Claire had a good night. She slept until 5:30am with her canula on and fussed like she wanted her bottle. Mom fixed her one, gave her her meds and she eventually went back to sleep.
Today was a day of preparation. Mom figured that they often lost power with summer thunderstorms with all the trees in the city, and so few storms to keep them clean, so she planned for the electricity to go out within the next 24-48 hours as Frances makes her way across the Gulf and up towards the Florida panhandle (northwest Florida). After church (Claire finished 4oz of pedialyte in church), mom filled up the gas tank, turned her fridge and freezer to its coldest setting, went to the grocery store an bought nothing that was frozen, and some cold cuts that would keep in the cooler (dad got 4 bags of ice) and a few other small errands. She came home and wanted to clean a little, and her uncle said they were getting dinner and everyone should go over for the last 'swim' before the 'cane hit. Claire was just finishing up another 8 oz bottle of shake. There was so much to do, and as there was a huge squall that came through just as the family had finished up preparations. A large branch fell right next to dad's van... and it kinda hit home that this could get bad... but still thinking the best, preparing for the worst.
After the squall, the radar images looked clear for a good while, so everyone went over to Claire's uncle's home. It was fun, everyone had something to eat and watched the weather channel along with some college football. Tensions had been high for the past couple days as family watched their city, Melbourne and Indiatlantic area, get blown around on National television.
Claire's aunt enjoyed her tonight as she fed her 7oz while Claire and her family were visiting. It was mostly applesauce with a little formula mixed in. She was fussy again tonight. Claire's sister will be sleeping with mom and dad tonight too... probably not much sleep in store for anyone... but for one night, they can all handle it.

Claire had a great night. She was up once and drank only an oz of shake and went back to sleep. Having her canula on really seemed to help her rest comfortable. Dad got the kids off to school this morning. It is "A" week in Kindergarten and Claire's sister needed "A" words for her ABC bag. (They fill the small bag with items starting with the letter of the week). The first two items on her list were Barbie Dolls... Ariel(from The Little Mermaid) and Aurora (Sleeping Beauty).. after mom approved, she proceeded to name the rest of her Barbies with names that began with "A", but mom said the had to 'come with the name already'... she accepted that, and eventually Aurora was even taken out of the bag... she ended up with an airplane, Ariel, Army man (no guns as he was more of a commander), and a small bag of three Animals. Mom wanted her to take a small container of applesauce, since they had no apples, but was over-ruled by Claire's sis.
The hurricane was expecting to increase in strength and not directly hit Melbourne, FL., but rather hit closer to West Palm Beach, FL. Can't say that is good, as anyone who gets this storm will lose much property, and hopefully not lives.
Mom woke Claire and noticed her canula was only in one nostril. At least she was still getting some O2, and sleeping so well mom knew she needed her rest and hated to disturb her. Grandma was ready to feed her with bottle of shake and cloth diaper. Claire will get her bath once she has meds and breakfast.
Claire had a nice day today, but not a big eating day at all. Mom gave her a lot of shakes with pedialyte instead of formula as she has been having a nasty, loose cough, and the formula probably doesn't help any.
Claire was in bed after 10:30pm, her grandma fed her, she had meds, put on her canula and was out like a little light.

Claire was up fussing at least once an hour. Mom would just get to sleep and there she'd go again. She seemed a little hungry, but still went right back to sleep after her single cries. She was up in the morning and mom gave her 4oz of Pedialyte before school.
Mom got word that her family had arrived in town at 8am (they left Central Florida fleeint the hurricate at 3am to be sure to be on clear roads without a lot of traffic). Mom was very excited to have most of her family here, to for all the wrong reasons. And she was sad that her brother-in-law stayed in Melbourne. Mom has another brother-in-law who wouldn't leave, and so, mom's sister wouldn't either, and they have an older daughter. Because of that, another sister, who lives in Orlando also stayed so they could meet at the home in Orlando. Please keep them all in your prayers, today the storm's path doesn't look good. Mom has 4 sisters and two brothers. Two sisters came up and one brother (with their families) and one brother lives here leaving two sisters in Orlando. Her sister who lives in Orlando was there for hurricane Charley a month or so ago, so she can't be too pleased about being there for hurricane Frances, twice a big as Charley was. Claire's grandparents came too. Dad's family are in South Florida, and opted not to come up, they were planning to be here on Wednesday, by Thursday the roads were just getting too crowded to make the trip up. That sums up the family and mom spent part of the early morning taking a head count to see what everyone was doing, where they were going, etc. Admittedly, she was happily surprised to hear at 8am that most of the family was only 15 minutes from her home.
Mom went to work as everyone was meeting at her brother's home as they came into town. Mom met them for lunch later, as she was at work today. Later, mom picked up Claire from daycare, she'd only had 7oz and mom was a little concerned about her eating. Mom brought her home and fixed Claire her favorite shake, bananas and berries mixed. She gulped down about 4oz and they headed over to mom's brother's home to meet up with the rest of the family.
Dad took Claire's big sister over to her uncle's home so she could swim and show her other uncle (who taught her swimming over the summer, and was here escaping the hurricane) who well she could swim now. Amazing what a couple months can do! Dad took Claire's big brother to flag football practice, his first practice, and he loves to follow football. The coach said he could be quarterback, so he and dad are excited. Mom thought he would be great at receiver, she's seen him catch with dad, but either position will be fun for him.
In the evening, Claire's aunts fixed dinner for everyone and it was yummy ziti! With the kids still having school in the morning, mom and dad had to get them home and brought grandmma and grandpa home with them for the night. They slept in Claire's room, as Claire is still sleeping in mom and dad's room, and the sibs rooms are a real mess.
It was all eveyrone could do to stay up to watch the president's acceptance speech a the convention, then catch the latest hurricane update (it lost speed and strength... from 140mph sustained winds to 120mph sustained winds, and moving at only 9mph... at that rate, it won't be in Tallahassee until likely Monday sometime, but at a tropical depression strength). It has been a long day, and Claire finished up with only about 17oz including Pedialyte, so not alot of calories. Mom put her canula on her during the night to help her sleep better.... and help mom sleep better too.

Claire had a rough night as she was coughing a lot and crying with each cough. She drank pretty well today, nearing 28oz of shake for the day and very alert. She had OT, and MT today. At OT, her therapist decided to skip the splints, she is opening her hands pretty well on her own, and the therapist didn't want to limit her with splints. She had an infant toothbrush (that goes over her finger) and put her finger in the back of Claire's lower right bottom gums in the back and pushed down just a little so Claire could bite down... then she put her other finger on the outside of Claire's cheek and gently squeezed and pulled the cheek towards her. She did this with her upper and lower gums. She wants to stimulate Claire's mouth for feeding purposes. She also put a Nuk toothbrush in her hand and Claire brought it to her mouth and put it in her mouth. Mom was impressed. Mom has big hopes of her one day feeding herself by picking up food and putting it in her mouth. Right now, sitting up would be welcomed also.
Later her hospice nurse came by to see her. She weighed her in at 11lbs 11.5 oz. Claire had a pretty evening as one of daddy's friends came over and wanted to hold her all evening. He also was able to get more good smiles out of her, something he does well.

Claire had a great night. Nose didn't run very much at all and she slept relatively peacefully.
She woke mom up around 6am, she was hungry and mom changed her diaper and put on her play clotehs, then gave her her meds and then bottle. She drank about 4oz before dozing off before going to daycare.

Claire slept through the night, but not mom. She was worried about her little Peanut and wondering if she was breathing well. Mom figured since she was sleeping, she probably was, but was still up frequently to check on her and be sure her oxygen was close enough to her. Mom considered putting on Claire's canula, but her nose has been running so much it would likely get clogged, and besides, Claire was sleeping and mom didn't want to wake her.
Mom did get her up in the morning for her meds and shake. She drank 4oz and had a nice big BM before heading out to her daycare, where she finished another (almost) 4oz of shake.
She had PT today at noon and did really well. Her neck seems to be loosening up and her head seems to stay more 'mid-lined' more often without any fuss. Dad said he would start taking her to PT on some days, that would help mom out a lot, since it is a small drive from work to daycare to PT, then the trip back to work. Claire drank most of her 8oz bottle at her appt and another 7oz at daycare.
In the evening, she had a nice bath and drank her 4oz of shake before bed. She was up to almost 28oz of shake for the day, and couldn't stay awake to play with mom, so mom put her in her bassinet around 9:30pm.

Claire was up at 6am, fussing for her bottle. Her nose had been running and mom had lots of cleaning to do to get her face cleared up. She had a nice day, hanging out and drinking shakes. She was fussy on the way back home from her friends home, and mom fed her a bottle for a few minutes and Claire moved her head aside (as if to say, she was done) and put her thumb in her mouth. Within seconds, she was asleep.
At home, she drank more and took a nap. Much of the day she was in her swing watching mom try to clean her room. Since Claire was in mom's room, Claire's room had become a bit of a storage room, and mom wanted to clean it up in hopes of getting Claire back in her own room eventually.
Claire missed her bath because she was so exhausted in the evening, mom didn't have the heart to undress her for a bath. Her nose was running and her head was congested all day, and mom didn't want her to catch a chill either. She had a few doses of decongestant and one dose of Dimetapp too. Claire drank another 4oz before bed and all but passed out as mom was feeding her. She just couldn't drink anymore so mom put her to bed around 8:30pm. But had to wake her about an hour later, as she didn't have her meds, and went to bed too early to get them. She was a tired Baire.

Claire was up at 5:30am, hungry. She'd slept most of the night and was ready to begin her day.
She hung out at her friends home by the pool as her sibs swam, and eventually went inside and sat just inside the glass doors in the air conditioning, so mom could watch her fall asleep, and still watch the kids.
Mom and dad had a pina colada... or two... and a delicious dinner later. It was a fun weekend, very relaxing with friends.
In the evening, Claire drank about 8oz (she ended up with 28oz for the day -- all shake) and when she finished the bottle, she was so tired. Mom put her to bed around 9:30pm and Claire was asleep within 10 minutes. Mom finished watching the USC vs VT game, first college football game of the year (flipping between that and preseason Bucs vs Dolphins -- a real family dividing game).
Mom was in bed by 11:30pm.

Claire had a good night.
She went to daycare and afterwards mom packed everyone up and they went to visit friends in Georgia for the weekend. Claire had about 24oz of shake for the day, and a good BM or two. She seems to be doing really well these days. In the evening, she was in bed by 11pm, and mom was too, shortly afterwards. Dad stayed up with his friend and watched movies.

Claire was asleep through the night and mom was up at 2am, she decided to wake Claire. Claire had been stirring a bit anyway, and rather than go to sleep only to wake up at 3am to feed the Princess, mom opted to feed her while *mom* was awake. Claire drank about 3-4oz of thick shake and went back to sleep. She was up again at 4am, crying as loud as her little lungs would allow. Mom held her, offered her a bottle, but nothing... mom gave her some Mylcon for gas, and she soon settled down and eventually drank about 1/2 oz and went back to sleep.
Mom woke Claire up in the morning to get her started on her bottle early so mom could get to work early. She had a 10am meeting, but wanted some time at work to prepare for it.
Claire drank pedialyte and juice to loosen her up a bit, she drank a lot of thick shakes yesterday and mom was concerned that some of her fussing the night before was related to those. She had 3 of her 5oz bottle and then off to daycare.
At 1pm, she had her 45 minutes of PT. Her therapist was really ticking her off, trying to stretch her neck out, but noticed a bit improvement on her flexibility.

Claire was up at 2am, just as her daddy was going to bed. Mom fed her a couple oz and she went back to bed by 2:30am.
She had a busy day with her mom. They started off with Hospice visiting at 9:30am and a 5oz bottle, and had to rush out the door soon after for Claire's ABR (hearing test) at 11am where Claire drank nearly 8oz. Claire had to stay awake all morning and had a nice warm bath in preparation for sleeping during the test. From there, they rushed to mom's dr appt, and then out of there to get mom a little lunch on the way to the OT appt.
The arrived home at 4:30pm, not enough time for Music Therapy, too bad, but the therapist said she would try to go to Claire's daycare tomorrow. Mom was very appreciative as she knows how much Claire loves her music!
In the evening, Claire had her second bath for the day... to clean up the 'glue' from the ABR test earlier. She drank another 8oz bottle and went to sleep on the couch as her family ate dinner (pizza night - but they all had calzones). By 7:30pm, mom was exhausted and dad too over the mom duties so she could lay down. She fell asleep and slept until 2am.

Claire was up around 1:30am until about 2:30am. but up just once during the night, hungry.
Dad took her to her cardiology appointment and the dr told him that they could discontinue Claire's heart meds. A banner day for Claire!!
She had a busy day at daycare and at home a relaxing evening with family.

The alarm went off at midnight to remind mom to give Claire her meds, but mom wasn't too sure Claire needed more as she was still sound asleep. Mom stayed awake weighing her options. Mom couldn't sleep wondering if she had given her too much meds or not enough after re-dosing Claire from her throwing up earlier. She knew Claire hadn't eaten well in the evening and knew that was the priority, as she thinks that "too little" food accounts for possible seizures, so should she see if Claire would wake up? Mom checked on Claire about 1:30am. Mom was a bit frantic about giving meds and not giving meds, didn't know what to do, so decided that if Claire woke up, she would give her a smaller dosage (and that should get her back on schedule by the morning) and feed her, as she hadn't eaten much the evening before. Claire's eye's popped open and she was wide awake, just looking for a reason to wake up. She had her meds, drank about 3-4oz, then back to sleep by 2:30am. It was the only time she was up.
She woke up again at 7am and was hungry as anything! Dad fixed her a bottle while mom got her meds ready -- as Claire was crying. Probably good for her little lungs... but not a sound mom is proud of.
Claire drank 5 of her 6oz before going to daycare and mom off to work.
Claire had PT today and mom and the PT looked over some catalogs to see if there was any seating they could get for Claire that would keep her up straight so she could have a little help sitting up. She is just too small, so they discussed having someone come in and look at her and make something customized for her.

Mom and dad slept in until about 9am.
They picked up Claire's brother, as he had to "serve" mass and left Claire and her sister at her uncle's home. Mom and dad were so proud of Claire's brother. It was only the third time he'd served mass, and he was the only alter server. After mass, they ran a couple errands and went to pick up Claire and her sis.
In the evening, the day seemed to have gone by so very quickly, but the Claire stories were flying! Evidently, her aunts had her grinning bigger then they'd ever seen and she was making funny faces at her uncle which had them all laughing. She was the center of entertainment. She was up at 2:30am, drank an oz or so, and then went back to sleep. Up again at 4:30am for the rest of the day. The aunts decided to give her Mylacon for gas, and it worked well to calm her, but she didn't go back to sleep. Claire knew she would have only so much time to enjoy her aunts, and she didn't want to sleep it all away, they are WAY too much fun for that!
Claire had her morning meds a couple hours late, and her afternoon meds late too. She threw up her afternoon seizure meds and so mom thought she would just give her more, tho not as big of a dose.
At home, mom made sure dinner was ready early, as everyone had a big weekend and needed to be in bed early. The family ate dinner by 6pm and kids were ready for bed by 6:30, so they sat on Mom and Dad's bed watching tv when the electricity went out due to a big storm outside.
Fortunately, dinner was done, teeth were brushed, so the family just hung out on the bed, laughing and telling stories and making up some too. Claire's sister, 5 years old, likes to tell everyone about when she was bigger and had babies, Claire's big brother enjoyed holding Claire and playing with her. After a short while, the kids went to bed and then the lights came on about 5 minutes later.
Claire finished a bottle of pedialyte and juice, but just barely as she fell asleep and tho she was breathing well, she was completely 'unwakable' in the evening, from 5pm to 9pm. Mom decided it was possible that she may not have thrown up as much meds as she thought, and maybe got too much meds, which would explain her being sleepy (or she was coming down with something, or just plain totally exhausted). So mom opted to delay the evening meds from 10pm to midnight.

Claire slept really well! She was up once around 12:30am and drank about an oz, then back to bed for the rest of the night. Mom felt like she got a really good night of sleep. Perhaps it is the new bottle of meds?
The morning was filled with packing up the kids to go to their uncle's home to spend the weekend with his family and mom's sisters (and grandma!). Mom packed the new bottle of meds for the girls to use. No sense in taking any chances of Claire being up all night.
Once packed, Mom and Dad dropped them off and enjoyed their day. They did a bit of shopping and went out to dinner and a movie in the evening. They saw 'Harry Potter and the Prisoner of Azkaban'. It was amazing the number of young kids in the theater. They didn't bother mom and dad, but mom had heard the book on tape and knew there would be grim-reaper type characters (not just one, but many) along with a werewolf (who was very mean and ugly -- scary is an understatement). And given the previous movies, it could be very frightening... and it was. So many people think it is a children's movie, mom doesn't agree. Certainly, mom would have given it at least a PG-13 movie, NOT a PG... and she was certain those children did not sleep a wink that night! It reinforced mom and dad's notion that Claire's sibs wouldn't be seeing that movie any time soon... just way too scary for them, and mom and dad don't always get enough sleep as it is, no sense in staying up with a scared child when it can be avoided!
After the movie, they went to listen to a band, then back home for a good night of sleep!
Mom and Dad REALLY appreciate having family come to watch the kids so they can relax and get some rest. It is the best present anyone could have given them!! Thanks guys!!

Claire was up at 12:30am -- mom thought hunger or teeth. She fed Claire and opted for more Tylenol since it had been 3 hours. Claire was still not happy, so mom cuddled her and tried more tricks. Nothing helped. Claire drank about 4oz during the night, drifting off only to wake up about 10-20 minutes later. By 5am, mom asked dad to take over. Not that he had slept much, with a baby crying and all, but he was due to get up in another hour to get the kids ready for school, and with mom getting next to zero sleep, she was thankful he would help.
Dad fed Claire another 4oz, and she stayed awake all morning. She drank another oz before mom was up for work and taking Claire in to daycare. Mom may have gotten 3 hours of sleep... a power nap to some.
A very rough night all around. Mom is hoping it is all something she will grow out of. She's thinking either Claire is biting her hand with her new tooth and is annoyed with that, or she is still congested and her hunger makes her cry, but the congestion keeps her from eating. If mom is off base with this, then it's anyone's guess. Mom also got her afternoon med ready out of a new bottle... who knows, could be seizures again too.
After more thought, mom decided it could be time to use a new bottle of meds for Claire' seizures. She filled the dosage for daycare from the new bottle and she gave her evening meds from the new bottle. Claire was in bed at her usual time, right after meds around 10:30pm. Mom and Dad were exhausted.
In the evening, mom's family came over for 'happy hour' and dinner. The margarita's were flying and It was big fun. Outside, the rain was pouring down until everyone left. Mom's family came into town for their 'Claire-Care weekend' where they take the kids on Saturday night at Claire's uncle's home and Mom and Dad have a nice quiet weekend together.
Dinner was fun, pizza of course, and everyone left by 10pm, kids and Claire all in bed. Mom and Dad too.

Claire was up at 4am, hungry. Mom fed her 3oz and she was back to bed by 4:30am. By 5am, she was up again, so mom fixed another bottle, fed her another oz or two and put her back to bed. At 6am, she likely never went to sleep and started fussing. Dad got up with her and she finished the second bottle mom had made of 4oz. and she went back to bed.
Mom woke her later for meds and a bottle, but didn't have much time to feed her as they were running out the door late to work. Mom handed the bottle to Claire's caregiver as Claire was chompin on her hands, she was suddenly very hungry, and had a big 9oz bottle of shake (bananas, strawberries and apples!).
Claire finished her 9oz bottle and then another 8oz by the end of the day.
When she got home, she was hungry and drank another 4oz and was tired, so mom put her in her boppy pillow and she took a nice nap under the ceiling fan as her brother and sister played outside and her daddy mowed the lawn. So far, she's had 28 oz for the day.
In the evening, she added another 4oz, but up came about 2, so she still did well for the day. Mom gave her tylenol before bedtime, hoping to 'nip' the teething pain and Claire went to bed around 10:30pm.

Claire was up at midnight, and again at 4am until 6am. She was struggling with constipation, congestion and teeth. Dad gave her a decongestant and a bottle at midnight, they used the bottle to soothe her and it worked until she coughed, then she cried again. She drank 5oz of formula/pedialyte. She had a rough BM, and that helped some too. Around 5:30am, mom gave her some Tylenol. She hadn't given her any in quite a while and was hoping to avoid it, but the poor dear was really unhappy. Within minutes, she settled down and went back to sleep.
Claire and mom were off and running early in the morning to Claire's hearing appt. Her hearing aid had come back fixed and she was thrilled to go get it. Afterwards, mom had an appt, then off to Claire's dr appt for a weigh in. Meanwhile, she finished another 5oz of formula/pedialyte. Unfortunately, the dr's office called to say the dr was running 45 min to an hour behind, and they were wonderful enough to offer Claire an appt in the afternoon. Mom took it as Claire's dr appt was at 11:45 and her OT was at 1pm... and running an hour late wouldn't allow time to make the OT appt, and everyone knows what mom had to do to get that OT appt. With the cancellation of that appt, mom had time to make a few calls to Hospice to schedule Music Therapy and as the hospice nurse to meet her at the dr appt in the afternoon, during what would usually be the nurses home visit. She was excited to go meet Claire's dr.
During OT, the therapist tried to measure Claire for splits so she would keep her hands open. The OT wants Claire to wear them at night, but mom is thinking no one will sleep if Claire doesn't have a thumb to suck on, so she wasn't too sure about that, but does want Claire's hands to open more than 130 degrees. She had evaluated Claire about 8 months ago during the Children's home society's clinic, and noticed BIG improvements on Claire opening her hands and her new bottle (not only using haberman anymore) and was very pleased. Claire finished off a 6oz bottle of shake during the appointment.
After OT, which ran long, mom had Claire home for MT, which also ran over a little. Claire started another 6oz bottle of shake, and then off to the dr's office.
Claire's dr was in rare form. An entertaining guy anyway, but a real joy today! Claire's nurse met us at his office and mentioned to him that Hospice was talking about graduating Claire and wanted his recommendation. Among other things, he had a concern about Claire's next 'episode' and knew it could happen at a time when she would need hospice sooner than they could help, if she was not a patient. He said that Claire has ups and downs, but not actually plateau-ed, like you would expect before graduating her from hospice. He said they were good for the family and offered guidance that the family relied on heavily. He said everyone needed to sit down and weigh the pros and cons and see that hospice was needed still for Claire and her family and his recommendation was that Claire stay with them. Claire weighed in at 11lbs 8.5oz and 25 1/2" long. That puts her up 7 1/2 lbs in 3 weeks. It is a slow process but as long as she is gaining, the dr is content.
It was a busy day, but all in all a good one. In the evening, Claire finished her bottle and dad had a friend in town who came over for pizza night and even mom had a beer with her pizza. yum.
Claire drank most of a 5oz bottle of ped/formula and she threw up once (from the meds) in the evening after her meds, so mom gave them to her again adding Tylenol to the list, and then she was off to bed around 10:30pm.

Claire was up just after midnight. Mom didn't think hunger alone would wake her so early in the night, but fed her anyway, about 3oz of shake and put her back to bed. She was up again at 4am, working on a BM. Eventually, she was able to pass most of it, down another 3oz, then some Pedialyte w/juice and go to bed, mom fed her pedialyte w/juice hoping it would help her BM by morning. She also gave Claire another suppository.
Claire was up again and this time Dad took over and fed her, and watched her so mom could get a little rest. He got the kids off to school and came back and got Claire ready and took her. Meanwhile mom was able to get another hour or so of sleep in.
Claire had a great day at daycare, drinking well and even more at home. She had nearly 30oz today and went to bed around 10pm.

Claire had a nice day. She was up early drinking, but not too well, so mom showed her patience and persistence until Claire drank most of her 6oz shake. Then off to daycare.
Her brother and sister had their first full school-day of the year, and mom took pix quickly in the front yard as school started earlier this year and dad was running late.
Claire had 15oz there and finished off the last of her two bottles once she was home. In the evening, her cousin came to visit. Claire had a nice bath and drank another 8+oz during the evening and mom gave her some mylacon for gas as she had random cries. She fell asleep around 8pm, but mom had to wait until her meds were given to put Claire down for the night, so she was in her bed by 10pm. Claire finished just under 30oz for the day.

Claire was making noises during the morning hours. She was sucking on her tonge. Dad thinks she likes the way it sounds as she was doing it a little during the day too.
She was up late for meds, as everyone was up late last night. Church first thing, and Claire was very good in church, drinking a little and staring at her daddy a little when he was holding her.
Afterwards, the family went to a friends home, it was beautiful and she was still unpacking boxes, but they wanted to see the new place and were very happy for her.
Once home, dad took over Claire duty as mom took a nap. It was around 3pm, and she woke up around 6pm. Mom was a bit exhausted. Dad fixed dinner shortly afterwards, it was a steak night -- yum! And they got the kids off to bed quickly as it was getting too late. Claire sister slept until closer to 7pm, she was a tired girl too, and so pleasant to deal with in the evening when she's had a nap.
Claire didn't drink really well today, about 15 oz total, she slept a lot tho. The last three oz were pedialyte. Mom has been trying to cut down on the decongestant, but it looks like there's no way around it. She seems like she isn't hungry at all, but mom knows she needs to eat, and she really is hungry because once her head is cleared, she can really drink... it will be best to keep giving her the decon to be sure she gets enough to eat. Today was proof of that. Mom will add it to her morning and evening routine. If she is congested at night, she will wake up crying an not able to eat anyway, so clear Claire head means sleep all around.
She went to bed around 10pm. Could stay awake for one more drop of food.
Mom was up a little longer, updating the journal and catching some Olympics from Greece. She thinks the hype is much better this year and loves cheering on the home team -- go USA!

Claire was relieved today when mom told her that her family in central Florida weathered the hurricane well. The family will certainly keep the west coast folks in their prayers. sad.
Today was cleaning day, as friends were coming over for dinner. Everytime someone would call, they were invited. Mom got some margarita mix and rum runner mix, but didn't use much as everyone was busy filling up on hamburgers and hotdogs. The food was good and the children were plentiful, along with a few meltdowns as expected. Claire's sister had a rotten day, as she was quite the pickle. Her last time out was similar to her first... one of her parents saying, 'She's in timeout forever, you can let her out, but I'm not!'.
Claire's sister is a good kid, sometimes she just lets her temper or her fun get the best of her and forgets rules. Timeouts are often more for the parents anyway, aren't they?
Friends didn't leave until after midnight and Claire's brother had been in bed a while by then. Claire went to bed shortly afterwards, but not after eating more.

Claire was up around 1:30am, fortunately for mom, dad was up too. He thought she was congested and mom gave her some saline drops in her nose and dad sucked it out with the aspiriator, then mom gave her some decongestant, made her a bottle and went to bed. By the time she gave the bottle to dad, Claire was almost asleep. Dad couldn't get her to eat and in about 15 minutes he put her back in her bassinet and went to bed too.
Mom woke Claire in the morning. Gave her meds, diaper change, clothes change (as she is still sweating at night) and started her on her breakfast. The kids had orientation day today, her brother would have to stay all day, and her big sister only half day.
Dad took Claire in to daycare once she was all ready and mom had bottles and meds ready to go. Mom took kids to school and dad met them there. It was the usual craziness, but it was all so fun, seeing kids after summer, all tanner and blonder... and taller. Claire's sibs were excited about all the electricity in the air!
After sister's orientation for Kindergarten, she was back to her summer camp, last day... and mom back to work.
By 1pm, Claire was drinking well and resting too. Mom is so comfortable with her caregiver. Thank goodness. And no hurricanes blowing by the family's way today, they are truly blessed!
Claire drank nearly 26oz today, a banner day. Mom phoned her sister and parents throughout the night to check and see that they were doing well. Each sustained little or no damage from the reports they gave mom. She does wonder if they don't sugar coat things to keep her happy tho.

Claire slept fairly well throughout the night. She was up with a single cry once or twice, but didn't sound like she was hungry or in any need of anything, maybe a bad dream, like her shake was too cold. Mom let her sleep.
Luckily, it is a fairly uneventful day here. Even with a Tropical Storm coming right through town, it appears that everyone is business as usual. At 12:30pm, there is a light drizzle of rain outside, the storm is still about an hour away, er, the eye is anyway, and so not much damage is expected (yeah!).
Claire's sister had three shots this morning so she can start Kindergarten (tomorrow) and Claire's brother wanted to tag along, perhaps to be happy it wasn't him, and to see if she got a treat afterwards for being brave, he wanted in on that action. Rumor has it they went to McDonalds on the way back to camp.
Mom received a call this morning from the OT office. Evidently, there is no earlier appt except for the 30th, two days before the current appt. Mom would have to change OTs to get that appt, so she opted to just keep what she has. It seems agreement on everyone's part that mom has spoken with that there is a limit on OTs and PTs in Claire's town who deal with the Children's home society. It might be nice if they could contract with the hospital, but that is just a dream for Claire. When the insurance referal runs out, the Little Peanut will be really desperate then.
Claire was woken up by a mom packing meds and bottle. She drank really well this morning, about 6oz before mom had to give in and get her in a bath before daycare. Claire enjoyed her bath and mom fed her a little more before heading out the door.
Dad got a call from OT office saying they can get Claire an appt on August 18th! Mom is so pleased!
Claire drank another 10oz at daycare, then once home, she drank about 10 oz in the evening. She ended up close to 30 oz for the day!! Let's hope this continues!

Claire was up around midnight. Crying. Mom wasn't too sure what to think of it. She was pretty loud and dad woke up questioning if it was her teeth bothering her. Mom didn't think so as she didn't have her hands in her mouth and wasn't drooling. Mom thought it was a mix of congestion and constipation. She changed her diaper and sure enough, Claire was stopped up. Eventually, she passed her stool, meanwhile mom was trying to feed her, and she drank a couple oz, but not too much. Soon after she calmed down and the little thumb when into the little mouth and all was right with the world once again.
She didn't go to sleep, but seemed content, so mom put her in her bassinet and went back to bed, but didn't sleep. She checked on Claire about 10 minutes later and she'd finally started to close her eyes, around 1am.
Mom woke her in the morning for breakfast. She will have a busy day today.
Claire drank 6oz of shake and had a nice bath. Mom is still upset over the OT appt cancellation and if Claire can't see an OT until Sept 1, that would be a big loss on her part. Mom was on the phone this morning trying to contact the Family Service Coordinator who helps family coordinate services (duh) like therapies, etc. She had not luck reaching her. sad. So she will continue to make calls and see who else can help her get therapies for Claire. Her last PT appt was May 26th, 2 1/2 months ago, but I cannot recall how long it has been since an OT appt (likely March), and Claire really needs them.
The coordinator returned mom's call and said essentially that Claire is out of luck. Once the insurance referral runs out, Claire may not get further therapies because the children's home society is unable to track down further therapists for her. sad. Mom asked if there was any reason she should not be upset (as she was very upset) and the coordinator said, 'no, and I'd be very upset too'. sad. Mom felt it wasn't a very productive day.
Claire's hospice nurse and hospice family service coordinator came by to visit her today. They were so sweet, going over the checklist with mom to see if she had enough O2 tanks for Claire in case the electricity went out (and the concentrator wouldn't work), checking she had enough meds and had the emergency hospice cell numbers. Mom mentioned to them that if Claire was out of electricity for more than a day, the family would plan to leave town, and go where there was electricity. They agreed that is what they would probably do too (but in all honesty, mom is sure they would feel more needed here).
Music Therapy also came by, then mom was off to take Claire to her physical therapy appt. The appointment was quite productive and the therapist was ready to give Claire lots of goals. She will need to work on keeping her head straight and not bending it back. Also her back has a curvature to it, so she will consider seating for Claire to help her. Also possibly a stander, to help strenghten her legs so one day they can be strong enough to support her weight. They spoke at length about all the things that mom wanted for Claire, like grabbing a toy or a cheerio. The therapist gave Claire a rattle and she actually held it, slid it across the floor and even pulled it to her mouth. Mom was quite proud and really can see the potential for Claire to learn. She's hoping the therapist sees the same potential.
Mom was able to reach the OT today. The office told mom the first time she called that the therapist was over at the hospital. The second time mom called they said she was in with a patient. Mom left a message the second time on her voice mail. The therapist called mom and said she was in another town almost 2 hours away with her mom who was in the hospital. She was kind enough to return mom's call, but mom felt bad bothering her.
Claire, along with brother and sister, went for a hair cut. The Claire Haire was getting a little unrul-ee these days. Not to mention her brother hadn't had his cut all summer, he was getting big hair, but he loved his big hair. Mom hadn't seen such a pouty face on him as what she saw when he was gettin it all cut off. He looks like a nice little boy now... perhaps not the look HE was going for.
Claire drank 4oz of pedialyte (mom is hoping to avoid the BM cries tonight) and then 11oz of shake. Claire will work on one more bottle tonight and off to sleepyland. That will put her well over 21 oz, maybe even meeting her goal for the day. Let's pray for a restful night, as tomorrow Hurricane Bonnie blows into town. At least the second hurricane scheduled for us, Charley, won't be coming to see Claire... fingers crossed, no one can predict these darn things.