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November 10  

Claire and Dad spent most of the night together until Claire finally fell asleep (with a little help from Advil) around 2:30am. Guess mom will have to work that Advil in a bit earlier in the evening.
With both hands in her mouth, or contentment with a bottle in her mouth she seems like she is teething (I know I've said that before!). Also, she isn't fussing during the day... she is actually a lot of fun. Mom thinks Claire is looking like she may be gaining a little weight too. (fingers crossed). The barely has really loosened things up, mom may have to add some rice to her diet again.
Mom woke Claire this morning for meds, breakfast, change of clothes as she sweated during the night (mom had the heat on in the house). Then after mom got some work in, they went off to daycare and then mom to work. Claire was wide awake in the morning, making faces at mom, like mom was a big nut... and how can any child have a mom who acts like that... mom was trying to get Claire to crack a smile.. but she wasn't crackin'!
Claire was up all night, even with the advil laced pedialyte. She was just so fussy, and mom was up with her all night. Fortunately, tomorrow is a day off from work, so mom will try to sneak in a nap.

November 9  

Claire slept all night. Mom and dad did too!
Claire went to church today, and mom noticed a bit of an apnea spell. Claire was drinking from her bottle, and stopped and just stared. Mom noticed she was getting a little 'dusky' around her mouth, so she started gently moving her arms until Claire 'came back' and started to 'pink up' again. It was about 5-10 seconds, but seems like 10 minutes to mom.
She's noticed this before, and it is subtle enough that no one else around can see it. But mom tends to stare at Claire a lot and notice little changes in her appearance and personality, and it is scary, but that's Claire... keeping mom on her toes! Claire still sleeps with her oxygen blowing in her crib. That gives mom some sanity during the night.
Claire fooled mom. She had her nice warm bath and wanted to go to sleep, so mom put her to bed, and she was trying to get both hands in her mouth. So mom picked her up again, fed her more formula and she fell asleep again... for about 10 minutes. Then dad came in and got her.

November 8  

Claire was up all night and all morning. Mom fed and held Claire until 5am. Claire wanted the bottle in her mouth the whole night (mom is thinking teeth again) and fussed if mom took it out (even when Claire appeared to be in a deep deep sleep). At 5am, mom felt Claire's dad had enough sleep, so she woke him and he took over. Mom was up again at 7am, fed Claire her breakfast, dad gave her meds and mom bathed her and wrapped her up all snuggly and Claire went to sleep, finally... and slept most of the day.
Everyone was exhausted.

She had another nice warm bath in the evening, 2 oz of pedialyte laced with infant's Advil, and about 3oz of barley/formula and she fell asleep around 10:30pm... she had about 10oz barley/formula all day.

November 7  

Claire was up until 1:30am with daddy. Guess she missed those nights staying up with him. She was rudely awakened by her mom this morning to go to daycare. Her day was busy and she had a pretty good one. She came home, had dinner, skipped her bath and went to sleep around 10pm, only to wake up at 10:30pm. Dad took care of her until 12:30am.

November 6  

Claire slept through the night last night. She slept quietly too, so mom had to get up and check on her. She woke up at 6am and had 4 1/5 oz of barley/formula mix in about 45 minutes and went with the other kids off to school. She really seems to be back to her ol' sweet self. Mom thanks the barely for that. Now it is time to focus on increasing weight and strength... maybe getting a trainer for her workouts. :o)
She went to bed after downing 7oz of barely/formula between 5pm and 10pm. The little tummy was so full. She was up again at 10:30 and dad couldn't understand why she wouldn't drink.

November 5  

Claire was up with Dad last night until about 1am. He was surprised to wake up and notice that she hadn't gotten up during the night. And that means mom slept well!
She stayed home with mom today, since she had a PT appt and Hospice. The PT worked on getting her back to straighten when she is laying down while keeping her head straight, so she made her a pillow from a child-size sock. This will be for her head to rest on and keep her chin forward resting close to her chest.
Mom is trying to get all her appts on one day, for some sanity.
During her busy day, she kept drinking and drinking. Mom put her down in the darkened livingroom and she finally took a nap around 5pm. Mom woke her around 7pm for meds, dinner and bath, and Claire zonked out again by 9pm. She was a tired bear.
The barely cereal seems to really be good for her system. She has had regular bms without any suppositories. It may also be the reason she isn't so fussy. She loves the flavor, it has a sweetness to it, yum. Mom skipped the spoon feeding tonight, she needs to invest in a new baby spoon. Dad hid all the old baby spoons... he's funny that way. :o)
Claire had nearly 12oz of barely/formula today and 2oz of Pedialyte.

November 4
34 weeks
 

Claire was up at 4am for a small feeding... she only drank an oz of formula, then wanted to go back to sleep. She felt warm and mom took her temp. It was 100... after a 1/2 hour, mom took it again and it was 100.5. When she was all done eating... mom noticed Claire was sweating, so she turned on the fan and loosened her covers and let her get some rest. Her temp was very cool when she got up in the morning for her meds.
She had about a Tbsp and 1/2 of cereal tonight with the spoon.

November 3  

Claire was awake most of the night. Mom didn't get much sleep, but did what she could. Still trying to get over her cold. Claire went to daycare this morning and slept a lot over there... of course.
Claire's friend found some Barely Cereal, and another friend sent some in the mail from her T18 baby, another Claire who passed away the week before Claire Baire was born. Claire J is truly missed by all of us, tho we never met her.
Claire is going to try to eat from a spoon tonight. Should be interesting. Rice and formula... loosely mixed. Then mom will see how she likes the barely cereal in her bottle. Mom has been giving her a suppository every other day, hopefully the barely will eliminate the need for that.
Claire ate about 1 Tbsp of barely/rice/formula cereal by spoon. Mom was so proud. The food went in, and the tongue pushed out a little bit and the rest seemed to disappear. After a few spoons, mom looked into the cup and most of it was gone. She was tempted to go get more, but didn't want to ruin a good thing and decided to clean up and get Claire her beloved bottle.
Claire had a couple of oz of barely/formula mix and went to sleep. Mom went to sleep too, around 8pm. Dad came and got Claire around 10:30 and she had another couple of oz before dozing off again.

November 2  

Claire had a snoozer of a day. The Advil may have taken a bit too long to wear off. Claire enjoyed spending time with friends in Georgia before heading back home in the evening.

November 1  

Claire watched college football most of the day with dad while mom tried to get some sleep after Claire's restless night. Tonight, Dad gave her some Advil diluted with Pedialyte. It went down well and no gagging. She slept well, up from 3:30 to 4:30am to drink 2oz of cereal/formula. Claire's friends in Georgia bought her a Boppy pillow, she now she has one of her very own, and will be returning the 'loaner' from the home society.

October 31  

Claire got decked out in her chili pepper costume and she was the hit of the ball! She went to a Halloween block party and hung out with Mom while dad and the kids went trick-or-treating around the neighborhood with friends riding on a golf cart. That's the way to go!
Claire's evening turned into a night of constant crying. Mom is still thinking teeth, and even attempted to give her some Advil, but Claire only gagged on it and gave mom a look like, 'what are you trying to do to me with that stuff!?'.

She had her weigh in today at the Pediatrician's office. She is 7lbs and 3oz (up 4oz) and is wearing size 0-3 months. Mom had to put away the preemie clothes a few months ago as Claire outgrew them.

October 29  

Claire pulled an all-nighter - pretty much... she was up until 4:30am with mom. Dad had her until 12:30am, while mom had a nice nap since 8pm. It wouldn't be so bad if she was just content to eat all night, or even play, but around 2:30am or so, she gets a bug to start crying, and nothing seems to soothe her. Finally, a bottle in her mouth will work, even if she doesn't drink it, and so mom sleeps with bottle prop-ed up. Claire's gums seem really swollen at night... perhaps she will get ALL her teeth in at once, and the family will finally get some sleep (hehehe).
Mom decided to send Claire to daycare with dad this morning, and go into work for a bit. Claire has her first physical therapist appointment today.
Mom still has her sore throat, and a stiff neck (gee I wonder why) to go with it.
Pictures are coming soon. Mom has finally fixed her smart-card reader problem.
Claire liked her physical therapy - somewhat - she at least stayed awake for it. The picture above is her afterwards.
Mom decided to turn the heat on, it was a bit chilly in the house last night. Claire had a few oz and went to sleep shortly after, around 4:30pm, and mom did too, until about 5:30pm, but Claire stayed asleep until 7:00pm, then had another couple oz and back to sleep again.

October 28
33 weeks
 

Claire rested pretty well last night with a bottle in her mouth the whole night. Mom was up every few hours changing out the formula, as Claire wasn't really drinking from it, just wanted it there, and mom was needing some rest, so she went along with it. Claire was up at 7am to eat (for real) and get her meds and play. She spent some of her morning trying to make mom act silly, as if Claire would laugh. Then she was working on tummy time, but fussingly-so. She has come down with a cold, but seemed to be handling it well during the morning. Mom woke up with a sore throat this morning. That is 'so' not fun. Claire drank about 12 oz today. Mom and Dad have been hunting around town for some Barely baby cereal. No luck so far. The barley should help with constipation, the rice cereal has been a bit 'binding'. Even 'super' Wal-mart doesn't carry it. The search continues. Until then, it's suppositories for Claire (yeah, yeah... too much information!).

October 27  

Claire had a busy day. Mom monitoring her closely to see that she was okay. She had an early morning bath, and then played a bit while mom tried reaching the dr office to set up the bloodwork and getting some work done.
Claire had an eye appt, and the dr said she wouldn't need glasses. She appeared to be tracking well with her eyes and tho her eyes appeared to 'jump' frequently (typically a sign of bad eyesight) he felt it was more a symptom of the trisomy than it was bad eyesight. She pretty much got a clean bill of health from the eye dr and will go back in 6 months.

The bloodwork came back and she wasn't fighting any infection, but her levels must be low because her ped said Claire needed an increased dosage of the seizure meds. Mom started the new dosage tonight. Claire had about 12oz, including some with rice cereal.

October 26  

Claire had a nice long weekend, visiting with family and friends. She had big fun, but it must have worn her out because around 7:00pm, she started having seizures again.
Hospice told mom that she could just call them and they would 'up' the seizure med dosage, so she called. They told her to go ahead and give her the regular dosage now and
they would continue to try to reach the dr office. The nurse was terrific!
Mom was expecting that she would have to play phone tag with dr's after hours staff, but the nurse handled all of that, she contacted the ped after-hours nurse, and eventually Claire's ped, she contacted the neurologist office and tried to contact Claire's hospice nurse (the one that visits her and calls about her frequently). Unfortunately, her phone was hit by the storm that came through that night and she was unreachable.
The bottom line was that the ped said to bring Claire in for bloodwork in the morning and they would check her med levels and test for blood cell counts (to see if she was fighting any infections, evidently that can bring on seizures too).
Claire's seizures quit about 30 minutes after she took her seizure meds. Mom was happy, but still slept with one eye open all night.
Seems ever day, Miss Claire becomes a bit more fragile and a bit more strong at the same time.
On Saturday, Claire had over 16 oz. On Sunday, she had about 9 oz of Pedialyte and another 10 of cereal/formula and formula.

October 24  

Claire had clinic at the Children's Home Society. She did pretty well, and mom was given some nice exercises to do with her, and a 'boppy' pillow. A big pillow shaped like a horse-shoe. Claire loves it and spent most of the day in it. It keeps her aligned straight, and leaves her little options of moving and sitting in odd 'poses'. Mom loves it, but knows that she needs tummy time and play time where she can move around too.

October 23  

She woke up around 2:30am and had 3oz with rice cereal, then another 2 1/2 oz of formula before drifting back to sleep at 4:00am. Mom wanted her to sleep in in the morning, since she needs to be well rested for the day, and had such a good feeding in the middle of the night, she probably needs the rest.

October 22  

By 3:30am, after drinking about 7oz off and on since midnight, mom decided she, mom, needed some rest (she had a 10am meeting in the morning at work). As Claire lay in her arms, staring around the room with a bottle in her mouth that she wasn't drinking much of, mom woke up dad. He was smart and went to bed at 10:30, so he had enough rest and was able to take over for mom.
Claire decided to finally go to sleep this morning at 5:30am, according to her daddy. The alarm clock goes off at 5:45am. :o)
She hasn't been eating well at her daycare, so mom is going to have to work with her this evening to get more food in her. She evidently has her days and nights mixed up. Mom has her thinking cap on again to work on that one! Mom teasingly asked Claire's caregiver to 'cry' in her ear if she looked tired and wanted to sleep... again, teasingly... mom is guessing it wouldn't make much difference to Claire anyway... hehehe... remember, Claire's hearing is in question.
She had a pretty good day at daycare, drinking 4oz, and then home sleeping most of the day. Mom worked really hard to keep her awake, and get her fed... but didn't want her too awake, so she fed her and gave her another suppository and played with her. Claire eventually had a big bowel movement, and went to sleep around 8:30pm after drinking about 3oz.
She woke up again, didn't want to miss that daddy time, around 10:30pm and drank 1oz and went back to sleep.

October 21
32 weeks
 

Claire's dad watched her until 2:30am, and she finally dozed off and he went to bed. Within about 10 minutes, she was up again, and her mom came in with a new warm bottle. She put Claire's socks on and soon Claire went to sleep until morning... around 3:30am.
Claire was woken early for her bath and bottle and to go to daycare. Mom dropped all the kids off this morning, giving dad a break, since he was just up at 2:30am, and she didn't have the heart to wake him again at 6am. It was a bit of a switch for mom, having the most sleep last night, and letting Claire's dad sleep in.
Claire, with socks still on, didn't drink too much in the morning... when mom took her to daycare, she told Claire's caregiver about the socks. Mom said, 'take them off when she needs to eat, and put them on when she needs to go back to sleep'... they both laughed... mom seems to put a little too much though into things where Claire is concerned.
Mom called the daycare and asked how Claire was doing, her caregiver said she only had one oz in the 3 hours she'd been there... mom was a little disappointed, and asked if she had her socks on... and she did... when mom called back in an hour, Claire had her socks off and drank another 4 oz. Too funny... Claire you keep us in stitches!!

Claire got home and layed on her tummy for a little while. She had a 7-month photo shoot today, but mom had to cancel. With work and Claire's sister's drs appt, there was just too much going on. We rescheduled for tomorrow.
Claire thought she might want to go to sleep after her bath this evening, but quickly changed her mind. She really wanted more attention from mom tonight...

October 20  

Claire woke up late this morning, and didn't drink too much going off to daycare. At daycare, she only had 1 oz in the 3-4 hours she was there. Mom wasn't too worried, she figured Claire was still trying to digest all the food she had the day before. Claire was sleepy much of the day, so when mom brought her home from daycare, she took off her socks and put her in her swing. Claire got her second wind and started eating - mom thinks it is all about the socks. She went to bed around 9pm and so did mom, but Claire got up at 11:30pm to hang out with dad for a while.

October 19  

Claire had banner day... yes she had a   B A N N E R   day!!
Claire drank 20 oz of formula today, and she had another 2 oz of cereal/formula mix. Mom is so proud of her, but must admit that she was eating around the clock... Mom is thinking that maybe the rice is expanding her tummy, but the formula never really filled it up (mom can dream a bit)... or that she just kept drinking, thinking that the next bottle would have some rice cereal in it... that's Claire, always thinking about the next bottle.
It was really cool, watching her drink and drink, and keeping track watching the little tick marks ( like |||| ) increase in numbers... mom is so proud of Claire... she is telling everyone about her banner day!

October 18  

Claire finally went to sleep around 1:30am. In the morning, dad woke up and got her out of bed. He went to change her diaper and noticed a blister on her back. It appeared to be where she had some lotion put on her from the hearing test, as it was on the nape of her neck and below. It was probably on her hair too. Mom gave her a nice bath in the morning, and put some ointment on it right after her bath. The nurse said to leave it open, so Claire drank 4 oz of formula and fell asleep on her tummy, and her back could get fresh air.
Claire had never had a reaction before and had a few hearing tests done, but this time they must have used a different lotion to attach the electrodes, or to clean up the paste used on them. Either way, mom and dad were caught way off guard, but know it will just be a matter of time until her shoulder is cleared up.

With all the constipation problems yesterday, mom held off on the bath, but probably shouldn't have. The bottom line, never believe any lotion on your child is safe. She had never shown any sensitivity to anything like this before... but that doesn't mean she isn't allergic.
After her nap, she woke up and guzzled another 4 oz later in the day.

October 17   At 12:30am, Dad decided mom had enough sleep, after all, she'd been sleeping since 9pm, so they tagged up and mom took over. Claire was fussing by then, and mom gave her some decongestant, fed her and rocked her. Finally mom dozed in and out, but Claire stayed awake in her arms, both laying on the bed, until finally around 4am, Mom decided Claire might actually be asleep (and not just faking - like waking up once mom puts her down).
Mom crawled back into bed, only to wake up at 6am so Claire could get up for her sleep deprivation (ok, stop laughing) for her hearing test at 9am. Dad was elected to get up, since he was looking at about 6 hours of sleep in a row, and his job was to keep her awake until 7:30am, so mom could get a little more of a nap before taking Claire in for her appointment.
The test went pretty well -- left ear this time. Claire cannot hear through her ear canal, but the bone test looked promising, so we are going to anxiously await the results from the audiologist, a very neat woman by the way.
By noon, Claire hadn't had much to drink, since she was sleeping most of the morning, but mom will be focusing on that (and her work) for the rest of the afternoon. Kids are out of school today, but being very quiet for mom to work.
She had 2 oz of formula and 3oz of cereal/formula mix. By 3:30 she had another 3oz of mix.
Claire was awake pretty much the whole afternoon crying. She appeared constipated, so mom called the dr office. After a couple hourse, she didn't get a call-back, so she called and finally was able to speak to the nurse who recommended glycerin suppositories, and mentioned using only half one.
That seemed to work... Claire was busy all night filling diapers and mom was busy changing them. The nurse also mentioned taking Claire off the cereal until she is 'flowing' a little better (okay, sometimes there's a little too much info here :o).
October 16  

Claire had a wonderful morning, after only getting up once to eat (3 oz in 30 minutes at 3am) she dozed back nicely and mom crawled back into bed.
Her day at daycare was nice... she was alert all day and just wanted to play.
Claire must love baseball, cause she didn't go to sleep at all during the game. Dad put her in her swing and she just hung out with him all night trying to pull those Red Sox through... but no luck.

October 15  

Claire had a wonderful morning, and an even better day at daycare. She played all day, stayed awake, but not fussy at all, just wanted to be part of the gang... She had a nice bath when she got home and went to sleep at 9pm as mom held her while she ate and watched tv.

October 14
31 weeks
  Claire woke up at 4:30am and drank 3 1/2oz before going back to sleep until 7:30am, when dad took her to daycare.
Mom picked her up for a morning ped cardiologist appt, where she weighed in at 7lbs 3oz (Claire likes their scales better than the ped's office). The dr said she still has her hole (teasingly) and to keep her on her meds... while he doesn't think she needs them (life or death), he thinks they will help her, so he wants to keep her on them, and at the same dosage, since her weight hasn't fluctuated much. Also, when she is much bigger, and the hole will seem much smaller, she will be off her heart meds. The hole could be completely gone by age of 6, but no reason why it would grow. Mom asked why the last tests showed that it grew from 3mm to 3.5mm, and the dr said that it likely didn't grow, but rather it was just the measurements being 'that much off'. He originally put her on the heart meds, not because the hole grew, but because he thought that it did, from hearing it, the murmur was much louder. And after the results showed it didn't (really) grow, well, he decided to keep her on the meds. One med keeps her lungs from getting fluids in them, too much blood flow from the hole into the wrong chamber. The other med keeps her heart from being fatigued. Mom knows he knows best, he is also a very dear friend of the family and the best in the business!
Claire went back to daycare, and mom back to work.
October 13   Claire was up again at 2am, sweating, mom fed her another oz and turned on her fan, before she dozed off again until morning. Mom woke Claire up at 9am for her breakfast, and she had a bath and drank 3oz in about 15 minutes. Then she rested for a bit while mom got some work done. Then off to daycare so mom could go into work for a while. Claire probably averaged 10-12oz/day of rice cereal and formula mix all weekend.
She had a nice warm bath with Lavendar baby soap and off to bed for a little while. Dad was up with her later, until around 11:30, when she went back to sleep.
October 12   Claire had a nice morning, tho saying goodbye to family and friends she did rest a bit before church. In church, she pretty much slept or looked like she was 'almost' asleep... it was very chilly there, but mom dressed her warmly... and good thing too, since we went to brunch afterwards and it was REALLY cold there, mom didn't have a blanket, but Claire was comfortably dressed and slept for most of the meal.
In the afternoon, she and mom took a nice long nap and got to bed relatively early in the evening too. Claire went to bed at 10pm, and then up again around midnight - dad fed her 3oz.
October 11
7 months old!!
  Claire had a pretty fun day. It was rainy, but in the evening it didn't matter much, she enjoyed having lots of family and friends over for a big party. Everyone wanted to hold her and aside from a little cat-nap in the evening, she was very alert and playful.
 
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