Claire's Journal -- Twelfth Month
March 10   Claire woke up only once during the night. At 12:30am, she was hungry. Mom changed her clothes as she was sweaty again... Claire ate 2oz of shake but didn't care to go back to sleep... she wanted to look around and check the room out. Mom put her on her chest and patted her back, but her eyes were still wide open. So mom layed with Claire on her chest and eventually they both fell asleep, then mom woke and put her in her bassinet, around 2am. Mom put her bassinet against the oxygen machine again. Mom is letting her sleep in... her little body has lots of food to process from yesterday! Mom can't wait to see how much she eats today... she even stocked the pantry!
Claire is looking forward to seeing Physical Therapy and Music Therapy today. Mom has much work that she brought home to do.
Big big big day tomorrow!! :o)
The family had friends over for pizza as a pre-celebration. Claire enjoyed herself as she got two new party dresses! Mom will wash them tomorrow so she can wear one for her party tonight, and the other for her 'bash' on Saturday.
Claire went to bed at 9:30pm after two bottles of shake.
March 9
51 weeks!
  Claire didn't wake up during the night... she slept strainght through until 6am. Mom got up and gave her 5oz of shake after her meds. Then another 5oz for the road, and dad took her to daycare.
At daycare, she finished off the previous 5oz (for the road), had another 4oz for lunch (3 of formula and one of pedialyte) and then another 5oz of formula. At 4pm, she had another 5oz bottle, but ended up leaving about 3oz of it, as mom prepared her a shake when she got home. yum!
In the evening, she drank about 8oz of shake, had a nice bath and another oz before drifting off to sleep. It seemed you couldn't feed her enough... or get the bottle for her quick enough. She was a hungry little baby all night. She ate nearly 30 oz of food during the day... including cereal, prunes and bananas in her shake.
She knows Grandma and Claire J's mom are coming to see her from far away for her birthday bash... and she wants to be 'filled out' for them.
March 8   Claire woke up only once during the night. At 1am, she was hungry. Mom changed her clothes as she was all sweaty, changed her diaper... Claire ate 2oz of shake then fell back asleep. Mom put her bassinet against the oxygen machine so she could feel the slight vibration, and Claire didn't wake back up until morning. Mom woke her at 7am for meds and daycare. Dad had only gotten to sleep a few hours before and was exhausted. But he is determined to get the family organized! Go Dad! Claire went to daycare today, the first time in almost 2 weeks. She had a great day. Came home and had a bath and lots of shake before falling to sleep on mom's lap during Claire's dinner.
Claire went to bed at 8:30pm.
March 7   Claire slept through the night until 5am. Mom gave her a couple oz of shake and her meds so they could sleep in. Claire went right back to sleep until mom woke her at 9am so they could start getting ready for church. Claire had her hearing aid in for church and heard some nice new sounds, like the organ and the choir.
After church, they went home and no one took naps. It was much too gorgeous of a day (high was probably 80 degrees), so everyone went out to play in the yard. Claire's sister was chasing butterflies, lizards and frogs, while her brother played with a friend who lives next door. Eventually, Claire's sister went over there for a while and Claire hung out in her playpen... napping mostly, with small breaks to eat in between naps. Mom had a mosquito netting that fit snugly on the playpen, and the fan on above Claire so she could stay cool. There was a nice warm breeze that came through the porch too, so she didn't sweat.
In the evening, Claire's uncle came over with her aunt and cousins. The came for dinner. It was fun having them as everyone hung out on the porch and enjoyed the weather for a while, then inside for dinner and dessert. When they left, Claire got a bath and off to bed with everyone, except dad, he had some 'serious' filing to do...he was up until the wee hours of the morning working on it.
Claire went to bed around 9pm.
March 6  

here's your smile... sort of...Claire was up at 12:30am, hungry. Mom fed her... and she was still fussy... around 3am, and after about 5oz of shake, they both got some rest and at 5am, she was up again... hungry.
Mom asked dad to get her, and he did... he fed her more bananas she finally fell asleep.
Mom woke her at 9:30am for meds and breakfast. Claire likes to be up all night and sleep in... if mom can sleep in too (like on the weekends) it works out pretty well, except for the 8am meds... that doesn't always fit with mom and Claire's idea of sleeping in. Claire didn't drink too well, or maybe just very slowly, she kind of 'nibbled' all day, but her diapers were very full!
Mom layed with Claire's big sister for a while until she fell asleep, then mom and Claire took naps while dad and Claire's brother watched a movie.
Later, Claire's brother had a basketball game, the last one of the season, and the whole family went. The girls showed up after their naps, and Claire without her hearing aid... the noise is just too loud, and mom was rushing out the door and forgot it... guess that will happen a few times.
After the game, they enjoyed visiting with friends at a restaurant where they had dinner. Then home to watch some tv and relax. Tv watching included the video of Claire's sister singing to her (mom loves the part where she sings ABC's then sings them backwards, even her brother was impressed!), and Claire's brother's basketball game.
Claire is finishing off about 7oz of shake, then going to bed... hopefully for the entire night. :o)

March 5

New Hearing Aid!!

Claire with her hearing aid.. and big blue eyes.Dad put Claire back to bed at 2am, and was till up until 3am getting some work done. Mom got up shortly after dad went to bed, as Claire was awakened. Mom put a pacifier in her mouth as she went to get her bottle... when she returned, Claire was asleep, so mom went back to bed.
Mom's alarm went off at 5am to get up and start Claire's sleep deprivation for her hearing appt. Mom hit snooze a few times and finally got out of bed around 6:30am... She got Claire up... covered in sweat again. Claire got a bath, then a nice shake... she had about 10oz of shake before her appt at 8:30am.
She had her ears cleaned out... left and right. Then she went to sleep, rather quickly, and was ready for her hearing test. She slept really well through the whole thing... woke herself up a few times, probably from the snoring... maybe from a mild sleep apnea, but quickly went back to sleep.
When the test was completed, she was fitted for the hearing aid. The aid was adjusted according to the results from her test (an ABR test), and then mom took her to the 'booth' where they sat down in a chair, Claire was still half asleep from the testing. The audiologist was there with mom as mom held Claire. She turned the aid on and put it in Claire's ear. Once it was in, Claire's eyes opened really wide. She looked around and was very bright eyed and aware of the new sounds. Mom teared up... she was so proud that Claire was able to hear for the first time... she talked and talked to Claire. It was a very exciting time! All these months of testing, sleep deprivation and long hours at the ENT (ears, nose and throat) and they have finally paid off! They go back next week to learn more about the care and feeding of the hearing aid. The batteries will likely have to be changed every week... a small price to pay!
Claire got an early Birthday present from the Children's Home Society - the gift of sound!  CHS paid for the hearing aid. Thanks guys!!!
Claire got home and had a bath. Mom learned the hard way that the chemicals used for the hearing test (to attach the sensors or to clean them up) are harsh on Claire's sensitive baby skin. So a bath before to get her sleepy, and a bath afterwards to clean her up. She drank another 4oz of shake when she got home, around 2:30pm, and then in her swing... with lights AND sound... she dozed off... mom won't be getting any sleep tonight if she doesn't get that baby awake!
Pix coming soon!
Claire went to sleep around 9am, but was up again after midnight.
Here's pix of Claire with her shiny new hearing aid. Notice the dog 'tether' to keep Claire from losing it if it falls out of her ear. She hasn't even tugged on it in the least, so it should be pretty safe for a while. Mom has considered painting the dog red.

March 4  

how many fingers can a baby put in her mouth at once... let me see... one... two... threeeeee...Mom woke up just shortly after midnight to see dad asleep, shoes still on, next to Claire, next to mom. Claire woke up, very upset, around 2am. Mom fixed her a bottle and she drank about 1 1/2 oz and went back to sleep. She did the same thing at 3:30am and 5am. Mom was exhausted.
A friend of the family's offered to watch Claire today. Mom thought it was a good idea, since the option was to put her in the daycare, a fine daycare, but still many kids. And with the wonderful option of having her spoiled while mom went to work. And she was. She had a big day having every whim catered to and having someone's full attention. The whole day appeared to be planned around Claire.
Mom wasn't too sure Claire wanted to go home... guess that is good.
Mom was sent home with dinner too, a very wonderful, unexpected present, for which mom was very grateful! That also meant Claire had even more attention when she got home, since mom didn't have to cook. The family is so very blessed to have such wonderful friends! Mom felt spoiled too.
She got an early bath and drank 5 oz of shake with bananas in an instant. Then she finished 3 more oz. She wanted more, but mom thought that was quite a bit, and put her in her swing where she fell asleep. Mom put her in her bassinet, just before 9pm. Now, mom will join her, as there is much sleep to be caught up on... and a big day tomorrow. Claire goes to get fitted for her hearing aid!

Claire was up at 11pm. Dad took her to feed her and she drank another 2-3oz.
Here is a pix of Claire trying to get both hands in her mouth... notice the thumb from the left hand and three fingers from the right.

March 3
9lbs 11oz

Claire was up at 11pm, hungry... then never seemed to quite to back to sleep until about 3am. Mom was up with her... feeding her more and more and more. At one time, she was actually crying, and it woke her dad, so he got her bottle ready for mom... by the time she went to sleep, she probably drank 8-10oz of shake. Mom gave her some mylacon for gas, which is probably what ultimately put her to sleep. Mom let her sleep in bed between mom and dad. She woke up all sweaty when mom woke her for her dr appt at 7am. Mom gave her a sponge bath and fed her 5oz of shake before her weigh in. She weighed 9lbs 11oz... probably all from her late night drinking! That is up 10 oz.
She came home and fell asleep in her bassinet for 2 hours, til mom woke her for her physical theray appt at 1:30pm. Afterwards, mom put her in her swing next to the screen door and she was swinging as a nice breeze came in for some warm fresh air.
It may reach 80 degrees today.
Birthday preparations continue to be underway! We celebrate week from today! It is Claire's birthday 'month'!
Claire never seemed to go to sleep last night. Dad took over after her bath and after mom fed her. She tried green beans. Claire seemed to enjoy them, but dad found out a bit later that perhaps that wasn't the case. She spit them up.

March 2
Week 50

9lbs 1oz

She fell asleep just after midnight after having another 2oz of shake, then another oz or two of bananas straight (she showed signs of diarreha).
Claire slept through the night.
She was up again at 8:30am, had her meds and a couple oz of shake with bananas, a little pedialyte as needed to wash down the meds, and then fell back asleep around 10am. That gives mom an opportunity to get some work done. She is taking an anti-seizure medicine, a heart medicine and one antibiotic, which will finish off on Wednesday.
Mom woke Claire at 2:30pm to eat. She drank 4-5 oz of shake and seemed to be still hungry. Mom fixed another bottle of formula and whisked Claire off to get her RSV shot. She weighed in at 9lbs 1oz. She did well, crying for only a fraction of a second. She fell asleep on the way home.
Claire woke up hungry. Mom fed her and put her in her boppy pillow. Soon afterwards, she noticed Claire was having another seizure. It was 7pm and her med wasn't due until 8pm, but mom gave it to her early. Mom fed her about 4-5 oz of shake and Claire fell asleep around 9pm. She is sweating a lot which makes mom wonder. She had also woken up sweaty this morning, so much so that her sheets needed to be changed. At her RSV appt, she had a low grade fever at 99. It could be a long night, but for now, she is resting comfortably. Mom will probably have to wake her soon to change her. Mom and dad haven't noticed any more seizures tonight -- fingers crossed. :o\
Claire fell asleep around 9:30pm.

March 1

We Are Home! Claire is doing really well.

YOU... I pick YOU too get me some banana shake... now go...Claire was up at 5:30am and hungry as ever. Mom got up too and showed the nurse how to feed her, they ended up talking and mom didn't get back to sleep.
The nurses were going to give her another nebulizer treatment, but mom didn't think Claire needed it and everyone agreed to let the dr decide.
She drank 5 oz of formula with pedialyte by around 8am, and the dr came in to check on her. The dr asked mom what she wanted to do from here. Mom said she wanted the IV and oxygen off, and she wanted to go home with the same meds as Claire started with. She would have to continue the antibiotics (she was on two of them), but that would be okay with mom. The dr asked if she had the neb treatments at home, and mom said she didn't, so they thought it would be okay to stop them.
They decided to try taking Claire off the oxygen again, but her levels kept dipping, again, so mom gave her some 'blow by' oxygen and kept testing her toe with a little gadget they let her use. Her levels would dip into the 80% area, but always would pick back up to the upper 90's. Mom felt okay with that.
Since she was eating well and had her first bm since Thursday, they 'halved' the IV amounts for a couple hours, then at noon, took her off the IV altogether as she was able to keep food down and eat plenty.
Claire was able to reach her right thumb again and suck on it... it was a banner day, she thought! Mom and Claire took a nap and the nurses put a note on the door not to disturb them, and they really didn't! Mom slept for almost 3 hours with a few wakenings from Claire wanting a bottle in her mouth and then dozing back to sleep. It was a good rest.
oooh... whatcha got there?   is it food...?We Are Home! Claire is doing really well. Eating as much as mom will let her (she doesn't want to see the food twice, so she's taking it easy with the feedings). Claire wants a bottle in her mouth all the time, tho she isn't always drinking, and mom doesn't want to start that.
Mom and Claire got home around 4:30pm and were so happy to be home. Dad made everyone a big spaghetti dinner and declared that everyone was going to bed early tonight. By 6:30, dad fed her more shake and she went to sleep in her boppy pillow on the couch. That gave mom some much needed time to update the web journal, as she thought there would be a lot of concerned friends out there. Mom had over 1200 emails waiting to download, she is certain that 1190 of those are likely SPAM.
The weather is beautiful today. The dogwoods are budding up and ready to burst. Mom thinks they are holding off until Claire's birthday.

Claire woke up around 8:30pm and hungry. Mom gave her her meds and then fed her until about 11:00pm... She put Claire down for a bit, but Claire wanted to eat a bit more.

February 29  

Claire was up and down all night playing with the nurses as mom slept on. In the morning, the new nurse came in and introduced herself. She told mom that when the Charge Nurse (head nurse) was missing one of her nurses, she only had to go to Claire's room to find the nurse rocking Claire.
Going to the Hospice house was a good move.
Mom slept until 9am. She showered and started back with getting Claire to eat. She wanted to get Claire off the oxygen, so they slowly turned down the oxygen until Claire was down to the minimum amount. They took her off the oxygen, but her levels kept dipping so they put her back on the minimum amount.
Claire's eating slowly picked up through out the day and in the evening she was ready for shake. Mom made a Claire Baire shake of formula, barley and a splash of Pedialyte. Claire drank about 5 oz that evening and she and mom went to bed soon after Claire's 10pm meds, antibiotics.

February 28  

Claire's third day in the hospital.
During the wee morning hours nursing staff woke mom as there were 2 or three of them huddled around her crib. They said her O2 (oxygen) levels had dipped extremely low. One of them was from respiratory and was looking her over. She ended up getting a nebulizer treatment to open her bronch tubes and help her breath easier.
She fell asleep around 2am, finally, after fussing all night. She was very uncomfortable. Mom asked the nurses to not come in to check her vitals, as Claire needed her rest and she finally fell asleep.

The intern came in and looked her over
Her levels dropped again, up and down... and as morning came, her intern came to check on her. He still wouldn't give her a decongestant, as mom thought he should. He admitted that her head was congested and could influence her breathing, but suspected it was more from her chest than from her head that she couldn't breath well. He also believed that the decongestant would act like a sedative and shouldn't be given to small children. Mom said she would rather have Claire a little sleepy and breathing, than awake, not breathing well, and not eating.
Eventually, he said he would give her a decongestant and he would start her on the antibiotic that they both knew would knock out the pneumonia.
He felt that, listening to her lungs, he may have missed some additional congestion there due to her very loud heart murmur. In other words, he suspected that her pneumonia may have gotten worse, and ordered chest xrays stat.... that means they actually come to the room and take the xrays there... As the xrays were ordered, he spoke with mom and asked if she wanted a breathing tube for Claire if she needed it. Mom was so very upset. She said, 'no', that she and Claire's dad didn't want that for her. And became very upset. Mom felt that Claire came into the hospital with a small bmy cutie pie pose... do you like it?  not too comfortable, but mom wanted me to do this... and what mom wants... well you of pneumonia, and a slight fever, and now was sicker than when she came to the hospital. She was overwhelmed and had only gotten about 1/2 hour sleep that night. Claire wasn't eating anything... she couldn't breath well. Mom became very irritated at the whole situation. At 5am, mom called hospice and spoke with the on-call nurse there. She said it wouldn't be any problem to move Claire over to the hospice home and the nurses there would care for her while her pediatrician could still come in once a day to check on her and continue her care. The hospice nurse on-call was wonderful. The on-call nurse made sure Claire was the first stop for the hospital hospice nurse in the morning. She wanted to know if mom wanted to move Claire to the house and mom said she wanted to think about it. Perhaps mom just wanted the seizures controlled and the oxygen stabilized first. When the nurse came back through she admitted they weren't set up for babies but would make every effort to get what Claire would need before she arrived. Claire would be their first baby in the house, ever. They would need a little time to prepare for her, so mom decided that at 3pm, they would go over to the Hospice house.
The decongestant finally came, she was started on the really tough antibiotic and mom thought that was all she could do.
Then, the seizures started. Around 6am, mom noticed a small one. She called the nurse and asked for the 8am anti-seizure med to be given early. They did, and she got it around 6:30am... nothing happens fast enough in a hospital. Even after the meds, her seizures slowly got worse and worse... mom mentioned to the intern that maybe her meds needed to be increased, as they hadn't been in a while, and she'd been gaining weight. He kind of agreed that it was possible. When the dr came in, she was terrific. Mom suggested the increase in the anti-seizure meds and the dr went to recalculate it. She said the dose needed to be increase. Increased it and gave it to her. The nurse on staff during that time was terrific, she really followed up on each new order and checked in with mom frequently to see that things were going satisfactorily. But Claire was still having the seizures. She was stiffening up and turning blue... dad and Claire's uncle and his family were there by then and Claire's parents sat and watched as if there were nothing they could do.
But there was something, and when you are in such a state, you don't always have your wits about you. Mom rang the nurses who brought in the new intern who just came on shift. Mom asked her... something had to be done... and she was wonderful. She ordered a new anti-seizure(ativan) med and it came fairly quickly... At 12:45pm, it was given directly into Claire's IV and worked within 5 minutes... Claire had one more bad seizure where her O2 level dipped to 0% while mom was changing her diaper. Then, the seizures stopped. Claire fell asleep. Her O2 levels went to 100%. Mom laid down and just watched the monitor. Exhaustion overwhelmed her, but she felt like she couldn't sleep... she didn't want to wake up again to find people gathered around Claire's crib again... but mom was content for the first time all day. She teased the new intern that the O2 monitor wasn't working because it had 100% on it, and mom felt that hadn't happened in a long while.
After mom felt the worse of the seizures were under control, she asked a lot of questions about the new anti-sz med. She found out that it is a 'one shot' deal, and shouldn't need it again. Eventually, Claire's regular med would level off and be good enough for her. That was the theory anyway.
Claire was moved over to Hospice house after being discharged from the hospital. With her oxygen levels still dipping low when she was off the oxygen, mom and Claire's uncle packed her up and drove her straight to the house. Claire's dad brought the bassinet from home and a few other things Claire needed like clean clothes and diapers, as hospice didn't have any things for babies.
The hospice nurse that visits Claire, met them and had everything waiting. Other nurses, family service coordinator, hospice volunteers and even the music therapist was there to welc11 month pix!ome Claire. Many were familiar faces to Claire and her family. The room was beautiful, it was like visiting Grandma. The bathroom was about as big as the entire hospital room they just left. Mom knew it was the best decision. They were settled in quickly and mom continued to work on Claire's eating. Mom felt like she was starting over. Like when Claire was a newborn brought home from the hospital. Only now, mom felt like Claire could learn. But she also felt, deep down, that the hospital 'broke' her.
When dad arrived, he said, 'where are the monitors?'. Mom said, 'There were none. They don't typically monitor at hospice and what good would it do us to have them going all the time?'... except mom would be up 24/7 watching them. Claire didn't have monitors at home, and she didn't plan to have them either. Evidently, there was a small gadget called a pulse-ox that the nurses let mom use off and on to test Claire's oxygen, but only when they were turning the oxygen down.
The decongestant kicked in and Claire was eating a drop at a time. As she would swallow one 'squirt', mom would squirt in more milk. Eventually, Claire's eyes appeared to get a bit brighter, of course that was right before bedtime, but mom didn't care, she was happy to see the formula was getting into her system... and giving her a little energy, tho it wasn't much. Claire finished about 2oz that evening and she went back to sleep. Claire started to actually drink from the bottle, before drifting off to sleep around 9:30pm. Mom layed in the bed Claire in her bassinet. Her arm across Claire and they were resting. A nurse came in around 10pm for one of Claire's meds. They gave it to her and mom showed the nurse how to use the habberman. Mom went to sleep around 10:30 as the nurse continued to feed Claire. Throughout the night mom heard the nurses coming and going and whispering about the adorable baby that had come to visit them. The nurse tried several times though out the night to feed Claire pedialyte and Claire drank about and oz or two. She was on an IV at the hospice house.

February 27  

Claire's second day in the hospital. She had no fever today and her weight is doing much better, up to about 9lbs 6oz. Perhaps she was dehydrated and the IVs helped her out there. She had a pretty good day, just trying to recover. She really wasn't eating today... maybe a few oz of pedialyte, but she didn't even want that. Mom thought it was partly a sore throat, and partly that she was congested, and couldn't drink and breathe at the same time. Mom asked for a decongestant for Claire, and was told several times that they didn't give them at the hospital. In Claire's case, it could act as a sedative and the intern didn't want to give her one. He said mom should just use saline in her nose and bulb syringe. Mom wasn't too happy about that. She felt that the decongestant would clear Claire up quickly and she would start eating again... and Claire wasn't eating... but she needed the calories to get better.
The hospice nurse and family service coordinator came by. During the hospice nurse's visit, she mentioned that the next time Claire needed 'observation', she should come to the hospice house. It would be much more comfortable there... evidently, you don't have to be on your last breath to stay there. She said that mom could get some rest as the nurses would watch Claire. The house also serves as a caregiver respite, giving some rest to mom as Claire is taken care of. It would also allow Claire's mom to have a little more control over her care... which mom felt she wasn't given.
There was no sleep to be had that night.

February 26

comfy!?Claire was up most of the night. Her fever seemed to hover around 100-101 until 3am, when it bounced up to 102.8. Mom was up taking her temps and keeping her comfortable. When Claire would get to sleep, she'd sleep maybe an hour and let out a loud cry, almost as if it were in her sleep... she would whimper for a moment or two and be back to sleep. That would leave mom feeling helpless, as she didn't want to wake her to cuddle her, but didn't know what was causing the cry. Mom thought it could be gas, or congestion - not breathing well, or constipation. Mom treated it all, but still got the cries.
In the morning, dad took the kids to school and mom woke Claire for a temp check, meds and feeding, if her temp wasn't too high. It was 102 at 9am, so mom gave her Advil and had to go to a meeting. Dad stayed home with instructions to give her pedialyte until her temp went down, and then start on the shakes... with prunes, to get the calories up. Dad also set up an appt with the ped for 2:30 today. When mom gave Claire her meds, she noticed when Claire coughed, some phlegm came up. Perhaps Claire is just trying to fight off a cold, or had a bad sore throat.
Claire didn't drink much for dad, only about 2 oz the entire morning. Then she went to sleep, mom let her.
Mom took her to her ped appt thinking she would get some antibiotics and go home. Before leaving mom took Claire's temp and it was fine, about 98 or 99. Claire's weight was down to 9lbs even. The dr listened to Claire's chest and decided, with the high fever, she should be observed... she would need a chest x-ray and some bloodwork, at the hospital, at least overnight, would be best for her. Mom told him she trusted his decision and the dr office had Claire registered by the time mom got there. Dad was busy, and couldn't be reached but mom left messages. He found out Claire was in the hospital and settled in before he knew anything.
She got an IV the same time they took blood, and had her chest x-rays. She was put on blow by oxygen as her O2 (oxygen) levels fluctuated a lot. Mom thinks that is probably normal for Claire, but has no monitor at home to know for sure. Her temp was 100.8 - not too bad. Mom thought it might be on the rise again.
Then back to her room. She didn't sleep well, and didn't eat well, but was eating some. During the night she had about 4oz of shake. Mom gave her bananas before she got there, knowing she loved them, and thinking she would worry about the constipation later.
The dr came in and said that she had a very very slight amount of pneumonia. So slight that the radiologist nearly missed it on the x-ray. He said they would give her an antibiotic, in case she also had strep (mom and dad believed she had a sore throat), or an ear infection (can't see in her ears since they are so small.) So the antibiotic of choice would help clear up anything else she may be having... and he would spare her the tests.
This isn't the same antibiotic that wiped it out before, but mom trusted that it would be the best route. Claire was up a few times during the night, but mom thinks they both got about 5 hours of sleep.

February 25  

Claire was up at 4am, eating. Then back to sleep around 5:30. She had her physical and music therapy and hospice visits. She did well with the pt, but as Hopsice and mt arrived, she woke from her nap to have a really high fever. Mom was amazed. Claire woke up crying, she also had a blanket on her and mom thought that was why she was so very hot. Mom took her temp, mostly because she felt Claire was constipated and thought it would help (she was and it did) but mom read the temp was 103.7 (rectally, that is 102.7 orally and 101.7 under her arm)! This was about 3:30pm.
Quickly mom got out the Advil and a cool washcloth. In hindsight, she should have taken her straight to the tub, but didn't want to give her too great of a chill, when she's that hot, even warm water would seem cold. Claire's temp came down to 101.3 in about 1 1/2 hours, but was up again at 8:30pm to 102.6(rectally)... so more Advil. Mom knew they'd all be in for a very long night.
The hospice nurse came by to check on Claire... said she looked really well, aside from her fever.
Mom decided to keep her comfortable through the night and call the dr in the morning if she wasn't responding quickly to the Advil and Tylenol.

February 24
49 weeks

Claire was up a couple times during the night, but quickly went back to sleep before mom could get herself out of bed... about 20-30 seconds... as if she just wanted to let off a loud noise to be sure mom wasn't in too deep of a sleep. Dad sleeps through most anything, like the other night when mom nudged him and when he finally woke up, he jumped. Claire's brother was standing next to him staring at him. Mom heard him come down the steps and into the room. Dad didn't. Oh the fun never ends at Claire's home!
Mom woke Claire with a gentle kiss on her cheek this morning. Put her straight into her bath, then meds and bottle. She drank her bottle down fairly quickly then dad whisked her off with the other kids to school - in the storm. Mom was trying to shut down the computers and the modem as the lightening was striking a little to close for comfort. Then off to work.

February 23  

Claire was up at 3am and finished 4oz of shake by 3:30am... and was ready to play. Mom was exhausted, but looking at that sweet little face, eyes wide open, well, mom wanted to play too... but thought better of it, so she put Claire on her chest and patted her back to try to get her to go to sleep. Claire didn't want to go to sleep, and eventually faded into dreamland round 5am.
She was up soon afterwards and crying for food. Claire's cries are getting louder and louder. It is kinda neat. Sometimes mom and dad just wonder where she gets her loud voice from, because all the books about T18 say she is suppose to have a weak cry.
Mom got Claire ready after she had another 4oz and some pedialyte and took her to daycare, then mom off to work.
Claire's pt (physical therapist) came to her daycare to give her a 'work out' and little Claire fell asleep shortly after she left. Her caregiver learned several new things to try with Claire, and that is an advantage of having pt there. She will still get pt on Wednesdays too at her home.
When Claire got home, she hung out in her swing for little while. She finished off her bottle from daycare which was about 2oz of bananas with some formula added. Mom gave her her meds around 6pm, a little early, and sure enough Claire fell asleep around 8pm. No bath, not even a diaper change, but mom thought it was best just to put her to bed.

February 22   Claire was up during the night to eat, and back down again soon afterwards.
She woke up with her new cry... it is louder than it used to be. She got dressed and went to church. Her uncle, aunt and cousins were there. One of her cousins came back to sit with Claire so she could hold her the whole time. Claire loved the attention and kept her eyes on her cousin most of the mass.
Mom was pretty tired all day, but had a cup of coffee after church and then got plenty of spring-cleaning done, starting with Claire's sister's room, and then mom and dad's bedroom. Dad cleaned with mom. It is so nice to have a clean home, even if not for too long... with so little 'free' time to really clean, they tend to just 'pick up' around the house a lot. Since the purchase of the Floor-Mate, mom has been doing more 'mopping'.
Claire was so good all day. Mom took frequent breaks from cleaning to go play with Claire, often moving her from blanket on the floor, to swing and mom's lap for bicycles and other exercises. Claire was awake most of the day, and went to sleep around 6:30pm on the blanket on the floor, with another blanked wrapped around her. The windows were open all day and a beautiful cool breeze - about 70 degrees - came through the house. Claire was very comfortable wrapped up.
Around 8pm, mom decided to wake Claire as she had fallen asleep without her meds. Hated to do it, but had to. Then fed Claire more and she went to sleep on mom's chest while mom watched a little tv, and eventually went to sleep herself.
February 21  

Claire woke up hungry. Mom fed her and got her and her sister ready for a birthday party that her sister was invited to. Afterwards, they zipped across town to watch Claire's brother play basketball and then home.
om and dad cleaned up for friends coming over in the evening for dinner. They have 3 children also and the kids all played together all night. It is always nice having company. Dad made lasagna.
Claire was in her swing most of the night drinking and from her bottle. She threw up once, but not too much and quickly re-joined the party after a clean up.
Later, she wasn't really tired, so mom fed her and dad watched her until about 1am when the both fell asleep.

February 20   Claire was up at midnight and then again at 2:30am... and again at 5am.
Mom had an 8am meeting with little sleep, but such is life.
Dad took Claire to daycare. Claire had occupational therapy with her favorite OC. Claire is so lucky to get on her schedule! Therapy went well, they were discussing a visit to the orthopedic dr to get a seat insert made to keep Claire's back straighter. It may not fix it's growing curve, but could keep it from getting worse. Afterwards, mom zipped Claire over to her photo shoot. As always, they got some really nice pix (and used her usual coupons) to document Claire's 11th month.
February 19  

Claire was up at 4:30am and didn't go back to sleep until around 6am. Mom was up with her and quite exhausted when 7am came around.
Dad took Claire to daycare and mom went to work after answering emails.
Claire's site was going through major problems this week. Last Wednesday, mom upgraded the site, it was suppose to take 24-48 hours for the upgrade to complete and allow mom to update the site. One week later, it was available for updated. Mom sends her apologies to everyone for not getting their Claire fixes... she will make it up to everyone wit more pix very soon.
After work today, mom took Claire and her sister to get her sister's hair cut at Cost Cutters. There were only 2 ladies signed in ahead of them so mom figured it wouldn't bee too long of a wait. A lady who signed in after them, a friend of one of the hair cutters, was allowed to go before them. Then they were told it would be another 20 minute wait after they already waited 40 minutes. Claire was very well behaved, not making a peep and drinking her bottle like a sweet, fat baby. Mom was very upset. The hair cutter told mom that the lady had called ahead and that was why she was called first. But mom knew better, since the lady signed in after mom and the lady's name appeared after hers. Mom walked out after telling the lady that it wasn't right, and telling her that an hour wait was just too long when there was only two ladies signed in before mom did (one only took 10 minutes).... whew... mom is still mad... she doesn't like fibs either... and isn't afraid to 'call them on it' when they fib. Life is just too short to deal with mean people.
Claire went to bed at 9:30pm and mom went to bed soon after.

February 18   Claire with her hospice nurseClaire was up at 4am and back to sleep soon after with a little pedialyte from mom. Mom let her sleep in this morning as dad asked, "Doesn't Claire have a job or something she needs to get up and go to?". Mom laughed and said, "her job is in the wee hours of the morning... when she's awake... and it is the job of keeping us up".... heheheh!
She was visited by music therapy today, she slept through part and cried during the other part. Afterwards she was visited by the hospice nurse who was a 'fill in' but had visted before. Claire loves having new faces to look at.
Mom noticed some new faces that Claire was making today. One face looked like she swallowed a lemon. One face was the usual BM goin into diaper look. Another face she would gaze into mom's eyes and lift one eyebrow, then lower it and lift the other... as if she was straining to read mom's mind... or maybe reading it and was being enlightened.
Claire hung out in her swing in the evening and enjoyed her shake with applesauce in it. It was a long busy day for the little peanut.
Her daddy isn't feeling too well and is laying down this evening. He probably just needs one good night sleep.
Claire went to bed at 10pm. She threw up again after her medicine, so mom had to give her a little more and she went to sleep shortly after her bottle.
February 17
48 weeks

9lbs 12oz

Dad woke mom up at 2am, evidently he'd been up with her for a long while and was too exhausted, so mom took over. That dad is such a good guy.
Mom got Claire up and Dad took her to the pediatric cardiologist (ped card) for her check up. She goes every 6 months. Dad told mom that they did an EKG and said that, given her weight had increased, she could be off one of her heart meds and soon off the other one. Dad told mom that she weighed in at - get this - 9lbs 12oz!! That is almost a lb and a half from her last weigh in with her pneumonia only a few weeks ago!!
The weight gain, along with the news she will be off two meds soon, made for a BANNER day for Miss Claire!! ... mom and dad too!
Claire came home hungry and had about 3oz of shake, only this time, she had sweet potatoes instead of bananas... she gulped it down and wanted more. Mom made her a shake with bananas. After another few oz and a nice bath, she threw it up... must be her overflow valve - it could also be that nasty medicine she takes for seizures - it tends to make her gag sometimes. She just kept eating and wanting more, as if she was starving, and of course mom wanted to feed her. After Claire's mess, mom started over with another bath, new pajamas, more shake until the little peanut finally fell asleep on mom's lap... around 8:30pm.

February 16   Claire slept through the night last night from 10pm until 8am when mom woke her. Her daycare provider has requested President's Day off, so mom is home with Claire and getting some work done. Claire had 6oz of shake and went back to sleep afterwards in her swing... she's a tired bear. Mom is getting caught up on her emails from the weekend and a new project at work that she is really excited about.
Claire has been so good for mom all day. In the evening, she ate too much and threw up some. Dad took over so mom could get more work done, and he and Claire watched tv together after mom gave her a bath. Dad put Claire to bed at 9:30pm, but she was up soon after mom went to sleep.
February 15   Claire slept until 3am and was hungry. Mom fed her about 3oz of shake and she went back to sleep around 4am. Dad let mom sleep in and took Claire to see grandma in the kitchen when Claire woke up. What a sweet daddy Claire has!
She enjoyed being spoiled all day as she was passed around between aunts, uncles, cousins and grandparents. Every now they would put her down to let her sleep. She did really well on the 5 hour drive back home from Grandmas, sleeping most of the way, which kinda had mom worried about her sleeping at night... but she decided it was worth it for dad to have a peaceful drive if mom had to stay up and feed Claire all night.
Getting home around 9pm, the family was exhausted and kids went to bed. Mom changed Claire's diaper, fed her a few ounces of shake along with her meds and Claire as asleep too. Mom went to bed shortly after checking mail, helping dad with some work and researching a businees project she needs to get done quickly.
February 14   Claire slept until morning and drank well all day. She was spoiled by her family and always had a bottle in her mouth, sometimes even when she was sleeping. Grandma's job to fatten her up, so, whatever it takes. ;o)
Claire's mom, brother and sister went to the beach. It was beautiful... little wind and lots of warm sand (but not hot)... Claire hung out under the umbrella with her auntie while Claire's sister and brother played with cousins in the surf, building sandcastles and dodging waves.
Claire came home and slept for a few hours, like her mom and sister. The fresh air knocked them all out. It was a nice change from the cold rain they had been getting at home. Claire went to bed around 11pm, and mom was right behind her.
February 13   Claire slept through the night last night. Mom let her sleep in this morning so she can rest for her sleep deprivation before her ABR (hearing) test this afternoon. The Audiologist will fit her for the hearing aid, then she will see ENT (Ear, nose, throat) dr for a checkup.
Shortly after Claire's appt, mom started packing to go visit Grandma and Grandpa. It is Grandpa's 81st birthday, and plans were to celebrate Claire's brother's 10th birthday too while visiting. The family left at 8pm and it rained for the first 2 hours of the 4 1/2-5 hour drive. Dad was tired and mom took over the driving in the clear... it was all highway travel, which is nice driving and the roads were pretty clear of traffic.
The family arrived at Grandma's around 1am and stayed up talking until about 3am with the folks, while Grandma worked her charms to get Claire to sleep. Eventually, mom just put her in her bed and her exhaustion must have just caught up with her.
February 12   Claire was up at 3am and didn't go back to sleep until around 7am. Mom was up with her until around 5:30am, then dad took over so mom could get about an hour worth of sleep before going to work.
She went to daycare and had a fine day, then home to hang out with mom and watch the kids run around the house. Mom wonders what it will be like when she can hear them too. Claire skipped her bath and went to bed at 9pm.
February 11
11 months old!
  Claire was up at 10:30pm and then went back to sleep around 2:20am. Mom let her sleep in as she had appointments today and didn't need to get up for school.
She saw her Occupational Therapist and her hospice care family service coordinator. They wore her out so she had a nice nap in the evening.