Journal -- 24rd Month
slept through the night... and she was in bed by 9:30pm...
She was up for meds and off to daycare very early. She was
hungry this morning and mom was glad to see it.
This is Claire's first day off antib's since Feb 9th, so mom
is really hoping she will learn it is no longer winter and
she can stay healthy for a long while!
Claire's early birthday gift from her webmaster is a Guest
Book. If you want to send her birthday wishes, or just a note
of any kind, please feel free.
If you want to come by and wish Claire
a happy birthday in person, the family will be having a 'happy
hour' on Saturday evening at 6pm. Children are welcome, gifts
are not necessary.
Please RSVP if you wish to
Claire ate very well at daycare and came home to eat
even more. Mom will give her cereal and bananas tonight by
spoon, as she wants to be sure Claire is full before bedtime.
Claire had her yummy cereal tonight for dinner - by spoon
- and ate a lot - maybe 4 oz, followed up by some formula
with pedialyte in it for flavor (that's the unflavored pedialyte,
now with a new improved flavor - says so on the bottle - added
to the formula for a better flavor -- way too funny!)
After making a nice mess at dinnertime, Claire had a nice
long warm bath and was off to bed after drinking a bit more
formula... around 9:30pm.
slept through the night. Mom was pleased.
She was up early for meds, breakfast and a bath and dad took
her to her dr appt as mom had a meeting at work. After the
dr appt, she went to daycare until mom could pick her up.
Claire has appts this afternoon with Music Therapy and Hospice.
didn't sleep really great, but did sleep pretty much through
the night. Mom woke her early for breakfast and a bath as
she has Physical Therapy today. Dad took her to therapy and
she had a therapist she used to see at her home, and is seeing
this month as her regular therapist is on vacation for much
of the month (a well deserved one too).
Claire had a good day at daycare following her therapy and
mom picked up the kids for their dental appts (no cavities
and big kudos on great care given to their teeth!), then she
picked up Claire from daycare.
Dad fixed dinner for everyone, smothered chicken with corn
and noodles... most delicious. He and mom commented on how
nice it was to have a home cooked meal, as it has been a while.
There's been a lot of pizza flying around here lately...
Claire went to bed after her meds and bottle, but not too
happy and couldn't seem to settle down. She and mom were in
bed by 9:30pm, but with random cries, mom gave her some mylcon
for gas. Eventually, she settled down and fell asleep, around
10:30 or 11pm.
had a good night. She slept in her bassinet with her mattress
propped a little higher so she could 'drain' a bit. She woke
up clean and spry.
She still has her head cold, and mom gave her some decongestant,
along with med and antib, so she was almost full by the time
breakfast came. Little Dear.
Claire will be 2 years old this week!! P-A-R-T-Y T-I-M-E !
Claire's been getting the run around on her meds lately --
so what's new? hehehe!
Her health plan approved filling a prescription early since
her dosages had increased and the quantity had not. The drs
office called in the larger quantity of her prescription last
week, but all this seemed difficult for the pharmacy.
At first they said they couldn't fill it because the insurance
wouldn't pay, meanwhile saying the dr needed to re-up the
prescription, which they did. After the insurance approved
and after the presc was called in a second time, mom called
in and they said the dr hadn't called with the new prescr...
mom was steamed (and it takes alot to steam mom) as this had
been the second time the dr's office had called it in and
she was sure it had been called in... so she sternly told
the pharm 'YES it WAS called in!'... and she had to say that
twice before they would ask someone else to see if they had
taken a call from Claire's dr. Evidently, someone had talked
to the dr's office, and they were going to fill the presc
in 45 minutes. No apologies from the pharm. That call happened
at 6pm. Mom was home with the kids and realized it was getting
too late to go out, and Claire had maybe 2 doses left, mom
was cutting it much too close for her comfort, but would get
the prescr tomorrow. She got a call at 10pm that evening from
the pharm saying that they would fill the presc on Wednesday,
as they only had 50 of the 150 doses... mom asked them to
fill it with what they had and she would get the rest when
it came in... guess it is a good thing dad didn't go down
to get the prescr late in the evening, it seems to always
be his luck that they are never ready, and this would not
have been filled when they said it would have been... and
mom would have possibly heard some choice words. Why doesn't
mom just go to a different pharm? Well, there's a new one
opening close to Claire's home, and she is planning on changing
Meanwhile, the health plan woman has been terrific calling
mom often to see if the prescription was filled and getting
an earful from mom about the pharm and the run-around... it's
been just so darn nutty, almost comical. It goes without saying
that mom sent an email to the pharm website. .. she also may
send one to Claire's insurance to tell them how wonderful
the woman was who has been following up with mom.
slept in her swing as she is still congested and mom wanted
to keep that head 'flowing'. She was up for church in the
morning and greeted by 5 11-year-old boys who were sleeping
over for big brother's birthday. Mayhem when added to Claire
and her big sister... but much fun all the same.
Church was fun taking all the boys. Claire slept through mass
and a few heads turned as she started snoring loudly. The
boys got a big kick out of it.
In the afternoon, dad was home after getting some work done,
and mom and Claire and big sis too a nap... a nice long nap
until the cabinet guy came by to go over some kitchen cabinet
plans with the family. Mom's new kitchen is still not in site,
but they are getting closer!! Grandma and Grandpa called to
see if they would be coming up for Claire's birthday bash,
but opted out as they should be seeing the family soon at
WDW and also for Easter.
Dad had another work-related errand to run, then came home
with dinner and the kids were quickly whisked off to bed.
Claire to bath and then a nightcap. She had eaten a good 8oz
earlier (bananas and pedialyte with some barley cereal) and
threw up an oz of it as she started coughing. Mom thinks it
is just her gagging on some drainage going down the back of
her throat and mom has the same thing, so she can relate.
Claire was in bed by 10pm... and snoring again, with O2 blow
hasn't been sleeping too well lately. Dad thinks it is teeth,
mom thinks it's hunger and gas. Either way, she's been up
late and dad has been so good to talk over late in the evening
as mom has a head cold and feeling very tired. Working full
time with a cold isn't easy, but manageable with decongestants
and coffee. A little Vicks at night and lots of vitamin C
Claire has a head cold too, but dealing with it very well,
not complaining much and taking it in stride.
13lbs 10-1/2 oz
had a very good night, as she has had for several days. Mom
is still trying to recover from her trip. She went to Vegas
with her sisters, mom and friends. Eight women total and one
St. Nick convention... it was crazy. Sorry, can't say more...
you know, 'what happens in Vegas...' and all.
The teeth are really poking through now!! Check out the top
teeth (click on pix for larger image)!
Claire had PT today. Her therapist is going overseas for 3
weeks, so Claire will be seeing another therapist (who used
to come to the house to see Claire back when she was small
Claire had a haircut today, she's looking very stylish in
her new cut. She has music therapy and hospice nurse visit
today... maybe even a weigh in!
Her music therapist is teaching her some sign language, it
is very cute to watch. Claire's nurse came by and said her
lungs sounded really good! Her upper right lobe was still
sounding gunky, but the rest is sounding good and clear. Yeah
Baire!! She weighed in at 13 lbs and 10 1/2oz. Her last weigh
in was 13lbs 5 1/2 oz.
slept through the night. Mom woke her in the morning for meds
and breakfast. Dad will be taking her to her heart appt then
to PT today.
Claire sees her pediatician tomorrow.
She has been eating excellently lately... lots of shakes mixed
in with a formula/ped every now and then to keep things loose.
Mom is stil adding a small amt of vegetable oil to her formula
randomly and giving her vitamins in the morning that include
fluoride. Claire is gaining energy and the smiles are coming
more frequently, like very time you look at her and talk to
her. She adores the attention! And mom adores the smiles,
they make a great team!
She hasn't shown any signs of a relapse so mom is very happy
about having the antib's continued... how
wonderful it will be if she can stay healthy the rest of winter!
Claire's cardiologist said her heart looked good and her VSD
should be closed by the time she's about 6 years old.
Mom picked up Claire and noticed her right tooth appeared
to have broken through the gums. She came home from daycare
and she guzzled down 8oz of shake.
had a very good night, she was up at 4am until 4:30 drinking
3oz of formula. The kids were off today for President's Day,
so dad stayed home with Claire's brother and sister as he
also had many errands to run today. Claire went to daycare
after 4oz for breakfast and drank another 10oz at daycare,
then at home she drank about 12 more oz before evening meds
and daddy put her to bed. Claire drank 27oz today.
went to church today and threw up as her brother had just
finished holding her and handed her to her daddy. Mom took
her away and changed her and cleaned her up, and decided not
to feed her until they got home. She must have been 'too'
full as she was very content during church. Her recent throwups
seem to be related to her random seizures. She may have one
a day, and they are barely noticable, but seem to be enough
to occasionally prompt her to throw up. Poor peanut.
In the afternoon, the boys went to the FSU vs GA Tech basketball
game, FSU lost at the last second with a bogus foul call.
In the evening, Dad and big bro watched the all star basketball
game. No school tomorrow so it is okay. Claire had a banner
day drinking over 24 oz today.
had a nice day. She was a lounge lizard today as mom didn't
want to take her anywhere. Her brother had a game, and mom
had some shopping to do, but kept her home from all that.
Mom will be going out of town next week and wants Claire as
healthy as possible for her daddy.
In the evening, the family picked up some buffalo chicken
fingers and went to a friends home for dinner. Yum. They were
up a little later than usual, but the kids are out of school
Claire drank 28oz today.
had a nice day. She went to daycare after her PT. Mom got
her haircut and is pretty happy with it. The kids have 1/2
day at school today and then can go to afterschool. Claire's
big sis will have a birthday party to go to for a friend in
her class at 2pm, so there will be a lot of logistics to work
out. Dad will likely pick up the kids, go to party and mom
will arrive by the end of the party to pick her up... whew.
Mom called the drs office today to see if Claire's antib's
could be extended. Since mom will be going out of town next
week, Claire would be due for a relapse just as mom was boarding
the plane if she wasn't on antib's. The dr approved and filled
a new prescription. Mom kinda thinks her relapse last time
was due to her coming off the antib's just before she was
fully better. Mom is very excited about this decision... and
much more at ease about how Claire should start gaining more
weight if she could just stay healthy through the rest of
the evening the family had friends over and ordered pizza
with vegies and cheese. The kids had a great time running
around outside and came in to watch Peter Pan. 4 of the 5
kids, Claire included, fell asleep during the movie.
Claire had a banner day drinking a lot of food today. Claire
drank 16oz today.
was up and off to daycare.
She had her RSV shot today and mom saw another mom who she
hadn't seen in a few months. Mom is looking forward to calling
her... maybe in a couple weeks when things settle down a bit
more. After RSV shot, Claire was off to meet her hospice coordinator.
That is always a pleasant visit... and nice for mom to have
someone to chat with about everything and get some feedback.
Mom is a little nervous as she's going out of town next week,
meeting her sisters and mother, and is nervous about leaving
Claire with dad. He's fully capable, but mom is thinking if
Claire is up at her usual 4am, that dad will just get too
tired too quickly. Mom's brother is in town and his wife said
they would be on stand-by, but not too sure dad would ask
for help. His business is really picking up too, so he will
be very preoccupied with that. Claire also ends her antib's
on Saturday, and lately, a few days after her antib's is when
she tends to have a relapse and get sick again. So mom is
nervous about that too!
Mom is considering asking the dr to 're-up' Claire's antib
prescription. He did mention he would consider it once she
got better as she has a 'chronic' lung problem, which is usually
treated with a consistent dose of antib's. Mom will call him
to see what he thinks. She is certain she has at least enough
to get through the weekend and part of next week.
slept through the night. Mom woke her in the morning for meds
and breakfast. Afterwards, mom tried a little PT. Claire stretched
a little and then up on top of the big ball. Claire enjoyed
sitting up there, she was queen of the mountain... and mom
bounced her... and bounced her a little more... and Claire's
head slowly started to come forward... not because it was
the behavior mom wanted, but rather because Claire had a nice
full tummy and bouncing is what Claire's like to do best.
She was going to sleep. Mom was thinking a change in position
would be good to keep the pumpkin awake, so she put her on
her tummy on top of the big ball. She rolled Claire back and
forth on the ball and Claire, once tight, was really loosening
up, mom was so pleased, until she notice Claire had fallen
asleep. She likes tummy sleep best. Mom put her down for her
morning nap. Claire drank 24oz today.
was up at 3am for a bottle. She drank the 3oz that mom fixed
for her and wanted more (er, wasn't tired) so mom fixed another
3oz. Claire drank one and finally went to sleep.
Mom woke her in the morning and she was off to daycare after
a couple oz of shake. Her breathing looks good and shallow,
like she's not struggling. Her coughing in minimal, and she
is giving her family a few smiles, another sign she is on
the mend. She's still on her antbiotics, and they should end
around the 19th.
Claire had PT this afternoon and had a great day. She was
in good spirits and wide awake. She loves rolling over (with
guidance) and she held her rattle and tried to get it in her
mouth. The therapist turned the rattle around so the small
end was by her mouth and Claire held it in her mouth and gummed
it. Mom was so very happy, as Claire was unable to teeth on
her own (probably why the top teeth are still elusive) and
Claire was so happy ... and looking more independent. Mom
was hoping that eventually she would be holding her bottle.
Probably have to work with a 2oz bottle for a while to build
up those muscles first. She played on the big ball, first
sitting and practicing keeping her head down, then laying
and rolling and then standing, but not much of that.
Claire had a good day at daycare, she had about 5-7 oz and
then drank more when she got home. Dad was a bit under the
weather, so he layed on the bed feeding Claire most of the
evening. She drank about 8 more oz. and in bed by 10pm. Claire
probably had close to 20oz of shake today.
was up at 6am for a bottle. She drank pretty well.
Claire's sister is doing well and off to school today.
Mom was hoping to hear from her hospice nurse today to see
if Claire could go to daycare. Mom took Claire off the oxygen
canulla and watched her and she did great. Claire had OT today
and Dad took her and then off to daycare afterwards.
Mom went to Claire's brother's school for a Valentine's party
and then off to work afterwards.
In the evening, everyone was home and after a nice dinner,
Claire had her evening routine and off to bed. Mom noticed
only once that Claire looked off as if she could have been
having a seizure, but maybe not. It wasn't obvious, so if
it was one, it was a very small one.
had only a couple seizures today. They didn't last long at
all, maybe 5-10 seconds. She had a good day and drank very
well... about 24oz today. Mom is hoping the seizure problem
is behind her and they will be seeing more smiles in the near
future! Claire drank 24oz today.
1pm, Claire started having seizures. The were anywhere from
5 minutes to 30 minutes apart... Mom called hospice and they
said they would try to reach the dr. They called back later
and said they would need a tegretol level (blood work to see
what the levels are of Claire's seizure med). Hospice was
great in trying to round up the dr's office and talking with
mom to see what the best way would be to get the level and
get it read. Plan A was to get a hospice nurse to take the
level, plan B was to go to the Health plan office and have
it taken there, and Plan C (the most dreaded perhaps because
of the time involved and the exposure to other very sick people)
was to go to the ER.
Hospice was terrific in rounding up a nurse who would take
the level... mom was pretty drained and asked dad to take
Claire to have the blood drawn. He brought Claire back and
ran the sample to the hospital lab to have it read. Hospice
included their fax number so the hospital would sent the results
Meanwhile, mom gave Claire her 2pm meds early and hoped for
the best. She didn't want to give her an increase in the dosage
without the dr's okay, but also because if the levels were
taken, they could be skewed.
By 10pm, the results were back and hospice called saying her
level was 3.8 and normal was 4-10... so they were low. Mom
decided to increase the dosage only a small amount for her
10pm dosage and Claire would only have two dosages before
they could call the dr in the morning... knowing that is what
he would tell her to do anyway.... the levels were low and
that seems like the obvious thing. The hospice nurse agreed.
Claire was wiped out, and slept well through the night, between
mom and dad. Mom didn't notice any seizures during the night,
but then, she was so exhausted from the day, who is to say
she didn't have them.
hospice nurse came by to see her today and said she was continuing
to improve, but to keep the oxygen on her during the weekend.
Claire's sister was doing well enough to go to school today
(no fever in the past 24 hours) but since she's only in Kindergarten,
and someone had to stay home with Claire anyway... and since
it was Friday, what was one more day... so mom and dad decided
to keep her home today, just one more day to be sure she was
really healthy before shipping her back to school on Monday.