Journal -- Seventeenth Month
Claire was up at 2am and mom fed her some shake. She had about
2 1/2 oz, then went back to bed, only to wake up again at
4:30am. Mom didn't think she would be hungry, and she wasn't,
just congested. So mom gave her some saline nose drops, sucked
out the nose, and gave her a decongestant.
Mom wasn't too thrilled that Claire didn't want to go to sleep,
or that she wasn't comfortable no matter what mom tried, but
overall, Claire seemed to be in a 'party' mood as she spent
the rest of the morning talking and swing at Red Dog. She
had a lot to say, and mom was content to listen to it, knowing
that she wasn't crying or fussing, just being busy. Mom
let her be and eventually, around 6:30am or so, Claire fell
asleep. Just in time for Mom to wake up, but mom let Claire
sleep in a little longer. Her daddy has a nasty cold, so the
two of them snoozed while mom got the kids ready for camp.
Eventually, mom woke the Claire and took her and the kids
It appears Claire has a just-barely-a-hurricane directed just
west of her town. She isn't too worried, but it will be her
first, and it is named after her aunt... who is catching grief.
The family should see it come by around Thursday sometime.
Mom has enough meds to cover a couple weeks, so that darn
health plan shouldn't be much of a bother.
Well, nix that... there are two hurricanes headed for Claire's
neck of the woods. Mom isn't too worried at this point. The
thing with hurricanes is you have so much warning... days
even, not like a tornado that springs up within minutes. Fingers
crossed that all will be well.
Claire had a good day at her daycare. Came home and drank
a couple oz, played on the floor by her mirror while everyone
ate dinner, then fell asleep, so mom moved her to her bassinet.
Around 7:30pm, she woke up and drank 5oz of shake (minus the
cereal) and decided to hang out in her boppy watching dad
play on his laptop. Mom calls it play, dad calls it work.
Mom got a message today that Claire's OT appt on Thursday
was cancelled. Mom was pretty upset, esp when they said it
was a scheduling conflict, and then said the next available
is Sept 1. As it is, Claire has been without any therapy for
months and mom waited 2 weeks for this appt for them to call
two days before and say there is a problem... and mom hates
the idea of waiting this long, but to prolong it another two
weeks... once again, mom is frustrated. Hopefully she will
get in sooner (let's hope!).
Claire drank another 6oz of shake before bedtime and was asleep
Claire amazingly slept through the night. Mom check on her
a time or two and she was very cool, so mom let her sleep
through. At 7:30am, mom woke her for breakfast and meds, she
drank 4oz, and may have wanted more, but mom was a little
hesitant and decided to feed her her next meal a little sooner,
but to be sure this was all digested, as one cough could bring
it all back up again.
Her next meal was 5 1/2 oz of shake, and by 2:30pm, she had
another 2 1/2 oz.
By 8pm, no fever and she drank 6oz of shake then another 3
by 9:30pm and meds, then she was asleep by 10pm.
Claire had a rough night. By 2:30am, she was fussing and had
a temp of 102.1 and mom gave her Tylenol and a decongestant.
by 240am, it was up to 102.8, but mom was confident that it
would come down soon. At 2:50am, it had come down to 101.8
and mom put Claire down to sleep in her bassinet.
She was up again at 8am, her fever was back up to 101.8 and
mom gave her Tylenol and a tepid bath along with more decongestant.
At 8:20am, after her bath, she was down to 100.9, then 100.2
at 8:40am. She drank 4oz of pedialyte by 9:30am. At 10:30am,
her temp was still down at 97.3. She just finished 4 more
oz of ped/fomula mixed. Mom called hospice, and they sent
over a nurse around 11am. She looked Claire over and decided
that mom was doing all she could, but thought putting her
on O2(Oxygen) with her nasal cannula would be a good idea.
Mom agreed, it could help her breathe better, tho her color
was very good, with the fevers no one really knows what Claires
O2 sats are and since Claire isn't monitored for those, it
could only help the peanut.
At 2pm, the fever came back. It was up to 102.2 and climbing.
Mom gave Claire tylenol, her meds and a decongestant, by 2:30pm,
it had rose to 103.7, and Claire was in for another tepid
bath. After her bath, she was down to 101.4. By 3:30, she
was ready for her nap with her nasal cannula and she drank
2 1/2oz of shake.
By 4pm, her temp was back to 102. At 4:30, mom had it back
down to 100.3 and Claire drank another oz 1/2 of shake. At
6:30pm, her temp was still down at 99.7, but likely on the
rise once the Tylenol wears off.
By 7pm, Claire drank another 4oz of shake, and by 8:10pm,
her fever was back up to 102.5. Mom gave her another Tylenol
suppository and she broke the fever soon after as a very sweaty
little baby. She drank another 3 oz of shake. She was nice
and cool for the rest of the night. By 10:30, she got her
meds and decongestant and was soon fast asleep. She had about
19 oz today. Mom is confident if she can keep the calories
in Claire, she would have a very good chance of recovery.
Towards the end of the day, Claire was drinking on her own,
and mom had her up to drinking shakes.
Claire was up at 9am and was very congested. Mom pulled out
all the tricks to clear her little head so she would want
to eat. She put saline drops in her nose every few minutes
and sucked them out with the 'nose-sucker'. With the decongestant
and pedialyte, she was soon cleared up, but not really big
on eating. She pretty much just nibbled throughout the day
and by 3:00, she came down with a fever. It was 104 rectally
(so that is 103) and mom gave her a Tylenol suppository and
put a cool wet washcloth on her head. (In hindsight, mom thinks
a tepid bath was in order.) By 4:30, the temp was down to
102, then by 5pm, she had it down to 100.4. At 6pm, she was
at 99 degrees and then drank more, about 2 1/2 oz. Most of
the day, mom was squirting food in Claire's mouth. She was
exhausted and not wanting to suck, but was hungry and swallowed
every drop that was put in her mouth. Mom didn't mind, as
she felt Claire just needed to get some energy back and she
would (hopefully) be eating like her old self again. Mom learned
this from when Claire was sick before and not eating. It is
painstakingly slow to feed her like this, but pays off when
she gets better. Fingers crossed that Claire will get better
By 7:15, the fever started to spike up again, from 102.6 to
103.8 (102.8 under her arm) and mom put her in a tepid bath,
which she soon warmed up with her body temp, so mom had to
add a little more cool water. Eventually, it came down, mom
dressed Claire and fed her and they just layed around, as
mom cuddled with Claire.
Mom was up throughout the night with Claire and her temps.
Claire was up at 3am, crying. She was very upset. Mom gave
her some mylacon for gas and let her fuss a little bit to
see if it would work. She also checked her diapers, and sure
enough Claire was working on a BM (some details folks can
do without). So mom thought it could be constipation. She
also thought, teething. Mom offered her food, but Claire only
drank an oz, and in small amounts. She eventually settled
down around 4am.
Mom got her up in the morning for daycare. She had about 3oz
of shake, then out the door they went.
In the evening, Claire wasn't eating well. Dad was singing
and mom went to listen to his band while Claire's hospice
volunteer came over to watch the kids. They all had a big
time, but Claire wasn't in the mood for food. She was up until
about 2am, drinking very little.
Claire slept through the night. Mom woke her in the morning
for the usual, meds, diaper change and breakfast. They were
off to daycare and kids off to camp. Claire's sister had several
meltdowns today, so she will be in bed asap tonight.
gave Claire pedialyte/juice this morning as her stool is still
there, now behind her belly button (gee, guess you wanted
all the details, right?) so it has moved, and appears to really
be stool... anyway, mom was giving Claire the pedialyte and
was happy she was drinking, then Claire stopped. She pushed
the bottle out with her tongue as mom fought to keep it in...
once out, Claire proceeded to blow bubbles... her new favorite
trick.. she just wanted enough juice to be able to blow them
with, then didn't care about the juice. As mom tried to get
the bottle back in her mouth, Claire gave mom a bit smile,
the little pixie!
Claire had a banner day drinking 15 oz at daycare. Her caregiver
was very excited about her new tooth! She is finishe about
3-4 more oz now and will at least get close to her goal today.
She drank a couple more oz in the evening then went to bed
was up at 3am. She let out a fuss, and then was quiet. She
may have gone to sleep, but mom opted to feed her. She drank
3oz and was ready to go back to bed. She took about 15 minutes
In the morning, mom had to wake her early for her sleep deprivation
before her hearing test. Mom gave her a nice warm bath and
Claire drank about 3oz of shake, then off to the dr appt.
They cleaned her ears before the test, but no mention of the
ear canals looking wider. Then she had more shake, maybe 2oz
worth and mom wrapped her in a nice warm blanket and put her
socks on her. It wasn't too long before she was asleep, and
slept through the entire test... with some nice loud snores
to add to the noise the
test was showing. Because of that and other unexplained noises,
perhaps in Claire's brain, it was difficult to get any reading
on her hearing... so once again, mom is left with few answers
as to how well Claire can hear. The Audiologist noticed that
Claire's hearing aid wasn't working well, so she is going
to send it back to the 'shop'. They were going to get an ear
mold too, but neither mom, nor the audiologist remembered.
At home, Claire drank more, finishing off the 8oz she started
at her hearing test and took a nap so mom could get some work
Music Therapy came by, she has a new therapist now who she
loves and gave a few smiles to, and later her Hospice Nurse
stopped by... mentioned something about releasing her as a
Hospice patient. Guess they will decide to do that if she
continues to do well... well meaning no hospital visits or
near death experiences like last Easter... fingers crossed!
During her visit, Claire drank 4oz, then threw up one. She
gagged again and her reflexes are good that way, she just
brings it up instead of choking. Mom is giving her credit
for the whole 4oz anyway... that makes 20 oz so far today
- around 6pm. Mom is thinking Claire may reach her goal today!
nurse weighed her and she came in at a whopping 11lbs 9oz.
Mom thinks it is because she is constipated. When the nurse
was visiting, mom noticed a large lump in Claire's left side.
It appeared to be stool, and if it was, it was quite large
and hard and noticeable. The little dear. Guess she will be
having some juice tonight to help it along.
Almost forgot the big news... Claire's first tooth is CUT!!
Yep, you can see it right there on her bottom gum, front and
center... Mom is so proud, she was showing everyone at the
dr's office this morning, just after she noticed it herself!
Claire fell asleep for a while and mom took pix of the tooth.
The family went to a birthday party in the evening just after
Claire and her sibs had baths. It was a really nice party
at a local pizza/kids place and mom met some really nice people.
Claire drank a couple oz of pedialye/juice in the evening,
then off to bed. She was one tired little baire.
slept through the night. She was up at 6am, hungry. Mom gave
her meds and fixed a bottle and Claire drank 6oz of shake.
Mom cleaned her up and took her to daycare.
She drank really well at daycare, seems like she had about
12oz today. At home, she had another 4oz and in the evening,
a bath, meds and to bed by 9pm. Tomorrow she gets up early
for her ABR - hearing test. Mom really thinks her hearing
is getting so much better. This morning, when the radio alarm
clock went on, mom turned it up a little louder and Claire
woke up... coincidence? Perhaps... At Claire's last dr appt,
her ped teased that he didn't know why he always looked in
her ears, he can never see in them the canals are just too
small... habit he guessed... but her last appt, he could actually
see in her right ear... Claire is hoping to impress a few
drs tomorrow (fingers crossed!!). Mom has kept her hearing
aid out since she fusses when it is in and tries to pull it
out... makes a difficult music therapy.
slept through the night. Mom woke her up in the morning for
her usual meds and breakfast. She drank about 3oz before heading
out to daycare.
When Claire was at daycare, she only drank 10oz. Mom was a
little disappointed, but had a difficult time over the weekend
getting Claire to drink a lot too. If she could just keep
from throwing up, mom feels she would gain weight again, and
Last Friday, mom started sending shakes (mom made them before
sending them) to Claire's daycare, so she wouldn't have to
worry about consistency or flavor for Claire. Hopefully, that
will free up more time on the caregiver's part, and give Claire
some shake that is more consistent throughout the day.
When Claire got home, she drank the rest of the bottle of
3oz, and mom noticed she was still hungry, but let her hang
out with dad for about a 1/2 hour before feeding her more.
Mom then gave Claire about 2-3 oz every 40 minutes or so,
until she polished off 11 oz in the evening.
spent some of the evening with her dad as he played his guitar
for her and she hung out in her boppy with her feet on the
guitar. Dad got a lot of BIG smiles then!
Mom gave Claire meds and put her in her bassinet while she
made one more bottle to 'top her off' with, but Claire was
asleep when mom came back with the bottle. Around 10:30pm.
About 24 oz of shake for the day! Her ped said she would need
25 oz minimal, so mom is working on her.
Claire slept through the night. She was up early for breakfast
and church. Her mom fed her about 4oz during church and Dad
held her afterwards. She gagged and threw up, but dad got
away clean, and mom actually had a change of clothing for
Claire, so dad cleaned her up and waited outside church for
mass to end. Afterwards, the family went shopping for school,
Claire slept the whole time. Mom fed her a couple more oz
and pretty much decided that Claire would only get a few oz
at a time, but frequently, hoping that when she does gag (mom
thinks it is from congestion and drainage down her throat)
that she will only come up with a few oz, instead of the 4
or so she gave up during church.
At home, it was a nice quiet day for mom as she took a nap
with Claire. Claire wasn't too keen on a nap and opted to
hang out with dad and her big brother as mom continued to
sleep, about 3 hours worth... she was pretty exhausted.
In the evening, Claire drank well, tho her overall daily count
of oz was very small, she was eating continually, and, of
course, in the evening, after mom had her drink about 4-5oz,
Claire gagged and threw that up as well. One thing mom notes
about Claire... she throws up her food, but is very hungry
again, so after she is cleaned up, she starts on another bottle...
and tends to keep the second one down better.
She went to sleep around 11pm, so did mom.
Claire was up still up around 12:30am and once she had her
bottle, she slept and got up again several more times. Mom
patted her back a few times and she was content, and around
7am, mom fed her another 3 1/2oz.
It was a hectic Saturday morning, and mom woke Claire to do
some errands, she was up and around 11am was drinking another
4oz of shake and then nap, and another 4oz at 3pm... then
another nice nap.
Claire several times during the night. She had a 3oz bottle
around 1am and was up for daycare in the morning. Mom had
to wake her, change her, give her meds and run out the door,
so she had to wait to eat at her daycare. She didn't seem
like she was starving. At daycare, she had 10oz for the whole
day. It saddened mom as she was hoping to get twice that,
but mom knows that's just how it is. At home, she drank about
6oz in the evening and took her meds like the wonderful baby
that she is, and back to sleep. She was up at midnight and
dad came into the room and got her, as he was up late working
on some real estate stuff. She was congested and crying. Mom
came out to help dad a bit and after the decongestant and
mylacon, mom gave Claire some Tylenol, thinking it was teething.
That settled her down, and eventually dad brought her back
into the room, only to have her wake up 15 minutes later...
Claire was up again at 1am, and so was mom, with bottle in
hand. Claire drank 3.5oz and went back to sleep. She was up
for meds in the morning and drank only an oz or two on the
way to daycare. She had 10oz at daycare and then another 7
when she got home. After working on the laptop for a while
as Claire's tummy settled from her big dinner, mom put her
in her swing. Not much in the mood for an evening nap as something
is bugging her and she is fussy in her swing... probably just
the lack of entertainment as her big brother and sister are
out with dad.
Claire seemed to have slept through the night. Mom woke her
in the morning for meds and she drank about 5oz of revised
shake. Since she had been congested, mom opted out of the
formula for this shake, and instead made it with a little
pedialyte, but mostly fruit and barley cereal. She loved it.
After eating, mom put her back in her bassinet for a moment
while she helped get the kids off to camp. Claire fell asleep
before mom returned to get her... she was a tired Baire. Mom
is wondering how well she slept. Just because Claire doesn't
cry, doesn't mean she is sound asleep. Mom has noticed a time
or two that Claire just lays there with her eyes open - contemplating
the meaning of life, not at all sleeping, but still content
as she doesn't cry. And since it is the middle of the night,
mom usually lets her lay there and examine the darkness. Claire
hasn't show any noticable seizures in the past two days.
Claire had her dr appt today. Every three weeks now. Before
the appt, Claire drank 3oz bananas mixed with 1oz pedialyte...
but gagged and threw it up just as she was called into the
dr's office. Mom was hoping Claire could enjoy the yummy bananas
for a little longer than she did. So they went to see the
dr as Claire was covered in 'used' bananas.
She weighed in at 11lbs 1oz, a few oz less than last week.
Mom thinks it is because she sleeps through the night and
misses feedings because of it. She is considering waking her
at night, and continuing until she is a bit bigger. Claire's
dr said she needs about 25oz per day of 22cal/oz (and that
is just to maintain her weight). Waking may be the only way
to ensure she gets enough.
Claire had music therapy, and found out that her music therapist
is not going to be coming anymore, as she is going back to
school in the fall to work on her doctorate degree. Claire
will have another teacher, who is also wonderful and has been
visiting also, so she will continue with her therapy. Claire's
substitue Hospice Family Coordinator came by today.. it is
her last day too, as Claire's regular coordinator comes back
from vacation on Monday. Little Claire is able to see lots
of new faces these days. During MT, she drank 7 1/2 oz. Mom
put her in her swing to rest up for the next round of food.
She was hungry and drank more before bedtime. Mom set her
down on the bed while she was busy only to watch Claire doze
off. Mom put her in her bassinet around 11pm.
was up at 2am, and again at 5:30am. Mom gave her meds and
fed her, she drank 5oz of shake. Dad took her big brother
to the dentist, and big sister tagged along. She was off to
daycare in the morning and had a good day drinking 10oz of
shake. Mom set up two evals for Claire, one for PT (physical
therapy) and one for OT (occupational therapy) for the middle
of August. She also set up an appt for her hearing at the
beginning of August. At Claire's last Music Therapy, she was
tugging at her hearing aid and messing with it. Mom is hoping
that is a sign that her hearing is much better (due to her
increase in size and the possiblity of her ear canals opening
up -- as mom has heard happens to triers like Claire). She
will have an eye appointment at the end October, but that
has to be set up less than two months in advance.
When she got home, mom offered her more, but she was a little
too congested, so mom gave her decongestant and saline nose
drops, and Claire fell asleep.
She was up a little later in the evening and drank 3oz of
shake, but appeared lethargic and not sucking really well
on her bottle. Mom changed her diaper and gave her her meds
after her bottle and put her back to bed. Mom put her O2 canula
on her to help her rest a little better tonight. She was in
bed around 10:30pm.
was up most of the night. Dad was up much of it with her,
and she had a low-grade fever off and on. It was so slight,
running about 99-100, that mom didn't give her anything and
she seemed to overcome it herself.
In the morning, it was meds and off to daycare as usual. Dad
slept in as mom got the kids ready and took them to camp too.
Claire's caregiver believes Claire had a seizure early in
the morning. Mom is going to give Claire one dosage from the
'used' bottle to every two dosages from the 'new' bottle of
anti-seizure meds. Mom has many theories about everything...
she's funny that way.. and she will keep everyone informed
on how this one pans out. When the bottles aren't shaken,
she can see a difference in the ratio of the different levels
of ingredients between bottles, but when shaken and measured,
they looks similar.
In the evening, Claire was warm again, but her temp didn't
see high enough to warrant Tylenol. She had a bath and looked
a little constipated as mom changed her diaper. Mom gave her
a suppository and some juice before bed and put her O2 nasal
canula on her so she could sleep a little better. Claire went
to bed around 10pm, but woke up frequently with a single pitiful
Claire was up for church after sleeping most of the night.
Her aunt enjoyed holding her during mass as Claire gave up
many smiles, and some food. She had a seizure and then gagged
a little, and her aunt gave her back to her mom. It was the
first seizure she'd had in a while. After the seizure, she
threw up (mom caught it all in a bib) and she seemed to feel
much better. She had a nice nap along with her mom and sister
and brother, and then off to her uncle's home for swimming
and dinner. Claire didn't swim today, but enjoyed the attention
from everyone. She did throw up on her dad during the evening...
he came away clean tho. The family got home late in the evening
and everyone was so tired.
Mom is thinking, once again, that the anti-seizure meds are
getting low, and that the consistency of the med changes.
She shakes the bottle as much as possible, but still thinks
the first dosage is always stronger than the last one. So
she is digging into her 'standy-by' new bottle of perfect
consistency med for every other dosage to help keep the med
levels up, but not waste the old bottle... and see if that
Claire slept well last night and so did mom!
Today they went to Claire's uncle's house to swim, and even
Claire had some quality pool time with her fun uncle. He enjoys
her so much. Dad had work to do, so he missed the amazing
feats of Claire's sister... she just decided she wanted to
swim, and not only put her head underwater, but was jumping
in the water and swimming under the water all the way to the
edge of the pool! Mom was blown away with happiness.
Claire slept well last night and hardly snored at all. She
was up for her bottle and meds and mom gave her a bath, as
she missed her bath last night. After 6 oz of shake and a
little 'mommie and me' time, she was off to daycare. Mom didn't
get too many smiles this morning; guess Claire doesn't want
to spoil her.
slept through the night. Mom has been very pleased. She was
up early for daycare. Her caregiver ran out of baby food,
so mom suggested just blending up a banana for her with a
little formula for a nice consistency. Claire loved it.
After work, mom took the older kids home, they took baths
and mom picked up some dinner, then off to Claire's daycare
so mom and dad could go out to dinner with friends. They ended
up being out later than planned, and everyone got to bed very
late, including Miss Claire, who finished off her bottle around
midnight and went right to sleep. She had over 23oz of shake
during the day.
slept through the night. Mom had her up for meds early as
usual and Claire went back to sleep after breakfast. Her sister
had a dentist appt, so Claire had her teeth looked at again,
same decision, nothing yet, but those elusive teeth are on
the verge of showing themselves. Mom almost wonders if they
will all come in at once... that could be good, or bad.
Later, mom got a lot of work done and Claire enjoyed her swing.
Hospice came by and weighed her, but she was only at 11lbs
5.5oz. Not up very much, and considering how much she has
been eating, well, she must be burning a whole lot of calories
too. Mom is going to continue with what she's doing, and hopefully
Claire will continue to gain. After
hospice, Claire had her music therapy, which she loves, and
then off to pick up the kids at summer camp. Everyone had
a nice lazy evening.
Big brother got a couple more books for his summer reading
requirement. He hasn't enjoyed any of the books he's picked
out so far, so mom and dad keep hitting the library, brother
in tow, to find something he wants to finish. Mom thinks she
has found them... summertime is running out for him! Big sister
is in her own little world of Barbie dolls, dress up and loving
to watch Disney movies. Dad was out of town most of the day.
In the evening, Claire was visited by a hospice volunteer
who wants to watch Claire. She was a very sweet woman who
is a labor and delivery nurse at the hospital where Claire
was born... but didn't deliver Claire. Claire really adored
her. She fed Claire until Claire was about ready to pop!
wanted to sleep in, but mom was on a mission to feed her until
she popped. Well, a figure of speech anyway. Claire drank
5oz of shake and had a change of clothes and diaper before
she opted to go back to sleep with her daddy. Mom noticed
she was waking up a little when mom was leaving and tho dad
had opted to take the kids to camp this morning, mom told
him that she would take Claire in to daycare. Mom picked up
Claire and Claire smiled a mile wide. Mom was loving those
big gummy smiles!
She came home from daycare and drank 5oz of shake, then hung
out in her swing watching Nickelodeon until bath and dinnertime.
More smiles then!
Clicking on this picture will give you a bigger one. Mom really
feels like Claire's smiles mean that she is happy to be part
of her family and finally starting to interact with everyone
around her even more. At this point, it is more than mom could
ask for... but she will keep asking for more all the same.
This morning was business as usual. Waking Claire for meds
and breakfast, then off to daycare and kids off to camp. Claire
seemed to have a good day, tho she only drank 7oz for the
day. When mom picked her up, Claire was snoozin', so mom gently
moved her to carseat, took her home, moved her to her bassinet
and let the peanut sleep. Mom took a short nap too, while
dad was picking up kids from camp.
Claire was up for a bit to drink 8oz of shake, take a bath,
and then another 4oz of shake and back to sleep for the night
Claire slept through the night and woke up at 5:30am for meds
The family met up at church and then again afterwards for
lunch at Claire's uncle's home. Everyone was very pleased
with how well Claire did and how easy she has become to care
for (knock on wood that it continues!!).
Mom was especially pleased and noticed even more gummy grins
than before... esp when mom kissed Claire behind the ear...
as if she really meant it, and she really did!! Mom took pix
of the grins and hopes to post them soon. Something to really
look forward to!
In the evening, mom fed Claire 16 oz from 3pm to bedtime,
around 9pm. But Claire was up again at 11pm and dad came to
get her so mom could sleep. She didn't eat much, but seemed
content enough to go back to sleep for the rest of the night.
slept through the night. And mom woke up to get the kids ready
for the evening at their uncle's home. Claire's big brother
stayed the night last night and will stay again tonight. Claire's
little sister was being a mommy's girl, and opted to come
home with mom last night, but was up eating breakfast and
ready to go out to play with her uncle this morning.
The kids seemed to have a fun day, while Claire and all her
stuff went over to start her weekend around noon. She was
given a bath as soon as she got there and enjoyed 8oz of shake
every 4 hours. She was at 'Club Auntie' all weekend and really
enjoying the attention, being held all the time and catered
to with every whimper. In return, she gave her aunt many gummy
Mom and dad came by to get the older kids for a pool party,
as friends were moving and it would be the last opportunity
to see them, and the kids had fun. The were returned to their
uncle's home around 11pm, only to find Claire already asleep
in her auntie's arms. Claire had been bathed and fattened
up for bed. Her aunt was cuddling with her and expecting a
long night of being awake with her. The two of them hung out
in the tv room and got comfortable, settling in for a expectedly
long night. Claire's aunt requested mom bring a shirt over
that she(mom) had worn for that lovely mommy-scent hoping
it would help Claire sleep more comfortably if she smelled
her mom all night. She put that down with Claire as they settled
Claire slept through the night. Mom woke her at 6pm for her
breakfast (4 oz of shake) and meds. She went back to sleep
on mom's bed with her daddy as mom showered and got the kids
ready for camp.
At at her daycare, she's been bright-eyed all day and watching
her caregiver everywhere she goes.
In the evening, Claire went to visit her uncle and aunt as
her other aunt and uncle arrived for their Claire Weekend.
It was a really nice evening as the family hung out and ate
Mexican food and Claire's aunt started getting the 'run down'
of the 'Care and Feeding of Claire'. Should be a fun weekend
as Claire will really enjoy the attention!
Claire slept through the night. She didn't make a peep all
night until about 5:30am when she started fussing for her
bottle. And mom was happy to make it for her.
She drank 4oz and was off to daycare. She drank 14 oz at daycare.
In the evening, she was smiling, almost on demand. Mom was
kissing her behind the ear, and touching noses with Claire's
and she really enjoyed it. The kids were saying her name as
she was in her bath last night and she was grinning then too.
It can really melt your heart! She drank 8 oz of shake and
had her meds before falling asleep around 9pm.
Claire slept through the night. Mom woke her for meds and
breakfast, she drank 6oz of shake, had a bath and went to
sleep so mom could get lots of work done.
is expecting Hospice and Music Therapy today. She is also
still working on getting Claire back into Physical Therapy,
but not having much luck achieving that anytime real soon.
Wish her luck, as Claire has been without physical or occupational
therapy for about a month now.
She drank another 4oz of shake just after noon and started
some juice and pedialyte which she finished during Music Therapy
The hospice family service coordinator came out at 1pm. She
is new and filling in for the regular coordinator, and she
really enjoyed her time with Claire. Music Therapy is expected
at 3pm and the Hospice nurse said she would come out at 5pm
to weigh Claire, as that is about the best way there is to
measure how well she is doing these days.
The nurse came and Claire weighed in at 11lbs,
3 1/5 oz! That is up over 13oz since Friday! During the visit
Claire was working on another 6oz. bottle.
Claire has become quite the social gal. As mom was working,
Claire started fussing. Mom came out to see what she needed
and Claire took one look at her and stopped fussing and started
looking around. Mom left the room only to have Claire start
fussing again. Claire was lonely and just wanted the company
is all mom could find wrong with her.
In the evening, mom fixed more for Claire to eat, but after
about 2oz, she wasn't too interested and dad was trying to
feed her. Next thing mom knew, dad was saying, 'she's asleep',
so he put her to bed at 9pm. Mom had just given her meds shortly
was at daycare today after her dentist appointment. Mom had
an appt and took Claire along. In the waiting room, the receptionist
caught site of Claire and came to see her. She couldn't tell
mom enough how beautiful her baby was and how lucky she was
to have such a sweet, beautiful baby. Mom was very proud,
but didn't let on about Claire's trisomy condition. Instead,
she just enjoyed the moment, because for just a short time,
mom felt like she had a 'typical', healthy baby.
Mom discussed Claire's condition with the dentist (and how
triers are prone to cleft palates -- which leave no teeth
in parts of the mouth where the palate is missing), but said
that other trisomy babies had teeth 'on time' and Claire was
way overdue, as she still doesn't have any and she is 16 months
old. The dentist said Claire could get xrays, but that she
didn't need the added radiation, and mom agreed, so the dentist
put on her gloves and felt around Claire's mouth. Claire was
okay with it, as mom does it all the time, feeling for teeth.
The dentist said that her gums felt fine and that she had
'ridges' for good teeth development. She even said that Claire's
front top gums showed signs of new tooth buds, as if she could
get them anytime. Mom was pretty excited!
Claire drank about 3oz for breakfast, then another 11 at daycare.
In the evening, she finished off 3oz of juice and pedialyte,
then drank 5oz of shake. She had a good day.
In the evening, mom put her down to sleep, but she was fussy,
so dad came to get her from her bassinet and let mom get some
rest. She didn't drink anymore for him tho.
had a nice weekend. She averaged 23 oz each day and seemed
to be her old self. Mom didn't notice any seizures over the
weekend. She was up bright and early and dad got up with her,
changed her diaper, fixed her some breakfast and noticed she
only drank a couple oz. When mom got up, she got a few more
oz down Claire and got ready for work. She dropped the kids
off to start their day as big brother has a field trip, big
sister is learning about bears and Claire is talking up a
blue streak to her caregiver. Mom washed her hair this morning
and Claire stuck her hand up in mom's face for about 2 minutes
during the washing... mom told dad to look at Claire and he
laughed... hand right over mom's mouth, he thought only Claire
could get away with doing that!
In the evening, Dad had a friend over who enjoys holding Claire.
He was holding her and getting the biggest smiles that mom
and dad have ever seen from Claire. Dad took pictures as they
were working on those smiles long after mom went to bed.
was awakened to get ready for church, she had a nice easy
day with her family. She drank 5oz when she woke up and mom
was going to feed her some juice in church, but Claire seemed
content. When they got home, she'd fallen asleep. At church,
the nurse in Claire's dr's office was in the row in front
of the family, so she offered to hold Claire for a little
while. They seemed to enjoy their time together as she talked
to Claire and Claire stared at her as if to say, 'Helloooo!!
I don't speak English yet'... hehehehe. That Claire is a real
card... her look was obvious.
In the afternoon, Claire had a good nap, finished 5oz of pedialyte
and juice and a couple more of formula.
Brother and sister had friends over spending the night last
night, and they were busy outside. Mom sent them outside,
as they were running around in the house playing hide-and-seek.
and once they got outside, they opted to sit and play cards
on the porch. too funny. Mom went blueberry picking with a
friend and Claire's brother and sister both took naps, while
their daddy was at home watching the kids and talking with
an old friend of his.
In the evening she drank very well and went right to sleep.
After she was sleeping for a few minutes, mom slipped the
canula on her (for oxygen) and everyone rested through the