Claire's Journal -- 25th Month
April 10   She drank from the 2 oz bottle and held it for a little bit, but either her arm gets tired, or she gets bored with the whole idea. After breakfast, it was off to church. Daddy changed her diaper and her clothes while mom finished getting ready for mass.
"Holding my bottle... with mom's help" Claire was a doll in church. Once they got there, mom put on her shoes, bib and bow and started feeding her again. Eventually, she was full and decided to start jabbering. Mom switched her position a few times to get her to quiet down, but Claire had to finish saying what she wanted to say... and it was quite loud, but cute.
She eventually fell asleep and mom gave her to dad and he held her the rest of church. They enjoyed a pancake breakfast after church and then home for Claire and big sister to have naps. After naps, and lots more shake, the family packed up and went to Claire's aunt and uncle's home.
Claire's uncle's birthday is next week, so the family gave him a early birthday present, had dinner and cake to celebrate. It was a very fun night, and mom enjoyed not having to cook. Claire wanted to sleep once home, but mom needed to give her meds and more food. Then off to sleepyland... around 10pm.
April 9


"just keep trying..."Claire had a fun day. Mostly eating and sleeping.
Claire is working on holding her bottle. Mom puts it in her hand and wraps her thumbs round the bottom of the 2oz plastic bottle, and holding only Claire's elbows, Claire pulls it towards her mouth and starts drinking. It is the cutes thing to see! Don't worry, mom has some of it on video! Pix coming soon.
Dad had a lot of work to do today, so he was in and out all day. Claire's brother was bored most of the day (according to him) and Claire's sister was trying to clean her room, and tho her intentions were good, she ended up playing more and messing it up more... so cleaning her room has a whole new meaning around the house these days. In the evening, a friend of daddy's came over and the family had steak for dinner. It was such a nice evening, the family played out in the back yard and found a vine to play on (like a trapeze) while mom and Claire hung out inside with the windows wide open and the cool spring breeze blowing through the home. Mom worked on cleaning Claire's room too, but with much distraction.
Grandpa called on the computer and they tested out his new webcam he got for his birthday from Claire's family. He loves it, and they love seeing him too. As the night got late, Claire settled down and went to bed fairly late.

April 8


Claire was up just before 4am.. she started with a little fuss, then got louder. Mom realized it was almost time for Pope John Paul II's funeral to begin, so she got the bottle ready and turned on the tv while she fed Claire. Dad was trying to sleep, but eventually woke up and put on his glasses, then listed to a couple readings and couldn't stay awake for the homily, especially since the Italian speaker and the American translator were talking equally loudly, and it was frustrating... not to mention Claire's oxygen machine, not exactly silent. Dad eventually went back to bed and Claire was ready to start talking during the homily, so mom had to try to hush her (moving her around, trying to feed her more) so she could hear the words. Everyone was back to sleep by 5am, and up again by 6am to get ready for work and school.
Mom got ready and then woke Claire up for her bath and bottle. She guzzled down 4oz before she got to daycare. She's been putting her hands in the air, as if reaching for the bottle.. .maybe.
Claire had a good day and drank well. She looks like she's putting on some weight.

April 7


Claire and her big sis!"Uh... what do you want me to say?"Claire slept well last night and mom had to wake her in the morning for her bottle. Not time for a bath this morning. Dad took her to her audiology appt and got her new ear piece, so mom with put it on over the weekend so Claire can use her hearing aid again. Mom forgot to ask dad to take the hearing aid with him when he took Claire to the appt... oops. Mom was just happy that he could get Claire to the appt and pick up the hearing piece... and get her back to daycare. Claire ate really well, even her daycare provider said she guzzled down 8 oz of shake quickly this afternoon.
After daycare, Claire got home and she and mom did some PT, they tried out the new stroller again and played and ate. Then mom put dinner together and after dinner tried to get the kids off to bed at a reasonable time... hasn't been to easy after the time change, it is now light at 8pm, bedtime. whew. Just before the kids baths, the water guy came by and let some pressure out of the water tank, as it had filled with air and the family was getting yuky water randomly... mom let the water run a lot to get the air and rust out of the lines... it looks much better now.

April 6


Claire had a good night and and even better day.
She went to PT at noon, and she did some nice things. She is learning to put some pressure on her legs and strengthen them. Mom got in on the act today as Claire's therapist let mom do some of the work with Claire so they can work on leg strengthening at home. After PT, was OT. Mom brought a small 2oz bottle (from when Claire was in NICU) to the therapy today. She figured it was light enough that Claire could use it to learn to hold her bottle. Her OT helped her learn and it was so fun to watch. Claire would hold it for 5 or 10 seconds at a time... a couple times... mom is hopeful that in the coming months, Claire will learn to hold it herself.
After therapy, Claire went for a fitting for her new stoller. It is a special stroller where everything supports her (head, under arms, legs) and everything is adjustable. She fell asleep during the fitting... in the chair... guess that is a good sign :o)
Once the fitting was over (after 2 hours as they made the adjustments there) and after mom was able to get it in her car, she picked up Claire's sibs and home they went to work on homework, etc. Claire was in her chair for a bit... the Claire Chair... and mom put the table on it so she could have a couple toys to look at and see if she would like to play with them. Mom will do this every night with different toys and home that Claire will find one that she loves enough to make the effort to play with... right now, she could reach out and grab one, but they just don't seem to interest her like her mom's nose and necklace. ;o)
Claire had a nice night and drank pretty well today, maybe 20 oz. With so much going on, mom had to cancel Music Therapy, but she should get it on Friday.

April 5


Claire was up around 4am, and didn't really want to go back to sleep. Mom gave her some mylacon for gas, then fixed her a bottle and eventually she settled down.
Mom woke her in the morning, she was so exhausted (as was mom) and got a nice warm bath, which she loved, she smiled for her daddy when she got out as mom dried her hair with a towel. She drank an oz or two, and was off to daycare for the day. Mom had a meeting, so she wasn't able to lolly-gag around and had to rush off after dropping off little Claire.

April 4


Claire slept through the rest of the night once Dad got her to bed.
In the morning, mom woke her for breakfast and meds... she seemed really hungry and alert once she woke up. She drank 4oz and off to daycare. Mom picked her up a little later for her noon PT and at her daycare Claire drank the better part of a 4oz bottle. Off to PT where she drank another 4oz... and talking talking talking. Her therapist couldn't get over how much Claire wanted to communicate with her, and her therapist would take back, giving Claire more reason to continue on! Claire had a good PT session. She layed on her tummy with a towel rolled up under her arms/shoulders and worked on getting her head mid-line and up to bring her back straighter. Claire also did some rolling, where the therapist only moved her feet, and Claire did the rest of the work... she is always full of smiles when she's rolling! She worked on sitting up straight too.
Mom worked on appts for getting her new chair to keep her back straight and help her sit better... also to get her hearing aid adjusted. Mom also found out that the insurance approved PT and OT through the end of May, so she made the appts for that... whew!
Mom is thinking she's going to have to change the website around a bit, Claire isn't really a baby anymore... she's more of a toddler, without the 'toddling'... but not really a baby.
Claire drank well at daycare, about 14oz all morning and into the afternoon. In the evening mom took her outside for a bit to watch the kids play, then back inside where Claire spoke loudly from her swing to mom while mom made dinner. After dinner, Claire started to fall asleep while swinging, then during her dinner, so mom put her down without a bath tonight. A friend was over visiting in the evening and mom got to bed late. Claire was in bed around 10pm.

April 3


Claire slept through the night.. was up for meds and breakfast, and slept through mass too. She was such a good baby, and mom let her stay in her carseat through mass so that she could continue sleeping... didn't even unbuckle her.
The family ran errands with dad, then back home to find most of the day was gone, and daddy's band was singing at a Goodwill benefit, so he left a couple hours after they got home, and somewhere in there mom fed Claire and put her back to sleep, and took a little nap herself... only to wake up in time to get dinner ready, kids bathed and ready for bed herself just before dad got home. Claire had close to 20oz today... she slept much of the day too. Claire was up again close to 11pm. Dad took her out of the room and fed her a couple oz and returned her to her bed once she settled back down. She went right back to sleep.

April 2


Claire slept through the night. Mom did too, and they both slept in longer than they had a right to. Claire got her meds a little later than usual because of it tho. She ate okay. Dad had more real estate to sell in the morning... contracts to be signed and houses to show. Mom and Claire and the kids hung out at home. Mom spent most of the day cleaning and thinking of all the things she needed to be doing.. got a bit overwhelmed and decided to make chocolate chip cookies... that's always great comfort food for an overwhelmed mom... the house was basically clean, so why not.
When dad go home, the family decided to have friends over for dinner. It was a nice evening, they have three kids and are always so much fun to have over! The food was good (dad's lasagna), and cookies for dessert... yum!
Claire was in bed around 11pm, and the kids before midnight, and mom realized with the time change tonight, there will be a lot of naps happening tomorrow! Claire had just over 20oz today. Mom is still adding vegetable and olive oil to Claire's shakes for a little added fat.

April 1


Claire slept through the night. Mom had to wake her again... it is so hard to do as she is so adorable when she sleeps. She was up for a face cleaning (her heat rash is coming back), meds, change of clothes (still sweats some) and diaper and breakfast... then off to daycare.
Big storms today, tornado watches like yesterday and possible hail.

March 31


Claire slept through the night. Mom had to wake her up, her nose was a little congested so mom gave her a few squirts of saling (little noses) spray. She had a nice bath and a few ounces of shake, then off to daycare.
Claire had PT today. Her daddy took her. Her regulare therapist is back from vacation and was very pleased with everything Claire had accomplished today.
She was holding a rattle and bringing it to her mouth, and playing with her toes.
Mom picked her up from daycare and they were watching the rain come down once they got home. Claire ate really well today, close to 24 oz of shake. After mom put her to bed, a transformer blew and the electricity went out... it came back on, then off again within 1 minute. Claire's O2 machine was on (remember she's on blowby at night) and it made has a nice loud alarm that lets you know it isn't working... and in the darkness, mom was able to grab a flashlight and turn it on... it does have some battery in it, as the alarm was going off and there was a light on the machine (pretty cool!). The electricity was off for about an hour, and the house was cool as the temp outside was probably in the 60's or so. Everyone just went to sleep... Claire woke up about 5 minutes after the power had gone off (the second time) and was crying.. as if she was scared. Mom turned on the flashlight and faced it towards the ceiling and it lit the room up well... she fed Claire the rest of the bottle she had on the nightstand and Claire snuggled with mom and went back to sleep... good baby.

"Awe Man!"  "Weeee... We're rollin'!"  Working on sitting up.
March 30


Heeee heee!Claire slept through the night.
She had such a nice day... eating and sleeping and eating. At 9am, her hospice coordinatore came to visit and had a nice long discussion with mom. After eating and napping more, she was off to OT and had some sweet potatoes and did lots of assisted rolling, and OH the smiles... Claire loves rolling!
After OT came Music Therapy, tho they didn't get much of that in when the Hospice nurse came by and visited too. Claire weighed in at a whopping 13lbs 12 1/2 oz. Mom is thinking that is the most she's weighed yet! She's been eating very well and sleeping very well tho once a day doing her cough, cough, gag, thow up... it is getting down to a minimum.
Claire showed a sign of a slight seizure, but it was so slight mom is going to try and not worry about it... but keep her eyes on Claire all the same... it was time for her meds anyway.
In the evening, mom gave her meds a little early in hopes of everyone getting to bed earlier than usual. No more signs of a seizure tonight.

March 27


sweaty babyClaire was up at 5:30am... not because she was excited that the Easter Bunny had come to see her, but because mom woke her up for sunrise mass. It was a beautiful mass, mom wished she had her camera with her, mass on the beach is always nice.
Claire had a fun day, she slept much of it and ate pretty well.. as she had all weekend.
The family opted to trek back home tomorrow and avoid much traffic today on the interstate. Kids are off tomorrow and mom took leave too.
Claire traveled well, drank some and slept much.

March 23


happy grrl!A busy day today. Mom's first day of annual leave as the family heads to Grandma (and Grandpa)'s home for Easter weekend. The kids are excited as the family hasn't visited since Christmas holidays.
Mom spent the early part of the day cleaning and packing and later in the day finishing up as dad had an appt at 5pm that was cancelled, and it was fortunate so he could help mom finish loading the car, but didn't make much difference in the ETD. The kids traveled great, sleeping much of the trip and Claire slept for all of it.

March 21


Claire slept through the night. She was coughing a bunch during the night and mom turned off the ceiling fan and covered her a little better. When mom checked on her in the morning, she was soaked with sweat. Mom woke her with meds and a nice warm bubble bath. Then food and off to daycare. Claire drank almost 4 oz this morning. Her tummy looked normal, not too full, so she probably digested all that was in there overnight.

March 20


Claire slept through the night. She was up for church this morning. Mom is a little nervous about taking her to church this time of year... it is always so full and with all the colds and flu going around, it makes mom nervous. But the spirit needs to be replenished as well, so off they go. It was Palm Sunday today. All Catholics know it is the longest mass of the year with the lengthy gospel reading about the crucifixion of Jesus. This year, before the priest came down the aisle, he read a short Gospel, and as everything was quiet... Claire let out a cough, cough, gag, and puke. And all heads turned to Claire, as the family was in the middle of the church facing the back of the church (where the priest was) and mom hurried to distract Claire so she would keep her food down. Dad had not yet sat down and was standing at the back of the church. Mom was comforted to know that he didn't hear Claire (to mom, her gagging was really loud)... so hopefully fewer people were distracted by it than what mom thought.
After church, mom worked to get more food in Claire. She hasn't been eating well, so mom was making the shakes thinner so Claire wouldn't need to work as hard to drink them. She just seems indifferent sometimes. When Claire is hungry, she will slurp down an ounce rather quickly... but then seem so full, so lately mom has been squirting more in her mouth, and she is pretty good about swallowing it, up to a point where she has about 3oz and appears full.
Claire may have had 16oz today. Including 2oz of Pedialyte as her tummy looks very full and may be constipated.
Claire ate, slept, ate, and slept most of the day.
In the evening, mom was bothering her again with that ol' bottle... eventually she just pretended to fall asleep, so after 4oz, mom put her to bed.
It seems that Claire would sleep the entire day away if she was allowed. She hasn't been waking up to eat, mom has had to wake her on most mornings, and while she appears hungry, she drinks an oz or two and pretty much could go back to sleep. This makes it easy to get her to sleep at night, and also helps her to sleep through the night... but mom is very concerned that she is getting too few calories. Mom will blame it on the meds again.

March 19


Claire slept through the night. She still isn't eating great, maybe 20 oz today total and she needs about 24oz per day.

March 18


Claire slept through the night. Her Hospice nurse went by to see her at daycare today as mom couldn't meet with her today.
Here is what her nurse had to say:

ClaireBear was swinging away when I went to see her.
She weighed in at 13lbs. 4oz.
Her upper lobes have some congestion (loose -- which is good). Lower lobes are clear.
Color is good and she had a big smile for me. I recommend giving her some extra fluids to break up congestion. Nebulizer treatment in the evening would be beneficial.
Claire is so very lucky to have such a terrific nurse!

About 16 oz today.

March 17


Happy St. Patrick's Day everyone!
Claire had a really good day. She had on a green outfit, but she spit up all over it, so mom put on another one... when you're Irish, you gotta have more than one green outfit... and Claire has three! She also had a shamrock sticker on her carseat and later got some green beads for her carseat... she loves looking at them.
She and mom delivered some shamrock cookies to the kids' school in the morning for their classes to snack on, and while it was the last day of school before Spring Break, they also enjoyed Easter Egg Hunts, and a fun day! But for Claire, it was her last RSV shot for the season. When she got the shot she cried for a minute or two... much longer than usual, even dad was surprised!
In the evening, Claire relaxed with mom and they both went to bed early.

    brother getting smiles!  how is this 'pose' ?
March 16


Claire had occupational therapy today and did well. She really wants to grab things and pull them to her mouth; some coordination is still needed there.

March 15


Claire had physical therapy today and did well - her daddy took her. Later in the evening, mom picked up the kids early from school and got them dressed for family pictures. They came out pretty well, mom was very pleased with the sitting.

    sweet pea  my brother and me!
March 14


hey, you takin another pix!Claire slept through the night. She's been sleeping a lot, which leads mom to believe it is the anti-seizure med that is too strong. So mom took it upon herself to give her a smaller dosage until the second part of the dosage could be picked up (this morning). Mom took a dosage from the new bottle for her afternoon dose and will use that bottle for further dosing.
Claire was starting to play some with her new toy, but then fell asleep... guess the morning bath and med was too much for her.
Mom took down the birthday guestbook. She felt like everyone who wanted to sign it already did so. If you still want to sign it, email Claire and she'll send you a link. Mom may put another one up for general messages in the near future.

March 13


Claire slept through the night.
She woke up sweaty. The ceiling fan at night was drying mom out and the humidifier wasn't working (evidently) so mom decided to just lower the temp in the home and leave the fan off, but guess it wasn't low enough for Baire.
Mom woke her, sponged her down, gave her meds and got her in an outfit that was cooler.
She tried to sleep during church, but never seemed to get comfortable. After church the family ran errands, and that was a chance for her to be in her carseat and sleeping much of the time.. tho fighting sleep. At home, mom and Claire took a nap and that pretty much ate up most of the day for them. Claire's dad put her toy together for her so she could play a little before her nap, but her big sister had more fun with it than Claire did. It will take a while until Claire gets the idea of just how much fun she is going to have. Mom is hopeful it will offer much exercise and hand-eye coordination... and foot coordination for Claire.
It was pretty late when mom finished feeding Claire, so she opted to give her her bath in the morning. Claire didn't drink a lot today, she was overall lethargic and not hungry. Mom may have gotten 16-20 oz in her today.

March 12


Claire and her neighborHere it is... the day of Claire's big 2nd Birthday Partay!
She isn't too excited... or at least, she's very tired as she woke up for meds and fell asleep before mom got her breakfast ready. Mom was unable to awaken her much before 2pm to eat... mom was not too happy about that. She feels the meds are too strong (it was from the bottom of the bottle at the pharmacy afterall) and too much for Claire... so she will likely cut down on the amount until she finds a good point where Claire doesn't fall asleep for hours after each dose.
The party was big fun and mom would like to thank everyone who came (and those who wanted to) for sharing in Claire's special celebration. Her family is very birthday cake!proud of her and how tough she is for such a small person. She has made much progress over the last year including overcoming bouts with pneumonia and bronchitis.. and learning to open her hands and hold things in them! Gooo Grrl!
Claire was up for a very long time, and after everyone left the party, mom fed her a tummy full and she fell asleep once she got to the dark bedroom and hit the bed. Sweet Pea.

March 11
24 months

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She was up just before 4am this morning... all the excitement, guess she just couldn't sleep. Mom fixed her a bottle and she drank a couple ounces and drifted back to sleep on mom's shoulder. Back to her bed she went.
When morning came, mom gently woke her up with lots of kisses, then picked her up and bounced her around softly so she could get that wonderful smile starting off the day. Claire started her day with meds and some sweet potato shake. YUM.
Mom spent a little more time with her this morning than usual... after all, everyone's kisses and hugs had to be delivered to the little Sweet Pea! She drank only a few ounces... she was a bit too excited to eat this morning.
Claire and Dad's friend... "I think he likes me"She was off to daycare where her caregiver just started baking a birthday cake for Claire.
What a milestone!
Claire had a fun day at daycare and in the evening a friend brought by a beautiful cake and Claire had her presents and cake in the evening and a friend over to help celebrate. Mom got video of everyone singing to her and didn't get video of dad dropping the cake. It was salvagable and most delicious all the same. Her family got her a new toy that she can lay down and kick and lights go off... try to get pix once it is put together and she gets the hang of it... sounds like a perfect gift for the girl who likes to kick kick kick!
She ate about 5oz of cereal (with fruit) and had a bath before her party, and fell asleep after her party... close to 10:30pm.
Mom is thinking of taking down the guestbook on Sunday night... so it will just be a birthday book, and bring up another one on the next special occasion... or just randomly.

    We're here!!  ...and full of energy!!My friend CinderellaGot our bug eye's on! "My Aunt and Snow White and Me!!"Sleeping Beauty, or Briar Rose, or Princess Aurora, she answers to them all! Kisses from MickeyMickey and the kids Alice, my friendClaire and her big SisEnjoying the steam boat ride Talking to GrandmaMe and Princess JasmineGot to see Cinderella again! Me and Pocahontas Me and the Little Mermaid, ArielChip and Dale are big fun! Claire on Safari Expedition -- looking for some elephantsKickin back and takin a breakClaire ridin the monorailBig Brother pushing Claire around.