Claire's Journal -- 35th Month
February 9

Claire slept great. The kids gathered in mom and dads room as it was big brother's birthday. Claire slept through it, mom thought she needed the rest. Everyone was off to school this morning with a busy day planned including meeting with sis's teacher and RSV shots -- for Claire.

  Sittin pretty like a big grrl!What the heck is that up there... never seen that before... what the..??!
February 8

Claire slept great. Mom fed her in small amounts and Claire kept it down, watched a little tv, ate a little more. Kept her meds down and had a pretty good morning. Mom put her back to bed shortly afer her last bite. Claire took a nap to get ready for PT and OT later today. Mom got back to working.
Claire threw up on the way to PT. Fortunately, it wasn't too much, mom had antibacterial wipes to clean up the seat and Claire had a longsleeved shirt on over her onsizie, so mom just had to take the shirt off as it was just on the sleeves. She did great in therapy and got some new equipment borrowed from Children's Home Society. Claire did really well on it and her family coordinator not only brought the equipment, but also brought her camera, so mom has some great pix of Claire and Claire using the equipment.
In the evening, Claire went to dinner with the family to a mini-sports banquet for her big brother's basketball team. She did great and gagged once when mom noticed she was sweaty, she fanned her with a menu and Claire quickly gained her cool. Claire got home and drank 3-4 oz of her bottle and had her meds and went right to sleep. It was hard putting her to bed, she was full of smiles and fun, but mom needed the extra time for some cleaning and winding down.

    What the heck is that thing doing??!ok ok that's enough pictures mom!!
February 7
16lbs 11oz

Claire slept well, but woke up gagging. Mom rushed in and tried to divert her attention, and she stopped. Mom covered her back up and they both went back to sleep. Claire had a pretty good day. She was up and ate well, but threw up just as dad was getting back from dropping off the kids to get Claire for her dr appt. Mom cleaned her up, gave her a bath and packed up what was left of her breakfast in case she was really hungry at the drs office. Dad told the dr about her recent throwing up, he said to keep an eye on her and don't feed her right after she throws up (but that's when she's really hungry :o/ ). Claire weighed in at 16lbs 11oz. Mom picked Claire up from daycare, as she had just thrown up and the teachers had her stripped down. Mom borrowed a shirt and took her back to her classroom to dress her and get her home. Mom decided to stop temporarily with the duocal and see if that helps. Her teacher thought she just had flem, or maybe started to aspirate but caught herself and just threw up instead, as that may be the only way she knows to get rid of it. Whew. Mom got her home, fed her a big dinner, she threw up half. Mom decided to just feed her 2-3 oz at a time and let her body digest it, see if she's just getting too much food. She's been eating great and keeping at least half her food down. Mom is also going to try to get to her rest after she eats... not that Claire gets up and dances after eating, but mom is thinking putting her to bed, even if she just lays there and doesn't sleep. As long as she's on her side, it seems like it would help her get it all up if she does gag. In the evening, Claire kept the rest of her food down, esp after mom put a sock on her 'free' hand, maybe she's gagging herself and no one sees it? Claire kept her meds down(yeah!) and went right to sleep when she got into her bed.

February 2

Claire was up randomly. At one point, mom opened her door a little more to let more warm air in. The furnace is right outside her door, so mom tends to leave Claire's door only cracked a bit, esp with her latest heat rash. Within an hour later, around 2am, Claire seemed hungry (from what mom could hear in the monitor) and started crying, so mom fixed her about 4oz and Claire was fed and back in bed in about 30 minutes, and not another peep out of her. Maybe a growth spurt?

February 1

Claire slept pretty well. She was up for a bottle and meds, then back to bed, so mom is wondering just how well she did sleep. She woke up before PT fussing and mom fed her up until the last possible second, she finished about 8-9oz of cereal and out they went. She only had a 30 min session with PT, but she got some good stretches in and mom got more ideas of what to use Claire's new bench for (PT is ordering for her). It will be great for her to sit on, her feet touch the ground, and mom can pick her up by the trunk and help her go from stand to sit. In OT, the therapist actually got Claire to take her hand out of her mouth and bat at some beads... she played with them for a good long while. Mom was so tickled.. it takes a lot to get Claire to take her hands out of her mouth. They discussed using signs (sign language) and which ones she should learn next as she seems to have the 'put hand on mouth' sign down pat for eating more. At least, that is what mom and the daycare folks think, and when she does that, she usually gets food, so it reinforces it. Mom wants Claire to learn to put her arms up when she wants to be held, or get out of her chair. Mom wants to communicate with Claire, and knows it is one thing to learn sign language, but a whole new thing to be able to teach it to someone else, esp someone who has limitations. Mom will be seeking help on all that soon.

January 31

Claire had her ortho appt today with the local dr. He specializes in spines and expecially scoliosis and children. He saw Claire on a special appt that her dr helped set up to see if she would need a brace. They took xrays and her spine obviously curves. Front to back is about 45% and side to side is close to 23%. Mom can't remember the exact numbers, but those are close. The dr said that a brace would only inhibit her breathing and likely add to the frequency of pnuem's, so he recommended lots of exercising to stretch her back and get her muscles stronger. Mom has concerns about her 'hunching over' when she sits, and he said it was good for her to sit, and she will hunch over, but with other exercises to stretch her back out frequently, it shouldn't get any worse. Dad mentioned the PT was concerned with her hips and shoulders. Hip sockets are shallow, but she should still be able to learn to stand and work on walking, so really no restrictions on anything she is trying to learn. Mom was pleased with that.
Mom held Claire on her lap, planted her feet and lifted her up by the trunk and Claire pushed up to near-stand (maybe a few degrees shy of a straight up stand, but definitely holding her weight, mom just guided her) for the doc. Mom wanted him to see that she wants to bear weight. Mom was so proud she stood on que.

January 30

Claire a great night and mom even got up once to turn the monitor up louder since Claire wasn't even snoring. Mom woke her up early for a diaper change and to get her ready for school. Dad took over and changed her and gave her meds while mom finished getting ready for work and off they went. Claire drank about 3+oz of formula this morning, mom added bananas and pedialyte for flavor and duocal for more calories... always trying to fatten that baby up!! Dad took Claire to PT today. No word on the xrays from Friday.

January 29

Claire slept through the night - yeah!
She was up early for breakfast and slept through all of mass this morning. In the afternoon, mom put her on a blanket on the floor to help straighten her back, and eventually she decided she didn't like that position and moved all around, almost off the blanket. She's getting more and more mobile. Mom likes to see that. Claire's older sister helped her mom make igloo cakes and penguins (from oreos) for sis's class, they are studying Antarctica and the Arctic.
The boys went to a basketball game and the girls hung out.
Claire drank a bottle before bed and snuggled with mom later in the evening before going to bed and straight to sleep. Yeah!

January 28

Claire enjoyed her morning as mom let her sleep in only to get to play with two of her afterschool teachers when she got up. They came over to watch the kids while mom and dad went to an event on campus for mom's work. It was fun and nice to spend some time together. Mom arrived home and the kids had had a ball with their new 'college friends'. Claire's big brother even found out that they know one of his all-time favorite college players, so he was excited at the possibility of getting an autograph!
In the evening, everyone relaxed and mom made a couple cakes to decorate tomorrow as igloos.

January 27  

Claire gets xrays today to see how her lungs are doing (fingers crossed!).

January 25

Claire had a much better night, hardly making a peep.
Mom woke her in the morning... she was half awake, but eyes shut. Full of smiles. Mom took her from her bed and put her in the carseat on the counter for her meds and breakfast. Still full of smiles. Mom got out the camera, but most of the pix seem to be blurry... oh well, there are plenty more smiles where that came from. Claire ate a bunch and napped a bit. She was coughing a lot this morning, and eventually threw up some, which included flem. Still kept most of it down, so mom wasn't too disappointed.
Dad was watching her as he worked on his laptop in the kitchen, and mom got some work done in the study.
Later, Claire got a nice bath and a hair cut (see before and after pix below)and then mom made a bottle for the road. They went to OT where Claire got a bit of a workout on her weight bearing on her arms... Claire doesn't particularly like that, so she wasn't pleased, but worked hard all the same. Then came PT, and she got a really good workout. Arms, rolling, sit ups, standing... you name it, she was exhausted when it was all over... and hungry. Mom got her home in time for afternoon meds and lunch, then put her in her crib for a nap. Mom went back to work.

January 24

Claire was tossing and turning much of the night, as mom was awake listening for her. She was in her own bed, so she's certainly got more room to toss and turn. Around 4am, mom went in and covered her a bit, thinking she just couldn't sleep because she was cool, and they both got some sleep after that.
Claire was up in the morning and after a bit of food, she was off to school and mom off to work.
Mom got a call late in the day that Claire hadn't eaten anything all day, tho she has been full of smiles and seems well. Mom will pick her up a little early and get food in her asap, so she can get another good feeding in before nighttime. Big brother has a game, so he's going to that with dad after school. The family will regroup later tonight.

January 23
15lbs 13oz

Claire decided that kicking her daddy is a new past time at night. She also decided to sharpen her nails on his back as well. Poor daddy. Multiple times, as in the past few nights, mom and dad were awakened frequently to Claire's shenanigans.
Mom got an appt in the morning for Claire to see her ped now that he's back in town. He thought she was doing better, and said she could go to school tomorrow... mom appreciated that. It was determined that she'd lost about a pound, and that saddened mom, but she actually thought it would be more the way she went days (it seemed) getting little or no nutrition because she was throwing up so much. That's in the past, now it is time to fatten that little girl back up. Mom feels she has the tools and the know-how, just got her work cut out for her. Fingers crossed that she can gain before she gets sick again. Overall, she looks good tho. Claire went to PT afterwards with dad and got her new stander... a banner day for the sweet pea.
Mom went on to work and found a few surprises waiting there, including a new 'boss'. Things will likely work out fine tho (again with the finger crossing).
In the evening, big brother had baseball practice and big sister had her testing for her white belt in karate... her first belt and mom and dad are so tickled. Claire ate by spoon in the evening, the first time she's taken it in a few days, tho mom has offered it on several occasions.

January 22

Claire didn't appear to have any temp during the night, at one point she woke up, but was very sweaty... mom is praying that it is a good sign. No dry heaves and no throwing up either - yeah! (fingers crossed this continues). The throwing up tended to happen when she was in the middle of a fever, esp if mom was feeding her. Mom learned pretty slowly that she shouldn't feed Claire if she had, or was getting (had a low grade) fever... otherwise, it would all come back up.
She was up at 7am, and seemed hungry and fussy... mom fixed a bottle (5oz of pedialyte with bananas and a little duocal) and mom squirted it into her mouth, and she drank it all in about 20 minutes, after her morning med. She doesn't seem to want anything in her mouth, maybe the liquid is coming out too fast, or, more likely, she has a sore throat. Mom isn't sure which, but has seen this before, so she's just going to go along with it, as long as she is drinking and seems hungry, mom is going to keep squirting in the fluids.
Mom went to church with Claire's big sister, today is Her day... mom and big sis planned a day for her and spend the day together, including caring for Claire while dad and big brother go to mass, mom isn't comfortable with taking Claire to mass, and they still have her on oxygen. She has a really loud and loose cough and her lungs sound 'creaky', even without a steth'scope. If she isn't better soon, mom doesn't know what they will do next, as Claire is on her 'best' antibiotic... sigh.

January 21

Claire went in for another check up this morning. A follow up from yesterday, different doctor. She had a temp of 101.5 in the morning, and mom gave her tylenol in the waiting room. Since she had the temp, she got another shot of antibiotic, didn't cry at all, just fell back to sleep...amazing child!
Mom took her home and throughout the day gave her nebulizer treatments and chest percussions. Claire also got a dose of antibiotic and drank about 15oz of fluids today. Mom tried spoon feeding her, but Claire got mad, and so mom went back to the haberman. Claire would randomly decided to drink on her own, but often opting for mom to squirt it in (to the side cheek in small amounts) and Claire would just swallow. Mom is adding duocal, a high calorie high fat powder that was recommended to her by the hospital nutritionist when Claire was in the hospital last summer. Claire will sleep with her mom and dad again tonight, the 4th night (or so, mom's lost count). For as much as dad compains that Claire kicks him all night (she turns 90 degrees and taps him all night with her feed), mom is happier to be in bed with a little room than to be in a recliner at the hospital with 3 pillows under her for comfort... a word she uses lightly in regards to hospital sleeping.

January 20

Since the drs office was still insisting that Claire go to ER "if" she is really bad off, and mom not knowing what that meant, was in total confusion and wanted SOMEONE to see Claire before going to the hospital. If it wasn't so serious, and mom didn't know, she would just want an antibiotic and wait it all out with the usual chest percussions, nebulizer treatments to open the bronch, and as much food as the little peanut could keep down... with random decongestants.
Mom asked the drs office (dr still out until Monday) if there was another ped they could send them to, they said no... the only other alternative was to go to the 'urgent care' facility associated with their HMO. Mom agreed, at least it was something, and there is a place for xrays just down the hallway, bloodwork too, talk about one-stop shopping. The only reason mom would hesitate (and wasn't keen on the idea earlier) was that you don't know what dr you will get... and mom stereotypes drs about as much as drs stereotype trisomy babies... mom learned from the best.
They got a 1:30pm appt and was out of the house at 1pm to take Claire to see the school nurse, who knows Claire (listens to her daily when she's at school -- she's been out all week this week tho). The nurse was wonderful, listened to Claire and said she sounded a bit gunky (the technical term used frequently to describe Claire's lungs, even on a good day). Mom had some baseline now to go see the 'new' dr.
The visit turned out to be great... everything mom had hoped for, mainly because the dr didn't take one look at her and send them to ER. He did a chest xray which showed pnuem in her right lung... and lots of it. She got some motrin, as she had a fever that morning while visiting the dr, and a shot of an antibiotic, then a prescription for another antibiotic. whew.
After the appt, they went to get the antib that was called in, but it wasn't ready yet, and talk about long lines in the pharm... the duocal mom ordered was there, but mom opted to come back and get it all at once. Mom did pick up some more pedialyte the regular check out and they headed home.
In the evening, Claire slept a lot and ate pretty well before bed. She's good at downing 5oz at a time of pedialyte, and mom can put almost anything in it, bananas, formula, she just loves the stuff (good thing too!)
Mom is nervous, and glad she's on her antib of choice. Dad isn't nervous since it is only one lung that is compromised (he's seen her pull out of worse situations). Not very comforting for mom to hear. sigh.

January 19

Claire was tossing and turning much of the night... that meant mom and dad didn't get a lot of sleep either. Dad's been a real trooper through all this. Claire's temp went up to 101 during the night around 1:30am and she started coughing and gagging (like dry heaves) and mom gave her some motrin and some pedialyte. She probably drank 5 oz during the night and another 5oz with duocal by 3pm. Not a lot. Meanwhile, mom's been calling all over town to find more duocal and found out that Walgreens would order her one can at a time. She was so happy. It will be ready for pick up tomorrow at noon. Mom is going to start Claire on formula/pedialyte later today to get more calories in her. Finger crossed that the little peanut cooperates.
Claire's teacher called today to check up on her and mom had a good long talk with her and got some good ideas of what to do next, including getting some calories in the little sweet pea and waking her more frequently to do it. She said it would be okay for mom to bring Claire in to see the school nurse, but not such a good idea for her to go to the classroom (of course).

January 18

Just after 1am, Claire's temp spiked again to 102.5 and she threw up. Claire's been eating sporatically and mom's been squeezing the food in. It isn't that she's so lethargic, but rather that she just puts her lips together and fights mom... the little stinker. She had a pretty good day. Mom called the dr only to find out he was out of town for the week, and if they needed to, they'd need to see the nurse, or go to ER. The nurse at the dr's office hadn't really seen Claire, so mom thought about going to Claire's school and seeing the nurse there, who sees her everyday. She couldn't prescribe anything, but would certain have a thing or two to say (she always does -- and mom has NO problem with that). Mom loves the extra eyes and ears when it comes to Claire, and keeping her healthy. Mom had to cancel therapy today. Claire loves her therapy. :o\

January 17

Claire stayed home with daddy today until around noon and dad handed off the baton to mom. In th evening, Claire's tem went to 101.8 around 5:30pm, and then up to over 103 by 9pm, even after the earlier motrin. Claire had a pretty big seizure around that time. Mom was frantic, but gave Claire a little more motrin and her anti-seizure meds an hour early, then put Claire in the bath to try to bring her temp down asap. Poor dear. She didn't fuss as much as mom would expect, and mom tried to rationalize it was good for her lungs to cry, knowing there wasn't much else mom could do to get the temp down asap. Eventually it came down as mom held Claire after her tub, teeth chattering, and then she fell asleep.

January 16

Claire had a low grade temp around 7pm tonight, 100.7 under her arm, so mom gave her some motrin and put her to bed shortly after. She will likely need to stay home tomorrow from school.

January 12

Claire slept pretty well, tho mom is sure she was up often during the night. She seems to have become quite the little night owl, but not crying or fussing, just blowing (bubbles) and chit-chatting off an on during the night, and mom lets her have her fun.
Mom went to wake her this morning, but she was awake already, laying on her back, eyes wide open and one arm up in the air, as if waiting (quietly) for someone to come get her for breakfast and conversation.
Mom changed her diaper and gave her med, then gave her breakfast and Claire was so hungry she ate most of the 10 or so oz of cereal mom fixed for her. This morning, her cereal was rice cereal w/banana in already in it, formula, vitamins with flouride and a bit of olive oil... oh yeah, mom added a little powdered formula too, for a few more calories. Claire loved it all. Mom was very pleased. Mom has been feeding Claire in her carseat on the countertop lately, so she's up with everyone else and in between feedings (typically mom gives her a 5-10 minute break and tries feeding again) Claire is with mom as she does dishes or works on dinner. Hopefully, Claire will have a new 'straight-back, inclined' chaire soon and she can be in a better position for eating and hanging out on the counter with mom.
Dad put a dress on Claire and off she went with mom to daycare on a nice full tummy... about fell asleep on the way in.

January 11
34 months

Big day in Claire's home today. It's her daddy's birthday today. Claire's big brother woke mom up early and everyone got dressed quietly and woke daddy up to tell him they were all ready to leave and he had a few minutes to get ready as they were taking him out to breakfast before school. He was surprised alright, maybe because he was going out to breakfast for his birthday, but probably more likely that everyone was dressed and ready by 7am! It helps that the kids didn't eat breakfast, that is typically the bottleneck at Claire's home in the morning. Dad got a nice present for his birthday and out the door they went.
Claire had PT today, and her therapist was having a lousy day, but said that her time with Claire really brightened her day. Claire had a great session and even wanted to go from sitting to standing... so they worked on it, and when the therapist thought Claire had enough, Claire tried to push up once more on her legs. Mom told her she really wants to run with the 'big dogs'... and she's just stubborn enough to do it one day. Mom is very hopeful that Claire will walk one day, if even just with a walker. She needs to work more on sign language with Claire. It has always been a dream of mom to see Claire walk and talk, even if she walked with a walker, and spoke only in sign language... Claire is mom's little project and they have very high goals.
Her therapist was very pleased with Claire's progress and even suggested asking for a little bench for Claire to have at home. It is just tall enough for her to sit on and have her feet on the ground so she can practice going from sitting to standing. Along with that, mom wants to see if Claire can get a chair to sit in that has a flat back to help with Claire's scoliosis, yet it is fairly well upright enough so mom could feed her in that chair too.
After PT, Claire and mom picked up the kids from school and they went to get a cake mix for Dad's birthday cake. Claire's big brother wanted angelfood and mom agreed, so they also got strawberries, whipped cream and vanilla ice cream... yum! They ordered Italian food delivered, as dad didn't really want to go out and wanted to work on some things around the home and throw the football with Claire's big brother while her big sis did her homework and mom baked and cut up strawberries... after dinner, family came over for cake and celebrated dad's birthday. A fun night. Claire got her meds very late, with all the commotion, mom realized it and gave her a late dose, then another half dose before bedtime. The thing with Claire's anti-seizure meds is that missing one dose could cause her to have seizures, so mom freaks when she misses one, and even set the alarm to get up at midnight to give her another dose, but later realized that she could maybe just give her a half dose before bed and have her back on schedule in the morning, too much meds will make Claire sleepy, and that may compromise her eating. It is all so confusing.