DocJana - 2/16/2003 at
10:57 PM
"Paul said, 'I am convinced that neither
death nor life...nor anything else in all creation, will be able to
separate us from the love of God that is in Christ Jesus our Lord.'"
Romans 8:38-39
Today started with a lot of
"storming" and ended with alot as well...in between, Aubrey rested
well! No therapy since it is Sunday...it is so hard to see Aubrey
appear so uncomfortable and full of panic and not know why....it
could be the stage they go through as they get more aware and they
become more agitated...she just seems worse in this aspect the last
few days. If it means she's becoming more aware, then hallelujah and
let's get through it!
DocJana - 2/15/2003 at
07:24 PM
"I will lift up mine eyes unto the hills,
from whence cometh my help." Psalm 121:1
Aubrey
had a rough morning...lots of "tone", elevated temperature, and
perspiring...her doctor doubled one of her medications for
spasticity (tight muscles, contracture) and right now she is
sleeping well. It may make her fairly sedated...we don't know yet,
but she can't continue like she was this morning. We'll see if she
acclimates to the new dosage over the next few days. We still do not
know about Houston...her doctor here, whom we LOVE, thinks it would
be a good idea...we're just waiting on the new facility to review
everything, and then, of course, the insurance. I will let everyone
know as soon as I know! Pray for a restful day for Aubrey
tomorrow...and that she's not too sleepy Monday for therapy! Have a
great weekend.
DocJana - 2/14/2003 at
02:27 PM
"Come unto me, all ye that labour and are
heavy laden, and I will give you rest." Matthew 11:28
It looks like this will be my update for today. The
library closes shortly, and for some reason, an error or something,
I can't get online in my room as of last night.
Aubrey had
another restless night...she is having these autonomic storms that
seem to keep her awake and agitated from midevening to middle of the
night. Last night she would go to sleep, then wake up in 10 minutes
with her alarms going off because she was sweating and had increased
heart rate. She has not had afternoon therapy yet, but this morning
she did well on the tilt table. I believe she tried and started to
turn her head towards me when asked, but then gravity took over and
she let it fall! Anyway, she's getting dressed in her Valentine's
jammies....she's not going to the floor party because there are so
many kids it would probably over stimulate her. BUT she's getting
lots of hugs and kisses from us....and I know her mind and heart are
bombarded from Valentine's wishes from all of you! Have a wonderful,
loving day!
DocJana - 2/13/2003 at
10:33 PM
"Father, I thank you that you have heard me."
John 11:14
Today Aubrey slept through morning
therapy (surprise!!!!). This afternoon she had to be awakened, but
did stay awake after that. She worked really hard to pull her head
into a forward/natural position from hanging backwards...it was very
obvious how hard she was trying...she'd get it part way up then it
would fall back because she got tired...was good to see her trying
so hard though and so much in response to being asked to. She was
also asked a question today that she made a vocalization...it was
just a sound to us, but possiby an attempt to answer for Aubrey. We
don't really know but it was done at an appropriate time for a
response. We love where we are...everyone is so very loving and
caring. We are considering, seriously, about transferring Aubrey to
Houston to TIRR...Texas Institute for Rehabilitation and Research.
We went to Houston this week and spoke to the director of the brain
injury program, and she feels like Aubrey would be a candidate for
their program. Please pray for wisdom for us as we pray ourselves
for the right decision.
DocJana - 2/13/2003 at
01:07 AM
"You, dear children, are from God and have
overcome them, because the one who is in you is greater than the one
who is in the world." I John 4:4
Aubrey's "tone"
is getting pretty high. This means she is contracting her wrists,
hands, etc...it is a neurological response that occurs in brain
injury...in anoxia, it tends to get worse as time goes on. It also
means that sometimes she is so tight, she may not be able to respond
in therapy even if she wanted! The doctors are working on adjusting
her medications to try to help. This morning, she gently shook her
head to 2 questions her therapists asked her....and she seemed
really bright and alert this afternoon during therapy. She's having
a hard time in the evening and late night relaxing and going to
sleep...she tends to run a high heart rate, sweat, and be somewhat
agitated. This is not an abnormal thing for her condition, but
certainly hard as a mother to watch. Please pray that when it is
time to sleep, that she sleeps peacefully, and awakes refreshed and
alert in the daytime so she can participate in therapy fully! Thank
you....we love you.
DocJana - 2/10/2003 at
10:44 PM
"I thank my God upon every remembrance of
you, always in every prayer of mine..." Philippians 1:3
We just wanted to let every one of you know again how
grateful and blessed we feel to have your prayers. I thank God for
you, and ask that each person that visits her website and prays for
Aubrey receive blessings from Him.
Yes...Aub is still
sleeping alot during the day! She slept through the tilt table this
morning, but tolerated it well. This afternoon she tried to sleep
through therapy, but was awake quite a bit on her abdomen in the
gym. During her shower, she vocalized alot...but not like she was
stressed, more like she was just talking in her little new voice. No
words, of course, just sounds. I may not be able to update tomorrow
night, but if not, I will be back on Wednesday! Everyone have a
great day because we're going to!
DocJana - 2/9/2003 at
09:02 PM
"From the first day that you set your heart
to understand, and to humble yourself before your God, your words
were heard." Daniel 10:12
Again, Aubrey slept!
She was only awake...maybe...3 1/2 hours all day and into the
evening! When she was awake, she moved her head some and seemed to
become excited somewhat when we talked to her. Hopefully she's
getting geared up for a productive day in therapy tomorrow!!
DocJana - 2/8/2003 at
09:16 PM
"The tongue of the wise promotes health."
Proverbs 12:18
We want to again thank everyone
for their affirming and encouraging words. This morning Aubrey
yawned and while exhaling made the same loud sounds we would when
yawning outloud. Then she followed with some light "humming".
(noises, not singing!) Later today I spoke on the other side of the
bed from the way she was turned, and she lifted her head off the bed
and turned her head back to look at me. She wiggled her toes on
command during therapy, and seemed more alert today WHEN she wasn't
sleeping! Tomorrow she'll get to rest, and be up and running Monday
morning!
DocJana - 2/7/2003 at
10:00 PM
"The mountains may depart and the hills be
removed, but my steadfast love shall not depart from you." Isaiah
54:10
Sorry about last night's update! I was SO
tired! Aubrey had a good day in therapy today. She vocalized alot
this a.m., although didn't do anything responsive at that time. This
afternoon she went to the gym and obviously turned her head toward
Brady when told to find her dad. She also vocalized 2 other times
today when no one was "messing" with her...just soft sounds, but
obvious. She has been sleeping more during the day, I think because
her meds were increased earlier this week. Hard to find that happy
median! Keep your prayers strong and have a great weekend!
DocJana - 2/5/2003 at
08:18 PM
"The love of the Lord" Hosea 3:1
Aubrey is really sleeping! She's still trying to adjust
to the new medication dosages, but is waking up nice and bright
several times a day. This morning she vocalized ALOT during therapy,
and this afternoon vocalized a small amount. I wouldn't say she did
anything responsive today, but even with the medication, is sitting
up better with very little help. (Understand, she does not get into
the sitting position by herself, she has to be placed there)
Sometimes all she needs a "finger" to balance her. She was able to
be up on the tilt table and go almost straight up...of course, she
slept through most of it! Her joints ARE getting a little looser,
but still get pretty tight at times. She's very loose while
sleeping. Even though she slept, it was important to get her up on
her feet for joint pressure and the pull of gravity. She is starting
to do a few things that may mean her circadian rhythm is kicking
in...I hope so! She's certainly slept better the last few nights.
She really connected all day with Brady, and he'll be spending the
night with her tonight.
DocJana - 2/4/2003 at
11:38 PM
"With God all things are possible." Matthew
19:26
A friend sent me this verse today in an
email...it is very appropriate for us right now! We so want things
SO much faster...it's hard to be strong sometimes. I'm so thankful
for the words of encouragement we received today, and thank all of
you for your prayers. Aubrey slept alot today (remember, some of her
meds were doubled yesterday evening), but did manage this afternoon
to vocalize alot, turn her head on command, spend time on her
abdomen in the gym and up on her elbows (supported by PT), and
seemed to rest very well during the evening. Please pray for Brady
and I, as parents, to be making wise decisions for Aubrey...we're
trying the best we can.
DocJana - 2/3/2003 at
09:41 PM
"And not only this, but we also exult in our
tribulations, knowing that tribulation brings about perseverance;
and perseverance, proven character; and proven character, hope; and
hope does not disappoint, because the love of God has been poured
out within our hearts through the Holy Spirit who was given to us."
Romans 5:3-5
This morning in therapy, Aubrey was
put on the tilt table and just couldn't do it. It is not the strange
episodes she had before....her blood pressure is really shooting up
even at fairly small angles. They figured out through some
experimentation that her heel cords are getting so tight because she
has so much high muscle tone, and the stretching/stress put on her
ligaments from being in the standing position on the tilt table is
causing a lot of pain. They doubled one of her medications tonight
to try to losen her up some, so we will see tomorrow how that is
working. She may be sleeping all tomorrow! This afternoon she sat on
the side of the bed and turned her head toward a cross on the wall
when told, and partially turned her head in the other direction when
told. When getting up on the side of the bed, she helped kick both
her legs off of the bed. Other than that, it was just some stamina
exercises and stretching. She is having the same problem with her
left elbow, wrists, and hands as in her heels so we are trying to
deal with these other areas with splints. Hopefully she'll sleep
great with the new medication dosages...but still get out of bed in
the morning!
DocJana - 2/2/2003 at
11:05 PM
"Again, I tell you that if two of you on
earth agree about anything you ask for, it will be done for you by
my Father in heaven. For where two or three come together in my
name, there am I with them." Matthew 18:19-20
This weekend has been pretty calm. Saturday Aubrey had
therapy in the a.m., and tried to sleep through it! Then after her
shower, Adrena, our friend and hair stylist, came and trimmed Aub's
hair. (We want to keep it healthy for when she wakes up!) She rested
most of the afternoon and evening...it was definitely pampering
day...her Aunt Laura came and gave her a manicure and pedicure. I
may have mentioned that Faith spends the weekends here with us, and
Saturday night Brady and Chance attempted to as well. I had my chair
bed, and the three of them made pallets on the floor out of the way
of the nurses. Chance then started coughing about 1:30 in the
morning, so Brady got up and drove him back to Claremore! Maybe we
won't try that again soon! Today, she slept alot...and seemed to
watch some of the Hallmark Hall of Fame movie this evening...right
now she has fallen asleep, so I am going to do the same! She really
didn't do anything purposeful this weekend...just rested! Hopefully
this will be a BIG week!
DocJana - 1/31/2003 at
11:49 PM
"Therefore having been justified by faith, we
have peace with God through our Lord Jesus Christ." Romans
5:1
Aubrey had an easier day...the hospital was a
little short staffed today, so her therapy wasn't as intense.
Remember how the last two days she has kicked her leg off the bed
when told to while preparing to sit up in the chair? Well, today,
without being told, she kicked her leg off! Isn't that great? She
also TRIED to turn her head a few times, but didn't get very far.
Today was the first day they increased one of her medications which
CAN cause some slight sedation. She seemed very awake to us when she
needed to be, though. This afternoon we took her with the therapists
across the street to a little park in her chair. The fresh air HAD
to feel good...although Brady had her bundled up like an eskimoe!
Tonight a friend and nurse is with her, and she has been wide awake
for hours...it seems like she is watching TV! I never have it on,
but last week I wondered if she was bored, so I turned it on. Her
eyes seemed to find it quite quickly, and she appeared to watch it
for ~ 15 minutes before falling asleep. Last night, she was so
awake, I'd played CDs, talked to her, etc., so I thought why not? I
turned on ER...her eyes immediately went to it and stayed there for
30 minutes before falling asleep. I do wonder, not knowing what all
she is able to think or know, if she gets bored lying there. She
should have a pretty restful weekend...one therapy session tomorrow
and none on Sunday. Hopefully with low stimulation for the weekend,
she'll be ready to work hard next week! Have a blessed weekend!
DocJana - 1/30/2003 at
10:35 PM
"The Lord is the strength of my life!" Psalm
27:1
ANOTHER good day for Aubrey! Today in
morning therapy, the PT (Pam) asked her to kick her leg off the
bed...and she did very obviously. This afternoon, she kicked her leg
off again, and turned her head from one side to the other in
response to a command...FOUR TIMES!!! She worked VERY hard today,
and those things she did were a result of much effort. I'm very
proud of her! She also vocalized some more today...this has been a
really good week for Aubrey...her therapists are all excited...we
are so thankful for all your prayers for her continued progress as a
result of her being HEALED!
DocJana - 1/29/2003 at
11:38 PM
"And He has said to me, "My grace is
sufficient for you, for power is perfected in weakness. Most gladly,
therefore, I will rather boast about my weaknesses, that the power
of Christ may dwell in me." 2 Corinthians 12:9
I
missed last night's update because I fell asleep putting Faith to
bed! Aubrey has really had a good week! After Monday, which I did
update, she didn't sleep well again. BUT, Tuesday in therapy she
held her head really well, and vocalized ALOT...and it seemed very
purposefull, as if she was really trying to tell us something. Later
in the day, she was propped up on her right side facing the window
with her head on the pillow. Her regular day nurse, Rose, came in on
the opposite side of the bed behind Aub's back and started to talk
to me. Aub IMMEDIATELY turned her head all the way around to "look"
right at Rose! Rose stopped talking, Aub put her head back down, and
I said something. Rose replied and AGAIN, immediately, Aubrey turned
her head back around to where Rose was talking. Then a few minutes
later, Brady walked back where Rose had been. I don't know if Aub
saw him out of the corner of her eye or she heard him messing
around, because she lifted her head up about 3 inches and tried to
turn her eyes in his direction. She also had 2 gag reflexes
yesterday with her speech therapist which she has never had before.
Today, she tolerated the tilt table better, although didn't do
anything really responsive. She DOES seem more aware of her
surrounding this week. Her "blank" look seems a little less blank,
and she just seems a little closer. She is also starting to respond
more to what the speech therapist does with her face and mouth, and
is starting to make some facial expressions that she wasn't last
week. We think she's had a very good week. They did a little more
medication adjusting and she did sleep very well last night. We'll
see about tonight! Brady is spending the night with her...if she
blinks he's up checking her! Keep praying...I think she's on her way
"up" out of there!
DocJana - 1/27/2003 at
07:40 PM
"I endure all things for the sake of the
elect, that they also may obtain the salvation which is in Christ."
2 Timothy 2:10
Brady and I both prayed this
morning specifically for Aubrey to "do" something responsive (to a
command or verbal suggestion) as much for Aubrey as for ourselves.
We had a bit of a sad weekend, and really needed something
emotionally. So, today Aubrey did! It's been quite awhile, so we are
very excited and happy! During therapy this am while on the tilt
table (not up very far! they're taking the tilt table much
slower)...with the therapists present...Brady told Aub to turn her
head and look at him...twice. She did it...twice! Now, understand,
when I say "look"---it is a blank stare that may not even be
directly at him...the main thing is the turning of the head in
response to the command. Her afternoon therapy came only 1 1/2 hours
after ending the morning therapy, and she was still pretty tired, so
she just sat on the edge of the bed. She slept pretty well again
last night...she's still "sleeping in" in the morning though as
well! Being a regular teenager! Thank you for your prayers....maybe
tomorrow she'll turn her head thrice!!!
DocJana - 1/26/2003 at
06:40 PM
"But for you who fear My name, the sun of
righteousness will rise with healing in its wings; and you will go
forth and skip about like calves from the stall." Malachi 4:2
Aubrey has just rested all day. We started to put her in
her chair this afternoon, and she started falling asleep, so we just
let her rest. She was asleep by 12:30 a.m. last night! Yeah! She
also slept well the rest of the night. She's not done anything
purposeful today...has just rested or looked out the window. She's
cried during her shower the last two days...difficult to know why.
Hopefully tomorrow she will be rested and ready to respond in
therapy...it's difficult on the days that she does not
respond...something little each day helps with our hope! Hope your
day was wonderful...and blessed.
DocJana - 1/25/2003 at
11:54 PM
"Worship the Lord your God, and his blessing
will be on your food and water. I will take away sickness from among
you...I will give you a full life span." Exodus 23:25-26
Aubrey went to sleep around 2am, and slept well after
that. (She wakes up a little uncomfortable, but goes back to sleep
well after being turned.) She slept most of the morning again, and
seemed very peaceful. She had one therapy session today since it was
Saturday, and the therapist truly believes she moved her head in
response to two questions today. It seems so subjective to me, and I
couldn't tell. She did help with some movement during her stretches.
Last night I found her twice with her hand up by her trach...we'll
have to watch that! We really want everyone to pray that when it's
time to sleep, that she relaxes and is not uncomfortable. She had
LOTS of visitors today....cheerleaders, cheer coach, friends,
masseuse, prayer warriors, and family. Yesterday her choir
instructor and some choir members came and sang to her, and today a
prayer warrior with a great country voice sang as well. Aubrey
enjoys music so much, I know she was blessed by both of those
visits.
DocJana - 1/24/2003 at
09:54 PM
'"The Lord has heard my cry for mercy; the
Lord accepts my prayer." Psalms 6:9
It's been two
days since I updated, and Aubrey is doing about the same. She didn't
sleep well again Wednesday night, but she slept much better last
night....only getting uncomfortable a few times, and going back to
sleep after getting turned. Yesterday, she helped roll over a little
by pulling with her trunk, and she vocalized alot during
therapy....just made a lot of purposeful noises.... no words but
obviously knew she was vocalizing. Last night her head was turned
all the way to the left...I was telling a nurse a story about her
that only a mother would think was cute, probably NOT the
daughter...as I was getting to the "punch line" she turned her head
all the way to the right (where I was) and seemed to look right at
me....then scowled! I have never seen her move her head like that
while awake, and it just couldn't be coincidence! Today she got back
up on the tilt table....they took it MUCH slower---didn't go up as
high, kept her heart rate lower, didn't ask her to "do" anything
while up---and she did fine. Dr. Coldwell just thinks maybe a little
too much was being expected, so they are slowing down a little. Head
injuries are so sensitive to stimuli....fine balance of enough
stimulation vs. too much. They have taken her breathing treatments
from every 3 hours to every 6 hours, and is doing fine with that.
She coughed a few times this evening on her own...we'd like to see
more of that! She's been up all evening, so hopefully she's going to
sleep tonight! Please continue to pray for patience and peace! I
would also like special prayers to go out to the teenager that used
to have Aub's room...Shanna...she's fine, but had to go back to
surgery today because her brain shunt wasn't working properly and
fluid, therefore pressure, was building. Her functions had regressed
over the last 5 days, and we want that girl back walking and
laughing the way she's meant to. Thank you again for including her
in your prayers tonight.
DocJana - 1/22/2003 at
09:54 PM
Consider it pure joy, my brothers, whenever
you face trials of many kinds, because you know that the testing of
your faith develops perseverance. James 1:2-3
We
really need prayers for the three "P's": perseverance, patience, and
peace. We're trying our best, but sometimes it's pretty difficult.
Aubrey was given an antiseizure medication last night, not for
seizures but for the tremors. Also, she had trouble sleeping again.
They gave her 1/5 of the dose she used to get in PICU, and she slept
ALOT today as well as had very few tremors. When she was awake, she
was very alert, so maybe finding a balance with this medication
would help. We'll see what she does tonight with her sleep! Her
doctor recognizes that she seems VERY sensitive to any medication
that has sedative effects, so he is being very cautious, which we
appreciate. Today on the tilt table, she again was doing great,
alert, moving her head and both arms. After ~ 30 minutes, her eyes
suddenly got big again and her heart rate dropped again. The drop
was severe again, but the accompanying responses were not as severe
as Monday. She rested well later, and has been awake most of the
evening. She had another moment today with Brady where she seemed to
focus on him....again it only lasted a few moments, but it was
obvious. Hopefully, we'll start seeing more and more of that, until
it is the norm!!! Thank you again for your many prayers....your
spiritual support strengthens us daily.
DocJana - 1/21/2003 at
07:24 PM
"I will help thee, saith the Lord." Isaiah
41:14
Aubrey is turning into quite the night
owl....actually, she always has been! But I'M needing her to
go to bed earlier so that I can, too! We got to sleep about 2 am
last night, and her alarms did not go off like the night before, so
we actually slept a little more. Aubrey's head seems to be getting
more steady when she is up...not the entire time, but for longer
moments. She also seems to be leaning on the therapists a little
less when sitting. She didn't actually do anything very responsive
today. She is starting to get more tone, and sometimes it gets TOO
much and patients can't do as much because they are working against
their own contracture. It's a fine balance on the
medication...enough to keep the contracture at bay may also be just
enough to keep her too sedated to respond. Right now, we've not
increased her meds...I'm not sure at what point you actually start
trying to balance them. Her heart rate/oxygen saturation did great
today with no incidents. They are stimulating her with
tastes...today she tasted lemon, vinegar, and relish juice on cotton
swabs....we already know her favorite so far is the sweet
taste...typically, she'd pick a dill pickle over candy any day, but
who knows? The only way she's really responded to the tastes is she
"chews" more when she seems to like it...we[think] that means
she likes it! Tomorrow marks the end of the second week, and
although we want more sooner, we are happy with her progress thus
far. Hopefully, tomorrow will be a really responsive
day....that would be great for her and for Brady and I as well!
DocJana - 1/21/2003 at
01:14 AM
Answer me when I call to you, O my righteous
God, Give me relief from my distress; be merciful to me and hear my
prayer." Psalm 4:1
Aubrey did not sleep well last
night...she stayed wide awake and when she did sleep she only stayed
comfortable for about an hour....so far tonight it is going the same
way! I'm not sure if her nights and days are mixed up, or if she's
not sleepy, or if she really is uncomfortable. Her heart rate is
really sensitive to pain, and it doesn't seem to be slowing down
much, so we're going to try some Tylenol.
This morning
Aubrey got up on the tilt table again. This is her 5th time, and she
has always tolerated it very well. Her eyes were big and she was
blinking alot. We noticed that she seemed to move her eyes toward
the person talking to her, and she held her head up very well. She
frowned when Krista told her she was going to move her arm in a way
that Aubrey doesn't like, and she frowned when the speech therapist
put ice on her face, and moved her head away from her. After she had
been up for quite a while, she moved her head 3 times, really well.
We were all cheering her on, and suddenly her eyes got big, she
started gasping for breath, and her heart rate dropped from 130 to
55 in about 30 seconds. It was really frightening....they got her
back in bed, ordered an ECG and EEG....both appear normal. We don't
know if there was a pressure drop or seizure activity....but the EEG
DOES NOT suggest a seizure, although it looked like the beginning of
one. Even her early continuous EEG never showed any seizure
activity, so we really don't know what happened. She rested in the
early afternoon, and got up on the side of the bed later and did
fine. She responded to a few commands....move your head back to the
center, help move your legs off the bed, etc. She had to be helped
to do these things, but she did initiate some of the movement on her
own. This evening, Brady, Gaylyn (my sis-in-law), and I took her
outside for about 10 minutes...it was so beautiful today. She did
fine (we took the monitor with us). At one point Brady was down
talking to her and he said for a few moments she seemed really
there....he felt he even maybe saw recognition in her eyes, she
locked onto his, and began to vocalize....it only lasted a few
moments, but it was so moving to him....he says he hasn't seen her
look at him...AT him, not through him...in 8 weeks. So, except for
the unexplained sudden heart rate decrease and not sleeping well, we
had a really good day!
DocJana - 1/19/2003 at
04:04 PM
He said to me, "My grace is sufficient for
you, for My strength is made perfect in weakness." 2 Corinthians
12:9
I am sorry I haven't updated for a few
nights. I wait until Aubrey has really gone to sleep before I get
on, and it's usually very late. I've just been really tired and
didn't get on! She has had quiet days since Thursday. They have
decreased one of her tremor medications, and her tremors are a
little more present. They have then added a new medication, which
can make her feel a little sluggish for 5-6 days, plus she just
finished her first full week of therapy, and she's probably pooped!
It's important that "we" (ALL of us, especially me) remember that
there is no set pattern for recovery....and to be patient on those
quiet days and realize she needs extra rest for healing on those
days. I'm just ready for her to hop up and walk! She looks really
good....and her lungs are doing great. Today is a day of rest with
no therapy, and tomorrow we get back into it! Pray for great
things!!!
DocJana - 1/17/2003 at
12:39 AM
"I lift up my eyes to the hills--where does
my help come from? My help comes for the Lord, the Maker of heaven
and earth." Psalm 121:1-2
Well, today was a GREAT
day! She woke up brighter than ever, blinking quickly, finding our
faces more quickly (of course, she still looks somewhat blank....but
not as much when she's this "awake") When Brady got here this
morning he told her to squeeze his hand and she immediately
did....that made his day! Her lips quivered twice when he told her
to smile. She had quite a bit of stretching during morning therapy,
and then got in her chair again for about an hour....again, she
cried quietly when put in her chair, but not for as long today.
During her "walk", Brady was talking to her and she started moving
her mouth--ALOT-- and making noises. During that time she maintained
some pretty definite eye contact. Gail Algeo, a friend, came and
gave her a full body mbottomage this afternoon before her
second therapy session. In the afternoon sessionl, her PT told her
to look at her hand....she did. Then she told her to pick up her
hand and place it on the PT's leg....she did! Then she told her to
put it back on her own leg...she did! Then they did the same on the
other hand/leg! That was awesome, awesome, awesome!!! This was her
best day ever, and we're so thankful! Of course, it was alot of work
for her, and she was VERY shaky when moving....but she did it! What
matters is that she received the information and responded
appropriately. Thank you all for your prayers and uplifting words! I
wonder what tomorrow will bring??????
DocJana - 1/16/2003 at
12:43 AM
"Rejoice in the Lord, always: and again I
say, Rejoice. Your kindness shall be known to all...the Lord is
near. Have no anxiety at all, but in everything by prayer and
petition, with thanksgiving, make your requests known to God. Then
the peace of God which surpbottomes all understanding will guard
your hearts and minds in Christ Jesus." Philippians 4:4-7
Rick, one of Aubrey's nurses, gave me this verse
tonight, and it fits perfectly with our day. Sometimes I may even
repeat a verse if it seems to fit that day's situation.
Sometimes it is hard to truly rejoice when faced with
heartache. This verse was a reminder to me tonight. Aubrey had her
usual busy day, therapy in the morning, shower time, therapy in the
afternoon, etc. Only today she didn't really "do"
anything....nothing very responsive. BUT...she is alive again today
(rejoice!), she is breathing on her own without oxygen (rejoice!),
her internal body is healthy and her lungs are healing (rejoice!),
she has a new wheelchair which allows her to be mobile (rejoice!),
she is resting very well most of the time(rejoice!), and her family
is healthy and able to spend time with her (rejoice!). If we think
about all these positive things, we can't help but have God's
peace....sometimes we just need to be reminded of how far we've come
in the last 8 weeks....literally from death. It is hard to be
patient some times! I am amazed continually at the people who are
praying for Aubrey....your love, encouragement, and prayers are
invaluable....every note written brings me joy each day, I'm sure
more than any of you can truly imagine. Thank you.
DocJana - 1/14/2003 at
07:55 PM
"I can do all things through Him who gives me
strength." Philippians 4:13.
We had another busy
day! Aubrey slept in until 10 am, and soon after the PT, OT, and
speech therapist arrived. Her new, reclining wheelchair came in, so
we put her in it. As soon as she was in it, silent tears started
streaming down her face...it broke my heart. I tried to explain to
her that if she was aware enough to understand the wheelchair, then
that was actually wonderful and a great sign...still, it took her a
few minutes to quit crying. Her speech therapist talked to her,
telling her how pretty she was (she is getting a lot of that around
here!) and asked her 3 times to smile for me...each time, the
corners of her lips quivered upward on both sides. She stayed in her
chair for 1 1/2 hours, and I gave her a big tour of the facility.
(It's f actually pretty small but nice). Afterwards, she went for
her "salon treatment"---shower, shave, hair, lotion, etc. She had
just fallen asleep and they came in and did an ECG for her heart
again. Then it was back to therapy! When rolling her out of bed,
they told her to swing her legs off the bed. The PT held her legs,
but she slowly moved them off the bed! They took her in her chair
down to the gym, where she curled her fingers when asked to make a
fist! They worked some muscle groups, and had her sit up for a
while. I was very proud of her today! After therapy, her teacher
came by (she has a teacher 4 evenings a week now....we're really not
doing anything yet, but it's so nice that they are planning it!) She
took about an 1 1/2 hour nap this evening, and is back awake. I've
been dropping 1 drop at a time of cranberry juice on her
tongue....she really seems to love it. I'm hoping she'll be awake
for a while, then have a great night's sleep! It's really hard to
grasp, but she is still not considered fully conscious....it's all
degrees and levels. Anyway, looking forward to that first real look
of recognition!
DocJana - 1/14/2003 at
01:06 AM
"The prayer of a righteous man is powerful
and effective." James 5:16
Aubrey was a busy bee
today! This morning she was back on the tilt table, almost vertical.
She didn't touch her nose today, but she did some light hand
squeezing. Her therapy lasted about an hour this morning, then off
to the showers....another long session but well worth it, I'm sure!
She had just fallen asleep around 1pm, when the new speech therapist
came in and talked to her and spent some time bottomessing
her. After she left, the PT and OT were back and had her up by the
side of the bed working with her. She was so tired by the end of the
session that she was literally falling asleep during the
session...they decided to put her on her tummy! The first time in 7
1/2 weeks! They turned her over, positioned some pillows and she was
out for the count. Took a deep 1/2 hour nap, and when she woke up,
she bent her knees and laid with her legs bent back towards her
bottom. That was a new movement! She had visitors this evening, and
really hadn't slept much. Tonight about 11 pm, I put a drop of
strawberry dessert "juice" on her tongue and she really seemed to
enjoy it. She started really working her mouth...her nurse was in
there and I told her what happened. I was speaking to the nurse and
said, "I wonder if she wants some more..." and Aubrey immediately
picked up her hand and moved it about 4 inches towards me! That was
awesome....I don't believe it was a coincidence...she also squeezed
my hand some tonight. Anyway, another good day, with teeny, tiny,
HUGE baby steps! Her new teacher (they are enrolling her in Tulsa
Schools...I don't quite understand it all yet) has suggested playing
her favorite movies....so....it's "Grease" tomorrow! Well, she's
asleep now, which means I'd better try to sleep as well. Please keep
praying for Aubrey, and also for Brady and I to stay physically
strong...we're a little tired! Thank you!
DocJana - 1/11/2003 at
07:30 PM
"And Jesus looking upon them saith, 'With men
it is impossible, but not with God, for with God all things are
possible.'" Mark 10:27
Aubrey is sleeping so well
most of the time! She is actually sleeping more, but I think that is
because of the increased activity. She had another shower today, and
had one physical therapy session this afternoon. After her
exercises, Pam (P.T.) put her back on the tilt table starting
horizontal and ending vertically for a total of about 40 minutes.
Again, she did really well and her blood pressure stayed very
stable. When I explain these responses, please understand that I can
almost not even see or feel them, they are so slight. But I guess
that's why we have therapists that know how to interpret these
things! She touched her nose 4 times on command (this means, with
her hand held 1/2 inch from her nose, she bent her finger to her
nose and touched it.) It was so slight, I questioned it...but her
therapist said it was definitely responsive. When told to squeeze
our hands, she lightly bent her fingers several times. She would not
"track" a mirror with her eyes, however. When we had her back
horizontal and getting ready to put her back in bed, she was
blinking a lot, and took her hand from the side of her hip and
raised her ENTIRE arm (upper and lower) and bent it up towards her
head. She has never made this movement before in this direction.
There was no verbal command, but the PT was really excited. We count
this as another great day! She has been sleeping peacefully ever
since....and hopefully will through the night. Tomorrow is a day of
rest for Aubrey....as it should be for all! Take care.....we love
you.
DocJana - 1/11/2003 at
01:00 AM
"For with God nothing shall be impossible."
Luke 1:37
From Brady: I want to thank every one
that has stood and continues to stand in agreement with us for God's
power and spirit to be physically manifested in Aubrey. We praise
Him for her healing.
Thank you for your patience! I still do
not have the internet hookup yet, but was able to update tonight
away from the hospital.
Aubrey did move Wednesday...remember
how beautiful it was? Brady went with her in the ambulance and he
said when they took her outside she seemed brighter than she'd been
yet. She tolerated the move well, and rested that day. BUT! Thursday
morning was work time! They sat her up on the side of the bed,
similar to the way her physical therapist, Andrea, did at St.
Francis. Her feet did not turn purple, and she seemed to be
supporting her head a little. Then....this is big....she got a
shower! They have a special "shower bed" where she gets a shower
lying down in a big shower room. After 7 weeks, this had to feel
incredible. She tolerated this well, also. She rested for a while
after her shower, then they came and put her on a slant board...she
went (gradually) from horizontal to vertical on this special board
(belted in, of course) and she - again! - tolerated this very well.
They said she did better than expected. Brady was standing opposite
of her bed at one point while she was sleeping, and Aubrey turned
her head a full 180 degrees from one side of the pillow to the
other...she's never turned her head this much. Also, while she was
on the slant board, she squeezed Brady's hand, then held her hand in
position without Brady's help. Now, this was not in response to a
verbal command, but still something. Today, she had therapy
twice...her therapists felt like she was responding some, although
she is so weak, her physical response was so hard to see. One thing
I DID see was when they asked her to move specific arms, she didn't
move them but it was obvious by the shaking of that limb that she
was trying. She did this several times, and ALWAYS seemed to be
trying to move the hand/arm they asked her to. They are stimulating
her with certain smells, pet therapy, etc. Her shoulder joints seem
to be pretty lax, so they've ordered her some shoulder
splints....she also has a reclining wheel chair coming for
transporting. She is dressed in HER clothes each day, and wears her
own pajamas at night. That is very nice to see...and I know she has
to feel better. I know this coma situation is hard to
understand...it's all about levels of consciouness. Even though her
eyes are open, and she SEEMS to be somewhat aware (which I think she
is), her level of consciousness is not such that she is considered
truly "awake". There are times that she seems like she is RIGHT
THERE but can't get out...we've met several of the kids in the
unit---2 current ones are teenage girls who have been in comas---and
it's very inspiring. They have to work so hard for everything we all
take for granted....I just love them all already. Tonight, would you
take some time to say a prayer for some little ones (and not so
little) that we have met over the last several weeks? Wesley,
Daniel, Jasmine, Quade, Jason, Dylan, Markel, Shanna (she walked out
of the rehab center today after being in a coma for a long time!),
Heather, Jennifer, Mitchell, Ryan, Shantana, and Amelia. Not all
these children have the support and love we do, and I would love to
feel that everyone who is out there praying for Aubrey is also
praying for them...how awesome! Thank you all!
DocJana - 1/7/2003 at
10:50 PM
"When you pbottom through the waters...they
will not sweep over you." Isaiah 43:2
I
keep intending to send out thank you notes, and you would think that
I could get that done with so much time spent at the hospital in a
chair. But I haven't, and I wanted to let everyone know who sent
food, baskets, stuffed animals, water, fruit, plants, balloons,
cards, and money....we are so grateful and appreciative to each of
you....schools, Sunday school clbottomes, history
clbottomes, wrestling meet contributors, cheerleaders,
individuals...thank you so much for being so thoughtful...each of
you touched our hearts.
Aubrey had another good
day...nothing really new, but more of the same "stableness". They
have turned her oxygen down to almost none, and she is still
saturating well...hopefully she can get completely off the oxygen
supplementation...that would make it easier at rehab. She is
scheduled to move tomorrow if all goes well. They say the move can
be stressful on her...not just physically but the new environment as
well. Please pray for a smooth, peaceful transition. I'm not sure
what the computer status will be at CMC, but I will do my best to
update tomorrow night with good news!
DocJana - 1/6/2003 at
11:50 PM
"Now faith is being sure of what we hope for
and certain of what we do not see." Hebrews 11:4
For those of you who do not know us personally, we named
our youngest child, Faith, after this verse. She was born 16 weeks
premature....and we believed God would save her and heal her....and
he did. We believe this same verse for Aubrey daily. We know she is
healed and we rest in that bottomurance.
We moved to
a room on the pediatric floor yesterday evening....the doctors
thought it would be good to have a transition phase before going
over the CMC. She is doing well and had a good day. She moved both
her arms during physical therapy....not in response to a command,
but still SHE was moving them purposefully herself. We also sat her
up on the side of the bed with the therapist and ourselves
supporting her, and she tolerated it very well. We just feel every
day is a little better....and we look forward to her move when she
is stable (possibly Wednesday) to Children's Medical Center to
continue her healing process. As always, thank you for your prayers!
We are blessed!
baldies - 1/5/2003 at
10:14 PM
Jana doesn't have access to the internet, so she will not be
posting an update until tomorrow. This is good news, because Aubrey
has been moved out of ICU for the first time, since Nov 22nd.
DocJana - 1/4/2003 at
11:21 PM
"I will lift up my eyes to the mountains;
From whence shall my help come? My help comes from the Lord, Who
made heaven and earth. He will not allow your foot to slip; He who
keeps you will not slumber." Psalm 121:1-3
Aubrey
is still doing well...they are decreasing her oxygen pressure, so
that tomorrow or Monday she should be back on just the trach collar.
She has not moved her hands as often, but when she does, she moves
them farther. Today she moved her entire hand and forearm upwards,
then set it back down. She continues to rest alot, but when she's
awake, is blinking and swallowing more and more. We are very ready
for some responsive actions! Back on schedule for CMC possibly
midweek if all goes well off the vent. God's blessings!
DocJana - 1/3/2003 at
09:16 PM
"Sing...to the Lord, always giving thanks to
God the Father for everything." Ephesians 5:19-20
Aubrey continues to do well! They have taken her off the
ventilator, but are still providing her with some pressure before
they try her strictly on her trach collar. All her values are doing
great! The nurses and respiratory techs ALL agree that Aubrey seems
more "alert" yesterday and today....sometimes when we talk to her,
she moves her mouth and seems to be moving her eyes toward ours. Of
course, she is still resting alot, and these movements are not
constant. We are VERY excited about her progress the last few days,
and thank you all again for your prayers!
DocJana - 1/2/2003 at
04:02 PM
"And the prayer offered in faith will make
the sick person well; the Lord will raise him up." James 5:15
I'm sorry about not updating yesterday....I couldn't get
the internet at the hospital. They were very nice and reset
everything today for me.
Aubrey is doing well...all enzymes
are getting back to normal, heart/lungs looking good, normal
temperature still. She is still raising/stretching her hands,
sometimes feet on a regular basis. She raised her knees today, and
turned her knees inward twice while being "messed" with. She
appeared to move her eyes to line up with mine while I spoke to her
5 times today....she is moving her lips/mouth more and more....still
not actually doing these things in response to a verbal command. I
think we are lining up with CMC again for early next week if things
continue to go well....I'm taking it one day at a time! Hope
everyone had a great day yesterday....take care!
DocJana - 1/1/2003 at
01:52 AM
"Then shalt thou call, and the Lord shall
answer; thou shalt cry, and He shall say, here I am." Isaiah
58:9
We are never alone....and neither is
Aubrey....a precious friend gave me this verse- as usual - just when
I needed it. Aubrey continues to rest....her swelling is slowly
decreasing, her temperature and heartrate continue to be normal, and
she seems very much at peace. She stretched her fingers and lifted
her hands just a little again today....it's nice to see slow, easy
movement regardless of the cause. I want to thank everyone for
praying for the fever and the elevated heart rate....it stopped very
suddenly and she has rested so nicely since then!Hope this New
Year's Eve finds everyone safe and looking forward to a blessed New
Year.
DocJana - 12/30/2002 at
11:45 PM
"God calls things that don't exist yet as if
they already existed." Romans 4:17
It's 11:30 pm
and Aubrey is still resting. She's been "awake" very little today,
but she needs her rest. When she was awake, she did some interesting
things. Her physical therapist said Aubrey "tracked" her with her
eyes once, and her nurse thought Aubrey was also more aware of her.
Tonight, she lifted both her hands up about 1/2" and stretched her
fingers....then went back to sleep! Remember...every little thing!
She is still retaining fluid, but her heartrate/oxygen
saturation/blood pressure, etc. still remain good levels.
I
know I've spoken this to friends, but please remember to pray for
these sweet nurses and incredible doctors that are working with her.
They are awesome, but they are human and need to be lifted up as
well.
As always, thank you. Brad, my brother that set up the
website, is out of town....so if you want to e-mail me, send it to
jana@aubreyrobbins.com....not to the webmaster. I THINK I will get
it that way. If you don't hear back, well, I may have messed up!
God's blessings to each of you.
DocJana - 12/30/2002 at
01:25 PM
I will do a regular update later....just wanted to make sure our
prayer warriors are praying....Aub is having a different day....her
numbers on the machine are good, but she is edematous (retaining
fluid), along with a few other changes. Please pray that this will
all get resolved soon....she is resting ALOT! Thank you.
DocJana - 12/29/2002 at
09:42 PM
"Do not fret." Psalm 37:1
Worrying accomplishes absolutely nothing
positive....and does nothing to change the results. I try to
remember this when my human mother side creeps in!
Aubrey
had another good day....lots of rest. Her temperature is staying
normal, heart rate is calm, and oxygen saturation is great (of
course, she is still on the vent.) One of her physiatrists came in
yesterday and today from CMC (rehab doc), and he was very
uplifting...said not to stress on not getting to rehab right
away....concentrate on her getting stronger and healing. Praise the
Lord for two, consecutive, restful days!
DocJana - 12/28/2002 at
09:21 PM
"He himself bore our sins in his body on the
tree, so that we might die to sins and live for righteousness; by
his wounds you have been healed." 1 Peter 2:24
Aubrey had a very restful day on the ventilator. Her
temperature came down to below 101F, she did not perspire, she slept
alot, and when she was awake she blinked alot. She had become
somewhat dehydrated, her electrolytes were abnormal. I guess it was
all a little too much for her. We are just thankful that she is
resting.....as we've said, when she's resting we believe she is
healing.
For those of you that have not had the opportunity
to visit Aubrey, we want you to know she looks beautiful....she's
kept her naturally rosy cheeks, her glowing skin, and those soulful
eyes.
This is the first night in over 5 weeks that Brady and
I have both come home to spend the entire night with Chance and
Faith. Brady's sister, Laura, is spending the night with Aubrey in
PICU. We also wanted to thank you again for visiting her website and
signing her guestbook or forum....it is really uplifting to visit
the site in the middle of the night and feel like we have friends
right there with us because of the messages. Thank you again. We're
gearing up for the road ahead and for Aubrey coming home!
DocJana - 12/28/2002 at
01:39 AM
A second update for today/night: it's close to 1:30 am...Aubrey
started having oxygen saturation problems again tonight with rapid
respiratory rate....chest radiographs looked better than this a.m.,
but they went ahead and put her back on the ventilator. Her
electrolytes were a little off as well, so they've made some overall
changes in fluid balance, no feeds for awhile, back on vent,
etc....there is a good chance she will not go to rehab on Monday
since she's having a bit of a bad weekend thus far. She is much more
comfortable now on the vent than she was earlier tonight. Maybe she
just needs a little extra help this weekend....keep praying!
DocJana - 12/27/2002 at
12:10 PM
"Will you not revive us again, that your
people may rejoiced in you? Show us your unfailing love, O Lord, and
grant us your salvation." Psalm 85:6-7
This is an
earlier than usual update, because of some changes. Aubrey was to
move to CMC today, but she had a little trouble keeping her oxygen
saturation levels up last night. They took a chest film, and she has
some atelectasis (collapse) one one of her lung lobes. This is not
unusual for someone in her condition, but it does mean that she
needs a little extra help inflating her alveoli (air sacs) for the
next few days. We will re-evaluate on Monday, and see if she's ready
to move. Also, the insurance is questioning the move a little
again????and so we are waiting to hear from them. Yesterday,
everything was fine with them, so hopefully, this is just a
paperwork thing. Her temperature is ~ 103.2F, she is perspiring a
little today, and again stayed up all night. She is semi resting
now, and hopefully will get some sleep today. Please remember to
pray for the healing of her basal ganglia...it is very important for
the transmittal of all the signals that go to the different areas,
as well as motor, speech, etc. We are ready to get to rehab to give
Aubrey every available opportunity....thank you again for your
continued prayers.
DocJana - 12/27/2002 at
12:10 PM
"Will you not revive us again, that your
people may rejoiced in you? Show us your unfailing love, O Lord, and
grant us your salvation." Psalm 85:6-7
This is an
earlier than usual update, because of some changes. Aubrey was to
move to CMC today, but she had a little trouble keeping her oxygen
saturation levels up last night. They took a chest film, and she has
some atelectasis (collapse) one one of her lung lobes. This is not
unusual for someone in her condition, but it does mean that she
needs a little extra help inflating her alveoli (air sacs) for the
next few days. We will re-evaluate on Monday, and see if she's ready
to move. Also, the insurance is questioning the move a little
again????and so we are waiting to hear from them. Yesterday,
everything was fine with them, so hopefully, this is just a
paperwork thing. Her temperature is ~ 103.2F, she is perspiring a
little today, and again stayed up all night. She is semi resting
now, and hopefully will get some sleep today. Please remember to
pray for the healing of her basal ganglia...it is very important for
the transmittal of all the signals that go to the different areas,
as well as motor, speech, etc. We are ready to get to rehab to give
Aubrey every available opportunity....thank you again for your
continued prayers.
DocJana - 12/26/2002 at
10:29 PM
"The heavens praise your wonders, O Lord,
your faithfulness too, in the bottomembly of the holy ones." Psalm
89:5
We had an incredible night with Aubrey last
night. She has been so out of it with this fever, and although she
still was running ~103.5, she didn't seem stressed or flushed at
all. She LITERALLY stayed "awake" all night. We "talked" tons, she
listened on her headphones to oldies again, and she just seemed
better. At 6 a.m. I sat down on the cot while they were turning her
and immediately fell asleep! It was just so nice to have her awake.
I mentioned the "sighs" before....during the night I put an ice chip
on her tongue 6 times....every time she gave a big sigh. The only
other time she sighed like that was when "Unchained Melody" came on
her headset....she sighed big then....she loves that song, as do
Brady and I. We also had some very good news today. The BAER test
(brain auditory evoked response) was completely normal. What that
means is that she could hear everything that they presented to her,
and her brain waves responded with a normal pattern (although her
face showed no change in expression, of course.) The doctors are
quick to point out, of course, that they do not know how she is
bottomimilating what she hears. Also, she had her MRI today.
Mixed results....her cerebrum (higher brain function in terms of
reasoning, memory, etc), cerebellum, meninges....all were free of
any hypoxic/anoxic lesions, no atrophy, and no swelling. Her basal
ganglia, however, did have some ischemic lesions (seen with hypoxic
injuries...lack of oxygen). The basal ganglia is responsible for
motor function....speech, limb movement, tremors, etc. The basal
ganglia is also the most sensitive to hypoxia....so if there was
going to be an injury, it would affect this area first. We are just
so thankful that the other areas look good.....we are believing with
all of you that she is going to break out of this silence, that her
basal ganglia WILL heal, and that God will use rehabilitation to
strengthen her muscles and learn how to use them again. Thank you
all again....we love you.
DocJana - 12/26/2002 at
12:45 AM
Christmas 2002
"We have become partakers of Christ if we
hold the beginning of our confidence steadfast unto the end." Heb
3:14
This verse is a promise to us, especially on
those days, sometimes lonely nights, when we wonder what lies ahead.
Aubrey has continued to run a fever, although it did drop to 101.5
for a few hours today. During that time, she kept her eyes open and
seemed a little "lighter" than she has been recently. Tonight she is
at 103.5, but doesn't seem as stressed as usual at this temperature.
Her eyes are about halfway open, and moving a little. I put on 106.1
FM tonight on her headphones (the Tulsa Firefighters brought her a
headset with cbottomette/radio) and she listened to Christmas
music. I think she can listen better through her headphones, but, of
course, we play her music in her room most of the day. They are
increasing her calorie count/hour....she was getting 2400
calories/day, but has still lost quite a bit of weight. I've been
putting ice chips on her tongue, and we recently started putting
different scents under her nose and using a nerf ball to squeezing
her hand over it. A few minutes ago I put an ice chip in her mouth,
and she sighed big. That makes me happy feeling like she gets some
contentment from these little things. Tomorrow she should have the
rest of her neurological tests done, and then probably move to
Children's Medical Hospital out of Hillcrest on Friday. We hope your
day was incredible....remember, it's the birth of Jesus that gives
us hope tonight for Aubrey.
At this point the postings are in normal
order
cpestel - 12/15/2002 at
04:22 PM
Friday, December 13, 2002
Be joyful in hope, patient in
affliction, faithful in prayer. Romans 12:12
Aubrey is still
breathing on her own. The doctors are giving her a little oxygen to
help her but they are simply laying the oxygen mask next to her
tracheostomy. She is doing all of the work by herself.
She
is starting to stretch and wiggle her toes without being tickled or
pinched. Jana and Brady believe God is working his will and this is
a sign of her recovery. The doctors are not acting like this is a
big deal.
The tremors are still present and the intensity
seems to come and go. Jana reports that they seem to be more mild
with the new medication they are giving her.
cpestel - 12/15/2002 at
04:23 PM
Saturday, December 14, 2002
Heal me, O Lord, and I shall
be healed; save me, and I shall be saved: for thou art my praise.
Jeremiah 17:14
Aubrey had a rough night last night. She
struggled to breath on her own and the doctors had to put her back
on the ventilator.
They gave her a mild sedative so she was able
to rest today.
DocJana - 12/15/2002 at
10:10 PM
"Then your light will break out like the dawn, and your recovery
will speedily spring forth; and your righteousness will go before
you; the glory of the Lord will be your rear guard." Isaiah 58:8
Aubrey has been sleeping most of the time since being put
back on the ventilator. Her tremor medication has been increased to
3 times daily, with the actual dose double what it was before. She
STILL tremors when awake, but not as forceful as before. She gently
moved her head partway last night twice, and today flexed her left
foot twice. She is not perspiring as much, but does have a
persistant fever again, probably due to a new lung infection. She
does seem to be responding to the new antibiotic, however. Without
all the tape and tubes coming from her mouth, she is looking more
and more like sweet Aubrey.
cpestel - 12/17/2002 at
07:52 PM
God has not given us the spirit of fear, but of power and of love
and of a sound mind. II Timothy 1:7
Aubrey was taken off of
the vent this morning at 9:05 a.m. She has an oxygen mask lying next
to her trache to give her a mist of oxygen but she is breathing on
her own. The tremor medication and dosage level seem to be working
for her. Jana said the “tremors are present but are much lighter
than before”. She is resting peacefully this evening.
DocJana - 12/18/2002 at
08:33 AM
"Therefore, strengthen your feeble arms and weak knees. Make
level paths for your feet, so that the lame may not be disabled, but
rather healed." Heb 12:12
Aubrey has been off the ventilator
now for over 36 hours and is doing very well. Her oxygen saturation
levels are remaining high, and she doesn't appear to be struggling
like before. All else remains the same, EXCEPT...during the night
she was propped in an unusual position with her right arm placed
oddly, and perhaps uncomfortably. She began to move her arm, and
eventually, although quite shakily, placed her arm in a more natural
position. When I saw what she was doing, I took her other hand and
said, "Aubrey, if you can do that you can squeeze my hand,"....but
she didn't. However....she had never purposefully moved a body part
that much, and we were very excited! We look forward to the day she
actually responds to a specific voice command....that day is coming!
Thank you all so much for your prayers....we are so touched
and blessed by all of you.
DocJana - 12/19/2002 at
11:33 PM
"If the Lord delights in a man's way, he makes his steps firm.
Though he may stumble, he will not fall, for the Lord upholds him
with his hand." Psalms 37:23-24
I'm sorry I missed the
update last night. Aubrey has been running a fever for about 36
hours, and is not responding well to Tylenol or Motrin. They have
her under a cooling blanket and are also putting ice packs under her
arms. The night before she started running a fever, the nurses were
turning her over and she put her hand out as if to keep herself from
falling! Also, the nurses watched her on the monitor throughout the
night occasionally lifting her hands off the bed. Another
progressive area is her coughing. She has started coughing a little
on her own, and is starting to swallow some. These are all good
things and necessary to progress to the next level. Today, they
performed a venous doppler on her to check for bloodclots since she
has been down for so long. We should get those results tomorrow. We
are still waiting on her custom tracheostomy tube, and once that is
in they will do another MRI, EEG, and an evoked response test on her
brain. Please pray specifically for wonderful reports on these
tests, and also that her fever, whatever the origin, will subside.
Thank you again for making this journey a little gentler with your
loving support.
DocJana - 12/20/2002 at
12:12 AM
I just finished reading the discussion and guestbook. I haven't
been able to access a computer in a few days, and was overwhelmed at
the messages. I am so touched and in awe of all of you. How can
anything BUT a miracle occur with this kind of prayerful support?
Your messages help me in my quiet and lonely moments....thank you
all so much. Also, please continue to pray about the insurance....it
seems we're not quite settled with them yet.
DocJana - 12/20/2002 at
10:10 PM
"Lord God, I will shout for joy when You make
me victorious, and I will lift up a banner in the name of God!
Please, Lord, grant these request! (Psalm 20:5)
Aubrey still has a fever today, but not as high
as it has been. The doctors called in a infectious disease
specialist. He doesn't belive this is a problem, but he is running
some test to be sure. The nurses sat her up in a neuro chair for 45
minutes, which she seemed to tolerate well.
Tonight while
Brady brushed Aubrey's teeth, she seemed to blink quicker, swallow
more, and moved her tongue more. Afterward I showed her a new zebra
and sat it on top of Brady's head. Aubrey's eyes immediately tracked
up to the zebra and settled there. This seemed to be purposeful.
Her tracheostomy tube is not supposed to be in till Tuesday.
Once this is in, they will perform numerous neurological tests.
Please pray for these test to be normal and responsive.
As
always, we are blessed by your support.
[Edited on
12/21/2002 by baldies]
baldies - 12/22/2002 at
10:59 AM
"But thanks be God! He gives us the victory
through our Lord Jesus Christ." I Corinthians 15:57
Jana said that Aubrey remained stable on Saturday, with
little activity or change. However, Aubrey did have more mouth
movement than usual.
Jana and Brady have interviews today
with Channel 8 and Channel 2. So look for those stories this evening
on the respective stations. Fox23 aired a story last night.
Jana will be posting later this evening.
cpestel - 12/23/2002 at
11:08 PM
The Lord is faithful, and he will strengthen
and protect you. II Thessalonians 3:3
Aubrey has
been sleeping most of the time for the past several days. This is
probably due to the high fever she has been running. The doctors
have been trying different medications and they do not seen to have
an affect. The latest theory is that Aubrey’s internal thermostat is
out of whack.
They performed a hearing response test today.
Jana and Brady are asking everyone to say an extra prayer tonight
asking for a positive result. The test uses an EEG to measure brain
activity while administering audible tones at various frequencies.
The results of this test should be available tomorrow.
The
permanent trach tube has not arrived. This is delaying some of the
rehab that is planned for Aubrey.
Jana asks that everyone
pray and ask for a lower temperature. The high temperature seems to
be making Aubrey uncomfortable.
DocJana - 12/24/2002 at
04:43 PM
"Glory to God in the highest, and on earth
peace to men on whom his favor rests." Luke 2:14
Aubrey is continuing to run a fever...now going on
several days. It is usually between 103.5 and 104. Her new custom
tracheostomy came in today! Her surgeon replaced the old one with
this new one, and it fits much better and certainly looks more
comfortable. The physical therapist sat her in the neuro chair again
today, but she did not tolerate it as well, and her oxygen
saturation did not stay high enough. Friends came and played the
guitar and sang beautiful Christmas songs this morning to her....it
lifted me up, and I feel like Aubrey was listening. We still do not
have the results of her brain response test....we may not know them
until Thursday. She is scheduled to be moved to Children's Medical
Center sometime Friday. Please....pray for a smooth transport and
peace of mind with this new step. We care and love all of you....and
pray that you have a blessed day tomorrow spent with your loved
ones.
DocJana - 2/14/2003 at
08:27 PM
"Come unto me, all ye that labour and are heavy
laden, and I will give you rest." Matthew 11:28
It looks like this will be my update for today. The library closes
shortly, and for some reason, an error or something, I can't get
online in my room as of last night.
Aubrey had another restless night...she is having these autonomic
storms that seem to keep her awake and agitated from midevening to
middle of the night. Last night she would go to sleep, then wake up in
10 minutes with her alarms going off because she was sweating and had
increased heart rate. She has not had afternoon therapy yet, but this
morning she did well on the tilt table. I believe she tried and
started to turn her head towards me when asked, but then gravity took
over and she let it fall! Anyway, she's getting dressed in her
Valentine's jammies....she's not going to the floor party because
there are so many kids it would probably over stimulate her. BUT she's
getting lots of hugs and kisses from us....and I know her mind and
heart are bombarded from Valentine's wishes from all of you! Have a
wonderful, loving day!
DocJana - 2/16/2003 at
01:24 AM
"I will lift up mine eyes unto the hills, from
whence cometh my help." Psalm 121:1
Aubrey had a rough morning...lots of "tone", elevated temperature, and
perspiring...her doctor doubled one of her medications for spasticity
(tight muscles, contracture) and right now she is sleeping well. It
may make her fairly sedated...we don't know yet, but she can't
continue like she was this morning. We'll see if she acclimates to the
new dosage over the next few days. We still do not know about
Houston...her doctor here, whom we LOVE, thinks it would be a good
idea...we're just waiting on the new facility to review everything,
and then, of course, the insurance. I will let everyone know as soon
as I know! Pray for a restful day for Aubrey tomorrow...and that she's
not too sleepy Monday for therapy! Have a great weekend.
DocJana - 2/17/2003 at
04:57 AM
"Paul said, 'I am convinced that neither death
nor life...nor anything else in all creation, will be able to separate
us from the love of God that is in Christ Jesus our Lord.'" Romans
8:38-39
Today started with a lot of "storming" and ended with alot as
well...in between, Aubrey rested well! No therapy since it is
Sunday...it is so hard to see Aubrey appear so uncomfortable and full
of panic and not know why....it could be the stage they go through as
they get more aware and they become more agitated...she just seems
worse in this aspect the last few days. If it means she's becoming
more aware, then hallelujah and let's get through it!
DocJana - 2/18/2003 at
04:59 AM
"I have learned, in whatsoever state I am,
therewith to be content." Philippians 4:11
I would be untruthful to say I have reached this state in my life...I
am not content with this situation, but I am striving to find a
measure of God's peace to get me through....until Aubrey is laughing
and walking and eating and experiencing joy again. She slept lots
again today...I don't think she's in control of the sleeping! During
therapy this morning she lifted her head a few times on her own, and
twice turned her head from looking right all the way to the left when
someone started stretching her left arm. She tolerated the tilt table
very well and didn't seem stressed at all...of course, she has a few
medications on board! She slept through her speech therapy, which at
this point is mainly oral stimulation. She had a few,short episodes of
storming tonight...but they were gone very quickly and she has been
resting well...much better than recently. Hopefully, this will
continue through the night so mom can get some rest, too! We're still
waiting to hear the final verdict on Houston....the admissions nurse
called today and was so sweet...said they had been reading her website
and spoke so nicely about Aubrey. Well, I spoke too soon...her alarm
is going off!!
Maybe a
quick position change will be all we need....I've got to go!
Goodnight!
DocJana - 2/20/2003 at
04:49 AM
"Be joyful in hope, patient in affliction,
faithful in prayer." Romans 12:12
I had to update on the guestbook last night because for some reason I
couldn't enter the forum. Check there for last night's update!
Aubrey only stormed for no more than an hour yesterday evening, and
rested well (except for being uncomfortable and needing turned) for
most of the night. Today and until now, she has not stormed at all!
She has slept quite a bit but when awake, she's seemed a little
brighter...finding my face more when I'm speaking, seeming to
look and pay attention to her flashcards, etc. In therapy she held her
head up and level twice...one time for 45 seconds which is a record
for her. She found the therapist's faces while they worked on her, and
seemed to gradually move from one to the other visually. I really
think her neck/head is getting stronger...it's still small amounts of
time, but definitely more than before. The medication they decreased
yesterday was decreased again today...we'll see if there appears to be
a difference tomorrow! We took her to one of the younger patient's
birthday parties, which seemed to be too stimulating for her, so we
left after just a few minutes. Again, I will update on Houston as soon
as we have a definite answer...I feel like we had a better day and
certainly up till now a better few evenings as well!
DocJana - 2/23/2003 at
07:40 AM
"Do not be overcome with evil, but overcome evil
with good." Romans 12:21
I can get into the forum tonight because I am home! My mom is spending
the night at the hospital with Aubrey so that we can spend some time
together away from the hospital.
I hope everyone went to the guest book again last night since that is
where I had to update. Today she slept quite a bit, had several
visitors, and had some agitation tonight. One of her friends came up
and she seemed to really be listening to her, and eventually started
vocalizing "with" her. Tonight, her nurse, Regina, told her to bend
her knee, and she did...then suddenly sat almost all the way up in
bed! It only lasted a few seconds, but it is the first time she has
actually moved her upper body anywhere near that much. Of course....it
was while I was gone!!!!
I'm just happy she did it. Who knows what she'll do tomorrow???
DocJana - 2/24/2003 at
06:39 AM
"So is my word that goes out from my mouth: It
will not return to me empty, but will accomplish what I desire and
achieve the purpose for which I sent it." Isaiah 55:11
Legacy Center sent this verse last night, and I thought it was great!
Aubrey really has her days and nights mixed up...she is staying up
until 2-3am, then sleeping ALOT during the day. They gave an increase
of some medication tonight a few hours earlier, and so far she is
still wide awake! She seems to be moving her head more, more facial
expressions, and, of course, the occasional sudden body movement...but
the movements and facial expressions aren't really "normal"...they
just seem "off". There is that phase, as I've said, where brain injury
patients go through agitated, erratic behavior, so again, maybe this
is what Aubrey is starting. She is definitely getting stronger, and
for that we are very thankful.
We love all of you, and are so very grateful for your continued
prayers.
DocJana - 2/25/2003 at
04:02 AM
"Therefore will the Lord wait, that he may be
gracious unto you...blessed are all they that wait for him." Isaiah
30:18Text Blue
Today was a WONDERFUL day! It started this morning while Brady and I
were at home and my mom was with Aubrey. She stayed up until 3:45 a.m.
again, but did wake up for morning therapy. The therapists came in and
sat Aubrey up and she started vocalizing some. They said, "Aubrey, are
you going to talk to us today?", and asked her to say "Mama"...which
she immediately did!!! They asked her 2 more times and she responded
each time. Then Krista asked her a question and told her to answer yes
or no, and she said "uh huh". She also turned her head to the
individual therapists when told to. They were so excited they called
us...Brady answered the phone, they told him what had happened, he
talked to her and she did some vocalizing, then he handed the phone to
me. I still didn't know what had happened, and I said, "Aubrey, it's
mom." And she said, "Mommm.." It was the most wonderful sound in the
world. This afternoon she didn't talk, but she attempted to, she found
our eyes very easily, she turned her head toward me twice when told
and moved her eyes to me several times when I spoke. Anoxic injuries
tend to have a very slow recovery curve, and things do move extremely
slow at times. This was a great step, and we are so thankful! ALSO! We
got word today that we are approved to go to TIRR in Houston! We
should get official confirmation tomorrow and find out the schedule,
which I assume will be pretty fast. Anyway, praise God for an awesome
day and the promise of future progress!
DocJana - 2/26/2003 at
05:49 AM
"And the prayer offered in faith will make the
sick person well; the Lord will lift him up." James 5:15
For the first time in days, Aubrey slept well, except when she needed
to be turned or changed. She is becoming VERY aware of many hygiene
functions....and much more sensitive to tactile stimuli as well. Today
she slept until noon, was awake an hour, then back asleep. Her first
therapy was early afternoon...mostly stretching...then sitting in her
chair. The speech therapist worked with her next. Usually Dimitra is
working for 2-3 swallows during her session...today she quit counting
at about 15! She was doing so well, Dimitra put some applesauce on a
Qtip (little "blobs") and put it in Aubrey's mouth. She worked it with
her tongue and swallowed it well...also, a small amount was dripped on
Aub's bottom lip and I told her to get it with her tongue and she did!
Later, Kristen (OT) had Aubrey leaned very far forward in her chair
with her head resting on Kristen's shoulder...Aubrey pulled up to
sitting twice from this position! Several times today Aubrey held her
head up with no help for several minutes...and tonight she leaned over
from a chair and put her arm on the bed and leaned on it and supported
herself. Very little vocalization today, EXCEPT! she was lying down
after therapy and was making some little "quacking" sounds through her
speaking valve...the therapists said, "Aubrey, we don't want to hear
you quack, we want to hear you talk. Say "mom"...and she did again! I
don't put EVERY thing she does online because some is a little more
personal...but some other areas are coming along as well. We should
find out tomorrow about our departure date for Houston...I'll post as
soon as I know!
DocJana - 2/28/2003 at
06:09 AM
"I consider that our present sufferings are not
worth comparing with the glory that will be revealed in us." Romans
9:18
The last two days have been a little more muted....she has shown
improvement still over last week, but not dramatic like Monday and
Tuesday. I believe that this may be due to the fact that one of her
medications which is sedating was increased yesterday. She still is
swallowing well, helping some with standing transfers to her chair,
vocalizing more, etc...just trying to sleep through most everything
and today her little legs were like jello! We are preparing for her
move, and would like to ask that anyone planning a visit call first to
make sure she isn't resting...we don't want her exhausted when she
goes...also, if anyone has any kind of cold, cough, etc, please
consider a phone call rather than a visit! Thank you all for your love
and consideration...your support and prayers have meant the world to
us. We will continue her updates while in Houston, so keep in touch
with us!
DocJana - 3/1/2003 at
09:22 PM
"God is within her, she will not fall; God will
help her at break of day." Psalm 46:5
Friday was not too exciting for Aubrey...she was having a little
trouble with reflux (spitting up!) and had to have an upper GI series
done (barium dye and radiographs taken)...it was normal, so maybe she
was just having a bad day with her feedings. She still seemed more
sedated and only had therapy once. Last night, her nurses and
assistants gave her a shower, massage, and new nightgown...she really
gets pampered where we are by all who take care of her...we are going
to miss these wonderful, loving caregivers so much!
Today she had therapy only once since it is Saturday, and she did
wonderful...more like Monday and Tuesday. She was very vocal...again
my mom was there and I was at home with Faith and Chance (trying to
prepare for the move). I called and talked to her on the phone and she
again seemed to say "Mom" twice, listened to me talk, got BIG eyes
when I talked about speaking with Mr. Farris this morning and that he
said he'd been trying to talk her into joining the academic team
before she got sick...she really was listening and vocalizing on the
other end. When I got off, she got upset and vocalized more, so they
got me back on the phone and I talked to her some more. When they were
doing her standing transfer from the chair to the bed, she was, of
course, leaning on the therapist with her upper body, but locking her
knees to help stand. Serena told her to pick up her foot and put it
back down (first steps to learning to walk again) and she did! I heard
Serena screaming from the phone....she was so excited. Then when she
sat Aubrey down on the bed she asked Aub if she wanted to get back up
and Aubrey immediately leaned forward to her. So, it was a good,
responsive day! I will try to update daily when we leave, but don't
know the computer situation yet, so be patient with me! Pray for a
safe trip and great days ahead!
DocJana - 3/3/2003 at
06:30 AM
"...for the eyes of the Lord are on the
righteous, and his ears are attentive to their prayer." 1 Peter 3:12
Well, I thought I would be updating tomorrow night from Houston...we
were supposed to leave early in the morning...Brady on the air
ambulance with Aubrey and me on Southwest (thank you, Dana, for being
so kind and providing my ticket). The ambulance called today to say
they were delayed in New York, but can take Aubrey tomorrow afternoon
or early Tuesday morning, whichever TIRR indicates would be better for
them...we won't know until in the morning. I'll then change my ticket
and we'll regroup. Aubrey was awake most of the day and had several
dear friends visit with her throughout the afternoon. Our immediate
family spent the evening with her which was very important for Chance
and Faith...they've never gone very long without seeing their sister.
Brady and I cannot both stay in Houston because of work and the other
children, so we are going to take turns with each staying for several
weeks at a time. Please pray specifically for our family during the
time of separation, that our business will thrive, and most
importantly, of course, that Aubrey will continue to heal. Thank you,
friends.
DocJana - 3/4/2003 at
06:47 AM
"Have faith in God." Mark 11:22
This will be pretty short...I've written a couple of long posts and
keep getting bumped off and losing them!
Isn't it strange how some really great days are also incredibly sad?
We are so thankful for Aubrey to have the opportunity to go to TIRR...and
yet are so sad to be leaving the loving, nurturing, caring hands at
CMC...we treasure each of you and thank you.
Aubrey and Brady got to TIRR about 8 pm, and got settled in. Aubrey
did well on the flight...her oxygen saturation was good, although her
heartrate did get a little elevated at times (I think Brady's did,
too! Those air ambulances are not very big!). Brady seems excited to
be there, and happy with her care this evening. I get up in about 3
1/2 hours to leave on an early morning flight and should be at the
hospital before 9am. I will only stay a few days. I have two other
wonderful children that want their mom home for awhile, so Brady is
taking the first "Houston shift". It is very hard for me not to be
with Aubrey...but I am happy knowing she is with her dad who takes
such loving care of her. I'm not sure on the computer status for the
next few days, but if I can update I will. Well, I'd better get in
bed...tomorrow is almost here!
baldies - 3/5/2003 at
04:05 AM
UPDATE FROM HOUSTON, JANA and BRADY: Jana does not have access to a
computer.
Aubrey is spending today and tomorrow being evaluated by different
therapists and the doctor. On Thursday a.m., she will be given an
injection of medication into her spinal canal to see if this helps
with her spasticity. If it does, we are probably looking at having a
pump surgically placed to deliver constant amounts of medication to
her spinal canal.
Most of this week will be used to develop a therapy plan.
FROM PRYOR:
Jana and Brady were blessed temporarily with a spacious private room,
sleeping double fold couch with a large bathroom. They were expecting
a semi-private room. They do not know how long they will have this
room. I feel that it is very important at the present time as they can
be together on this new road. Jana does not have to stay at the
McDonald house this trip.
Please pray for positive results for Aubrey's tests and evaluations
for her to go forward; and for Brady, Jana, Chance and Faith
travelling this new road of the family being separated.
Your support and prayers are uplifting and healing. I thank all of the
marvelous people, relatives and friends that have done so much for us.
Grandma Carolyn (Jana's Mother)
DocJana - 3/8/2003 at
06:42 AM
"The Lord hath done great things for us; whereof
we are glad." Psalm 126:3
I am back home with Chance and Faith, but a large part of me is still
in Houston...it will be some time before we are complete. I miss Brady
and Aubrey!
I want to thank the people at CMC again...I really feel we have been
where we were supposed to be at the times we were supposed to be
there. I feel like CMC was the perfect place to prepare Aubrey for
TIRR...and we are so grateful to them.
As posted earlier, Brady and Aubrey arrived Monday night. I came in
early Tuesday morning for her first full day. I can honestly say that
Tuesday, Wednesday, and the first half of Thursday were very hard on
Aubrey. Her storming, perspiring, jumping/tremoring, "panic"
eyes...all were at their worst. I think a combination of the move, new
voices and faces, coming off most of her regular medication....it all
took its toll. They have been doing a lot of measurements,
videotaping...she has new handsplints and her leg splints are in the
works. The therapists feel she does not have true spasticity...that it
is more dystonia. Hard to explain the difference, but the pump we are
referring to helps both. She stayed wide awake Mon, Tues, and Wed
night...then slept from 8pm last night until this morning. How nice
for a peaceful night's rest after so much agitation. Yesterday morning
they started Aubrey on some medication for Parkinson's Disease, not
because she has it but because the tremors/jerking she does are
related to the same area of the brain. She started yesterday morning
and by yesterday afternoon, her tremors/jerking were gone. She was
able to relax, watch TV, and not have that "deer in the headlights"
look. We have about 15 different facial stretches we are
learning/doing three times daily...her facial muscles haven't really
been used for 3 1/2 months, and we trying to get them in shape as well
as the rest of her body. It should also help the slight amount of
asymmetry she has in her face. (Sorry this is so random...I'm just
typing as I think of it)
The neurosurgeon scheduled to perform her baclofen pump trial had to
cancel the night before...it usually takes quite a while...weeks,
even...to get the trial done, so we were very fortunate to be having
it done 2 days after arrival. Her doctor is in the process of
rescheduling it...hopefully, it will be soon. She is also scheduled
for an EEG and MRI on Monday.
I think she may have slept so well last night partially because of her
day. Here is her schedule on a normal day:
8:00-Alma, her aid and new grandma, gets her up, dresses her, fixes
her hair, brushes her teeth, feeds her...and gets her in her new
wheelchair by 8:55am...
9-9:30-Speech
10:00-Music therapy (up to 3 times wkly)
11:00-Noon-Occupational therapy
1:30-Speech
2:00-3:00-Physical Therapy
3:30pm-Therapeutic Rec
In addition and including some of these times, Aubrey has 3 sessions 2
hours each of sitting in her wheelchair. So she has to be pooped! The
medication for Parkinson's is also a neurostimulant, which may help
keep her awake (although, Demetra, she has slept through some speech!)
I think today she is just getting back to where she kind of was before
we left CMC. She seems to click well with her therapists, and has done
some responding. Her therapeutic rec therapist has got her to raise
her eyebrow for a "yes" several times, and she really watches her and
tries to do what she says. I asked her yesterday if this therapist
reminded her of Coach Karie, her cheer coach (because she does to
me--firm, pushing but in an uplifting voice) and she immediately
started vocalizing...the first and only time yesterday. The therapist
thinks she said "yah", but I don't know! Today, her speech therapist
would say"Aubrey, I'm going to say "1" and you say "2" or "I'm going
to say "a" and you say what comes next....several times, Aubrey would
respond with a vocalization...not the number or word, but vocalizing
in the appropriate place...who knows? Maybe she WAS trying to give the
correct answer. She also vocalized in the shower.
Brady had a sweet time with Aubrey this evening. He took her out to
the garden for an hour and a half, and he said she softly vocalized a
lot while out there. He said it was obvious she was enjoying herself.
While there, another father came over with his almost 19 year old son
and talked to Brady. His son was in a car wreck 15 months ago and had
a traumatic brain injury AND an hypoxic/anoxic injury. He is still in
a wheelchair and cannot speak, but he CAN communicate. (He can
vocalize) His dad heard Aubrey vocalize and said, "Did I just hear her
vocalize? That's great! My son didn't vocalize for 7 months". That
made Brady feel good. He and Aubrey are going to go to this young
man's birthday party on Sunday in the hospital. There are a lot of
young people there, but not on Aub's floor...she is on the brain
injury floor instead of the pediatric floor with most of the
teenagers. We really wanted her as close to Dr. Ivanhoe as
possible...I have met some mothers in the cafeteria, however.
Two things happened in the last 24 hours that were affirming to us.
The first...while in line at the airport, feeling a little lost, I
overhead an older man, a woman, and her twenty-something son. The
older man was talking about TMC (Texas Medical Center of which TIRR is
a part), a hospital there had implanted embryonic tissue into a man's
brain that had Parkinson's...with the hope that it would
treat/cure/stabilize the disease. This man in line was going to be
Number 2 for the procedure! I thought this interesting considering the
medication Aubrey had been started on. Then I heard the son speak, and
realized that he may have had a brain injury because of his speech.
When he walked away, I asked his mom, and she said yes, that he'd had
a brain injury and had spent a month in rehab at TIRR....with Dr.
Ivanhoe as his doctor! She sang the doctor's praises, and told me not
to give up....miracles happen every day at TIRR. I found it
"coincidental" that these three people happened to have met...right in
front of me...and began talking about this, especially since it wasn't
the line the Parkinson's man was supposed to be in!
Second....when Brady was in the garden tonight, he was sitting on a
bench. He looked down and started getting goosebumps. When Aubrey was
about 4-5 years old, she drew a picture of a bench with scenery....it
has been taped to Brady's office wall above his desk for 12 years. He
said this bench was extremely similar to the one she drew...he started
thinking about the picture, stood up, and faced the bench...and his
goosebumps got larger...the background was almost identical to the one
she drew as a child...and that Brady has looked at every day for all
these years. He felt very much at peace.
Pray for another restful night for Aubrey, and more wakefulness
tomorrow. Thank you for your continued prayers.
DocJana - 3/9/2003 at
06:07 AM
"Who healeth all thy diseases." Psalm 103:3
Since it is Saturday, Aubrey only had two therapy sessions. This
morning she had physical therapy...they're using one of those big
exercise balls quite a bit and having her lay over backwards on it.
(Of course, they place her on it) She really vocalizes on it. This
afternoon in therapeutic rec, she stuck her tongue out (very slightly
but obviously) when told, and really TRIED to do what she was told.
Her body just has a hard time actually doing things, even when you can
see her trying! She spent 4-5 hours in her wheelchair as well. She
rested well today, and when was awake, seemed peaceful. The father of
the young man who is having the birthday party tomorrow came down and
visited with Brady again...it's too bad they're leaving Thursday, I
think they'd be good for each other. Tomorrow should be a day of rest
except for the party...have a great day!
DocJana - 3/10/2003 at
03:14 AM
"Underneath are the everlasting arms."
Deuteronomy 33:27
Brady said Aubrey was very peaceful all day, except for some early
MILD storming this morning before her medication. They went to the
garden again with Braxton and Charles (the father and son Brady has
become friends with) and spent quite a bit of time in her chair. She
vocalized quite a bit today....just making little sounds that
hopefully someday will become words. Her great aunt visited yesterday
and today....it's nice to have family to visit with. There has been
some confusion, but I believe Aubrey will have her baclofen trial
tomorrow....or her MRI! Somethingis happening tomorrow! I think
she will have to have sedation with either procedure, so she probably
won't do therapy tomorrow. Please pray that whatever is done, the
results are favorable for Aubrey. I'll let you know as soon as I
know...probably tomorrow night!
DocJana - 3/11/2003 at
04:48 AM
"They go from strength to strength." Psalm 84:7
That is, they grow stronger and stronger...as always, this is our
prayer for Aubrey.
Because Aubrey was not able to have her medication today (because of
the pump trial) she has been storming and tremoring alot. Some of that
may not have been alleviated by the medication, but it does seem to
have been helping.
The baclofen pump trial went well (the procedure where they inject
medication into her cerebral spinal fluid). The results weren't
dramatic, but it definitely helped with her dystonia and indicated
that a baclofen pump would be warranted. They will surgically implant
this pump either the end of this week or early next week. Please pray
for Aubrey to tolerate the anesthesia well and for the surgery to be
perfect with awesome results....also pray for this mom as I may not be
able to be there for the surgery...this would be a first with any of
my children. Aubrey had a one-on-one nurse throughout the day and
because of the trial did not have therapy. It's hard to say how she's
really doing because of so much assessing, medication changes, and, of
course, the testing. Please continue praying fervently for Aubrey's
healing progress, and for Brady...he's being very strong for me, but I
know he's lonely for all of his family.
DocJana - 3/11/2003 at
09:57 PM
"So do not throw away your confidence; it will
be richly rewarded. You need to persevere so that when you have done
the will of God, you will receive what he has promised." Hebrews
10:35-36
Aubrey had a much better day today thus far. I am actually updating
before dark! She awoke this morning more alert than in past days, and
vocalized throughout the day. At one point she held her head up on her
own for 10 minutes, which is probably a record. In occupational
therapy, she was on her hands and knees leaning over a huge ball,
holding her head up well and vocalizing during it. She started
vocalizing and looking at Alma when Alma was talking to her while she
worked with her. Brady says she listened and moved her mouth while I
talked to her on the phone, and tried to make some sounds. She was
pretty sedate after OT when speech and music therapy came, and she is
not swallowing real well right now. In PT, she had her second fitting
for her casts for her feet, so they really didn't do therapy. She has
held her head up well all day, but was pretty pooped after a more
alert morning. Her tremors are not gone, but they were much better
today. Brady felt like today was her best day since arriving at TIRR...we're
relishing it knowing that when she gets her pump put in (still don't
know the date) she will be down for several days. But...if being down
now means better days ahead, let's get it over with! My days are
directly related to Aubrey's per Brady, so I am having a better day as
well!
DocJana - 3/13/2003 at
05:10 AM
"I leave you peace, my peace I give you. I do
not give it to you as the world does. So don't let your hearts be
troubled or afraid." John 14:27
Well, today started off shaky. Aubrey was up until 5:30 a.m. jerking
and twitching and perspiring all night....Brady said it was the worst
she's ever been. The one remaining medication she had been on is still
being decreased, and Aub had a terrible night. Today, she was calm
with no tremors at all...they also started another new medication and
tonight she was awake and alert with no tremors...and she fell asleep
about 9pm and at this time is still resting peacefully. We will find
out tomorrow if her baclofen pump will be implanted this Friday or
next week...her MRI/EEG is scheduled for next Tuesday which could
change depending on her surgery date. Her casts were finished for her
feet, and the therapists were pleased with her range of motion and
felt like her heel cords were in pretty good shape. These casts should
help her from getting misaligned ankles, turned in feet, etc. Her hand
casts are working well and she seems comfortable in them. Most of her
therapy today revolved around her casting except for speech. I am
thankful that she had a peaceful day, and what appears to be the
beginning of a restful night.
DocJana - 3/14/2003 at
07:09 AM
"All your children will be taught by the Lord,
and they will have much peace." Isaiah 54:13
I have really felt led to use the scriptures posted by Wade and Julie
this week, as they have touched me where I really needed it....the
issue of peace.
Aubrey cleared her throat twice yesterday...I know this seems so
insignificant, but it is something new she hasn't done before. Also, a
neurooptometrist examined her and we had a great report that her eyes
showed no abnormalities as far as vision...now that does not say how
her visual cortex processes the "picture" once it reaches her brain.
Today she spent time on the "ball" and again vocalized a lot....then
this afternoon the therapists got her standing holding on to a grocery
cart. Understand...one person held her knees, another her trunk, and
Brady her head...BUT...the therapist holding her knees felt like
Aubrey was helping her, whether voluntary or involuntary. It is just
another way to stand versus the tilt table. She also experienced some
new chair or stand...I didn't quite understand Brady! We were told
around noon that her surgery would be tomorrow....then at 5:30 the
anesthesiologist came in and said the neurosurgeon had to reschedule
for March 27...so we're on hold for now.
The new medication Aubrey started on yesterday seems to working well.
She...so far!...is sleeping for the second night in a row and has
again had no jerking or twitching today. I am so thankful for that! It
is hard to watch your child go through so much, with such a look of
panic on her face...knowing you can't seem to help her.
I hope to be kissing her by Sunday...my mom is going down tomorrow to
be with her while Brady comes back up here to be here for Chance's
tournament and then drive us back down to Houston for spring break. I
can't wait!!!!!
DocJana - 3/19/2003 at
03:53 AM
"For I know the plans I have for you," declareth
the Lord, "plans to prosper you and not to harm you, plans to give you
hope and a future." Jeremiah 29:11
It's been a long while since I updated, simply because we were
traveling two days, then I have not had access to a computer until
tonight.
We arrived Sunday night (my mom has been with Aubrey since Friday) and
we immediately came to see Aubrey. It had been nine days since I had
seen her, and Chance and I both immediately thought she looked
"better" than 2 weeks before. Not anything specific, but she was
sitting in her chair and just seemed a little brighter...still has a
somewhat blank stare, but just a little different. It's hard to
explain....Brady couldn't see it I think because he has been with her,
but now I know what people meant at CMC when they hadn't seen her for
a while....I didn't always see it since I was with her all the time.
ANYWAY! I was so happy to see her...as bad as this situation is and as
severe as her injury, I am so much more emotionally "stable" when I am
with her!
Monday morning an ambulance service picked her (and me) up at 10am to
go to another hospital for general anesthesia and an MRI...it was
supposed to take a total of 2 hours, but we did not get back to TIRR
until 5:40pm...a very long, hard day for Aubrey. She stormed hard
while we were at the other hospital...it's hard for me when I can't
help her! Last night she slept well, and was still pretty sleepy this
am...
....when she went to occupational therapy. They know how to wake her
up, though...put her on a ball! She stretched a lot, vocalized a lot
in therapy, then stood three times with help. They held her knees and
shoulders, but she held her head up by herself the whole time. She
looked at Christy, her OT, more than once when Christy started
speaking to her...and I think Aubrey may have been giving her the evil
eye! When Aubrey is up like that, I can see the future so much better
....it's when she's in her bed a lot that it's harder to envision.
At 1pm, another ambulance came and took us, again, to this other
hospital where she stayed 5 1/2 hours for an EEG. She only stormed a
little while there, but has been storming quite a bit tonight...not
severe, but enough to not let her rest. She had a very nice EEG
technician, Bruce, who took a lot of care and time with her. Once she
stopped storming, she slept through the whole procedure.
My mom is staying with Aubrey at night this week through Wednesday so
that I can stay with Brady and the kids at the Ronald McDonald house.
I have to say that this place is absolutely wonderful...it has 50
rooms, so it is quite large. Everything they have to accomodate the
families is incredible and so helpful. We are thankful to be here this
week and be so close to Aubrey. Tomorrow I will go to TIRR early and
be with Aubrey for most of her therapy, but in the late afternoon, I'm
going with the family to the Museum of Natural Sciences which is
supposed to be awesome...Faith will love it. Thursday Brady takes the
kids to Dallas to meet friends and go to Six Flaggs....I will stay
here with Aubrey until Saturday...and then return home. Mom will be
here until Monday, when Brady returns to Houston! Aubrey's baclofen
pump surgery has been delayed until March 27...I may have already told
you...I forget! Anyway, I can't promise much in the way of updates
because there are only two computers at the House, and they are
usually taken. You have to get on before 9pm, so I lucked out tonight!
Please pray for Aubrey's MRI and EEG to come back IMPROVED over her
last ones (which I guess is not how it usually goes!), or for that
matter, pray for them to be normal!!! Also, pray for a good day of
therapy after missing most of it since last Friday...love to all.
DocJana - 3/23/2003 at
06:57 AM
We are back home tonight...I am very tired and will update
tomorrow. Today is exactly 4 months since Aubrey became ill...it's a
hard day. My mom is with her until Monday, when Brady will return. I
will write more tomorrow....thank you for lifting us up.
DocJana - 3/24/2003 at
05:11 AM
"If I can?" said Jesus. "Everything is possible
for him who believes." Mark 9:23
As you can probably tell from the reports, the therapists are really
working alot on Aubrey's spasticity...she's wearing a cast for several
hours a day on her left arm, and much of her therapy is dealing with
keeping her contractures from getting worse. They will know more about
their future plans once the pump is in and they have had a little time
to work on dosages. It doesn't generally do a lot for the arms,
although, occasionally, they get lucky. Once we see the results with
the arms, a decision can be made as far as botox injections into the
isolated arm muscles. Because of the dystonic posturing (pulling at
her head, neck, stretching her legs) she seems to be having a more
difficult time focusing. BUT, today she had a very good day with her
Grandma Carolyn. She watched part of 3 different movies (which she
hasn't done since she got to TIRR) and she obviously moved her eyes
several times looking at a bulletin board Grandma made for her with
her pictures on it. Mom pointed to several different pictures, and
Aubrey moved her eyes to each picture she pointed to...very obviously
moved her eyes. That's more than she has been doing. She didn't storm
today, and really seemed very relaxed...and that is very comforting to
us!
Brady leaves very early in the morning to get back hopefully by the
time my mom leaves to catch her plane back to Oklahoma. We still are
unsure of how long he will be there until I go down. It was wonderful
to be with Aubrey this past week....very comforting to be able to
touch her and take care of her.
Please continue to pray for God's peace for us...and to realize great
things are still to come!
DocJana - 3/25/2003 at
04:15 AM
"Be strong in the Lord, and in the power of His
might." Ephesians 6:10
I don't have a lengthy update tonight. My mom was with Aubrey for
therapy, and left for the airport shortly before Brady arrived by car
with his Dad.
Aubrey had her right arm casted today, instead of her left. They've
started her on some pain medication because the casts as well as the
spasticity may be causing her pain. In PT, she was in the "big" gym
(it's really big!) and was put in something that takes her from
sitting to standing...but it's not a tilt table. I haven't seen it, so
it's hard to explain. The PT seemed to think she really did well. In
speech, she didn't vocalize, but mom said you could tell she was
trying very hard. The therapist told her she didn't have to make any
sounds, but to let her know she was trying. Mom said whenever the
therapist would ask her something, she would look at her and move her
lips but no words.
Please continue to pray for Aubrey's upcoming surgery this Thursday at
St. Luke's. She will spend one or two nights there and then come back
to TIRR.
I would like to take this opportunity to thank everyone who has been
so supportive, including Gymnastics City, the Claremore cheerleaders,
the fabulous meals being prepared and provided by our church family. I
know there are many who have donated funds in Aubrey's name...a
special thanks to those who have contributed to the jars placed around
Claremore, the donations sent to the clinic, money pressed in our
hands at the grocery store, church, etc., the anonymous donor from
First Baptist, the highschool history class, the wrestling fundraiser,
Roosa, Jr. Oceleta, three incredible men and their families (you know
who you are), and a special and sentimental thank you to the Claremore
Girls Softball Association for their generous gift. I just wanted
everyone to know we are so very thankful and grateful...above all, we
know that anyone donating is also praying, which means more than
anything. Thank you all...may you be blessed.
DocJana - 3/26/2003 at
04:50 AM
"Father, I thank you that you have heard me."
John 11:13
Well, today was a sleepy day for Aubrey. They started her on that new
pain medication last night, so that may have been a factor. She got
her left arm casted again, as well as one of her feet and ankles. A
wonderful ENT evaluated her, and they are going to downsize her trach
after the surgery (which has been moved to Friday.) She probably
doesn't really need her trach, but until she is swallowing
consistantly, it helps protect her airway.
We haven't heard the results of her EEG, but the MRI was as MEDICALLY
expected...her cerebrum has atrophied(shrunk) some...we don't know to
what degree. That is not, of course, what we have been praying for.
She has rested well this evening thus far, and hopefully will have a
good night. I'd like to see her well rested before the surgery.
Continue praying for peace for us as a family and as parents...I don't
necessarily mean acceptance, however, as we're still believing in a
better day.
DocJana - 3/27/2003 at
03:35 AM
"Delight yourself in the Lord, and he will give
you the desires of your heart." Psalm 37:4
Brady felt like Aubrey had a good day. Her OT could feel Aubrey
attempting to follow her command during therapy...it's just so hard to
do something when your body is fighting itself so much. Her music
therapist said Aubrey turned and looked her way when she walked in the
room today...Brady was not in the room yet, so he couldn't give me his
interpretation. The therapists feel like once they have the pump in
and regulated, that she won't be fighting against herself so much and
can "go with the flow" when she understands the command...it may also
help the posturing some. It WON'T make her any more aware...I'm
praying that time and the Lord will take care of that.
I want to thank the lovely "Lunch Ladies" of Claremore High School
cafeteria for the nice gift and card you sent! I'm going to use the
money to get Aubrey some summer jammies!
DocJana - 3/28/2003 at
04:12 AM
"Pray in the Spirit on all occasions with all
kinds of prayers and requests..." Ephesians 6:18
Aubrey had another pretty good day...not responsive but continuing to
hold her head up for very long periods of time. Please remember her
early in the morning. At 6am, the ambulance will come and transport
her to St. Luke's hospital in the Texas Medical Center, and her
surgery should be around 8 or 8:30am. Please pray for her
anesthesiologist, her neurosurgeon, the team in surgery, Brady and
I...anyone involved in the procedure including the ambulance
transport.
I'm sure most of you realize to some degree how hard it is that I am
not there...we really felt like one of us needed to stay with Chance
and Faith...please just pray for a successful and USEFUL surgery with
wonderful and surprising results.
DocJana - 3/29/2003 at
07:53 AM
"To everything there is a season, a time for
every purpose under heaven." Ecclesiastes 3:1
Aubrey's transport went well...I spoke with Brady while they were in
the ambulance a little after 6am. At 8am, Brady put the phone up to
Aubrey's ear and I spoke with her and tried to encourage her...Brady
thought she was listening somewhat. She had had a very bad night...one
of her worst, so I know she was exhausted. The surgery took two hours,
and went very well according to the doctors. The first time Brady met
this surgeon/anesthesiologist, he told Brady he was going to pray for
Aubrey. Today, after surgery, he hugged Brady. It is refreshing and
comforting to feel that much caring from those in the medical field.
There are times that Aubrey gets an intense, terror attack/panic look
on her face...I think I've written about it before. We've never been
able to comfort her or get the look to go away in the past. After she
awoke today, she got that look...which can last hours at times. Brady
said he went to Aubrey, stroked her face, and spoke to her...and
within 15 seconds the look was gone. Later, she started appearing to
get a little frightened, he spoke to her, and again, she calmed down.
We're not used to this, and pray it is the pump. With a small amount
of patients, the pump does help more than the legs...it can affect the
arms, which Aubrey really needs help with, and sometimes even allow
more facial expression. Aubrey's face either shows pain or no
expression at all...I would love to see her do more. Her blood
pressure was 166/95 this afternoon, but she wasn't storming...they
started her on morphine assuming she was in pain and had no way to
communicate it. The hospital is very, very nice and Brady likes her
nurses...they'll only be there for 2 days. She was resting well
tonight, and Brady felt so much calmer knowing she was resting (of
course, the demerol and morphine didn't hurt anything!).
Please pray for supernatural results from this surgery...and comfort
for Aubrey. Thank you.
