lot! They loved
on me and rocked me then they expected me to work! Can you believe it???
They didn’t do the hard and heavy stuff – but still – I was wanting more
of that loving thing!!
July 14, 2004
During Miss Tina’s visit
today, I used my middle finger on my left hand to push a button. She had
a toy shaped like a butterfly and it had a button which played music
when you pushed it. She held me face to face and had the toy on her
shoulder. She pushed the button with my finger and when the music
stopped, I tried to push it! I kinda missed but I was trying!
July 16, 2004
Pop got a job! He
says it’s a really good one and we’ll be moving to Lafayette, LA. Wonder
if they got women there????????
July 31, 2004
Sad week!! This was
my last visits with my therapists! I’m gonna miss them all so much! I
did tell them I’d be back to visit and we’d do lunch – so that helped
them some. Mom and Pop said they’d miss them too! I was real lucky to
have such great therapists!
July 31, 2004
Eldon’s home!
Eldon’s home! Pop went to pick him up from the bus station and I was so
glad to see him I gave him a Dox special! He got the full tooth display!
Wonder if he knows about the women in Lafayette???
August 2, 2004
Moving day! Mom and
Pop and Eldon (with a couple of other dudes I didn’t know) got the
moving truck all packed up and we’re off to Lafayette! Watch out
Louisiana – Dox and Eldon are on their way!!!!!!!
August 2, 2004
Moving day! Mom and
Pop and Eldon (with a couple of other dudes I didn’t know) got the
moving truck all packed up and we’re off to Lafayette! Watch out
Louisiana – Dox and Eldon are on their way!!!!!!!
August 4, 2004
I went to the
swimming pool this evening! Boy was it fun! I met some new friends and
played in the water and then I drank some milk and then I went to sleep.
I met a really nice lady, Ms Lissa. She likes to play motorboat with me.
She's fun - when I laugh, she laughs and when I kick, she makes the
motorboat sound. We have lots of fun! She's going to help mom get me set
up here in Lafayette like I was in Houston. I like the pool – I want to
go all the time!!!!!!
August 10, 2004
Momma took me swimming today. We had the
whole pool to ourselves! Then this evening me, mom, Pop and Eldon went
swimming and I decided they weren't moving me enough so I started
kicking on my own!
August 23, 2004
Dox had an episode last
night that was very frightening. He woke me about 12:30am to him
fussing. I got up out of bed and fixed him a bottle with 4 ounces of
PediaSure. I took him to the living room and fed him the PediaSure in
the glider. He took about 3 ounces. I put him on my shoulder and he fell
asleep after dropping his face into my shoulder several times. I must
have fallen asleep because I awoke to him squeezing my as if to hug me.
When I opened my eyes to look at him, his face was drawn as if he was
sucking a straw and his eyes were wide open. I could see his irises but
his eyes had a funny, wild look to them. The room was dark so I couldn’t
see if his pupils were dilated. His arms were jerking, as if he was
trying to squeeze a large ball, and the look on his face finally
registered to me as a look of terror. His breathing was fast but he
didn’t seem to be laboring to breathe. I pried his mouth open to see if
he had swallowed his tongue but it was still in his mouth. I cooed,
rocked and rubbed his back in an attempt to calm him but it was not
working. His back was not tense but as I felt Dox’s biceps it was if a
marble were under the skin. They were very, very hard. I carried him to
our bedroom and woke Marion. He sat up in bed and told me to give Dox to
him. He took him and after a few moments of holding Dox calmed down.
Marion also took one of Dox’s hands in his (Marion’s) pointer finger and
thumb and squeezed gently during his holding. The whole episode from the
time I awoke in the glider with him until he calmed down was less than 5
minutes. After the jerking stopped, Dox then seemed upset that he was
awake. We kept him in the bed with us for awhile alternately holding and
lying with him trying to soothe him. Dox was still agitated and whining.
I thought his gums might be bothering him so I applied some OraGel to
his gums. This did not soothe him either. He yawned frequently and would
doze on our shoulders or in our laps but seemed to have a hard time
falling into a deep sleep. I then gave him a dose of Benedryl as he
sounded stuffy and thought it might help him to calm down and get back
to sleep. He took the medicine without any incidence. He fussed a bit
more and I laid him on his stomach in his bed. He squirmed a bit in his
normal fashion and rolled to his side. He then fell asleep. I noticed
Sunday he was exceptionally irritable but passed it off as the high
humidity or his gums. Sunday he ate well, slept his usual amount and was
mostly himself saving for the fussiness. I don’t know what this was but
I will be finding an answer. He has never had an episode like this
before this one. My first thought was a seizure as he was jerking and
had the wild eye look. It could have also been a night terror or even
‘sleep walking’ despite the fact he wasn’t actually walking. I meet with
a doctor tomorrow to see if he will be able to care for Dox and I’ll be
presenting this to him. Today Dox is a bit lethargic, has eaten normally
and has been somewhat vocal. His activeness has not been as high as
other days. He woke at 6:30am this morn, took 4 ounces of PS and
returned to sleep until 9:30am. That is a normal routine for him when he
wakes in the night. He has seemed a bit more fussy/whiney than usual
today.
August 24, 2004
I
met my new pediatrician today. His name is Dr. Bruno. He’s a real nice
guy. I slept the whole time I was at his office. Mom said when she was
calling doctors in the area his staff was the nicest to her. Then the
lady she talked to asked her if she wanted to meet with Dr. Bruno in
person. Of course she said yes! He took his time with Mom and Pop in
answering their questions and all. They decided he was right for me so I
get to see him again real soon!
September 8, 2004
I
got to see Dr. Bruno again. This time I stayed awake. I weigh 32 pounds
now – watch out Shaq!! Dr. Bruno is going to put me in the hospital
overnight so they can test me out. We are going to see what my brain is
doing and how my heart is doing. I’m getting something called an EEG –
whatever that is. Oh well, me and Mom will have lots of fun together I
just know it!
September 13, 2004
Today Momma and me
went to the hospital. Pop took us. I got my own room with a big boy bed
and everything! The nurses came in to get see how much I weighed and how
long I was. When they put their slingy weight thing over my bed, Momma
picked me up and put me in it. Then she had to take off my diaper – I
got really tickled at that and just giggled all over the place! The
ladies thought that was funny too. Next they laid me on the bed to see
how tall I am. I’m a big ol’ 33 inches tall!! After a while, a nurse
brought Momma a tray with food on it. MMMMMM did it smell good! I had to
have me some food too! Another lady was asking Momma all kinds of
questions about me and her and Pop and what happened when I was born,
what surgeries did I have, that kind of stuff.
After she had left, they called Momma to see if we were ready for my
chest xray. She told them we were and off we went to the xray place.
They had the nerve to make me lay on a cold table (the technician did
put a blanket on it for me) with no clothes and then expect me to lay
still. NOT!!! But I did my best and I guess they got a good picture
because they took us back to my room.
When we got back, Pop was there! He came just in time too because a lady
came to do my EEG. She put sticky stuff all over my head then she stuck
wires to the sticky stuff and I tell ya – I looked like a Frankenstein
boy! I started fussing so Momma held me and gave me some milk. Boy –
that was good! I liked it so much I fell asleep in her arms.
Pop had to leave after the EEG and then it was supper time. Momma fed me
some cream of wheat then a fella came in with this big ol’ machine. He
told Momma he was there to do the echo. Hello! A little explaining here,
please… Is this like the rain thing? Anyhow, I liked him a lot because I
kicked and talked to him and just had a good ol’ time. He rubbed my
chest with this funny pointer thing and it had goopy stuff on it. It was
kinda cold at first, but then it got better. I even got to hear the
blood running through my heart and I laughed every time he did it!
Dr. Bruno came by next. He talked to Momma and me some. I like him a
lot. I showed him my eyes today. He’s real nice and I think he likes me
too. He’s helping Momma and Pop get me what I need.
Sometime after Dr. Bruno left, a really nice doctor man came by. His
name is Dr. Kevill. He sat down with Momma and talked with her and Pop
about me. I was glad Pop was there! I kicked and talked to all of them.
After Dr. Kevill left Pop said he had to get home to see about Eldon and
get himself some rest. Momma and I watched some TV and she played with
me some then we both got tired. I slept pretty good but when I woke up I
was on Momma’s chest. I wonder how I got there??
Dr. Bruno came to see us and Dr. Kevill did too! Dr. Bruno told Momma
that my heart is doing just fine. Dr. Kevill told her that I am having
seizures on the left side of my brain. He also told her I need to take
some medicine so that I can keep learning and growing and all. I like my
doctors! They’re fun to play with! Pop came to get us and I got to go
home! YIPEEEEEEEE!! I get to sleep in my own bed tonight!
