Journal -- 27th Month
was a busy day, kids were off with the sitter having big fun,
and mom and dad were off to work. In the evening, friends
came over and brought chicken fingers from Zaxby's, mom's
latest favorite wing place. It was fun hanging out with friends
and the kids were out in the yard trying to catch fireflies
and playing games. Evidently, they were using a watch for
one of the games, and mom was listening to them play and heard,
'Time out, the watch is broken'. She giggled and commented
that she thought there was a pun in there somewhere. Big storm
Arlene is going to the west of Claire's house, and coincidentally
one of the friends visiting tonight was Arlene, so they had
fun with that name all night. Tomorrow is expected to be rainy
and windy. Should be a nice day for staying inside.
had a good night. She was up early.
Mom got up early to get her breakfast ready and Claire was
hungry. She ate about 3oz of cereal and still seemed hungry,
but she fell asleep on her way to daycare.
had a good night and a good day.
Mom started her off with fluids as her diaper was dry in the
morning. Then Claire played with her big brother and then
she fell asleep until just before PT and OT. Mom fixed a bottle,
woke her and fed her some shake... then off to therapy.
Claire's new chaire arrived today. It is a Bumbo.
It is cute and light (like Claire). Mom took the Bumbo to
Claire's therapy where her therapist tried her out and noticed
the head support wasn't there for her, but mom felt her head
support was nearly good enough, and she would only use the
Bumbo under supervision. Claire's head support has come a
long way and all during OT she kept her head straight and
everyone was very impressed (guess she knows she needs to
do that to use her new chaire).
Claire ate more when they got home and the hospice ladies
came by to celebrate Claire's graduation. They brought balloons
and gifts and knew that this was a great time in Claire's
life. It was joyous and sad at the same time, as closing any
chapter is. They each took time to hold Claire and play with
her, they are truly special women and mom is proud to have
had them in the family's lives.
Thank you so very much Hospice for all that you have done
for Claire and her family!!
slept through the night. Mom got a good night of sleep.
Mom noticed Claire moving around this morning. Claire had
her eyes still closed, not too sure if she wanted to wake
up or not. Mom called her name a few times and spoke to her,
Claire eventually lifted herself up on one arm (tummy down)
and worked hard to open her eyes. Mom picked her up and got
many smiles! Claire layed in bed with dad sleeping by her
for a while while mom got showered, dressed and got Claire's
Claire ate about 3-4 oz of cereal by spoon, then off to her
bath... she needed a good soaking this morning. After bath,
she fell asleep in her carseat waiting for mom to get her
diaper bag ready and get out the door this morning.
Mom got a call from Claire's hospice nurse this afternoon.
Evidently she heard that Claire had already been discharged
from hospice by Claire's insurance... and that it all took
place on May 25th. Claire's family service coordinator didn't
know about it and Claire's dr didn't know either. Mom called
their healthplan, and spoke with a woman she had previously
spoken with. The previous conversation determined that Mom
would need to speak more with Claire's dr and hopefully have
a plan in place... the woman said it wouldn't happen soon
and that mom should think about it a little more.
Evidently, when mom called the healthplan today, the woman
insisted that the previous discussion confirmed that Claire
would be discharged from hospice without further notice. Sounds
like two completely different conversations. Mom was very
displeased that she was not consulted further on the discharge;
there was no plan in place for how oxygen, medication, etc
would be handled -- things that hospice took care of for Claire,
and certainly no date was discussed. And now it was revealed
in hindsight. Hospice and Claire's dr did not seemed pleased
with how the healthplan handled this either.
Mom has mixed feelings about Claire's discharge, and tho she
will miss the hospice family very much, she is happy for Claire
and the family and drs will get on with helping her future
rather than worrying about it. Not to put a wet towel on this
CLAIRE IS A HOSPICE GRADUATE! !
Not too many people can say that! Gooo Grrrl!!!
slept through the night for the most part.
She had a fun day at daycare with a break for PT. She stood
a little(assisted) for her PT and got a good bunch of stretches
in. Later in the evening, mom was holding Claire while working
on the computer. Claire fell asleep in mom's arms as mom worked
and dad came into the study with a really good story that
started with a big clap of his hands... at that clap, Claire
JUMPED! Coincidence? Guess it's possible.
Mom almost started crying... She can Hear!!! No hearing aid.
Mom felt all along that around 2 her hearing would be much
improved as she'd heard stories of other triers ears opening
up around then, enough for them to pull off their aids. Guess
mom needs to set up another hearing test to see what's going
on now. Mom and Claire got to bed before 10pm, but not bath
for Claire and not bottles made.. mom was just too tired.
had a good night.
Dad called early this morning from Chicago, his flight was
coming in earlier than expected so mom cleaned up the kids
and off they went to the airport to get him. Afterwards, the
family went out to lunch and home for much needed bonding
had a good night.
Dad called frequently to check on everyone and it was a lazy
day. Mom took the kids into work in the morning as she had
some files to move and check. Afterwards, it looked like rain
and time for a nap for Claire's big sister. She didn't really
nap, mostly just layed in bed asking every 5 minutes if it
was time to get up yet. Mom got more work done and some play
time. The kids were well behaved and Claire ate pretty well,
tho not as well as she had been.
The family went to mass this evening as they will pick dad
up from the airport tomorrow morning. Everyone was in bed
early except Claire's big brother who stayed up to watch the
College World Series baseball as FSU played Auburn... hey,
it was Saturday night.
slept through the night for the most part.
Mom woke her up in the morning, but in a fairly big hurry
to get to work, so Claire only drank a small part of her bottle
and was swept out the door after meds and clothes/diaper change
and face washing.
didn't sleep through the night. She needed a 1am bottle and
drank 2-3 oz of shake and went back to sleep. She had a really
She was up early and had 4-5 oz of cereal before heading out
the door. At daycare, she had another 14oz including 4oz of
cereal at lunch.
Dad left today to go to Michigan for his niece's high school
graduation. He went with is brother and they will likely spend
time in Chicago at his brother's fiance's sister's home (get
In the evening Claire had an early dinner(4 more oz of cereal)
after finishing up another 2-3 oz of shake. Everyone was in
bed at a reasonable time. Claire was talking most of the evening,
wishing for some attention and usually got it, as she was
Mom got a call in the evening from a foundation that grants
wishes for termally ill or disabled children. It was an odd
phone call, not odd that they were asking for money, but that
they were offended when mom wanted to check out the organization
before pledging any money to them. The conversation ended
with mom telling them she wanted, at the least, to get the
website address, and the woman on the other end (who didn't
let mom get in the conversation once) told her the website
and essentially hung up. This was not any org mom had ever
heard of... NOT "Make a Wish", but they sounded
close enough that folks may think they were Make a Wish...
mom noted that the phone number was from a marketing company,
and not from any childs-wish making company. And they have
no idea that about mom's special baby, with all her little
problems. Once the woman heard Claire talking she said, 'I
hope you never need us'... and kept going on... mom didn't/couldn't
say anything to her. She obviously lives in another world
Mom did get to talk to Ryan's mom for a good while over the
Internet (for free) so that was big fun. Sharing pictures
and learning about family. Ryan's mom even got to see Claire
sitting and falling asleep. (video was set up too).
had a terrific PT and OT session. Dad took her and raved about
what a great time they had!
No word from Claire's nurse to see if she is coming by. Claire's
MT called, but mom was unable to return her call before 5pm
and knew she wouldn't be in the office then. Mom was able
to tie up a lot of loose ends at work (from home) and go to
an awards luncheon. It was the second year mom received a
productivity award. Everyone had a nice quiet evening at home
and mom and kids were in bed early while dad was up a little
late. Pizza night tends to mean early bedtimes... no dishes
had a nice day.
Everyone back to work today, and the kids have a sitter who
will come to watch them over the summer. They seem pretty
excited about that, and randomly have friends over to break
up the days. Also they will have some weeks at summer camp,
but for the most part, everyone is just trying to set up a
routine for the summer after a gorgeous and fun weekend at
Claire was at daycare, and mom picked her up after work and
when they got home, the kids and sitter were under a table
surrounded by blankets and pillows playing monopoly... very
kewl. Claire's sister was trying to learn about money, and
buying the properties her older brother needed for houses.
had a good day.
She was up early (sunrise -- around 6am) and eating... mom
was a little too tired to make cereal so she heated a shake
and Claire drank 3oz and went back to sleep. Mom was up by
then, tho she tried to go back to sleep, hotel rooms with
an awake 5yo means little or no sleep... even with a pillow
over your head.
The family packed up the truckster and headed back home after
an exhausting weekend. Mom had a terrible headache (which
she very rarely gets - even any headaches), so she took an
asprin/decongestant and went to bed... and woke up 3 hours
later. Claire slept for much of that time too and so did Claire's
sister. The fun and sun can really take a lot out of everyone!
In the evening, mom started cleaning some and getting ready
for the work week.
had a terrific weekend.
She had two meals a day by spoon and in the mornings ate as
much as 6oz of cereal in one sitting.
She spent her days on the beach under an umbrella, waking
around 6am and getting on the beach after sunrise and after
a big breakfast. Mom brought down pedialyte to keep her fluids
up and for Claire to nibble on during the day. Just before
noon on Sat and Sun, Claire would go up for lunch and a nap,
along with her sister. Around 3pm, everyone was up, slathered
with sunscreen and ready to hit the water.
In the evenings everyone gathered for dinner and hung out.
Mom and the kids went to bed rather early, as they would likely
be up early in the morning again. Everyone was exhausted,
even Claire's big brother layed down, and no one asked him
to go to bed.
were up early and ready for their weekend at the beach.
Dad had plenty of loose ends to tie up, so the ETD of 9am
was moved back and back until 3pm, when everyone finally got
out of town. It was a gorgeous night and everyone really enjoyed
lounging int he cool fresh air. Mom had on a sweatshirt, and
Claire a small blanket to keep her warm. Everyone got to bed
pretty late. Claire was up twice during the night, so rest
was elusive for mom. A nap tomorrow would take care of that,
and a good night sleep (hopefully) tomorrow night.
didn't quite sleep through the night... once again she was
up around 1am... didn't seem hungry so much as her teething
seemed to bother her... after mylacon, mom gave her some advil
and eventually she settled down and went back to sleep. She
made random wimpers throughout the night, but every time mom
checked on her, she was asleep.
She was up nice and early, hungry and letting everyone know.
Mom fed her about 4oz of cereal after her meds and then Claire
Mom was able to get a lot of work done in the morning and
then off to PT and OT where Claire had a good therapy... she
is getting better at sitting up and working on her standing.
Even her PT sounded more like she was going to start getting
more aggressive working on getting Claire a stander. OT was
good too, no great strides, just a lot of hard work for Claire.
Claire ate in the afternoon and the hospice family coordinator
paid her a visit. Much of the talk was about Claire graduating
from hospice. Claire's big sister had a gymnastics/dance recital
soon after hospice left so Claire, mom and Claire's sis were
out the door to meet dad and Claire's brother for the recital.
It was quite amusing. Mom of course has most of it on video.
Dad had to go back and get some work done and then brought
home pizza... pizza night you know. Claire fell asleep during
slept through the night. She had a good night.
Mom had her up early and her hospice nurse came by to check
on her to give her approval for daycare. She said Claire sounded
much improved, tho still a little gunky. Keep her on antib's
until they run out and keep with the nebulizer and decongestants.
Claire had a good day at daycare drinking 14oz after eating
about 5oz of cereal in the morning and then going to sleep
because mom took too long to get ready to go.
Mom picked Claire up after work and everyone got home in time
for dad to decide the family should go out for dinner. Mom
was all for that. Claire ate really well when they got home
(after sleeping through dinner) and she was ready for bed...
or so mom thought. After being in bed long enough for mom
to get relaxed, Claire decided to get up... But eventually
she settled herself down. Had had been out getting some stuff
from the office and once he got home, he came in and took
Claire out with him to see if she wanted more food, or just
cuddling. He returned her shortly afterwards as cuddling was
likely enough for her.
didn't quite sleep through the night. She was up again at
1am, hungry... she drank 4oz in 12 minutes and went back to
bed and quickly back to sleep. Just needed that post-midnight
snack. She hasn't had a fever in a few days tho she still
sounds congested and has been sleeping a lot. She slept in
and mom woke her late for meds. Dad was staying home with
Claire's sister who is off all week (since the 'grader' has
graduated from Kindergarten, she's out of school early for
the summer -- not something mom agrees with).
Mom fed her a bottle and was off to work while dad was getting
home from delivering Claire's brother to school this morning.
Dad had errands to run at lunchtime, so mom was back home
watching the girls for a bit while he got 'out' and then he
was back home so mom could get back to work.
Claire has PT tonight so they will regroup and determine who
needs to be where in order to pick up brother and get Claire
to PT and watch Claire's sister. Life is good.
The family had a nice evening and when the day was done, Claire
had 35oz of food (combination of shakes, pedialyte and cereal).
slept through the night. She was up for church and well behaved
for most of mass, especially since she fell asleep before
the half-way mark and the tired little peanut also slept most
of the afternoon once she got home. Dad had an open house
and mom made cookies for him and got him out the door.
Mom took advantage of Claire's nap and got Claire's sis to
take a nap and then took one herself. Mom seemed to be trying
to get a cold, so she was willing to sneak in any sleep anytime
Later in the day, everyone lounged around the house. Dad made
dinner and mom fed Claire more and more... as if she were
going to pop!
was in bed by 9am so mom could watch Desperate Housewives...
but Claire wanted to watch too, and she was up for most of
it, eating. She was back to sleep by 9:30 and up again at
11pm. Her daddy came to get her as he was up working... and
then put her back to bed soon afterwards.
was up at 4am and drank 4oz of shake. The little peanut was
very hungry and she's been drinking rather quickly when she's
hungry like that, so mom was back in bed in about 20 minutes.
The antibiotic seemed to kick in as Claire's throwing up and
fevers seem to be subsiding. Yeah!
slept through the night. Mom was up a few times checking on
her to be sure she didn't have a fever and be sure her cannula
was in her nose. She sounded congested so first thing in the
morning mom gave her meds and then a decongestant (along with
her antibiotic and some advil to keep that darn fever away)...
so she was pretty full by the time her bottle made it to her
mouth (hehehe). She drank 5 1/2 oz.
been so hungry today.
She ventured out to her big sisters 'step up' from kindergarten
to first grade and her last day of school. It was fairly quick
and then she was back home with sis and dad for the rest of
the day. Mom was off to work.
By 5pm, Claire had over 22oz of pedialyte mixed with banana/rice
cereal. There's calories in that but no milk so that should
help with her congestion. Her color is very nice today and
she was talking up a streak with her grandma on the phone
tonight (just like her mom).
was up most of the night throwing up and trying to get her
temp down. Mom was up with her... cleaning up and wringing
out wet washcloths... probably NOT teeth.
They were up from about 2am until after 5am, when Claire still
had a little fever, but it was down considerably from the
102 (under arm so you add one more degree).
Dad kindly let mom sleep in and took her car up to get worked
on, then he went and paid Claire's daycare for the week, tho
she likely won't be back there this week. He picked up her
antibiotics on the way home, and mom didn't ask him to do
any of that (except the daycare check)... he's so sweet!
Mom gave Claire a dose of the antibiotic, once a day. The
dr kindly ordered Claire the zithromax that seems to work
so well for her, and it's been a while since she's been put
on it, so that is good too!
Claire was still throwing up and had a fever just before mom
had to leave the house for the school for a teacher reception
that she had worked so hard to help organize. Claire did fall
asleep just before mom left and she drank about 4 oz (not
too sure how much was kept down) of pedialyte mixed with rice/banana
cereal. The reception ran like clockwork and mom was very
pleased and went home to check on Claire once more before
going to work. Claire seemed to have broken her fever -- yeah
-- for now. She is still laboring in her breathing and still
on the O2 machine to help her out but she seems very hungry!
In about 5 minutes she drank nearly 2oz. Mom started her on
another bottle when she got home as Claire was nice and cool
and awake. Dad took over so mom could get back to her busy
had a mild fever late in the morning - probably still teeth
as she has a new one halfway between her front teeth and her
back gums, and MT came by to sing to her. She was cool after
a while and mom decided she could go to PT as long as they
worked her lightly. She did a lot of stretching, since she
was wiped out, and her PT was happy to see her relaxed for
her work out. Her OT appt was evidently cancelled and mom
wasn't informed... life in the big time! Claire had fallen
asleep anyway, so mom let her sleep a bit and got caught up
on calls before heading home. Claire continued to sleep and
mom got some work done and was relieved by dad as mom had
an afternoon meeting to go to for work. While mom was in the
meeting, the hospice nurse came to visit Claire. She recommended
putting Claire on O2 and said her lungs sounded congested.
She spoke with the dr's office who called in an antibiotic
so if Claire continually got worse, she'd have something mom
could just pick up over the weekend.
Pizza night and Claire spent much of it throwing up her shake
on her mom. Mom thought she should rethink what Claire was
drinking if she was going to be wearing it so often -- she
opted for Claire to get pedialyte with banana/rice cereal.
At one point, mom called dad to ask for a little 'help' but
realized there was little he could do for her, besides getting
Claire's bath ready. The temp was at 101.5 before the thermometer
came out from under her arm as she was spewing. The throw
up was so hot mom could feel it on her legs almost burning.
She new it was time for another bath.Mom had Claire on a towel
on her lap, but Claire not only hit the towel but made a mess
of mom too, so mom put her on the floor, took a shower and
when she got out took her messy little peanut (who dad monitored
as she may still have some left in there to come out) and
got Claire cleaned up. Meanwhile dad was changing sheets and
duvet covers. It was a hectic night and mom was only happy
that her work was done for the teacher retirement reception
in the morning at Claire's brother's school... his teacher
is retiring this year and everyone is more than sad to see
her go. snif.
Claire and mom finallly went to bed around midnight. Shortly
before, mom had given Claire tylenol and then motrin when
the tylenol didn't kick in for her Claire's fever. She was
just way too hot for way too long... it was scary for mom,
even the bath didn't bring it down enough to keep it down
for mom's peace of mind.
slept through the night. She had a good day and her fever
seemed to have disappeared. Mom is glad, must have been teeth.
They will keep an eye on her temp and if she doesn't have
one all morning, dad will be taking her into daycare. Mom
has a quick errand to run at the kids school this morning
and then she will be off to work.
Claire had a great day at daycare. She drank 7oz, but hadn't
been there the whole day so it was an okay amount for her.
She ate pretty well in the evening and in bed by around 9:30.
Mom was up a little later tho, working on cookies for Claire's
brother's class to celebrate his teacher's proclaimed day
as she is retiring. They call her Mrs. A, so mom made cookies
out of her letter A cookie cutter... and was up past 10:30
doing that, then up later cleaning up... in bed by midnight.
slept through the night. Mom was pleased as she seems to be
doing well (knock on wood). She had her usual day of going
to daycare and spending the evening at home with family. A
friend came by for dinner that was a nice time for everyone!
Dad had two closings today, so a celebration was in order.
slept through the night. She had a fun day, first going to
church with the family and being a good quiet baby during
mass. Afterwards, she played in her chaire and drank pretty
well throughout the day. Dad kept an extra eye on her all
day as mom was working on a present for Claire's brother's
teacher who is retiring. Claire had a nice evening and was
in bed fairly early.
had a good night and mom is so proud of the all the strides
she's been making. Haven gotten out of the winter months,
Claire is in a 'good place'. Mom spent much of the day working
on a project and Claire just kicked back and enjoyed the day.
Dad's band sang in a wedding tonight, so he's out and about
doing his wedding singer thing (oh he'd hate that we put that
down in writing! -- especially since his band really doesn't
slept through the night. Mom quickly got her ready as they
had to be out early in the morning. Mom is helping with the
DARE graduation this morning (Drug Abuse Resistance Education)
and so Claire will arrive at daycare extra early. Then mom
back to work.
Claire was home to meet her hospice nurse for her bi-weekely
checkup. She weighed in at 15 POUNDS
!!! That's nearlly a pound that she'd gained in the past 2
weeks!! Mom is very proud1!
slept through the night. Mom woke her for her meds, bath and
bottle. She slurped down 4 oz and was ready for more. Mom
took her to daycare and she was all smiles along the way with
milk coming out of her mouth (hard to keep it in when you
are smiling so big). Claire was in such a good mood this morning
and happy to be going to her daycare.
Claire did great at daycare drinking 14 oz and having another
6-7 at home. She had her meds and went right to sleep tonight.
A fairly uneventful night (esp compared to last night) and
we love uneventful too!
Dad's band played tonight, so mom had a quiet evening with
dad gone and the kids in bed (translation - mom in bed early!).
slept through the night like again, and had another banner
day. She was eating so well, mom lost count, but subtracted
the number of bottles Claire went through and figured she
had at least 3 8-oz bottles during the day.
She had a great PT workout and was both tired and hungry,
which worked out well since she had OT afterwards and she
worked on eating. Claire zoned out a few times, just from
being tired... tho she had a great early nap in the morning,
she is still trying to recover from the big weekend.
She had music therapy come by too, and that was neat. The
kids got a little music lesson too, as they had half day and
were home. MT brought by a chaplain who wanted to visit too,
he was pretty neat. After MT, mom ordered pizza and dad got
ready for band practice. His band will play tomorrow night
for a store opening in town. Claire was ready for bed, but
still a little fussy so mom held her until she was very tired
and finally went to sleep in her bed. Everyone seemed a little
grumpy tonight, so an early bedtime was in order.