Claire's Journal -- Fifteenth Month
June 10
11lbs 2oz

Claire was awakened to a hurried mom. She had slept through the night, and with no Advil. Claire had an 8am dr appointment and mom had a 10am meeting.
Waiting in the dr office, Claire drank 5oz of shake, and the wait wasn't very long at all, she was just very hungry. Mom and the dr discussed taking Claire to a children's special needs hospital in the state to see if the specialists would evaluate Claire and give mom and Claire's dr some input about her care. Mom was okay with the idea, but it will take months to get that put through.
"Speak no evil"Claire weighed in at 11lbs 2oz at her dr's office. Mom was very pleased! Again, up almost a pound from her last weigh in! Her dr increased her anti-seizure meds by the smallest possible dosage, since she had such a nice weight gain. Mom told Claire's dr about the prescription and how they wouldn't fill it, but would the next day... and how odd she found that. He said he would write a new prescription with the new dosage and it should last her long enough. Mom agreed that the increase in the prescription (the last increase) wasn't on the bottle, so they were basing amounts by the previous dosage... not that the increase was that much, but it could help mom keep a little more 'on-hand' for emergencies, or just long trips out of town.
When Claire's dr went to listen to her heart, she moved her head and looked right at him. He was caught off guard, as he said, 'she seems to be looking at me'. Mom said she was, and that she does that often. When mom comes into a room, Claire follows her around with her eyes, even if she has to move her head to see mom... and her eyes watch mom as if to say, 'where's my next bottle'. Mom also told Claire's dr that she had video of Claire raising her arms and swatting her toys in her swing. His mouth nearly dropped. He knows Claire as well as anyone, but even he doesn't know everything she is capable of.
Claire and her NICU nurse, reunited once again!Mom took her to daycare with pears and squash. She loves both.
After work, mom picked up the kids and home for quick baths as they were expected at the bowling alley at 6pm for a charity bowling event.
When they arrived, there was no air conditioning, so mom decided they would not be staying for long, and after about an hour, mom, Claire and Claire's sister went home, where it was very cool. After a Barney video, Claire and her sister were off to bed. Claire drank about 7oz of formula (with about a tsp of bananas for flavor) and mom thought it probably wouldn't be enough to hold her through the night, but felt she'd had a lot of solid food lately and wanted some fluids in her. She also hasn't had a BM in a few days. Claire was in bed by 9pm. The boys, Claire's dad and brother, hadn't yet arrived home, but mom went to bed anyway... the house was so dark, cool and quiet.

June 9  

Claire and her NICU nurse, enjoying the little Peanut!Claire had a very relaxing day. She drank 8oz in the morning of shake with (1 Tbsp of bananas) after her bath. She had company at 10am, the nurse who cared for her in NICU and hadn't seen her since her last hospital visit. It was so nice visiting with her, mom really enjoyed it, she is a very sweet person! After her visit, she had a nice nap, woke up for some sweet potatoes, and back to nap again, which was great for mom to work at home. Unfortunately, she didn't want to wake up for MT today, so the therapist said she would come back next week. Claire eventually downed another 7oz of sweet potatoes (yum) with enough formula to make them flow through her bottle (mom thinks it is much easier, and cleaner, for her to eat that way, tho she sometimes gives her food by spoon).
Mom picked up Claire's prescription for anti-seizure meds.
Claire and her Hospice NurseClaire's hospice nurse came by with her scale. Claire weighed in at 11lbs, 4oz!!! Mom had teased dad earlier that she thought she would be over 11lbs, but mom was just being optimistic... and Claire must have taken her seriously!
At night, Claire drank another 6oz and went to sleep in her bassinet. Mom put her down while she was still awake, she let out a little cry so mom gave her some Mylacon for gas. The little peanut was tired, as mom kept her up since 5pm, and she went to bed at 10pm... with a nice full tummy!
Claire probably had about 25oz of shake during the entire day.

June 8  

Claire was well rested, as was her mom.
They were up early and off to daycare and to work. Mom also dropped off Claire's sibs at summer camp.
During the evening, mom went to pick up Claire's meds. She was unable to get them on her insurance as she had picked up a prescription on the 17th of last month, and the insurance thought it was too soon (they give mom one month's supply). Mom was a little upset, what if she wanted extra for some emergency, like a hurricane (not so far fetched). However, the pharm said that she could come back tomorrow to pick up the prescription, and that it would be covered then. He also said mom could pick it up today, but pay full price (not a bad price really) and be reimbursed for the difference tomorrow... mom thought that was odd, if they would reimburse her, why not give her that price today? She will need to ask the dr to help rectify that situation.
Claire drank so well at daycare, mom was a little concerned when she was fussing in the evening that she could have an upset tummy, so mom gave her some Mylacon for gas, a little early. That didn't seem to work, and Claire continued with her fussiness, like maybe teeth, so just before she went to bed, mom gave her some Infant's Advil, and Claire went to sleep soon afterwards.

June 7  

Claire was up until 3am. Nothing made her happy. At times she was quietly looking around the room, but she was drooling a lot and generally not very content. Around 12:30am, mom gave her some Infant's Advil. That usually helps her to sleep well. She drank about 3oz of applesauce and formula, and at the end of that, was disinterested in food. Dad did the best he could, and by then, put her in her bassinet and mom took over... hoping she would settle down, but only fussed a little more. Mom was up with her and tried letting Claire sleep on her chest, but she was very wiggly and didn't seem to be able to get comfortable. Mom put her in her boppy, and she seemed more content, but not going to sleep and almost gagging herself with her hands in her mouth. Mom gave her some Anbesol for her gums, hoping that would settle her down a bit, and the look on Claire's face was something like "what the heck did you just put in my mouth!" Claire was not pleased.
Later, mom tried the swing, and by that time, she realized the Advil wasn't working, so she gave her another dose. Mom only gives Claire very small doses, and after 3 hours, mom felt it was probably okay to give her more, since she was still very uncomfortable and had such a small dose. Also, after so long, mom decided it was feeding time again. Dad said, 'do you think she's going to eat', implying that she wouldn't eat for him, but mom said that was HOURS ago, and she was probably hungry. Claire drank about 2oz, and then finally decided she was tired.
The alarm went off at 6am.
The Claire alarm that is. She seemed hungry, so Dad fixed her a bottle of applesauce shake, while mom gave her meds and changed her... a quick sponge bath too to start off the day. By the time she was ready for daycare, she drank 6-7 oz of her shake, tho she had a little bit of gagging... dad said it looked like she had a 'hair ball'... poor Claire, she can't seem to catch a break, even from her own dad.
Mom called in a prescription for Claire's meds as she was running a little low. The prescription should be ready tomorrow for pick up.
Mom took the Baire to daycare and dropped the other children off at summer camp. Mom took the giant caterpillars too, fortunately the camp wanted them as Claire's big sister was studying butterflies this week! Mom didn't say she was going to 'squish' them if they didn't want them (that would have been a lot of squishing!), but then again, she could have let them go somewhere far from home. Mom did say that she was NOT going to keep them, and Claire's sister chimed it, 'because they poop a lot'. Mom agreed, they did poop a lot.
Speaking of that, mom gave Claire a suppository after her bath... big BMs and Claire was a happy camper for the rest of the night, and into the morning, sleeping like a real champ!

June 6  

Claire was up at 7:30am, then again at 10am, mom woke her for Church and Claire was dressed in her best duds. She slept through church, as a good baby, and dad held her the entire time.
She spent a little bit of time outside, mom had the porch ceiling fan on, and that kept it a little cool, and they entertained Claire's big sister who was blowing bubbles. Mom noticed her tomato plant was half eaten and she and Claire's sister decided to investigate while Claire hung out in her swing on the porch.
Just as mom suspected, caterpillars (The tomato hornworm). Not just worms, but caterpillars the size of a small hamster! They were big! (okay, some exaggeration there, but they were about 4 inches long and round as a dime). They were big, fat and green and had little horns. There were about 6 of them and they pooped all over the plants and onto the concrete. Mom showed them to Dad and he was amazed. They thought they were going to grow large tomatoes, not large caterpillars. Mom teased Claire's brother that they weren't going to be butterflies, but rather they were going to be small birds!... okay, you get the idea, they were big. Mom jarred them all up for summer camp the next day... they seemed much too large(and beautiful) to squish. Mom wasn't going to keep them because they were very messy and didn't wear diapers - she didn't need anything else to clean up after that was certain, and she didn't have enough tomato plant leaves left to feed them.
Claire had a few seizures today. Mom may have to address it with the dr, or maybe Claire just needs keep her food down more consistently. She'd been throwing up a bit lately.
Claire had a nice evening. Dad put up a surround sound system that he got a really good deal on and the family watched a couple of movies, Miracle and Brother Bear... they had watched Sea Biscuit the day before... a real good weekend for motivational movies. Claire slept through most of it on a pillowcase, under a cloth diaper, on the couch under a ceiling fan... she was very content, but mom decided around 6:30pm that the peanut needed to get up... she pulled the cloth diaper off her, and she slowly woke up as the family ate dinner.
Mom fed her and put her down around 10:30pm. By 11pm, she was fussing... mom wasn't sure why, but thought it was constipation... so she fed Claire pedialyte and juicy juice, and then took her temp, hoping it would help her out a little. Her temp was 100 (that is 99 orally)... so she was a little warm.

June 5  

Claire had a fairly typical day. She drank, slept, drank, slept. Mom and dad tried to clean up the house some, but with no luck, too much furniture these days and it needs to be moved around and some needs to be go.
Claire didn't drink really well, and threw up some, but mom guesses she will have a day or two every once in a while when she doesn't get all the calories mom would like her to have, and let Claire slide.
She went to bed at 10:30pm, and slept like a champ.

June 4  

Not quite the gummy grin mom was waiting for, but it will do!Mom woke Claire up early to get her ready for daycare. Claire drank 3oz after her meds and mom whisked her off along with her sister who was going to summer camp.
At daycare, Claire drank another 3 1/2oz, then took her nap just before noon. She had about 10 oz total at daycare.
At home, she had a quiet evening, totaling about 23 oz for the day.

June 3  

Claire in sleep mode.Claire was up around 5:30am with a fuss, but by the time mom fixed her bottle, she had gone back to sleep, and so did mom... for a little while at least.
When mom later woke Claire up, she drank about 3oz of shake, and mom had to get ready for work and get Claire's big sister ready for camp. It was a crazy morning as dad had already left to take Claire's brother to his basketball camp, then do some shopping... but mom did the best she could to get the girls out of the house at a reasonable time and get everyone to their destinations! This new summer routine will take some getting used to.
Claire had a good day at daycare drinking another 10oz and at night having a little nap during the family's dinner, a nice bath afterwards and totaling about 23 oz today.
At night, she was fussy, even tho she had a big dinner, and her hand was in her mouth with drool. Mom offered her more to eat, but she wasn't interested, so mom gave her a small dose of Infant's Advil, and Claire soon fell asleep... around 10:30pm

June 2  

Claire in relax mode (notice left hand open).Claire was up at 4:30am for breakfast. She drank well and mom swept her off to take her big sister to summer camp.
She drank well all day and had her visitors. She also took a long nap late in the day.
In the evening, she went to bed at 10pm, but was back up at 11:30pm very fussy. Mom didn't think she was hungry, as she drank about 12 oz just before bed, but had to offer her a bottle. Claire refused it. Mom gave her a decongestant and cuddled with her, but Claire was still very upset. Mom noticed her hands in her mouth and drool all over, so she gave her some Infant Advil and put some Anbesol on her bottom gums. Claire soon calmed down and fell asleep before midnight.
Claire had about 28oz today of shake.

June 1  

Half smile.Claire didn't go back to sleep, and she was up all night, sleeping only in (maybe) 30 minute increments.
Mom fed her each time she cried and dad took over at 3am until 5am, then mom took over again with another bottle. All in all, she had about 13oz throughout the night (4 of that was pedialyte, the rest was shake). Mom gave her decongestant and mylacon (for gas) hoping it would help her sleep, but neither worked. After a seemingly full tummy, she would rest for only minutes before waking up, so mom ruled out hunger as well and finally decided it was lack of BMs.
In the morning, after meds, mom gave her a suppository and waited and waited... nothing. So off to daycare (after Claire fell asleep in her swing). She was not going to wake up for anyone or anything; the little peanut was so very tired. At her daycare, finally, a big BM... Mom was proud! Hopefully this BM will mean a nice restful night for mom and dad... and Claire!
Claire drank about 31oz today of shake and Pedialyte (4oz).

May 31
Memorial Day

Yawn!Claire was up at 2am, had a shake and then back to bed. Mom too! Yeah!
The family spent the morning packing up and the kids did some swimming. On the way home, all three kids went to sleep; it was an exhausting weekend, but a lot of fun!
At home, Claire had an early bath and drank about 13oz of shake in about 2 hours. She went to bed early, around 7:30pm. Mom was so excited as her baby was in bed early and she was back in her own bed. But Claire was back awake for her meds at 10pm. After that, she was up again at midnight with a loud cry, mom thought she was hungry and fed her. She drank a few oz and seemed to want to go back to sleep... but didn't.

May 30  

Claire and her auntie!Claire was up at 1am and didn't go back to sleep until 5am. It was exhausting for mom and dad. Mom was exhausted by morning, but up with the kids by 9am and down to the beach to make a sand castle and visit with friends. Claire stayed in the room with her daddy and later with her uncle. Mom was able to sneak in an hour of nap during the day as Claire and her sister took their naps. The day was full of visitors as Claire stayed inside the room (it was a very hot day) and had many visitors come in to see her often. Her daddy, grandpa and uncle were with her most of the morning as there was NCAA softball and ACC baseball games on. Afterwards, mom took over, with aunts, uncles and cousins filling in often. Claire slept for a small portion of that time, and was full of big smiles for everyone throughout the day.
Late in the day, she went out by the pool to visit and enjoy the fresh air and cool breezes. She enjoyed listening to her daddy entertain with his guitar and soothing voice as she drank her dinner shake.
She went to bed around 10pm.

May 29  

Claire and her uncle!Claire was up once during the night and mom was so proud. Her first night away and she slept like a champ!
Mom was up with the kids and down to the beach by 8am. Claire was down on the beach all morning until about 11am, but she was well protected from the sun and got only a little color, which she could use. Mom took her and her sister up to the room and fixed lunch, cleaned em up and put them to bed. Claire's aunt wanted to play with Claire as she was only visiting for the day and so mom opted to let Claire out of her nap (as she slept a lot on the beach during the morning). Dad golfed in the morning and back by afternoon to help watch Claire while mom napped.
Mom even got a 3-hour nap in, as Claire's sister took a nap, and Mom's sister watched Claire.
After nap, mom gave Claire a sponge bath and put her in a cute outfit and fixed a yummy shake. Claire drank pretty well during the day, and was a little hungry after her bath. All the kids were in bed by 10pm, as vacations know no bedtime.

May 28  

Claire was fired up today, as today starts a nice long weekend with a trip to the beach! Yes, the family was going to the beach until Monday and certainly that is one of Claire's favorite places. This trip includes Claire's aunts, uncles, cousins and lots of friends too!
Claire drank for most of the trip down, it was about 3 1/2 hours, and her brother and sister slept most of the way.
When the family arrived, the kids went swimming and mom and dad bonded with family and friends as they watched the kids. Claire was full of smiles for everyone and had a wonderful time being passed around and a constant bottle in her mouth as she nibbled off and on on her shake.
The kids were in bed by 10pm.

May 27  

Claire was up at 2am, drank 4oz of formula and back to sleep for only about 20 minutes, when she woke again and hungry. Dad took her and fed her a couple more oz of formula and she was back to sleep for the night.
In the morning, mom woke her briefly for meds then let her go back to sleep until after mom was ready for work. When mom woke Claire, the poor dear was so exhausted. Mom gave her a quick sponge bath and a change of clothing and by then Claire was looking around for the bottle. Once it appeared, she opened her mouth and followed it briefly until it was in the mouth and baby was gulping her breakfast.
After breakfast, mom took Claire to daycare and then went off to work.

May 26
10lbs, 6oz

Claire was up for her, now usual, 2am feeding. She did really well drinking 5 oz of formula in 20 minutes and then going back to sleep. Mom didn't mind that at all.
Mom woke her briefly for morning meds and then let her go back to sleep for a bit. Claire slept and slept and mom thought for sure she would get up hungry, so she let her continue sleeping. Finally, around 11am, mom woke Claire and she was still very exhausted. Mom fed her 9oz of shake, which Claire gulped down in record time and mom decided to let her hang out for a while before more food. Mom took her on the back porch where it was nice and warm and gave her a sponge bath. Claire still appeared hungry and mom gave her more shake after a bit. Around 4pm, she finished 6 more oz of shake, as dad watched her and mom had to go in to get a project completed. When mom got home, she fed Claire even more.
Claire was visited by Music Therapy and the Hospice Nurse. She weighed in at 10lbs and 6oz. After the diarrhea and the bout with her cold, mom was glad she didn't lose any weight and expects her to gain much much more next week! Claire's physical therapist took on another job, so Claire won't be seeing her for PT anymore... sad.
In the evening, still no BM's since last Thursday, dad bought her some suppositories while mom fed her straight prunes. Upon giving her some medicine, Claire 'gave up' all the prunes, so mom had to start all over 'filling up her tank'... she was hungry, she just gagged on the meds, too bad too, those prunes would have been a nice complement to help her tummy with the BMs, but they were the last ones in the house, so Claire had to settle for applesauce. Claire got her suppository, and had a nice big BM (hey, you don't read this for the interesting stories, right?) and mom was so proud. Claire had a nice long bath, a few more oz of shake, and went to sleep around 9pm and so did mom!

May 25  

Claire slept through until morning. She woke up and didn't appear congested. After meds, she drank 7oz of applesauce shake. Within a few minutes, she seemed a bit hungry, so mom fixed another 4oz, but Claire fell asleep in her carseat before mom had the chance to feed it to her.
Claire finished her 4oz at daycare plus another 7oz during the day. By 6pm, she had 18oz of shake.
When mom picked her up, she was fast asleep, and slept all the way home, even when the car changed directions and the sunlight was temporarily in her eyes... she didn't flinch. Once home, mom put her in her boppy so she could be more comfortable, and put on the ceiling fan. It was nice and cool for her, but perhaps a bit too cool as she woke up and decided to drink more shake.

May 24  

Claire was up until 3am. She had a fever of 102 (103 rectally) at about 2am so mom gave her a Tylenol suppository and the temp slowly came down. Claire was very congested, even in her swing, mom gave her a decongestant, Dimetapp, to help dry up the very runny nose that she had also. Mom was up at 6am to give Claire meds and get ready for her sister's school program, then off to work.
Dad stayed home with Claire today since she had a fever. He fed her pedialyte during the day. Aside from her cold and fever, she hadn't had a 'smelly' diaper (BM) since her diarrhea... so mom and dad thought the pedialyte might help that as well. She drank well, probably about 20oz during the entire day.
When mom got home in the evening, dad finished feeding Claire a bottle and she went to sleep. Mom decided around 8pm to put her in her bassinet and get some rest herself, as she had only about 3 hours the night before and a full day at work. By 10pm, Claire was up so mom fixed some formula with a little pedialyte in it. Claire only drank 2oz, then appeared disinterested, so mom put her back in her bassinet and she was back to sleep within a minute.... that was around 11pm.

May 23  

Claire was up until 4am. Her uncle was up with her trying to figure her out, so the story goes, her aunt and grandpa joined in at various hours during the night. Once the shift was changed to Grandpa, Claire went to sleep, rumor has it, at 4am.
Mom was able to sleep in a little. Mom and Dad met the rest of the family at church, then off to lunch, and then to see a big beautiful home. Afterwards, Grandma and Grandpa left and Claire's family hung out at Claire's uncle's house for a little while while dad took a nap and her brother and sister plaid in the pool with cousins.
In the evening, Claire ate really well, mom was proud, but she had a very runny nose all day and it bothered mom. She gave Claire some Dimetapp to see if it would dry it up a little bit. Claire went to bed at 10pm, but mom isn't sure she really went to sleep since she was so congested. Her bassinet mattress is propped up so she sleeps in an incline, but it didn't seem to do the trick for her, so mom put her in her swing, after several nose suctions.

May 22  

Claire woke up at 5:30am and was so very hungry. She seemed clear of the diarrhea and throwing up, so mom figured it was just a 24 hour bug and happy it was gone!
Mom frantically got the kids packed while dad had some furniture to move. Once packed, they bolted over to Claire's uncle to drop off the kids. While there, they opened up a ton of gifts that were sent up by Claire's aunts and grandparents. It was so cool... there was something for everyone in Claire's family, and of course Claire, who made out with a bunch of new rubber duckies... they squeak too!
After opening gifts and going over the Care and Feeding of Claire, mom and dad were on their way. They went home to change clothes and then off to the Parade of Homes to get ideas of what the new homes were including. The last home they saw was a $2million home, and mom was most impressed with the 2900sqft patio that was entirely screened in, some of it was covered and included a kitchen, tv and fireplace. Mom was hoping to show it to Grandma and Grandpa on Sunday. It isn't everyday a home like that is open for the public to tour. Later, mom and dad went to dinner, then off to see a local band. Mom was so tired, but dad got his second wind, so they were out a bit later than mom wanted... but she didn't complain, it was nice for her to have her 'prince' all to herself!
Mom called to check on Claire a few times. She got the usual line that everything was fine and she was eating well. No diarrhea, and no BMs either. Mom had been feeding Claire bananas and rice cereal for the past day hoping to solidify the BMs a bit. That was the final word that mom had for the night. She knew Claire was in good hands, and was happy that her family would take the time to learn to care for Claire.

May 21  

At 2am, mom was up and feeling a little nausea, after a couple Tums, she went back to sleep. Sympathy for Claire, or getting her bug? Claire was up at 5:30am with her loud cries.
Dad was kind enough to get her and gave her some pedialyte, only 2oz, to be sure she could keep it down. He also changed her diapers, still some diarrhea tho. Mom fed her another 2oz of pedialyte after about 30 minutes and then fixed bananas and pedialyte (1:1) and she drank 2oz... she was so hungry, but mom was cautious to give her time between each feeding to help her keep it down. She seemed okay with the idea as long as her thumb was close by. By 9am she had another 1.5 oz of banana mix and mom put her down to get some rest as she was up for a few hours, and sick babies need rest for strength. She's kept it all down (nearly 8oz), gagging only once and fell asleep relatively quickly, and mom continued to get some work done.
Dr called at 11am. Said something is going around that fit's Claire's symptoms. Half of the dr's office has/had it and it is about 2-3 days long. A friend of mom's from work said it went through her family and it was 10 hours long. Hopefully the worst part is over for Claire (and everyone else in the family too!). Dr said it was viral, so no treatment short of clear fluids. Lots of handwashing too.
Claire's Grandparents and her aunt were coming into town to care for Claire and her brother and sister over the weekend, so mom and dad could have some rest. It was a terrific idea and a gift for Claire's birthday. Mom was excited to see them, but torn that she wouldn't spend much time with them, as they are here to take the kids and not spend time with mom, but mom was over that relatively quickly as she realized she would see them again next weekend!
The family got together to eat some steaks - yum - Claire's dad makes some really good steaks! They were grilled and very yummy. Claire continued to eat, increasing the amount with every feeding until she was up to about 6oz. Unfortunately, in the evening, her grandpa was feeding her and she threw up, a good amount too, but he remained clean. :o)
When they got home, Claire was in bed by 11pm.

May 20  

Claire was up at 2am, then again at 4am. She woke up both times with very loud cries. The first one had mom jumping up out of a deep sleep. Guess that was the best way for Claire to get mom's attention, and wow! Mom fixed her some ped with juice thinking it was a constipations cry. Claire drank some juice and fell asleep. The second waking went just like the first, only mom gave her some decongestant with her juice, and she went right back to sleep after drinking a few sips.
In the morning, mom woke Claire as they had a busy day. Mom had a meeting at work and that meant Claire needed to be ready to go to daycare early. Claire finished some pedialyte and juice, totally 4oz, then started a 4oz bottle of banana shake. She drank only 2-3 oz of that, fell asleep, then off to daycare so mom could make her early morning meeting.
Claire arrived at daycare as a very tired baby. Her caregiver picked her up and she was 'out of it'. So she put Claire down for her morning nap. Claire woke up around 11am and ready to eat with the other babies at the daycare.
She had several large BMs throughout the day, mom thinks it is because she had the juice in the morning.
In the evening, the family went to a graduation mass, as Claire's cousin was graduating from 8th grade. Claire was asleep, but it was a while since her last meal, so mom woke her and started feeding her. She drank exceptionally well, and downed about 6oz. During that time, she was filling up her diapers, diarrhea... Her daddy thought it was the worst he'd ever smelled, and in the middle of church. Mom quickly took her to be changed and upon arrival back to the mass, informed dad that it was the last diaper. Mom's fault for not checking before they left... but then, who knew she would need more than one for a 2 hour outing. Who knew she would get diarrhea out of the blue. Just as mass ended, Claire decided to throw up about 2oz. Mom was not impressed and a bit frantic. Dad had left for the car to see if there were any extra diapers there, but he keeps his van a bit too clean for that... so he returned after 10 minutes as he had gone to pick up some from the local drugstore. Claire was changed once again (within 15 minutes of the last changing) and then the family said goodbye to the graduating kids, they were off to a dance. Mom was able to meet some of her niece's friends. They were so sweet and were big Claire fans. They even told mom about the phone tree they have when there is "Claire news". It was pretty cool, and they were very excited about their graduation!
Once home, Claire continued to eat and eat... then throw up. At first, mom thought, 'well, she wants to eat, so she's probably keeping some of it down'... then after all the cleaning up, pretty much decided to just feed her 2oz at a time. She also started Claire on bananas with a splash of pedialyte for consistency. By 11pm, Claire had a few oz of bananas that she kept down and was getting a little tired. She had a long night, so she went to bed and fell asleep almost instantly. Mom too.

May 19  

Time for PT and Bicycles!Claire was up at 1am and then again at 4am. Mom was a little nervous about feeding her too much, as she didn't want to be cleaning it back up. She fixed a 4oz bottle of pedialyte and formula and Claire drank most of it, with only minor spitting up.
In the morning, Claire drank 4oz of applesauce shake, but up came about 1oz... later she drank another 4oz of applesauce shake and kept it all down, except maybe 1/4 oz during her PT visit.
When hospice came to visit, she drank another 4oz of shake (apples) and kept it all down, then took a nap around 5pm... tho she was very alert all day and not wanting to sleep.
No seizures today, mom started a new 'bottle' of prescription meds, so perhaps that helped some. Mom is going to compare the consistency of both bottle to see if her theory of 'end of bottle' meds are different than 'new bottle' meds.
Claire fell asleep in the early evening, and mom notice she had spit up a little when mom went into her study to get some work done. Mom moved her to her bassinet, thinking they could just get up with her later when she was hungry, but realized it had be 4-5 hours since her last bottle,a nd she needed to eat, so mom woke her to eat. She drank 6oz of applesauce shake and went back to sleep after a diaper change and meds... around 10pm.

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    Tubby Tubby Tubby!  Hey, I may smile... afterall, Tubby Tubby Tubby!!
May 18  

Claire was up at 7am, and hungry. Mom fixed her a bottle and noticed she was a bit warm. Took her temp and it was a very low grade fever, but mom opted to give her some Advil after breakfast... small mistake. After her meds and about 3oz of cereal, she gave her Advil and Claire gagged on it, and everything came back up... mom was certaing the meds did too, so she gave her more meds. Claire fell asleep without eating more, and mom took her to daycare. She was still sleeping there and pretty out of it. Mom is a bit worried that Claire is not feeling well, and may be getting sick again. She will keep close contact with daycare today to check on Claire, and a call to the dr office.
Dr said to give her tylenol suppository, to help relieve the fever (and gagging). Claire did a little better, still throwing up in the evening, but eventually keeping more down than up. She went to sleep around 10pm after drinking a shake and having a bath.

May 17  

Around midnight, mom thought Claire had finally had enough to eat and was ready to settle in. But after 20 minutes, Claire started to stir again and let out a cry. Mom fixed another 4oz of formula/prunes/applesauce. She drank most of it and mom put her in her boppy.
Meanwhile, mom heard a 'buffalo' coming down the stairs with an irratated voice. In the middle of a quiet, dark night, it can be quite alarming. It was Claire's older brother, apparently walking in his sleep, er... stomping I should say, down the steps. Mom, holding Claire, called out to him and fortunately, he came into the room, as he was previously heading out to the family room. Mom asked him to lay down next to her. He did, and within milli-seconds, he was back in a deep sleep. Dad was due home soon, so mom thought she would let him take care of Claire's brother when he got home.
Mom put Claire back in her bassinet, and after a few minutes, she started wailing again, and it woke up her brother. A busy night at Claire's home. Eventually, dad came home, put Claire's brother to bed and took over the Claire feeding so mom could get at least a little rest before work in the morning. Claire may have dozed off around 1:30am, seems to be her 'magic' time now.
Mom woke her in the morning for a bath and breakfast, and dad took over. Mom went off to work and later dad took her for a dr appt. No change, dr said she looked good and weighed in at 10lbs 3oz. A one-pound loss from the hospice scale, but a one-pound increase for the dr's scale... so we will go with that!
After the weigh in, dad took her to daycare. He said she had about 8oz in the morning to drink, and thought that was acceptable since she was up so late drinking. Mom thinks she just can't seem to fill her tummy. Either that, or she is teething, and the bottle feels good on her gums... she does bite down on it a lot.
Claire didn't eat great at daycare, and at home she had a seizure. Mom is starting to consider that her lack of eating could be related to her seizures.
In the evening, she drank about 6oz, then threw it up... on mom. It was almost like she was gagging, so perhaps it is related to the little cold she seems to have. She drank a little more and later in the evening had another seizure.
Claire was in bed by 11pm, and sound asleep, no cries during the night.

    Is this finger edible?  Couting my fingers again... one, two...
May 16  

Claire was up until 1:30am, about the time her daddy was coming in from singing. Mom was exhausted, but happy to finally get some sleep as Claire finally settled down. Mom figured out that Claire was happiest in her boppy pillow on mom's bed, so mom didn't want to mess with her and left her there. Everytime she would look over at Claire, the peanut's eyes were wide open and she was just looking at mom. Mom thought she was at least not in pain, and felt she could rest with Claire right next to her. Mom kept trying to feed Claire, but she would just push the milk back out. Claire finally stopped the cries and everyone was able to go to sleep. It may be partly due to her sleeping all day.
She was up again around 6am, and mom gave her meds and about 5 oz of shake including sweet potatoes and applesauce. Everyone was up pretty much the rest of the morning, since it took Claire a good long while to finish her breakfast, and mom had to shower, give Claire a bath and get her ready for church, follow up with the other kids to be sure they were ready as dad worked on contract for work.
Claire was, as always, an absolute angel in church. She doesn't let out a peep and she drank some pedialyte which she finished after she got home. Not much in the way of naps today, as she hung out in her carseat ready to go see her uncle. She started her 'intermittent' cries again, and mom fixed a bottle for her, she drank about 2oz as quickly as a Claire does and seemed content for the ride to visit her uncle - cries stopped. It was a nice visit over there, and dad showed up to get Claire's big brother for a birthday party, so mom hung out with her brother and niece, and Claire's sister plaid. Later, mom took the girls to pick up Claire's brother from the party, and some dinner, and them home to get the kids fed and in bed by 8pm. Claire slept through dinner, she really needed it, and drank well at her uncle's home. She had about 18oz before 7pm, including 5oz of pedialyte.
In the evening, she drank about 10 more oz before midnight, yes, she was still awake then.

    After tubby... feelin' CLEAN!  Here's a good pose for ya!  Do I look cute now?
May 15   Claire didn't sleep well tonight, at least it was a weekend and mom didn't have to get up for work. Claire was up at 3am, as she seems to be doing a lot of lately, only now she does it with a loud cry. It is so loud it has mom jumping up in bed. It is a cry of hunger, and once Claire gets her bottle, you would think the child hadn't eaten in months... she appears so very hungry. She drinks about 3 oz during these middle of the night feedings.
She was up around 7:30am and mom fed her another 5 1/2 oz and Claire spent most of the day drinking and sleeping. She wasn't very bright eyed, just tired eyed, so mom let her get her rest. During the day, she had about 20oz of shake, and no pedialyte as mom ran out.
Mom finally got some good batteries for Claire's swing. It has been out of commission for at least a month or two as the new batteries mom put in didn't work. Dad bought them in bulk at Sam's and mom tried several packages but none worked. So dad had to go buy some at the home improvement store and when mom put those in, they worked like a champ. Red Dog is BACK!  :o3
In the evening, Claire started random cries. To mom they were random because she couldn't figure out what they were for. She thought it sounded like a painful cry... a short cry that stops, but leaves a pitiful looking baby. Mom gave her some mylacon, then some decongestant and once that kicked in Claire was able to drink really well, so mom thinks the cries are hunger... tho at night, when Claire usually goes to bed at 10pm, she was doing her random cries, only now they weren't so random, in fact, they were about every 5 minutes, like some food poisoning... or gas. Mom tried to feed her, and she was calm in mom's arms and in the boppy, but when mom put her back in her crib (even when she was almost asleep) the Peanut would wait about 3 minutes (long enough for mom to get comfy in her bed and almost asleep) and another loud cry. This lasted all evening and into the next morning.

May 14


  Claire was up at 3:30am, mom fixed her a bottle and she drank about 2-3 oz, then mom cleaned up her nose as it is still a bit runny and gave her a decongestant and put her back to bed. She fell right back to sleep.
Mom woke her in the morning and she was all smiles.
Smiles...  ... everyone, (gummy) smiles!!
Mom got her ready and took her to daycare.
Claire had a good day, drinking about 8oz, then at home, she drank another 10 oz of shake. She was asleep by 9:30pm, snoring of course... she still has her cold with runny nose and congestion.

May 13
10lbs, 4oz


  After getting Claire back to bed around 12:30am, mom was awakened around 3:30am by Claire's sister, who decided she was afraid of the dark and wanted someone to come sleep with her. Mom teased her that her room was well lit and with the radio on, it was like a party up there. She didn't go for it. Mom promised to send dad up (if she would let mom go back to bed) and sure enough it worked. Mom went back to bed and mumbled to dad that 'middle child' was unable to sleep, and dad got up to go check on her. What a good dad!
Claire was awakened by her mom in the morning for her meds and early morning bottle. She had a diaper and outfit change, hair brushed and drank 6oz of pedialyte. Mom had been giving her about 8oz per day of pedialyte because Claire's little tummy has been growing and mom wants to be sure it is because she is eating a lot, and not because she is 'stopped up'.
Dad took Claire to daycare this morning, as mom had a morning meeting for work and had some loose ends to tie up on a project before the meeting.
Mom swung by Claire's daycare after her meeting, around lunch, to meet with the Hospice nurse and get another weight on Claire. She weighed in at 10lbs, 4oz. Mom was expecting so much more, as Claire had been eating some rather large meals lately, but her weight is up and that is always a very good thing. Claire's caregiver said the little Peanut has a large BM this morning and drank 4oz of shake. Mom thought Claire was hungry again and her caregiver was feeding her when mom was leaving. Perhaps the pedialyte is helping loosen it all up.
After her meeting with Hospice, mom went back to work.
Claire had a good day and drank nearly 10 oz at her daycare. When she got home, she had another 3oz, then mom fixed her another 6oz. Unfortunately, by the time she took her meds, she gagged a bit on one of them and mom got to see about 3 of those oz again. Claire was in bed around 10pm, and mom around 11pm.

May 12


  Claire slept through the night and mom woke her at 6am for her meds and shake. She drank 3oz and went back to sleep. When she woke up at 11am, she drank 8oz of shake, and may have wanted more, but mom didn't want to see it again, and she was going to have PT soon, so mom opted out of more shake.
Claire plaid with her Physical Therapist for a while, then took another nap around 2pm. Mom woke her later to go to a recital for Claire's sister. It was their first recital (for either of them) for dance/gymnastics.
Claire came home and drank a few oz of Pedialyte and plaid with her reflection in the mirror.
Claire had a neat evening, she was visited by her cousin who is moving out of town this weekend. It was sad for the family to say goodbye to someone so dear, she will be missed, but hopefully back for a visit or two.
Claire drank another 8-9oz of shake and was in bed by 11pm, then up again at midnight. Mom thought it could be gas, so gave her some mylacon and a little pedialyte and put her back to bed.


May 11
14 months!

10lbs 2oz


  Claire slept through the night and was up hungry, with a cry, at 6am. She wasn't too sweaty and woke up just in time for meds and decongestant. She drank 7oz of her shake (bananas) and was enjoying her new mirror that her mom bought for her. She has loved seeing another baby looking back at her, and gives that baby some funny looks, like the ones mom gets from Claire. The looks where she gazes deep into her eyes, then raises one eyebrow as if to really ponder with a 'hmmmm'.
Mom wisked her off to daycare only to pick her back up for a 12 noon dr appt. She weighed in at 10lbs 2oz (that is up 5oz from last week :o).
Her dr suggested increasing her dosage only a minimal amount due to her latest round of seizures.
Claire had no seizures in the evening and had a really good night. She went to bed after bath and shake, around 10:30pm.
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