Journal -- Twelfth Month
woke up only once during the night. At 12:30am, she was hungry.
Mom changed her clothes as she was sweaty again... Claire ate
2oz of shake but didn't care to go back to sleep... she wanted
to look around and check the room out. Mom put her on her chest
and patted her back, but her eyes were still wide open. So mom
layed with Claire on her chest and eventually they both fell
asleep, then mom woke and put her in her bassinet, around 2am.
Mom put her bassinet against the oxygen machine again. Mom is
letting her sleep in... her little body has lots of food to
process from yesterday! Mom can't wait to see how much she eats
today... she even stocked the pantry!
Claire is looking forward to seeing Physical Therapy and Music
Therapy today. Mom has much work that she brought home to do.
Big big big day tomorrow!! :o)
The family had friends over for pizza as a pre-celebration.
Claire enjoyed herself as she got two new party dresses! Mom
will wash them tomorrow so she can wear one for her party tonight,
and the other for her 'bash' on Saturday.
Claire went to bed at 9:30pm after two bottles of shake.
didn't wake up during the night... she slept strainght through
until 6am. Mom got up and gave her 5oz of shake after her meds.
Then another 5oz for the road, and dad took her to daycare.
At daycare, she finished off the previous 5oz (for the road),
had another 4oz for lunch (3 of formula and one of pedialyte)
and then another 5oz of formula. At 4pm, she had another 5oz
bottle, but ended up leaving about 3oz of it, as mom prepared
her a shake when she got home. yum!
In the evening, she drank about 8oz of shake, had a nice bath
and another oz before drifting off to sleep. It seemed you couldn't
feed her enough... or get the bottle for her quick enough. She
was a hungry little baby all night. She ate nearly 30 oz of
food during the day... including cereal, prunes and bananas
in her shake.
She knows Grandma and Claire J's mom are coming to see her from
far away for her birthday bash... and she wants to be 'filled
out' for them.
woke up only once during the night. At 1am, she was hungry.
Mom changed her clothes as she was all sweaty, changed her diaper...
Claire ate 2oz of shake then fell back asleep. Mom put her bassinet
against the oxygen machine so she could feel the slight vibration,
and Claire didn't wake back up until morning. Mom woke her at
7am for meds and daycare. Dad had only gotten to sleep a few
hours before and was exhausted. But he is determined to get
the family organized! Go Dad! Claire went to daycare today,
the first time in almost 2 weeks. She had a great day. Came
home and had a bath and lots of shake before falling to sleep
on mom's lap during Claire's dinner.
Claire went to bed at 8:30pm.
slept through the night until 5am. Mom gave her a couple oz
of shake and her meds so they could sleep in. Claire went right
back to sleep until mom woke her at 9am so they could start
getting ready for church. Claire had her hearing aid in for
church and heard some nice new sounds, like the organ and the
After church, they went home and no one took naps. It was much
too gorgeous of a day (high was probably 80 degrees), so everyone
went out to play in the yard. Claire's sister was chasing butterflies,
lizards and frogs, while her brother played with a friend who
lives next door. Eventually, Claire's sister went over there
for a while and Claire hung out in her playpen... napping mostly,
with small breaks to eat in between naps. Mom had a mosquito
netting that fit snugly on the playpen, and the fan on above
Claire so she could stay cool. There was a nice warm breeze
that came through the porch too, so she didn't sweat.
In the evening, Claire's uncle came over with her aunt and cousins.
The came for dinner. It was fun having them as everyone hung
out on the porch and enjoyed the weather for a while, then inside
for dinner and dessert. When they left, Claire got a bath and
off to bed with everyone, except dad, he had some 'serious'
filing to do...he was up until the wee hours of the morning
working on it.
Claire went to bed around 9pm.
was up at 12:30am, hungry. Mom fed her... and she was still
fussy... around 3am, and after about 5oz of shake, they both
got some rest and at 5am, she was up again... hungry.
Mom asked dad to get her, and he did... he fed her more bananas
she finally fell asleep.
Mom woke her at 9:30am for meds and breakfast. Claire likes
to be up all night and sleep in... if mom can sleep in too
(like on the weekends) it works out pretty well, except for
the 8am meds... that doesn't always fit with mom and Claire's
idea of sleeping in. Claire didn't drink too well, or maybe
just very slowly, she kind of 'nibbled' all day, but her diapers
were very full!
Mom layed with Claire's big sister for a while until she fell
asleep, then mom and Claire took naps while dad and Claire's
brother watched a movie.
Later, Claire's brother had a basketball game, the last one
of the season, and the whole family went. The girls showed
up after their naps, and Claire without her hearing aid...
the noise is just too loud, and mom was rushing out the door
and forgot it... guess that will happen a few times.
After the game, they enjoyed visiting with friends at a restaurant
where they had dinner. Then home to watch some tv and relax.
Tv watching included the video of Claire's sister singing
to her (mom loves the part where she sings ABC's then sings
them backwards, even her brother was impressed!), and Claire's
brother's basketball game.
Claire is finishing off about 7oz of shake, then going to
bed... hopefully for the entire night. :o)
New Hearing Aid!!
put Claire back to bed at 2am, and was till up until 3am getting
some work done. Mom got up shortly after dad went to bed,
as Claire was awakened. Mom put a pacifier in her mouth as
she went to get her bottle... when she returned, Claire was
asleep, so mom went back to bed.
Mom's alarm went off at 5am to get up and start Claire's sleep
deprivation for her hearing appt. Mom hit snooze a few times
and finally got out of bed around 6:30am... She got Claire
up... covered in sweat again. Claire got a bath, then a nice
shake... she had about 10oz of shake before her appt at 8:30am.
She had her ears cleaned out... left and right. Then she went
to sleep, rather quickly, and was ready for her hearing test.
She slept really well through the whole thing... woke herself
up a few times, probably from the snoring... maybe from a
mild sleep apnea, but quickly went back to sleep.
When the test was completed, she was fitted for the hearing
aid. The aid was adjusted according to the results from her
test (an ABR test), and then mom took her to the 'booth' where
they sat down in a chair, Claire was still half asleep from
the testing. The audiologist was there with mom as mom held
Claire. She turned the aid on and put it in Claire's ear.
Once it was in, Claire's eyes opened really wide. She looked
around and was very bright eyed and aware of the new sounds.
Mom teared up... she was so proud that Claire was able to
hear for the first time... she talked and talked to Claire. It was a very exciting time! All these months of testing,
sleep deprivation and long hours at the ENT (ears, nose and
throat) and they have finally paid off! They go back next
week to learn more about the care and feeding of the hearing
aid. The batteries will likely have to be changed every week...
a small price to pay!
Claire got an early Birthday present from the Children's Home
Society - the gift of sound! CHS paid for the hearing
aid. Thanks guys!!!
Claire got home and had a bath. Mom learned the hard way that
the chemicals used for the hearing test (to attach the sensors
or to clean them up) are harsh on Claire's sensitive baby
skin. So a bath before to get her sleepy, and a bath afterwards
to clean her up. She drank another 4oz of shake when she got
home, around 2:30pm, and then in her swing... with lights
AND sound... she dozed off... mom won't be getting any sleep
tonight if she doesn't get that baby awake!
Pix coming soon!
Claire went to sleep around 9am, but was up again after midnight.
Here's pix of Claire with her shiny new hearing aid. Notice
the dog 'tether' to keep Claire from losing it if it falls
out of her ear. She hasn't even tugged on it in the least,
so it should be pretty safe for a while. Mom has considered
painting the dog red.
woke up just shortly after midnight to see dad asleep, shoes
still on, next to Claire, next to mom. Claire woke up, very
upset, around 2am. Mom fixed her a bottle and she drank about
1 1/2 oz and went back to sleep. She did the same thing at
3:30am and 5am. Mom was exhausted.
A friend of the family's offered to watch Claire today. Mom
thought it was a good idea, since the option was to put her
in the daycare, a fine daycare, but still many kids. And with
the wonderful option of having her spoiled while mom went
to work. And she was. She had a big day having every whim
catered to and having someone's full attention. The whole
day appeared to be planned around Claire.
Mom wasn't too sure Claire wanted to go home... guess that
Mom was sent home with dinner too, a very wonderful, unexpected
present, for which mom was very grateful! That also meant
Claire had even more attention when she got home, since mom
didn't have to cook. The family is so very blessed to have
such wonderful friends! Mom felt spoiled too.
She got an early bath and drank 5 oz of shake with bananas
in an instant. Then she finished 3 more oz. She wanted more,
but mom thought that was quite a bit, and put her in her swing
where she fell asleep. Mom put her in her bassinet, just before
9pm. Now, mom will join her, as there is much sleep to be
caught up on... and a big day tomorrow. Claire goes to get
fitted for her hearing aid!
Claire was up at 11pm. Dad took her to feed her and she drank
Here is a pix of Claire trying to get both hands in her mouth...
notice the thumb from the left hand and three fingers from
was up at 11pm, hungry... then never seemed to quite to back
to sleep until about 3am. Mom was up with her... feeding her
more and more and more. At one time, she was actually crying,
and it woke her dad, so he got her bottle ready for mom...
by the time she went to sleep, she probably drank 8-10oz of
shake. Mom gave her some mylacon for gas, which is probably
what ultimately put her to sleep. Mom let her sleep in bed
between mom and dad. She woke up all sweaty when mom woke
her for her dr appt at 7am. Mom gave her a sponge bath and
fed her 5oz of shake before her weigh in. She weighed 9lbs
11oz... probably all from her late night drinking! That is
up 10 oz.
She came home and fell asleep in her bassinet for 2 hours,
til mom woke her for her physical theray appt at 1:30pm. Afterwards,
mom put her in her swing next to the screen door and she was
swinging as a nice breeze came in for some warm fresh air. It may reach 80 degrees today.
Birthday preparations continue to be underway! We celebrate
week from today! It is Claire's birthday 'month'!
Claire never seemed to go to sleep last night. Dad took over
after her bath and after mom fed her. She tried green beans.
Claire seemed to enjoy them, but dad found out a bit later
that perhaps that wasn't the case. She spit them up.
fell asleep just after midnight after having another 2oz of
shake, then another oz or two of bananas straight (she showed
signs of diarreha).
Claire slept through the night.
She was up again at 8:30am, had her meds and a couple oz of
shake with bananas, a little pedialyte as needed to wash down
the meds, and then fell back asleep around 10am. That gives
mom an opportunity to get some work done. She is taking an
anti-seizure medicine, a heart medicine and one antibiotic,
which will finish off on Wednesday.
Mom woke Claire at 2:30pm to eat. She drank 4-5 oz of shake
and seemed to be still hungry. Mom fixed another bottle of
formula and whisked Claire off to get her RSV shot. She weighed in at 9lbs 1oz. She did well, crying for
only a fraction of a second. She fell asleep on the way home.
Claire woke up hungry. Mom fed her and put her in her boppy
pillow. Soon afterwards, she noticed Claire was having another
seizure. It was 7pm and her med wasn't due until 8pm, but
mom gave it to her early. Mom fed her about 4-5 oz of shake
and Claire fell asleep around 9pm. She is sweating a lot which
makes mom wonder. She had also woken up sweaty this morning,
so much so that her sheets needed to be changed. At her RSV
appt, she had a low grade fever at 99. It could be a long
night, but for now, she is resting comfortably. Mom will probably
have to wake her soon to change her. Mom and dad haven't noticed
any more seizures tonight -- fingers crossed. :o\
Claire fell asleep around 9:30pm.
Are Home! Claire is doing really well.
was up at 5:30am and hungry as ever. Mom got up too and showed
the nurse how to feed her, they ended up talking and mom didn't
get back to sleep.
The nurses were going to give her another nebulizer treatment,
but mom didn't think Claire needed it and everyone agreed
to let the dr decide.
She drank 5 oz of formula with pedialyte by around 8am, and
the dr came in to check on her. The dr asked mom what she
wanted to do from here. Mom said she wanted the IV and oxygen
off, and she wanted to go home with the same meds as Claire
started with. She would have to continue the antibiotics (she
was on two of them), but that would be okay with mom. The
dr asked if she had the neb treatments at home, and mom said
she didn't, so they thought it would be okay to stop them.
They decided to try taking Claire off the oxygen again, but
her levels kept dipping, again, so mom gave her some 'blow
by' oxygen and kept testing her toe with a little gadget they
let her use. Her levels would dip into the 80% area, but always
would pick back up to the upper 90's. Mom felt okay with that.
Since she was eating well and had her first bm since Thursday,
they 'halved' the IV amounts for a couple hours, then at noon,
took her off the IV altogether as she was able to keep food
down and eat plenty.
Claire was able to reach her right thumb again and suck on
it... it was a banner day, she thought! Mom and Claire took
a nap and the nurses put a note on the door not to disturb
them, and they really didn't! Mom slept for almost 3 hours
with a few wakenings from Claire wanting a bottle in her mouth
and then dozing back to sleep. It was a good rest.
Are Home! Claire is doing really well. Eating as much as mom
will let her (she doesn't want to see the food twice, so she's
taking it easy with the feedings). Claire wants a bottle in
her mouth all the time, tho she isn't always drinking, and
mom doesn't want to start that.
Mom and Claire got home around 4:30pm and were so happy to
be home. Dad made everyone a big spaghetti dinner and declared
that everyone was going to bed early tonight. By 6:30, dad
fed her more shake and she went to sleep in her boppy pillow
on the couch. That gave mom some much needed time to update
the web journal, as she thought there would be a lot of concerned
friends out there. Mom had over 1200 emails waiting to download,
she is certain that 1190 of those are likely SPAM.
The weather is beautiful today. The dogwoods are budding up
and ready to burst. Mom thinks they are holding off until
Claire woke up around 8:30pm and hungry. Mom gave her her
meds and then fed her until about 11:00pm... She put Claire
down for a bit, but Claire wanted to eat a bit more.
was up and down all night playing with the nurses as mom slept
on. In the morning, the new nurse came in and introduced herself.
She told mom that when the Charge Nurse (head nurse) was missing
one of her nurses, she only had to go to Claire's room to
find the nurse rocking Claire.
Going to the Hospice house was a good move.
Mom slept until 9am. She showered and started back with getting
Claire to eat. She wanted to get Claire off the oxygen, so
they slowly turned down the oxygen until Claire was down to
the minimum amount. They took her off the oxygen, but her
levels kept dipping so they put her back on the minimum amount.
Claire's eating slowly picked up through out the day and in
the evening she was ready for shake. Mom made a Claire Baire
shake of formula, barley and a splash of Pedialyte. Claire
drank about 5 oz that evening and she and mom went to bed
soon after Claire's 10pm meds, antibiotics.
third day in the hospital.
During the wee morning hours nursing staff woke mom as there
were 2 or three of them huddled around her crib. They said
her O2 (oxygen) levels had dipped extremely low. One of them
was from respiratory and was looking her over. She ended up
getting a nebulizer treatment to open her bronch tubes and
help her breath easier.
She fell asleep around 2am, finally, after fussing all night.
She was very uncomfortable. Mom asked the nurses to not come
in to check her vitals, as Claire needed her rest and she
finally fell asleep.
The intern came in and looked her over
Her levels dropped again, up and down... and as morning came,
her intern came to check on her. He still wouldn't give her
a decongestant, as mom thought he should. He admitted that
her head was congested and could influence her breathing,
but suspected it was more from her chest than from her head
that she couldn't breath well. He also believed that the decongestant
would act like a sedative and shouldn't be given to small
children. Mom said she would rather have Claire a little sleepy
and breathing, than awake, not breathing well, and not eating.
Eventually, he said he would give her a decongestant and he
would start her on the antibiotic that they both knew would
knock out the pneumonia.
He felt that, listening to her lungs, he may have missed some
additional congestion there due to her very loud heart murmur.
In other words, he suspected that her pneumonia may have gotten
worse, and ordered chest xrays stat.... that means they actually
come to the room and take the xrays there... As the xrays
were ordered, he spoke with mom and asked if she wanted a
breathing tube for Claire if she needed it. Mom was so very
upset. She said, 'no', that she and Claire's dad didn't want
that for her. And became very upset. Mom felt that Claire
came into the hospital with a small bit
of pneumonia, and a slight fever, and now was sicker than
when she came to the hospital. She was overwhelmed and had
only gotten about 1/2 hour sleep that night. Claire wasn't
eating anything... she couldn't breath well. Mom became very
irritated at the whole situation. At 5am, mom called hospice
and spoke with the on-call nurse there. She said it wouldn't
be any problem to move Claire over to the hospice home and
the nurses there would care for her while her pediatrician
could still come in once a day to check on her and continue
her care. The hospice nurse on-call was wonderful. The on-call
nurse made sure Claire was the first stop for the hospital
hospice nurse in the morning. She wanted to know if mom wanted
to move Claire to the house and mom said she wanted to think
about it. Perhaps mom just wanted the seizures controlled
and the oxygen stabilized first. When the nurse came back
through she admitted they weren't set up for babies but would
make every effort to get what Claire would need before she
arrived. Claire would be their first baby in the house, ever.
They would need a little time to prepare for her, so mom decided
that at 3pm, they would go over to the Hospice house.
The decongestant finally came, she was started on the really
tough antibiotic and mom thought that was all she could do.
Then, the seizures started. Around 6am, mom noticed a small
one. She called the nurse and asked for the 8am anti-seizure
med to be given early. They did, and she got it around 6:30am...
nothing happens fast enough in a hospital. Even after the
meds, her seizures slowly got worse and worse... mom mentioned
to the intern that maybe her meds needed to be increased,
as they hadn't been in a while, and she'd been gaining weight.
He kind of agreed that it was possible. When the dr came in,
she was terrific. Mom suggested the increase in the anti-seizure
meds and the dr went to recalculate it. She said the dose
needed to be increase. Increased it and gave it to her. The
nurse on staff during that time was terrific, she really followed
up on each new order and checked in with mom frequently to
see that things were going satisfactorily. But Claire was
still having the seizures. She was stiffening up and turning
blue... dad and Claire's uncle and his family were there by
then and Claire's parents sat and watched as if there were
nothing they could do.
there was something, and when you are in such a state, you
don't always have your wits about you. Mom rang the nurses
who brought in the new intern who just came on shift. Mom
asked her... something had to be done... and she was wonderful.
She ordered a new anti-seizure(ativan) med and it came fairly
quickly... At 12:45pm, it was given directly into Claire's
IV and worked within 5 minutes... Claire had one more bad
seizure where her O2 level dipped to 0% while mom was changing
her diaper. Then, the seizures stopped. Claire fell asleep.
Her O2 levels went to 100%. Mom laid down and just watched
the monitor. Exhaustion overwhelmed her, but she felt like
she couldn't sleep... she didn't want to wake up again to
find people gathered around Claire's crib again... but mom
was content for the first time all day. She teased the new
intern that the O2 monitor wasn't working because it had 100%
on it, and mom felt that hadn't happened in a long while.
After mom felt the worse of the seizures were under control,
she asked a lot of questions about the new anti-sz med. She
found out that it is a 'one shot' deal, and shouldn't need
it again. Eventually, Claire's regular med would level off
and be good enough for her. That was the theory anyway.
Claire was moved over to Hospice house after being discharged
from the hospital. With her oxygen levels still dipping low
when she was off the oxygen, mom and Claire's uncle packed
her up and drove her straight to the house. Claire's dad brought
the bassinet from home and a few other things Claire needed
like clean clothes and diapers, as hospice didn't have any
things for babies.
The hospice nurse that visits Claire, met them and had everything
waiting. Other nurses, family service coordinator, hospice
volunteers and even the music therapist was there to welcome
Claire. Many were familiar faces to Claire and her family.
The room was beautiful, it was like visiting Grandma. The
bathroom was about as big as the entire hospital room they
just left. Mom knew it was the best decision. They were settled
in quickly and mom continued to work on Claire's eating. Mom
felt like she was starting over. Like when Claire was a newborn
brought home from the hospital. Only now, mom felt like Claire
could learn. But she also felt, deep down, that the hospital
When dad arrived, he said, 'where are the monitors?'. Mom
said, 'There were none. They don't typically monitor at hospice
and what good would it do us to have them going all the time?'...
except mom would be up 24/7 watching them. Claire didn't have
monitors at home, and she didn't plan to have them either.
Evidently, there was a small gadget called a pulse-ox that
the nurses let mom use off and on to test Claire's oxygen,
but only when they were turning the oxygen down.
The decongestant kicked in and Claire was eating a drop at
a time. As she would swallow one 'squirt', mom would squirt
in more milk. Eventually, Claire's eyes appeared to get a
bit brighter, of course that was right before bedtime, but
mom didn't care, she was happy to see the formula was getting
into her system... and giving her a little energy, tho it
wasn't much. Claire finished about 2oz that evening and she
went back to sleep. Claire started to actually drink from
the bottle, before drifting off to sleep around 9:30pm. Mom
layed in the bed Claire in her bassinet. Her arm across Claire
and they were resting. A nurse came in around 10pm for one
of Claire's meds. They gave it to her and mom showed the nurse
how to use the habberman. Mom went to sleep around 10:30 as
the nurse continued to feed Claire. Throughout the night mom
heard the nurses coming and going and whispering about the
adorable baby that had come to visit them. The nurse tried
several times though out the night to feed Claire pedialyte
and Claire drank about and oz or two. She was on an IV at
the hospice house.
second day in the hospital. She had no fever today and her weight is doing much better,
up to about 9lbs 6oz. Perhaps she was dehydrated and the IVs
helped her out there. She had a pretty good day, just trying
to recover. She really wasn't eating today... maybe a few
oz of pedialyte, but she didn't even want that. Mom thought
it was partly a sore throat, and partly that she was congested,
and couldn't drink and breathe at the same time. Mom asked
for a decongestant for Claire, and was told several times
that they didn't give them at the hospital. In Claire's case,
it could act as a sedative and the intern didn't want to give
her one. He said mom should just use saline in her nose and
bulb syringe. Mom wasn't too happy about that. She felt that
the decongestant would clear Claire up quickly and she would
start eating again... and Claire wasn't eating... but she
needed the calories to get better.
The hospice nurse and family service coordinator came by.
During the hospice nurse's visit, she mentioned that the next
time Claire needed 'observation', she should come to the hospice
house. It would be much more comfortable there... evidently,
you don't have to be on your last breath to stay there. She
said that mom could get some rest as the nurses would watch
Claire. The house also serves as a caregiver respite, giving
some rest to mom as Claire is taken care of. It would also
allow Claire's mom to have a little more control over her
care... which mom felt she wasn't given.
There was no sleep to be had that night.
was up most of the night. Her fever seemed to hover around
100-101 until 3am, when it bounced up to 102.8. Mom was up
taking her temps and keeping her comfortable. When Claire
would get to sleep, she'd sleep maybe an hour and let out
a loud cry, almost as if it were in her sleep... she would
whimper for a moment or two and be back to sleep. That would
leave mom feeling helpless, as she didn't want to wake her
to cuddle her, but didn't know what was causing the cry. Mom
thought it could be gas, or congestion - not breathing well,
or constipation. Mom treated it all, but still got the cries.
In the morning, dad took the kids to school and mom woke Claire
for a temp check, meds and feeding, if her temp wasn't too
high. It was 102 at 9am, so mom gave her Advil and had to
go to a meeting. Dad stayed home with instructions to give
her pedialyte until her temp went down, and then start on
the shakes... with prunes, to get the calories up. Dad also
set up an appt with the ped for 2:30 today. When mom gave
Claire her meds, she noticed when Claire coughed, some phlegm
came up. Perhaps Claire is just trying to fight off a cold,
or had a bad sore throat.
Claire didn't drink much for dad, only about 2 oz the entire
morning. Then she went to sleep, mom let her.
Mom took her to her ped appt thinking she would get some antibiotics
and go home. Before leaving mom took Claire's temp and it
was fine, about 98 or 99. Claire's weight was down to 9lbs
even. The dr listened to Claire's chest and decided, with
the high fever, she should be observed... she would need a
chest x-ray and some bloodwork, at the hospital, at least
overnight, would be best for her. Mom told him she trusted
his decision and the dr office had Claire registered by the
time mom got there. Dad was busy, and couldn't be reached
but mom left messages. He found out Claire was in the hospital
and settled in before he knew anything.
She got an IV the same time they took blood, and had her chest
x-rays. She was put on blow by oxygen as her O2 (oxygen) levels
fluctuated a lot. Mom thinks that is probably normal for Claire,
but has no monitor at home to know for sure. Her temp was
100.8 - not too bad. Mom thought it might be on the rise again.
Then back to her room. She didn't sleep well, and didn't eat
well, but was eating some. During the night she had about
4oz of shake. Mom gave her bananas before she got there, knowing
she loved them, and thinking she would worry about the constipation
The dr came in and said that she had a very very slight amount
of pneumonia. So slight that the radiologist nearly missed
it on the x-ray. He said they would give her an antibiotic,
in case she also had strep (mom and dad believed she had a
sore throat), or an ear infection (can't see in her ears since
they are so small.) So the antibiotic of choice would help
clear up anything else she may be having... and he would spare
her the tests.
This isn't the same antibiotic that wiped it out before, but
mom trusted that it would be the best route. Claire was up
a few times during the night, but mom thinks they both got
about 5 hours of sleep.
was up at 4am, eating. Then back to sleep around 5:30. She
had her physical and music therapy and hospice visits. She
did well with the pt, but as Hopsice and mt arrived, she woke
from her nap to have a really high fever. Mom was amazed.
Claire woke up crying, she also had a blanket on her and mom
thought that was why she was so very hot. Mom took her temp,
mostly because she felt Claire was constipated and thought
it would help (she was and it did) but mom read the temp was
103.7 (rectally, that is 102.7 orally and 101.7 under her
arm)! This was about 3:30pm.
Quickly mom got out the Advil and a cool washcloth. In hindsight,
she should have taken her straight to the tub, but didn't
want to give her too great of a chill, when she's that hot,
even warm water would seem cold. Claire's temp came down to
101.3 in about 1 1/2 hours, but was up again at 8:30pm to
102.6(rectally)... so more Advil. Mom knew they'd all be in
for a very long night.
The hospice nurse came by to check on Claire... said she looked
really well, aside from her fever.
Mom decided to keep her comfortable through the night and
call the dr in the morning if she wasn't responding quickly
to the Advil and Tylenol.
was up a couple times during the night, but quickly went back
to sleep before mom could get herself out of bed... about
20-30 seconds... as if she just wanted to let off a loud noise
to be sure mom wasn't in too deep of a sleep. Dad sleeps through
most anything, like the other night when mom nudged him and
when he finally woke up, he jumped. Claire's brother was standing
next to him staring at him. Mom heard him come down the steps
and into the room. Dad didn't. Oh the fun never ends at Claire's
Mom woke Claire with a gentle kiss on her cheek this morning.
Put her straight into her bath, then meds and bottle. She
drank her bottle down fairly quickly then dad whisked her
off with the other kids to school - in the storm. Mom was
trying to shut down the computers and the modem as the lightening
was striking a little to close for comfort. Then off to work.
was up at 3am and finished 4oz of shake by 3:30am... and was
ready to play. Mom was exhausted, but looking at that sweet
little face, eyes wide open, well, mom wanted to play too...
but thought better of it, so she put Claire on her chest and
patted her back to try to get her to go to sleep. Claire didn't
want to go to sleep, and eventually faded into dreamland round
She was up soon afterwards and crying for food. Claire's cries
are getting louder and louder. It is kinda neat. Sometimes
mom and dad just wonder where she gets her loud voice from,
because all the books about T18 say she is suppose to have
a weak cry.
Mom got Claire ready after she had another 4oz and some pedialyte
and took her to daycare, then mom off to work.
Claire's pt (physical therapist) came to her daycare to give
her a 'work out' and little Claire fell asleep shortly after
she left. Her caregiver learned several new things to try
with Claire, and that is an advantage of having pt there.
She will still get pt on Wednesdays too at her home.
When Claire got home, she hung out in her swing for little
while. She finished off her bottle from daycare which was
about 2oz of bananas with some formula added. Mom gave her
her meds around 6pm, a little early, and sure enough Claire
fell asleep around 8pm. No bath, not even a diaper change,
but mom thought it was best just to put her to bed.
was up during the night to eat, and back down again soon afterwards.
She woke up with her new cry... it is louder than it used to
be. She got dressed and went to church. Her uncle, aunt and
cousins were there. One of her cousins came back to sit with
Claire so she could hold her the whole time. Claire loved the
attention and kept her eyes on her cousin most of the mass.
was pretty tired all day, but had a cup of coffee after church
and then got plenty of spring-cleaning done, starting with Claire's
sister's room, and then mom and dad's bedroom. Dad cleaned with
mom. It is so nice to have a clean home, even if not for too
long... with so little 'free' time to really clean, they tend
to just 'pick up' around the house a lot. Since the purchase
of the Floor-Mate, mom has been doing more 'mopping'.
Claire was so good all day. Mom took frequent breaks from cleaning
to go play with Claire, often moving her from blanket on the
floor, to swing and mom's lap for bicycles and other exercises.
Claire was awake most of the day, and went to sleep around 6:30pm
on the blanket on the floor, with another blanked wrapped around
her. The windows were open all day and a beautiful cool breeze
- about 70 degrees - came through the house. Claire was very
comfortable wrapped up.
Around 8pm, mom decided to wake Claire as she had fallen asleep
without her meds. Hated to do it, but had to. Then fed Claire
more and she went to sleep on mom's chest while mom watched
a little tv, and eventually went to sleep herself.
woke up hungry. Mom fed her and got her and her sister ready
for a birthday party that her sister was invited to. Afterwards,
they zipped across town to watch Claire's brother play basketball
and then home.
and dad cleaned up for friends coming over in the evening
for dinner. They have 3 children also and the kids all played
together all night. It is always nice having company. Dad
Claire was in her swing most of the night drinking and from
her bottle. She threw up once, but not too much and quickly
re-joined the party after a clean up.
Later, she wasn't really tired, so mom fed her and dad watched
her until about 1am when the both fell asleep.
was up at midnight and then again at 2:30am... and again at
Mom had an 8am meeting with little sleep, but such is life.
Dad took Claire to daycare. Claire had occupational therapy
with her favorite OC. Claire is so lucky to get on her schedule!
Therapy went well, they were discussing a visit to the orthopedic
dr to get a seat insert made to keep Claire's back straighter.
It may not fix it's growing curve, but could keep it from getting
worse. Afterwards, mom zipped Claire over to her photo shoot.
As always, they got some really nice pix (and used her usual
coupons) to document Claire's 11th month.
was up at 4:30am and didn't go back to sleep until around
6am. Mom was up with her and quite exhausted when 7am came
Dad took Claire to daycare and mom went to work after answering
Claire's site was going through major problems this week.
Last Wednesday, mom upgraded the site, it was suppose to take
24-48 hours for the upgrade to complete and allow mom to update
the site. One week later, it was available for updated. Mom
sends her apologies to everyone for not getting their Claire
fixes... she will make it up to everyone wit more pix very
After work today, mom took Claire and her sister to get her
sister's hair cut at Cost Cutters. There were only 2 ladies
signed in ahead of them so mom figured it wouldn't bee too
long of a wait. A lady who signed in after them, a friend
of one of the hair cutters, was allowed to go before them.
Then they were told it would be another 20 minute wait after
they already waited 40 minutes. Claire was very well behaved,
not making a peep and drinking her bottle like a sweet, fat
baby. Mom was very upset. The hair cutter told mom that the
lady had called ahead and that was why she was called first.
But mom knew better, since the lady signed in after mom and
the lady's name appeared after hers. Mom walked out after
telling the lady that it wasn't right, and telling her that
an hour wait was just too long when there was only two ladies
signed in before mom did (one only took 10 minutes).... whew...
mom is still mad... she doesn't like fibs either... and isn't
afraid to 'call them on it' when they fib. Life is just too
short to deal with mean people.
Claire went to bed at 9:30pm and mom went to bed soon after.
was up at 4am and back to sleep soon after with a little pedialyte
from mom. Mom let her sleep in this morning as dad asked, "Doesn't
Claire have a job or something she needs to get up and go to?".
Mom laughed and said, "her job is in the wee hours of the
morning... when she's awake... and it is the job of keeping
us up".... heheheh!
She was visited by music therapy today, she slept through part
and cried during the other part. Afterwards she was visited
by the hospice nurse who was a 'fill in' but had visted before.
Claire loves having new faces to look at.
Mom noticed some new faces that Claire was making today. One
face looked like she swallowed a lemon. One face was the usual
BM goin into diaper look. Another face she would gaze into mom's
eyes and lift one eyebrow, then lower it and lift the other...
as if she was straining to read mom's mind... or maybe reading
it and was being enlightened.
Claire hung out in her swing in the evening and enjoyed her
shake with applesauce in it. It was a long busy day for the
Her daddy isn't feeling too well and is laying down this evening.
He probably just needs one good night sleep.
Claire went to bed at 10pm. She threw up again after her medicine,
so mom had to give her a little more and she went to sleep shortly
after her bottle.
woke mom up at 2am, evidently he'd been up with her for a
long while and was too exhausted, so mom took over. That dad
is such a good guy.
Mom got Claire up and Dad took her to the pediatric cardiologist
(ped card) for her check up. She goes every 6 months. Dad
told mom that they did an EKG and said that, given her weight
had increased, she could be off one of her heart meds and
soon off the other one. Dad told mom that she weighed in at
- get this - 9lbs 12oz!! That is almost a lb and a half from
her last weigh in with her pneumonia only a few weeks ago!!
The weight gain, along with the news she will be off two meds
soon, made for a BANNER day for Miss Claire!! ... mom and
Claire came home hungry and had about 3oz of shake, only this
time, she had sweet potatoes instead of bananas... she gulped
it down and wanted more. Mom made her a shake with bananas.
After another few oz and a nice bath, she threw it up... must
be her overflow valve - it could also be that nasty medicine
she takes for seizures - it tends to make her gag sometimes.
She just kept eating and wanting more, as if she was starving,
and of course mom wanted to feed her. After Claire's mess,
mom started over with another bath, new pajamas, more shake
until the little peanut finally fell asleep on mom's lap...
slept through the night last night from 10pm until 8am when
mom woke her. Her daycare provider has requested President's
Day off, so mom is home with Claire and getting some work done.
Claire had 6oz of shake and went back to sleep afterwards in
her swing... she's a tired bear. Mom is getting caught up on
her emails from the weekend and a new project at work that she
is really excited about.
Claire has been so good for mom all day. In the evening, she
ate too much and threw up some. Dad took over so mom could get
more work done, and he and Claire watched tv together after
mom gave her a bath. Dad put Claire to bed at 9:30pm, but she
was up soon after mom went to sleep.
slept until 3am and was hungry. Mom fed her about 3oz of shake
and she went back to sleep around 4am. Dad let mom sleep in
and took Claire to see grandma in the kitchen when Claire woke
up. What a sweet daddy Claire has!
She enjoyed being spoiled all day as she was passed around between
aunts, uncles, cousins and grandparents. Every now they would
put her down to let her sleep. She did really well on the 5
hour drive back home from Grandmas, sleeping most of the way,
which kinda had mom worried about her sleeping at night... but
she decided it was worth it for dad to have a peaceful drive
if mom had to stay up and feed Claire all night.
Getting home around 9pm, the family was exhausted and kids went
to bed. Mom changed Claire's diaper, fed her a few ounces of
shake along with her meds and Claire as asleep too. Mom went
to bed shortly after checking mail, helping dad with some work
and researching a businees project she needs to get done quickly.
slept until morning and drank well all day. She was spoiled
by her family and always had a bottle in her mouth, sometimes
even when she was sleeping. Grandma's job to fatten her up,
so, whatever it takes. ;o)
Claire's mom, brother and sister went to the beach. It was beautiful...
little wind and lots of warm sand (but not hot)... Claire hung
out under the umbrella with her auntie while Claire's sister
and brother played with cousins in the surf, building sandcastles
and dodging waves.
Claire came home and slept for a few hours, like her mom and
sister. The fresh air knocked them all out. It was a nice change
from the cold rain they had been getting at home. Claire went
to bed around 11pm, and mom was right behind her.
slept through the night last night. Mom let her sleep in this
morning so she can rest for her sleep deprivation before her
ABR (hearing) test this afternoon. The Audiologist will fit
her for the hearing aid, then she will see ENT (Ear, nose, throat)
dr for a checkup.
Shortly after Claire's appt, mom started packing to go visit
Grandma and Grandpa. It is Grandpa's 81st birthday, and plans
were to celebrate Claire's brother's 10th birthday too while
visiting. The family left at 8pm and it rained for the first
2 hours of the 4 1/2-5 hour drive. Dad was tired and mom took
over the driving in the clear... it was all highway travel,
which is nice driving and the roads were pretty clear of traffic.
The family arrived at Grandma's around 1am and stayed up talking
until about 3am with the folks, while Grandma worked her charms
to get Claire to sleep. Eventually, mom just put her in her
bed and her exhaustion must have just caught up with her.
was up at 3am and didn't go back to sleep until around 7am.
Mom was up with her until around 5:30am, then dad took over
so mom could get about an hour worth of sleep before going to
She went to daycare and had a fine day, then home to hang out
with mom and watch the kids run around the house. Mom wonders
what it will be like when she can hear them too. Claire skipped
her bath and went to bed at 9pm.
11 months old!
was up at 10:30pm and then went back to sleep around 2:20am.
Mom let her sleep in as she had appointments today and didn't
need to get up for school.
She saw her Occupational Therapist and her hospice care family
service coordinator. They wore her out so she had a nice nap
in the evening.