Claire's Journal -- 27th Month
June 10

Today was a busy day, kids were off with the sitter having big fun, and mom and dad were off to work. In the evening, friends came over and brought chicken fingers from Zaxby's, mom's latest favorite wing place. It was fun hanging out with friends and the kids were out in the yard trying to catch fireflies and playing games. Evidently, they were using a watch for one of the games, and mom was listening to them play and heard, 'Time out, the watch is broken'. She giggled and commented that she thought there was a pun in there somewhere. Big storm Arlene is going to the west of Claire's house, and coincidentally one of the friends visiting tonight was Arlene, so they had fun with that name all night. Tomorrow is expected to be rainy and windy. Should be a nice day for staying inside.

June 9

Claire had a good night. She was up early.
Mom got up early to get her breakfast ready and Claire was hungry. She ate about 3oz of cereal and still seemed hungry, but she fell asleep on her way to daycare.

June 8

Claire had a good night and a good day.
Mom started her off with fluids as her diaper was dry in the morning. Then Claire played with her big brother and then she fell asleep until just before PT and OT. Mom fixed a bottle, woke her and fed her some shake... then off to therapy.
Claire's new chaire arrived today. It is a Bumbo. It is cute and light (like Claire). Mom took the Bumbo to Claire's therapy where her therapist tried her out and noticed the head support wasn't there for her, but mom felt her head support was nearly good enough, and she would only use the Bumbo under supervision. Claire's head support has come a long way and all during OT she kept her head straight and everyone was very impressed (guess she knows she needs to do that to use her new chaire).
Claire ate more when they got home and the hospice ladies came by to celebrate Claire's graduation. They brought balloons and gifts and knew that this was a great time in Claire's life. It was joyous and sad at the same time, as closing any chapter is. They each took time to hold Claire and play with her, they are truly special women and mom is proud to have had them in the family's lives.
Thank you so very much Hospice for all that you have done for Claire and her family!!

June 7

Life is Good!Claire slept through the night. Mom got a good night of sleep.
Mom noticed Claire moving around this morning. Claire had her eyes still closed, not too sure if she wanted to wake up or not. Mom called her name a few times and spoke to her, Claire eventually lifted herself up on one arm (tummy down) and worked hard to open her eyes. Mom picked her up and got many smiles! Claire layed in bed with dad sleeping by her for a while while mom got showered, dressed and got Claire's breakfast ready.
Claire ate about 3-4 oz of cereal by spoon, then off to her bath... she needed a good soaking this morning. After bath, she fell asleep in her carseat waiting for mom to get her diaper bag ready and get out the door this morning.
Mom got a call from Claire's hospice nurse this afternoon. Evidently she heard that Claire had already been discharged from hospice by Claire's insurance... and that it all took place on May 25th. Claire's family service coordinator didn't know about it and Claire's dr didn't know either. Mom called their healthplan, and spoke with a woman she had previously spoken with. The previous conversation determined that Mom would need to speak more with Claire's dr and hopefully have a plan in place... the woman said it wouldn't happen soon and that mom should think about it a little more.
Evidently, when mom called the healthplan today, the woman insisted that the previous discussion confirmed that Claire would be discharged from hospice without further notice. Sounds like two completely different conversations. Mom was very displeased that she was not consulted further on the discharge; there was no plan in place for how oxygen, medication, etc would be handled -- things that hospice took care of for Claire, and certainly no date was discussed. And now it was revealed in hindsight. Hospice and Claire's dr did not seemed pleased with how the healthplan handled this either.
Mom has mixed feelings about Claire's discharge, and tho she will miss the hospice family very much, she is happy for Claire and the family and drs will get on with helping her future rather than worrying about it. Not to put a wet towel on this awesome news...
Not too many people can say that! Gooo Grrrl!!!

June 6

Claire slept through the night for the most part.
She had a fun day at daycare with a break for PT. She stood a little(assisted) for her PT and got a good bunch of stretches in. Later in the evening, mom was holding Claire while working on the computer. Claire fell asleep in mom's arms as mom worked and dad came into the study with a really good story that started with a big clap of his hands... at that clap, Claire JUMPED! Coincidence? Guess it's possible.
Mom almost started crying... She can Hear!!! No hearing aid.
Mom felt all along that around 2 her hearing would be much improved as she'd heard stories of other triers ears opening up around then, enough for them to pull off their aids. Guess mom needs to set up another hearing test to see what's going on now. Mom and Claire got to bed before 10pm, but not bath for Claire and not bottles made.. mom was just too tired.

June 5

Claire had a good night.
Dad called early this morning from Chicago, his flight was coming in earlier than expected so mom cleaned up the kids and off they went to the airport to get him. Afterwards, the family went out to lunch and home for much needed bonding time.

June 4

More kisses mom!Deliriously happy kid!Claire had a good night.
Dad called frequently to check on everyone and it was a lazy day. Mom took the kids into work in the morning as she had some files to move and check. Afterwards, it looked like rain and time for a nap for Claire's big sister. She didn't really nap, mostly just layed in bed asking every 5 minutes if it was time to get up yet. Mom got more work done and some play time. The kids were well behaved and Claire ate pretty well, tho not as well as she had been.
The family went to mass this evening as they will pick dad up from the airport tomorrow morning. Everyone was in bed early except Claire's big brother who stayed up to watch the College World Series baseball as FSU played Auburn... hey, it was Saturday night.

June 3

Claire slept through the night for the most part.
Mom woke her up in the morning, but in a fairly big hurry to get to work, so Claire only drank a small part of her bottle and was swept out the door after meds and clothes/diaper change and face washing.

June 2

Claire didn't sleep through the night. She needed a 1am bottle and drank 2-3 oz of shake and went back to sleep. She had a really good day.
She was up early and had 4-5 oz of cereal before heading out the door. At daycare, she had another 14oz including 4oz of cereal at lunch.
Dad left today to go to Michigan for his niece's high school graduation. He went with is brother and they will likely spend time in Chicago at his brother's fiance's sister's home (get all that?).
In the evening Claire had an early dinner(4 more oz of cereal) after finishing up another 2-3 oz of shake. Everyone was in bed at a reasonable time. Claire was talking most of the evening, wishing for some attention and usually got it, as she was loud.
Mom got a call in the evening from a foundation that grants wishes for termally ill or disabled children. It was an odd phone call, not odd that they were asking for money, but that they were offended when mom wanted to check out the organization before pledging any money to them. The conversation ended with mom telling them she wanted, at the least, to get the website address, and the woman on the other end (who didn't let mom get in the conversation once) told her the website and essentially hung up. This was not any org mom had ever heard of... NOT "Make a Wish", but they sounded close enough that folks may think they were Make a Wish... mom noted that the phone number was from a marketing company, and not from any childs-wish making company. And they have no idea that about mom's special baby, with all her little problems. Once the woman heard Claire talking she said, 'I hope you never need us'... and kept going on... mom didn't/couldn't say anything to her. She obviously lives in another world from Claire's.
Mom did get to talk to Ryan's mom for a good while over the Internet (for free) so that was big fun. Sharing pictures and learning about family. Ryan's mom even got to see Claire sitting and falling asleep. (video was set up too).

June 1

Claire had a terrific PT and OT session. Dad took her and raved about what a great time they had!
No word from Claire's nurse to see if she is coming by. Claire's MT called, but mom was unable to return her call before 5pm and knew she wouldn't be in the office then. Mom was able to tie up a lot of loose ends at work (from home) and go to an awards luncheon. It was the second year mom received a productivity award. Everyone had a nice quiet evening at home and mom and kids were in bed early while dad was up a little late. Pizza night tends to mean early bedtimes... no dishes or cleanup.

May 31

Claire had a nice day.
Everyone back to work today, and the kids have a sitter who will come to watch them over the summer. They seem pretty excited about that, and randomly have friends over to break up the days. Also they will have some weeks at summer camp, but for the most part, everyone is just trying to set up a routine for the summer after a gorgeous and fun weekend at the beach.
Claire was at daycare, and mom picked her up after work and when they got home, the kids and sitter were under a table surrounded by blankets and pillows playing monopoly... very kewl. Claire's sister was trying to learn about money, and buying the properties her older brother needed for houses.

"I'm too cool for school""Hey, anyone got s'more sunscreen?""I'll take a little power nap now and keep mom up all night -- quality time""Hey Grandma, you still there!"
May 30

"I'm so pretty... okay mom, off with the hat, enough pix already!"Claire had a good day.
She was up early (sunrise -- around 6am) and eating... mom was a little too tired to make cereal so she heated a shake and Claire drank 3oz and went back to sleep. Mom was up by then, tho she tried to go back to sleep, hotel rooms with an awake 5yo means little or no sleep... even with a pillow over your head.
The family packed up the truckster and headed back home after an exhausting weekend. Mom had a terrible headache (which she very rarely gets - even any headaches), so she took an asprin/decongestant and went to bed... and woke up 3 hours later. Claire slept for much of that time too and so did Claire's sister. The fun and sun can really take a lot out of everyone! In the evening, mom started cleaning some and getting ready for the work week.

..patty cakes..."more food please or the fingers GET IT"finished eating, now... time for my afternoon nap..."hi Mom... I see you with that camera again..."
May 29

Claire had a terrific weekend.
She had two meals a day by spoon and in the mornings ate as much as 6oz of cereal in one sitting.
She spent her days on the beach under an umbrella, waking around 6am and getting on the beach after sunrise and after a big breakfast. Mom brought down pedialyte to keep her fluids up and for Claire to nibble on during the day. Just before noon on Sat and Sun, Claire would go up for lunch and a nap, along with her sister. Around 3pm, everyone was up, slathered with sunscreen and ready to hit the water.
In the evenings everyone gathered for dinner and hung out. Mom and the kids went to bed rather early, as they would likely be up early in the morning again. Everyone was exhausted, even Claire's big brother layed down, and no one asked him to go to bed.

May 27

Kids were up early and ready for their weekend at the beach.
Dad had plenty of loose ends to tie up, so the ETD of 9am was moved back and back until 3pm, when everyone finally got out of town. It was a gorgeous night and everyone really enjoyed lounging int he cool fresh air. Mom had on a sweatshirt, and Claire a small blanket to keep her warm. Everyone got to bed pretty late. Claire was up twice during the night, so rest was elusive for mom. A nap tomorrow would take care of that, and a good night sleep (hopefully) tomorrow night.

May 25

Claire didn't quite sleep through the night... once again she was up around 1am... didn't seem hungry so much as her teething seemed to bother her... after mylacon, mom gave her some advil and eventually she settled down and went back to sleep. She made random wimpers throughout the night, but every time mom checked on her, she was asleep.
She was up nice and early, hungry and letting everyone know. Mom fed her about 4oz of cereal after her meds and then Claire fell sleep.
Mom was able to get a lot of work done in the morning and then off to PT and OT where Claire had a good therapy... she is getting better at sitting up and working on her standing. Even her PT sounded more like she was going to start getting more aggressive working on getting Claire a stander. OT was good too, no great strides, just a lot of hard work for Claire.
Claire ate in the afternoon and the hospice family coordinator paid her a visit. Much of the talk was about Claire graduating from hospice. Claire's big sister had a gymnastics/dance recital soon after hospice left so Claire, mom and Claire's sis were out the door to meet dad and Claire's brother for the recital. It was quite amusing. Mom of course has most of it on video. Dad had to go back and get some work done and then brought home pizza... pizza night you know. Claire fell asleep during dinner.

May 24

Claire slept through the night. She had a good night.
Mom had her up early and her hospice nurse came by to check on her to give her approval for daycare. She said Claire sounded much improved, tho still a little gunky. Keep her on antib's until they run out and keep with the nebulizer and decongestants.
Claire had a good day at daycare drinking 14oz after eating about 5oz of cereal in the morning and then going to sleep because mom took too long to get ready to go.
Mom picked Claire up after work and everyone got home in time for dad to decide the family should go out for dinner. Mom was all for that. Claire ate really well when they got home (after sleeping through dinner) and she was ready for bed... or so mom thought. After being in bed long enough for mom to get relaxed, Claire decided to get up... But eventually she settled herself down. Had had been out getting some stuff from the office and once he got home, he came in and took Claire out with him to see if she wanted more food, or just cuddling. He returned her shortly afterwards as cuddling was likely enough for her.

May 23

Claire didn't quite sleep through the night. She was up again at 1am, hungry... she drank 4oz in 12 minutes and went back to bed and quickly back to sleep. Just needed that post-midnight snack. She hasn't had a fever in a few days tho she still sounds congested and has been sleeping a lot. She slept in and mom woke her late for meds. Dad was staying home with Claire's sister who is off all week (since the 'grader' has graduated from Kindergarten, she's out of school early for the summer -- not something mom agrees with).
Mom fed her a bottle and was off to work while dad was getting home from delivering Claire's brother to school this morning. Dad had errands to run at lunchtime, so mom was back home watching the girls for a bit while he got 'out' and then he was back home so mom could get back to work.
Claire has PT tonight so they will regroup and determine who needs to be where in order to pick up brother and get Claire to PT and watch Claire's sister. Life is good.
The family had a nice evening and when the day was done, Claire had 35oz of food (combination of shakes, pedialyte and cereal).

May 22


Claire slept through the night. She was up for church and well behaved for most of mass, especially since she fell asleep before the half-way mark and the tired little peanut also slept most of the afternoon once she got home. Dad had an open house and mom made cookies for him and got him out the door.
Mom took advantage of Claire's nap and got Claire's sis to take a nap and then took one herself. Mom seemed to be trying to get a cold, so she was willing to sneak in any sleep anytime anywhere possible.
Later in the day, everyone lounged around the house. Dad made dinner and mom fed Claire more and more... as if she were going to pop!

Claire was in bed by 9am so mom could watch Desperate Housewives... but Claire wanted to watch too, and she was up for most of it, eating. She was back to sleep by 9:30 and up again at 11pm. Her daddy came to get her as he was up working... and then put her back to bed soon afterwards.

May 21

Claire was up at 4am and drank 4oz of shake. The little peanut was very hungry and she's been drinking rather quickly when she's hungry like that, so mom was back in bed in about 20 minutes. The antibiotic seemed to kick in as Claire's throwing up and fevers seem to be subsiding. Yeah!

May 20


Claire slept through the night. Mom was up a few times checking on her to be sure she didn't have a fever and be sure her cannula was in her nose. She sounded congested so first thing in the morning mom gave her meds and then a decongestant (along with her antibiotic and some advil to keep that darn fever away)... so she was pretty full by the time her bottle made it to her mouth (hehehe). She drank 5 1/2 oz.
She's been so hungry today.
She ventured out to her big sisters 'step up' from kindergarten to first grade and her last day of school. It was fairly quick and then she was back home with sis and dad for the rest of the day. Mom was off to work.
By 5pm, Claire had over 22oz of pedialyte mixed with banana/rice cereal. There's calories in that but no milk so that should help with her congestion. Her color is very nice today and she was talking up a streak with her grandma on the phone tonight (just like her mom).

May 19


Claire was up most of the night throwing up and trying to get her temp down. Mom was up with her... cleaning up and wringing out wet washcloths... probably NOT teeth.
They were up from about 2am until after 5am, when Claire still had a little fever, but it was down considerably from the 102 (under arm so you add one more degree).
Dad kindly let mom sleep in and took her car up to get worked on, then he went and paid Claire's daycare for the week, tho she likely won't be back there this week. He picked up her antibiotics on the way home, and mom didn't ask him to do any of that (except the daycare check)... he's so sweet!
Mom gave Claire a dose of the antibiotic, once a day. The dr kindly ordered Claire the zithromax that seems to work so well for her, and it's been a while since she's been put on it, so that is good too!
Claire was still throwing up and had a fever just before mom had to leave the house for the school for a teacher reception that she had worked so hard to help organize. Claire did fall asleep just before mom left and she drank about 4 oz (not too sure how much was kept down) of pedialyte mixed with rice/banana cereal. The reception ran like clockwork and mom was very pleased and went home to check on Claire once more before going to work. Claire seemed to have broken her fever -- yeah -- for now. She is still laboring in her breathing and still on the O2 machine to help her out but she seems very hungry! In about 5 minutes she drank nearly 2oz. Mom started her on another bottle when she got home as Claire was nice and cool and awake. Dad took over so mom could get back to her busy day.

May 18


Claire had a mild fever late in the morning - probably still teeth as she has a new one halfway between her front teeth and her back gums, and MT came by to sing to her. She was cool after a while and mom decided she could go to PT as long as they worked her lightly. She did a lot of stretching, since she was wiped out, and her PT was happy to see her relaxed for her work out. Her OT appt was evidently cancelled and mom wasn't informed... life in the big time! Claire had fallen asleep anyway, so mom let her sleep a bit and got caught up on calls before heading home. Claire continued to sleep and mom got some work done and was relieved by dad as mom had an afternoon meeting to go to for work. While mom was in the meeting, the hospice nurse came to visit Claire. She recommended putting Claire on O2 and said her lungs sounded congested. She spoke with the dr's office who called in an antibiotic so if Claire continually got worse, she'd have something mom could just pick up over the weekend.
Pizza night and Claire spent much of it throwing up her shake on her mom. Mom thought she should rethink what Claire was drinking if she was going to be wearing it so often -- she opted for Claire to get pedialyte with banana/rice cereal. At one point, mom called dad to ask for a little 'help' but realized there was little he could do for her, besides getting Claire's bath ready. The temp was at 101.5 before the thermometer came out from under her arm as she was spewing. The throw up was so hot mom could feel it on her legs almost burning. She new it was time for another bath.Mom had Claire on a towel on her lap, but Claire not only hit the towel but made a mess of mom too, so mom put her on the floor, took a shower and when she got out took her messy little peanut (who dad monitored as she may still have some left in there to come out) and got Claire cleaned up. Meanwhile dad was changing sheets and duvet covers. It was a hectic night and mom was only happy that her work was done for the teacher retirement reception in the morning at Claire's brother's school... his teacher is retiring this year and everyone is more than sad to see her go. snif.
Claire and mom finallly went to bed around midnight. Shortly before, mom had given Claire tylenol and then motrin when the tylenol didn't kick in for her Claire's fever. She was just way too hot for way too long... it was scary for mom, even the bath didn't bring it down enough to keep it down for mom's peace of mind.

May 17


Claire slept through the night. She had a good day and her fever seemed to have disappeared. Mom is glad, must have been teeth. They will keep an eye on her temp and if she doesn't have one all morning, dad will be taking her into daycare. Mom has a quick errand to run at the kids school this morning and then she will be off to work.
Claire had a great day at daycare. She drank 7oz, but hadn't been there the whole day so it was an okay amount for her. She ate pretty well in the evening and in bed by around 9:30. Mom was up a little later tho, working on cookies for Claire's brother's class to celebrate his teacher's proclaimed day as she is retiring. They call her Mrs. A, so mom made cookies out of her letter A cookie cutter... and was up past 10:30 doing that, then up later cleaning up... in bed by midnight.

May 16


Claire slept through the night. Mom was pleased as she seems to be doing well (knock on wood). She had her usual day of going to daycare and spending the evening at home with family. A friend came by for dinner that was a nice time for everyone! Dad had two closings today, so a celebration was in order.

May 15


Claire slept through the night. She had a fun day, first going to church with the family and being a good quiet baby during mass. Afterwards, she played in her chaire and drank pretty well throughout the day. Dad kept an extra eye on her all day as mom was working on a present for Claire's brother's teacher who is retiring. Claire had a nice evening and was in bed fairly early.

May 14


Claire had a good night and mom is so proud of the all the strides she's been making. Haven gotten out of the winter months, Claire is in a 'good place'. Mom spent much of the day working on a project and Claire just kicked back and enjoyed the day. Dad's band sang in a wedding tonight, so he's out and about doing his wedding singer thing (oh he'd hate that we put that down in writing! -- especially since his band really doesn't do weddings).

May 13


Claire slept through the night. Mom quickly got her ready as they had to be out early in the morning. Mom is helping with the DARE graduation this morning (Drug Abuse Resistance Education) and so Claire will arrive at daycare extra early. Then mom back to work.
Claire was home to meet her hospice nurse for her bi-weekely checkup. She weighed in at 15 POUNDS !!! That's nearlly a pound that she'd gained in the past 2 weeks!! Mom is very proud1!

May 12


Claire slept through the night. Mom woke her for her meds, bath and bottle. She slurped down 4 oz and was ready for more. Mom took her to daycare and she was all smiles along the way with milk coming out of her mouth (hard to keep it in when you are smiling so big). Claire was in such a good mood this morning and happy to be going to her daycare.
Claire did great at daycare drinking 14 oz and having another 6-7 at home. She had her meds and went right to sleep tonight. A fairly uneventful night (esp compared to last night) and we love uneventful too!
Dad's band played tonight, so mom had a quiet evening with dad gone and the kids in bed (translation - mom in bed early!).

May 11
26 months


Claire slept through the night like again, and had another banner day. She was eating so well, mom lost count, but subtracted the number of bottles Claire went through and figured she had at least 3 8-oz bottles during the day.
She had a great PT workout and was both tired and hungry, which worked out well since she had OT afterwards and she worked on eating. Claire zoned out a few times, just from being tired... tho she had a great early nap in the morning, she is still trying to recover from the big weekend.
She had music therapy come by too, and that was neat. The kids got a little music lesson too, as they had half day and were home. MT brought by a chaplain who wanted to visit too, he was pretty neat. After MT, mom ordered pizza and dad got ready for band practice. His band will play tomorrow night for a store opening in town. Claire was ready for bed, but still a little fussy so mom held her until she was very tired and finally went to sleep in her bed. Everyone seemed a little grumpy tonight, so an early bedtime was in order.