Claire's Journal -- 29th Month
August 10

Claire's been looking like she's improving well. Still taking her antibiotics and the other med to fight yeast infections. Eating well, tho not back to her original chubbiness, still looking fine.
Claire had OT today, she has PT tomorrow. This month was a disaster when getting appts for therapy since she was going from healthplan to children's home society... they wouldn't let mom get appts until very late in the month, so she took what was left... and there were not 'comment cards' in the waiting room at the time, imagine that.
She did well at OT, tho the therapist tried beef and noodles, and told Claire it would taste just like raviolies -- Claire thought, 'what the heck is ravioli?'.... and wasn't too pleased with the taste since there was no hint of bananas... she's spoiled... mom even puts banana rice cereal in her chicken/apples baby food... and she loves it!

August 7

Claire's still coughing and did so most of the night, only now she follows up her coughing with a sneeze, instead of a gag and spew.
Mom went in her room this morning and the peanut was awake, just hanging out, so mom gave her her chest percussion therapy, fixed her meds and her banana/berry mush. She ate a lot, and they played for a bit, then cuddled and Claire went back to sleep.
Mom can't really tell if her pneum is better or worse, but Claire seems comfortable and mom even gets a smile every now and then. She is also sleeping well, so maybe she is on the mend.

August 5

Claire was randomly fussing throughout the night, starting around 1:30am, just as dad was going to bed, so mom was up with her trying to figure her out. Claire drank about 2oz off and on, but when she drank, she really meant it (good sucks on the bottle and swallows too, no dripping). Often she would turn her head to see if mom was still there, so mom eventually faced Claire towards her so she would drink and be able to see mom. When she seemed full (pushing the bottle away) mom would lay her back down, leave, get into bed, and hear her fussing again. Then mom gave her mylacon, in case she had gas, and nose spray (with decongestant) and tried to clean out her nose, but it didn't seem too congested, so it was probably in her head. Mom turned on Claire's humidifier hoping that would loosen something up stuff in her head and did some chest percussions on her to see if that could loosen something up stuff in her chest.
Mom went to bed and after about 2 minutes, Claire let out a cry, then nothing. Then another 2 mintues, cry, then nothing. Mom didn't know what to do, but noticed the cries were farther and farther apart and wondered if she was just lonely, since she seemed to be fine when mom was in there. Mom knew she would need rest as she was planning on getting to work really early in the morning, so she layed there until Claire stopped fussing, which didn't seem to be too long. Little peanut, she's spoiled, but mom is proud of that... and often pays the price... this time, with her sleep. A labor of love.
In the morning, dad was in charge of Claire after helping mom get the kids out the door and off to summer camp. She was getting her usual med, plus and antibiotic and spoon feeding. Fingers crossed he does well, her first meal of the day (er, in this case her second) is the most important and really steers how the rest of the day goes for her.

August 4
15lbs 12oz

Claire had a pretty good night, and was up crying around 4am. Mom knew she was hungry and definitely wanted to take advantage of that, so she fixed her a bottle. Claire drank just over 2 oz, but didn't finish before the xray techs showed up. Mom teased them that they were coming earlier and earlier every morning. They were amused.
Claire finished her early morning snack and went back to sleep, and mom tried to also, falling in and out of sleep, as Claire was probably doing too.
The nurse came in in the morning (she works closely with the dr) and she told mom that they were going to take Claire off IV this morning as she seems to be eating well. Claire had just finished 4oz of mush (spoon fed), and mom agreed it was a good time for that.
The nurse asked what mom thought and mom said, 'we can go home today?' and she didn't see why not.
Claire was off IV and off O2 so there wasn't much the hospital was providing except for antibiotics/meds and chest percussions and those were things that Claire could have at home, so it was settled.
The dr came in shortly afterwards and said the xrays showed that Claire's left lung showed the pnuem still there, but the alectasis was gone from the left lung. The right lung still had both alectasis and pnuem in it, but seemed to be looking a little better.
The nutritionist came by with instructions and high carb powder for Claire to try at home.
The priest from the family's church came by again in the morning and spent time talking with mom. It was a nice visit with mom doing a lot of talking - as usual - he was a good listener. He annointed Claire and soon had to leave to prepare for a wedding.
Mom finished packing everything up, dad was in class all day, so mom received help from the nurses and loaded up the car and she and Claire were outa-there!
Mom stopped by the pharm to drop off the prescriptions. Claire is on one antibiotic and one med for curbing yeast infections - given all the antib's and her rash flared up on her face. Once home, mom and Claire both fell asleep, nothing unpacked, and the phone came off the hook for much needed rest.
Dad picked up the kids and picked up the prescriptions. Friends he works with make some casseroles for the family -- it is so incredibly thoughtful and will allow mom more time for the chest percussions and feedings.
When Claire woke up, she sucked down about 6oz of shake. Mom had added a little powdered formula to the shakes to add some calories, but not too much, more like just a sprinkle, for starters to see how she tolerates the concentration. Claire also got her olive oil mixed in, which she hasn't had in days. Yum, olive oil in banana shakes... heheheeh!
Claire had a good evening, mom gave her pedialyte so she wouldn't get dehydrated and she drank about 4 1/2 oz of that, then mom put her to bed as she was looking very tired. She went right to sleep. Mom was in bed shortly afterwards, close to 11pm.

August 3

Claire was up and down throughout the night as is typical in the hospital. Mom too.
The nurse in the middle of the night likes to talk to Claire so mom heard the two of them chatting back and forth. The xray guy was back... this time at 4:30am, guess he wanted to get an early start.
Mom was up and moving about close to 7:30am. Got a cup of coffee, washed her face and got some food ready for Claire, then settled in... tho only briefly, as the xray techs came in with the big xray maching and needed to retake the image. Evidently, the ped card looked over the xrays and determined that they weren't done well enough to read, so he asked them to retake them. Claire had only had about an oz by then, and mom handed her over. Once they'd left, mom was settled in again, another oz for Claire and they showed up again... yep, more xrays, something went wrong with the second photo shoot, so they were back, and interupted Claire's breakfast once more. Dad showed up shortly afterwards and eventually mom was back to feeding Claire. By 11am, she finished 4oz of shake.
Claire's dr came in and spoke with mom and dad and mentioned that her right lung is about 40% compromised.. the good news is that it isn't more than before, so she's stabilized there, the bad news is they've noticed some - little bit - in the left lung. Dr didn't seem to think it was too alarming to find and called some of what she has alectasis. That's when the tiny air pockets in the lungs start to collapse. It is just what she had last Easter, but no sign fluid in the lungs. No one is really sure that the pockets ever fully inflated from last year, as there were no chest xrays done since. Again, he was positive and hopeful with the antib's and the chest percussions that she could be well enough soon to go home. yeah!
The nutritionist came by and agreed the Pediasure is too sweet and pretty much for older kids, so she thought mom should just add more powdered Isomil to the premade Isomil for additional calores, from 20 cal per oz up to 22 or 24 cal per oz, so each oz will be more meaningful. Mom was hesitant as she just wanted to get Claire on her regular schedule, not really working towards more calories, except through more food, but the nutritionist said that since she is already drinking the isomil formula, Claire wouldn't notice and would be able to tolerate it just fine. One of the priests from Claire's church came by too, it was a nice visit.
Mom put Claire down for a nap and thought they'd work on feeding again around 2 or 3pm. Dad came by at 1:30 and relieved mom so she could go home and shower... she was getting a little "ripe" as she hadn't bathed since Monday (ok ok, too much information)... but the bath was nice... ahhhhh.
Mom came back with a late lunch in hand. Dad had fed Claire while mom was gone and she drank 4oz! Mom wasn't gone much over an hour, so that was pretty cool! Dad's the best! Mom invited him to come back for the next feeding, but he opted out as he was getting the kids from camp, and making an early night of it. Since they wouldn't be coming back to the hospital to visit, dad wouldn't be able to take the next feeding. ... too bad for him.
Around 4:45pm, she was taken off O2, but mom noticed the levels aren't at 98-100, so is wondering if she will be put back on just to help her out a bit.
Mom and dad noticed a few seizures today, one esp just before her meds were due at 2pm, on Dad's shift, he said it was very noticeable.
A friend of Dad's came over tonight to visit. It was unexpected and pleasant. He had mom in stitches as he doesn't like it when Claire throws up or needs her nose suctioned. Usually, when he visits the house, Claire throws up (even if she hadn't in weeks) just for him, and usually once she does that, he needs to leave... so it was impressive that he came to the hospital at all... and mom enjoyed the company. He sat with Claire for a few minutes while mom went to the cafeteria to get some dinner... and dessert. The respiratory guy came by to give Claire some chest compressions and suctioned her nose, which led dad's friend to leave the room momentarily.
Claire was in bed by 10:30, mom in bed by 11pm.

August 2

Claire up and down much of the night, including nebulizer treatments every 4 hours and xrays at 5am. The tech came in, woke more and put a lead 'blanket' on her and she went back to sleep until she heard Claire fussing, a means to an end. Since the peanut was so wide awake, mom determined it would be a good time to feed her, she drank 3oz and they both went back to sleep (a relative term in the hospital) as staff was in and out of the room constantly, until the dr came in. That was closer to 8:45am. Close to 7am, mom called dad to tell him about the room change, but didn't mention the new room, meanwhile mom's sisters were trying to call the old room with no luck, until one got froggy and got the correct room number... and she was tickled! Mom didn't answer the phone at first, since it made a slight ticking sound. The ringer had been turned down, so mom just thought it was one of the machines in Claire's room. Mom had a friend visiting, who showed mom how to turn up the ringer on the 'older' model phone. Later, mom's sister even sent an email with an update to mom's family and gave the right phone number, mom asked her to copy dad on that email. :o)
The dr's visit was brief, he said she was breathing pretty well, tho she had a big pnuem 'mass' in the center of the right lung. It would be 2-3 weeks before it would heal completely. Mom mentioned Claire had started a new daycare, and he said 'ah ha'... and mentioned she would likely be starting a different new daycare in two weeks. He never really said that would be problem but agreed this would be the time of year to expose her, and expect this sort of thing to reoccur, but not to treat it (with antib's) until it does reoccur, just treat what she has and watch her.
Claire was switched from 1 liter of O2 down to a half liter. A good sign, and breathing well. She's plumped up a little (maybe mom's imagination) from the IV and getting in those nice fluids. Mom knows she made the right decisions having Claire come to the hospital, tho inconvenient, her little lungs couldn't take a prolonged bout with pneum, and it has to be fixed so she can eat well and move around... go to PT, etc.
Claire started sucking down a shake and drank close to 6oz in one feeding.. mom was very pleased to see she was hungry and not afraid to show it... showing signs to mom (hand to mouth as she seems to be doing more and more of) and fussing when she's hungry. Mom is hopeful for a full recovery over time, but certainly enough of a recovery that Claire will be out of the hospital soon. Dad is holding down the fort at home... great guy that dad!
Claire's hospital has wireless, so mom is able to get emails and Claire updates out. yeah.
Considering how sick she is, she seems to be doing well all things considered.
It sounds crazy, but being her in the hospital, mom's able to ask questions about stuff they've been doing over the past year, get updates on nutrition (they sent in a nutritionist - to see one normally would have been jumping through hoops with insurance referals, etc) and the respritory folks, so much. Everyone has been great and mom's been picking their brains.
Claire hasn't been here since a year ago Easter, and the family is thankful for that, guess God decided mom needed a little refresher course on a few things. Mom esp like that the nutritionist is getting Claire some powder that will instantly add calories to her food... isn't that cool? Mom was able to ask about cows milk, and eating more solids... oh the things you learn! Claire is going to try strawberry flavored pediasure today. Mom isn't to crazy about it as it is sooo incredibly icky sweet. Claire will love it tho (and may never drink isomil again). It is a big step, but one I'm sure she can take. The nutritionist will be monitoring Claire's intake closer than usual and determining what will work for her during her stay at the hospital.
Mom also got a refresher on 'thumping' or chest percussions (not compressions - she learned the difference quickly).. the how tos and when tos... even got a new canula for Claire as infant canulas' aren't the easiest things to come by.
Claire spent much of the day sleeping, and so mom woke her and tried to get her to eat. She fixed some Pediasure that the nutritionist suggested and brought by. It was strawberry flavor and very very sweet. Mom mixed it with rice cereal for thickening and Claire wanted NO part of it. Mom eventually got an ounce in her. Then she mixed a shake up (4oz) and then added 1oz of pediasure to see if Claire would drink it that way (Pediasure is full of calories -- and evidenlty, sugar). Claire wanted no part of that and after another 1/2 oz of that she started having dry-heaves and wanted to throw up. Mom wanted to join her, that stuff is soooo sugary sweet, and her little tummy was just too sensitive for that.
Mom mixed a shake for Claire, no Pediasure, and she was still not interested. Too bad too after she had a pretty good lunch. Mom didn't bring a spoon, so she's only giving Claire food from a bottle until Dad can bring one by. Claire's temp went up to 100 under her arm, and the nurse suggested giving mom a tylenol to 'nip it' but mom opted to wait, in case it didn't go up. Mom knew that if she had tylenol for a fever, the temp would come down, and mom wouldn't really know if it would be a high fever and wanted to wait until it was closer to 101, the nurse agreed and said she would do whatever mom wanted. The nurse monitored Claire's temp and it didn't get that high, so she went the whole night without any fever reducer... and without a high fever. yeah!
by 11pm, Claire drank about 3 oz of shake and seemed ready for bed. Mom put her on her tummy for sleep. She had a few seizures tonight, so the nurse will keep an eye closely on her O2 sat levels and mom will try to get some sleep... but a little worried about the seizures. It would be sad to come in for pnuem and have the seizures become a problem, but this won't be the first time that has happened. Thanks everyone your you show of support and prayers.

August 1
"Just under 15lbs"

Claire wasn't coughing too much today, but after her fever last night, mom knew she needed a dr's opinion. Mom called early and spoke with the nurse who gave her a tentative appt pending consulting with the dr. The nurse called back and said that Claire would get a later appt in the day so she could get bloodwork (two tests) and a chest xray. Mom agreed and the appt was set at 3:30pm.
Claire and mom were out of the house early to get her tests done asap. Mom opted to go for chest xrays first so she could get fluids in Claire before the bloodwork. It seemed to take forever for the xrays, oh the waiting, then after the pix/xrays were taken, the continued waiting. Eventually, the staff came out with the pix and handed them to mom with instructions to take them to the drs office.... now? or for the appt? a little confusing, so mom called the drs office, they said after bloodwork and at the appt she could bring them. Mom agreed, but when she went for bloodwork (and it was pouring down cats and dogs -- the beginning of how the weather was to be for the whole day -- for all their errands) mom noticed folks standing outside huddled under a small overhang. She went over and looked in the door, then realized those folks were waiting outside because the place was packed. Guess that happens on Mondays. Mom was disheartened. Wait for an hour for bloodwork with all those sick people, who were all clustered in a small room, or move on? She didn't even go in, just closed the door and got back in the car, in the rain.
Mom knew that the order for the bloodwork was faxed there, but that didn't mean she couldn't get the original and try a different lab... so off in the rain, she went to the drs office, dropped off the xray pix and picked up the order for the bloodwork tests, and back in, through the rain with Claire, who didn't seem to care much as she was well protected under mom's umbrella with a light blanket over her legs.
Mom left and chose another lab. When she walked in she saw an old friend and signed in where there was only about 3 people in the waiting area. Mom knew she made a good choice.
Once in, Claire's little veins were still quite dehydrated, so it was tough getting out blood, and mom wasn't sure the lady had done too many babies. After two pokes and a minute amount of blood, mom asked if they could at least try the first test with that blood, and they kindly agreed to try. Meanwhile, the big question was, do they stick Claire once more, this time in the foot, for the second test, or just skip it altogether. Mom was up in the air, they discussed going to another lab recommended by the ladies there, they called ahead and found out the lady they said would be good for Claire had gone to lunch... just left, and Claire's appt would be in about an hour. Meanwhile, as mom was holding Claire during the second stick, Mom got a call. She couldn't answer the phone at the time, and when she looked, it wasn't a familiar number. She called back while waiting for the first lab results (to see if they could use that small amount) and it was the dr.
He said he looked at the xrays and she had a significant amount of pneum. He recommended the hospital first thing, but knowing how mom felt about Claire being there, offered to see her at the scheduled appt and give her an antibiotic shot at that time. Mom felt that the ped was sure it was pretty bad, or wouldn't have recommended the hospital right off, so she called dad, and then Claire's nurse that she had when she was in hospice to run things by them. Dad felt like mom would make a good decision either way, the nurse felt the same way, leaning towards the hospital.
Mom felt she needed help. She didn't like the idea of going to the hospital, she tends to lose so much control, but the dr said that the ped they'd have in the hospital would be the same as the one mom loved for Claire... a very positive man where Claire is concerned, the one that gave mom hope when Claire was really bad off a year ago last Easter. That was a good sign to mom.
Claire's anti-seizure meds were due within mintues, but mom wanted to get Claire on the antib's, IV fluids and O2 asap... so she opted to take Claire straight to the hospital after picking up the pix from the dr's office, and she could get the meds there... tho likely late.
Once they arrived, mom told the lady they were there to be checked in, the hospital had no paperwork and asked mom to sit down. 10-15 minutes later, mom asked if maybe they were expecting them in the ER. Perhaps that made the lady think twice, and asked mom to call the dr's office. While mom was on hold at the drs office, the lady said, 'We'll check you in, you are going to the PICU right?'... hmmmm... how did she know Claire was going to PICU (Pediatric ICU) without paperwork, and while just sitting there? ...hmmmm...
Mom wasn't too thrilled with her, and time was essential to mom! To top things off, once in the room, one of the nurses said, 'you came through admissions? there's no hospital bracelet on her'... nope, there was never one put on, since once she decided to finally admit us (with no paperwork supposedly), she just asked mom to sign here and a elderly gentleman walked them up to PICU.
Mom mentioned things probably would have gone faster if she'd gone to the ER.
As mom enter the PICU with Claire in her carseat, the nurses were looking around for a 2 year old... they realized it was the small baby mom was holding and said, 'I think we need a crib for this one'. They were terrific, scrambling for a crib and taking her stats, finding out about her meds, etc.
As things settled down, so did Claire and eventually went back to sleep (as she had done most of the day). The little Baire was exhausted from being sick and from the errands and poking and fighting with mom not to eat. She still was mad at mom for bringing her to the hospital, but mom was confident it was a good place for both of them. Mom needed some help. After trying the decongestants, back thumping, O2, antib's and all that other stuff, she felt Claire wasn't getting better and needed to get help from the professionals.
Later in the evening, mom noticed an ant crawling across the room floor... hmmm. Didn't think much of it until later she went to get a towel by the window and noticed several others. She asked the nurse what she thought and the nurse offered to switch rooms, so they did. This after dad had left and called close family with the room number/phone number of where Claire was.
Even tho the recliner isn't comfortable, there's a lot to be said for sleeping well from peace of mind, verses comfort... Lights out at 10pm, (just before the nurse came in for her meds, and a couple hours after her fever spiked to 102.7 - under her arm). It was a long and exhausting day, but someone told mom recently, when things are really good, they get bad, when things are really bad, they get better... so Claire must get better, mom has told her that, and she understands it. :o)

July 31

Claire 's still coughing, so this morning mom will try an antihistamine to dry her up a little. It should help her throat a little to soothe the coughing and should dry up some phlem so she can stop the gagging and keep some food down. The drawback is that it will stop the coughing and not let her cough up some of that gunk that so urgently needs to come out, but without the food, Claire has no energy and needs it to fight the infection and energy just to eat.
Tonight - just before 10pm, Claire' had a fever and it spiked to 103.2 (under arm). Mom was upset and frustrated, as she'd been on antib for a few days and was still spiking fevers. That settled it, mom would take her to the dr tomorrow... but for now, Motrin and wet washclothes for Claire's head.
The fever came down to 102 by itself, and Claire was signing to mom that she was hungry, so mom fed her, only to see the food come back up (fevers tend to do that) and so off to the bath with Claire.
The kitchen is slowly becoming in disarray, so the bath had to be moved from the kitchen sink to the bathtub. Claire did well, didn't fuss a bit and the fever slowly came down. She was dressed and put in the bed with mom, dad and her O2. She slept through the night. Of course mom was up every hour or so checking on her breathing.

July 30

Claire was coughing much of the night, and has been tending to gag some when she eats. Mom as avoiding a cough suppressant, as she wanted that stuff to loosen up, but since it isn't real loose, and only takes away from her eating and keeping it down, mom decided to give her a cough suppressant around 1pm. Claire was warm this morning, but no fever.
She is still a bit under the weather, she spends her time, when she's not on mom's lap eating, she's on the bed or in her crib with the blowby O2.
She ate pretty well this morning, mom fixed her some banana mush (banana/rice cereal with formula), and it was the first formula she'd had in a few days because of her congestion, but mom is opting for calories now.

July 29

Claire was coughing some during the night, so another restless night for her and mom. She was up at 2:30am crying, so mom got her some fluids and cleaned her nose up a bit and she went back to sleep - mom too, around 3:30 or 4am.
Around 4:30am Claire's big sister was up, as expected since she'd gone to be so early the night before, and she snuggled with mom for a little bit until announcing she had to go to the bathroom, mom assuming she had to 'go' but instead heard big sis throwing up. Dad got up to check on her - she was so thoughtful to at least throw up in the toilet. She drank water and came back to bed, and about 30 minutes later, announced that she had to throw up again, and did so twice on her way to the bathroom, thank goodness for wood floors, paper towles and antibacterial spray(easy cleanup). She came back to bed and mom handed her a bowl for the future and dad suggested she hold off on drinking water for at least a few minutes. She didn't fall asleep, but rather just tossed and turned. Needless to say it was a long night of hand washing and cleaning up. Claire slept through that part at least.
When Claire got up earlier, mom gave her meds, and some squirts of coca-cola to help loosen that nasty cough. It loosened alright as Claire did her cough-cough-gag-throw-up routine... different than her sister who gave no real warning with gagging (sis must have eaten something bad).
Dad had some errands to run and mom had an afternoon meeting, so they coordinated schedules and got up to get ready for the eventful day.
Around 3pm, Claire's fever came back, around 101.9 (under arm) dad let mom know - she was at work - and he called to get the dosage for the Tylenol. Poor dear, this after she threw up again for her daddy.
Claire had another fever in the evening, mom gave her motrin as it was almost bedtime. She didn't eat great today, but still putting down some food, so mom won't worry, the weight will come back once she is well again. Dad bought Claire a new humidifier for her room, this one is cool air humidifier with a big water tank and she surely deserves a new one.

July 28

Claire slept much of the day, having a fever later in the day. She didn't eat great - and got some coca-cola by dropper to loosen up head cold, probably no appetite from all the phlem in her head. Mom, going in to work in the morning and taking the afternoon shift with Claire, worked much of the day with her to get her cleared up and eating, and she ended up with about 10oz of pedialyte and bananas mixed. Mom mostly squirt it into her mouth, keeping her hydrated while she fights off her cold. Mom also requested the antibiotic that the dr called in a while back and started her on it today and is confident it will help the peanut get back to her old self quickly. Mom just has to keep pumping in the fluids and add calories (like bananas) where possible.
Claire's sister was sent to take a nap around 1pm, but didn't finally get to sleep until closer to 4pm... around 7:30pm, she was still sleeping, so rather than wake her up, mom opted to let her get up when she wanted and feed her dinner then, she probably needed the sleep, or was coming down with something, and getting a 6yearold to sleep is tough enough as it is, much less waking them for an hour to eat then sending them back to bed afterwards. Mom went to bed around 10pm, shortly after Claire. Dad saved some dinner for Claire's sister for when she got up. Dad and Claire's brother watched Star Wars, as a friend had given them the first three episodes released, and Claire's brother was nearly done with his summer reading, so it was a treat for him.
Also in the evening, mom was able to talk with another mom with a child who will be attending the public school that Claire's mom is looking at for the fall. After the talk, mom feels that she is convinced that Claire will need to go to the public school, tho she absolutely adores the daycare that Claire currently attends. She's been up and down with the decision so much over the past week or two, and finally has determined that a decision needs to be made for Claire, to give her the best opportunity to be surrounded by teachers (and a nurse) who have much experience with kids like Claire and what will give her the most advantages with finding proper equipment and skills to reach her potential.

July 27

Claire had her therapies today. The therapist didn't discuss the stander much as they are planning on having the local wheelchair guy order one or two for Claire to 'testdrive'. The therapist also noticed that Claire was not herself and fussy. Since she seems to just have a head cold, mom felt that the therapy migh be good for her, and it did seem to loosen up some head congestion as 15 minutes into the session Claire's nose began to run and didn't seem to stop for hours.

July 25

Claire slept through the night... must have been the tylenol. Mom woke her in the morning for meds, sponge bath and mushy food. She ate great! Mom left dad in charge with laundry on the couch and a messy kitchen. He got Claire ready for daycare and took her in, while the kids got ready to go to the pool today with the sitter.

July 24

Claire was up early in the morning, not really wanting to eat, and then later back to sleep.
She was up later in the morning for church and mom got her ready and off the family went. After church, they were off to Claire's uncle's home for swimming. Claire fell asleep in the air conditioning while the other kids (and mom and dad) splashed in the pool, checking often on Claire.
In the evening, she had her nebulizer treatment and meds then Claire got fussy. She went to bed after some nibbling on her food (shake) and woke up very sad... crying loud and for a long time. Dad was amazed, mom felt it was probably good for her lungs, but still wanted things to be 'right' for Claire, but couldn't figure out what was wrong with her. sad. They were up past 11pm, she eventually fell asleep on mom's chest and mom put her to bed.

July 23

Claire didn't sleep through the night.
She nibbled all day and didn't want to play with mom much, so they just hung out all day. Claire slept for much of the day with her blow-by oxygen and mom was hoping a little sleep would perk her up some... didn't seem to do it, but sure didn't hurt any either. Claire isn't eating too great and mom senses her peanut is losing a little weight. Fingers crossed she can fight this one with more eating and sleeping.

July 21

Claire was up at 4:30am... fussing. Mom held her and tried to feed her, but she was too congested to eat, so mom squirted some in her mouth and she drank a very little and decided she wanted to go back to bed, and she went back to sleep. The alarm went off shortly after mom got back to bed, so she was up again and learned about more bombings in London just before leaving for work (running late).
The sitter for the older kids called in sick, and with Claire still under the weather, mom decided to keep Claire home today too. Dad will stay with them as mom has a lot of work and meetings today. Mom decided if Claire isn't much improved by this afternoon, she will try to get an appt with the dr.

July 20

Claire had PT today and instead of getting therapy, mom sat with the therapist and looked over catalogs to determine the type of stander Claire needed. They wrote down a few names, discussed her needs and Claire's therapist was going to evaluate them and possibly get a demo for Claire to try out.
Claire slept well in the morning after a nice bunch of rice/banana mush, which she seems to enjoy for breakfast.
Claire had OT too, and she did well, learning to prop herself up in a sitting position WHILE eating... she worked really hard at it, and fussed some too when she got frustrated... a good session all the same.
Claire's big brother had a baseball game again tonight. He did well. Mom was introduced to a woman who is now Claire's case manager at her health plan... it is a very small world, as she is the room mom for one of the family friends who is a teacher (and made the introduction) and she was also one of the NICU nurses when Claire was born. Also, one of the other mom's (who's son is on Claire's brother's baseball team) was also one of the NICU nurses when Claire was born. Mom was able to chat with those ladies during the game some, tho mom and Claire arrived late as Claire's therapies went up until just before the game started.


Claire went to school today. A little congested but overall good health. Mom is hoping Claire is getting over her cold (fingers crossed).

July 18

In the middle of the night, mom was up turning off and unplugging computers as a big storm was going overhead... the lightening filled the house, and no one was up but her, amazing! Claire slept through the night but when mom woke her up, she had a nice green runny nose.
Mom cleaned her face with wet wipes and little noses saline drops and the 'nose sucker' syringe to clean out her nose since she still hasn't grasped the idea of blowing her nose. Mom worked to get a couple ounces of bananas/strawberries with some pedialyte mixed in, then mom put her back in her crib with the blow by O2 and let her rest a bit and left dad with the kids and she went off to work. Dad will likely put her on canulla today for better breathing.

July 17

Claire was up at 5am and mom gave her her meds a bit early and she drank a few oz of shake, then back to bed.
Claire had a pretty good day, she went to mass, then afterwards she went to her Uncle's home to hang out with him and her aunt while mom took the kids in the pool and taught Claire's big brother to snorkel. He did very well.
In the evening, everyone went to bed early except for dad, he was up until close to midnight working on the kitchen walls and vents.

July 18

In the middle of the night, mom was up turning off and unplugging computers as a big storm was going overhead... the lightening filled the house, and no one was up but her, amazing! Claire slept through the night but when mom woke her up, she had a nice green runny nose.
Mom cleaned her face with wet wipes and little noses saline drops and the 'nose sucker' syringe to clean out her nose since she still hasn't grasped the idea of blowing her nose. Mom worked to get a couple ounces of bananas/strawberries with some pedialyte mixed in, then mom put her back in her crib with the blow by O2 and let her rest a bit and left dad with the kids and she went off to work. Dad will likely put her on canulla today for better breathing.

July 15

Claire was up all night last night. Crying and fussing. Dad had her until about midnight and mom took over. Good thing she went to bed at 9pm last night so she got a good 3 hours of sleep in ;o)
Claire was miserable and mom thinks she's starting to get a cold and is congested and that is what is making her uncomfortable. She wasn't too interested in eating so mom gave her some mylacon to see if it would help her if she had gas. After a while, Claire must have just worn herself out because she finally fell asleep and mom put her back to bed, but still was letting out a cry about every 30 minutes, but each time mom checked up on her (to be sure her leg wasn't between rails or whatever) she was sound asleep. Little dear.

July 14

Claire slept through the night.
Mom was up this morning getting ready for work before waking up the princess. She got Claire's breakfast ready, same as the past few days, banana & rice cereal with a little formula to make an oatmeal type mush. She loves that stuff and first thing in the morning Claire is so hungry she'd probably eat most anything anyway. After breakfast, mom took Claire to daycare and got there a little later than mom would like. She's thinking of taking her earlier and letting them feed her breakfast. That would be really big for mom (major apron string cutting there), but it would get mom out the door even earlier in the morning, and she thinks the daycare would like Claire to get there earlier too. Mom is trying to get used to the idea.
Claire had a good day at daycare, but in the evening seemed like she was getting a little sick. She woke up shortly after she went to sleep and dad checked in on her.

July 13

Claire slept through the night.
Mom woke her up late in the morning as mom had a lot of work to do, and Claire was sleeping so nicely, she probably needed the rest. Mom got a lot done and later in the day they went to Claire's PT appt, where Claire tried the stander one last time before taking it home. She fussed most of the time she was in it, and mom didn't know if she just didn't like it, or was hungry again. The stander is completely upright and puts Claire in a vertical position. Mom agreed with the therapist that Claire may not be ready to be thrown into that position yet, her legs probably need a little more strength to hold up that ever growing, weight gaining little body of hers. A stander that has some sort of an incline would likely be better, so the next question would be, should Claire be inclined on her stomach, or on her back. Mom knew there would be pros and cons either way, and wanted to get one that would work with her neck alignment and strength and her spine strengthening. Her therapist seemed to think that both ways would have advantages too.
Claire had OT also, and she was put in a large bowl looking seat and the therapist would put her in a sitting position, she would rock her to one side to see if she would prop herself up with her arms, and Claire did a great job! Then she'd rock her to the other side and Claire would work hard on that side too. Mom was very pleased with how well Claire was doing and how much she is trying to learn to sit and prop herself up with her arms. The kid is amazing! The therapist took Claire for a moment to hunt down Claire's favorite toy and one of the other OTs saw Claire and commented on how chubby her little legs were. The therapist told her that she should let Claire's mom know as she would be so happy to hear others say that Claire is getting chubbier! The therapist came back with Claire and the toy and told mom the story... mom as happy to hear it wasn't just her thinking Claire was getting bigger... she certainly knows Claire is getting heavier... all the more reason to get that baby standing sooner and learning to strengthen those legs for walking, a very complex process, but one that will help mom's back in the long run.
In the evening, dad arrived home with the kids. Claire's big brother had his first baseball practice (ever) and Claire's dad was amazed at how well he did... he will be in a summer league for his first time playing so the pressure (theoretically) won't be so tough. The family ate dinner and dad's friends came over to visit. Mom went to bed after Claire's bath and bedtime routine and the boys went 'out', but dad was back in relatively early as he had a big project to work on.

July 12

Claire slept through the night like a little darling. Mom woke her up this morning, she was so very tired. She got a bath first thing, then a cute outfit and drank 7oz of shake. Afterwards it was off to daycare, and mom off to work. A little late however as dad's computer needs a complete reformat, it is just time after two years of hard use and a lot of junk building up on it... just time to start new. Mom didn't do all that this morning, but just finished some backing up and DVD burning of some of his important files (hopefully ALL of them).
Dad's band was suppose to play down on the coast, but the place he's suppose to be playing was on the cover of the local newspaper this morning (and pix of it on CNN over the weekend) - 4 feet of flood waters in the place (in St. Marks, Florida) so his 'gig' will likely be cancelled. But dad said not to rule anything out, those folks down there are very determined people and he wouldn't be surprised if they were opened this weekend afterall. People are tough.

July 11
28 months

Claire was up early and hungry. Mom fed her and was back in bed for a short while.
Claire had PT late in the day, so mom got a lot of work done in the meanwhile. The Children's Home Society had a stander they put aside for Claire, so today at PT, she got to try it out. She did really well as far as not crying or fussing while mom and the therapist tied her in and tried to adapt it as best as they could. Mom felt it was a little to straight vertically, and would be a big jump for Claire to try to stand upright first time. Perhaps one that was on an incline at first would be better for Claire. Mom and the therapist agreed that Claire needed a little more work with the stander, so she left it there for the Wednesday PT appt, but will likely bring it home for the weekend to practice with. If Claire does really well, they'll hold onto it. If it causes too many 'red marks' from pressure points, then mom will hope to get a different one.
The family had a nice evening. Mom made a vat of spaghetti sauce (so they can have spag once a week) and after dinner the family went to the local home store to get ideas for countertops and backsplashes. Not much luck as mom and dad need a counselor when it comes to agreeing on home decor... they are pretty close in taste, but pinpointing one selection is often difficult for them.
Dad fed Claire as mom started backing up his laptop for a harddrive reformat to be done at some point in the very near future. After feeding Claire, dad put her to bed, but she was fussing and went into a full blown cry. Mom picked her up to feed her more, and she acted like she was hungry, but not wanting to eat. Maybe more teeth, so after the gas medicine, mom tried some tylenol and squirting some food in her mouth for her. Still fussing and acting full now, so mom did a bunch of leg exercises including bicycles with Claire and got some gas out (a polite way of saying it), and Claire calmed down for bed. She went right to sleep... could have been the tylenol on the teeth too, no telling.