Claire's Journal -- 30th Month
September 10

A very busy day. Mom and dad worked on cleaning up what little they could. Claire's big brother had football practice at 8:30am, and baseball practice at 10:30am -- same field fortunately. Dad was working much of the morning and being very productive, mom was getting the food in Claire and giving her a bath and haircut. She was also cleaning everything out of the kitchen as she was expecting some sanding of the drywall to be taking place tonight.
Friends came into town for the football game and the sitter arrived around 3pm so mom and dad could go early to the game. The first half had everyone rethinking the talent of our team, the second half met all predictions of teamwork and left fans looking forward to the rest of the season. yeah!
Claire and her big sister were asleep for the night before mom got home, so it was a nice break for mom to be able to go straight to bed, and fun for the Peanut to have someone else playing with her.

September 9

Claire slept well last night but was up with mom's alarm and she seemed hungry. When mom picked her up she was a little sleepy, but soon the smiles came. Mom fixed her bottle, gave her meds and she slurped down most of the 5oz shake... a little thinner than usual as mom wants her to learn to drink thinner liquids through a bigger opening in the bottle.
Mom dropped her off this morning and realized her teacher was out most of the day before. Evidently it wasn't a problem as Claire has pretty much mastered the spoon feedings and so her feedings aren't much of a problem for most teachers. Her class has several 'Grandmas' who love holding her much of the day and even the afterschool teachers are usually enjoying playing with her, trying to get those not-so-elusive smiles from her. Once they see she is ticklish, it is hard to keep your hands off.
Mom mentioned to Claire's teacher that keeping her face clean and cool would quickly eliminate the rash on her face.

September 8

Mom took Claire to school today. Once they arrived, Claire was quickly changed into her swimsuit as her class was off to the pool. She is learning more and more to like the pool. Evidently, when they first started taking her, she cried, and now she just goes with the flow. The pool is indoor and heated and so is the air -- if you aren't swimming, you are sweating. It's a great temp so the kids don't get a chill before they are dried off and changed. So off the class went with a load of towels and clothes... off to the pool.
When mom picked up Claire, her teacher wasn't there. Evidently, she'd left early and mom expects that... mom noticed the food wasn't unpacked from Claire's bag and her notebook wasn't filled in with "Claire details" from her day. She was confident Claire had a good day and when she arrived to get her, an afterschool teacher was holding her. Her name was Claire also. Claire had a good night, she was home briefly for mom to make her some dinner then off to drop off big brother at flag football practice and then off to eat dinner with big sis and the 'rents (parents). She ate very well, finishing her bottle before getting home. Mom fixed another bottle and she drank half of that, had meds, then off to bed. Mom and Claire were too tired for Claire's bath tonight, so it will have to wait for tomorrow. Mom washed Claire's face well, as she is starting to get her heat rash again.

September 7

Claire slept well again for mom and had PT today. Her OT was cancelled. In PT, she fussed most of the time. She ate well in the morning, but mom isn't used to this new appetite where Claire doesn't go very long between feedings and always seems hungry... but mom is pleased and the PT thought Claire needed a break in the middle of therapy to eat... and eat she did. Still fussed a lot tho. She worked on holding up her head while laying on her tummy. She doesn't really like to do that either, but did it well on the big ball... about the size of the one she has at home, and mom will need to work on that at home too. Claire is doing great with her standing with mom at home... and the therapist worked on that a little too. Mom is excited about getting a stander for Claire, but the 'stander guy' hasn't been in touch, so mom is getting frustrated that Claire doesn't have one even ordered yet.

September 6

Claire seems to be doing great. She was in big need of a bath so she got one after meds and before breakfast and trodded off to school.

September 5

Claire had a fun day. She slept through the night and was up to play. Still having her wide grins, esp when her daddy wants to play with her. She ate well and in the afternoon a good friend came over to sit with the kids so mom and dad could go to the football game. Their team won and it was touch and go for a while, so they were in disbelief, but happy all the same. Mom checked on Claire once to see that she got her meds, then again to tell the sitter that she could put her down just after meds and Claire would go right to sleep, and she did, when mom and dad got home (very late) Claire was tucked in and mom got to go right to bed and to sleep.

August 29

Claire seems to be doing well. She was a bit congested this morning, so mom gave her a decongestant after her meds and about 4oz of pedialyte/bananas/duocal. Then off to school.

August 28

Claire slept through the night. She was up hungry in the morning and mom gave her some pedialyte, then some shake with formula in it. She liked it and then stayed home from church today while mom and big brother went. With the hurricane path changed, the family is relieved, but it is bittersweet at hurricane Katrina gains strength and will do unquestionably horrific damage wherever it hits.
Dad worked on the house today and got a lot accomplished, soon he will be installing a pocket door and putting up some drywall where he took out panelling in the kitchen.
The family went to Claire's uncle's home as a squall was going through so the kids swam in the pool in the rain (kids included dad too). No thunder so they had a lot of fun.
Still keeping an eye on the cane in the gulf and thankful for watching it on tv, and not in their town. Of course a storm that strong, they wouldn't be watching in town, they would have left days ago.
Claire went to bed well, but woke up close to 11pm, dad took her, but she was just way too fussy, so mom woke up and fed her a little, she was still crying, so she got some gas medicine, decongestant and tylenol. Mom put her back down and then dad got her again when she started fussing again. A very loose cough but no fever since Friday morning, so fingers crossed she's already on the mend.

August 26

Claire slept well last night (between mom and dad) and mom woke her for meds. She drank about 4oz of formula with pedialyte and a little duocal in for more calories... and after drinking, up came 4oz of formula with pedialyte and a little duocal in for more calories. Mom took her temp since she felt incredibly warm and she was at 100.0 under her arm. Mom called the dr, but he's out of the country until Sept 6, so after brainstorming with the nurse, mom thought maybe the NICU dr would see Claire if it really got down to her needing someone. She's resting comfortably with her Musini by her side.
Mom called the health plan case worker and she recommended going to urgent care today, but talk to the dr's nurse first. She also said that Claire couldn't see the NICU dr since he has not contract to see kids out of the hospital (who knew?!). Mom called the nurse back and the nurse said that within 24 hours we will know if she's gotten worse (high fever, no appetite) and then call the after hours nurse. Mom mentioned she was a little concerned with the hurricane coming on Monday, but the nurse said they would know tomorrow if she's gotten worse or pulled herself out. It was a relief, because mom was thinking a dr who didn't know Claire might give her an antib when she wouldn't really need one, and the nurse said at this point she really wouldn't need one. Mom also feels that since her nurse feels like she could turn this around in 24 hours, mom just has to really pump in the extra liquids and chest percussions, etc for a quick duration to help Claire pull it off. (er... get better soon, with out the antib's or seeing a new dr).
Mom and dad are trading off half days today (dad having the middle half with Claire) so they can each get ample work done today.

August 25

Claire slept well last night... a couple noises and some coughing, but overall everyone got some rest.
She went to daycare today after meds, decongestant and a little food, tho pursing her lips all morning as if to say, 'that stuff tastes awful, gimme something else'. She had about 8oz at her school and a couple more when she got home, but overall not interested in food and letting everyone know it... even spitting some of her food back out to really clue everyone in.
After school, mom went to get the Musini recommended for Claire by her therapist yesterday. Mom went to the store and looked over every toy twice... she asked the cashier who actually heard of them. Then mom went into the front window where some toys were piled up and under a bench, tucked far away behind some other toys, she found it! And it was reasonably priced and she was so tickled. She also saw a 'johnny jump up' that she though Claire could try out, and it was also on sale. Mom let Claire play with her new toy in her chair and she seemed amused.
Mom often feels guilty when she leaves Claire in her chaire... as if she's not playing with her all the time, then she's not doing everything she can for Claire... but there are times when mom needs a shower or needs to fix dinner, or clean up - and Claire isn't asleep... and she wants Claire to be entertained, or to entertain herself... so this toy seems like a great one for that!
In the evening, she had a fever of 101.6 - even getting a little higher. Thankfully the family has the night off from running around and Claire can just hang out with mom and dad. Mom gave her some Tylenol, but it didn't seem to bring the fever down as quickly as mom would like and Mom and Claire fell asleep with Claire on her chest on the bed. Mom woke up and put Claire next to her and they both went right back to sleep.

August 24

Claire has a busy day, and in the middle of it is PT and OT.
Today she will have a therapist who isn't her usual one, but it will be the second time she sees her as it is the same one she saw on Monday at her school. Her PT asked mom if she'd seen the Musini toy, and went and got it for Claire. It is a very cool toy... it plays music when Claire touches it, but the neat part is that the sensitivity of the touch can be adjusted. So if Claire isn't particularly 'spunky' she can just barely touch it (or move if she's next to it - the vibration will cause it to make music) and it will go on, tho briefly. Mom likes it too because it can play different styles of music and if Claire moves a lot, the beat of the music is faster, if she moves slowly, the beat is very slow. There's even a carnival theme and then a few different instruments that can be set as well.
Claire sat there rubbing her hand along the Musini and watching the lights. She was actually interacting with it and mom was very tickled. The therapist said that they had them in a local store pretty inexpensivly, but another mom went and bought them out. Mom was determined to go look again anyway.
At OT, Claire was working on drinking from a cup again. Claire was sharing her room with a little girl who was working on other therapy, and would come over and watch Claire drinking from her cup. When the little girl would come over, the therapist noted that Claire would put her mouth to the cup, suck in the liquid (apple juice the consistency of honey) and swallow... just like she was suppose to!! So the therapist called her over a couple of times. Meanwhile, the therapist also remembered from last week mom showed her that Claire was ticklish. Once you learn Claire is ticklish, you can't keep your hands from tickling her, and the therapist was addicted. Mom teased her that it was addicting to want to tickle her because that feedback from Claire is so amusing!
In the evening, the kids went to hang out with their uncle while mom and dad went to Parent's Night for Claire's big brother. Oh, to be a sixth grader again.

counting my fignersWhat's that up there?
August 23

Claire seems to be doing well. Noticed a little cold coming on and a little congestion.
She went to school to play with friends. In the evening, the kids went to a friends home while mom and dad went to Parent's Night for Claire's big sister... oh to be in first grade again.

August 22

Claire slept through the night, and when mom checked in her, she was on her back playing. She's been rolling from her tummy to her back a lot during the night, it may explain the random fussing, but not last night... she was quiet the entire night.
She was up drinking a shake this morning and had about 3oz, then was off to school. It had been a while since she's had a shake, she's been eating so well and so quickly with the spoon, but mom didn't have time to get the liquids AND the spoon feeding in this morning as the alarm didn't go off at all (problems with Mondays, you turn off the alarm for the weekend, then forget on Sunday night to turn it back on, just so happy to be finally going to bed :o).
Mom took the haberman bottle and shakes to school today for Claire with instructions that only the teacher would feed her form the haberman, and her teacher agreed. The shakes can be thickened for spoon feeding, but they didn't seem to use the formula for just drinking, so mom thought she'd just send pedialyte/water in the haberman for drinking (getting in the fluids) and gave Claire's teacher a quick lesson in haberman use. She seemed fascinated by the bottle, it is a neat little gadget, that is for sure!
Mom is very pleased with Claire's new school and feels very lucky to have Claire going there! They have 2 nurses on staff who will check her lungs every day. Last week they said her lungs sounded clearer towards the end of the week, so mom was happy to hear that (they sent home a report from the school). The nurses will also be dispensing her meds at 2pm, and that's nice for mom so she doesn't have to premeasure the meds every morning or worry that it isn't being given (tho she will still worry :o).
Mom saw one of Claire's previous therapists who sometimes sees her still, and the therapist is at her school once a month, going over things with the teachers and answering questions and evaluating the kids. The therapist said that she would see Claire today and mom mentioned that Claire only had one PT appt (due to the timing of getting appts this month) and so they agreed that it would be keeping with Claire's plan for her to see her anyway.
Mom's hoping for some feedback from the xrays taken last week of Claire's chest.
Mom found out at 4:30 that Claire's big brother has a game at 6pm. The whole summer baseball league has been a complete disaster as far as scheduling -- the family gets word pretty much the night before a game, no schedule ever issued, just a mess, as if their lives aren't already confusing. But this league was layed back (schedules being a perfect example of that) and since it was Claire's brother's first time playing, it was a great place for him. Mom went from work, got Claire and went to the game in long pants, and it was hot! Claire did well in the heat, and they left early. Mom kept putting water on her little legs and face and she didn't seem to mind and was full of smiles!

August 21

Claire was up for feeding and for Church. She was very squirmy in church, not her usual cuddly self. Her brother held her for a while and then her sister too, who seems to enjoy the attention and then declares 'all done' and all but lets go of her. Needless to say, mom doesn't ever let go of Claire when sis is holding her. Shortly after holding her, mom noticed Claire's sister had cut her hair. Yep, the bangs were between 1/2" to nothing. Mom had just brushed her hair before going out the door, and sis must have slipped upstairs, gotten out her scissors and taken care of business very quickly. She absolutely loves her new look - no bangs. She just had her hair cut days before school started, so it couldn't have been in her eyes. Since mom didn't notice until middle of church, it was kinda hard to yell at her, adding hard to keep sis from crying as she sensed that mom was angry with her. Guess everyone does it?
After church is was more 'room cleaning' for Claire's sister, and finally, it was cleaned - but not until close to 6pm... and everyone went to Claire's uncle's home for dinner, but no swimming as it was just too late -- not to mention the thunder and lightening.
Claire's uncle spoon fed her a little bit during the evening and Claire fussed at him a few times. He fed her very very tiny amounts at a time, so she did pretty good. It was, as always, a nice visit.
Once home, Claire ate about 7-8 oz of food, plus another couple oz of pedialyte, she had a low temp of 99.5 under arm so mom gave her some tylenol and put her in bed... she went to sleep rather quickly.

August 20

Claire had a good night.
Dad got some much needed work done downstairs with help from friends and Claire and mom hung out and mom cleaned up what she could, putting laundry away and sweeping... while big brother played quietly in his room, and big sis worked on cleaning her room - not working too hard on it as it was still not cleaned by the end of the day. Mom announced there would be no swimming at her uncle's home until the room was cleaned, and that prompted massive crying (from sis), but motivation all the same to get it done tomorrow. We shall see.

August 18

Claire fussed briefly a couple times during the night, but not too long, so mom didn't get up.
Mom was up early showering and getting Claire to school before breakfasttime. Claire had 3.5 oz of milk before leaving for school. They like her there at breakfast so she can eat with the other two-year olds.
Mom took pix of her teacher feeding her. Claire seemed very hungry and mom mentioned she would probably eat up to 8oz of cereal this morning.
Today is two weeks since Claire's been out of the hospital, she seems to be doing well. The xray tech said it would be 2-3 days before the xray results would be 'in'.

August 17

Claire was up once, and mom checked on her... she was fussing and mom didn't know whether to get her up and feed her, or see if she'd go to sleep on her own. Eventually, she went back to sleep.
She slept in a little bit and mom got her meds, formula and food ready, then sat her down and fed her. She did great, eating around 3oz of formula (with pedialyte in it for good flavor -- seems to be the only way she will drink her milk) and then going right into breakfast. She ate a couple oz, took a little break, and then finished off another 5-6oz of mushy cereal. The cereal is a combination of formula, rice cereal w/bananas, duo-cal and a sprinkle of powedered isomil for added calories. Sometimes mom even splashes in some olive oil and mixes it up really well, but basically that is what is in her mush (cereal). She took a nap and mom got some work done.
Claire had her OT and PT appt. Her PT was good, they met with a man who will be exploring types of standers for Claire. Mom is thinking the 'standing dani' as she knows that Tierney has one, and Tierney is 2 months younger than Claire and doing well with that stander. The wheelchair guy is thinking the 'gazelle', as that is the one he typically works with. The dani will be much more expensive, but will be suited for her for a longer time. Guess we will see.
At OT, the therapist practiced with a cup for Claire to drink from. They used applejuice the consistency of honey. Claire eventually seemed to not mind it, but did mind the cup, so she didn't go great, but it was her first time, and it will take much practice. Mom is hoping that the consistency will eventually be more fluid and Claire will do great with a cup and regular drinking. They also experimented some with a straw. The therapist had a 'honey bear' bottle that they cut the top off of far enough down on the spout that a straw fit into, so that way the liquid could be squirted up if needed, so Claire could see that something was coming from the straw. It was quite and an experience for the peanut today.
Afterwards mom had a dr appt, fortunately it was in the same building (even across the hall) from the xrays, so Claire had that done too. After all that, mom was hungry and got a bite to eat, then picked up the kids.
Once home, mom got more work done, and Claire hung out, the kids played. Dad brought home dinner and everyone was in bed by 9:30pm (the sibs were down by 8:30pm).

August 16

She was up much of the night, and dad was up with her. He was not a happy camper in the morning, she wanted to sleep in. Probably from the shots yesterday.
Got an email from Claire's ped today saying that once the antib is gone, not to get another presciption, since it could do her more harm than good in the long run being on the antib's for so long. He has confidence that she will continue to do well without continuing her on it.
Claire's second day of school. She had a good one too, seems to really like it there and her teacher says she's smiling a lot.

August 15
15lbs 4oz

Claire slept through the night. Claire and her new teacher - ready for breakfast!
It is first day of school gitters for most, esp for mom. She has one baby going into a new school, a public school.Another baby going into first grade, and another child starting middle school, lockers and all. She's too young to have a child in middle school, or at least, that's what she keeps telling herself... just keep thinking that way mom, maybe your youth will come back.
Mom picked Claire up early for her late afternoon dr appt. She weighed in at 15lbs and 4oz. Mom really thought with the duo-cal that she would weigh in higher, but it all takes great patience. He eventually decided to discontinue the antibiotic after the bottle was empty and get a chest xray done to see how she's doing visually. Mom got the paperwork, but it was close to 5:30pm before they were out of the office. Claire got a chickenpox shot and mom got an updated shot record. She also go an updated prescription for her anti-seizure meds.
Claire fussed a little at night, but went to bed, and mom took advantage of the opportunity and gave the peanut a little mylacon and mom went to be herself.

August 14

Claire slept through the night.
She was up for church and then off to visit her uncle so the kids could swim. They had dinner over there and dad joined them for dinner. It was a nice relaxing day.
Tomorrow is school and mom thinks everyone is ready -- fingers crossed all goes well.

August 13

Claire slept well.
She and mom just hung out most of the day, cleaning up after dad who is working on the kitchen.
Late in the afternoon, mom packed up the kids and they went to Claire's uncle's house for a small party. Claire stayed inside much of the day as it was very hot, tho she did enjoy a toe-dipping in the pool.
Dad was home working and running errands, he stays so busy. In the evening, everyone was home and bathed before bedtime.

August 12

Claire slept right through the night. Got up and ate about 7oz of mush before heading out the door to the sib's orientation, which took up much of the morning. Afterwards, mom took Claire's big sis to camp and big brother stayed for a full day of school. Mom headed back to work, but soon had to go to Claire's orientation for her new school. Mom and dad met some of the other parents, and Claire's teacher carried Claire around while she spoke with other parents. It was a small gathering and mom is very excited. Whenever she starts to mention something, the teacher finishes the sentence, as if she already knows Claire, but mom is sure she just knows so many children like her, that may as well know her. Claire's new teacher said she has never had a T18 child before, which amazed mom, but given her background, Claire seems in very good hands. After orientation, it was time to pick up the kids, since there was no afterschool today for them, and then back home for another meeting. whew.

August 11
29 months

Claire has been sleeping through the night lately.
She was up once last night, and mom just put her on her back and she went right back to sleep (oddly enough).
Mom's been swamped with trying to get a lot of food in her... even moreover a lot of liquids, and tho she's interested in the food, she isn't too big on bottles anymore, so several folks have suggested going straight to cups... mom is hesitant as that could invite aspirations leading to pnuem, but she will consult with the professionals on all that. Claire ate over 8oz tonight of food and maybe an oz or two of pedialyte too... mostly squirting it back out at mom.
She had a nice day today, going to realtor training as dad was giving a presentation, and then off to physical therapy. Later, mom came home to pass the batton with dad and he had the kids getting haircuts while mom fed Claire more and got some work done.
Mom realized that the orientations for the schools are during Claire's dr appt (follow up from hospital) so mom had to reschedule the dr appt -- afterall, schools don't reschedule appts.
Things are looking good. Kids have uniforms for school, Claire is on the mend (fingers crossed) and the kitchen is in disarray due to renovations (new cabinets) so mom sees the good in it all... kids start tomorrow for orientation, should be a crazy day, even Claire has orientation at her new public school tomorrow! Mom is off to bed, late as usual, after a few updates for kids' school's website. Life is good.