Claire's Journal -- 31th Month
October 10

Claire was up in the middle of the night coughing again. Mom went in and put her on her side and she quieted down until monring, when she started coughing again, mom did the same thing and then went to get her some food. She ate about 4oz after drinking an oz or two of pedialyte, then mom got dressed and Claire napped just before the trek off to daycare and work.
Dad picked Claire up and took her to PT today... he said she did really well and her daycare said she's been eating great.

October 9

Claire was up starting around midnight and until she finally tired out around 4am. Mom was up and down as Claire was coughing and coughing. Unless he was on her side or tummy, she wasn't going to be able to sleep. Since she's rolling over so well (and so proud that she wants mom to come and see everytime she's on her back), she doesn't stay in a position that allows her to sleep well. On her back, mom thinks, her drainage goes down her throat and tickles her, so she coughs and coughs and it is so pitiful and nasty sounding, esp when it sounds like she's gagging. Mom goes in and puts her back on her side or tummy, and 20 minutes later, Claire is coughing again.
Mom has the humidifier on, but needs the ceiling fan on too, or Claire will sweat. The O2 is on blowby again and after mom put some water in the O2 tank, and turned off the fan, Claire seemed to settle in, tho she also go pretty sweaty in the process. Claire woke up to a nice messy diaper -- mom was so proud. It was likely because she ate so well yesterday, hopefully if this keeps up, she will be gaining weight again real soon!
Clair had a nice big breakfast and pedialyte (about 4oz of each) and then off to church. She slept for a good part of the mass, and a little more in her kimba when she got home. Mom fed her a few more oz of food when she woke up, and then more again later at Claire's uncle's home where the family went for white chili - yum!

October 8

Claire had a banner day!
Mom dad and big brother went to a ballgame today, it was a noon game, so they left fairly early and Claire had eaten so well mom had to fix more food for her before she left at 10am. When mom got back, the sitter was still feeding Claire. She had over 8oz just since mom had been gone, and that doesn't include the almost 6 she had before mom left. In the evening she ate even more and was a fat and happy girl! Mom was proud and getting in the fluids when possible.

October 7

Claire slept through the night. Mom was up early and showered then got Claire up. She was wide awake.
Mom fixed her food and got in the shower after giving her a little water and meds. Dad took over and fed her, then changed her diaper and put her in her carseat.
Mom whisked her off to school, but not without incident. Claire had a seizure on the way to daycare, and followed it up with a nice lot of throwup... as mom was driving... in her new carseat. Guess you could say she wanted to break it in. Mom was a bit upset, more over the seizure than anything else. Mom saw the throwup coming and had a baby blanket close by to catch most of it... as she was driving (not the best time, and no shoulders to pull off on). Once at daycare mom put Claire in her crib so the teacher could change her clothes as mom cleaned up the carseat. Claire was full of smiles as if nothing happened and really just wanted to talk and smile for her teacher. Later mom called the nurse at Claire's school to let her know about the seizure and how they sometimes are followed up with throwing up. whew.

October 6

Claire had a pretty good day. Mom filled her tummy up and she seemed just fine... handling her gingerly, so she wouldn't gag and lose her breakfast mom set her on her side after breakfast and went in the shower. Claire kept her food down even at her school and mom was so happy! At her school, they fed her at 11am, and at 12noon she brought it back up... so not much food at school. At home, mom fed her more, and she kept it down for a little while. She coughed and brought it back up again... twice... but still kept much of it down.
Mom and dad went on a date. It was a great evening, they really just had time for dinner out and had a gift certificate which made it more fun, cause then you feel like you can order ANY thing on the menu.
When they got home, Claire was still up and the sitter was playing with her a bit. Mom gave Claire meds and more food and got her to bed soon afterwards.

October 5

Claire slept well and mom got her up for a nice big breakfast. She did pretty well and kept it down fine for a while. Dad took over after a bit as mom had a meeting. Mom waited patiently for dad to get home and just as mom was running late, and dad hadn't arrived home yet, Claire threw up all over the comforter on Mom and Dad's bed. She was laying on a towel, but seemed to completely miss the towel... the little stinker.
Mom and Dad tagged off as dad apologized for running late and mom apologies for the present Claire left on the bed. whew.
Dad brought Claire to PT to meet up with mom and see the new stander. Sadly, the stander-guy cancelled, so dad left and Claire had an okay day at PT, not really wanting to do much that impressed mom, but still doing well at what she's learned so far... like standing next to the ball and doing some situps on the ball.
At OT, she was learning to sit up. Claire does pretty well sitting and catching herself front to back, but not so much side to side... if she lists to the side, she tends to go over, but she will do sit ups if you let her (about 45 degree angle) from front to back... pretty neat to watch! Probably oughta get that on video!
After OT ended at 2pm, mom had to rush off with Claire to get the kids for the dentist appts at 2:30. Mom took Claire along and the dentist said her teeth were definitely crowded but not something that mom should worry about yet, as long as she can get in and clean them well, and she seems to be able to.
After the dentist it was home to make dinner and another meeting with a landscaper as the family needs a driveway, not the gravel/dirt road they now have. It's a wonder mom has any alignment in her car... does she?
Once that guy was gone, and dad was home with pizza, everyone ate and was off to bed... mom was in bed before 7pm... she was exhausted from her day, and Claire had a nice big dinner and went to bed too. Mom and Claire were up a little later in the night for Claire's meds and more food. Slow and steady wins the race.

October 4

Claire slept through the night. Mom too.
In the morning, mom fixed her about 6oz of thin shake and 3oz of pedialyte. After meds, she drank all the pedialyte and went into the shake until she got bored with it. Then off to school.

October 3

Claire slept through the night. Mom heard her talking for some of the night. Lately, Claire has been making some fussing noises (her trying to roll from tummy to back) and then some talking noises (after rolling over, time for playing) around 4am. Mom just lets her talk... she isn't fussing, just talking, maybe in Japanese.
Claire went to daycare, but not after couging up a bunch of phlem this morning... at least it is all loose, her cough is very loose, just wish she could keep the food down in the process. Mom got some good fluids in her this morning, and about 4oz of shake (which came up after one of her coughs). Poor dear.
Mom dropped her off with plenty of food, cereal and diapers... even a bottle of pedialyte so they can give her that instead of water.
Late in the day, just after they put Claire in afterschool care, they noticed blood on her cribsheets as she was napping. Not knowing what it was, mom got a call. Mom figured worst case, it was that esophagus thing that mom fears the worse (when Claire threw up the hershey syrup looking stuff last week and the dr suggested that it was something that could cause internal bleeding) and best case, it was a tooth cutting gums... as was happening often... a peice of gum remained across her molars for several days be completely cutting across her tooth, and caused random bleeding. The nurses watched her a little more closely and called back to say it looked like she cut the inside of her cheek... whew. They said she looked good, good color, good eating, etc.
At home, dad bought her a new carseat as the one she uses was getting a little rickety... it had been around for about 7 years or so. Claire is probably too long for the seat, but according to the basic guidelines of her head not being within 1 1/2" from the top, she fits fine. It is the best solution for now anyway. Claire drank 5oz of pedialyte tonight and then about 4oz of food before bedtime.

October 1

Claire had a good time at church. Her daddy held her much of the time and fed her. Big brother held her as much as he could so he wouldn't have to kneel, stand, etc. Big sister was pretty well behaved, still has a few things to work on, like not sneaking in toys to chuch. Even a necklace can keep her preoccupied for most of church and is quite a distraction to everyone else... esp when mom tries to take it away and lays on the threats. Overall, an uneventful mass -- thank goodness.
Mom spent much of the day trying to pick up around the house. In the evening, everyone went to Claire's uncle's home. Big sis went swimming, her reward for a clean room and lots of stamps at school for good behavior. Big brother played catch with his dad and uncle for a while. Mom was inside feeding and cuddling Claire Baire, and working on dinner.

October 2

Claire slept through the night. Mom woke up with a nasty headache. Dad brought her some decongestants and it helped somewhat. Big football gameday today so mom needs to get into shape and get her gameface on. Sitter came just after 12:30pm and big brother brough a couple friends to the game too. Big fun was had by all, and even at a 3:30pm game, sunscreen would have been smart to use. Who knew. It was a bit hotter than anyone expected, but everyone stayed well hydrated.
In the evening, friends came over for pizza and everyone got caught up and reacquainted. It was a nice evening. Claire ate well and went right to sleep after her meds. She's still on the antibiotic she started last Sunday.

September 30

Claire slept through the night. Mom checked on her this morning and she was awake and cooing. Mom picked her up and gave her meds, then fed her about 3oz of water. After the water, mom fed her about 4oz of food and Claire was a happy baby. Just before leaving for work, mom gave Claire her antib's, but Claire gagged on them (they are so awfully sickening sweet and thick) and threw up much of her breakfast. Mom was a bit frustrated and dad helped get Claire cleaned up and they were out the door. Claire fell asleep on the way to daycare, a little power nap and once she was there she was awake. At daycare, mom put her in her crib and she played for a bit as mom left for work.

September 29

Claire had a pretty good day. Dad changed her this morning and noticed her diaper was pretty dry. After school Claire's teacher said she had dry diapers most of the day, so mom is very concerned. Once home, mom fed Claire some cereal, then made her a mixture of pedialyte and yogurt with a little duocal mixed in.. She drank a few oz and then fought with mom over drinking more... her little lips pursed together as if to say she'd had enough and she was very tired too, so mom put her to bed. Mom will work ont he fluids in the morning, when Claire is more hungry.

September 28

Claire slept through most of the night. She's still got a very loose cough but seems to be keeping her food down relatively well. She went to PT today (OT was cancelled) and her therapist had a stander there for her to try out. She did great! Mom and the therapist were both very excited and the stander-guy seemed a little amazed at what Claire could do too! The stander they tried wasn't the one she will be getting (fingers crossed that it is approved) but a bigger one. The one that the therapist wants for Claire is a smaller one with more 'straps' and stabilizers for her to keep her head and body lined up better. It is going to be great. Claire really wants to stand and has been practicing for this big day, and showed everyone that, with a little support, she can do this! Mom teased the therapist that she wanted Claire walking by the time she's three... at 3 years old, Claire will be going through a different process of getting funding and financial help, and without insurance covering her therapies, she will have to start seeing different therapists at that time, so mom is hoping for some big strides here in the next 5 months. (fingers crossed).

September 26

Claire slept pretty well last night, tho she had some coughing spells, very little spit up was noticed in her crib.
She's staying home with dad this morning while mom goes in to work for a bit. She drank 4oz this morning on her own so mom was pleased with that. Mom gave her meds and a neb treatment, dad will give her antib a little later.
Since mom has propped Claire so she can't roll onto her back (ya work so hard to teach her to roll, then ya don't let her -- mixed messages). Mom discovered once she rolled to her back, she would gag (likely on the saliva from her hands in her mouth, or just whatever was in her mouth) and then eventually cough and throwup. By propping her so she can only sleep on her side or tummy, mom noticed a decrease in coughing, gagging and throwing up. Claire seems glad for all that too as she was enjoying her bottle this morning.
Mom wants to keep Claire home one more day to get some good eating habits back and be sure the antib has a chance to kick-in before exposing her to the daycare again.

September 25

Claire wasn't too big on eating today, she did sleep pretty well through the night as mom put a blanket on one side of her so she couldn't roll onto her back... to see if that would help keep her from coughing. Sure enough Claire was up only once coughing -- around midnight. Mom was a little froggy today as she got some good sleep... and some good coffee this morning! Dad took the kids to church and came home with donuts and lunch... he wasn't planning on going out again soon, and the stove and oven are still out of commission... waiting on those darn elusive new cabinets!
Claire's aunt called and offered to take the older kids for a bit and off they went for a few hours. It was a nice break for mom as she got some work done and much cuddle time with Claire after Claire's long bath and a fever of 102.8. and more motrin. Claire had a nice evening, sleeping much of it away in her kimba until mom decided to feed her s'more food and ticked the little Peanut off. Such is life. She doesn't want food and purses her lips up very tight and teeth together... who says this baby isn't strong... if mom gets the food in, Claire has recently opted not to swallow it, and sometimes it is blown back out -- Claire discovered making bubbles with her food is fun... so the war wages between mom and Claire to see if the food will go in or who will be wearing it.
In the evening, mom cranked up the O2 in Claire's room and the humidifier. She also gave her a second nebulizer treatment for the day. Claire seemed to be exhausted from the battles of the day and opted to go to sleep with little effort around midnight. She also had about 3 1/2 oz of formula/ped/olive oil/duocal this evening before bed.

September 24

Claire was up much of the night again. Mom was up with her. She had a fever this morning of 101.8 in the morning, so mom gave her some motrin. She lounged around much of the day, not feeling too great and not big on wanting to play.

September 22

Claire was up around 2am... mom went in to get her to drink more pedialyte, about an oz every 1/2 hour or so. In the morning, mom noticed the 4oz bottle was finished... not realizing that the last time she was feeding Claire, there was probably no pedialyte in the bottle. Mom was tired and the room was dark, so ya gotta give her a little break there.
Claire thew up again this morning... drank 2 oz of pedialyte, threw up 2oz of pedialyte. Mom let her rest a little before starting on another oz. Mom called the drs office so she could see what the dr thought that stuff was last night that Claire was coughing up.
Mom kept Claire home all day, and dad took over late in the day as mom had a meeting.
At her appt - dad took Claire, the dr said that it was maybe blood, and maybe not. Giving dad a prescriptions to have if Claire needed an antibiotic, and also giving dad an order for lab work next time they need anti-seizure levels taken, mom can just go get them. Yeah!

September 21

Mom got the results back this morning and Claires med levels are normal. What now?
The dr recommended going to a nuerologist, and mom agreed it would be a good idea. During the day, mom didn't notice any seizures -- yeah.
Claire was warm off and on during the day, she even had a temp this morning of 100.8 - around 4:30am.
Mom took her to PT and OT today and she had another banner day. Mom forgot the splints.
At PT she proped her head up nicely with her arms (laying on her tummy) on a ball, and eventually stood up against the ball - feet on the ground and using them for balance. Mom and PT were both very impressed with how hard she worked. They also agreed that she was ready for a stander, but the darn stander guy hasn't been heard from.
In OT, she worked on another cookie. She eventually ate the whole thing and did so well with chewing and swallowing with the OT monitoring her very closely and being sure to give her only tiny bites at a time.
In the evening, Claire started coughing. At first she just coughed and then she gagged... some orange food came up... not too sure what that was, but eventually it turned nearly black. Mom was very upset, it was late at night and dad hadn't gotten home yet with Claire's brother from his game. Mom called the dr's after hours line, eventually got a call back from the nurse, not much help, then called the urgent patient care and eventually got a call back from that nurse, then got another call after she consulted with the dr. They said since she had congestion and no fever, to just keep an eye on her tonight and go to the ER if mom was really concerned. Mom felt that since they weren't too upset hearing that her throwup was the color of a brown crayon, that she would just keep an eye on Claire and go to ER if it was needed. yesh. They said she should definitely be evaluated in the morning. brilliant.

September 20

Mom though Claire felt hot when she dropped her off at daycare and the nurse came over to take her temp. Mom loves that there is a nurse always so close by. Her temp was relatively normal, so mom decided to go to work. Claire had about 3 seizures while at her school. Mom called the dr's office to get a level taken and picked up Claire late in the afternoon -- took a while to get the call back, and it gets mom a little frustrated when it comes to Claire's seizures. May not get the results back tonight, tho it is 'stat'. Mom will wait it out.
Claire had a little bit of a rough evening. She screamed a few times in the evening, making mom think the screams were as she was coming out of the seizures. Just before bed, mom gave Claire another bit of meds to help curb them and hope Claire wont' have them again and sleep well. She may just be getting sick, and that could be why those awful things are rearing their ugly heads.

September 19

Claire had a good day at PT today.
Mom brought in the splints that the woman at her school made for her (bubble wrap and fabric -- and lots of velcro) and the PT had a ball with them, she put them on Claire's elbows (the were originally made so Claire couldn't put her hand in her mouth, and mom uses them only for feeding Claire), and Claire was able to prop herself up in a sitting position... and sat for a while with help only at her hips from the PT.
At Claire's school today, she ate a lot! Mom fed her 4oz of formula/pedialyte on the way to school, and at school she had a bunch of food. By the end of the day, mom counted about 30oz of food. And she looks it!

September 18

Dad was really under the weather today, so mom and Claire's big sister went to church. Her brother had gone to the beach overnight with friends... Claire had a good day... dad did not, feeling yucky all day.

September 16

Claire is having a great week. She slept through the night and awake very hungry in the morning.
Mom got some formula ready and off to daycare where she got breakfast. Those ladies are terrific at her daycare and mom is very happy that Claire goes to such a terrific school!

September 15

Claire had a nice day at daycare after sleeping through the night.
When mom picked her up, she had just gotten out of the pool with her teacher. Claire is learning to love going in the pool. In the evening she ate and ate and eventually fell asleep in mom's arms, so mom woke her for meds a little early and tucked her in.

September 14

Claire had a banner day today!
She went to her OT, who was already doing a great job helping Claire learn to drink from a cup (applejuice the consistency of nectar) and mom asked the OT if she could see how Claire would do with a cheerio. When mom feeds Claire, she often bites down on the spoon, or does chewing motions (even grinding her teeth) like she wants some steak (which she won't be getting). The therapist thought she could try Claire out with a cookie by Gerber that melts in her mouth after its been in there a while, and they did. She put in into the side of Claire's mouth and Claire bit down and chewed... the OT was veyr impressed. Claire kept chewing until it was dissolved and mom was so proud that Claire had the capacity to handle the solid food. Claire's OT also put the cookie to Claire's mouth and she bit off a piece and chewed. She followed that up with a drink from a cup of the thickened apple juice... a real Banner day!!

September 12

Claire slept well last night but fussed a little during the night. She was able to get herself back to sleep. Around 4am, she was talking and mom had left her sock on her hand (with rattle) and she was playing. In the monitor mom could hear the talking and rattling, so mom had to be the bad guy and shut the party down. Took off the rattle/ sock from her hand, turned off the ceiling fan - it was a bit cool, and made sure the blanket was over her. She went back to sleep shortly afterwards, and so did mom.
Mom woke Claire for meds and she went back to sleep shortly after mom changed her and got her in her carseat for school. Mom let her sleep, but in the car, the air must have been too cool, cause Claire was wide awake and looking for food. When they got to school, mom sat with her and fed her, then the class was headed off to the sensory room (a very cool room with lots to do, especially for Claire). Mom handed her to one of the teachers and left for work. She seems to be doing excellent, both at school and physically. Mom is still working on her standing and she loves it.

September 11
30 months

Claire slept well last night. She was up fairly early, so mom got up with her... they hung out for a while before it was time to get ready for church. Claire did well during mass, eating mostly, and not really wanting to go to sleep. She was full of smiles, along with a mouth full of food, she's a riot!
After mass, Claire fell asleep in her kimba chair, and mom left dad in charge and went to take a nap. When mom woke up, Claire got her afternoon meds and lunch, then they packed up to go off to Claire's uncle's house for swim and dinner, stopping to pick up some pie and chicken... yum! It was a nice relaxing evening. Mom likes to visit there since it means walking around and not tripping over stuff everywhere (kitchen still being worked on -- or, still needing to be worked on - no one ever said work on the house would comin in on schedule and on budget).
After a visit with Claire's aunt and uncle, and Claire eating most of the time they visited, the kids got home and went to bed. Mom too. Dad was up late working.
Today, we remember 9-11-01 and the horrible tragedy that happened 4 years ago as we watch more sad events from New Orleans in the aftermath of hurricane Katrina continually unfold. The city seems like they are starting to get things back together. Everyone cheered on the New Orleans Saints yesterday as they broke a tie to with the game... the football team without a city.