Claire's Journal -- Tenth Month
January 10   Claire slept through the night again. Probably still sleeping off the meds. She also slept off and on for most of the day, only waking up to eat... she ate really well, then back to sleep. She spent most of her time in her swing. She was such a good girl for her mommy, who was trying to get things ready for her daddy's birthday party. When it was time to party, she was awake the whole time. From about 7pm until midnight. Wide awake and looking around. She was passed around between only about 3 people, but many new people were able to meet her. That was neat.
Mom kept Claire's bassinet in Claire's mom and dad's room, aside from her recent problems, and previously unknown to Claire's dad, his two brothers were coming up (driving 6 hours) to see him for his birthday party as a big surprise (and a big surprise it was!), and they would be staying in Claire's room, so she would remain in her parent's room.
January 9   Claire slept through the night, but woke up very lethargic and not hungry in the least. Mom put Claire in the nursery, which was cool since it was closed off from the heat. Claire eventually became a bit more active, but not too hungry. Her face looked like her nose leaked out all over it. Not a pretty site. Looks like a cold is in the works. She got her bath and went to her clinic at the Children's Home Society.
Claire's hospice nurse was unable to see her yesterday, so she met us at the clinic and was very impressed with it. The Occupational Therapist has many nice things to say about Claire... but noticed her apnea/seizure spells... Claire had at least two of them.
Mom took her to get her blood work right after, and spoke to the ped nurse. Mom wondered about the current med Claire has, since it is likely that the new med was poured out of the same bottle the previous med was taken from, if so, and if the bottle was not full, how stong would the meds be that she has now...whereas before they were diluted... and what side effects would she have... sleepiness? Lack of hunger? All valid concerns. If they didn't think to shake it the first time, would they think to get a new bottle the second time and throw out the previous? How would they know what bottle the unshaken med was taken from? The bottles poured from are not like gallon-size (from what mom could tell)... and were other childen given this med without the shaking? If so, aside from the problems with the other children, would that make Claire EVEN STONGER? Okay Okay... new pharmacy!
Mom is a little saddened by the whole situation... the ped nurse said to get a new refill from a different pharmacy... good plan.
The ped nurse called tonight. She spoke with the pharmacy and told them of the episode with Claire. Her seizures resulting and requested a new refill from a new bottle (and get rid of the current bottle as it was likely not a proper mixture). They agreed, but mentioned that they only had the one bottle. To mom, that proves her theory about the new med being too strong. It may also explain why Claire had been so tired up until about 4:30pm today. She finally had a nice meal and wants to play.
They said they would call around and get a new prescription for Claire and have it ready by 6:30pm (her next dose is at 7pm).
Mom and dad hope this bottle will put Claire back to her old self.
Claire's daddy turns 40 this weekend. Mom is planning a small party for him... that is cheering her up at least. She sure loves parties.
January 8   Mom woke Claire up for her meds. She watched Claire for a while and noticed her eyes darting. She could have been dreaming, but mom isn't so sure. After meds, mom gave her some pedialyte and Claire went back to sleep.
IS THIS A SMILE???The hospice nurse called to say she would file a report and she would call the pharmacy about the problem with Claire's meds. She said she would come by today to see Claire and maybe bring a baby scale to save us a weigh in trip to the drs office. She was very upset about the situation, as was Claire's pediatrician. The peds office called this morning to schedule blood work to see if her seizure med levels are correct. It's been busy around here this morning. Mom is working from home today show she can keep Claire close to monitor her.
Claire had some apnea-looking spells today. She fell asleep around 8pm in her swing after her dinner. Mom moved the bassinet so Claire could sleep in mom's room. Mom moved Claire to her bed, warmed with the heating pad, around 9pm, and Claire stayed asleep.
January 7   LOOK AT ME!!Claire had seizures last night... one was particularly bad.
She was up until 2am with what seemed like a sleep apnea. She would just dose off, only to wake up in minutes, and crying. After she fell asleep, mom stayed up for another couple hours just listening to her breathe.
This morning, mom remembered that her meds weren't looking the 'same' as they had before. She recently got a new dosage from the pharmacy (Claire had been on it for a couple days), the new med was pretty transparent, as the usual dosages are, before they are shaken... then they turn milky.... the meds in this bottle, when shaken, stayed transparent.
It took mom a while to catch on, so she took it back and asked the pharmacist about it. They said, 'Oh sorry, we must have forgotten to shake it before pouring your dosage', and gave mom a new bottle -- milky colored!.. with an apology. Suppose everyone is human. Mom didn't mention MUSIC THERAPYClaire's seizures, dad was surprised that she didn't.
Claire's mom is just hoping that this was the cause - only because it seems easily remedied. Because of this, it was like she was off her meds for a few days making her levels of medicine probably dive down until her little body gave into them. Mom informed her ped and they said give her another dose immediately, and delay her evening dosage by 3 hours. She was busy with various appointments throughout the day including Early Intervention and Music Therapy (see pix of each). Little Peanut is resting comfortably this afternoon.
She had a nice bath and a nice big dinner. She went to sleep around 11pm and was up only for seconds a few times during the night. Mom gave her a pacifier for a couple of those times and she seemed okay with that and went back to sleep next to her mom.
January 6
42 weeks		   MUSIC THERAPYBy 1am, it seemed Claire never quite wanted to go to bed ...mom got up with her so dad could go to bed. Claire and her mom were both up until 4am, when mom finally got some rest. Everytime mom would put her in her bed, she would fuss. Pick her up, and she would have such a sad, pitiful look on her face. Early in the evening Claire's mom gave her some Mylacon for gas, and around 2am gave her some Advil in case she was teething. Nothing seemed to help. Mom would just hold her and squeeze her. She fed Claire, rocked her, tried the swing (but Red Dog started picking a fight with Claire, so that wasn't such a good idea).
Fed her more, and she drank more, lots more, and finally went to sleep. Mom slept in Claire's room so she wouldn't wake Claire's daddy by getting up and down to check on why Peanut wasn't happy.
Today, Claire got her shot for Respiratory Syncytial Virus (RSV). She weighed in at a whopping 8lbs and 6oz!! That is up 9oz from her last weigh in on Dec 16th.
January 5   Claire decided to go back to her old ways. She was up until 3am. Mom was up til midnight watching the end of the BCS Championship game, so she stayed up with Claire for the duration of the morning. Finally, it took a nice warm Claire-shake to get her to go to sleep.
She went to daycare for the first time in 2 weeks. Didn't sleep too much and when she got home it was all the family could do to keep her awake. She started sweet potatoes tonight. Mom put them in her milkshake (no bananas in it). Then around 9pm, when mom wanted her to go to sleep, she went willingly, but was fussing around 9:30. Mom fed her more and put her back down, and 15 min later, she was up again. Dad took over at 10pm and let mom get some rest.
January 4  
PONDERING THE MEANING OF LIFE.
Black and White

Claire seems to be in some kind of wonderful routine these days. She is eating really well, lots of shakes and sleeping for longer stretches and waking for long periods of time too! Mom feels it is possible that she could have gained 1/2 lb or more over the holidays.
Today she got up and went to church, she was held the whole time by her cousin who was thrilled to get that much uninterrupted Claire-time.
Mom had forgotten Claire's bottle with milk, and took only the bottle with a few drops of pedialyte she was finishing up from the night, but fortunately, the formula folks make Isomil Advanced in little 8-oz cans, ready-to-feed, and mom had one tucked away in Claire's diaper bag.
When she got home, she was asleep, so she layed down in the playpen mom previously set up in the family room. She slept for a while while mom and big sister took naps, then up to eat more food.
Later she had her bath and tried to eat more, but it came back up. She seems to do this a lot in the evenings... as if she is just a little piggy and eating more than her tummy can hold. As Grandpa says, 'her little overflow valve kicks in', and some of it comes back up. After her little spew, she falls asleep on mom's chest and then mom puts her to bed. Tonight, she went to bed before 9pm... but up again shortly afterwards for daddy time.
Mom likes this routine, except for the overflow part... but she will work on that.
January 3   Tonight mom put Claire in her swing and I think Claire gave a new meaning to the word 'swing'. She spent a good 15 minutes 'swinging' at Yellow Kitty, who hangs next to Red Dog. Mom got some really good video of her. She was so active and really seemed to be enjoying herself. The family was quite amused watching her.
January 1  

OOOOOH OOH OOOOOHHH!The family didn't get home until sometime after 1am. Claire's brother fell asleep in the car on the way home from friends home, but her sister was WIDE awake and ready to play even more.
Claire wanted to watch NYE in all time zones, so she was awake pretty much there rest of the morning and didn't want to miss a thing. So around 5am, she decided to go to sleep. Mom really appreciated hearing Claire's snoring when she finally was able to get some shut eye.
Mom was also able to get all the kids to bed during the day around 1pm, and took a nice 3 hour nap herself. Dad was impressed, as he came home from looking at homes for a client, and the kids were all in bed.

Bowl game watching is certainly the theme today. Mom is planning fajitas for dinner, and yummy brownies(coconut, chocolate chips, walnuts topped with toffee brickle) to finish off the New Year feast. Claire was practicing her FSU 'chop', but couldn't quite stay awake for the game, she knew it wouldn't be good.
Claire was up around 2 or 3pm, dad gave her another bottle and she guzzled it down. She had about 13 oz of Claire-Baire Banana Shake by the time mom got up from her nap at 4pm.

December 31
(41+ weeks)		  

Claire was up for a long while with her daddy, around 2am, they went to bed, but she was up around 2:30 for a few sips of Pedialyte, then back to sleep.
She woke up around 9am and had her meds. She had hospice come to visit and music therapy, enjoyed by the hospice ladies and Claire's entire family. Claire had several promising reactions to the music... she was soothed by much of it as they put her hand against the guitar, and later, her feet too. Mom discussed the possibility of the hospice nurse bringing a scale to weigh Claire at her home, so she wouldn't need to make the trip to the pediatrician's office for the weigh-ins and be exposed to bugs during the height of cold and flu season. They seemed receptive to the idea... just not sure if the Ped will accept the weigh in for her charts, he is so easy-going that it likely won't be a problem.Claire couldn't wait to go celebrate NYE with friends tonight, and was trying to rest up in the afternoon.
What a wonderful night the family had, sharing fun times with friends. They have a 4 year old with lots of dress up clothes, so Claire's sister was in heaven playing with those, not to mention all the Barbies. The kids had fun playing in a wonderful play room, while mom, dad and Claire were watching football and ball dropping and ringing in the new year. They are so grateful to share this time with Claire and build wonderful memories. She just wanted a bottle in her mouth constantly, and mom obliged with many cuddles and kisses on the forehead from many friends at midnight. She was also stayed wide-awake all evening, ever since her long, early morning nap lasting until about 1pm. Can you say, "don't want to miss a good party!!"
December 29  

Claire is finally home from her Christmas Tour. It was a lot of fun and Claire did exceptionally well driving all over the state. She also got up only once each night... had a few sips of Pedialyte, and then back to sleep. What a really good baby she has been!
It was a terrific Christmas for everyone! Claire received lots of new clothes and a red Clifford stuffed dog. It won't replace Red Dog, but she loves it all the same. She also got a music box and 3 new outfits to choose from for the bowl game on New Years Day! Her brother and sister had a nice Christmas too and enjoyed seeing most of their cousins, They missed their older cousins who probably headed north, but were kept busy anyway. Claire met an aunt she hadn't seen yet, and gained a new one as her uncle is now engaged.
The family had their Christmas with Claire and were delighted. Grandma was so happy to have a baby at Christmas; it always adds something when you can celebrate with children!
Claire seems to be gaining weight. Mom will need to set up an appointment soon to have her weighed. Perhaps sometime in the new year she will have a weigh in and she will get a hearing aid.... just need to get through the rest of the holidays.

December 19  

Mom took over with a new bottle around 2am... Claire dozed in and out, but really didn't get back to sleep until around 4am. It was a long night.
Everyone was up early, last day of school until next year. Holiday plays to practice, presents to wrap, so much to do. And Claire got ready for daycare, reminding mom not to forget the gift for her teacher too.
December 18  

Mom woke up at 4am, when Claire's big sister decided she wanted to sleep with mom and dad. Dad checked in on Claire then, and she was still snoozin away!
Claire slept through the night. So did mom! And mom felt great this morning! Claire didn't get up until 8am -- and hungry! She had her meds, drank 4oz of Claire-Baire-Banana-Shake and dad swept her off to daycare.
Claire did well at daycare, no naps, so mom thought she might have another good night.
In the evening, the kids put on their 'goin to meet Santa' clothes after baths and dinner out, they went off to the mall in search of the Big Guy. Claire's big brother had little interest in Santa... her big sister was full of excitement, and for the first time ever, sat on Santa's lap! Claire had a moment alone with the jolly fellow and talked his ears off.
Then back home and after cookies and milk, the kids went to bed... Claire included, only Claire was up again in a couple hours. Dad fed her a bit, but she wanted more.
December 17   Claire was up literally every 2 hours. Crying because she was just so darn hungry. As soon as the bottle when in her mouth, she couldn't drink fast enough. It was very worthwhile for mom to get up to see Claire so interested in food. Claire really loves those Claire-Baire-Banana-Shakes that mom makes for her. They have Isomil (soy formula), barley cereal, bananas or rice/banana cereal and sometimes pears or prunes mixed in. She just chug-a-lugs them. Claire went to bed at 10pm after her bath and full tummy, and then was up again at 12am, 2am, 4am and then at 6am with dad. Each time she ate for about 15-20 minutes until she fell asleep... and mom tended to fall asleep with her, holding Claire and the bottle propped up over mom's shoulder... they would fall asleep together and mom would wake up and put Claire back in her bassinet... for another hour or so.
Mom woke up very congested and her throat was sore... not good... so she took a mega-dose of Vitamin C and a big-fat vitamin too. She also took some of Claire's decongestant, as it was the only one in the house with pseudoephedrine AND an antihistamine... it was over-the-counter children's Dimetapp... grape flavored too... yum! No wonder Claire loves it so.
Claire stayed home again... this time it was because of her many appointments. First, she had early intervention come to the house to check in on her. Afterwards, she got word that Music Therapy (provided by Hospice) would be unable to visit, but the wonderful ladies from Hospice did come by for a visit. Mom ordered pizza in the evening, as dad needed to run out and sing in 30-degree weather. Claire was playing alot in the evening and wanted to eat eat eat, as mom had turned the heat down earlier (making the house cooler).
In the evening, her big brother was making his Christmas list and added a few things on the bottom for Claire. Not really knowing what she would want, he included a red toy, he knows how much she adores Red Dog, and a musical toy... she is calmed by music. Also a new outfit for her to watch the New Years Day Orange Bowl game in!
Soon Claire will be making her whirlwind tour of 4 cities in 5 days and visiting with cousins and aunts she hasn't met before for the holidays. As a result, she could be off-line for a few days. But not to worry, as she will be sure to have her journal updated with all her busy holiday fun and pictures.
Later in the evening, mom turned the heat back up, hoping the house would warm up in time for Claire's bedtime... it warmed up a bit sooner, Claire was snoozin before her bath-time, so mom put her to bed at 8pm. She was snoring so loudly in the monitor, that when mom went to bed at 8:30, she could hardly sleep.
Thinking Claire would be up at 10:30pm that evening, mom got to bed early and was hoping to catch a few hours of sleep. HEYYYYY.....WHAT HAVE WE GOT HERE??!
December 16
39 weeks		  

At Claire's 1am feeding mom noticed she had a little fever. I was 101.6. Mom gave her some Advil and Pedialyte and they waited together for the fever to come down and Claire to go back to sleep. Around 4am, it was down to 99 degrees and they both got some much-needed rest.
Dad took her to her 9-month dr appt today and she was up 2 more oz from last week - weighing in at a bit 7lbs 13oz!
Claire stayed home with dad today, due to her fever last night.
December 12  

Claire had a rough day. She was up most of the night and slept all morning, not wanting to wake up for meds or eating. But she took them. At her daycare, she cried much of the time and drank only 5 oz of formula. At home, more sleeping and mom was able to get her to drink some pedialyte and 2oz of cereal mix. After a warm bath, which she tried to sleep through, mom put her to bed at 10:30pm. There will be good days and bad days. Mom decided if Claire wakes up hungry at night, it would be welcomed. Mom took a nap when she got home from work this evening, so she's ready for Claire to get up at night. Right now, it is looking like she is just plain exhausted... maybe fighting the beginning of a cold. Mom turned her oxygen up a bit more, so she can save her energy for growing tonight while she sleeps. Guess it is tough being 9 months old.
December 11
9 months old		  

Claire had a nice day... she was able to get to daycare early and play play play. Then in the evening, she had a wonderful babysitter who brought presents including ornaments to decorate and celebrated Claire's birthday with her brother and sister. It was big fun had by all!
 
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