Journal -- 20th Month
was fussy, and mom is thinking that with her random cries, it
is time to get a new prescriptions (even tho there is almos
1/4 of the bottle left). In the morning, Claire looked like
she had a mild seizure. Dad picked it up today, so tonight she
will get her first 'new' dosage and hopefully everything will
be back to normal. She had her hospice nurse come by with the
scale, and Claire weighed in at a mere 12lbs 10oz. A weight
loss from her last weigh-in. She hadn't been eating too well
lately, and on a good day, she has 18oz, but was throwing up
some, so mom is really hoping the new bottle will bring her
back to par.
slept through the night. She had a terrific morning, all smiles
slept through the night. She went to daycare and had a PT and
OT appt today and worked very hard. Especially at PT as she
worked her legs and did lots of rolling over while aided by
the therapist. In the evening she ate really well and was the
perfect baby, taking her meds, finishing up the end of her bottle
and falling right to sleep after laying in mom's arms for only
a few minutes. Mom put her down and she was so exhausted she
was up once with dad and he didn't say anything about her being
up too long, so it must have been just her fussing and wanting
to be held.
was up once during the night. She seemed hungry, and she drank
about an oz or two and went back to sleep.
Mom woke her for meds and breakfast. She has been in a terrific
mood all day long, including her daycare. She had about 6oz
in the morning with mom, and another 13 at daycare. At home,
she drank about 2oz at the end of a bottle, then another 4oz
before falling asleep on the couch. Mom woke her for her evening
meds and held her for a while while she went back to sleep.
She was in bed around 10pm, and mom was too. About 25oz today,
all shake, lots of calories!
Mom was so happy Claire slept through the night... but mom was
up off and on, checking the election results, and then rolling
over and going right back to sleep.
In the morning, it appears that George W. Bush had won, but
until the final speeches were given, no one was making that
announcement. Mom said no matter who won, she was hoping for
a landslide so it wouldn't be days of unrest until the winner
Claire had a hearing appt today to check her aid out, and the
humming seemed to have stopped, so she wore her aid most of
the day... good thing too, since she had music therapy. She
had PT before music and Mom, Dad, Therapist and Claire were
able to check out the two chairs, the KidKart and the Kimbra
Spring to see which would work best for Claire. It seems unanimous
that the Kimbra was the better chair, so the Therapist will
write up a new justification and hopefully it will be approved
by insurance and Claire will be fitted. (fingers crossed). Claire
was on top of her game today at PT, very alert and working very
hard on her legs and neck.
Claire was a bit tired in the morning, probably from her morning
bath, but she was awake in the afternoon and being a sweet little
3am, the two of them had come back into the room. Evidently,
they'd both fallen asleep watching tv, and Claire actually stayed
asleep for mom. When mom got up, she got the kids ready and
woke dad at the very last second so he could put on a baseball
cap and hop in the car to take the kids to school while mom
got Claire up and ready and she got dressed for work.
took Claire to vote, Dad met them. Claire got her own "I
voted" sticker, but they wouldn't let her vote... She was
disenfranchised, they said something about her age, but she
was defiant as she knew she looked younger than she really was.
She's still trying to figure out a way to work the system, afterall,
she was up for all the debates, she knows the issues... she
just wants a toddler's voice to be heard. Mom is still trying
to figure out why folks vote early. There were very long lines
all week for people to vote early, but on election day, there
was no lines no waiting. Claire even sat on the table in her
carseat right next to mom as mom voted.
Claire went to daycare and, after drinking 5oz of ped/juice
for mom in the morning, she had another 13oz of shake at daycare.
At home she drank the rest of a 4oz bottle, then another 8oz
all before going to bed. Mom fixed another 3oz bottle, wondering
where Claire would put it, as she seemed full, but still hands
in her mouth. She put Claire in her bed while she fixed the
bottle, and within 3 minutes, she was back to get Claire, who
had fallen asleep. She slept through the night!
was up pretty much all night. She finally started to doze
off at 2am, but then woke up crying. Mom was exhausted and
getting frantic as she'd already given Claire mylacon for
gas and tylenol for teeth. Claire was so unhappy. Mom woke
dad up, she figured he'd gotten enough sleep by then, and
asked him to take over. He very sweetly acknowledged that
she needed a break and let her get some rest.
Mom woke up in the morning and Claire had been sleeping since
her dad had worked his magic. All mom knew was that 3 hours
of sleep was better than none and she had a big meeting that
afternoon and needed to get ready for Claire's Ped Orthopedic
The appt went well. They took xrays of Claire's spine and
neck and saw nothing wrong aside from the twisting. The dr
said it could all work itself out (straighten itself out)
as she grew, but thought that a second opinion would be in
order. So he suggested a visit to Shands Children's hospital.
Mom needed to make an appt with the geneticist there too,
so it could be a two-bird-one-stone thing. He reiterated that
seating would be beneficial and mom said that it was in the
After the appt, mom went over to see the new Kimba Spring
chair that had come in and compare it to the KidKart to see
if she liked one over the other. The Kimbra seemed a bit lighter
-- both were very heavy and mom was wondering how she would
manange this 'stroller' without quite a few visits to the
gym to work out... *QUITE* a few... heheheh!
Mom got to work and got to her meeting on time. Then back
to work to get some new ideas rolling.
Mom took Claire back home and dad watched her until he took
her to her PT appt. Then he took her to daycare were she was
about 2 hours and 5oz later and mom brought her home after
a long day at work. At home, Claire didn't drink much and
mom put her on the couch with a bunch of toys. Evidently,
she wasn't too impressed with mom's selection of toys, as
mom came back to check on her after starting dinner only to
find she fell asleep sitting up.
Mom thought they might be in for a long night, so she got
Claire to bed a little earlier than usual (including meds
a little earlier) and went to bed herself. Sure enough, the
little peanut was up about 11pm and dad came to get her.
was a busy day, and after church, Claire's sister took a nap
and her brother watched football and played in the yard. Claire
had a fun Halloween day. She dressed as little blue bear and
was cute and cuddly as her usual self. Her sister was Cinderella
and her brother was the Grim Reeper... boys will be boys.
The kids had fun dressing up and they went to a retirement
home, then off to visit friends and hit the busy neighborhood
for lots of candy. Pictures coming soon.
had a pretty good night. She just hung out all day on the
couch... eating and playing with the kids. Mom spent much
of the day cutting out a dress for Claire's sister, and fixing
a costume for Claire's brother. They all watched the big football
game and were very disappointed with the outcome. Oh well,
just a game.(x-large
pix). Claire did have a good photoshoot while enjoying the
game. She was decked out in her football 'garb'.
was up until after 1am. She settled down several times, but
then let out a fuss and started crying. Mom started by feeding
her, but after a couple oz she seemed disinterested.... mom
put her down... Claire started fussing... mom picked her up...
tried feeding again... Claire drank a little... mom put her
down... Finally, mom tried Tylenol. Claire had her hands in
her mouth a lot and with that new tooth, the droolling and
the basic overall pitiful look, mom is thinking it would help
her out a little, and maybe everyone could sleep. By 1am,
Claire was still not happy, and her cries were just as pitiful,
so mom gave her some Mylacon. Mom also noticed a very firm
BM in Claire's diaper, so perhaps she was also working on
that. Shortly after the Mylacon, Claire settled down and finally
stayed that way. Good thing too, as mom was running out of
Claire slept until mom woke her in the morning. She got her
antibiotic, seizure med, decongestant and then finally her
bottle. Of course mom took some pix along the way. A face
cleaning and a cute outfit later and Claire was off to daycare
and mom to work.
was pretty tired today. She woke up to find the Red Sox did
win the World Series. Dad was really happy, but nothing compared
to Claire's brother bouncing off the walls. Claire is hoping
that dad's taping of the final game went well.
Mom gave Claire her nebulizer treatment, since she didn't
get one last night (the Peanut was just too tired).
It was her first day back to daycare and mom was glad to be
going back to the office. Mom started her off with 3oz of
Juice and pedialyte and then she finished 9oz of shake at
her daycare. At home, she drank another 8oz, but never seemed
to be full, but very tired. Mom gave her an evening nebulizer
treatment and fed her a little more then put her in her bassinet
was up at 4am, appearing hungry. Mom was certain that if she
fixed a bottle, Claire would be back to sleep before she was
done fixing it, so she got up and checked on her in about
2 minutes and Claire was back asleep, no bottle.
By 6:30am, mom was up helping dad get the kids off to school
and Claire was just waking up for bottle and meds. After she
drank, mom cuddled with her and she fell back asleep in her
arms, so mom put her back down for a morning nap.
Claire was up around 11am for her bath, then PT and OT, and
home for Music Therapy (MT). She was very vocal and energetic
all morning and her PT was very impressed. She had some nice
loose coughs and even coughed up a little phlem, so they are
finally getting more productive. After MT, mom tried giving
her her antibiotic, but she had just finished a bottle, so
she didn't want anymore to 'eat' and pushed it out with her
tongue. Shortly afterwards, her hospice nurse came by to check
up on her and she had fallen asleep (MT is very relaxing),
so her nurse had lots of cuddle time with her and weighed
her in at 13lbs 3oz. Her nurse said that mom should continue
the nebulizer treatments at least two more nights and that
the antibiotic will really make a difference by tomorrow.
She will check back in on Claire on Friday so she can leave
a note for the on-call nurse at hospice. She said Claire was
sounding much better already, and not losing weight, she looked
good, good color too.
Claire fell back asleep after her nurse's visit, in her boppy
pillow. Mom will let her sleep for a while, she had a long,
Mom was able to make a little side trip today while dad watched
Claire and mom picked up some fabric. Claire's sister wants
to be a Disney Princess for Halloween, and mom got some fabric
for Sleeping Beauty (plan B will be Cinderella, as she already
has that dress). Claire's brother wants to be the Grim Reeper,
so mom just needed a ton of black fabric... the challenge
there was getting it for a good price, not a problem. Mom
will be very busy on Saturday getting costumes ready for the
big night. Claire's brother has testing starting on Monday
after Halloween night, so there's a real challenge there.
Probably a Sunday afternoon nap will be involved.
In the evening, Claire was planning on staying up for the
lunar eclipse and the Red Sox game. As she and mom played
on the couch, mom noticed something new in Claire's mouth...
a TOOTH! Her second one!!! Mom was so excited!!!
Later, mom took her out to see the moon, but her eye's started
getting heavy... it was nice and dark out and not too cool,
just a beautiful evening and all that fresh air was affecting
her. Claire figured the Sox would be on again tomorrow night,
because the odds of them sweeping the World Series (after
winning 4 games in a row in the playoffs) was unheard of.
Especially when they hadn't won a series in 86 years, let
alone a sweep.... Claire wasn't too worried about missing
out, besides, dad was taping tonight's game. Claire went to
bed and went straight to sleep. Good baby. Mom followed shortly
slept comfortably through the night. Mom pulled the bassinet
closer to her bed so she could keep a closer eye on Claire without
putting her in the bed with them. Claire still has the cannula
on for extra O2, but mom has it set pretty low. Mom lowered
it last night as Claire's little nose was tender and she had
a slight nose bleed, likely from the oxygen, tho it goes 'through'
water in the concentrator.
Claire was up at 6am and crying. Mom gave her a couple oz of
food, but at first she just wanted to be snuggled and happy
to be in her mommy's arms, then she decided she was hungry and
ate, after her meds. She snuggled a little more afterwards and
fell asleep. Mom put her in her bed and went to help dad get
the kids ready for school.
Claire slept until close to 1pm. Mom felt that sleep was the
only thing she really hadn't had much of in the past few days,
since she's been eating so well, and thought she would need
it most. At 1pm, mom pulled the covers back and she eventually
woke up. She had her antibiotic and drank another 8oz of shake,
the last 2 had formula in it. Mom took a shower and when she
got out, Claire had fallen back to sleep. The problem is her
2pm meds, mom will have to wake the peanut for them.
Mom called the hospice nurse to double check that the dosage
was what the dr prescribed. The nurse said she didn't get why
the pharm couldn't read the script, since she wrote down the
dosage for her records from the original script at the drs office.
Okay Okay... time to change pharmacies... there is a new one
going up a mile from Claire's home, mom will likely switch to
that one when it is opened.
Claire had a good evening, finishing off the day with close
to 22 oz. Mom put her on 'blow by' oxygen tonight and Claire
had meds and fell asleep on her boppy on the couch before mom
could give her her bottle. When mom moved her to bed, she woke
up and nearly finished her bottle, as she fell asleep in mom's
lap drinking. Mom put her to bed close to 11pm and got to bed
around 11:30pm too.
was breathing hard at 3am. Mom got up and cleaned out her
nose, gave her a decongestant and changed her position and
put her back down to go to sleep. She seemed to be breathing
Mom woke her up before breakfast and cleaned out her nose
again (saline and nose syringe) and gave her another decongestant.
Claire drank 3oz of shake and went back to sleep. She wakes
up every 15 minutes or so, and then looks around and goes
back to sleep. She isn't sleeping too deep.
Mom spoke with the drs office and the ped won't be in until
this afternoon, so Claire has an appt with him today. She
spoke with Claire's hospice nurse who said she could come
by around noon, or meet them at the drs appt. Mom is hopeful
an antibiotic will do the trick, but thinks that after the
appt, there will be a chest xray ordered and probably a blood
test to help determine the nature of what Claire has. The
poor little peanut.
The drs visit went very well (mom thinks). Claire was up to
13lbs 5oz!! He listened to her and agreed her lungs were 'gunky'
but said they'd been much worse before. He said that Claire
could use help from a nebulizer, used for opening bronchial
tubes, as she was wheezing. He wrote a prescription for that
and for an antibiotic. Mom's favorite for Claire, Zithromax.
It was the one that seemed to pull Claire through with every
pneum (when the drs would finally give it to her). Mom is
confident Claire will be on the mend soon (fingers crossed
and prayers to heaven!). No bloodwork, no xrays. And that's
more than fine with Claire.
Claire's hospice nurse met them at the drs appt, and helped
Claire and her mom at the place where they needed to pick
up the nebulizer. She's so wonderful!
Afterwards, mom picked up the kids from school and dropped
off Claire's prescriptions and then home. Dad said he would
go pick up the prescriptions a little later. Mom had enough
solution to give Claire a nebulizer treatment shortly after
they got home.
Mom fed Claire more food, this time, adding some formula so
it would stick to her 'ribs' and Claire enjoyed it. Then mom
and dad fixed dinner and mom put Claire back on her oxygen.
She'd been off it since just before her dr appt and had very
nice color the whole time.
After dinner, dad went to get the prescription, but only came
home with the nebulizer solution. Mom hated to tell him there
were two prescriptions and he didn't get the antibiotic, he
wasn't too happy, but went out again. Shortly afterwards,
mom got a call from him (couldn't be good news when hubby
calls from pharmacy). Evidently, they didn't get the prescription...
mom vowed she gave them both in together and dad said he'd
call back. He called back and said they did get the prescription,
only they didn't fill it because they couldn't read the dr's
instructions, and left a message for him to call them. Well,
it was late enough in the day, so odds are the dr wouldn't
have gotten the message until morning. Dad was not happy,
and he called mom. Supposedly, no one at the pharm knew about
this until dad was there for a little while, if they knew
and told him up front, he would have understood the situation.
Mom asked dad (who wasn't too thrilled about waiting at the
drug store) to give her just 2 minutes, she called hospice
and asked them if they could help. Hopsice suggested just
getting the script filled so dad could come home, and they
would continue to work on what the dosage would be as the
prescription was filled and brought home, then mom could give
Claire the meds with the proper dosage. They offered to call
in and give them a dosage. Mom told them how much Claire weighed
so they could figure out the dosage. Meanwhile, at the store,
the person helping dad, after communicating with
hospice, decided her shift was over and started leaving. On
her way out, she passed the buck to a pharm who refused to
fill the prescription, since the instructions were not legible
and the drs office hadn't called back... this caught dad's
ear. Poor dad. Didn't say anything... just listened to the
conversation between the two. The first pharm convinced the
second that she had been working to get confirmation of the
dosage, and filled the second shift pharm in.
called in an approximate dosage based on what she'd gotten
last spring when she was at the hospice house, so the pharm
would fill the prescription, and then the pharm called mom
to say the dosage didn't seem right (as this strength was
higher than in the past), so they wanted to call the nurse
back (they didn't know she was at hospice) and needed the
number, mom gave it to them. Finally, after a very long wait
on dad's part, the prescription was filled. Hospice called
mom back with the correct dosage, confirmed by the drs on-call
nurse, and when dad got home, mom gave Claire her antibiotic...
Dad was at the pharmacy a while and used his time wisely...
he was 'hanging out' with the store manager giving him a nice
long story about his evening... asking, 'am I expecting too
much?'... the manager kindly agreed that he wasn't... and
mentioned that customer service isn't high on the list of
classes at pharmacy school.
Claire took her meds and drank another 2oz (26oz for the day)before
snuggling with mom and falling asleep. Mom put her back in
her bassinet and covered her with a blanket. Sweet dreams
didn't seem to ever go to sleep. Mom checked on her around
1am and she was still awake but being very good. Just breathing
a little hard.
She seemed tired, mom fixed her another bottle of ped/fruit/barley
and she drank 4oz and mom held her for a while while she slept
in mom's arms, then mom moved her to the swing for a little
while and watched her doze in and out. Eventually, mom put
Claire between her and dad. Claire still has a nastly loose
cough but no fever.
In the morning, Mom woke Claire for meds and called hospice
to have a nurse come out and listen to her. Mom bathed Claire
with the oven cranked up and the kitchen doors closed to keep
th warmth in the kitchen. Mom took off Claire's cannula (oxygen)
and Claire enjoyed her bath, it was the first in a couple
days Claire had a bath
as mom didn't want her to catch a chill, but decided it was
time to clean that baby up. After her bath, she finished off
her 7oz bottle and started another 6oz, still no formula in
her diet as mom is afraid it will congest her even more. The
hospice nurse came over and confirmed that her lungs sounded
gunky (they usually did anyway) but mom thought there was
a little 'squeek' to her breathing. They took her O2 levels
and she came in at low 90's/upper 80's without the cannula
on. She didn't really know what to tell mom, and mom didn't
know what to ask for, so they decided to put the O2 back on
Claire and continue what she's doing until tomorrow when Claire's
nurse could come see her, and Claire could see her doctor.
Claire was pretty miserable in the evening. Mom thought she
might want some formula, so she offered her a shake with formula
in it, but Claire only drank an oz of it... so mom gave her
more of the pedialyte shake. Claire had 28 oz of fluids today,
so Pedialyte, some ped shakes with fruit and barley. At least
her appetite is good, and it seems to be soon after a decongestant.
was still sick today. That cold is really getting her down,
she's been more fussy than usual (tho she typically isn't
fussy, so that isn't saying too much). Mom stopped giving
her formula and she is on a diet of ped/fruit/barley in her
shakes. She loves them. First thing this morning, mom gave
her about 4oz of bananas, straight from the jar, by spoon.
She couldn't eat them fast enough. She did eat really well
today, considering her 'under the weather' -ness.
spent much of the day feeding her and putting her in her swing
(so she'd be upright) to sleep and Claire spent much of her
day eating and sleeping. She was very congested and mom gave
her decongestants every 6 hours to keep her head cleared and
she continued to have a very loose, very loud cough, but keeping
her food down until she got her decongestant around 10pm,
and that made her bring up about 1/2 oz of food. Overall,
she had about 22oz for the day. She does have a good appetite,
so mom's hoping it is just a cold. Mom put her to bed between
mom and dad so she could keep an eye on her as she was waking
up with a cry and her breathing looked a little labored. She's
got an O2 cannula on tonight.
slept through the night in her bassinet and was a very good
baby. She would wake up with her nasty cough, it is loud and
loose sounding, and she'd cry like it hurt, maybe a sore throat.
She went to daycare and mom told her caregiver that Claire
was coming down with a cold. There was a child at the daycare
who was getting over a cold, and evidently it was 'going around'.
Topped with Claire having a flu shot
on Wednesday and an RSV (upper respiratory) shot on Thursday,
it seemed she was bound to get some little thing. Mom is trying
not to worry, just keeping Claire's tummy full and making
sure she gets lots of rest.
Claire seems to breathing fine, but given that she has a cold,
mom plans on keeping her on oxygen until she feels better.
She called hospice to see if the nurse could come listen to
her, but her nurse wasn't in today, and they said they could
send another, but mom felt that another nurse wouldn't know
what Claire typically sounds like (as she typically has a
gunky sound in her lungs anyway), and though that if it is
just a cold, it could wait until Monday, if it gets worse,
then they could send out a nurse over the weekend. Claire
had about 20oz today, so she's at least eating well.
was up around 4am, she wasn't making any noises, but mom woke
up and checked on her. Knowing she would cry if she were hungry,
or chew on her hands, she was just laying there with her eyes
open looking around. So mom let her stay in her bed and went
back to sleep.
In the morning, Claire was fast asleep, and mom wondered just
how much sleep she really got, and if she often woke up like
that and was a sweet baby, hanging out and going back to sleep
on her own.
She was up for meds, then 4oz of shake with vitamins and fluoride,
then another 4oz of shake before heading out to daycare. She
will have Music Therapy this morning at daycare, since she
missed it yesterday. She will have her RSV shot later today
(dad will take her) and she will meet with hospice at the
end of the day (mom will meet them at home so dad can run
errands). Guess mom's busy Wednesdays are spilling over to
busy Thursdays for Claire, but mom has lots of help. (Thank
had a good night's sleep and was up for meds and shake (first
4oz with vitamins - yuk!).
Claire started her day off with a bath, then off to the dr's
office for her check up. She weighed in at about 12 1/2 lbs
and mom thought with all the BMs lately that she'd lost some
weight (a heckofa way to loose weight). The dr said she could
get a flu shot, so she got the first half (they divide the
shots into two when it is the child's first flu shot). Last
year, her sibs got the shots, but this year, the family won't
be getting shots, and Claire will still be very exposed between
daycare, dr's visits, sib's exposure and therapies at the
pediatric rehab center. She goes back in 4 weeks for her second
shot (nurse only visit) and her appts will now be every 8
weeks instead of every 6 weeks. Goo Grrl!
After dr's visit, she was off to PT where she was on her tummy
on the ball again... legs outstretched and the first time
she came down on her feet, she stood! Of course, she was still
leaning on the ball, but using her legs like she will need
to when she learns to walk. Claire needs one of those big
balls at home for playtime with mom. Ideas for Santa.
After PT, Claire was home and drinking another bottle. Then
mom put her in her bassinet to see if she would sleep, but
no luck. She didn't sleep all morning or all afternoon. Later,
after the kids school was out, Mom and Dad went to meet with
one of the kids' teachers, Claire slept through the visit.
It was nice meeting with the teachers and hearing all good
things. Mom and dad requested the meeting to kind of keep
the lines of communication open, and see how to get/keep their
child on track. It was very productive... and good things
are in store.
After the meeting, mom and dad went to watch Claire's sister
in her afterschool dance program. And then everyone went home
for dinner. It was pizza night (as every Wednesday is) and
a family friend brought over the pizza. After dinner, he watched
baseball with dad and held and fed Claire.
Claire kept eating and eating, she had about 22oz for the
day, and ended with about 12 of those oz in a 2hour period
at night. Mom decided to just put her down, even tho she didn't
seem too tired, because she wanted her little tummy to settle
down and didn't want to see any of Claire's food for the second
time. Claire eventually went to sleep, tho she really wanted
to stay up for the entire game (7th game of the American League
Playoff Series) Dad was cheering on Boston, and mom decided
the game would go too long for her to watch, and she'd just
get the score in the morning. Besides if Boston lost after
all they'd been through, she didn't want to hear what dad
had to say... it couldn't be good. Once Claire was settled
in - half asleep as her eyes were getting heavy, around 10pm,
mom followed right behind.
was sleeping through the night.
She had a banner day as she drank 6oz of formula/ped in the
morning, and at daycare she had another 10oz. At home, she
polished off the bottle with another 2 1/2 oz in it, and then
another 4oz of shake. Later in the evening she drank 5 more
oz and fell asleep. That is roughly 27oz for the day... Go
was up at 3am. She seemed like she could be hungry(hands in
mouth), but before mom got her bottle ready, she had thrown
up. Mom thinks she just had her hands in there too far. Dad
cleaned up the bassinet while mom cleaned up Claire and offered
her some shake. She didn't seem interested, but still seemed
hungry and mom realized she was congested... probably just
the thing that woke her up to begin with. Mom gave her a decongestant
and held her for a while and she looked very tired, so mom
put her back to bed.
In the morning, mom woke her for meds and breakfast. Mom gave
her fluids to help with congestion and constipation, then
off to daycare. Claire drank 4oz of formula with ped mixed
in for added flavor.
slept through the night.
Mom and Claire slept in a little longer than usual, and mom
woke Claire for meds and bottle. Mom was planning on bathing
Claire for church, but time got too short and Dad's cousins
were still in town, so he opted to stay home with Claire.
Good thing too, as he was able to give her some time and she
drank 6oz with him. When mom got home it was a good time had
by Claire as she finally got her bath, and she loved it!
Lately, Claire has had a blister looking sore on her heal.
It is puzzling mom as the only thing Claire is close to that
is 'hard' is her carseat. Mom put some neosporin and a bandaid
on it and a sock.
She hung out at home all day, from boppy pillow, to someone
holding her and back and forth. She took a nice nap after
grandma arrived and wanted to play, but mom realized after
a couple hours that Claire needed to wake up, and also that
it was pretty warm, so she opened the windows and turned on
the attic fan, and soon it was cool, and Claire was up. She
had socks on and a one-sie outfit.
Claire took her meds in a timely manner and was asleep by
9:30pm, and mom followed her. It was a long, fun weekend.
Claire drank about 18oz of shake today.
slept through the night.
She was up early and mom was feeding her and getting her ready
for a bath. She enjoyed a nice cool morning at her brother's
flag football game, then home so mom could bake some yummy
brownies, cookies and finish off the chilli for post game.
It would likely be too late to have it then, but you can always
In the afternoon, dad's cousins arrived for the game. Everyone
had chilli and then off to the big game... number 7 vs number
6! After a terrific game, and getting home close to midnight,
everyone was exhausted and ate sandwiches and crashed and
burned, including Claire. She was up when mom got home and
mom fed her more of her bottle and she fell asleep quickly
in her bed. She had close to 20oz of shake today.
slept through the night. She made a few noises, and at one
time it sounded like she hit her 'cup' that the O2 comes through...
she will do that sometimes if it is in her face... but when
mom checked on her, she appeared sound asleep. Around 3am,
a thunderstorm was passing through and woke mom up, but she
had little trouble going back to sleep.
Claire's sibs are off today, and dad has been so gracious
as to watch them. They are old enough that they can entertain
themselves and he can get work done, so mom can get to work.
Claire was up for her usual med and breakfast. Mom put her
vitamins in her shake... they are nasty smelling and probably
not too great tasting either, but she downed them quickly
in 3oz of shake... mom as pleased. It was only the second
time mom had given them to her, but it will be a morning ritual
now. They have fluoride, in them to help Claire's 'tooth'
grow strong... and of course, the additional teeth hiding
just under the gums.
Claire was at daycare for a short while when mom had to come
and get her for PT. Today, she played with a few toys... she
gripped them and then kinda zoned out... the therapist said
it looked like she was thinking about how the toy felt in
her hands. She also layed her on a very large ball and straightened
out her legs... Claire kept flexing her knees and hips,
but eventually kept them straight long enough so the therapist
could roll the ball around and Claire put her feet on the
floor and stood there for a minute or two. Mom was so very
fascinated!! It looked like Claire had all the 'tools' to
stand, just needed more muscle tone. It was very cool for
mom to see Claire stand as she continued to lay against the
ball. The therapist also put Claire on her leg in a 90/90
position (sitting upright) and then leaned her head over her
knees and toes... then lifted her up by her bum (about an
inch or two) and let her come down with a bounce. The therapist
telling her all the while how fun it was... and when she stopped,
Claire looked at her and started to talk to her. Claire had
a peculiar look on her face. The therapist looked at Claire
and said, 'do you want me to continue? Is that why you are
looking at me like that and talking?'... so she continued,
only to have Claire use her own legs to lift bum up and the
therapist guided her... and the therapist looked up with the
biggest eyes!! She was amazed at what Claire had done and
mom was too!
Mom took Claire back to daycare and showed Claire's caregiver
how to help her 'bounce', and mom went back to work. Meanwhile,
Grandma and Grandpa were comin into town for the big game!!
slept right through the night. She had a pretty good day today,
probably close to 19 oz for the day. In the evening, mom got
an email from the hospice nurse with the results from the
med levels... she is about a 6, where normal is between 4
and 10, so Claire's in a good range and her meds won't have
to be increased any time soon. Mom is very pleased, esp with
the weight gain, to not have to increase the dosage is great.
Mom gave Claire a haircut today and a bath. The Claire Haire
was getting a bit unruly, and mom took matters into her own
hands. She thinks it looks pretty good and Claire thinks the
jury is till out on that.
In the evening, Claire relaxed, had her bottle and hung out
with mom doing exercises. Mom had her little legs doing bicycles
and stretches, then her arms, even her hips and Claire was
all smiles... she loves the stretches! Mom could see her little
heart pounding and her breathing heavier, as if she had been
running, so it was time for a little break from the stretches,
and evidently, the cardio workout.
Claire was in bed by 9pm, mom gave her her meds early so everyone
could get some much needed rest.
Luke Winston-Jones and his mom in your prayers. He has Trisomy
18 like Claire. Read
more about him.
Keep Baby Charlotte Wyatt in your prayers too. She was, born
weighing just one pound with serious heart and lung problems.
The courts have ruled that she will be allowed to die in a case
similar to Baby Luke's.
While these are very hard decisions for doctors and courts,
nothing runs deeper than a mother's love for her child.
To send an email of support, you can visit
slept right through the night and not showing signs of seizures
or fever. She is eating better and appears to be back to her
old self. She's been a little more tired, but hopefully more
and more food will help that.
She had a busy day, starting with PT and OT. She fell asleep
after PT, so was useless during OT. She came home and was
still asleep for Music Therapy, and after that, off to the
eye dr appt.
The eye dr said she had a condition that makes her eyes 'jiggle'
(not the technical term of course). Mom asked him to write
it down and it will be posted. She said she wanted to look
it up and the dr cautioned her that looking this up may be
upsetting as it can be very serious, tho some people with
it can get a driver's license and see fine. Mom said she was
aware of misleading websites and would proceed with caution...
mom doesn't feel like she needed to avoid looking it up and
reminded him that she's had much worse news in the past and
could handle whatever was on the Internet... she added that
she found comfort on the Internet when she got Claire's initial
prognosis before Claire was born and was able to see survivors
and know that it didn't have to be the way the drs said it
was. He understood.
After the dr appt, mom learned that Claire's hospice nurse
was going to come out to the house, but since mom was only
a few miles from the Hospice office, she popped in. It was
nice seeing some of the folks there, while Claire was doing
well, and when the nurse weighed Claire, she came in at 13lbs
even!! A banner day!!
had a great night and seems to be doing better. She ate 20
oz today, tho some was squirted into her mouth to 'kick start'
her eating today.
made a few noises during the night, but when mom when to check
on her, she was fast asleep.
She was awake fairly early and didn't go back to sleep as
her brother was leaning over and kissing her every time he
would walk by her. She was warm this morning, about 101 degrees
F rectally (that's 100 normally) and mom didn't think that
warranted Tylenol. She soon became cool, so it may have just
been that she was too warm in her bed.
She had very mild seizures throughout the morning (maybe one
every 30 minutes from 8am until about 10:30 when she went
down for her nap. Mom put her cannula on her to help her breath
easier and gave her some Dimetapp to help her breathe and
eat a little better. She didn't sound congested, but mom didn't
want to take any chances that that was why she may not be
eating well, and she hasn't had a decongestant in weeks...
She drank about 4oz of shake... tho painfully slowly.
In the afternoon, after her nap, she woke up and had her meds...
she was up around 2pm, and mom took the meds out of a new
bottle, just in case it was a little stronger. If it is stronger,
and she does well, she will likely start eating better and
feeling better as a result. Her body temp seems to be nice
and cool, so maybe her little bug has gone away. Mom is home
with her all day to see that she eats well and keep an eye
on that temp and the seizures...
She finished the day with about 17 oz of food.