Claire's Journal -- Eleventh Month
slept through the night last night. Mom and dad are rested.
Mom woke Claire from her deep slumber and gave her meds then
got her dressed. She was a bit sweaty, so mom gave her a quick
sponge-bath and dressed her for school. Mom gave her some prunes
instead of bananas in her shake this morning, to keep her BMs
'regular'. She drank all but an ounce, which she finished on
her way to school. Mom sent 4oz of pedialyte with juice for
her to drink before she drinks her formula, again, to keep her
Mom spoke with the Audiologist today to set up an appointment for Claire. The Audiologist mentioned before that there was a possiblity that Claire may be able to use a hearing aid. The possiblity was enough to make mom very happy. When mom spoke to her today, the Audiologist said that she already ordered an aid for Claire, and that she would need another test to see if hearing had changed, and be fitted for it. Mom was jumping for JOY! To see Claire's face when she can hear... will it be a good face? or, given our household, will she just rip it off her ear and decide she was happy with no hearing... :o\
Claire woke up during the night for a few ounces of shake, then fell back to sleep once she had a full tummy. Mom woke her in the morning to get ready for school. Dad picked her up from school and she hung out until it was time to go out to dinner to celebrate her brother's birthday. The family enjoyed Japanese Hibachi and was joined by Claire's uncle, aunt and two cousins. They came over to the house afterwards and hung out for a short while until it was time to get the kids to bed. Claire drank shake at the restaurant and then again at home mom made her another shake. Altogether she drank about 7oz before mom put her to bed around 9pm.
woke up at 1:30am and went back at 3am when she had a full tummy.
She got up and got dressed for church, accompanied by 6 other children including her brother and sister... and mom and dad, or course. She snored nice and loudly at church... no one seemed to care.
She came home to regroup with the kids and head out to her brother's basketball game with her mom. Then home where she just took it easy all afternoon... no nap.
slept well until close to 4:30am when she woke up hungry. Mom
fixed her 4oz of shake and she drank that in about 45 minutes.
She dozed back to sleep on mom's chest and mom put her back
in her bassinet. She was up again at 7am, hungry. Mom gave her
meds and pedialyte to wash them down, then Claire fell back
to sleep again until about 10am, when mom woke her to eat breakfast.
She had bananas and applesauce with a splash of formula.
Claire spent part of the day swinging and the rest of the day eating... she just kept wanting more food... it was nice for mom, except she wanted to get some cleaning done since Claire's brother was having a small slumber party that night to celebrate his birthday. He turns 10 on Monday. (Double digits!!) Mom is having a hard time believing she has a 10 year old child... especially since she is so young herself. ;o)
Claire fell asleep around 8pm on the couch, but woke up when mom put her to bed... so mom fed her more shake. She went to sleep around 10:30pm. She as a tired little bear.
slept through the night last night.
slept well until close to 3am when she woke up hungry. Mom fixed
her 4oz of shake and she drank that in about 45 minutes. Still
hungry. Mom fixed her 3oz of formula/pedialyte to wash it all
down, and she drank 2oz before finally going back to sleep around
5am. While mom showered, Claire hung out in her carseat in the
bathroom to soak in all that nice humidity.
She was up around 9am and hungry, so mom fixed her 4oz of pedialyte and juice. She got that done by 10am... Claire isn't usually in much of a hurry to eat.
She still has her loose, loud cough, but seems to be eating well.
She had her first bath in a couple days around 5pm (mom didn't want her to get a chill). She ate really well all day, including about 7 ounces in the evening and went to bed around 10pm.
her early morning hours, Claire had a very small fever at 99.3,
so mom gave her some infant Motrin... also thinking it would
help her sleep better. Mom woke Claire at 9am to eat more. Mom
fixed her a shake and she ate 2oz by 10am, then mom thought
a break would be good. Claire started fussing around 10:30,
so she had another ounce and went to sleep on mom's chest. Eventually
mom put her on the bed to get some solid rest so mom can get
a little work done. Mom has some oxygen blowing on Claire as
she sleeps, so she won't have to strain to breathe. Her color
is really good and she seems to have some energy and wants to
be held (who can blame her for that).
Mom woke Claire up at 2pm to eat. She was hungry and ate 3 1/2 oz of shake and then another 3oz pedialyte/formula by 5pm.
Claire had the hospice nurse come by and check in on her. During her visit around 5pm, Claire had a temp of 100.1, so mom gave her some Infant Advil. It seems like it just shot up quickly, and she didn't want to take a chance of it getting too high before the Advil 'kicked in'. Mom cancelled all Claire's other therapies and appts today. She suspects Claire will have an Xray on Friday to see if she has cleared up any. Claire drank another 4oz of shake by 8:30pm and mom put her in her bed. She isn't sleeping, but mom didn't want to take a chance of her coughing and throwing it up, so she is kept in a nice quiet place. She also got her second dose of antibiotic tonight, along with heart meds, anti-seizure meds and decongestant. If she doesn't gain weight from the shakes, she surely should be gaining weight from all the meds. She finally fell asleep around 9pm.
Thanks everyone for your prayers.
and her daddy went to bed at 1am, then Claire was up again just
after 2am and felt warm to mom... mom changed her diaper and
checked her temp. It was 101.5, so mom gave her some Infant
Advil, put a cool wet washcloth on her head (kept changing it
around) and fed her pedialyte until her temp came down. It came
down to 100.8 by 3am, so mom put her back to bed... Claire fell
She woke up again at 7:30am, her temp was up again to 101.1 and mom gave her some Infant Motrin and about 2oz of pedialyte. Around 9:30, her temp was up to 101.3, so mom gave her more Infant Motrin. Claire has a nasty cough - paired with the fever, so mom will have her on Pedialyte all morning, and maybe most of the day, depending on how she is doing. Claire won't go to daycare today. She has an appt for RSV shots, so mom needs to call them to reschedule.
Claire went to see the dr and he sent her to get blood-work and X-rays. At the dr office, she had a low-grade fever -- and her weight had gone down to 8lbs, 6oz. The radiologist read the X-rays and called mom back (from the parking lot)to get more 'pix' of Claire. She knew about T18 and was amazed that Claire was doing so well. She talked with mom a while and was truly interested in Claire's story. That made mom happy.
Around 4pm, mom got a call from the ped who said she had pneumonia, to start with antibiotics. The dr office called them in and dad picked them up around 6pm, but they weren't ready - he waited 30 minutes and finally got them.
The ped also said to let hospice know and if she gets worse, everyone can make decisions together about hospitalizing her, etc.
The pharmacist recommended talking to the ped cardiologist since it could conflict with one of her heart meds. Mom was able to reach the ped card and he said her doses of the heart meds were so small that it wouldn't affect them. He's great, mom was able to call him and get a quick call back late in the evening. Claire is truly blessed to have such terrific doctors.
Claire went to sleep around 7pm, but mom had to wake her for her antibiotics. She quickly fell back asleep until around 11pm. When she woke, dad fed her about an oz of formula with a splash of pedialyte (for flavor). He brought her to bed around 1am, and mom continued to get her to eat until about 4am. She had another oz of formula/pedialyte and then 2oz of shake after that. Mom thought that was pretty good considering how very tired she was.
slept well last night. She woke up for a 5am feeding and mom
gave her some Pedialyte and she went back to sleep. She only
drank about an ounce.
She went to daycare and finished off 3oz of Pedialyte and 2oz of bananas and formula... then she had another 4oz of formula with pedialyte mixed in.
She came home and drank 5oz of shake, but threw up maybe 2 oz of it... mom thinks her congestion is bothering her. She had Early Intervention this evening and her nurse and mom decided with 2PTs a week and starting OT, they will hold off on EI for a little while to see how things go.
Claire was asleep at 7pm and up at 11:30 for a snack. She went back to sleep after 2-3 oz of shake, then she was up again at midnight and her daddy watched her until about 1am. She slept part of that time while he got some work done.
||Claire slept well last night. She went to bed when mom and dad went to bed at 2am and then slept until 9am when mom woke her for church. She snored through church and came home and napped even more when dad watched her and mom took a nap. She was awake for a while in the evening to play with mom, then back to sleep on the blanket on the floor after PT with mom. Mom put her in her nicely warmed bed around 8pm and Claire woke again around 11:30pm, as if she were hungry. Mom made her a shake and dad took her to feed her, but she didn't eat more than an ounce, and fell asleep on his chest, so he put her back on her blanket on the floor so he could finish some laundry and fell asleep. Around 2am they both went stumbling into bed.|
slept well after 11pm until she woke mom up at 6am for some
breakfast and meds. Then she went back to sleep until 10am,
and let mom sleep in. Dad too.
She had a nice lazy day, playing with mom most of the day and being good while mom cleaned up around the house.
In the evening, friends came over and Claire stayed up and watched everyone play Cranium until 1am. She was not sleepy, but finally went to sleep when everyone left.
had a fun night. She was up for most only some of it ... She
woke up at midnight and kept mom and dad on their toes until
about 2am, when she finally dozed off. Dad got up with her around
midnight and shortly afterwards she threw up - dad asked for
a little help. She probably just ate too much at that point.
Mom settled her down and they went to sleep. She was up for
Claire had a nice day at daycare and had a wonderful lady, a hospice volunteer, come and stay with her and her brother and sister while mom and dad were able to go out for dinner. The kids had a wonderful time making gummy bears and watching movies. She even bought the kids happy meals.
Mom and dad got home before 10pm and everyone was ready for bed.
||Claire was up at 12:30am until 2am. She drank a banana shake and went back to bed. Mom woke her up in the morning to get ready for daycare. Dad took her in. Looks like she may have actually found routing the family can live with. Just getting up in the middle of the night for a snack. Mom doesn't mind if it is only an hour or two if it means she is happy and eating... mom loves fattening up that little Miss Claire.|
was up with her dad until 1am. At 1:30am, mom was up with
her until 3:30am and she was eating her shakes. She finally
settled down. Claire was very congested with a very runny
nose. Just as mom would clean her up and 'suction' her nose,
it would be runny again. Poor dear.
got some work done this morning as Claire slept in until 8:30am.
Mom woke her up and gave her meds and a bath. She finished off
some Pedialyte and juice and mom made her a milkshake for the
road, and dad took her to daycare.
Mom picked up Claire afterwork for her photoshoot for her 10 month pictures. Mom was very pleased with them and think they got some smiles, tho Claire didn't mean for the smiles to get out - and certainly didn't seem to feel them, they were captured all the same.
Mom and Claire went to bed at 9pm and Claire was up at midnight all congested. Mom had a bottle ready, and dad fed her so mom could get back to sleep.
was up until 3am. Mom had been sleeping since 10:30pm and Dad
had been up with her. At 2am, he informed mom that he was exhausted
and she offered to take over. He gave Claire a bottle, but she
wasn't happy, so mom took over. Mom gave Claire some Mylacon
and 2oz later, Claire fell asleep. Mom had to wake her in the
morning for daycare. Just as dad opened the door to leave with
the kids, the skies opened and it started raining something
Claire has pretty much decided that there is too much going on to sleep. So she has been having many awake hours... She powernaps for about 20 minutes each day, maybe twice a day, and falls asleep for about 5 hours in the wee hours of the morning. Mom thinks that something is bugging her and she just can't sleep. Perhaps a BM, perhaps a series of very mild seizures that go unnoticed by everyone but Claire, and is enough to wake her in her sleep. To look at her she seems rested, but it can't go on for much longer... and then everyone will be in for a long sleepy night.
Mom gave Claire some shake and she drank really well. Then she fell asleep in her boppy pillow. She had her meds, but no bath. Mom put her in her bassinett. Since she fell asleep on her back, mom put her on her back, and Claire snored something awful. Mom decided it would be hard to sleep with that loud snoring baby, and thought she would put Claire on her side, but Claire had rolled to the side already, and the snoring was more of a loud snore than a 'shake the house' snore. There is no quiet snore with Claire.
Claire proceeded to wake up about every hour. She would go back to sleep within about 5 minutes... but getting up every hour took it's toll on mom.
hasn't been sleeping much. Few BMs too. They may be related.
Mom has slowly increased her dosage of seizure meds to what
the dr told her to do. Mom would love to hear she is off the
meds altogether, but perhaps that day will come. For now, she
is just happy to have the med working properly.
Claire went to bed around 9:30 or 10pm. Mom followed soon after. Another hour or so later, Claire was awake and sweating immensly. Mom asked Dad to changer her, as he was still up watching tv and working on some laundry. Mom thought he changed her and put her back down, but evidently, he kept her out watching tv with him. What a great daddy Claire has. And she was so happy to have him all to herself, she just couldn't sleep!
was up around 2am for a few minutes. She had been sweating,
so mom changed her clothes and gave her a few sips of Pedialyte
and she went back to sleep.
Mom woke the Peanut up this morning for daycare and Claire left with dad and the other kids.
came to bed with Claire around 1am. Mom held her with a bottle
of pedialyte and dozed off. Mom woke up with Claire and noticed
Claire looking up at her with her big blue eyes... as if to
say, 'mom... hello... bored here!'... but she didn't fuss and
eventually she went to sleep, around 2am. Mom put her back in
her bassinet then and everyone got a little rest.
She was awakened by a hurried mom and swept off by an equally hurried dad to daycare.
She had a good day. Her care giver tried putting pedialyte in the formula. Lately, Claire hasn't cared much for her formula, but with the Pedialyte in it, seems to just gulp it down. So she gets plenty of fluids at daycare, and solids at home. She's been eating really really well! Mom is proud and thinks she is maybe over 9lbs. Need to get her to her weigh-ins.
|January 21||Claire slept through the night - again - yeah!!. She got up and had her meds and pedialyte/juice and another bath; mom wants her clean for her appointments today. It took Claire a while to finish the juice, and once she was done with that, she had a 3-4oz tub of bananas with a little formula... downed that quickly. Can you say, "Growth Spurt" -- well, with Claire, that is a term that mom uses loosley. Then the physical therapist came to see her so she had to be content with all that food, but once she was done with PT, she downed another 4oz of milkshake... still fussing for more, but mom was hesitant... thinking she didn't want to see Claire's food again, and put Claire down for a little nap around 3:15pm. Mom won't let her sleep more than an hour, as that got her into trouble on Sunday when Claire had a nice long 3 hour nap and was awake the entire night.|
slept through the night. She got up and had her morning routine
of meds, pedialyte and face washing, then off to daycare.
She ate as much and as quickly as her mom could feed her, then a nice warm bath and into her warm bed. She still likes the bottle in her mouth when she goes to bed, so mom allowed that.
was awake the entire night until about 7am. Dad gave her more
banana shake, but it wasn't enough to make her tired. Aside
from the one nap around midnight that was 2 hours long, she
pretty much stayed awake until morning.
Mom noticed when Claire was in her playpen, she was trying so hard to roll over. She may have done it, but mom had her wrapped tightly in blankets to be sure she was warm (Claire only sleeps when she is really warm).
At 6am, mom gave her her meds and by 7am she went back to sleep, so did mom and dad, until about 11am. Since they were staying with friends, Claire's brother and sister were well entertained and fed.
Claire did really well coming home on the car trip, but didn't sleep, just hung out and counted her fingers. Claire and her mom went to bed around 9:30pm. Claire's tummy was really full, so full it looked unnatural, but she had just eaten about 6-7oz of shake just before her bath, so it seemed justified. Mom put her in her bassinet while Claire was still awake, hoping she would be able to get herself settled in and asleep. She wasn't too happy with that idea, and mom mixed up 2oz of prunes/apples and about 1/4oz of formula and Claire ate that and fell asleep just as she was finishing it up.
|January 18||Mom woke Claire in the morning for her meds. Claire had a nice long nap, about 3 hours, in the middle of the day and was up by 5pm. Mom put her to bed in the evening -- she finally drifted to sleep around midnight, but was up at 2am... Claire wasn't too crazy about going back to sleep when there was fun to be had, so eventually, mom took her out where dad was playing a marathon RISK game with friends, and mom went in to get a bit of sleep. About 1/2 hours worth.|
had a pretty good night. Today they go to Georgia to stay with
some friends over the weekend and watch the playoffs on Sunday
-- big party.
She went to bed around10:30pm. but was up again at midnight for a snack.
was up at midnight until about 3am. Good thing she and mom went
to bed around 10pm, so they had a bit of a nap. She was up again,
bright and early to go to daycare at 8am. She left with her
daddy and her brother and sister on the morning 'train' (dad's
Claire goes for a weigh-in today, and her sister goes for a second flu shot.
Claire's daddy didn't have time to pick her up for her weighin- so mom will have to reschedule.
slept through the night - no bottle, no pacifier for the second
night in a row. Mom slept too.
The ped office called and said mom could increase Claire's dosage by 1/4. Claire seems to be doing so well, so mom will talk to the dr to see what he thinks about waiting. Mom isn't sure what would happen if she did wait to increse the dosage. Mom doesn't like giving too much medicine, esp if Claire's seizures seem to be under control, but will do whatever the doctor prescribes.
She went to daycare bright and early and had a great day, then came home and started fussing in the evening. Mom wasn't sure why, so she gave her a bath and lots of dinner. Claire drank about 4oz of shake and fell asleep, for about 2-3 hours, then was up again at midnight.
slept through the night - no bottle, no pacifier. Mom was so
She had an Early Intervention appt today, but the EI cancelled as she had a little cold. She had a Hospice appt. The Hospice nurse cancelled - also a cold, but the family coordinator came by to visit. Claire also had Music Therapy today, and mom helped out with that. It was fun watching Claire's reactions to different sounds, vibrations of the guitar under her feed and mom stroking her arms, legs, head, etc with changes in the beat of the music.
Claire had a really good day eating. She drank 4oz in the morning of Pedialyte and Juicy Juice, to keep her loosened up. Then, she drank about 15+oz of milkshake throughout the day, along with a nice long morning nap (so mom got a lot of work done).
Dad came home to babysit for a bit while mom went to a meeting for work for a few hours.
In the evening, Claire had her dinner, lots, and fell asleep in mom's arms around 7:30pm -- just too darn tired and full, even skipped her bath. It may have been too early to put her to sleep, but mom wanted to get a bit more work done and get to bed early herself.
During the night she really was a good baby, easily comforted with a bottle, she just didn't want to sleep. Mom had her wrapped up in two blankets, she even had her sleeping on the bed for a while, but once put back in her bassinet, well, Claire didn't want any part of that. Claire is quite clever and seems to know how to get what she wants... mom's full attention!
Around 5:30am, mom woke dad and asked him to take over so she could try to get 2 hours of sleep in. He ended up falling back to sleep after giving Claire a bottle and everyone in the house overslept. Kids were late for school, complete mayhem. :o)
Claire went to daycare and mom off to work after mom and dad dropped dad's car off in the morning for some work. Mom had her orange juice, vitamin and cup of coffee to get her brain started. Meanwhile, while holding Claire, Claire looked up at mom wanting to crack a smile... as if to say, 'what's the problem mom, didn't we have fun last night?'. She was bright eyed and ready to play. Her little cheeks looked so chubby (well, she did spend most of the night eating) and she had wonderful color.
Let's hope for a more restful night tonight! Claire didn't sleep much at daycare.
In the evening, Claire was trying to sleep, then she would wake up with a wail... loud (for her) cry... then fuss for 1-2 minutes and fall back to sleep.
Mom decided she was constipated and gave her a suppository after her bath. She had a good bm when mom went to give it to her and settled down, and mom gave her some Advil in case it was something else, along with some gas medicine to cover all bases. Claire really needed some sleep, and it wouldn't hurt mom any to get some too.
was up about 3 times during the night. Mom kept giving her pedialyte
and she would go back to sleep. Dad wanted to know what the
problem was, as she had been sleeping during the previous nights,
and mom happily said, 'She is back to her old self'. They chuckled.
Claire went to daycare today. Mom told her caregiver that she was going to have a fun day with Claire today.
Claire had a fun day and ate a lot. She played most of the day and only took a 30 minute nap the entire day.
In the evening, same thing. No napping, just wanting to eat and look around, then eat s'more. As she was fussing for another bottle, her sister decided to have a 'melt-down' after getting in trouble for grunting at her dad. She was in time-out crying loudly (as Claire fussed) and then her brother was 'dragging' around not doing what he was suppose to be doing... just 'lollygagging' and forgot to mention the homework he needed to do until around 7pm (and, needless to say, mom and dad forgot to ask). So he crashed-and-burned around 8pm... that means every little thing upset him... mom just got dinner ready and sent the kids straight to bed after bath, dinner and a little dessert... they had a big weekend and are still recovering.
After her brother and sister were in bed, Claire got her bath and her mommy time. Dad had gone to a basketball game.
Then mom fed Claire and put her to bed and mom followed around 10:30pm. She slept maybe 15-30 minutes until Dad got home, but he was so swamped with chores himself, so mom got up to get Claire, and she doesn't recall going back to sleep more than 15-30 minute increments the entire night.
stayed up until about midnight, when she decided that not much
was going on around her and sleep would be nice. She slept until
9am, which was nice for mom and dad. She was so good for dad
for his 40th birthday, and appears to be stabilized with her
apnea/seizures. She had a lot of alert hours, but not much sleep.
She was awake for much of the day until about 6pm, she finally took a small nap. Mom woke her at 9pm to give her a bath, but Claire wasn't too interested in staying awake for that, and she drank more formula/cereal/bananas, fussed some, and after some pedialyte decided to rest on mom, then off to her bed, which tonight is still set up in mom and dad's room.
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