This morning, Claire drank 5oz at 5:30am after taking her meds. She had another 15 oz by 5:30pm and mom hadn't noticed a seizure. Claire seems to be on the mend. Mom put her on oxygen last night to help her use her energy to get better, and not for breathing. she's been a little congested, but mom has been giving her some decongestant to help with that. In the evening she had another 8oz and dad took over until sometime after midnight. She slept from then on.

Claire slept through the night. Mom woke her for meds, for breakfast and to share her big sister's birthday... big sis is 5 today and tied her shoes for the first time this morning!! Mom never saw a happier, prouder face as when this feat was achieved!
Claire had about 3oz of shake, then about 30 minutes after her meds, she had a seizure, and then fell back to sleep. Those darn things just wipe her out!! Dad woke her for a bath, and her caregiver offered to come and pick her up. It is never a problem to drop off Claire and her sister, especially since Claire is right on the way to dropping off her sister at camp, but today mom had only a small pick up truck (her car is in the shop and it still doesn't feel very well), and both car seats wouldn't fit, so it was a blessing that she offered. Just before her caregiver arrived, as mom was feeding her, she had another seizure. It is very upsetting to mom to see.
Mom took Claire's sock off her hand as she felt that it was more important for Claire to have her thumb and be happy, than it was for her thumb to get better. Besides, she was trying to put the sock in her mouth, and it was pretty wet anyway.
Claire had a possible seizure at daycare, but finished 6oz of shake.
Claire had a dr appt today at 11:45am and dad took her as mom has a busy day today at work. In the waiting room, she had another seizure.
At her appt, dad called mom so she could talk to the dr too. The dr took a blood sugar test to test for diabetes to see if that could be causing her seizures. He sent dad and Claire to get chest xrays as her lungs sounded 'gunky' again, and increased her anti-seizure dosage by a very small amount. He will also write her a new prescription for anti-seizure and mom will get it filled asap to keep extras on-hand. Mom had difficulty getting Claire's anti-s meds filled before vacation, and got a major run-around... so keeping extra dosages are just smart.
Her weight was 10lbs 6oz today... she dropped by over a pound since her last visit (from 11lbs-11oz), and from 11-4 to 10-6 in the past two days. Mom has her work cut out for her this weekend, fattening up that baby! The last two days have been spent squirting food into Claire's mouth, and the dr said he noticed she was lethargic and low tone. Let's hope this is something that more food and antibiotics can cure. Diabetes testing came back at 112, and since she is 'sick' dr said it was 'normal'.
The chest xrays seem to be consistent with last April when she had her upper right lobe showing some congestion (no pneum tho). Dr said to just keep an eye on her for a fever and not start antib's now, as it could make it more difficult to help her if it developes into something more serious.
In the evening, friends gathered to celebrate Claire's sister's birthday. It was a big time as one friend brought a real wedding dress and a real bridesmaid dress. She cut the bottom of the bridesmaid dress and Claire's sister wouldn't take it off for anything... not even to eat spaghetti dinner!
Claire had a few seizures during the night and mom gave her an early dose of meds around 6pm, and at 10pm gave her about a 1/4 dose to try to nip them. Mom changed bottles of the anti-seizure meds and started using a brand new one from the latest prescription, hoping that maybe just the bottom of the bottle had some bad 'ratios' in it. Mom shakes it every time, but she's starting to think that when they get to the bottom of the bottle, Claire often has problems, and sometimes it is best to just throw it out and start a new bottle... certainly that is better than increasing the dosage. Especially if Claire's 'levels' are fine.

She was trying to sleep through the night, but was awake for most of it. Some from congestion, and some from 'dry heaves'... as if she were trying to throw up, but had nothing in her tummy. Mom was squirting pedialyte (with bananas for calories and flavor) into her mouth and she was swallowing it ... it was a very slow process to be sure she would keep it down. In the morning, she had about 3oz.
Claire had a few mild seizures today, hardly noticable, but still there. Bloodwork results came back and there was no sign of any problems. Her levels of seizure meds were fine and no signs of anything else. This is very odd to mom, because if her levels are fine, what do we do about the seizures?
Dad took over as mom went to work and he fed her another 3oz. When mom got home in the afternoon, she fed Claire another 2oz, plus another 5oz by evening. Just before bed, Claire drank 2oz of shake and fell asleep... she's such a tired 'baire'.

She was up once at 3am. She drank an ounce and mom put her back to sleep as she seemed disinterested, then mom heard her 'eating' her hand so mom picked her up to give her more... after another ounce, Claire stopped drinking... she coughed twice, then sneezed and went into a seizure. Mom gave her her seizure medicine right after, only a couple hours early, and it was about 3:30am. Shortly after the meds and a few more sips of shake, Claire went back to sleep for the rest of the morning.
She was up after mom's shower and drank 6oz. Then she was visited by Music Therapy and the Hospice nurse came by to see her and weigh her. She weighed in at a mere 11lbs 4oz. Mom thought for sure she had gaines so much weight, afterall, isn't that what all women do on vacation?
Mom had a call into the dr about Claire's seizures, and they returned the call as the Hospice nurse was visiting, so mom gave them the weight too.
The dr suggested getting some bloodwork done on Claire. Mom had her all ready to go and got halfway down the road... and car troubles. So much for mom's little reliable car, well it is over 10 years old, but still cute as a button. Mom called dad, as she had gotten it back to the house, and Claire will have to wait for dad to get out of his meeting.
Whew, what a day.

Claire's rash on her face may have cleared up, but now it is on her hands. She is constantly putting her right thumb in her mouth, making it worse, so mom put a sock on her right hand. Claire is not very happy about that at all! But the thumb is staying cleaner and drier.

Claire is back from a nice vacation at Grandmas. She slept for much of the drive and still throwing up with coughs.

Her rash looks good today. She was up at 4am and back to sleep until after mom went to church. dad baby sat. No pool time or beach. just laid back in the cool air conditioning. Enjoyed fireworks at uncles' home and everyone held Claire. Aunt fed her 8oz in the evening and bed by 11pm. She is spitting up some, usually after coughing.

Claire had some pool time while visiting grandma for the week, a rash bad, and she slept through the night each night. Probably all that pool time, tho some nights she went to bed later than others, most nights she was in bed at 10:30 or 11pm and up at around 7:30am. Claire did some shopping and enjoyed a few lunches 'out', tho her rash was pretty bad during most of her visit.
She slept through the night. Grandpa fixed up a fan to blow right on Claire and it seemed to really help her rash. Mom put some lotrimin on it and she also tried just wiping her face (air temp water with a drop of baby soap using a paper towel) frequently. Also some fresh Aloe from Grandma's plants. Mom tried just about everything! Finally her rash seems to be looking a little better. Mom is convinced it is a heat rash, irritated by the thrush from Claire's mouth... so it seems like a sort of a heat/yeast/moisture thing.

Claire arrives at grandmas after a nice day with family. She still has a rash and mom is still trying a little dab of anything to see if it will work.

Claire slept until 1:30am. She was up and hungry, and mom figured that would happen. Claire drank 1oz and went back to bed and to sleep. She slept until 7:30am and was up for getting meds and daycare, not to mention a nice sponge bath, then off to daycare after drinking 3oz of applesauce shake.
Claire was trying so hard to roll over tonight, but she wore herself out. Maybe tomorrow... she just needs to learn what to do with that extra hand... the one that she is trying to roll over onto.
Mom finally got some pix of Claire and is eagerly awaiting the new ones from her last photoshoot at JCP.
Claire did the nap thing in the evening and then was up briefly for a bath and a bit of dinner, then back to sleep for the night.

Claire slept through the night. She didn't get up until 5:30am and was hungry. Mom gave her meds soon after and they both tried to go back to sleep, but it was such a busy morning that they didn't.
Claire had a visit from Children's home society to get her splints, but they were a little too big. Also, they were suppose to support her thumb AND index finger, but only had a hole for the thumb, and it was agreed that that wasn't the purpose of the splints, so mom set up another appointment for Claire to see the OT and get a new set of splints. Too bad. <sigh>
Later in the day, Claire met with Music Therapy and stayed awake for all but about 3 minutes (power nap in the middle of therapy - who can blame her when someone is playing a harp and singing so sweetly to her!).
After MT, the hospice nurse came to visit and weighed her. She weighed 11 lbs and 11 oz!! Again, mom was very pleased and thinks Claire needs to be getting motoring with rolling over and sitting up, she certainly has the muscle to do it, just needs the tone. Hopefully she can start her PT and OT again very soon and work on those things.
Mom spent much time during the day wiping Claire's face with a wet paper towel and keeping her under a fan with the AC cranked up (or down)... anyway, it was kept very cool. Her rash is definitely a heat rash and all that work payed off as she looks great with the rash all but gone! The thrush also looks like it is well on it's way out too, just gotta get the congestion away and she will be good!
Dad sent mom a gift during the day... mom had a massage therapist arrive at the door! It was a friend of dad's and a gift that was long overdue (mom thinks it was a gift from a year ago Mother's Day, but dad doesn't think it was that long ago)... mom really enjoyed it and the kids were all so well behaved, Claire was asleep the entire time in her swing and her sister was watching Peter Pan (the Disney cartoon) and Claire's brother was playing on the computer.
In the evening, Claire enjoyed being fed in a darkened room under a ceiling fan as mom and the kids watched Peter Pan (not the cartoon) and Claire was quite content! She drank a lot... and later, threw up much of it as she layed in her boppy. Too bad too, but just in time for her tub, so she was all cleaned up and ready for bed... the little peanut was exhausted. Mom thought she should eat more, but Claire was just worn out... and went to sleep around 10:30pm.

Claire slept until 4:30am. Mom woke up and gave her a bottle, then, around 6am, her meds and Claire soon went back to sleep. She was up again for daycare, and mom gave her more to drink as well as her purple meds. Her face doesn't look improved, but it doesn't look worse either.
She had a good day at daycare as her caregiver gave her the purple med and she did really well with it. At home, Claire slept until about 6:30pm, she was a tired bear, and then up for a banana smoothie. She drank 3oz and took a break in her swing.

Claire was up until 1am with her daddy, then mom got up with her at 5:30am. She was off to school today, but with a rash on her face and thrush in her mouth still. It looks like it had gotten worse tho.
Mom called the dr's office to see if Claire could go to daycare and the nurse said yes. Mom also asked about the violet medicine and the nurse said she would call back. Mom took Claire to daycare and Claire seemed happy as a lark. But still not sucking very well, probably the thrush.
She did okay at daycare, and around 1:30pm got a call back from the dr's office to say that mom should give her the purple/violet stuff.
When mom got home, she stripped Claire down to her diaper and gave her the med. Mom dipped a cotton swab into the bottle and placed it in Claire's mouth. It wasn't messy until Claire decided to suck her thumb. Once that was inevitable, mom had to move quickly, getting Claire's surroundings 'safe' from little messy purple hands.
Mom waited a while before giving Claire some shake... er... smoothie. Now Claire was drinking and dribbling light purple cream, instead of milk. A new adventure for both mom and Claire.
Mom bathed Claire and they sat down to watch Shrek with dad's surround sound system. Claire fell asleep around 8:15pm, and mom was pretty tired too, but having problems with the cable Internet connection... and very frustrated, as was dad, since he had a lot of work to do.

Claire was once again up most of the night. Even tho it was Father's day, dad let mom sleep in for a few hours... he let Claire sleep too. When they woke up, everyone joined dad for a celebration! He got lots of nice presents and had the house decorated for him with a nice 'card' signed by all!
They all went to church and Claire was dressed in her Sunday best. Dad noticed Claire was getting a rash on her face. Looks like a heat rash. Mom said it was likely from the drool on her face and her sweating. Certainly, the thrush didn't help matters either. It was mild, so mom opted not to worry, not very noticeable.
After church, Claire hung out in the air conditioning. Mom went out to plant dad's Father's Day flowers in the pots out front, but it was so hot... that was her last venture outside for the day!
Mom finished cleaning the house and dad mowed the lawn and worked on the front door a bit. Company was coming to celebrate Father's day! Dad fixed a yummy meal, and mom made her best mashed potatoes and garlic sticks. Friends brought over ice cream and cake and everyone was more than full as they all said goodnight. Big day tomorrow as Claire's big sister goes to her first basketball camp, dad has a closing, and mom has a new computer at work as hers had a hard disk crash on Thursday, and she is still restoring software. Claire drank a few ounces and drifted off to sleep. She was up again around 11pm and dad said he would watch her while mom got some sleep so she could take over in a few hours.

Claire was up at 1am, then again at 3am, and then at 6am. She drank each time and went back to sleep. Mom had her O2 canula on her again tonight.
She was up and played a little and drank a little, but mostly slept through the morning and afternoon.
Dad picked up some plain yogurt and mom gave her a little, but she didn't seem particularly fond of it, so mom added applesauce, and Claire liked it better. She had about an oz of that. She was probably a little full still from her previous meal, and mom didn't want to give her too much, not knowing if she was lactose tolerant or not. Later mom made Claire a smoothie, which is really just a 'shake' with yogurt mixed in. It seems to make her a little more regular where BMs are concerned, so it could well become a regular routine.
The family spent most of the day in the kids rooms, getting rid of 90% of the toys and making room for the floor.

Claire was up until 2am, and mom put the oxygen canula on her little nose. She seemed to finally be resting peacefully, until about 2:45am. That was when she woke up, and given that she'd thrown up before she went to sleep (oh yeah, she did do that), mom knew she wouldn't sleep too long before she got up hungry. After eating, she settled in and slept through the rest of the morning. When she woke up, around 9am, mom noticed the canula was around her chin... but is certainly served its purpose during the night, so she wasn't bothered by it.
Mom decided to keep Claire home today and see the dr. Her cold has been keeping her up until all hours, and she had such a good 'run' there of sleeping so well.
Mom called the dr office to see if she could get an appt. Mom felt like Claire could be getting pneum again and didn't want to risk it... and wanted the dr to listen to her. Claire slept much of the day, waking only once or twice to eat, and once in the dr office. She didn't eat really well today, but her weight had been so good, and mom wasn't convinced she knew how to sleep, so she let her sleep all day. Mom was fairly certain that whether Claire slept all day, or mom kept Claire awake all day, Claire would surely be awake all night... and she needed sleep to fight off her cold.
The dr appt was late in the day. Claire weighed in at 11lbs, 6 1/2 oz. Mom, once again, was so very proud.
Her dr noticed thrush in Claire's mouth, and prescribed gentian violet. It would color Claire's mouth purple (along with anything it touches and anything Claire drools on)... but that seemed like it would be easy enough to avoid. He also said her lungs sounded gunkier, so he prescribed an antibiotic for that. Claire slept through most of her appt too.
Dad picked up the prescription (and some wings for dinner) and mom read on the Internet about the g. violet stuff. On the bottle, it said, 'for external use only' and online it talked about giving it to babies for thrush, but also mentioned it was poisonous. Mom decided to hold off on that and opted to just try some yogurt for Claire, which she was told by some T18 moms, has active cultures that fight yeast infections, which is what thrust is. It was pretty late at night, so mom opted to go to bed and get the yogurt in the morning. Claire was in bed at 10pm, but up again frequently during the night.

Claire was up most of the night and so was mom and dad... getting about 3-4 hours each. She went to daycare and ate fairly well, but was very fussy with her loud, random cries. She isn't sleeping well, not for more than an hour at a time, and just plain uncomfortable all the time. Mom is blaming it on teeth, and feels Claire is long overdue to have some. Mom is considering making an appt at the dentist's office to have her mouth looked at... but waiting for a few more days to see if that is really what it is, and giving Claire that time to produce some teeth, or it's off to the dentist!
Claire didn't sleep well... she was up most of the night.

Claire slept in some, and was up to get ready for visitors after her photo shoot and her hair appointment. She had hospice come by and dear 'grandmother' came by too. She was well behaved as usual, and eating very well too! Mom is just hoping everyone will get some rest soon!

Claire was up at 3am. She had about 2 oz of shake and layed in mom's arms talking again. Mom really needs to get that on video! Mom also needs a Claire-to-English translator! She was probably keeping dad awake too with her little noises. She was looking right at mom the whole time she was talking... it melts mom's heart when she does that! After another 3oz, around 4:30am, she finally looked tired, so mom put her in her bassinet... only a few more words from her and she was settled in for the rest of the morning.
Mom woke her for a quick sponge bath, meds and with Claire's sibs, they were soon on their way to start their day. Claire was asleep upon delivery to daycare. Mom took 5oz of pedialyte and juicy juice (4oz of ped mixed with 1oz of juice) with Claire, she had already downed one oz.
She finished the bottle and had another 3oz of shake by 1pm (along with a one hour nap).
Overall, she had a good day eating, but a poor night sleeping. Getting to be a routine with her, sadly.

Claire was up at 1am. Dad was still up working on bills and other assorted items in his 'in box'. Mom fixed her a bottle, and she eventually finished it, about 4oz of thick shake. Claire laid down, but was up in 30 minutes. Mom tried everything in her box of tricks. One dose of mylacon for gas and one dose of decongestant. Mom didn't give her Infants Advil, as she as hoping something else would have worked. Claire was drinking Pedialyte with juice, hoping to solve any constipation problems. Dad came to bed around 2am, but couldn't get sleep with Claire being the life of the party.
Mom gave Claire a suppository at 3:30am, and by 4am, Claire had a full diaper and now the Peanut was pretty happy with herself. Mom laid with Claire sitting up right in her arms, and Claire was talking and talking and looking up at mom the whole time to be sure she was listening. As mom shut her eyes, Claire would talk louder and mom had to look alert so Claire would quiet down and not wake up her daddy, right next to them. She was talking up a streak and one would think she was out to solve the worlds problems. She was certainly very content in mom's arms, and certainly VERY wide-awake... more than can be said for mom. It seemed so obvious that she just needed company. As if she gets lonely, and fusses, since, when someone holds her, she becomes quite content, not sleepy, but content.
Mom couldn't sleep, and knew she would need some soon... she tried fixing Claire up with Red Dog... maybe she could play quietly with him while mom snuck in an hour or two... but they were fighting a bit too much, and Claire was very upset and swinging at him, or at least mom caught her with her arm in the air, as if ready to take a swing. So mom had to hide him behind the swing. Then Claire was unhappy with mom and was really crying then.
By 5am, Claire was still up and ticked off... mom was pretty exhausted and was debating whether she should just stay awake, as her alarm would be going off soon, and she wasn't sure she would wake up - she knew dad wouldn't!
Within minutes, dad got up to see what he could do. He picked Claire up, laid down and put her on his chest... she immediately quieted down. Sometime after that, he laid her on the bed between himself and mom, and she slept... snoringly.
Mom was up at 6:30am getting the kids ready for summer camp and getting ready for work. Claire's brother had another field trip and had to be at camp early. Just 15 minutes before they had to leave, everyone was ready! Mom snuck in the room where dad and Claire were sleeping and picked her up and took her out. Packed her bag, changed her outfit and they were all out the door on time. Mom was pleased.. tired, but pleased. Nothing a little creamer (with coffee) can't take care of! Tonight Claire will likely get her much wanted Infants Advil... and early, so everyone will have a chance at some much needed sleep.
Mom had noticed the anti-seizure meds were a shade off from the previous bottle. She wonders if it isn't as strong, and the strength of the previous bottle helped her sleep better... mom has too many middle-of-the-night hours on her hands.
Today, mom got an email from Baby Bailey and her mom. Evidently, she is very similar to Claire, tho a couple pounds bigger, and she is going to celebrate her one-year birthday on June 29th!!
The bottom of the letter from Bailey's mom, she had a very inspirational story that she wanted to share with Claire and her mom:
'... And... just a little inspiration for you... A 21 year old girl who cuts hair where my family goes, just got a diagnosas of T18. She didn't know me, but people recommended we talk. When she came, the doctor had told her not to come back until she was ready to abort. I talked with her and told her of the lives these babies seem to change. We played with Bailey and I had her read about Claire. When she left, her last words were, "I'm keeping this child." Claire has helped save a life and has given another baby a chance. Thank you!'... and Thank YOU Baby Bailey too!!
At lunch, mom took Claire's anti-seizure meds to the pharmacist. She explained how she thought that there should be more OF the 'cream colored' med at the bottom. Before shaking the current bottle, it is about 5% cream to 95% clearish (perhaps the pharm's big 'vat/bottle' wasn't shaken, but closer to the end of the bottle). She recalled it should be more like 25-30% cream to 60-75% clearish color. After explaining, she wanted to see the bottle they pour out of. The pharm was happy to oblige, however it was recently shaken. He said he would refill the prescription and disappeared around the corner... and mom thought... and then blurted out, 'don't refill from THAT container' as it would be a bad dosage... been there, seen that. He came back around the corner, and got a new, unshaken bottle. He was so helpful and showed it to mom, so she could see the correct proportions before he shook it and refilled the prescription from the newly opened bottle. He was so nice, mom didn't have the heart to yell at him as she planned. Yeaaa mom, way to be the bigger person! He also took mom's word that the proportions were wrong, as the bottle was shaken before he saw it (rough drive over to the pharm). The new prescription was filled and the color difference the old bottle and new bottle was obvious! Mom rushed off to Claire's daycare to swap out the dosage before she got her afternoon meds... got there just in time... yeah! Claire hadn't had a seizure (this time) since being on 'bad' bottle, thank goodness, but mom has learned not to wait for one, as it would take a day or so for her levels to get normal again.
Claire had a good day at daycare, drinking 14 oz of shake. At home, she had more to drink before bed, along with meds and Infant Advil. She drank so much she fell asleep during her bottle. Mom put her to bed at 10pm, and went to bed at 11pm herself. Hoping for much needed rest tonight!

Claire was up until 1am. Some rest was had. She went to church, came home, finished her bottle and took a nap. She slept for a few hours and mom had to go grocery shopping, so dad had strict orders to wake her at 3pm and give her some pedialyte with juice. He did.
Mom and dad cleaned the house most of the day and the kids all took naps, as last night was a late night for everyone. They were tired and didn't fight the idea too much. Claire's brother wanted to stay up to watch the Red Sox game, and he knew there wasn't a chance without a nap.
In the evening, friends came over for spaghetti and they have 3 kids, so the house was jumpin' with good friends and children. Everyone had fun and was in bed at a reasonable time, except Claire's brother... who got to watch the game. Claire went to bed at 10pm, and mom was right behind her.

Claire was up until 5am. A long night for mom and dad. Even Advil didn't take the bite out of whatever was 'eating' her.
Fortunately, mom took a nap - 3 hours worth - during the day. The family went over to friends house in the evening to swim and had grilled burgers. It was a fun evening for all!

Claire woke up at 3am, hungry. Mom fixed 5oz of banana shake and Claire drank 3oz of it in about 20 minutes and mom put her back to bed, she fell back to sleep very quickly.
Mom woke her up in the morning just before leaving. She gave Claire her meds and a quick sponge bath, as Claire had been her usual sweaty self. Then a cute outfit and clean diaper and they were on their way. Mom had Claire's morning shake ready, and gave it to her caregiver so she could start breakfast as soon as she arrived, she lives within minutes of Claire's house.
Mom had to get Claire's big brother to camp early so he wouldn't miss his field trip this morning with Claire's sister in tow, and then mom set off for work.
Claire drank her whole bottle in the morning, and by 1pm had enjoyed 4oz of carrots. Yum. Mom picked Claire up and noticed her bottom gums were looking a little different. She felt around, no teeth, but her gums were very 'hard' like they were there, just not coming through.
In the evening, mom fixed her some green beans, as she was very fussy, with hand in mouth. She wasn't too excited over the green stuff, but had an ounce to satisfy mom. Mom rubbed Claire's gums and Claire had such a content look on her face, she sat still while mom rubbed away. While mom was getting dinner ready, and cleaning the kitchen for Claire's bath, Claire started dozing off. With a messy baby who hadn't eaten much in the evening, mom hurried with the bath and woke Claire, bathed her, and let her finish her green beans. At this time, the green beans were in a bottle with a little formula to loosen them up a bit. Mom also gave Claire a suppository, as she hadn't had a BM in a few days.
After Claire's bottle, mom put her in her bassinet so she could tuck in Claire's sibs. When she came back, the peanut had fallen asleep. No sense in fighting it. Claire's sleep time: 8:30pm. Unfortunately, mom will have to wake her in a bit for her meds.
She took meds well, as she was up at med time, and didn't go back to sleep.