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Claire's Journal -- Nineteenth Month
December 13  

Claire was up until 2am this morning. Dad was generous enough to stay up with her and mom was most appreciative. He said the only reason he thinks that she finally went to sleep was because she was just worn out.
She woke up this morning by herself and mom gave her meds and a bath, then took her to work for a short while to keep her away as Claire had a hearing test today and needed sleep deprivation so she could sleep during the test.
As usual, Claire has boggled the Audiologist who doesn't understand Claire's test results... so mom is still wondering just what is going on with Claire and her hearing. Unfortuately, the new ear mold isn't in, the one Claire has now she has outgrown, but still uses as every little bit helps.
Mom took Claire to her daycare afterwards and got a bite to eat on her way back to work.

December 12  

Claire had a pretty good weekend.
She partied on Saturday night with friends and saw the Christmas tree go up on Friday. She loved the lights and sat and processed them for a good long time.
Mom is very excited for her and her sibs, as Christmas should be a lot of fun this year, they are at such great ages to experience Christmas through different phases. At 10, Claire's older brother is still pondering the deep questions about whether Santa really exists. At 5, Claire's sister is imagining everything on tv will appear under the Christmas tree on Christmas morning... and at 21 months, Claire is enjoying the lights and senses the excitement of everyone. Mom sees an increase in her smiles, just whenever a musical toy is played for her or new Christmas lights are hung.
Claire has kept mom and dad wondering each night if they will get sleep. She sleeps through the night about every 3rd night these days, and mom is analyzing everything to get her to sleep every night. Mom is wondering if it is as simple as a change in her routing... so she will be sticking very closely with the nightly routines and bedtimes - whenever humanly possible.

December 11
21 months old

Claire has only three more months to go before her 2 year birthday!! Mom will start planning after Christmas, as she expects it to be a big blow out party.

December 6  

Claire was up at 4am. Mom was guessing she was just hungry, so she fixed a bottle and they both got back to sleep around 5am. Claire drank about 3oz.
In the morning, mom got ready for work and woke Claire only to change her and wisk her out the door. She drank about 2oz in the morning and at daycare had another 5oz.
Mom picked her up at 1pm for OT and then took her back to daycare. Mom was a bit frustrated since the appts she is getting are kind of out-of-routine. Mom would love to make the appts for PT and OT a month or two in advance, and have them back to back -- but since the referrals are approved at the last minute (only once the previous one is about to, or has, run out) and only for one month at a time, mom cannot get appts without a valid referral. If she makes them, they are erased. When they are erased, the appts need to be rescheduled and mom has to confirm before each appt as it is time consuming to leave work, get Claire, and get to appt, and she wouldn't want to show up only to find it was an older appt that she had written down, but that had been erased.
So mom has some appts at 5pm, some at 1pm... and different therapists with each appt... when she can get them. For instance, she was only able to get one OT and one PT appt this week. And the OT was with a therapist who had never seen Claire, so much of the appt was them getting to know each other... if it were her usual OT, mom thinks even more would have gotten accomplished... but at the same time, the new OT was a wonderful woman and Claire really liked meeting her - Claire smiled for her a lot today. Mom definitely thinks ALL the therapists at Claire's rehab office are excellent.
Mom would like the consistency of one Occupational therapist and one Physical therapist each time (dreaming!), and she would like to make the appts far enough in advance (as she did when she got her referral for 3 months) that they aren't all taken, esp since 30 min appts don't seem to get much accomplished (and the copay isn't small, but the same if it is 30 min or 45 min)... but the bureacracy of the insurance and rehab system is keeping her from any normalicy in Claire's scheduling, it wastes time and keeps mom's planning off balanced making it easy to miss an appointment here or there. arg. This may seem so insignificant to some people, but to mom, it is so frustrating not to get appts made early, and even more frustrating to call to find all future appts had been cancelled for lack of referral, which is coming, etc. Why can't they let her schedule in advance of a referral being approved... and why can't they approve one for 6 months instead of one month at a time? (Stepping down from soap box... whew).

December 5  

Claire was up until after 3am. Dad put her down around 2am and mom took over after that. She was crying and crying and while it is probably very good for her lungs, mom wants her to be comfortable. Dad mentioned he'd given her some mylacon, so that wasn't an option for mom. She fixed her a nice bottle and they snuggled together on the daybed in Claire's room and mom fed Claire. It calmed her down and eventually she was able to get back to sleep. Still no ideas what her little problem was, but something was surely bothering her.
Mom insisted they get a new prescription for Claire's meds today. And after church, they did. Mom poured half the bottle into another bottle from a previous prescription and will draw dosages from that, incase somehow the bottles get contaminated with use. Another theory of mom... perhaps too much time on her hands --- yeah right!
Claire had a nice relaxing day, she fell asleep in church and continued sleeping most of the afternoon. When she woke up, she took her meds, from the new prescription, and had a fun day hanging out with the kids. Later, she went to a birthday party that her sister was invited to at a popular pizza party place. Mom took Claire, her brother and sister and dad met them later at the party. It was a nice evening, and once home the kids got ready for bed. Claire's brother turned on the Green Bay game and noticed they were down about 35-0, and he turned it back off again. Mom laughed and he turned it back on and watched with hope that Favre would pull off a win, only to watch him pulled out of the game... another blow. Not being in a good mood, he quietly took his bath and went up to bed. Claire went to bed around 10pm too, but only after fussing and her random cries. Mom is hoping for a good night.

December 4  

Friday was a typical day. Claire is starting to do her 'random' cry thing where she will be laying still and seemingly content and then 'jump' and start crying. Mom thinks it is time for a new prescription... and orders it.

December 3  

Claire had a terrific night.
Mom did too!
She was up bright and early, dad gave her meds after mom gave her a hair cut. Afterwards she had a wonderful warm bath and off to daycare. Oh yeah, she drank 6oz this morning before going to daycare, and her caregiver is taking her to see Santa today... along with 3 other little ones. Claire's buds, all going on a field trip to see Santa. Doesn't get much better than that. And with her new hair-do too!
Claire missed seeing Santa, but mom will take her a little later, once the kids get their lists made.
Dad opted to take the family out to dinner tonight, so it was steak for everyone... well... not everyone, only in this family can you go to a steak house and Claire's sister orders mac and cheese and Claire's brother gets a hot dot (substituting his side order for a Ceasar salad). Mom discovered the flatiron steak. Yum!
Afterwards it was frozen yogurt for everyone and then home.

December 2  

Claire had a terrific night. She had a fun day too, going to daycare and playing with mom in the evening. The family went out to dinner and Claire drank most of her her 9oz bottle. Then at home, mom ate her ice cream and fed Claire with her free hand, then Claire decided she didn't want to eat anymore, she was full. She layed in mom's lap and fell asleep. When mom went to put her in her bassinet, she didn't even open her eyes, much less put her thumb in her mouth. She was a very tired and full little baire. She had about 20 oz today.
Mom is noticing her winter wardrobe is a little small, so she needs to dig out the hand-me-downs from Claire's big sis and see what will fit this little-getting-bigger Peanut.

December 1  

Claire a good night. Mom was pleased, she needed the rest.
Claire had few appts today, so she just took it easy, eating a bunch and enjoying her Music Therapy. Claire drank about 25 oz today.
Mom finally found time to play with her new digital camera. It's her early Christmas gift from dad, who knew she'd need a little time to get used to it before the holidays came around. She needs a little more practice before she's a film producer, or keeps people from getting sea-sick when they watch the videos, so take some dramamine and sit back for Claire Premaire.... here's a few videos for your veiwing pleasure:

Video 1
Video 2
(warming up for her first opera) dialup   
Video 3
(bath & smiles) dialup
Video 4 (music therapy)
Video 5
(Red Dog)

To See the video, you may have to download Quicktime from apple.com (free).
For dialup connections, you will need to download RealPlayer 10 (free). The quality isn't as nice.
Please send your feedback to Claire if you have problems seeing the video, they take too long to download, or you didn't have problems at all... this way she can determine if she will post more.

November 29  

Claire was up until about 1:30am. Crying.
Mom suspected a bad tummy ache and gave her some mylacon, hoping it would help, but it didn't. She gave Claire some tylenol also, just in case it was teeth, or something mom didn't understand.
Dad woke Claire up around 9am, for meds and breakfast. He took her to get her flu shot, and then to daycare. Later he got her for her PT, she had a good day, then took her back to daycare.
Mom picked her up from daycare after work and Claire finished the 3oz she had in her bottle. Mom made dinner, helped the kids with homework and fixed dad's Palm (PDA) and talked with grandpa on the Internet during all that. She was busy. Dad fed Claire and she drank about 6oz more before going to sleep. Mom gave her meds early tonight, as she had a jump-then-cry episode, usually a prelude to a seizure, so she thought she'd better give her the early dose and call to order new meds soon. Claire was asleep in her swing about 9pm, guess watching mom on the the puter wasn't exciting enough for her. Mom put her in her bassinet in her room and will wait and see how the peanut does tonight.

November 28  

Claire had a nice Thanksgiving.
She travels so very well, and she enjoyed visiting Grandma and Grandpa and all her relatives. She recieved lots of attention, and sometimes, none at all... which is also nice sometimes. She slept most nights and averaged about 20oz per day.
She battled constipation and still kept her nasty, loose cough, but all in all, a fun holiday!

November 23  

Claire slept well last night.
Her sister did too, but continually coughing today. Mom had given Claire's sister cough medicine and decongestant last night and this morning she has a mild fever of 100.
Claire still has her stuffy and runny nose, but drinking well and had 5oz of shake for breakfast. For lunch, she will get shakes without formula, just fruit, pedialyte and barley, to help curb the congestion... and a bath, she's not had one in over a day or so as mom doesn't want her to catch a chill... but will crank up the heat in the house if she has to.
Mom called the drs office to see if the girls needed to be seen. There are no appts left today and they close tonight for the holidays, so they said they could go to the urgent care center. Since it seems like Claire's sis has only a cold, and Claire will be seen by her hospice nurse today, mom will play it all by ear to see if the girls need to go in. The drs office said that hospice should call them if Claire needs anything. At least the kids won't miss school. And mom is still working from home.

November 22  

Claire slept great last night. The past couple nights, mom has put her on her side and she rolls over onto her back and sleeps hard. Mom also noticed that lately she hasn't been snoring. That's kinda neat.
Claire woke up this morning with a runny nose. Mom gave her some decongestant, as she didn't want to eat. Looks like she may be getting a little cold. She will need lots of rest to get better by Thanksgiving. Afterall, there's just too much fun to be had when family comes together!
Claire had fallen asleep around 6pm, but up again at 9pm and mom gave her meds then.
Claire's big sister was watching tv and almost fell asleep, around 5:30pm. So mom let her have a bowl of cereal for dinner and got her off to bed. She was asleep by 6:30pm and had a fever by 10pm of 101. Mom gave sis some tylenol and dad went up to sleep with her for most of the night.
Meanwhile, Claire didn't want to be outdone with attention, so she developed 102 temp, along with her nasty runny nose. Mom cleaned her up and gave her tylenol, along with her regular meds and a decongestant and Claire ate relatively well.

November 21  

Claire was up for church. Mom gave her a quickl sponge bath and picked out a cute outfit for her to wear. She was asleep the first half of mass, and drank a few oz, then Grandma held her and she fell asleep. She slept all through breakfast and then she slept for much of the afternoon. Mom fed her more when mom got up from her nap, it was a long night last night with the late football game yesterday and lots of family and friends visiting.

November 20  

Claire slept well through the night, and she knew she'd need her rest because there was big fun in store all day today. Lots of friends and family over for lunch and a fun football game in the evening. Claire didn't get to go, but didn't even notice as she was asleep by 10pm, but up again around 1am, as everyone was stumbling in from the football game. Claire's team lost, sad, but next year will be better for them... and Claire may have a few more team outfits by then too! She's thinking of burning the ones she has, as they didn't yeild wins like she was hoping for.

November 19  

Claire was up only once with a cry, but quickly went back to sleep before mom even got out of bed, around 4:30am.
Mom woke her, she was in snore-mode, for her meds and for breakfast. Once she finished about 7oz, mom gave her a bath and then off to daycare.
Grandma and Grandpa are coming for a visit, with a couple aunts, and the kids are more than excited!

November 18  

Claire had a great day and a great night. She didn't drink more than about 23oz today, but was a very good baby with lots of smiles today.
She had her RSV shot today, so mom picked her up early for that and soon after they were home with the kids and dad for a nice relaxing evening of grilled cheese, tomato soup and nutter putter cookies for dessert.

November 17  

Claire had about 30 oz today. She enjoyed a nice Wednesday tho her PT appt was cancelled, due to insurance problems. Evidently, Claire ran out of visits before the referal period ended. They gave her 8 visits for 2 months, but she goes to PT twice a week, so it was inevitable. Mom only found out just before the visit as the PT called to tell her she was out of visits. Mom spent the next 35 minutes on the phone (34 of it on hold) trying to get everything squared away. Of course, by the time it was resolved, the appointment time had ended, so Claire couldn't go, but it was time for her OT, and they made it there a couple minutes late. She hasn't had OT as often, so she still had a few visits left, but with the new increase in visits, things were looking good. Mom had to call the insurance back during Claire's OT visit to remind them to fax the new referal to the Rehab office. Once it came, she was able to reschedule Claire for that afternoon.
After OT, they had about 45 minutes to burn, so they went home and mom got some email responses out and then back for PT. After PT, Claire enjoyed Music therapy and her hospice coordinator came by for a visit too. Then the kids came home and dinner and baths.
Claire had a nice bath and went to sleep like a charm after her bottle.

November 16  

Claire had a great day. She seemed to not be able to drink enough all day. Mom is going to have to make the shakes a little thicker to keep her appetite in check (never thought we'd be saying that!).
Claire drank 32oz of shake today. Must be a new Claire Baire record!

November 15   Claire slept through the rest of the night after waking up at midnight. She was hungry and mom fed her about an oz before she looked too tired and uninterested. So mom put her back in her bed and she eventually, quietly fell asleep.
Mom woke her in the morning, and she wasn't sweaty as she usually is. A nice 6oz bottle with vitamins and change of diaper and Claire was soon off to daycare. Claire fell asleep before leaving and once she hit the cool air outside, mom thought for sure she'd wake up, but no, she continued to sleep until she reached daycare and was just fighting to wake up, she opened her eyes a bit while mom took her from her carseat and put her in a playpen in a dark room at daycare so she could go back to sleep. She appreciated that.
November 14   Claire slept pretty well during the night, and she was in a good mood in the morning as she usually is. After meds and a bottle, she was off to church and she was awake for the full mass. Still full of smiles and finishing off her bottle. When she got home, she drank more, this time, formula/ped, and drank about 4oz before mom put her on the floor on her side. She seemed disinterested in the food, but still awake. After a quick visit to the fabric store, they were soon home again and mom fed Claire some and they did some bicycles with Claire's legs and then mom worked on Claire's sister's indian costume while Claire hung out in her swing by mom, and eventually fell asleep.
She was up later, hungry and had another bottle and bath. Then off to sleep.
She had 16oz of shake today, and 4oz of ped/formula. If she stayed awake longer, she probably could have eaten more, but lately, when Claire decides she's tired, it is difficult to wake her (short of turning the ceiling fan on high and taking off her socks, but that's kind of a rude way to wake her and that is mom's last resort).
Claire was in bed and sleeping by 10pm.
November 13   Claire had a lazy day. She was up drinking her 8oz of shake fairly early, then just hanging out in her swing part of the day and her boppy pillow part of the day and her side on the floor watching tv part of the day. Mom had some sewing to do, and dad fed Claire two more 8 oz bottles later in the day.
She had over 24oz for the day.
November 12   Claire slept through the night but was up at 5am and hungry. Mom gave her meds and fed her 4oz and put her back to bed, she was tired and full. Mom woke her again for a sponge bath as Claire was sweaty from sleeping, and then off to daycare, she downed another 4oz before she got there, finishing off the last few drops when she arrived. She's showing no signs of seizures and her appetite has picked up. Mom is thinking it is the new meds bottle.
But mom knows that all Claire's problems seem small when there are more heart-wrenching things going on in the world. One of them close to mom's heart is the passing of Baby Luke, the little boy who's mom went to court to help him thrive.
November 11
20 months
  Claire was up much of the night, finally settling down around 2am. Mom isn't too sure what the problem is, but hoping that changing to the new meds bottle will help her out some.
Mom got a call that Claire's PT was cancelled (after it was changed to today from Wednesday). Her PT was out sick. Then a call about her OT appt today. Seems the Insurance company never recieved info to 're-up' her therapy from the ped office. sad. So now Claire had to have her appts cancelled until everything is approved. And there is now a chance that it may not be, so fingers crossed.
She had a nice relaxing day, waking up for her morning shake and then going back to sleep. She slept for a couple hours in the morning, then mom woke her to drink more and play. Mom tried to keep her up most of the evening, but by 8pm, she was passed out on mom's chest. Who could blame her, the only football game on was very slow, two very good defenses, but little or no scoring. Mom enjoyed the second half, and Claire was fast asleep in her own bed by then. Dad had to watch the game in the family room, as the team did much better when he was out there. Too funny. Ol' dad can be supersticious sometimes.
Mom was in bed before midnight. Dad followed in sometime afterwards.
November 10   Claire was fussy, and mom is thinking that with her random cries, it is time to get a new prescriptions (even tho there is almos 1/4 of the bottle left). In the morning, Claire looked like she had a mild seizure. Dad picked it up today, so tonight she will get her first 'new' dosage and hopefully everything will be back to normal. She had her hospice nurse come by with the scale, and Claire weighed in at a mere 12lbs 10oz. A weight loss from her last weigh-in. She hadn't been eating too well lately, and on a good day, she has 18oz, but was throwing up some, so mom is really hoping the new bottle will bring her back to par.
November 9   Claire slept through the night. She had a terrific morning, all smiles for mom!
November 8   Claire slept through the night. She went to daycare and had a PT and OT appt today and worked very hard. Especially at PT as she worked her legs and did lots of rolling over while aided by the therapist. In the evening she ate really well and was the perfect baby, taking her meds, finishing up the end of her bottle and falling right to sleep after laying in mom's arms for only a few minutes. Mom put her down and she was so exhausted she hardly moved.
November 5   Claire was up once with dad and he didn't say anything about her being up too long, so it must have been just her fussing and wanting to be held.
November 4   Claire was up once during the night. She seemed hungry, and she drank about an oz or two and went back to sleep.
Mom woke her for meds and breakfast. She has been in a terrific mood all day long, including her daycare. She had about 6oz in the morning with mom, and another 13 at daycare. At home, she drank about 2oz at the end of a bottle, then another 4oz before falling asleep on the couch. Mom woke her for her evening meds and held her for a while while she went back to sleep. She was in bed around 10pm, and mom was too. About 25oz today, all shake, lots of calories!
November 3   Mom was so happy Claire slept through the night... but mom was up off and on, checking the election results, and then rolling over and going right back to sleep.
In the morning, it appears that George W. Bush had won, but until the final speeches were given, no one was making that announcement. Mom said no matter who won, she was hoping for a landslide so it wouldn't be days of unrest until the winner was determined.
Claire had a hearing appt today to check her aid out, and the humming seemed to have stopped, so she wore her aid most of the day... good thing too, since she had music therapy. She had PT before music and Mom, Dad, Therapist and Claire were able to check out the two chairs, the KidKart and the Kimbra Spring to see which would work best for Claire. It seems unanimous that the Kimbra was the better chair, so the Therapist will write up a new justification and hopefully it will be approved by insurance and Claire will be fitted. (fingers crossed). Claire was on top of her game today at PT, very alert and working very hard on her legs and neck.
Claire was a bit tired in the morning, probably from her morning bath, but she was awake in the afternoon and being a sweet little peanut!
November 2   By 3am, the two of them had come back into the room. Evidently, they'd both fallen asleep watching tv, and Claire actually stayed asleep for mom. When mom got up, she got the kids ready and woke dad at the very last second so he could put on a baseball cap and hop in the car to take the kids to school while mom got Claire up and ready and she got dressed for work.
Hmmm... if I could vote... ?Mom took Claire to vote, Dad met them. Claire got her own "I voted" sticker, but they wouldn't let her vote... She was disenfranchised, they said something about her age, but she was defiant as she knew she looked younger than she really was. She's still trying to figure out a way to work the system, afterall, she was up for all the debates, she knows the issues... she just wants a toddler's voice to be heard. Mom is still trying to figure out why folks vote early. There were very long lines all week for people to vote early, but on election day, there was no lines no waiting. Claire even sat on the table in her carseat right next to mom as mom voted.
Claire went to daycare and, after drinking 5oz of ped/juice for mom in the morning, she had another 13oz of shake at daycare. At home she drank the rest of a 4oz bottle, then another 8oz all before going to bed. Mom fixed another 3oz bottle, wondering where Claire would put it, as she seemed full, but still hands in her mouth. She put Claire in her bed while she fixed the bottle, and within 3 minutes, she was back to get Claire, who had fallen asleep. She slept through the night!
November 1

Claire was up pretty much all night. She finally started to doze off at 2am, but then woke up crying. Mom was exhausted and getting frantic as she'd already given Claire mylacon for gas and tylenol for teeth. Claire was so unhappy. Mom woke dad up, she figured he'd gotten enough sleep by then, and asked him to take over. He very sweetly acknowledged that she needed a break and let her get some rest.
Mom woke up in the morning and Claire had been sleeping since her dad had worked his magic. All mom knew was that 3 hours of sleep was better than none and she had a big meeting that afternoon and needed to get ready for Claire's Ped Orthopedic appt.
The appt went well. They took xrays of Claire's spine and neck and saw nothing wrong aside from the twisting. The dr said it could all work itself out (straighten itself out) as she grew, but thought that a second opinion would be in order. So he suggested a visit to Shands Children's hospital. Mom needed to make an appt with the geneticist there too, so it could be a two-bird-one-stone thing. He reiterated that seating would be beneficial and mom said that it was in the works.
After the appt, mom went over to see the new Kimba Spring chair that had come in and compare it to the KidKart to see if she liked one over the other. The Kimbra seemed a bit lighter -- both were very heavy and mom was wondering how she would manange this 'stroller' without quite a few visits to the gym to work out... *QUITE* a few... heheheh!
Mom got to work and got to her meeting on time. Then back to work to get some new ideas rolling.
Mom took Claire back home and dad watched her until he took her to her PT appt. Then he took her to daycare were she was about 2 hours and 5oz later and mom brought her home after a long day at work. At home, Claire didn't drink much and mom put her on the couch with a bunch of toys. Evidently, she wasn't too impressed with mom's selection of toys, as mom came back to check on her after starting dinner only to find she fell asleep sitting up.
Mom thought they might be in for a long night, so she got Claire to bed a little earlier than usual (including meds a little earlier) and went to bed herself. Sure enough, the little peanut was up about 11pm and dad came to get her.

I'm a bear!!  Hear me roar!         Like my paws?
October 31

Aren't I cute?It was a busy day, and after church, Claire's sister took a nap and her brother watched football and played in the yard. Claire had a fun Halloween day. She dressed as little blue bear and was cute and cuddly as her usual self. Her sister was Cinderella and her brother was the Grim Reeper... boys will be boys. The kids had fun dressing up and they went to a retirement home, then off to visit friends and hit the busy neighborhood for lots of candy. Pictures coming soon.

October 30

Claire had a pretty good night. She just hung out all day on the couch... eating and playing with the kids. Mom spent much of the day cutting out a dress for Claire's sister, and fixing a costume for Claire's brother. They all watched the big football game and were very disappointed with the outcome. Oh well, just a game.(x-large pix). Claire did have a good photoshoot while enjoying the game. She was decked out in her football 'garb'.

    Time for the game!Ready for the big game!
MOM!!  What did you do to my hair?   It's sticking straight up... did Grandma have something to do with this?
October 29

My cool hat!Claire was up until after 1am. She settled down several times, but then let out a fuss and started crying. Mom started by feeding her, but after a couple oz she seemed disinterested.... mom put her down... Claire started fussing... mom picked her up... tried feeding again... Claire drank a little... mom put her down... Finally, mom tried Tylenol. Claire had her hands in her mouth a lot and with that new tooth, the droolling and the basic overall pitiful look, mom is thinking it would help her out a little, and maybe everyone could sleep. By 1am, Claire was still not happy, and her cries were just as pitiful, so mom gave her some Mylacon. Mom also noticed a very firm BM in Claire's diaper, so perhaps she was also working on that. Shortly after the Mylacon, Claire settled down and finally stayed that way. Good thing too, as mom was running out of 'tricks'.
Claire slept until mom woke her in the morning. She got her antibiotic, seizure med, decongestant and then finally her bottle. Of course mom took some pix along the way. A face cleaning and a cute outfit later and Claire was off to daycare and mom to work.

October 28

Claire's treatmentsClaire was pretty tired today. She woke up to find the Red Sox did win the World Series. Dad was really happy, but nothing compared to Claire's brother bouncing off the walls. Claire is hoping that dad's taping of the final game went well.
Mom gave Claire her nebulizer treatment, since she didn't get one last night (the Peanut was just too tired).
It was her first day back to daycare and mom was glad to be going back to the office. Mom started her off with 3oz of Juice and pedialyte and then she finished 9oz of shake at her daycare. At home, she drank another 8oz, but never seemed to be full, but very tired. Mom gave her an evening nebulizer treatment and fed her a little more then put her in her bassinet around 10:30pm.

Where we goin' mom!?   Can't wait to get going!!
October 27

Claire was up at 4am, appearing hungry. Mom was certain that if she fixed a bottle, Claire would be back to sleep before she was done fixing it, so she got up and checked on her in about 2 minutes and Claire was back asleep, no bottle.
By 6:30am, mom was up helping dad get the kids off to school and Claire was just waking up for bottle and meds. After she drank, mom cuddled with her and she fell back asleep in her arms, so mom put her back down for a morning nap.
Claire was up around 11am for her bath, then PT and OT, and home for Music Therapy (MT). She was very vocal and energetic all morning and her PT was very impressed. She had some nice loose coughs and even coughed up a little phlem, so they are finally getting more productive. After MT, mom tried giving her her antibiotic, but she had just finished a bottle, so she didn't want anymore to 'eat' and pushed it out with her tongue. Shortly afterwards, her hospice nurse came by to check up on her and she had fallen asleep (MT is very relaxing), so her nurse had lots of cuddle time with her and weighed her in at 13lbs 3oz. Her nurse said that mom should continue the nebulizer treatments at least two more nights and that the antibiotic will really make a difference by tomorrow. She will check back in on Claire on Friday so she can leave a note for the on-call nurse at hospice. She said Claire was sounding much better already, and not losing weight, she looked good, good color too.
Claire fell back asleep after her nurse's visit, in her boppy pillow. Mom will let her sleep for a while, she had a long, busy day.
Mom was able to make a little side trip today while dad watched Claire and mom picked up some fabric. Claire's sister wants to be a Disney Princess for Halloween, and mom got some fabric for Sleeping Beauty (plan B will be Cinderella, as she already has that dress). Claire's brother wants to be the Grim Reeper, so mom just needed a ton of black fabric... the challenge there was getting it for a good price, not a problem. Mom will be very busy on Saturday getting costumes ready for the big night. Claire's brother has testing starting on Monday after Halloween night, so there's a real challenge there. Probably a Sunday afternoon nap will be involved.
In the evening, Claire was planning on staying up for the lunar eclipse and the Red Sox game. As she and mom played on the couch, mom noticed something new in Claire's mouth... a TOOTH! Her second one!!! Mom was so excited!!!
Later, mom took her out to see the moon, but her eye's started getting heavy... it was nice and dark out and not too cool, just a beautiful evening and all that fresh air was affecting her. Claire figured the Sox would be on again tomorrow night, because the odds of them sweeping the World Series (after winning 4 games in a row in the playoffs) was unheard of. Especially when they hadn't won a series in 86 years, let alone a sweep.... Claire wasn't too worried about missing out, besides, dad was taping tonight's game. Claire went to bed and went straight to sleep. Good baby. Mom followed shortly behind her.

October 26   Claire slept comfortably through the night. Mom pulled the bassinet closer to her bed so she could keep a closer eye on Claire without putting her in the bed with them. Claire still has the cannula on for extra O2, but mom has it set pretty low. Mom lowered it last night as Claire's little nose was tender and she had a slight nose bleed, likely from the oxygen, tho it goes 'through' water in the concentrator.
Claire was up at 6am and crying. Mom gave her a couple oz of food, but at first she just wanted to be snuggled and happy to be in her mommy's arms, then she decided she was hungry and ate, after her meds. She snuggled a little more afterwards and fell asleep. Mom put her in her bed and went to help dad get the kids ready for school.
Claire slept until close to 1pm. Mom felt that sleep was the only thing she really hadn't had much of in the past few days, since she's been eating so well, and thought she would need it most. At 1pm, mom pulled the covers back and she eventually woke up. She had her antibiotic and drank another 8oz of shake, the last 2 had formula in it. Mom took a shower and when she got out, Claire had fallen back to sleep. The problem is her 2pm meds, mom will have to wake the peanut for them.
Mom called the hospice nurse to double check that the dosage was what the dr prescribed. The nurse said she didn't get why the pharm couldn't read the script, since she wrote down the dosage for her records from the original script at the drs office. Okay Okay... time to change pharmacies... there is a new one going up a mile from Claire's home, mom will likely switch to that one when it is opened.
Claire had a good evening, finishing off the day with close to 22 oz. Mom put her on 'blow by' oxygen tonight and Claire had meds and fell asleep on her boppy on the couch before mom could give her her bottle. When mom moved her to bed, she woke up and nearly finished her bottle, as she fell asleep in mom's lap drinking. Mom put her to bed close to 11pm and got to bed around 11:30pm too.

October 25
13lbs 5oz!!


Claire was breathing hard at 3am. Mom got up and cleaned out her nose, gave her a decongestant and changed her position and put her back down to go to sleep. She seemed to be breathing better then.
Mom woke her up before breakfast and cleaned out her nose again (saline and nose syringe) and gave her another decongestant. Claire drank 3oz of shake and went back to sleep. She wakes up every 15 minutes or so, and then looks around and goes back to sleep. She isn't sleeping too deep.
Mom spoke with the drs office and the ped won't be in until this afternoon, so Claire has an appt with him today. She spoke with Claire's hospice nurse who said she could come by around noon, or meet them at the drs appt. Mom is hopeful an antibiotic will do the trick, but thinks that after the appt, there will be a chest xray ordered and probably a blood test to help determine the nature of what Claire has. The poor little peanut.
The drs visit went very well (mom thinks). Claire was up to 13lbs 5oz!! He listened to her and agreed her lungs were 'gunky' but said they'd been much worse before. He said that Claire could use help from a nebulizer, used for opening bronchial tubes, as she was wheezing. He wrote a prescription for that and for an antibiotic. Mom's favorite for Claire, Zithromax. It was the one that seemed to pull Claire through with every pneum (when the drs would finally give it to her). Mom is confident Claire will be on the mend soon (fingers crossed and prayers to heaven!). No bloodwork, no xrays. And that's more than fine with Claire.
Claire's hospice nurse met them at the drs appt, and helped Claire and her mom at the place where they needed to pick up the nebulizer. She's so wonderful!
Afterwards, mom picked up the kids from school and dropped off Claire's prescriptions and then home. Dad said he would go pick up the prescriptions a little later. Mom had enough solution to give Claire a nebulizer treatment shortly after they got home.
Mom fed Claire more food, this time, adding some formula so it would stick to her 'ribs' and Claire enjoyed it. Then mom and dad fixed dinner and mom put Claire back on her oxygen. She'd been off it since just before her dr appt and had very nice color the whole time.
After dinner, dad went to get the prescription, but only came home with the nebulizer solution. Mom hated to tell him there were two prescriptions and he didn't get the antibiotic, he wasn't too happy, but went out again. Shortly afterwards, mom got a call from him (couldn't be good news when hubby calls from pharmacy). Evidently, they didn't get the prescription... mom vowed she gave them both in together and dad said he'd call back. He called back and said they did get the prescription, only they didn't fill it because they couldn't read the dr's instructions, and left a message for him to call them. Well, it was late enough in the day, so odds are the dr wouldn't have gotten the message until morning. Dad was not happy, and he called mom. Supposedly, no one at the pharm knew about this until dad was there for a little while, if they knew and told him up front, he would have understood the situation. Mom asked dad (who wasn't too thrilled about waiting at the drug store) to give her just 2 minutes, she called hospice and asked them if they could help. Hopsice suggested just getting the script filled so dad could come home, and they would continue to work on what the dosage would be as the prescription was filled and brought home, then mom could give Claire the meds with the proper dosage. They offered to call in and give them a dosage. Mom told them how much Claire weighed so they could figure out the dosage. Meanwhile, at the store, the person helping dad, after communicating Claire with her oxygen on... getting better soon!with hospice, decided her shift was over and started leaving. On her way out, she passed the buck to a pharm who refused to fill the prescription, since the instructions were not legible and the drs office hadn't called back... this caught dad's ear. Poor dad. Didn't say anything... just listened to the conversation between the two. The first pharm convinced the second that she had been working to get confirmation of the dosage, and filled the second shift pharm in.
Hospice called in an approximate dosage based on what she'd gotten last spring when she was at the hospice house, so the pharm would fill the prescription, and then the pharm called mom to say the dosage didn't seem right (as this strength was higher than in the past), so they wanted to call the nurse back (they didn't know she was at hospice) and needed the number, mom gave it to them. Finally, after a very long wait on dad's part, the prescription was filled. Hospice called mom back with the correct dosage, confirmed by the drs on-call nurse, and when dad got home, mom gave Claire her antibiotic... whew.
Dad was at the pharmacy a while and used his time wisely... he was 'hanging out' with the store manager giving him a nice long story about his evening... asking, 'am I expecting too much?'... the manager kindly agreed that he wasn't... and mentioned that customer service isn't high on the list of classes at pharmacy school.
Claire took her meds and drank another 2oz (26oz for the day)before snuggling with mom and falling asleep. Mom put her back in her bassinet and covered her with a blanket. Sweet dreams little one.

October 24

Chubby handsClaire didn't seem to ever go to sleep. Mom checked on her around 1am and she was still awake but being very good. Just breathing a little hard.
She seemed tired, mom fixed her another bottle of ped/fruit/barley and she drank 4oz and mom held her for a while while she slept in mom's arms, then mom moved her to the swing for a little while and watched her doze in and out. Eventually, mom put Claire between her and dad. Claire still has a nastly loose cough but no fever.
In the morning, Mom woke Claire for meds and called hospice to have a nurse come out and listen to her. Mom bathed Claire with the oven cranked up and the kitchen doors closed to keep th warmth in the kitchen. Mom took off Claire's cannula (oxygen) and Claire enjoyed her bath, it was the first in a couple days Claire had a Chubby girl!bath as mom didn't want her to catch a chill, but decided it was time to clean that baby up. After her bath, she finished off her 7oz bottle and started another 6oz, still no formula in her diet as mom is afraid it will congest her even more. The hospice nurse came over and confirmed that her lungs sounded gunky (they usually did anyway) but mom thought there was a little 'squeek' to her breathing. They took her O2 levels and she came in at low 90's/upper 80's without the cannula on. She didn't really know what to tell mom, and mom didn't know what to ask for, so they decided to put the O2 back on Claire and continue what she's doing until tomorrow when Claire's nurse could come see her, and Claire could see her doctor.
Claire was pretty miserable in the evening. Mom thought she might want some formula, so she offered her a shake with formula in it, but Claire only drank an oz of it... so mom gave her more of the pedialyte shake. Claire had 28 oz of fluids today, so Pedialyte, some ped shakes with fruit and barley. At least her appetite is good, and it seems to be soon after a decongestant.

October 23

Claire and her birdClaire was still sick today. That cold is really getting her down, she's been more fussy than usual (tho she typically isn't fussy, so that isn't saying too much). Mom stopped giving her formula and she is on a diet of ped/fruit/barley in her shakes. She loves them. First thing this morning, mom gave her about 4oz of bananas, straight from the jar, by spoon. She couldn't eat them fast enough. She did eat really well today, considering her 'under the weather' -ness.
Sitting up pretty!Mom spent much of the day feeding her and putting her in her swing (so she'd be upright) to sleep and Claire spent much of her day eating and sleeping. She was very congested and mom gave her decongestants every 6 hours to keep her head cleared and she continued to have a very loose, very loud cough, but keeping her food down until she got her decongestant around 10pm, and that made her bring up about 1/2 oz of food. Overall, she had about 22oz for the day. She does have a good appetite, so mom's hoping it is just a cold. Mom put her to bed between mom and dad so she could keep an eye on her as she was waking up with a cry and her breathing looked a little labored. She's got an O2 cannula on tonight.

October 22

Claire slept through the night in her bassinet and was a very good baby. She would wake up with her nasty cough, it is loud and loose sounding, and she'd cry like it hurt, maybe a sore throat.
She went to daycare and mom told her caregiver that Claire was coming down with a cold. There was a child at the daycare who was getting over a cold, and evidently it was 'going around'. Topped with Claire having a flu shotSnoozin the day away on Wednesday and an RSV (upper respiratory) shot on Thursday, it seemed she was bound to get some little thing. Mom is trying not to worry, just keeping Claire's tummy full and making sure she gets lots of rest.
Claire seems to breathing fine, but given that she has a cold, mom plans on keeping her on oxygen until she feels better. She called hospice to see if the nurse could come listen to her, but her nurse wasn't in today, and they said they could send another, but mom felt that another nurse wouldn't know what Claire typically sounds like (as she typically has a gunky sound in her lungs anyway), and though that if it is just a cold, it could wait until Monday, if it gets worse, then they could send out a nurse over the weekend. Claire had about 20oz today, so she's at least eating well.

October 21

Sleepy girl, just don't take her thumb out of her mouth!Claire was up around 4am, she wasn't making any noises, but mom woke up and checked on her. Knowing she would cry if she were hungry, or chew on her hands, she was just laying there with her eyes open looking around. So mom let her stay in her bed and went back to sleep.
In the morning, Claire was fast asleep, and mom wondered just how much sleep she really got, and if she often woke up like that and was a sweet baby, hanging out and going back to sleep on her own.
She was up for meds, then 4oz of shake with vitamins and fluoride, then another 4oz of shake before heading out to daycare. She will have Music Therapy this morning at daycare, since she missed it yesterday. She will have her RSV shot later today (dad will take her) and she will meet with hospice at the end of the day (mom will meet them at home so dad can run errands). Guess mom's busy Wednesdays are spilling over to busy Thursdays for Claire, but mom has lots of help. (Thank goodness!)

October 20

Claire had a good night's sleep and was up for meds and shake (first 4oz with vitamins - yuk!).
Claire started her day off with a bath, then off to the dr's office for her check up. She weighed in at about 12 1/2 lbs and mom thought with all the BMs lately that she'd lost some weight (a heckofa way to loose weight). The dr said she could get a flu shot, so she got the first half (they divide the shots into two when it is the child's first flu shot). Last year, her sibs got the shots, but this year, the family won't be getting shots, and Claire will still be very exposed between daycare, dr's visits, sib's exposure and therapies at the pediatric rehab center. She goes back in 4 weeks for her second shot (nurse only visit) and her appts will now be every 8 weeks instead of every 6 weeks. Goo Grrl!
After dr's visit, she was off to PT where she was on her tummy on the ball again... legs outstretched and the first time she came down on her feet, she stood! Of course, she was still leaning on the ball, but using her legs like she will need to when she learns to walk. Claire needs one of those big balls at home for playtime with mom. Ideas for Santa.
After PT, Claire was home and drinking another bottle. Then mom put her in her bassinet to see if she would sleep, but no luck. She didn't sleep all morning or all afternoon. Later, after the kids school was out, Mom and Dad went to meet with one of the kids' teachers, Claire slept through the visit. It was nice meeting with the teachers and hearing all good things. Mom and dad requested the meeting to kind of keep the lines of communication open, and see how to get/keep their child on track. It was very productive... and good things are in store.
After the meeting, mom and dad went to watch Claire's sister in her afterschool dance program. And then everyone went home for dinner. It was pizza night (as every Wednesday is) and a family friend brought over the pizza. After dinner, he watched baseball with dad and held and fed Claire.
Claire kept eating and eating, she had about 22oz for the day, and ended with about 12 of those oz in a 2hour period at night. Mom decided to just put her down, even tho she didn't seem too tired, because she wanted her little tummy to settle down and didn't want to see any of Claire's food for the second time. Claire eventually went to sleep, tho she really wanted to stay up for the entire game (7th game of the American League Playoff Series) Dad was cheering on Boston, and mom decided the game would go too long for her to watch, and she'd just get the score in the morning. Besides if Boston lost after all they'd been through, she didn't want to hear what dad had to say... it couldn't be good. Once Claire was settled in - half asleep as her eyes were getting heavy, around 10pm, mom followed right behind.

October 19

Claire was sleeping through the night.
She had a banner day as she drank 6oz of formula/ped in the morning, and at daycare she had another 10oz. At home, she polished off the bottle with another 2 1/2 oz in it, and then another 4oz of shake. Later in the evening she drank 5 more oz and fell asleep. That is roughly 27oz for the day... Go Claire!

October 18

Claire was up at 3am. She seemed like she could be hungry(hands in mouth), but before mom got her bottle ready, she had thrown up. Mom thinks she just had her hands in there too far. Dad cleaned up the bassinet while mom cleaned up Claire and offered her some shake. She didn't seem interested, but still seemed hungry and mom realized she was congested... probably just the thing that woke her up to begin with. Mom gave her a decongestant and held her for a while and she looked very tired, so mom put her back to bed.
In the morning, mom woke her for meds and breakfast. Mom gave her fluids to help with congestion and constipation, then off to daycare. Claire drank 4oz of formula with ped mixed in for added flavor.

October 17

Claire slept through the night.
Mom and Claire slept in a little longer than usual, and mom woke Claire for meds and bottle. Mom was planning on bathing Claire for church, but time got too short and Dad's cousins were still in town, so he opted to stay home with Claire. Good thing too, as he was able to give her some time and she drank 6oz with him. When mom got home it was a good time had by Claire as she finally got her bath, and she loved it!
Lately, Claire has had a blister looking sore on her heal. It is puzzling mom as the only thing Claire is close to that is 'hard' is her carseat. Mom put some neosporin and a bandaid on it and a sock.
She hung out at home all day, from boppy pillow, to someone holding her and back and forth. She took a nice nap after grandma arrived and wanted to play, but mom realized after a couple hours that Claire needed to wake up, and also that it was pretty warm, so she opened the windows and turned on the attic fan, and soon it was cool, and Claire was up. She had socks on and a one-sie outfit.
Claire took her meds in a timely manner and was asleep by 9:30pm, and mom followed her. It was a long, fun weekend. Claire drank about 18oz of shake today.

October 16

Claire slept through the night.
She was up early and mom was feeding her and getting her ready for a bath. She enjoyed a nice cool morning at her brother's flag football game, then home so mom could bake some yummy brownies, cookies and finish off the chilli for post game. It would likely be too late to have it then, but you can always reheat chilli!
In the afternoon, dad's cousins arrived for the game. Everyone had chilli and then off to the big game... number 7 vs number 6! After a terrific game, and getting home close to midnight, everyone was exhausted and ate sandwiches and crashed and burned, including Claire. She was up when mom got home and mom fed her more of her bottle and she fell asleep quickly in her bed. She had close to 20oz of shake today.

October 15

Pretty girl - Big eyesClaire slept through the night. She made a few noises, and at one time it sounded like she hit her 'cup' that the O2 comes through... she will do that sometimes if it is in her face... but when mom checked on her, she appeared sound asleep. Around 3am, a thunderstorm was passing through and woke mom up, but she had little trouble going back to sleep.
Claire's sibs are off today, and dad has been so gracious as to watch them. They are old enough that they can entertain themselves and he can get work done, so mom can get to work. Claire was up for her usual med and breakfast. Mom put her vitamins in her shake... they are nasty smelling and probably not too great tasting either, but she downed them quickly in 3oz of shake... mom as pleased. It was only the second time mom had given them to her, but it will be a morning ritual now. They have fluoride, in them to help Claire's 'tooth' grow strong... and of course, the additional teeth hiding just under the gums.
Claire was at daycare for a short while when mom had to come and get her for PT. Today, she played with a few toys... she gripped them and then kinda zoned out... the therapist said it looked like she was thinking about how the toy felt in her hands. She also layed her on a very large ball and straightened out her legs... Claire kept flexing her knees and hips,Happy Grrl! but eventually kept them straight long enough so the therapist could roll the ball around and Claire put her feet on the floor and stood there for a minute or two. Mom was so very fascinated!! It looked like Claire had all the 'tools' to stand, just needed more muscle tone. It was very cool for mom to see Claire stand as she continued to lay against the ball. The therapist also put Claire on her leg in a 90/90 position (sitting upright) and then leaned her head over her knees and toes... then lifted her up by her bum (about an inch or two) and let her come down with a bounce. The therapist telling her all the while how fun it was... and when she stopped, Claire looked at her and started to talk to her. Claire had a peculiar look on her face. The therapist looked at Claire and said, 'do you want me to continue? Is that why you are looking at me like that and talking?'... so she continued, only to have Claire use her own legs to lift bum up and the therapist guided her... and the therapist looked up with the biggest eyes!! She was amazed at what Claire had done and mom was too!
Mom took Claire back to daycare and showed Claire's caregiver how to help her 'bounce', and mom went back to work. Meanwhile, Grandma and Grandpa were comin into town for the big game!! Yeah!

October 14

Claire slept right through the night. She had a pretty good day today, probably close to 19 oz for the day. In the evening, mom got an email from the hospice nurse with the results from the med levels... she is about a 6, where normal is between 4 and 10, so Claire's in a good range and her meds won't have to be increased any time soon. Mom is very pleased, esp with the weight gain, to not have to increase the dosage is great.
Mom gave Claire a haircut today and a bath. The Claire Haire was getting a bit unruly, and mom took matters into her own hands. She thinks it looks pretty good and Claire thinks the jury is till out on that.
In the evening, Claire relaxed, had her bottle and hung out with mom doing exercises. Mom had her little legs doing bicycles and stretches, then her arms, even her hips and Claire was all smiles... she loves the stretches! Mom could see her little heart pounding and her breathing heavier, as if she had been running, so it was time for a little break from the stretches, and evidently, the cardio workout.
Claire was in bed by 9pm, mom gave her her meds early so everyone could get some much needed rest.

    Please keep Baby Luke Winston-Jones and his mom in your prayers. He has Trisomy 18 like Claire. Read more about him.
Keep Baby Charlotte Wyatt in your prayers too. She was, born weighing just one pound with serious heart and lung problems. The courts have ruled that she will be allowed to die in a case similar to Baby Luke's.
While these are very hard decisions for doctors and courts, nothing runs deeper than a mother's love for her child.
To send an email of support, you can visit Luke's page.
October 13

Snoozin... life is so good.Claire slept right through the night and not showing signs of seizures or fever. She is eating better and appears to be back to her old self. She's been a little more tired, but hopefully more and more food will help that.
She had a busy day, starting with PT and OT. She fell asleep after PT, so was useless during OT. She came home and was still asleep for Music Therapy, and after that, off to the eye dr appt.
The eye dr said she had a condition that makes her eyes 'jiggle' (not the technical term of course). Mom asked him to write it down and it will be posted. She said she wanted to look it up and the dr cautioned her that looking this up may be upsetting as it can be very serious, tho some people with it can get a driver's license and see fine. Mom said she was aware of misleading websites and would proceed with caution... mom doesn't feel like she needed to avoid looking it up and reminded him that she's had much worse news in the past and could handle whatever was on the Internet... she added that she found comfort on the Internet when she got Claire's initial prognosis before Claire was born and was able to see survivors and know that it didn't have to be the way the drs said it was. He understood.
After the dr appt, mom learned that Claire's hospice nurse was going to come out to the house, but since mom was only a few miles from the Hospice office, she popped in. It was nice seeing some of the folks there, while Claire was doing well, and when the nurse weighed Claire, she came in at 13lbs even!! A banner day!!

October 12

Claire had a great night and seems to be doing better. She ate 20 oz today, tho some was squirted into her mouth to 'kick start' her eating today.

October 11
19 months!

First tooth getting bigger... where's number two?Claire made a few noises during the night, but when mom when to check on her, she was fast asleep.
She was awake fairly early and didn't go back to sleep as her brother was leaning over and kissing her every time he would walk by her. She was warm this morning, about 101 degrees F rectally (that's 100 normally) and mom didn't think that warranted Tylenol. She soon became cool, so it may have just been that she was too warm in her bed.
She had very mild seizures throughout the morning (maybe one every 30 minutes from 8am until about 10:30 when she went down for her nap. Mom put her cannula on her to help her breath easier and gave her some Dimetapp to help her breathe and eat a little better. She didn't sound congested, but mom didn't want to take any chances that that was why she may not be eating well, and she hasn't had a decongestant in weeks... She drank about 4oz of shake... tho painfully slowly.
In the afternoon, after her nap, she woke up and had her meds... she was up around 2pm, and mom took the meds out of a new bottle, just in case it was a little stronger. If it is stronger, and she does well, she will likely start eating better and feeling better as a result. Her body temp seems to be nice and cool, so maybe her little bug has gone away. Mom is home with her all day to see that she eats well and keep an eye on that temp and the seizures...
She finished the day with about 17 oz of food.

October 10  

How did I get here?Claire had a long night. The word that mom got was that she was up until 3am, as she was at her uncle's home for a Claire weekend. He said she wasn't fussing, just awake... and so he was awake too. Evidently, the comedy channel had some really good stuff on, so Claire's uncle was entertained as he stood watch.
Mom and dad went to a brunch in the morning and went to pick up the kids. They ended staying at Claire's uncle's home for most of the rest of the day. Mom and dad were told that the kids were very well behaved. And Claire was a lot of fun. Claire had only a few oz all day, as she'd spent most of the day sleeping... and mom didn't have a problem with that, as she knew Claire had been pounding away the bottles and frequently filling diapers throughout the night.
Around 3pm, mom held Claire and she was very warm. Her temp was 102.2 rectally (101.2 normally). Since it was early, mom gave her Tylenol, knowing in 3 hours she would know if the temp spiked up again. (If it were late, she may have opted for Motrin or Advil to last longer). By evening, Claire was still cool and drinking better. She went to bed and fell asleep around 10pm.

October 9  

THE big tooth!Claire slept through the night.
The family was up early as Claire's brother had a flag football game at 8:30am, and pix before that. Mom changed Claire, gave her meds and fixed a bottle. They rushed out the door and Claire had a wonderful morning in the fresh air (it was overcast all morning and very cool) under her blanket, drinking her bottle. By the time the game was over, she finished off 7oz of shake and was ready for her nap... she fell asleep, but woke up once they got home and stayed awake for most of the day. Mom packed up the kids for their Claire weekend at her uncle's home and off they went to drop off the kids. Claire was fast asleep when they arrived and slept for the next 30 minutes or so, until she woke up hungry, and had a messy diaper.
Mom and dad were off to look at a few houses that dad had in mind for a customer or two, but only after getting ice cream. They home to shower and get dressed for dinner at Outback, and later home to watch the FSU vs Syracuse football game... it was a good game, but a little too close for mom... she called to check on the kids during the game and everyone was doing well. Evidently, Claire's cousin was going to homecoming and was getting ready. Cuz had on a beautiful gown and was wearing makeup, something that Claire's sister is very fascinated with, so Sis was so excited for her cousin. And when her date arrived, Claire's sister referred to him as the 'prince'... guess she does watch way too many Disney movies... but exciting all the same!

October 8  

Claire slept through the night.
She appears to be eating very well and resting frequently, like all good babies. Mom realized it was a Claire weekend this weekend and thought it would be really nice as they have a brunch to attend to on Sunday morning and this would help out a lot with sitter problems.

October 7  

Claire slept through the night.
She was up for meds, breakfast and a quick spongebath before heading off to daycare. She drank 5oz before leaving and another 11oz at daycare.
She had a quiet evening at home, playing with her mom and swinging in the office while mom got some work done in the evening. A nice warm bath rounded out the evening and mom put a nice big t-shirt on her before bedtime, just seemed like a comfortable thing for Claire to wear to bed and she looked so cute in a real shirt. She's really starting to fill out more, her little legs and arms are getting 'thicker' and she's been so alert and ready to play lately.

October 6  

Claire slept through the night.
Mom woke her and started her on meds and breakfast. She drank nearly a bottle and mom gave her a bath, then she finished off the 8oz. Since Claire didn't have OT or PT today, and the hospice coordinator was sick and not coming to visit, mom checked in with the nurse and MT and they said they would come later. So mom packed up Claire and took her to daycare and went to work. This, after Claire was still hungry and drank another 2oz before daycare, falling asleep on the way over.
Work has been hectic for mom lately, so she's keeping busy there, and time has really started flying by. Halloween costumes need to be made and cookies need to be baked now that the weather is getting dry, cool and breezy. Fall is such a nice time of year, so similar to spring, only with football!
Mom met Claire's hospice nurse at her daycare to get a blood level for her meds. She couldn't get it, so mom will probably meet her again tomorrow, or go to the lab. These levels need to be taken fairly frequently, esp when she has seizures, as they determine if the dosage needs to be increased, etc.
Claire drank 5oz at her daycare, and didn't really fill up a lot at home, as mom put vitamins in her formula. She is getting teeth now, but doesn't get fluoride, so her dr prescribed liquid vitamins with fluoride, and it doesn't taste all too good... well, it just stinks, so mom is certain it doesn't taste good in the least! Claire drank her vitamin filled 8oz of shake in the evening and went to sleep in mom's arms when she was done, around 9:30pm. Dad had band practice, so mom opted to crash and burn herself... falling asleep to the sounds of the oxygen concentrator and Claire's snoring. Both being very loud, but soothing to mom. Claire finished off the day with close to 23oz of shake.

October 5  

Claire slept through the night.
She's been a dream baby! Eating like she should, tho still very slowly, eating well all the same. She's been so happy and pleasant. Mom got her up this morning for meds and breakfast and was greeted with a little smile, and a messy ol' head of hair. Mom's thinking a haircut may be in order again, as the hair gets quite unruly. Claire was off to daycare, only to be picked up again for PT and OT appointments. Her 'referral' runs out this week for PT, so mom is hopeful that the HMO will renew it, if not, Claire will not get treatments until who-knows-when. Her OT treatments go for another 2 weeks, so she will at least have something for a little while longer. Mom is nervous that it won't be renewed, and Claire is making such great strides! Mom thinks that maybe her increase in eating is partly because of the therapies. It was a good day for Claire today, working on sitting up and on reaching for toys. Mom is hopeful that with the therapy, she will be able to do both one day, and maybe even bring food to her mouth to feed herself. It's a big dream of mom's, but that's how they got here... dreaming.
Mom and dad were trying to listen to the debate, but Claire was on mom's lap and noticing that mom was looking elsewhere, so she started to talk... and loud. So much so that mom had to turn up the tv, and dad was laughing. At one point she quieted down, but had her hand up in the air and was looking at it as if she just realized what she'd been putting in her mouth so often. The hand was straight up in front of her face, and she was looking at it for about 2 minutes. Then back to talking, loudly, to mom... so mom started to talk to her, and Claire was squalking back to her... and dad continued to laugh at them.

October 4  

Claire slept through the night. Whooo Hoooo!
Dad stayed home with Claire today. He's a great dad!
Mom went to work after Claire drank 8oz of shake, and when she got home with the kids, dad said Claire had another 10oz. In the evening she drank even more, finishing off with 30oz for the day!

October 3  

Claire slept through the night. Way to go Claire!
She had a banner weekend, averaging around 27oz per day! Today, she got up for church and had a nice time there, drinking 5oz. Mom would have made her more, but she'd just finished 8oz at home an hour before leaving. Dad held her towards the end of mass and mom and dad were relieved that she fell asleep, since the bottle ran out (mom could have made more, as there was some spare food in the bag). Once home, she slept for a short while and mom took a little power nap once dad got home from showing a house. In the evening, Claire's aunt and uncle came for dinner and brough steaks. It was most delicious and they had angelfood cake with strawberries and whipped topping for dessert. yum.

October 2  

bright eyesClaire slept through the night.
That's our grrl!
She was gearing up for a whirlwind day!
She went to her brother's flag football game at 8:30am and slept through most of the game. She loves that fresh air, soft breeze and cool temps. Once the family arrived home, the sitter was waiting at 10am and they were off again to a 12-noon football game, leaving Claire and her sister with the sitter.
After the game, they came home and packed for Destin, to surprise dad's cousin on his 40th birthday. A big party had been planned for months, and with the hurricane, they had to switch the beach house that was rented for the event (as the previous rental was damaged)... all that aside, the family left for the big bash and all had a great time. Claire slept through most of the party in a back bedroom, and mom woke her for her evening meds and a bottle. She ate very good in the evening, and was back to sleep on the ride back from Destin to home.

October 1  

Happy grrl!First day of the month and Claire slept through the night. A nice way to begin things off!
Mom woke Claire early for meds and to get her breakfast started. Claire drinks really well in the mornings, and it sets the tone for the whole day. If the family is rushed, and she gets only a few oz of food for her first meal or a late breakfast, she eats very poorly all day. If mom gets her up early and gets 5-7 oz in her for a real early breakfast(after her meds), then she is so very hungry all day. Mom is the same way, a big breakfast means big meals all day, while a skipped breakfast (esp if she opts for half and half with a little coffee) means an average to small lunch, but little dinner.
So, mom works on Claire's breakfast and knows that she needs to get up early to start it early and give her enough time to drink as many oz in a row as possible.there's that yummy hand again!
Since the woman never called back to confirm Claire's daycare today, and since mom has no directions (none in the phone book, none on the Internet), dad felt a little uneasy about Claire going. He also asked mom if the woman had ever seen Claire, or met her... mom said no, but still felt confident that Claire was relatively low maintenance, compared to other 'special' kids and the woman was recommended by Claire's caregiver. Dad told mom to just get to work and he would watch Claire for much of the day. He had some work to do today, and would see if the woman called, or he and mom would work something out. Claire would be very happy to spend the day with her daddy. This makes mom wonder what they will do on Monday too, and she's happy dad has such a flexible job.

September 30  

Claire slept through the night. It was very nice for mom.
She woke up for meds and breakfast, and mom gave her formula 3:2 of formula to pedialyte. She drank 5oz and was in such a great mood. Mom put her in her carseat in the family room and Claire watched each time mom went by, until mom couldn't take it anymore and HAD to go play with the peanut. She is so fun. Later, Claire went to daycare with 3-8oz bottles of shake. Mom isn't taking any chances of the little peanut running out of food... not that she has before, but she's a whopper these days and mom wants to keep it that way.
Friday (tomorrow), and Monday, Claire's caregiver will be taking 'off'. She was kind enough to give mom the number of another woman who could watch Claire. Mom called a while back when she first got the information and spoke with the woman, who was very nice. Mom tried calling the woman back today, and left a message, but hadn't heard back all day to be sure she would take Claire tomorrow, and to get directions to the woman's home.
In the evening Claire finished up 27 oz, kept it all down, and was wide awake when the first Presidential debate began. Mom was sure Claire would show interest, afterall, this election could change the next 100 years of American history! Mom was sleepy tho and didn't know if she could stay up for the mudslinging. Once the debate began, mom was wide awake and all ears, yelling at the candidates to make points and clarify plans... and Claire fell asleep. Perhaps she realized how precious sleep can be around their home.

    PT... sitting up!!PT... sitting up!!PT... pretty rattle!!
September 29  

My hospice nurse and me!PT... sitting up!!Claire slept through the night. She was ready for breakfast and drank 3-4 oz before going back to sleep. She slept until 10am, which allowed mom go get in a lot of work. Mom got her up and she was ready to eat and hang out. After finishing 4 more oz, she was off to PT and OT and then finished another 6oz and was visited by Hospice and Music Therapy. The hospice nurse said she sounded really good -- for Claire -- her lungs sounded good and 'nice grumbles' in her tummy. She also weighed in at 12lbs 11oz! A new Claire record!! Mom was so proud she was beside herself!!
In the evening, Claire continued to eat really well, putting down two more bottles of 8 oz, until the overflow valve kicked in, and about 2-3 oz came back up. Her big brother, studying for a science test, insisted mom not feed her anymore, as she seemed more than full to him, but mom got out the pedialyte. Claire was very fussy after throwing up, so mom gave her tylenol and her clear liquids and a warm tub, and finally she settled down. The two of them rocked in the rocking chair in front of the tv while dad worked, brother studied and big sister was already in bed. Brother, mom and Claire soon followed and went to bed themselves.

September 28  

Chillin' outThose yummy fingers again!Once Claire drank her 3oz and was back in bed, she slept through the night. She must have thought that 20 oz wasn't good enough to end the day on.
Grandma and Grandpa left early in the morning to get back home to their 'hot' house. Evidently, the ground on the house was 'broken' so most everything was 'hot' and would shock them, even possibly cause a fire. Once home, they had an electrician come out and cut some 'key' wires and then have to wait for the utility guys to come out and turn off the power to fix the ground. Ironically, Claire's grandparents are the only ones we know that are waiting to have power turned OFF after a hurricane... while everyone else waits to have power turned on. Needless to say, they had to turn off all the power in their home and are running on generator. Power company said it could be as late as Oct 12 until they get put back online. Meanwhile, Claire's aunt, who was suppose to be out of power for another 2 weeks, has power... yeah! They got it shortly after ordering a generator from Utah. This is all so confusing to Claire, since she was totally unaware that she had two tropical storms in the last few weeks... oh, a baby's life!
Claire had a great day and a nice evening too, finishing off at around 26oz.

September 27  

Life is fun when Grandma is around!Around 1am, the winds picked up and the electricity went off. That woke mom up. She opened her window so she could hear the storm and get some cool wind for Claire. She heard transformers blow, but not as many as the last storm and not as many police sirens either. Last time, she tried to keep the cool air in, this time she just wanted to go back to sleep and not worry about waking up hot... so the windows were cracked. The winds kept her up for another hour, and around 2:30am, opted to call the power company. She dilly-dallied around the house, looking for batteries for her weather radio so she would know if there was a tornado warning around, checking on Claire several times and checking on the kids. They were awake, so mom said they could come down and sleep on her floor... they were so excited. kids. By 3am, the power was back on. Mom turned off the tv and other lights, etc, and went back to bed. The winds were dying down so she was back asleep soon after 3:30am.
In the morning, the electricity was still on, so mom made coffee for everyone and got Claire up for meds and breakfast. The family heard from the last two members in Melbournd/Malabar area who were fine. Mom's sister in Malabar was requesting a generator, and while that will be very difficult to find, mom is on a mission. Lowes, Sears, you name it, everyone is out. Must have shipped them all down south, or west. She said the power company said they could easily be without power for a month. wow! It seems quite unanimous by all who weathered out the storm, it was a very bad experience... scary and they hope to never do it again.
Everyone had a slow morning and a late breakfast. The cable was down until around 9 or 10am, so not tv and no Internet early in the morning, no big deal either as it came on when mom was ready to work. Mom is taking the day off, as the kids are off from school today, but she's still getting some work done, she really enjoys her job. Grandma has taken over Claire duty with an 8oz bottle of shake. And Claire seems to be putting it away!
cuddling with Grandma!Dad's car battery is dead today, it's been slowly going, and relatively new, so Grandpa is busy trying to charge it. Claire's brother finished his homework this morning and is playing on the computer, and her sister is tied to the television, but only for a short while... mom will kick her off that soon, and she will find something else to do. It is still raining outside, so mom is letting her have a peaceful morning. The winds are picking up every now and then, but nothing that is scary... rather, very nice and breezy out.
Claire did really well at PT and OT today, and mom, not having any coffee this morning, was really feeling her lack of sleep, and opted to take a nap when they got home. Grandma had watched the kids while mom took Claire to therapy, and when mom got home with Claire they switched off and Grandma watched Claire while mom and Claire's sister took a nap, and Dad and Claire's brother went test driving cars. Claire drank another 4oz and was very hungry soon after.
Grandma woke mom up in time to get ready for dinner.
Tonight, the family all went out to dinner, yum. Claire drank another 8oz bottle and mom gave her meds early and she went right to sleep on Grandma's lap, around 8:30pm. Claire only had 20 oz today, but mom thinks she would have had more if they hadn't had such a hurried day.
Claire was in bed around 10pm, but back up again at 11:30, and dad took her so mom could continue to sleep. Mom was up briefly to give her some mylacon for gas.

September 26  

So Grandma, here's what *I* think!Claire is sleeping in. Mom however has been up since 5:30am, monitoring hurricane Jeanne which made landfall at 120mph winds in the middle of the night. Mom has several family and friends in the Melbourne area, where the worst of the squalls seem to be coming through and is scared for them, as the hurricane is stronger than the last one that hit only weeks ago, and family stayed for this one. Fortunately, no family stayed on the barrier islands, but the family is still trying to contact folks down there and with power out, it will be difficult unless they have a 'corded' phone, and lines are still up.
The sun is coming up and mom is going to wake Claire for her meds and breakfast. Grandma and Granpa are glued to the tv watching the weather and wondering how the family is doing also in Central Florida. The storm appears to be coming towards Claire's home, but should be very minimal when it reaches as just a tropical storm. Fingers crossed.
Our thoughts today are with everyone experiencing this hurricane. sad.
The evening was filled with fun and family. Claire's uncle brought his family over and everyone pitched in for a delicious spaghetti dinner. Afterwards, mom made brownies with brickle and nuts on top... served Grandma cuddlin'with moose tracks frozen yogurt. yum! Claire finished her day off with 25 oz and went right to sleep once Grandma put her in her bassinet. She slept well all night.
The family was planning on getting remnants of what would be Tropical Storm Jeanne (downgraded from hurricane), so mom expected the electricity would be going out and put a bag of ice in a cooler with some lunch meat and some ready-made coffee (and half and half, yum!). She didn't bother with drinks or milk, as the kids could drink juice boxes from the pantry and do without milk for a short while.
Then she made sure Grandma and Grandpa had a flashlight, in case they needed to get up in the night, and didn't have electricity, and then off to bed she went... to watch the weather on tv. Just before midnight she noticed a squall heading towards them, and told Claire's dad that it would probably be there in about an hour.

September 25  

OOOhhhh!  Patty Cakes!Claire was gently awakened by her mom for meds and breakfast. She had a terrific day! She went to her brother's flag football game, and her grandma held her the whole time while she slept. That cool crisp fresh air, and the nice breeze on her face kept her sleeping during the entire game...she's becoming a real football fan alright!
After the game, mom and dad went home to meet the sitter so they could go to the FSU football game. A big time had by all, as the second string quarterback got to show his talents and everyone was pleased... the future is now and it looks good for the Seminoles! Let's hope he can do as well in the future!
The game was wonderful, and at half-time, mom made several phone calls to family to check the status. With hurricane Jeanne out in the gulf, and headed towards family and friends, she wanted everyone to know they were thinking about them and praying for them.
After the game, mom and dad got their hurricane updates and saw that it still hadn't turned north like it was suppose to, so the likelyhood of them seeing rain and winds had increased, but shouldn't be too bad (fingers crossed -- gee, we do that a lot here!).
Claire didn't eat as well today. She only drank an oz or two before her BIG nap at the morning flag football game, and afterwards, when she finally woke up, sometime around 1pm, she started back to her old drinking self! She downed over 19 oz until she finally went to sleep around 10pm.

September 24  

All buckled in and no where to go!Claire had a banner day, drinking heavily at her daycare. Mom has been putting extra food in the bad lately, as she doesn't want to take any chances of Claire running out!
Claire's grandma and grandpa are up visiting for the FSU football game, and as Hurricane Jeanne refugees. The arrived a little later than usual, as they came up by themselves, and the decision was a bit difficult, but they will be comfortable here, removed from hurricane landfall and 100mph winds, as are expected at this time.
The rest of the family has opted to stay and 'ride out' the storm. They are a little tired of the shuffling around, and didn't have much, if any, damage from Hurricane Frances, so they are staying put in Melbourne. Also, some of them actually don't get time off (health care industry, etc). Claire's aunt (who is in the video on Sept 7th with her) and uncle do live on a barrier island, and did opt to evacuate to Grandma's house, closer in-land. Claire is happily oblivious to all of this! And now she has Grandma to hold her and love her... so she's actually fired up about the whole situations. Keeping family in Central Florida in our prayers today and throughout the weekend.
She drank 28oz today... all shake! Keep it up Baire!!

September 23   Claire at PT... Love this toy!Claire slept through the night. Mom did too.
Mom woke her up in the morning for meds and breakfast and Claire drank 7oz of shake in about 45 minutes... then was talking up a blue streak (whatever that means). She talks and talks, then fusses, or maybe that's talking... and mom gives her a bottle and she is quiet for a bit... until the bottle comes out, like when she's finished, and she lets you know she is not pleased... talk talk talk... mom must get that on video! Claire had her RSV shot today and Dad picked her up for that and is taking her to a 'walk through' on a house that he will close on tomorrow. He said she is sleeping hard, so bringing her along won't be a problem at all (until she wakes up and starts yappin again -- hehehe).
Claire has had a terrific couple of days. Mom is hoping it will keep up so she will gain some weight (mom thinks she will gain weight too...hehehe). Claire has been keeping her food 'down' too... no throwing up for about a week... can't wait to see the scales tip next week! At daycare, Claire drank 12 oz, and at home she had two 4oz bottles which she drank in probably a 2 hour period. After the last oz (her dad was feeding her) he took the bottle out of her mouth and said, 'Claire, you are as fat as a tick'... and almost refused to feed her any more as he thought she was 'going to BLOW (up)'. Of couse she would have had another bottle if she wanted it, but dad put her on his chest and she was just way to comfortable to ask for more food... and they bonded.
Claire drank 27 oz of shake today.
September 22   Claire at PT... sitting up pretty and bright eyed!Claire slept through the rest of the night. Mom was happy because she was pretty tired.
Mom had to wake Claire for her meds and breakfast and Claire drank 5oz of shake. She finished it off when her Hospice Family Coordinator was visiting, then she went to sleep (Claire went to sleep, not the coord).
Mom was able to get a little work done and shoot off some emails before packing Claire up for PT appt. Her OT appt was cancelled today; it was cancelled on Monday too, so Claire had no OT this week. The PT did show mom the bill for the Kid Kart they are odering for Claire, and it was... well... it was very high. Even higher than mom thought it might be. Hopefully, insurance or Children's home society will foot the bill. Claire worked on a bottle before, during and after her PT appt and finished off 6 oz (5 of formula and 1 of unflavored pedialyte, ironically added for flavor).
Claire fussed for most of the PT appt. Mom isn't too sure why, but seemed better when they got home. She drank another 4oz of shake and started pushing it out with her tongue, so mom put her in her boppy with her mirror to look at while she waits for her Music Therapy (MT) to come, in about 10 minutes, if she's on time. And mom is back to work.
Mom got a call for Claire's RSV appt. Tomorrow. Claire is not going to like that a bit.
She drank 27 oz today.
September 21   Snoozin in my bassinetClaire was up at 1:30am. Probably a little earlier because she went to bed a little earlier. She drank 4oz of shake and went back to bed. When she woke up , she had 5 oz of shake. She had a nice day at daycare, drinking 10 oz there and once back home, drinking another 12oz in the evening. Just when mom thought she was full, Claire started fussing. Mom thought to try the easiest thing first, that would be feeding her, and she would drink... then fuss again... so off with another bottle. Mom was very happy to see her eat so much... and glad that she was keeping it all down. Probably has something to do with getting that new bottle of meds out... Claire seems to be back to her old self. No fevers, no seizures... everyone is happy!
Claire went to bed at 10pm, and was up again at 11:30pm... crying... and loud... and mad! Mom made her a bottle, given her history of eating today, but she didn't want it. She seemed congested, but that shouldn't make her cry, so mom gave her some mylacon. After a few minutes, seeing it didn't make a difference in her cry, mom gave her some nose drops, then a decongestant. Eventually, Claire calmed down, mom tried to feed her, but Claire was just wiped out, so mom put her back in her bassinet. She made a noise here and there, but soon went to sleep until morning. Claire had a whopping 27 oz of shake for the day (maybe that is what was bothering her).
September 20   Claire hasn't seemed to have any seizures this morning, so mom is grateful for that. Mom was up at 3:30am, checking on Claire, and Claire just let out a cry out of no where. Mom fixed her a bottle and she drank 3 oz of shake. Claire woke again at 7am for meds and another 5oz of shake, then drank a couple oz of formula/pedialyte. She fell asleep, while mom got ready for work, then mom had to wake her for an overdue bath. After the bath, mom put Claire in the swing, as dad was going to take her to her PT appt today, and Claire fell asleep. Mom commented that he was going to have a rough time babysitting Claire until her appt (teasingly).
Claire's diaper was wet, so her BMs may be back to normal. Mom gave her banana shakes last night and this morning, hoping to 'firm' her up some... and Claire ate them very well... bananas are her favorite!
Claire drank 25 oz today... met her goals... good baby!
September 19  

Claire and her BUD!The seizures continued and Claire had one around 12:30am this morning.
Once Claire was asleep, she slept through the night, that was more than mom can say about herself, as she was up worrying about her peanut. After the seizures during the day, mom wasn't too sure what to expect.
From what mom could see, she had another at 10:30am and then 11:30am. Claire had gotten her meds a little late today, and mom noticed that she was nearing the end of the med bottle, and in the past, Claire had gotten seizures towards the end of the bottle, so mom pulled out the new bottle and started dosing at her afternoon med. Hopefully, after a few doses, she will be back to her old self.
The seizures could explain Claire's sleeping a lot and not wanting to eat. It's kind of a chicken-egg thing... is she sleeping because of the seizures (the tend to take alot out of her) or is she having seizures because she's sleeping all the time and not eating.

Claire had another seizure around 3:30pm. Mom was sure that Claire's levels were likely not back to normal by then, and was hoping it was her last seizure.
Claire's Aunt, Uncle and Cousin came over in the evening to have dinner. It was so nice having them over... a good relaxing day for all of us. Claire had to very very full diapers while they visited, and drank about 5oz of shake, and then some as her uncle fed her most of the time he was visiting... they bonded well.
In the evening, she had another loaded diaper, mom was wondering where it was all coming from! It never really came out as diarrhea, but it was very loose, and that is good for Claire, only with so much over such a little time, by bedtime, her bunnies were quite red, and she was irritated over the whole situation. Dad tried feeding her, but she just wanted to cuddle with him... after she settled down, mom tried putting her to bed, but she was fussy... mom put a bottle in her mouth to feed her, she took a couple gulps and passed out from exhaustion... so mom put her to bed around 10:30pm. She ate pretty well today, probably close to 20oz for the day.

September 18
  In the evening, Claire had a seizure. Mom was bewildered, but knew that her meds dosage hadn't been increased in a while... and wondered if that had anything to do with it. Also, Claire had not been eating well... maybe 10 oz today. Mom thought she would really work on Claire's eating and see if it would help her out... and keep the thinking cap on for any other changes in Claire... aside from the sweaty night before.
September 17   Around midnight, dad called the utilities again to complain. It had been off about 4 1/2 hours by then. Mom was starting to wonder about the food in the fridge... but the least of her concerns as she didn't put the oxygen on Claire, she would hold out until Claire really needed it... and she was snoozin just fine on mom's bed.
The utilities company called back within about 5 minutes to ask if the power had been restored (from his 7:30pm call) and dad said no. Then they heard trucks and eventually the power came back on sometime around 12:30am and after another call from the utility company, who would call later in the morning twice more to see if the power had been restored. They tell you not to call them, and then they seem to ignore you when you do, and so it seems like after the first hour, you just gotta bug those guys... like they forgot there was no power. That seems harsh, but the storm was long gone this evening, and when the second call went out, they reacted quickly... if dad hadn't called that second time, how much longer would it have been? If he had called sooner (and not fell asleep like everyone else in the house) would they have fixed it sooner? And the family would have had ac? Claire did really well through it all, tho she was a little sweat box, but mom didn't want to wake her with a cold washcloth. Once the lights go out, she's got a pretty good understanding that it's time to sleep...tho on many days, she sleeps well when the lights are on too. She's such a good baby! Aside from a little power outage (fortunately in the evening when it is cooler outside and kids don't need to be entertained) and a little cable outage, the family weathered the storm just GRAND. Kids don't understand why they can't dig into the pudding packs or the pop tarts mom bought 'for the hurricane'... but with two more out there, mom is holding out. She tells them it's 'for when the power goes out'... now she adds, 'for a long time'... but told them when the last storm passes, they will get those 'goodies' in their lunches. Hopefully this will change them from wishing for a storm (so they can have the snacks) to wishing for the storms to be all gone. Mom doesn't typically buy snacks with high sugar aside from the occasional Nutter Butter cookies, so these are a real treat.
Mom woke Claire in the morning for meds, breakfast and off to daycare. She drank 6oz of shake before leaving home and was alert and yelling at her mom to play with her everytime mom walked by her trying to get ready for work. Claire is getting to be more vocal these days... her caregiver is going to have a fun day with her today.
Claire has been fever free since yesterday morning.
September 16   It's almost 3am, and Ivan is sending the family a little present in the form of a squall. It woke mom up because of the thunder off in the distance. Amazing that mom could hear that with the oxgen concentrator literally only a couple feet from her head, but it was enough to make her turn on the tv, and sure enough there was one coming in. She woke up dad, who was asleep on the couch with a window open to hear the storm (he knew the concentrator was just too loud to hear trees branches falling, etc). There are no tornado warnings right now on the radio, tho that band looks really mean, and of course, mom can't sleep... there's still lightening and thunder off in the distance. If the electricity stays on and family stays awake, updates will continue. Mom will temporarily turn off the oxygen concentrator so they will be able to hear the storm from bed and mom will listen for Claire. Mom is opting to shut down the puters until the squall passes.
Soon after, a tornado warning is issued until the squall passes, and around 4am, it is gone and mom finally goes back to sleep... but up again at 8am as the kids are up looking for a video, the cable is out. That puts mom's Internet connection out too, but mom is happy that is all they lost, the electricity is on, and there is hardly a branch on the ground outside. She's amazed too, as she heard transformers blowing all night, branches cracking and police car sirens off and on. Claire's family is very blessed.
Another warning is issued for a few counties north, everyone is hoping the worst is over for them, but knows continued warnings will be issued for much of the day. Claire is waking up hungry... better get that bottle ready.
Claire woke up with a fever. It was 101 under her arm, which is 102. Mom gave her a small dose of Tylenol and Claire seemed happy and drank about 4oz of shake before going back to sleep. Her temp was down within about 20 minutes to 100 (99 under arm). Claire was scheduled for her RSV shot today, but mom had to cancel and the dr office will call to reschedule.
The winds outside are still gusting and the police sirens going off every now and then.
Claire's hospice coordinator called to check up on the family. Mom told her everything was fine, and mentioned Claire's fever, a likely result of her shots yesterday and she agreed, but said to keep an eye on it and call the hospice nurse if the fever persisted. Also got a call from dad's brother in south FL checking in on us. His wife is expecting a baby any moment, so the family is patiently awaiting the news. His 4th girl, her name will be Emily... a nice 'old' name like Claire! Hope they don't end up calling her Jeanne (the name of the hurricane out in the Carribean now). Mom called her brother and they are doing well too. They have electricity and all agreed they'd dodged a bullet last night... a few hundred miles to the east and Claire's family would be in deep distress. A lot to be said for prayers... Thanks everyone!
Mom took a nap around 11am until about 3pm. Guess she was a little tired. Dad took over Claire duty. He tried feeding her, but she didn't eat the whole time mom was sleeping. During mom's nap (if that's what you call that), Claire's hopsice nurse came by and said her lungs sounded better than the last time she was there, so mom's taking that as, 'they sound good', and thinking that the fevers are still from the shots. At 4:20pm, mom took Claire's temp again and she was 98.6 under her arm, so add a degree and get closer to 99.6. She drank really well for mom, about 6oz of ped/formula. She's alert and happy... mom's glad for that as she wondered if the change in pressure from the hurricane would affect her breathing, but she seems to have done fine through it all.
Dad's heard stories that there are a lot of people without electricity in town. When mom got up, the cable was out again, but no biggie... the journal shall go on... and just get uploaded to the web, whenever it comes back. Mom was hoping to answer some mail and get some work done, but perhaps God thinks she needs a day of rest. Whew, looks like a long journal day. Too much time on our hands. Mom and Claire's brother listened to the radio and ate the last of Grandma's mangos for a pre-dinner snack in the evening... yum!
The neighborhood was without power for most of the day, mom felt lucky they still had power.
Well of all the silliness!! At 7:30pm, our power went out. Around 8pm, dad called the utilites to let them know and tell them of their 'special needs' child, who would be on O2 in the evening, but also mentioned she had a tank or two. Guess that cancelled out having a speical needs child. The kids went to bed in Claire's room so they would stay a little cooler as the house stayed cool until about 11:30pm. Claire slept on a towel at the foot of mom and dad's bed, as her bassinet tends to be warmer (with the sides). Mom sponged her down with a wet washcloth to keep her cool. She remained fairly cool all evening, if she had gotten too warm, mom would have put more water on her and taken off her outfit. If she overheated, they would have gone to Claire's uncle's home.
At 11:30, mom woke up... it was very warm, so she started opening windows and a nice cool breeze came through.. it was humid outside, but the coolness made up for it... probably could have opened the windows earlier, but it was warmer outside then than it was inside, and everyone fell asleep around 8:30pm. Claire was doing well with the nice breeze coming in.
September 15
12 lbs.

Claire slept through the night, but was up at 5am. Mom fixed her a bottle as mom was pretty much awake too. Claire drank 3oz, and went back to sleep until her dr appt later in the morning.
Claire weighed in at 12lbs even! Mom was proud. She was 25 1/5 inches and she got two shots. Tomorrow she is scheduled for her RSV shot.. the first of the season (she will get one every month -- RSV is like a 'baby flu').
After the dr appt, mom went by work to show off Claire, and check on a few projects, then off to home to get Claire a new bottle, as she finished her 5oz bottle of shake. Mom noted that the public schools were going to be out tomorrow, so she knew the kids would be off tomorrow too. This didn't surprise her any, and she made sure the kids had enough reading and work to keep them occupied by calling dad to see that they had all the books they needed. Claire's sis has her ABC bag and a 3-d spider to make, her brother has a spelling unit to complete along with any other homework he was assigned today.
Claire went to OT and PT afterwards, 45 minutes each, and Claire did some nice things. She held onto a toy for a short time with her hands out in front of her, and really examined it... she stayed focused on the toy, looking right at it... no telling what she as thinking... perhaps, 'Why is this thing in my hand'... or maybe' Whoah! this totally rocks!'. Either way, she wrapped her little thumb and fingers around the toy... both hands, and was holding it by herself. The PT was holding her arms up so she could see it. Mom thought that was very cool. Claire also held her head up by herself for a little while while the vibrating bug had his leg on her face... she really liked him... he had nice big eyes that she liked to follow. She only wished she could have gotten him in her mouth, bet that nice vibration would feel nice on those elusive teeth. It was a good way for the PT to get Claire to bring her head down when she was sitting up.
After OT, mom brought Claire back home she finished her 5 oz bottle and had her meds. Her brother and sis were already home as dad picked them up early, to avoid the nasty situation of traffic late in the day. Evidently, our little town has been chosen as an evaculation city, so there are many new faces in town... and that's enough for dad to get the kids early. Also, he wasn't too sure what the weather would bring later in the evening... and no use being out in the storms on the additionally crowded streets.
It was so nice having everyone home, especially for MT (Music Therapy). Claire started a new bottle drinking about 2 oz of ped/formula mixed. Claire and her sis realy enjoyed all the songs. Sis even sang along for a few songs, mom wished she would be able to film it all, but knew once the camera came out, the singing would stop, so mom just enjoyed it all.
Claire took a nap in the evening and woke up with a cry. She had a fever of about 100, and mom looked over the shot information to find out if fever was accompanied with the immunizations. Of the two shots she had, one had 1 of 4 children having fever, the other was 1 in 10 children. So mom gave her Tylenol and meds, and she went to sleep shortly afterwards, she wasn't hungry tonight.
Word at the last minute is that mom is off tomorrow... along with the kids... well, it is certainly more convenient that way.

September 14   Claire slept through the night. Mom woke her in the morning and gave her meds and she drank 5oz of shake. She went to sleep for most of the day and went to daycare late today. At daycare, she woke up and drank 8 more oz of shake, then 2oz of applesauce with some barley in it. She finished off 2 more oz at home and then 2 more oz of shake. That's 19 oz by 6pm.
For now, the family's home is out of the 'cone' for hurricane Ivan. They keep praying they will stay out of it, as it is now projected to hit Mobile, AL.
Looks like they are far enough away that they will stay at home. The weather calls for only tropical storm winds for Claire, so that seems like a pretty good compromise (understatement of the year).
September 13   Claire was up again at midnight. Fortunately for her mom that her dad was up and came in to get her. Mom pointed out the juice that was still fresh, and after hearing Claire cry for a minute or so, went out with some Mylacon for Claire, in case she developed gas, and gave her a dose.
By 2am, mom noticed Dad had put Claire back to bed with her cannula on, and gone to bed himself, and Claire started fussing... so mom picked her up and fed her about 3oz of juice/ped and she went back to bed and back to sleep until morning... mom however, had a lot on her mind with Ivan, so she turned on tv, the path was still the same, heading WNW, not turning yet towards the Florida coast but still steering towards Texas. Wondering how much preparation she needed to do, and when she would get it all done, since she needed to go to work as usual in the morning. She finally dosed off sometime between 3am and 3:30am.
Up again for work, dad got the kids off to school and mom eventually dragged herself out of bed. Dad said he would keep Claire home, since she had a PT appt and mom would be running late already. Mom also wanted dad to go to the appt and get used to going, as he would be taking Claire on some days to her appts, also, a seating specialist was going to meet us at the PT appt today to talk about something for Claire, to keep her upright and help support her back, which is showing signs of scoliosis.
Mom went to work, then to the PT appt, where she met dad, Claire, PT, PT intern and the seating specialist. The appt was very productive and it was suggested that Claire would benefit immediately from using a Kid Cart. It adjusts in many ways, and can even be used as a stroller. Mom liked the idea of Claire sitting at the dinner table with them and having a tray of her own for toys and hopefully one day for food. Mom is hoping Claire will learn to pick up food and feed herself, and this seating would put Claire in a position to learn, esp with a tray. It is all so very exciting! Mom spent a lot of time talking with the specialist and the PT, and learn a lot, but certain there is so much more to learn. The specialist said that when they get the cart, they will be able to add foam and mold it more for Claire's little body and special needs. Let's hope everything goes as smoothly as planned. Mom has read many times on the Trisomy boards how difficult these carts are to get for kids... Claire truly needs one if she is going to participate with her family and learn to do things, not to mention, it will help with her posture and her breathing. Claire finished her 5oz of ped/formula before her visit with her PT. She blew bubbles for her and did the 'look everyone, I have a hand' motions for her too. Claire also stroked her hair a few times.
Mom put her on blowby oxygen at night, as she seems to be doing well with her breathing and cold.
September 12  

Claire slept through the night. So did mom, but waking up very tired and needing to give Claire her meds and breakfast. Perhaps she will get a nap today. Everyone lounged around today, not feeling much like packing or preparing anymore for Ivan, and not doing much else until after church. Mom took Claire's sibs to church as dad stayed home with Claire. She slept the whole time, as she drank 4oz of shake this morning and did her smiles with tongue-pushing-milk game. There was an ice cream social for altar servers, so the kids enjoyed ice cream after church (mom had chocolate with chocolate and caramel syrup and whipped cream). Mom also got some coffee, it was very hot, so she put some of her chocolate ice cream in it... cooled it down and was yummy. (Hoping no one noticed).
Dad waited until they got home before running up to get some plywood. That will be his project for the day, getting the sheets ready for 'boarding' before the family leaves.
Hurricane Ivan, hitting the Cayman Islands today, appears to continue on its westerly coarse, only just now one news person said it was starting to go more northerly, but mom is optimistic it will continue to go west, and perhaps the plywood won't be needed, or the packing, tho she may do that today and skip the nap.
Claire needs to be awakened for meds and food.
Claire drank in the evening pretty well, tho not as much as she needs. Mom switched her to more fluids, as her tummy seems to be getting a bit larger these days, and BMs are minimal.
Mom played with Claire in the evening after the kids had gone to bed. Claire was holding her right hand in the air, looking it over and following it as she moved from side to side in front of her face. It was almost as if she thought, 'no one has checked my tracking lately, so I'll just do it myself', and she continued to move her hand, in the air, back and forth and follow it. Mom thought it was very neat.
Claire had more shake, then polished off 5oz of pedialyte/formula in the evening. Mom fixed her some ped/juice, but she drank only an oz before going to bed around 10:30.

September 11
18 months!
  Claire is 18 months today.
She slept through the night and mom had a heckofa time getting her to eat today. She just wants to sleep, and with all the preparations for Ivan going on, mom rationalized that she needs the sleep. Claire did drink about 6oz of shake by 2pm, tho most of the drinking was in her sleep.
Mom has hit the red cross site and soon FEMA to be sure her list is all-encompassing, then she will start some shopping for necessities for hurricane survival kits, etc. There are three openings that she and dad determined should be boarded up. The windows, tho casements, are just way too big to board up... there would be seams in the plywood that the wind would just knock through, so they are going to take chances with those windows. They are fairly new and supposedly beveled for extra strength... they also are suppose to withstand very high hurricane force winds. Guess they will get their chance this week to prove they are worth the cost. Once plans are in place, mom and dad will decide which day to evacuate, as evacuation seems inevitable at this time.
Mom asked Claire's brother what he wanted to bring... he had a long list so she asked him to write it down. Mom asked Claire's sister and she came down with 4 Barbie dolls. Mom didn't question it, and just said, "okay, is that their favorite outfits' and got a confident, 'yes', and left it at that. Mom will pack a favorite blanket of sis's too.
Even if the family doesn't go, it will be good to know they can at the last second. Plan B's are always a nice comfort 'blanket'.
Claire has 2-O2 tanks for when power goes out and mom just refilled her prescription for meds this week. Once mom stocks up again on baby food, etc, she will be cleared for take-off (as Grandpa would say).
Mom and Claire's brother watched the September 11th videos showing on tv. It is amazing how it affects you all over again, like maybe they just forgot how really bad it was... mom teared up and could hardly talk... it was just horrible for everyone. Prayers go out for those people... the victims and the survivors of this awful tragedy.
Claire caught her second (or perhaps first) wind in the evening and was ready to play. She drank, then smiled and hung out playing with mom, then drank more... until finally she was holding the shake in her mouth and pushing it back out with her tongue and grinning at mom. After a few minutes, mom would feed her again and she would eat more until she got bored with eating and started pushing out the food again.
She had meds and a bath, then more shake and off to bed. In the evening, she probably totaled about 12-14 more oz, totally only close to 20oz for the day. Mom noticed when she adds pedialyte to the shake, Claire drinks more, so she's going to try that tomorrow.
Hurricane Ivan has become a low category 5 (catastrophic) and seems to be still heading west. That could be good for Claire and her family, as they hope it continues away from them. It is expected to turn north, then northeast, but if it turns really late, it could go way west of them. Also, no one is saying that the storm will be a cat 5 when it hits, and they tend to lighten up when they hit the 'flats' by St. Marks, Florida... so the family is hoping they won't have to evacuate. (Finger crossed and big lotta prayers!)
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