Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Fourteenth Month

May 10

  Claire slept through night and woke up soaking wet. Mom thought the room was cool enough, but must have been mistaken. She changed Claire's clothes, gave her meds including a decongestant and Claire drank 4oz of shake and fell back to sleep. Mom put her back in her bassinet and got ready for work. Claire was very congested, and tho mom had plans to take her to daycare, decided to see what dad was up to in the morning, and see if he could watch her for 1/2 day, and she would work from home the second half and watch Claire. Claire woke up again at 10am and drank another 4oz of pedialyte with another dose of decongestant and hung out in her boppy pillow so her head would stay nice and high (for draining). By afternoon, she finished off 4 more oz of shake. Not too much for her, but she wasn't feeling well.
In the evening, some friends were in town from Ft. Lauderdale for a Police Memorial ceremony to honor fallen officers. They come every year and it is so nice seeing them. The family met them at the hotel for drinks, then off to a big dinner where there were was much laughter and fun. Claire was great, she drank and snoozed for most of the meal.
Once home, she had two more seizures, one at 8am, so mom opted to give her her meds early, and the second fairly shortly afterwards. Claire had her evening bottle with banana shake and mom and Claire were in bed by 9:30pm.
Mom noticed a wonderful post about Claire on the T18 support site. It was written by another T18 mom who's photo is below (she is in the white sleeveless shirt). The responses were very sweet too.
May 9

Happy Mother's Day!		   Claire slept through the night, snoring quite loudly. While mom got to sleep Trisomy 18 Support Director - feeding Claire. Roses behind them were used for ceremony.around 10pm, and woke up at 7:30am, she still didn't feel like she got a lot of rest. When everyone was dressed, mom changed Claire and gave her a decongestant - knowing they would be flying later this would give her head a chance to clear up if there was any congestions, and they rushed off to the Mother's Day Brunch hosted by some of the Trisomy 18 Support moms. It was very nice and the family saw many of the same people that they'd bonded with over the previous few days. It was like a mini conference. After brunch, the mom's planned a lovely ceremony on the beach, just outside the restaurant/hotel to honor the T18 babies, those surviving and those that have not... and some that were not yet born. Mom met another mom who was expecting her second child, a full T18 baby. Mom wished they could talk more, but everything was a bit hectic. They will keep in touch tho and mom will do whatever she can to help her out, starting with sending the expecting mom a copy of Claire's birth plan.
Claire's sister and brother enjoying the dayThe ceremony was beautiful, mom couldn't talk as she was all choked up, but did what she could to get the words out. She told everyone how proud she was to have Claire, then she spoke for another mom who couldn't be there, but wanted everyone to celebrate her child's life. Her child is Baby Grace, and she is 6 months old and surviving... perhaps that is what choked up mom so much... she is proud of Claire, and she is proud of those other babies like Claire that are still here and making their families happy too. After everyone had a chance to speak, they walked down to the beach and threw in a rose for each child and reflected on the beauty of the roses, and watched them open from the salt of the water. After the ceremony, as mom was walking back up the beach, she noticed Claire had another seizure.
Claire's ridesAfter the ceremony, the family rushed back to the hotel/resort and feverishly packed up. It helped that they had the pilot with them, so they knew the plane wouldn't leave without them... a real plus with 3 kids!
They flew out around 1:30pm, and mom gave Claire her meds then (about 1/2 hour early) to try to avoid a possible seizure in the air. Claire did great on the plane. Mom gave her pedialyte and bananas mixed (as it was less likely to sour before mom could fix a new bottle) and Claire enjoyed it, tho very slowly. They had a smooth flight, and were back at home by 4pm. Mom and dad could never say in words how much this weekend meant to them, and a how incredibly appreciative they are to have such a terrific friend who would take them to this neat place and spend his entire weekend with them and learn more about Baby Claire and other families like hers. It was a terrific Mother's Day present for Claire's mom!
Back at home, Mom started an early dinner so the kids could get to bed at a reasonable time, and so she wouldn't have to deal with it later as her energy level was sinking slowly. After dinner, she sat down to download images from the weekend and enjoy the rest of her Mother's day.
Moment to talk about the babies and children   Reflection  Roses opening up
May 8   T18 mom holding ClaireClaire slept through the night, and had a really big day in store for her. She hung out by the pool for most of the morning as the kids swam, she kicked back and drank her shake and played with mom. Later in the day, she accompanied mom to a Ladies' "Tee" that was part of the Day of Grace Golf Tournament. It was a nice time and more moms were there to give her lots of attention. Claire's uncle holding herClaire's uncle came over to play golf and enjoy the event, but had to go back early that evening. At one time, they asked the T18 families to stand, and Claire was acknowledged as a 'surviving' T18 babies. She was the only one the whole weekend who could be there, so she was a kind of a 'mascot'. There was one family there with a T13 child. Mom was impressed with the darling little girl and spoke with the parents for a while, they were sweet, wonderful people who really enjoyed their little girl. They have two other children as well.
After the Tee and Live Auction... or shall we call it a "Lively" Auction, as much fun was to be had, the clan went back to the hotel to get some shut eye for the early Mother's brunch in the morning.
May 7   Brother fearful, Sister indifferent, Claire asleep at take-off.Claire slept through the night. Mom woke her for meds and breakfast. She drank 5oz of shake and fell asleep in her carseat. Later, she went to daycare, but only for a few hours, as mom has big plans for her later today.
Mom picked up Claire in the afternoon and went home to gather some last items, then it was off to the airport with her mom, dad, brother and sister. Once there, they went to the smaller airport where a friend of theirs met them, with his daughter. He was a pilot and owned a plane and he flew the family down to the Day of Grace Golf Tournament.
Restaurant laughter as Claire is passed around from mom to mom.The plane held only 6 people, but was a wonderful treat for the family as it would take them 9 hours to drive to Naples, instead it took less than 2 hours to fly. During the flight, Claire had a seizure. Mom thought it may have something to do with the lower levels of oxygen in the plane, but then thought that, while it may have made it worse, was probably not the cause.
They arrived in the evening with just enough time to check into the hotel and meet other T18 families at a seafood restaurant for dinner. Claire drank 8 oz of shake as mom ate dinner, then she was passed around for everyone to hold, she was truly enjoyed by all.T18 mom holding Claire Mom enjoyed talking to the other moms and having the biggest Mai Tai she'd ever seen... and the most delicious too! During dinner, Claire had another seizure. Mom hates them.
After dinner, everyone when back to the hotel to sleep and Claire was very exhausted. Mom and dad slept on the foldout couch in the suite and Claire slept on the love seat next to them. The others slept in the bedroom.
May 6   Claire slept through the night. She woke up and had her meds and drank 4oz of shake (with bananas) in the morning, then off to daycare.
She had a good day and in the evening a bath and drank 8oz of shake before bed. Dad went to make her more, as she was still awake, but before he finished cleaning her bottle, she was drifting off to sleep. Mom put her to bed around 10pm, oxygen blowing by and a light blanket on her. She doesn't sweat as much with the ceiling fan on, so mom has had that on the past few nights.
May 5   Claire was up at 2am. Fortunately for mom, Claire fusses when she has a fever or not feeling well and wakes up her mom, otherwise mom might sleep through it all. Her fever at 2am was about 103, mom gave her Advil and 4oz of Pedialyte then, once the fever came down, they both went back to sleep, around 4am. What a great baby she is.
Claire had her usual busy Wednesday with Physical Therapy, and finding out that her PT was only going to continue for 2 more weeks. She got a new job, and tho it saddens Claire, she is still happy for her PT.
Afterwards, Claire got some well-needed rest and drank another 4 oz, then Hospice came for a visit, then Music Therapy. It was a busy day, and Claire drank and slept and drank and slept in between visits.
In the evening, she was very patient with mom while mom fed, bathed and got Claire's brother and sister to bed, and then they spent some quality time together in the evening. Dad was singing for Cinco de Mayo at one of the local Mexican restaurants... he was exhausted, to say the least, the next morning. Mom and Claire got to bed around 9:30pm, right after Claire's meds... it was all she could do to stay awake for her last feeding of the night. No fevers during the day or evening, mom is pleased.
May 4
9lbs 3oz		   Claire had a good night and spent much of the day at daycare.
She had a dr appt and weighed in at 9lbs 13oz, a loss from her previous weigh-in. Her dr said her lungs sounded pretty clear, but perhaps that is relatively speaking.
In the evening, around 7pm, mom noticed she had a fever. It was about 101 or so, mom gave her Advil and decided to skip Claire's bath.
May 3
Ortho. appt.		 Claire slept through the night, but that meant not much eating, and when she woke up, she wasn't extremely hungry. She had a few random 'cries' today, but much fewer than yesterday, so mom thinks that is a good sign.
Claire went to visit the Orthopedic dr today. He was a very pleasant man and mom appreciated him really taking time to talk to her and listen to her concerns. She really liked it when he said her kyphosis (curvature of the spine causing a 'hump', is minimal and even expected for a child her size. Also, in a small child, if it gets really bad, it is more easily corrected, and mom liked that too. He said she was too small for a brace, aside from the fact that he felt she didn't need one anyway. He also said the scoliosis (curving side to side) in her back may be due to the fact that small children have larger hearts with tend to curve the spine, and they can grow out of that (and their spine will straighten later). And he said it, too, was minimal. Her spine looked good and each bone seemed to be doing what it was suppose to be doing.
He wrote a prescription for mom to go have it looked at by the folks who make inserts for people like Claire to help her spine keep from curving more. Again, he didn't think she really needed it, but mom may take her by to let them have a look at her. They go back to see him in 6 months.
Given her fever yesterday and last night, Claire stayed home today. Dad watched her after mom took her to her ortho appt.
With dad, things are likely to be uneventful... sometimes, when Claire is concerned, mom knows that can be a good thing!
May 2   Claire woke up at 3am and mom gave her some shake. She drank 4 oz and never seemed to really get back to sleep. At 4am, she had a low-grade fever at 100.5(rectally, so take away one degree to equal an oral temp). Mom tried to give her Advil, but she threw up about 2oz, so mom gave her a Tylenol suppository. Her temp eventually came down, but mom didn't get back to sleep until about 7am, when dad took over for mom and took Claire out to the tv room. She was starting to feel warm again by that time.
Mom woke up around 9am and dad had some errands to run. He was back just in time for mom to go to church and leave the kids with him.
Claire has started back with her random 'cry' for no reason. Mom noticed today that they are preceeded with a 'startle'. That seems to rule out constipation and gas, and adds to mom's bewilderment. Fortunately, she doesn't do them too much while she sleeps.
Around 3pm, her temp went up again to 101.9, and that was under her arm, so you add another degree to get her oral temp of 102.9. Claire sat with washcloth on her head and her clothes half off to try to cool her down quickly. The Advil kicked in within about 20 minutes and she was down a degree, so mom layed her on the couch to catch some well needed shut-eye.
In the evening, her temp went up again. Mom gave her more Advil, and increased the amount every so slightly. Claire's temp went down and remained down during the night as dad checked on her frequently. Claire went to bed around 11pm.
May 1   Party dress on again... must be a party!Claire pretty much slept through the night except when mom woke her for meds at midnight. Claire was still recovering from her dosage schedule being off. Mom gave her a morning dosage and she drank 8oz of shake. Mom put her on her blanket with her toys and she fell alseep until about 3pm, when mom woke her to go to a party. At the party, she drank another 7oz of shake and started drinking 4oz of Pedialyte. Some folks were amazed to learn she was only one year old (mom offered no excuses or explainations for Claire's obvious small size), others knew of her trials and were very supportive of mom and offered to help in any way they could.
Mom enjoyed getting 'out' with the kids and being with family and friends.
They got home from the party at 8pm and the kids were in bed by 9pm, bathed and relaxed from a tiring day.
April 30   Claire had a good night, woke up at 6am for meds and off to daycare. She wore her hearing aid to daycare and they had a wonderful time listening to lots of different music all day.
In the evening, Claire also had a good night and an average day at eating, nothing to write home about.
In the evening, mom noticed that one of her doses was skipped, so called hospice to figure out what schedule to give her. She got an 8pm dosage and needed to get another at midnight in order to resume her schdule. These things happen, it is nice to know there is a 'fix' and she had no seizures, so it will be just put on the books as a lesson learned. Claire an the kids were all in bed by 8pm. Mom was happy about that... as that put her in bed at 8:30pm.
April 29   Claire was up at 3am and was hungry. Mom gave her some pedialyte but that wasn't enough, so mom fixed 4oz of shake and Claire guzzled it down and was settled in and back to sleep by 4:30am. She as also congested, so mom gave her some decongestant. By 7am, mom woke Claire for her meds and the little Peanut went right back to sleep. Mom got ready for work and softly moved Claire to her carseat, made her a shake, and swept her off to daycare. She was still sleeping when mom arrived with her to her daycare, and mom wondered if maybe she didn't sleep really well during the night.
April 28   Music therapy... my feet on a harp! Not many people get to do THAT!Physical Therapy... I don't want to sit up pretty and tall today, but will do it for you mom!All my favorite songs, sung to me!
Guess we need more pix for the website... how is this mom?Claire had a nice day. She was up and hungry. Mom kept her off solids today as she seemed to have very loose BMs. She drank a good amount during the day. She went to get a haircut in the morning and was very well behaved. Later, she was visited by PT and Music Therapy(MT). Physical Thereapy was a real work out for Claire. She worked on sitting straight and tall (and pretty). She really enjoyed the music therapy, she sat with her feet on the harp as relaxed as any baby could be. Mom took pix of course and has plenty to update the site. She slept for about 2 minutes during her MT.
In the evening, Claire still hadn't slept much during the day. Mom got a call from Baby Ryan's mom, she is the funniest lady, she always keeps mom in I love you mom... what's that over there?stitches... it's such good therapy for mom to talk to her. Afterwards, the family went out to dinner. Claire was such a good baby, drinking her formula/ped and watching the waiters run by her... she smiled a few times, it was neat.
She had a few 'cries' out of nowhere during the evening last night, before bed, but once she settled into bed, around 11pm, she seemed to sleep really well, but not snoring too much, so maybe she wasn't sleeping, maybe just checking out her fingers quietly.
Hospice didn't come by today, mom is trying to work something out so they can visit at Claire's daycare tomorrow and weigh her. Dad and mom didn't think an O2 check would be needed as Claire's color has been fine since she's been off oxygen.
April 27
10lb 1oz		   Claire was up at 5am for 7 oz of shake.... seems to be a pattern here. She went back to sleep around 6am and mom tried to catch a little more sleep too... not much luck tho.
Claire had an eye appt this morning, the dr said her eyes seem fine and she seems to really be working on fixin to an object and staying focused, and that is good... he would like to see her back in 6 months.
Then she had a ped appt. He said her lungs still sound a bit gunky and mom wanted him to keep an eye on them, so they decided to schedule her next appt in a week. Her weight was up to 10lbs 1oz. Mom was so proud as Claire breaks the 10lb mark once more!!
Afterwards, Claire went to daycare and mom off to work.
She had a nice evening, tho she wasn't too anxious to go to bed. Dad watched her after her 10pm meds and mom got some sleep.
April 26  

Let sleeping babies sleep...Claire was up at 5:30am for 6 oz of shake. She went back to sleep around 6am mom went to wake up Claire's brother and sister.
Today will be a big day for Claire. It will be her first day back at daycare, and she is so fired up! She drank 12 oz, (6 of formula and 6 of shake). Mom was at work for a full day too.
When she got home, she had another 6 oz, and then in the evening, another 4-5 oz... all of shake. That is nearly 30oz for the day, a new Claire record!!
She went to bed around 10pm and so did mom. It was a very long day for both of them.
My big sister loves me!!Dad was up until the wee hours of the morning, working on 'renovating' the basement... should be interesting to see when it is done. For now, just concentrating on painting it all and sealing it.
April 25   Claire was up at 1am for 4oz bottle of ped/juice, and then again at 2am to finish that bottle and then drink about 3oz of shake.
Mom overslept and missed Claire's 6am meds, but gave them to her at 8am. Claire also had a shake with prunes... her tummy is quite large and mom wants to help her get regular. Claire drank 6 1/2 oz of the 8 1/2oz mom made for her. The family went to morning mass and Claire was so sweet in church, looking around at the stained class and lights on the ceiling. Eventually, mom put her in her sling, as mom's arm was getting a little tired.
Claire came home and finished her ped/juice from church and took a 10 minute nap, then woke up crying. Mom kept her inside today as the weather is really warming up out there, even with the breeze. Claire has been a bit congested too, so mom was trying to keep her out of the pollen. Mom fed her 5more oz of shake with applesauce and Claire layed on the couch with her toys, mom thinks she should be taking a morning nap, but Claire feels differently.
She had a very relaxing day, and in the evening enjoyed a bath and some mom-and-me time once her brother and sister were in bed. She finished off her bottle and went to sleep. She is still on blow by oxygen in her bassinet in her mom and dad's room.
April 24   Claire was up at 5:30am... just in time for her 6am meds and a 7oz bottle of shake, then back to bed until 10am... that meant mom slept in too.
Claire spent much of the day outside napping in her playpen on the back porch with her mosquito netting over her playpen. She was up at 2pm for her afternoon med and drank nearly 12 oz, then sitting in her boppy preparing to pounce on her duck... he won't know what will hit him.
She drank fairly well, not as much as she had been, but that is fine with mom. She went to bed around 10pm.
April 23   Claire was up at 2:30a, with a big BM, which mom was happy to see since she hadn't seen to many lately. With that note, she gave Claire 4oz of Pedialyte/juice and Claire went back to sleep by 3:30am or so.
Claire was up at 7am, hungry, so mom fixed her 6oz of shake with bananas and she gulped it down. Then mom had to get ready for work, so dad took over and fed her a couple more oz before she was finally ready for her morning nap.
Mom is hoping that if she keeps doing well, she can go to daycare on Monday, but that is a long time from now.
Claire drank and slept and drank even more all day. Mom tended to lose count with all the bottles flying around and Claire requesting more.   :o)
In the evening, Claire's hospice volunteer came over to babysit while mom went to listen to dad's band play. It was fun for mom to get out and dance some and be with friends. Claire drank about 12 oz of formulay/ped while mom was gone, and drank another oz or so when mom got home just before bed, around midnight.
April 22
9lbs 14 1/2oz		   ... Love THAT duck... or bunny... or...Claire was up at 3:30am, squirming around a bit, so mom fixed her a bottle and she drank 6 oz of shake within just over 1/2 hour. She didn't go to sleep, tho mom put her in her bed hoping she would. After a while, mom noticed she was still awake and congested, so mom cleaned out Claire's nose, gave her a decongestant and another oz of shake, and sent her back to bed, and The Peanut fell asleep.
The alarm went off at 6am, but no one heard it... no one but dad, and he got up to get the kids off to school. Claire's meds came a little late, when the kids woke mom to give her good bye kisses before leaving for school. By then Claire was up and hungry. She drank 6 oz of shake and had her meds. Mom layed her on the bed around 4:45am and she fell asleep again with a full tummy. (that's 12+ oz by ~ 8am)
Let me see if I can rrrreach him.Claire had a visitor bright and early this morning too. Her family coordinator from the Children's Home Society came by to check on her and give her a gift. Claire and her coord really enjoyed each other, talking up a streak. She updated mom and dad on the status of Claire's new hand splints... they sound really tiny, but will help her learn to open her hands a bit more. When she left, Claire went into her playpen to finish off her morning nap. Mom hustled off to work and dad worked in the morning from the "kitchen" table. When she gets up, dad will give her juice/pedialyte to lighten up her tummy a little from all those shakes.
No signs of seizures this morning (fingers crossed!).
Dad gave Claire 4oz of pedialyte/juice around 1pm.
In the afternoon, hospice came to visit. Claire had been on the blanket on the floor taking swings at her duck (dressed up as a bunny)... she loves him, he get's her so fired up, it is so fun to watch her swing at him, and almost grab him. She was very alert and active. The hospice family coordinator brought the new travel scale that they just got in and Claire was weighed... 9lbs 14 1/2oz!
She also brought the O2 monitor, and Claire was in the upper 80s AND low 90's without her oxygen blowing on her or a canula. Mom declares today a BANNER day!
Claire drank another 3 oz before her 3:30pm nap.
When she woke up she drank and drank and drank... she must have had 13 more oz, mom started to lose track. She was so tired in the evening, mom put her down around 9:30pm after giving her her meds about 1/2 hour early. Mom followed and was in bed by 10pm.
April 21   Claire slept well through the night, with oxygen blowing gently in her bassinet next to her. She had a good night and woke up fairly hungry. She drank 6oz of shake and 4 of pedialyte/juice that her daddy made for her at 11am, while mom was at work. A small seizure at 10am, another at 1:40pm, just 20 mins before her 2pm dosage, and another later. She had her physical therapist come by and Claire was bright-eyed and ready to work out! Her therapist thought she looked really good and aware. Physical Therapy again... here we go.She was also proud that Claire followed her eyes and enjoyed looking at her face and even suggested Claire have a mirror to watch herself. Claire took a little nap after PT and when she woke up she gulped down 5oz that her daddy made for her while her mom was picking up Claire's brother and sister from school. Claire had music therapy and a small seizure about that time. Afterwards, she took another nap, in her playpen in the family room, with oxygen blowing by her face... it is a good life for Claire.
Mom updated Claire's ped on the seizures today and so far, they want to keep her at the dosage she is on now, but want to keep updated on her.
Claire had friends come by tonight to see her, but she was sleeping. One brought her a beautiful Easter Lily, another was a neighbor who just learned of Claire's diagnosis, tho they knew of Claire, they were unaware of her trials.
Claire drank 7 oz in the evening before bed... all shake. She had her meds. And then she fell asleep in mom's lap, so mom put her in her bassinet around 11pm.
April 20   Claire was stirring around 3:30am, so mom got up and fixed her a bottle. She only had 1/2 oz of formula and pedialyte, but still better than none. They were both back to sleep by 4:30am. Alarm went off for Claire's 6am meds, mom was pretty tired, Claire got her meds and was hungry. She drank 3 1/2 more oz of formula with pedialyte. Mom put her in her bassinet and took a shower. When she came out, Claire had her hands in her mouth like she would eat them off if she could. Mom fixed her a shake with applesauce and Claire drank 3oz more by 8am.
Mom hurried off to work and Dad took over Claire-Watch for the morning. Mom will rest a bit easier when Claire gets back to her 10lb weight. She is off her antibiotic now.
With a few seizures, tho subtle ones, mom spoke with the nurse at the pediatrician office... she insisted that the dr wants Claire on a smaller dosage, and three times a day. Mom went along with it, and is always for a smaller dosage. Time will tell if it will work for her. Mom just wants the seizures to stop and hope that things will get back to normal... well, normal for Claire. :o)
Claire had a nice bath and 6 oz before bedtime when she fell asleep while eating. Mom put her in her crib, content to know she had a really good dinner in case she sleeps through the night. She drank about 21 oz for the day.
April 19
9lbs 2oz		   Claire woke up hungry. Mom and dad fed her 3 1/2 oz with meds. Around the time for her meds, she had a few more seizures. Evidently, the meds aren't working like they should.
Mom went to work and dad took her to her dr/pediatrician appt. Dad fed her another 3oz in the morning.
It wasn't a very good appt. Her ped said that she appeared to be on a decline. Her pneumonia is better, but she is still losing weight and the seizures are likely part of that as she is losing energy too.
He recommended giving her seizure meds three times a day (same daily amount, just dividing it up in 3's instead of 2's), since the dosage is right for her weight. He feels she may never come off the oxygen completely.
He feels she will not thrive much longer, but said Claire could prove him wrong, but her battery is running low. It was all sad news for mom and dad. Mom feels like she needs to wake Claire at night and feed her, that would probably boost her energy level some, esp while she is under 10lbs. Dad said that mom is doing everything possible, and they always knew Claire wouldn't thrive as long as a typical baby... mom agreed, but will still do whatever she can for Claire's comfort.
Claire must have overheard the dr talking, because she appeared hungry most of the day. She had her hands in her mouth and ready for her food, unless she's fooling mom with some teeth coming in, but mom saw none.
The hospice nurse came out to see Claire. She checked her O2 and it is only in the 80's. So Claire is still on the oxygen, except at night. Mom decided to 'blow by' the oxygen at night (where it is on a higher liter and blows into the bassinet) since mom has noticed the last two mornings that Claire has taken the canula off her face, so she wasn't getting oxygen anyway... at least blowby is better than none.
She went to bed around 10:30pm. Now that her dosages are given three times daily, the 10pm dose comes a little late at night. Mom will probably ask dad to take over administering this dose, but don't tell him, he doesn't read Claire's journal. Claire had 20 oz today, 4 oz were pedialyte/juice, the rest was yummy shake. Mom gave her mostly applesauce in the shake to keep her regular.
April 18   Claire slept in again.
She woke up about 8am for breakfast and meds and once again, gulped them both down. She drank 5 oz of shake for breakfast and continued it through church. She woke up with her oxygen off, so mom decided to keep it off while they went to church. Claire slept in her sling for much of the time and mom and dad kept the O2 tank in the car during mass, in case she needed it.... she didn't seem to.
At home, she drank 2-3 oz of pedialyte/juice and then another 2oz of shake made with applesauce, which she seems to like. Afterwards, she napped in the afternoon in her playpen, still off oxygen and her color looking nice and pink.
Mom put her back on oxygen as she had a few seizures in the evening again, right around her med time. Eventually, they subsided and she fell asleep around 10pm in her mom's arms.
April 17   Claire slept in - on mom's side of the bed, which left mom with a poor nights sleep as she shared space with the princess.... Claire woke up around 9am for meds and breakfast. She gulped them both down.
She ate quite well and continued on oxygen today.
In the evening, she had two more seizures, it was around 4:30pm, so mom gave her her meds early and she seemed to stop having them after 8pm. Mom was relieved. Claire slept in her own bed, so mom and dad got a good night sleep. She was in bed by 10pm, and slept on and off until the morning. She rustled around a bit, and mom thought she might be hungry, but she never stayed awake for long, so mom let her continue to sleep, thinking she would fuss a lot if she were really hungry.
April 16   baby needs oxygen for a little longerThe week has surely flown by.
Claire slept through the night, mom woke her up at 9am for meds and breakfast. She drank 3oz of shake and mom gave her meds afterwards, as they seemed to be filling her up and she wasn't eating as well after she got them.
She went back to sleep, mom put her in the playpen in the tv room to keep her close by. Still on oxygen and still taking the antibiotic. She woke up around 1am to look around the room in amazement for hours. Mom put the tv on for her, and her hearing aid in so she could see AND hear Spongebob, evidently there is a marathon on today. Mom put a toy in her lap, but she is more interested in the ceiling... funny, everyone seems to like the ceiling in that room, it is odd, that is certain. She drank 3oz of pedialyte/formula and seemed most content.
here's my profile shot...Hospice called today to get two O2 tanks delivered. Until they get here, Claire won't be going on any outings, as they tank she has now is just above the refill line and mom doesn't want to take any chances... esp if the electricity goes out.
Mom is getting work done, and checking in on Claire and Spongebob every now and then. Amazing how much you realize how busy you have been, suddenly the work piles up when you are gone.
At 5pm, Claire had a seizure, relatively small, but mom gave her her dose of meds early. It puzzled Claire's mom and dad, but hopefully, she has just gained weight and can go back to her regular dosage now.
Claire had more seizures during the night and they ended about 11:30pm, about the time the hospice triage nurse (mom called them) suspected they might, about 6 hours after her dose. She fell asleep around then and slept through the night.
April 15   Me and my big sister... she loves to hold me, but never for too long, and that is okay with me!Claire slept from 10:30pm last night to 530am.
Mom was up with her, fixed her a bottle and gave her her meds around 6:30pm and put her back to bed. Then mom when and layed with Claire's big brother and sister as she hadn't seen much of them recently.
Claire was up later, around 9am, and mom fixed her a bottle, but by 12:30, she only had 2 1/2 ounces, not too much, and she was very talkative. Her music therapist came over today about that time and seemed amused by it all, and Claire went to sleep once in her arms.
Mom fixed a shake and Claire drank just less than an ounce before deciding she was just too tired. Mom put her in her bed and went back to work.
Mom decreased the O2 to 1/2 liter, the least amount mom could set it to. The hospice nurse said she would come by today with the pulse-ox (to test Claire's O2 levels) and maybe she can come off the oxygen completely today... fingers crossed!!
Her O2 was checked, around 4pm, and it was still was upper 90's with O2, but without it fell to lower 80's. It was decided to leave it on a few more days to give her the extra help she needed to fight the pneumonia. It was at 1/2 liter all day, but mom increased it to 1 liter at night. Claire went to bed at 10:30 after her bath and dinner.
April 14   Claire was asleep around midnight.
About that time, her dad tripped and sprained his ankle. He thought it may be broken and he was in so much pain.
Claire was up 2-3 times during the night, drinking some, and mom was exhausted by morning, compounded with thinking about getting up at 6am to get the kids off to school, caring for Claire AND caring for her daddy... but it seems he was out of bed before she knew it, said his ankle just needed to be walked on, and was up the stairs waking the children for school.
Mom had a 10am meeting, and dad watched Claire for her.
She slept much of the day, still trying to get better, and looking really pink and breathing smoothly.
She drank well in the evening, and then off to bed... fussing a little on mom's chest until she fell asleep... probably remembered that she filed an extension this year and her taxes are put off until another day. Mom gently moved her to her bassinet and then helped dad install some new software on his computer. Then off to bed by midnight.
April 13
9lbs 7oz		   Claire had a pretty good day today.
She was up 3 times last night. Just fussing a little. Once she drank 2 oz of ped/formula mixed. She is still on oxygen and mom hopes she will be off it soon.
She had a ped appt today. He said that mom shouldn't take her off the O2 until she is well. She has pneumonia in both lungs, but seems to be breathing well.
He said she could have a 'relapse' at any time, and not to expect too much from her, but that she could also have a full recovery. The O2 won't hurt anything as far as her dependency on it, but will certainly help her out a lot. Mom turned it down before the appt, but noticed her getting a little dusky, could have been her imagination too, and she decided to leave it on, and up around 1.5-2 liters.
Claire drank 2oz of bananas tonight and then another 2 of shake. It is the first 'hard stuff' she has had in a few days, and she really seemed to enjoy it.
She fell asleep in Grandma's arms around 9:30pm, waking for only a moment, Grandma thought to eat, but Claire fell right back to sleep. Grandma will certainly miss having a sweet, tiny, sleeping baby in her arms when she has to leave to go home tomorrow morning. Claire weighed in at 9lbs, 7oz... a loss of 13oz... guess that is what prompted mom to start the shakes tonight.

 

April 11
13 months

  

What is going on... and why am I holding an EGG?Easter Sunday.
Mom and dad woke up this morning to the sound of Claire's pediatrician. He snuck into the room at hospice and woke them up. He listened to Claire and said she was 'moving air well through her right lung'... mom's mouth dropped open. She asked if Claire might actually recover, and he SAID, "it would be up to Claire"... mom HEARD, "yes".
He asked if they thought about going home and said that it would be easier to get xrays for her if they were home. They had thought that if she was thriving in a few days, they would take her home... especially for the sake of her brother and sister. They asked if they could go home today... he said, "yes".
With the talk of chest xrays - where before there was no talk of them because there was no hope of impovement, so there was no need to monitor her lungs with an xray - mom gasped! She couldn't believe they were talking about taking Claire home... out of the blue it seemed to her... much less xrays to see if she was improved... and the ped believes she HAS! After being told that she was living on only 1/2 lung... to find out that she may be on the mend.
Mom and dad cried... with joy. Mom felt that it would be likely that Easter Sunday would be a day of great sadness, when in reality, it is a day of a *great* miracle. Dad teased that after 3 miracles, Claire is up for Sainthood... mom asked for the forms to sign her up.
Claire still has pneumonia, and could have a relapse at any second. Her fever spikes up frequently to 103-104... she even had a 105 today... so mom is frantic over that. But everyone is breathing a little bit better today... especially Claire.