Claire's Journal -- 20th Month
November 10   Claire was fussy, and mom is thinking that with her random cries, it is time to get a new prescriptions (even tho there is almos 1/4 of the bottle left). In the morning, Claire looked like she had a mild seizure. Dad picked it up today, so tonight she will get her first 'new' dosage and hopefully everything will be back to normal. She had her hospice nurse come by with the scale, and Claire weighed in at a mere 12lbs 10oz. A weight loss from her last weigh-in. She hadn't been eating too well lately, and on a good day, she has 18oz, but was throwing up some, so mom is really hoping the new bottle will bring her back to par.
November 9   Claire slept through the night. She had a terrific morning, all smiles for mom!
November 8   Claire slept through the night. She went to daycare and had a PT and OT appt today and worked very hard. Especially at PT as she worked her legs and did lots of rolling over while aided by the therapist. In the evening she ate really well and was the perfect baby, taking her meds, finishing up the end of her bottle and falling right to sleep after laying in mom's arms for only a few minutes. Mom put her down and she was so exhausted she hardly moved.
November 5   Claire was up once with dad and he didn't say anything about her being up too long, so it must have been just her fussing and wanting to be held.
November 4   Claire was up once during the night. She seemed hungry, and she drank about an oz or two and went back to sleep.
Mom woke her for meds and breakfast. She has been in a terrific mood all day long, including her daycare. She had about 6oz in the morning with mom, and another 13 at daycare. At home, she drank about 2oz at the end of a bottle, then another 4oz before falling asleep on the couch. Mom woke her for her evening meds and held her for a while while she went back to sleep. She was in bed around 10pm, and mom was too. About 25oz today, all shake, lots of calories!
November 3   Mom was so happy Claire slept through the night... but mom was up off and on, checking the election results, and then rolling over and going right back to sleep.
In the morning, it appears that George W. Bush had won, but until the final speeches were given, no one was making that announcement. Mom said no matter who won, she was hoping for a landslide so it wouldn't be days of unrest until the winner was determined.
Claire had a hearing appt today to check her aid out, and the humming seemed to have stopped, so she wore her aid most of the day... good thing too, since she had music therapy. She had PT before music and Mom, Dad, Therapist and Claire were able to check out the two chairs, the KidKart and the Kimbra Spring to see which would work best for Claire. It seems unanimous that the Kimbra was the better chair, so the Therapist will write up a new justification and hopefully it will be approved by insurance and Claire will be fitted. (fingers crossed). Claire was on top of her game today at PT, very alert and working very hard on her legs and neck.
Claire was a bit tired in the morning, probably from her morning bath, but she was awake in the afternoon and being a sweet little peanut!
November 2   By 3am, the two of them had come back into the room. Evidently, they'd both fallen asleep watching tv, and Claire actually stayed asleep for mom. When mom got up, she got the kids ready and woke dad at the very last second so he could put on a baseball cap and hop in the car to take the kids to school while mom got Claire up and ready and she got dressed for work.
Hmmm... if I could vote... ?Mom took Claire to vote, Dad met them. Claire got her own "I voted" sticker, but they wouldn't let her vote... She was disenfranchised, they said something about her age, but she was defiant as she knew she looked younger than she really was. She's still trying to figure out a way to work the system, afterall, she was up for all the debates, she knows the issues... she just wants a toddler's voice to be heard. Mom is still trying to figure out why folks vote early. There were very long lines all week for people to vote early, but on election day, there was no lines no waiting. Claire even sat on the table in her carseat right next to mom as mom voted.
Claire went to daycare and, after drinking 5oz of ped/juice for mom in the morning, she had another 13oz of shake at daycare. At home she drank the rest of a 4oz bottle, then another 8oz all before going to bed. Mom fixed another 3oz bottle, wondering where Claire would put it, as she seemed full, but still hands in her mouth. She put Claire in her bed while she fixed the bottle, and within 3 minutes, she was back to get Claire, who had fallen asleep. She slept through the night!
November 1

Claire was up pretty much all night. She finally started to doze off at 2am, but then woke up crying. Mom was exhausted and getting frantic as she'd already given Claire mylacon for gas and tylenol for teeth. Claire was so unhappy. Mom woke dad up, she figured he'd gotten enough sleep by then, and asked him to take over. He very sweetly acknowledged that she needed a break and let her get some rest.
Mom woke up in the morning and Claire had been sleeping since her dad had worked his magic. All mom knew was that 3 hours of sleep was better than none and she had a big meeting that afternoon and needed to get ready for Claire's Ped Orthopedic appt.
The appt went well. They took xrays of Claire's spine and neck and saw nothing wrong aside from the twisting. The dr said it could all work itself out (straighten itself out) as she grew, but thought that a second opinion would be in order. So he suggested a visit to Shands Children's hospital. Mom needed to make an appt with the geneticist there too, so it could be a two-bird-one-stone thing. He reiterated that seating would be beneficial and mom said that it was in the works.
After the appt, mom went over to see the new Kimba Spring chair that had come in and compare it to the KidKart to see if she liked one over the other. The Kimbra seemed a bit lighter -- both were very heavy and mom was wondering how she would manange this 'stroller' without quite a few visits to the gym to work out... *QUITE* a few... heheheh!
Mom got to work and got to her meeting on time. Then back to work to get some new ideas rolling.
Mom took Claire back home and dad watched her until he took her to her PT appt. Then he took her to daycare were she was about 2 hours and 5oz later and mom brought her home after a long day at work. At home, Claire didn't drink much and mom put her on the couch with a bunch of toys. Evidently, she wasn't too impressed with mom's selection of toys, as mom came back to check on her after starting dinner only to find she fell asleep sitting up.
Mom thought they might be in for a long night, so she got Claire to bed a little earlier than usual (including meds a little earlier) and went to bed herself. Sure enough, the little peanut was up about 11pm and dad came to get her.

I'm a bear!!  Hear me roar!         Like my paws?
October 31

Aren't I cute?It was a busy day, and after church, Claire's sister took a nap and her brother watched football and played in the yard. Claire had a fun Halloween day. She dressed as little blue bear and was cute and cuddly as her usual self. Her sister was Cinderella and her brother was the Grim Reeper... boys will be boys. The kids had fun dressing up and they went to a retirement home, then off to visit friends and hit the busy neighborhood for lots of candy. Pictures coming soon.

October 30

Claire had a pretty good night. She just hung out all day on the couch... eating and playing with the kids. Mom spent much of the day cutting out a dress for Claire's sister, and fixing a costume for Claire's brother. They all watched the big football game and were very disappointed with the outcome. Oh well, just a game.(x-large pix). Claire did have a good photoshoot while enjoying the game. She was decked out in her football 'garb'.

    Time for the game!Ready for the big game!
MOM!!  What did you do to my hair?   It's sticking straight up... did Grandma have something to do with this?
October 29

My cool hat!Claire was up until after 1am. She settled down several times, but then let out a fuss and started crying. Mom started by feeding her, but after a couple oz she seemed disinterested.... mom put her down... Claire started fussing... mom picked her up... tried feeding again... Claire drank a little... mom put her down... Finally, mom tried Tylenol. Claire had her hands in her mouth a lot and with that new tooth, the droolling and the basic overall pitiful look, mom is thinking it would help her out a little, and maybe everyone could sleep. By 1am, Claire was still not happy, and her cries were just as pitiful, so mom gave her some Mylacon. Mom also noticed a very firm BM in Claire's diaper, so perhaps she was also working on that. Shortly after the Mylacon, Claire settled down and finally stayed that way. Good thing too, as mom was running out of 'tricks'.
Claire slept until mom woke her in the morning. She got her antibiotic, seizure med, decongestant and then finally her bottle. Of course mom took some pix along the way. A face cleaning and a cute outfit later and Claire was off to daycare and mom to work.

Hi!   Yummy hands!
October 28

Claire's treatmentsClaire was pretty tired today. She woke up to find the Red Sox did win the World Series. Dad was really happy, but nothing compared to Claire's brother bouncing off the walls. Claire is hoping that dad's taping of the final game went well.
Mom gave Claire her nebulizer treatment, since she didn't get one last night (the Peanut was just too tired).
It was her first day back to daycare and mom was glad to be going back to the office. Mom started her off with 3oz of Juice and pedialyte and then she finished 9oz of shake at her daycare. At home, she drank another 8oz, but never seemed to be full, but very tired. Mom gave her an evening nebulizer treatment and fed her a little more then put her in her bassinet around 10:30pm.

Where we goin' mom!?   Can't wait to get going!!
October 27

Claire was up at 4am, appearing hungry. Mom was certain that if she fixed a bottle, Claire would be back to sleep before she was done fixing it, so she got up and checked on her in about 2 minutes and Claire was back asleep, no bottle.
By 6:30am, mom was up helping dad get the kids off to school and Claire was just waking up for bottle and meds. After she drank, mom cuddled with her and she fell back asleep in her arms, so mom put her back down for a morning nap.
Claire was up around 11am for her bath, then PT and OT, and home for Music Therapy (MT). She was very vocal and energetic all morning and her PT was very impressed. She had some nice loose coughs and even coughed up a little phlem, so they are finally getting more productive. After MT, mom tried giving her her antibiotic, but she had just finished a bottle, so she didn't want anymore to 'eat' and pushed it out with her tongue. Shortly afterwards, her hospice nurse came by to check up on her and she had fallen asleep (MT is very relaxing), so her nurse had lots of cuddle time with her and weighed her in at 13lbs 3oz. Her nurse said that mom should continue the nebulizer treatments at least two more nights and that the antibiotic will really make a difference by tomorrow. She will check back in on Claire on Friday so she can leave a note for the on-call nurse at hospice. She said Claire was sounding much better already, and not losing weight, she looked good, good color too.
Claire fell back asleep after her nurse's visit, in her boppy pillow. Mom will let her sleep for a while, she had a long, busy day.
Mom was able to make a little side trip today while dad watched Claire and mom picked up some fabric. Claire's sister wants to be a Disney Princess for Halloween, and mom got some fabric for Sleeping Beauty (plan B will be Cinderella, as she already has that dress). Claire's brother wants to be the Grim Reeper, so mom just needed a ton of black fabric... the challenge there was getting it for a good price, not a problem. Mom will be very busy on Saturday getting costumes ready for the big night. Claire's brother has testing starting on Monday after Halloween night, so there's a real challenge there. Probably a Sunday afternoon nap will be involved.
In the evening, Claire was planning on staying up for the lunar eclipse and the Red Sox game. As she and mom played on the couch, mom noticed something new in Claire's mouth... a TOOTH! Her second one!!! Mom was so excited!!!
Later, mom took her out to see the moon, but her eye's started getting heavy... it was nice and dark out and not too cool, just a beautiful evening and all that fresh air was affecting her. Claire figured the Sox would be on again tomorrow night, because the odds of them sweeping the World Series (after winning 4 games in a row in the playoffs) was unheard of. Especially when they hadn't won a series in 86 years, let alone a sweep.... Claire wasn't too worried about missing out, besides, dad was taping tonight's game. Claire went to bed and went straight to sleep. Good baby. Mom followed shortly behind her.

October 26   Claire slept comfortably through the night. Mom pulled the bassinet closer to her bed so she could keep a closer eye on Claire without putting her in the bed with them. Claire still has the cannula on for extra O2, but mom has it set pretty low. Mom lowered it last night as Claire's little nose was tender and she had a slight nose bleed, likely from the oxygen, tho it goes 'through' water in the concentrator.
Claire was up at 6am and crying. Mom gave her a couple oz of food, but at first she just wanted to be snuggled and happy to be in her mommy's arms, then she decided she was hungry and ate, after her meds. She snuggled a little more afterwards and fell asleep. Mom put her in her bed and went to help dad get the kids ready for school.
Claire slept until close to 1pm. Mom felt that sleep was the only thing she really hadn't had much of in the past few days, since she's been eating so well, and thought she would need it most. At 1pm, mom pulled the covers back and she eventually woke up. She had her antibiotic and drank another 8oz of shake, the last 2 had formula in it. Mom took a shower and when she got out, Claire had fallen back to sleep. The problem is her 2pm meds, mom will have to wake the peanut for them.
Mom called the hospice nurse to double check that the dosage was what the dr prescribed. The nurse said she didn't get why the pharm couldn't read the script, since she wrote down the dosage for her records from the original script at the drs office. Okay Okay... time to change pharmacies... there is a new one going up a mile from Claire's home, mom will likely switch to that one when it is opened.
Claire had a good evening, finishing off the day with close to 22 oz. Mom put her on 'blow by' oxygen tonight and Claire had meds and fell asleep on her boppy on the couch before mom could give her her bottle. When mom moved her to bed, she woke up and nearly finished her bottle, as she fell asleep in mom's lap drinking. Mom put her to bed close to 11pm and got to bed around 11:30pm too.

October 25
13lbs 5oz!!


Claire was breathing hard at 3am. Mom got up and cleaned out her nose, gave her a decongestant and changed her position and put her back down to go to sleep. She seemed to be breathing better then.
Mom woke her up before breakfast and cleaned out her nose again (saline and nose syringe) and gave her another decongestant. Claire drank 3oz of shake and went back to sleep. She wakes up every 15 minutes or so, and then looks around and goes back to sleep. She isn't sleeping too deep.
Mom spoke with the drs office and the ped won't be in until this afternoon, so Claire has an appt with him today. She spoke with Claire's hospice nurse who said she could come by around noon, or meet them at the drs appt. Mom is hopeful an antibiotic will do the trick, but thinks that after the appt, there will be a chest xray ordered and probably a blood test to help determine the nature of what Claire has. The poor little peanut.
The drs visit went very well (mom thinks). Claire was up to 13lbs 5oz!! He listened to her and agreed her lungs were 'gunky' but said they'd been much worse before. He said that Claire could use help from a nebulizer, used for opening bronchial tubes, as she was wheezing. He wrote a prescription for that and for an antibiotic. Mom's favorite for Claire, Zithromax. It was the one that seemed to pull Claire through with every pneum (when the drs would finally give it to her). Mom is confident Claire will be on the mend soon (fingers crossed and prayers to heaven!). No bloodwork, no xrays. And that's more than fine with Claire.
Claire's hospice nurse met them at the drs appt, and helped Claire and her mom at the place where they needed to pick up the nebulizer. She's so wonderful!
Afterwards, mom picked up the kids from school and dropped off Claire's prescriptions and then home. Dad said he would go pick up the prescriptions a little later. Mom had enough solution to give Claire a nebulizer treatment shortly after they got home.
Mom fed Claire more food, this time, adding some formula so it would stick to her 'ribs' and Claire enjoyed it. Then mom and dad fixed dinner and mom put Claire back on her oxygen. She'd been off it since just before her dr appt and had very nice color the whole time.
After dinner, dad went to get the prescription, but only came home with the nebulizer solution. Mom hated to tell him there were two prescriptions and he didn't get the antibiotic, he wasn't too happy, but went out again. Shortly afterwards, mom got a call from him (couldn't be good news when hubby calls from pharmacy). Evidently, they didn't get the prescription... mom vowed she gave them both in together and dad said he'd call back. He called back and said they did get the prescription, only they didn't fill it because they couldn't read the dr's instructions, and left a message for him to call them. Well, it was late enough in the day, so odds are the dr wouldn't have gotten the message until morning. Dad was not happy, and he called mom. Supposedly, no one at the pharm knew about this until dad was there for a little while, if they knew and told him up front, he would have understood the situation. Mom asked dad (who wasn't too thrilled about waiting at the drug store) to give her just 2 minutes, she called hospice and asked them if they could help. Hopsice suggested just getting the script filled so dad could come home, and they would continue to work on what the dosage would be as the prescription was filled and brought home, then mom could give Claire the meds with the proper dosage. They offered to call in and give them a dosage. Mom told them how much Claire weighed so they could figure out the dosage. Meanwhile, at the store, the person helping dad, after communicating Claire with her oxygen on... getting better soon!with hospice, decided her shift was over and started leaving. On her way out, she passed the buck to a pharm who refused to fill the prescription, since the instructions were not legible and the drs office hadn't called back... this caught dad's ear. Poor dad. Didn't say anything... just listened to the conversation between the two. The first pharm convinced the second that she had been working to get confirmation of the dosage, and filled the second shift pharm in.
Hospice called in an approximate dosage based on what she'd gotten last spring when she was at the hospice house, so the pharm would fill the prescription, and then the pharm called mom to say the dosage didn't seem right (as this strength was higher than in the past), so they wanted to call the nurse back (they didn't know she was at hospice) and needed the number, mom gave it to them. Finally, after a very long wait on dad's part, the prescription was filled. Hospice called mom back with the correct dosage, confirmed by the drs on-call nurse, and when dad got home, mom gave Claire her antibiotic... whew.
Dad was at the pharmacy a while and used his time wisely... he was 'hanging out' with the store manager giving him a nice long story about his evening... asking, 'am I expecting too much?'... the manager kindly agreed that he wasn't... and mentioned that customer service isn't high on the list of classes at pharmacy school.
Claire took her meds and drank another 2oz (26oz for the day)before snuggling with mom and falling asleep. Mom put her back in her bassinet and covered her with a blanket. Sweet dreams little one.

October 24

Chubby handsClaire didn't seem to ever go to sleep. Mom checked on her around 1am and she was still awake but being very good. Just breathing a little hard.
She seemed tired, mom fixed her another bottle of ped/fruit/barley and she drank 4oz and mom held her for a while while she slept in mom's arms, then mom moved her to the swing for a little while and watched her doze in and out. Eventually, mom put Claire between her and dad. Claire still has a nastly loose cough but no fever.
In the morning, Mom woke Claire for meds and called hospice to have a nurse come out and listen to her. Mom bathed Claire with the oven cranked up and the kitchen doors closed to keep th warmth in the kitchen. Mom took off Claire's cannula (oxygen) and Claire enjoyed her bath, it was the first in a couple days Claire had a Chubby girl!bath as mom didn't want her to catch a chill, but decided it was time to clean that baby up. After her bath, she finished off her 7oz bottle and started another 6oz, still no formula in her diet as mom is afraid it will congest her even more. The hospice nurse came over and confirmed that her lungs sounded gunky (they usually did anyway) but mom thought there was a little 'squeek' to her breathing. They took her O2 levels and she came in at low 90's/upper 80's without the cannula on. She didn't really know what to tell mom, and mom didn't know what to ask for, so they decided to put the O2 back on Claire and continue what she's doing until tomorrow when Claire's nurse could come see her, and Claire could see her doctor.
Claire was pretty miserable in the evening. Mom thought she might want some formula, so she offered her a shake with formula in it, but Claire only drank an oz of it... so mom gave her more of the pedialyte shake. Claire had 28 oz of fluids today, so Pedialyte, some ped shakes with fruit and barley. At least her appetite is good, and it seems to be soon after a decongestant.

October 23

Claire and her birdClaire was still sick today. That cold is really getting her down, she's been more fussy than usual (tho she typically isn't fussy, so that isn't saying too much). Mom stopped giving her formula and she is on a diet of ped/fruit/barley in her shakes. She loves them. First thing this morning, mom gave her about 4oz of bananas, straight from the jar, by spoon. She couldn't eat them fast enough. She did eat really well today, considering her 'under the weather' -ness.
Sitting up pretty!Mom spent much of the day feeding her and putting her in her swing (so she'd be upright) to sleep and Claire spent much of her day eating and sleeping. She was very congested and mom gave her decongestants every 6 hours to keep her head cleared and she continued to have a very loose, very loud cough, but keeping her food down until she got her decongestant around 10pm, and that made her bring up about 1/2 oz of food. Overall, she had about 22oz for the day. She does have a good appetite, so mom's hoping it is just a cold. Mom put her to bed between mom and dad so she could keep an eye on her as she was waking up with a cry and her breathing looked a little labored. She's got an O2 cannula on tonight.

October 22

Claire slept through the night in her bassinet and was a very good baby. She would wake up with her nasty cough, it is loud and loose sounding, and she'd cry like it hurt, maybe a sore throat.
She went to daycare and mom told her caregiver that Claire was coming down with a cold. There was a child at the daycare who was getting over a cold, and evidently it was 'going around'. Topped with Claire having a flu shotSnoozin the day away on Wednesday and an RSV (upper respiratory) shot on Thursday, it seemed she was bound to get some little thing. Mom is trying not to worry, just keeping Claire's tummy full and making sure she gets lots of rest.
Claire seems to breathing fine, but given that she has a cold, mom plans on keeping her on oxygen until she feels better. She called hospice to see if the nurse could come listen to her, but her nurse wasn't in today, and they said they could send another, but mom felt that another nurse wouldn't know what Claire typically sounds like (as she typically has a gunky sound in her lungs anyway), and though that if it is just a cold, it could wait until Monday, if it gets worse, then they could send out a nurse over the weekend. Claire had about 20oz today, so she's at least eating well.

October 21

Sleepy girl, just don't take her thumb out of her mouth!Claire was up around 4am, she wasn't making any noises, but mom woke up and checked on her. Knowing she would cry if she were hungry, or chew on her hands, she was just laying there with her eyes open looking around. So mom let her stay in her bed and went back to sleep.
In the morning, Claire was fast asleep, and mom wondered just how much sleep she really got, and if she often woke up like that and was a sweet baby, hanging out and going back to sleep on her own.
She was up for meds, then 4oz of shake with vitamins and fluoride, then another 4oz of shake before heading out to daycare. She will have Music Therapy this morning at daycare, since she missed it yesterday. She will have her RSV shot later today (dad will take her) and she will meet with hospice at the end of the day (mom will meet them at home so dad can run errands). Guess mom's busy Wednesdays are spilling over to busy Thursdays for Claire, but mom has lots of help. (Thank goodness!)

October 20

Claire had a good night's sleep and was up for meds and shake (first 4oz with vitamins - yuk!).
Claire started her day off with a bath, then off to the dr's office for her check up. She weighed in at about 12 1/2 lbs and mom thought with all the BMs lately that she'd lost some weight (a heckofa way to loose weight). The dr said she could get a flu shot, so she got the first half (they divide the shots into two when it is the child's first flu shot). Last year, her sibs got the shots, but this year, the family won't be getting shots, and Claire will still be very exposed between daycare, dr's visits, sib's exposure and therapies at the pediatric rehab center. She goes back in 4 weeks for her second shot (nurse only visit) and her appts will now be every 8 weeks instead of every 6 weeks. Goo Grrl!
After dr's visit, she was off to PT where she was on her tummy on the ball again... legs outstretched and the first time she came down on her feet, she stood! Of course, she was still leaning on the ball, but using her legs like she will need to when she learns to walk. Claire needs one of those big balls at home for playtime with mom. Ideas for Santa.
After PT, Claire was home and drinking another bottle. Then mom put her in her bassinet to see if she would sleep, but no luck. She didn't sleep all morning or all afternoon. Later, after the kids school was out, Mom and Dad went to meet with one of the kids' teachers, Claire slept through the visit. It was nice meeting with the teachers and hearing all good things. Mom and dad requested the meeting to kind of keep the lines of communication open, and see how to get/keep their child on track. It was very productive... and good things are in store.
After the meeting, mom and dad went to watch Claire's sister in her afterschool dance program. And then everyone went home for dinner. It was pizza night (as every Wednesday is) and a family friend brought over the pizza. After dinner, he watched baseball with dad and held and fed Claire.
Claire kept eating and eating, she had about 22oz for the day, and ended with about 12 of those oz in a 2hour period at night. Mom decided to just put her down, even tho she didn't seem too tired, because she wanted her little tummy to settle down and didn't want to see any of Claire's food for the second time. Claire eventually went to sleep, tho she really wanted to stay up for the entire game (7th game of the American League Playoff Series) Dad was cheering on Boston, and mom decided the game would go too long for her to watch, and she'd just get the score in the morning. Besides if Boston lost after all they'd been through, she didn't want to hear what dad had to say... it couldn't be good. Once Claire was settled in - half asleep as her eyes were getting heavy, around 10pm, mom followed right behind.

October 19

Claire was sleeping through the night.
She had a banner day as she drank 6oz of formula/ped in the morning, and at daycare she had another 10oz. At home, she polished off the bottle with another 2 1/2 oz in it, and then another 4oz of shake. Later in the evening she drank 5 more oz and fell asleep. That is roughly 27oz for the day... Go Claire!

October 18

Claire was up at 3am. She seemed like she could be hungry(hands in mouth), but before mom got her bottle ready, she had thrown up. Mom thinks she just had her hands in there too far. Dad cleaned up the bassinet while mom cleaned up Claire and offered her some shake. She didn't seem interested, but still seemed hungry and mom realized she was congested... probably just the thing that woke her up to begin with. Mom gave her a decongestant and held her for a while and she looked very tired, so mom put her back to bed.
In the morning, mom woke her for meds and breakfast. Mom gave her fluids to help with congestion and constipation, then off to daycare. Claire drank 4oz of formula with ped mixed in for added flavor.

October 17

Claire slept through the night.
Mom and Claire slept in a little longer than usual, and mom woke Claire for meds and bottle. Mom was planning on bathing Claire for church, but time got too short and Dad's cousins were still in town, so he opted to stay home with Claire. Good thing too, as he was able to give her some time and she drank 6oz with him. When mom got home it was a good time had by Claire as she finally got her bath, and she loved it!
Lately, Claire has had a blister looking sore on her heal. It is puzzling mom as the only thing Claire is close to that is 'hard' is her carseat. Mom put some neosporin and a bandaid on it and a sock.
She hung out at home all day, from boppy pillow, to someone holding her and back and forth. She took a nice nap after grandma arrived and wanted to play, but mom realized after a couple hours that Claire needed to wake up, and also that it was pretty warm, so she opened the windows and turned on the attic fan, and soon it was cool, and Claire was up. She had socks on and a one-sie outfit.
Claire took her meds in a timely manner and was asleep by 9:30pm, and mom followed her. It was a long, fun weekend. Claire drank about 18oz of shake today.

October 16

Claire slept through the night.
She was up early and mom was feeding her and getting her ready for a bath. She enjoyed a nice cool morning at her brother's flag football game, then home so mom could bake some yummy brownies, cookies and finish off the chilli for post game. It would likely be too late to have it then, but you can always reheat chilli!
In the afternoon, dad's cousins arrived for the game. Everyone had chilli and then off to the big game... number 7 vs number 6! After a terrific game, and getting home close to midnight, everyone was exhausted and ate sandwiches and crashed and burned, including Claire. She was up when mom got home and mom fed her more of her bottle and she fell asleep quickly in her bed. She had close to 20oz of shake today.

October 15

Pretty girl - Big eyesClaire slept through the night. She made a few noises, and at one time it sounded like she hit her 'cup' that the O2 comes through... she will do that sometimes if it is in her face... but when mom checked on her, she appeared sound asleep. Around 3am, a thunderstorm was passing through and woke mom up, but she had little trouble going back to sleep.
Claire's sibs are off today, and dad has been so gracious as to watch them. They are old enough that they can entertain themselves and he can get work done, so mom can get to work. Claire was up for her usual med and breakfast. Mom put her vitamins in her shake... they are nasty smelling and probably not too great tasting either, but she downed them quickly in 3oz of shake... mom as pleased. It was only the second time mom had given them to her, but it will be a morning ritual now. They have fluoride, in them to help Claire's 'tooth' grow strong... and of course, the additional teeth hiding just under the gums.
Claire was at daycare for a short while when mom had to come and get her for PT. Today, she played with a few toys... she gripped them and then kinda zoned out... the therapist said it looked like she was thinking about how the toy felt in her hands. She also layed her on a very large ball and straightened out her legs... Claire kept flexing her knees and hips,Happy Grrl! but eventually kept them straight long enough so the therapist could roll the ball around and Claire put her feet on the floor and stood there for a minute or two. Mom was so very fascinated!! It looked like Claire had all the 'tools' to stand, just needed more muscle tone. It was very cool for mom to see Claire stand as she continued to lay against the ball. The therapist also put Claire on her leg in a 90/90 position (sitting upright) and then leaned her head over her knees and toes... then lifted her up by her bum (about an inch or two) and let her come down with a bounce. The therapist telling her all the while how fun it was... and when she stopped, Claire looked at her and started to talk to her. Claire had a peculiar look on her face. The therapist looked at Claire and said, 'do you want me to continue? Is that why you are looking at me like that and talking?'... so she continued, only to have Claire use her own legs to lift bum up and the therapist guided her... and the therapist looked up with the biggest eyes!! She was amazed at what Claire had done and mom was too!
Mom took Claire back to daycare and showed Claire's caregiver how to help her 'bounce', and mom went back to work. Meanwhile, Grandma and Grandpa were comin into town for the big game!! Yeah!

October 14

Claire slept right through the night. She had a pretty good day today, probably close to 19 oz for the day. In the evening, mom got an email from the hospice nurse with the results from the med levels... she is about a 6, where normal is between 4 and 10, so Claire's in a good range and her meds won't have to be increased any time soon. Mom is very pleased, esp with the weight gain, to not have to increase the dosage is great.
Mom gave Claire a haircut today and a bath. The Claire Haire was getting a bit unruly, and mom took matters into her own hands. She thinks it looks pretty good and Claire thinks the jury is till out on that.
In the evening, Claire relaxed, had her bottle and hung out with mom doing exercises. Mom had her little legs doing bicycles and stretches, then her arms, even her hips and Claire was all smiles... she loves the stretches! Mom could see her little heart pounding and her breathing heavier, as if she had been running, so it was time for a little break from the stretches, and evidently, the cardio workout.
Claire was in bed by 9pm, mom gave her her meds early so everyone could get some much needed rest.

    Please keep Baby Luke Winston-Jones and his mom in your prayers. He has Trisomy 18 like Claire. Read more about him.
Keep Baby Charlotte Wyatt in your prayers too. She was, born weighing just one pound with serious heart and lung problems. The courts have ruled that she will be allowed to die in a case similar to Baby Luke's.
While these are very hard decisions for doctors and courts, nothing runs deeper than a mother's love for her child.
To send an email of support, you can visit Luke's page.
October 13

Snoozin... life is so good.Claire slept right through the night and not showing signs of seizures or fever. She is eating better and appears to be back to her old self. She's been a little more tired, but hopefully more and more food will help that.
She had a busy day, starting with PT and OT. She fell asleep after PT, so was useless during OT. She came home and was still asleep for Music Therapy, and after that, off to the eye dr appt.
The eye dr said she had a condition that makes her eyes 'jiggle' (not the technical term of course). Mom asked him to write it down and it will be posted. She said she wanted to look it up and the dr cautioned her that looking this up may be upsetting as it can be very serious, tho some people with it can get a driver's license and see fine. Mom said she was aware of misleading websites and would proceed with caution... mom doesn't feel like she needed to avoid looking it up and reminded him that she's had much worse news in the past and could handle whatever was on the Internet... she added that she found comfort on the Internet when she got Claire's initial prognosis before Claire was born and was able to see survivors and know that it didn't have to be the way the drs said it was. He understood.
After the dr appt, mom learned that Claire's hospice nurse was going to come out to the house, but since mom was only a few miles from the Hospice office, she popped in. It was nice seeing some of the folks there, while Claire was doing well, and when the nurse weighed Claire, she came in at 13lbs even!! A banner day!!

October 12

Claire had a great night and seems to be doing better. She ate 20 oz today, tho some was squirted into her mouth to 'kick start' her eating today.

October 11
19 months!

First tooth getting bigger... where's number two?Claire made a few noises during the night, but when mom when to check on her, she was fast asleep.
She was awake fairly early and didn't go back to sleep as her brother was leaning over and kissing her every time he would walk by her. She was warm this morning, about 101 degrees F rectally (that's 100 normally) and mom didn't think that warranted Tylenol. She soon became cool, so it may have just been that she was too warm in her bed.
She had very mild seizures throughout the morning (maybe one every 30 minutes from 8am until about 10:30 when she went down for her nap. Mom put her cannula on her to help her breath easier and gave her some Dimetapp to help her breathe and eat a little better. She didn't sound congested, but mom didn't want to take any chances that that was why she may not be eating well, and she hasn't had a decongestant in weeks... She drank about 4oz of shake... tho painfully slowly.
In the afternoon, after her nap, she woke up and had her meds... she was up around 2pm, and mom took the meds out of a new bottle, just in case it was a little stronger. If it is stronger, and she does well, she will likely start eating better and feeling better as a result. Her body temp seems to be nice and cool, so maybe her little bug has gone away. Mom is home with her all day to see that she eats well and keep an eye on that temp and the seizures...
She finished the day with about 17 oz of food.