Journal -- 35th Month
slept great. The kids gathered in mom and dads room as it
was big brother's birthday. Claire slept through it, mom thought
she needed the rest. Everyone was off to school this morning
with a busy day planned including meeting with sis's teacher
and RSV shots -- for Claire.
slept great. Mom fed her in small amounts and Claire kept
it down, watched a little tv, ate a little more. Kept her
meds down and had a pretty good morning. Mom put her back
to bed shortly afer her last bite. Claire took a nap to get
ready for PT and OT later today. Mom got back to working.
Claire threw up on the way to PT. Fortunately, it wasn't too
much, mom had antibacterial wipes to clean up the seat and
Claire had a longsleeved shirt on over her onsizie, so mom
just had to take the shirt off as it was just on the sleeves.
She did great in therapy and got some new equipment borrowed
from Children's Home Society. Claire did really well on it
and her family coordinator not only brought the equipment,
but also brought her camera, so mom has some great pix of
Claire and Claire using the equipment.
In the evening, Claire went to dinner with the family to a
mini-sports banquet for her big brother's basketball team.
She did great and gagged once when mom noticed she was sweaty,
she fanned her with a menu and Claire quickly gained her cool.
Claire got home and drank 3-4 oz of her bottle and had her
meds and went right to sleep. It was hard putting her to bed,
she was full of smiles and fun, but mom needed the extra time
for some cleaning and winding down.
slept well, but woke up gagging. Mom rushed in and tried to
divert her attention, and she stopped. Mom covered her back
up and they both went back to sleep. Claire had a pretty good
day. She was up and ate well, but threw up just as dad was
getting back from dropping off the kids to get Claire for
her dr appt. Mom cleaned her up, gave her a bath and packed
up what was left of her breakfast in case she was really hungry
at the drs office. Dad told the dr about her recent throwing
up, he said to keep an eye on her and don't feed her right
after she throws up (but that's when she's really hungry :o/
). Claire weighed in at 16lbs 11oz. Mom picked Claire up from
daycare, as she had just thrown up and the teachers had her
stripped down. Mom borrowed a shirt and took her back to her
classroom to dress her and get her home. Mom decided to stop
temporarily with the duocal and see if that helps. Her teacher
thought she just had flem, or maybe started to aspirate but
caught herself and just threw up instead, as that may be the
only way she knows to get rid of it. Whew. Mom got her home,
fed her a big dinner, she threw up half. Mom decided to just
feed her 2-3 oz at a time and let her body digest it, see
if she's just getting too much food. She's been eating great
and keeping at least half her food down. Mom is also going
to try to get to her rest after she eats... not that Claire
gets up and dances after eating, but mom is thinking putting
her to bed, even if she just lays there and doesn't sleep.
As long as she's on her side, it seems like it would help
her get it all up if she does gag. In the evening, Claire
kept the rest of her food down, esp after mom put a sock on
her 'free' hand, maybe she's gagging herself and no one sees
it? Claire kept her meds down(yeah!) and went right to sleep
when she got into her bed.
was up randomly. At one point, mom opened her door a little
more to let more warm air in. The furnace is right outside
her door, so mom tends to leave Claire's door only cracked
a bit, esp with her latest heat rash. Within an hour later,
around 2am, Claire seemed hungry (from what mom could hear
in the monitor) and started crying, so mom fixed her about
4oz and Claire was fed and back in bed in about 30 minutes,
and not another peep out of her. Maybe a growth spurt?
slept pretty well. She was up for a bottle and meds, then
back to bed, so mom is wondering just how well she did sleep.
She woke up before PT fussing and mom fed her up until the
last possible second, she finished about 8-9oz of cereal and
out they went. She only had a 30 min session with PT, but
she got some good stretches in and mom got more ideas of what
to use Claire's new bench for (PT is ordering for her). It
will be great for her to sit on, her feet touch the ground,
and mom can pick her up by the trunk and help her go from
stand to sit. In OT, the therapist actually got Claire to
take her hand out of her mouth and bat at some beads... she
played with them for a good long while. Mom was so tickled..
it takes a lot to get Claire to take her hands out of her
mouth. They discussed using signs (sign language) and which
ones she should learn next as she seems to have the 'put hand
on mouth' sign down pat for eating more. At least, that is
what mom and the daycare folks think, and when she does that,
she usually gets food, so it reinforces it. Mom wants Claire
to learn to put her arms up when she wants to be held, or
get out of her chair. Mom wants to communicate with Claire,
and knows it is one thing to learn sign language, but a whole
new thing to be able to teach it to someone else, esp someone
who has limitations. Mom will be seeking help on all that
had her ortho appt today with the local dr. He specializes
in spines and expecially scoliosis and children. He saw Claire
on a special appt that her dr helped set up to see if she
would need a brace. They took xrays and her spine obviously
curves. Front to back is about 45% and side to side is close
to 23%. Mom can't remember the exact numbers, but those are
close. The dr said that a brace would only inhibit her breathing
and likely add to the frequency of pnuem's, so he recommended
lots of exercising to stretch her back and get her muscles
stronger. Mom has concerns about her 'hunching over' when
she sits, and he said it was good for her to sit, and she
will hunch over, but with other exercises to stretch her back
out frequently, it shouldn't get any worse. Dad mentioned
the PT was concerned with her hips and shoulders. Hip sockets
are shallow, but she should still be able to learn to stand
and work on walking, so really no restrictions on anything
she is trying to learn. Mom was pleased with that.
Mom held Claire on her lap, planted her feet and lifted her
up by the trunk and Claire pushed up to near-stand (maybe
a few degrees shy of a straight up stand, but definitely holding
her weight, mom just guided her) for the doc. Mom wanted him
to see that she wants to bear weight. Mom was so proud she
stood on que.
a great night and mom even got up once to turn the monitor
up louder since Claire wasn't even snoring. Mom woke her up
early for a diaper change and to get her ready for school.
Dad took over and changed her and gave her meds while mom
finished getting ready for work and off they went. Claire
drank about 3+oz of formula this morning, mom added bananas
and pedialyte for flavor and duocal for more calories... always
trying to fatten that baby up!! Dad took Claire to PT today.
No word on the xrays from Friday.
slept through the night - yeah!
She was up early for breakfast and slept through all of mass
this morning. In the afternoon, mom put her on a blanket on
the floor to help straighten her back, and eventually she
decided she didn't like that position and moved all around,
almost off the blanket. She's getting more and more mobile.
Mom likes to see that. Claire's older sister helped her mom
make igloo cakes and penguins (from oreos) for sis's class,
they are studying Antarctica and the Arctic.
The boys went to a basketball game and the girls hung out.
Claire drank a bottle before bed and snuggled with mom later
in the evening before going to bed and straight to sleep.
enjoyed her morning as mom let her sleep in only to get to
play with two of her afterschool teachers when she got up.
They came over to watch the kids while mom and dad went to
an event on campus for mom's work. It was fun and nice to
spend some time together. Mom arrived home and the kids had
had a ball with their new 'college friends'. Claire's big
brother even found out that they know one of his all-time
favorite college players, so he was excited at the possibility
of getting an autograph!
In the evening, everyone relaxed and mom made a couple cakes
to decorate tomorrow as igloos.
gets xrays today to see how her lungs are doing (fingers crossed!).
had a much better night, hardly making a peep.
Mom woke her in the morning... she was half awake, but eyes
shut. Full of smiles. Mom took her from her bed and put her
in the carseat on the counter for her meds and breakfast.
Still full of smiles. Mom got out the camera, but most of
the pix seem to be blurry... oh well, there are plenty more
smiles where that came from. Claire ate a bunch and napped
a bit. She was coughing a lot this morning, and eventually
threw up some, which included flem. Still kept most of it
down, so mom wasn't too disappointed.
Dad was watching her as he worked on his laptop in the kitchen,
and mom got some work done in the study.
Later, Claire got a nice bath and a hair cut (see before and
after pix below)and then mom made a bottle for the road. They
went to OT where Claire got a bit of a workout on her weight
bearing on her arms... Claire doesn't particularly like that,
so she wasn't pleased, but worked hard all the same. Then
came PT, and she got a really good workout. Arms, rolling,
sit ups, standing... you name it, she was exhausted when it
was all over... and hungry. Mom got her home in time for afternoon
meds and lunch, then put her in her crib for a nap. Mom went
back to work.
was tossing and turning much of the night, as mom was awake
listening for her. She was in her own bed, so she's certainly
got more room to toss and turn. Around 4am, mom went in and
covered her a bit, thinking she just couldn't sleep because
she was cool, and they both got some sleep after that.
Claire was up in the morning and after a bit of food, she
was off to school and mom off to work.
Mom got a call late in the day that Claire hadn't eaten anything
all day, tho she has been full of smiles and seems well. Mom
will pick her up a little early and get food in her asap,
so she can get another good feeding in before nighttime. Big
brother has a game, so he's going to that with dad after school.
The family will regroup later tonight.
decided that kicking her daddy is a new past time at night.
She also decided to sharpen her nails on his back as well.
Poor daddy. Multiple times, as in the past few nights, mom
and dad were awakened frequently to Claire's shenanigans.
Mom got an appt in the morning for Claire to see her ped now
that he's back in town. He thought she was doing better, and
said she could go to school tomorrow... mom appreciated that.
It was determined that she'd lost about a pound, and that
saddened mom, but she actually thought it would be more the
way she went days (it seemed) getting little or no nutrition
because she was throwing up so much. That's in the past, now
it is time to fatten that little girl back up. Mom feels she
has the tools and the know-how, just got her work cut out
for her. Fingers crossed that she can gain before she gets
sick again. Overall, she looks good tho. Claire went to PT
afterwards with dad and got her new stander... a banner day
for the sweet pea.
Mom went on to work and found a few surprises waiting there,
including a new 'boss'. Things will likely work out fine tho
(again with the finger crossing).
In the evening, big brother had baseball practice and big
sister had her testing for her white belt in karate... her
first belt and mom and dad are so tickled. Claire ate by spoon
in the evening, the first time she's taken it in a few days,
tho mom has offered it on several occasions.
didn't appear to have any temp during the night, at one point
she woke up, but was very sweaty... mom is praying that it
is a good sign. No dry heaves and no throwing up either -
yeah! (fingers crossed this continues). The throwing up tended
to happen when she was in the middle of a fever, esp if mom
was feeding her. Mom learned pretty slowly that she shouldn't
feed Claire if she had, or was getting (had a low grade) fever...
otherwise, it would all come back up.
She was up at 7am, and seemed hungry and fussy... mom fixed
a bottle (5oz of pedialyte with bananas and a little duocal)
and mom squirted it into her mouth, and she drank it all in
about 20 minutes, after her morning med. She doesn't seem
to want anything in her mouth, maybe the liquid is coming
out too fast, or, more likely, she has a sore throat. Mom
isn't sure which, but has seen this before, so she's just
going to go along with it, as long as she is drinking and
seems hungry, mom is going to keep squirting in the fluids.
Mom went to church with Claire's big sister, today is Her
day... mom and big sis planned a day for her and spend the
day together, including caring for Claire while dad and big
brother go to mass, mom isn't comfortable with taking Claire
to mass, and they still have her on oxygen. She has a really
loud and loose cough and her lungs sound 'creaky', even without
a steth'scope. If she isn't better soon, mom doesn't know
what they will do next, as Claire is on her 'best' antibiotic...
went in for another check up this morning. A follow up from
yesterday, different doctor. She had a temp of 101.5 in the
morning, and mom gave her tylenol in the waiting room. Since
she had the temp, she got another shot of antibiotic, didn't
cry at all, just fell back to sleep...amazing child!
Mom took her home and throughout the day gave her nebulizer
treatments and chest percussions. Claire also got a dose of
antibiotic and drank about 15oz of fluids today. Mom tried
spoon feeding her, but Claire got mad, and so mom went back
to the haberman. Claire would randomly decided to drink on
her own, but often opting for mom to squirt it in (to the
side cheek in small amounts) and Claire would just swallow.
Mom is adding duocal, a high calorie high fat powder that
was recommended to her by the hospital nutritionist when Claire
was in the hospital last summer. Claire will sleep with her
mom and dad again tonight, the 4th night (or so, mom's lost
count). For as much as dad compains that Claire kicks him
all night (she turns 90 degrees and taps him all night with
her feed), mom is happier to be in bed with a little room
than to be in a recliner at the hospital with 3 pillows under
her for comfort... a word she uses lightly in regards to hospital
the drs office was still insisting that Claire go to ER "if"
she is really bad off, and mom not knowing what that meant,
was in total confusion and wanted SOMEONE to see Claire before
going to the hospital. If it wasn't so serious, and mom didn't
know, she would just want an antibiotic and wait it all out
with the usual chest percussions, nebulizer treatments to
open the bronch, and as much food as the little peanut could
keep down... with random decongestants.
Mom asked the drs office (dr still out until Monday) if there
was another ped they could send them to, they said no... the
only other alternative was to go to the 'urgent care' facility
associated with their HMO. Mom agreed, at least it was something,
and there is a place for xrays just down the hallway, bloodwork
too, talk about one-stop shopping. The only reason mom would
hesitate (and wasn't keen on the idea earlier) was that you
don't know what dr you will get... and mom stereotypes drs
about as much as drs stereotype trisomy babies... mom learned
from the best.
They got a 1:30pm appt and was out of the house at 1pm to
take Claire to see the school nurse, who knows Claire (listens
to her daily when she's at school -- she's been out all week
this week tho). The nurse was wonderful, listened to Claire
and said she sounded a bit gunky (the technical term used
frequently to describe Claire's lungs, even on a good day).
Mom had some baseline now to go see the 'new' dr.
The visit turned out to be great... everything mom had hoped
for, mainly because the dr didn't take one look at her and
send them to ER. He did a chest xray which showed pnuem in
her right lung... and lots of it. She got some motrin, as
she had a fever that morning while visiting the dr, and a
shot of an antibiotic, then a prescription for another antibiotic.
After the appt, they went to get the antib that was called
in, but it wasn't ready yet, and talk about long lines in
the pharm... the duocal mom ordered was there, but mom opted
to come back and get it all at once. Mom did pick up some
more pedialyte the regular check out and they headed home.
In the evening, Claire slept a lot and ate pretty well before
bed. She's good at downing 5oz at a time of pedialyte, and
mom can put almost anything in it, bananas, formula, she just
loves the stuff (good thing too!)
Mom is nervous, and glad she's on her antib of choice. Dad
isn't nervous since it is only one lung that is compromised
(he's seen her pull out of worse situations). Not very comforting
for mom to hear. sigh.
was tossing and turning much of the night... that meant mom
and dad didn't get a lot of sleep either. Dad's been a real
trooper through all this. Claire's temp went up to 101 during
the night around 1:30am and she started coughing and gagging
(like dry heaves) and mom gave her some motrin and some pedialyte.
She probably drank 5 oz during the night and another 5oz with
duocal by 3pm. Not a lot. Meanwhile, mom's been calling all
over town to find more duocal and found out that Walgreens
would order her one can at a time. She was so happy. It will
be ready for pick up tomorrow at noon. Mom is going to start
Claire on formula/pedialyte later today to get more calories
in her. Finger crossed that the little peanut cooperates.
Claire's teacher called today to check up on her and mom had
a good long talk with her and got some good ideas of what
to do next, including getting some calories in the little
sweet pea and waking her more frequently to do it. She said
it would be okay for mom to bring Claire in to see the school
nurse, but not such a good idea for her to go to the classroom
after 1am, Claire's temp spiked again to 102.5 and she threw
up. Claire's been eating sporatically and mom's been squeezing
the food in. It isn't that she's so lethargic, but rather
that she just puts her lips together and fights mom... the
little stinker. She had a pretty good day. Mom called the
dr only to find out he was out of town for the week, and if
they needed to, they'd need to see the nurse, or go to ER.
The nurse at the dr's office hadn't really seen Claire, so
mom thought about going to Claire's school and seeing the
nurse there, who sees her everyday. She couldn't prescribe
anything, but would certain have a thing or two to say (she
always does -- and mom has NO problem with that). Mom loves
the extra eyes and ears when it comes to Claire, and keeping
her healthy. Mom had to cancel therapy today. Claire loves
her therapy. :o\
stayed home with daddy today until around noon and dad handed
off the baton to mom. In th evening, Claire's tem went to
101.8 around 5:30pm, and then up to over 103 by 9pm, even
after the earlier motrin. Claire had a pretty big seizure
around that time. Mom was frantic, but gave Claire a little
more motrin and her anti-seizure meds an hour early, then
put Claire in the bath to try to bring her temp down asap.
Poor dear. She didn't fuss as much as mom would expect, and
mom tried to rationalize it was good for her lungs to cry,
knowing there wasn't much else mom could do to get the temp
down asap. Eventually it came down as mom held Claire after
her tub, teeth chattering, and then she fell asleep.
had a low grade temp around 7pm tonight, 100.7 under her arm,
so mom gave her some motrin and put her to bed shortly after.
She will likely need to stay home tomorrow from school.
slept pretty well, tho mom is sure she was up often during
the night. She seems to have become quite the little night
owl, but not crying or fussing, just blowing (bubbles) and
chit-chatting off an on during the night, and mom lets her
have her fun.
Mom went to wake her this morning, but she was awake already,
laying on her back, eyes wide open and one arm up in the air,
as if waiting (quietly) for someone to come get her for breakfast
Mom changed her diaper and gave her med, then gave her breakfast
and Claire was so hungry she ate most of the 10 or so oz of
cereal mom fixed for her. This morning, her cereal was rice
cereal w/banana in already in it, formula, vitamins with flouride
and a bit of olive oil... oh yeah, mom added a little powdered
formula too, for a few more calories. Claire loved it all.
Mom was very pleased. Mom has been feeding Claire in her carseat
on the countertop lately, so she's up with everyone else and
in between feedings (typically mom gives her a 5-10 minute
break and tries feeding again) Claire is with mom as she does
dishes or works on dinner. Hopefully, Claire will have a new
'straight-back, inclined' chaire soon and she can be in a
better position for eating and hanging out on the counter
Dad put a dress on Claire and off she went with mom to daycare
on a nice full tummy... about fell asleep on the way in.
day in Claire's home today. It's her daddy's birthday today.
Claire's big brother woke mom up early and everyone got dressed
quietly and woke daddy up to tell him they were all ready
to leave and he had a few minutes to get ready as they were
taking him out to breakfast before school. He was surprised
alright, maybe because he was going out to breakfast for his
birthday, but probably more likely that everyone was dressed
and ready by 7am! It helps that the kids didn't eat breakfast,
that is typically the bottleneck at Claire's home in the morning.
Dad got a nice present for his birthday and out the door they
Claire had PT today, and her therapist was having a lousy
day, but said that her time with Claire really brightened
her day. Claire had a great session and even wanted to go
from sitting to standing... so they worked on it, and when
the therapist thought Claire had enough, Claire tried to push
up once more on her legs. Mom told her she really wants to
run with the 'big dogs'... and she's just stubborn enough
to do it one day. Mom is very hopeful that Claire will walk
one day, if even just with a walker. She needs to work more
on sign language with Claire. It has always been a dream of
mom to see Claire walk and talk, even if she walked with a
walker, and spoke only in sign language... Claire is mom's
little project and they have very high goals.
Her therapist was very pleased with Claire's progress and
even suggested asking for a little bench for Claire to have
at home. It is just tall enough for her to sit on and have
her feet on the ground so she can practice going from sitting
to standing. Along with that, mom wants to see if Claire can
get a chair to sit in that has a flat back to help with Claire's
scoliosis, yet it is fairly well upright enough so mom could
feed her in that chair too.
After PT, Claire and mom picked up the kids from school and
they went to get a cake mix for Dad's birthday cake. Claire's
big brother wanted angelfood and mom agreed, so they also
got strawberries, whipped cream and vanilla ice cream... yum!
They ordered Italian food delivered, as dad didn't really
want to go out and wanted to work on some things around the
home and throw the football with Claire's big brother while
her big sis did her homework and mom baked and cut up strawberries...
after dinner, family came over for cake and celebrated dad's
birthday. A fun night. Claire got her meds very late, with
all the commotion, mom realized it and gave her a late dose,
then another half dose before bedtime. The thing with Claire's
anti-seizure meds is that missing one dose could cause her
to have seizures, so mom freaks when she misses one, and even
set the alarm to get up at midnight to give her another dose,
but later realized that she could maybe just give her a half
dose before bed and have her back on schedule in the morning,
too much meds will make Claire sleepy, and that may compromise
her eating. It is all so confusing.