Claire's Journal -- 22nd Month
January 10
  too cute for words...Claire is going to the dr today.
She's been having fevers and overall congestion. Mom called hospice first, and the nurse recommended going to see the ped to see if he wanted her back on antib's. Looks like a pneum relapse.
The hospice nurse wanted to come to the appt too. Mom got a call back from the ped's office and set up an appt. She asked dad to call the hospice nurse, and he left a message. Later he called and had her paged, but she was no where to be found. Guess there are other people who need her more (she is pretty terrific afterall) and mom and dad are just glad that Claire doesn't 'need' her too badly at this point. Dad kept the appt later in the day, mom went to work in the afternoon.
Claire weighed in at the same ol' 13lbs, no gain there tho mom thought/hoped there would be. Dr put her on the Z antibiotic, hoping to knock it out... the first dosage is a double dose and she takes it only for 4 days. (fingers crossed). He said her lungs didn't sound any better than her last visit.
Mom put her on O2 (cannula) tonight, so she could breathe a bit easier.
January 9   Claire had her pretty dress on for church today. Mom took lots of pix afterwards.

January 7   Claire was up at 5am again. She had meds and drank about 3oz. Mom decided the shake was a little too thick as she wasn't drinking too too fast, so mom diluted it with some ped... by then, Claire was interested, but almost too tired to drink, mom put her back in her bed around 6am, falling back to sleep at 6:30am, only to get up with the alarm clock. Dad got up to get the kids ready, but then decided he wasn't feeling well and asked mom to take over. She got the kids ready and off to school, then went home to shower and get Claire ready, and off to daycare then work.
January 6   my new shoes... a little big thoClaire was up around 5am, hungry. She had meds and drank 4oz and fell back asleep until 7am when she finished off another 4oz. Mom changed her diaper, put on her shoes (a little too bug, but cute) and put a bow in her hair, and off they went. Claire to daycare and mom to work.
Her physical therapy was cancelled today (therapist still sick). Mom will work with Claire tonight on some things the therapists went over with her, including using her new big ball.
Claire had a nice night. She drank 8oz in the evening and fell asleep in her swing. Mom let her nap for a little bit, then woke her for dinner. They skipped her bath, as she was still very tired and mom put her to bed around 10pm, and headed in herself.
January 5
  Claire was up around 4am until 5am, hungry. Mom gave her some juice, she had about 2oz and went back to sleep until 'morning'.
She was up again and drank 8oz, then mom got her ready for her dr appt.
She said she was still 'gunky' but much more alert and definitely better!
She weighed in at and even 13lbs. That's up only 4oz, but still not bad. Her arms and legs feel like they are filling out again, so it may take some time to get back where she was before the holidays and the pneum (weight fluction, common in women, weight loss during the holidays, not-so-common). Her dr said to keep her on the antib's for 10 days. Only a couple more days to go!
Claire was a good girl all day, hardly a fuss at all.
After the dr appt, dad brought her home so mom could run and errand or two. While out, mom decided to buy a few things for Claire. Her clothes are actually starting to get a little small for her, so she bought Claire some onesies and some long sleeved outfits. Mom also thought Claire should have some new frilly socks and bows. Even a pair of booties for church. She also bought Claire a 24" exercise ball to use for PT at home. Mom thought after Claire's rough holiday, she should have a few new things.
Claire finished off another 8oz bottle with dad, and went to sleep around 4pm until close to 8pm. Mom was a little concerned that she wouldn't sleep at night.
Mom woke her for her evening meds, dinner, bath and back to dinner again. She passed out just 1oz short of another 8oz. Fat and happy! She was asleep before 11pm.
January 4   Claire never really went back to sleep.
Dad put her in bed at 2am, thinking she was tired because she fell asleep on the couch with him, but at 2:05am, she was up again, fussing. Mom's turn.
Claire didn't seem to settle down. Each time she did, mom put her in her bed, and she fussed again. Around 5am, mom put her between her and dad and faced her towards mom so she could see mom was right next to her. She fell asleep.
Mom mentioned to dad that Claire may be sleeping between them at 2am again tomorrow, but it would be a last resort.
January 3   Claire slept until 6:30am. Mom's alarm was due to go off soon afterwards anyway, so they started their day. Claire was hungry and drank 7 oz, off and on, until 8am.
Mom got Claire ready and took her to daycare today. She's been completely off oxygen for a couple days, except for the blow by at night, as she had before.
Claire had a good day at daycare too, by 2pm she had another 10oz. She should be catching up with her weight soon. Her ped appt is on Wednesday, so they have a goal of gaining back that 1/2 lb by then. Claire is certainly doing her part.
Her physical therapy was cancelled today, too bad.
When mom picked her up, the little Peanut was snoozing. She continued to sleep in her carseat on the way home and once home, mom left her in her carseat as she seemed most comfortable and sleeping. Mom didn't want to disturb her.
Dad stayed home with Claire's sibs today. They are must have run some errands later in the day as they were gone when mom and Claire got home in the evening. They will be picking up pizza tonight, even tho it isn't Wednesday/Pizza night, some things don't always have to be so.
Mom and Claire went to bed around 9pm. Mom was happy to get to bed at a reasonable time. Claire was up around 11pm. Dad was watching tv, so he came in to get her and feed her so mom could get some rest. She didn't drink too much for him.
January 2   Claire had a nice day. She was up at 5am and drank 7oz of shake. Mom fixed her 5oz of juice for church and dad fixed her another 5 of shake for church. She drank all the juice and started the shake before mass was over. Her cousin held her much of mass, which was nice to see.
When she got home, she finished a bottle by 3pm. and then another and another.... mom eventually lost count of all the bottles she was fixing, tho she tried hard to keep a running total. Claire must have had between 24 and 28oz today.
She had a nice warm bath and then in bed and fast asleep by 10pm. She had been fussing in the evening, so mom gave her some motrin before bed...the fingers... no... the HANDS were in her mouth all evening and she was talking up a streak! She also had decongestant, meds and antibiotic, all of which are very sweet... poor dear. And Claire has been loud... grandma had called in the evening and got an earful from Claire, who was sitting on mom's lap at the time.
January 1

Happy New Year!!

Claire was up until 2am, bringing in the New Year with mom, dad, her brother and sister. It was a nice evening with neighbors shooting off fire crackers after midnight. Claire didn't drink too much and mom put her down when she was still awake, but she soon went to bed.
She was up again at 4am and again at 7am. Mom fixed her a new bottle at 4am and gave her meds, and she didn't drink much, and didn't want to go back to sleep. Something was bothering her as she was fussing randomly every few minutes. Mom gave her some Mylacon and she was back to sleep shortly before 7am. When she woke back up at 7am, Dad took over to give mom a much needed break... not to mention some much needed sleep. Dad fixed her a bottle and she drank another 3oz.
When mom woke up, sometime around 10am, Claire was sleeping, so she let her. Mom fixed her a shake when she woke up and she drank *** 7oz within an hour***, but still wide awake, then it was time for afternoon meds. Claire's nurse came by to check on her and said her left lung still sounded gunky, but her right one sounded clear (by Claire standards). Mom is pretty happy and the nurse said she was on the road to mending!! And this means there's another antib that will work for Claire! Yeah!
The family enjoyed some college football, including watching games where 'referees were paid by the (number of) flags (they threw)'..
When mom went to fix her another bottle, the Peanut fell asleep.

December 31   Claire had a pretty good night. She was up at 4:30am and drank about 3oz, then up again later to drink another oz, but overall waking to eat is very cool... it means she has a little more energy.
In the evening, she had a few more seizures, tho very mild, almost more like an apnea, where she looks off in the distance (usually upward) and kinda zones out... you have to wait for her to come back, but she seems to be keeping her color, so she is likely breathing, so maybe it's just a 'Claire moment'... and nothing more serious.
Claire's hospice nurse came by to check on her, the family is so very lucky to have her on call this weekend, so she is visiting them every day to check up on Claire and her pnuem situation. She said Claire sounded even better, but not out of the woods yet. They may not have to get the Z afterall.
She did say that they could go to friends to celebrate the New Year, but just keep a close eye on her color and keep the O2 close by.
The family had a quick dinner and off to friends. Claire drank 4oz of banana shake as fast as mom would let her, and still seemed hungry, but when mom offered her the formula, she wasn't interested, and her color was a little pale, so mom put her on mom's chest, a position where her O2 levels are always best, and Claire fell asleep at the party. Mom held her the whole time, mostly in her sling and they snuggled. Before midnight, the family went back home to celebrate a quiet NYE and ring in the new year.
It is really so very hard to celebrate the new year, even with all our blessings, knowing that just under a week ago, hundreds of thousands of people lost lives and loved ones... and we continue to count our blessings with a baby who shouldn't be here, but by all means wants to be!
December 30  

Mom was up about 4:30pm, and decided to feed Claire a little more. She woke Claire and gave her meds including her decongestant and antibiotic.
Claire drank about 1 1/2oz of shake and was just too tired to stay awake, besides, the meds probably filled her up another 1/2 oz.
Mom woke her again in the morning to for breakfast. Claire started a bottle of pedialyte with juice, and finished it around 2pm, just in time for her meds again. (minus the antib).
Mom has concerns about Claire getting worse over the long weekend -- hospice and dr's office are all closed tomorrow (Friday). Mom asked the hospice nurse to come out to check Claire today, and she was so sweet to do it, and fairly early, so they could make plans as to what to do over the weekend if Claire got worse.
To mom's happy surprise, the nurse told mom that she would be the on-call nurse over the weekend. Mom was so very relieved!! Mom called Claire's ped and asked what they should do if she got worse. It was decided that they would put in a prescription for the Zithromax - Claire's antibiotic of choice, and if she wasn't better by late Saturday or Sunday, they could fill the prescription and get her started on it. Mom, again, was relieved and feels comfortable going into the long weekend. Mom wants to hold out on the Z, as she would love to find another antib that worked for Claire, but cannot wait too long to get her what they know would work (fingers crossed). This is the first time Claire's had pneum and not gone to ER and not had chest xrays, bloodwork, etc. Guess it is because everyone's seen the signs before and know what's going on without all those tests.
Claire started working on some formula that mom mixed with fruit. Mom's been feeding her in the haberman and the squeeze 'cleft palate' bottle so she has the option of squirting into Claire's mouth, and often needs to to get that last oz or two in her. Her breathing looks more labored to mom, but the hospice nurse said that her lungs sound more gunky because they are likely loosening up the gunk more (that would be the medical terms). Mom is hoping Claire will get better by NYE, but not betting on it. It would be nice to spend it with friends, but not at Claire's expense -- mom thinks she doesn't need to be exposed to any more foreign germs at the moment.

December 29
12lbs 12oz

Claire slept through the night, so did mom.
They were up for the dr's appt today to see if Claire had at least stabilized, and it appears that she did that. Mom is hoping the new antibiotic will be a good one so they will have more tools in the toolbox when it comes to helping Claire with these nasty pneumonias. She got another shot of the antibiotic and a prescription for some to take orally. Her weight stayed the same from yesterday at 12lbs 12oz.
She rested well off and on throughout the day and drank 6oz of formulay/ped by 2pm. Music Therapy came by and played some nice songs for Claire and she stayed awake the whole time. After MT, mom held her for a bit, she was not interested in her bottle, but more interested in her thumb, so mom put her down and zonked out within minutes. It was probably the longest she'd stayed awake in days and seemingly alert. She's drinking from her haberman for the most part by herself. Just need to get that weight back up and clear up her little lungs so she can come off the O2.

December 28   Claire slept through the night. Mom kept her on O2 throughout the night and when she woke up, mom thought her little nose could use a break, so when Claire took her morning nap, mom put her on blowby oxygen.
Claire had PT today, and mom opted to keep the appt thinking some stretches and movement would do her some good. She's pretty much been just laying on the couch and not interested in bicycles or arm movements.
She had her dr appt at 3:15 today. The dr said she had crackling in her lungs... as if she swallowed a whole box of rice crispy treats. He gave her a shot of antibiotic and said to come back in the morning and they would decide then if she would need to go to the hospital or to hospice house. Claire weighed in at 12lbs 12oz and 27" length.
After the dr appt, mom took Claire home and pumped in as much fluids as possible to keep the little peanut from dehydrating, tho mom didn't think that was a problem, she wanted her to be in tip top shape if she were to get sicker... if that makes any sense. Claire seems to be taking more formula/ped than she does shake, so mom is going to put the shakes aside for a while, tho they offer more calories, mom think calories will still be in the formula, but also the fluids she needs.
The family is stressing over the possibility of Claire being away from home, especially for the New Year. Mom and Dad pretty much weighed the pros and cons of the hospice house, as the hospital is not much of an option (they would have little to offer Claire, and she seems to come out worse than when she is admitted... the drs don't listen to mom, etc)... unless something changes. Hospice is nice, but it had been a transition for Claire in the past. At this point, they thougth Claire would be best at home. It would be best for the family too, as mom didn't want to be away from the kids too, or keep Claire away from everyone... not to mention, home is just more comfortable for everyone, Claire has pretty much everything she needs here too, and mom has more flexibility in more ways than one.
Claire finished 4 1/2 oz and then went to sleep. She was a very tired Baire today. Much recovering to do. Mom followed shortly afterwards around 11:30pm.
Claire drank 13 oz today.
December 27   Claire slept through the night. Mom did wake her once around 2pm to give her some food, she knew Claire would sleep a very long time if mom let her, so since Claire was in bed around midnight after drinking around 4oz, mom thought it would be good to get her more food for the energy she would need to fight off this bad cold. As mom put Claire to bed, Claire put her thumb in her mouth and started sucking it. That was a good sign to mom, as Claire hadn't sucked her thumb in days... and it is so soothing to her, she really needed that thumb.
In the morning, Claire was up and fairly alert. She was talling her grandma some tall tales and grandma was hanging on every word.
The family awoke this morning to Claire's cousin arriving from the DL bureau with driving permit in hand and bouncing around the room. Teenagers are funny that way! Later, it was same cousin's birthday, so a party was in order after lunch - japanese hybachi... yum. Dad watched Claire and kids so mom could go and it was a nice break, mom really enjoyed it! Her stomach seemed to finally be settled.
Mom had called the drs office this morning to see if they could get an appt for Claire. The earliest one they had was 4pm, but dad didn't think they could make that one, so they took one for tomorrow at 3:15pm. Mom and dad spent most of the day, on and off, packing and left grandmas around 8pm. Mom was sad that the vacation had come to an end sooner than she'd like, especially since they were leaving because Claire was getting sicker and needed her drs attention. Any walk in clinic or ER wouldn't know what to do with Claire, she needs to see her dr who knows what antib's work and what her lungs should sound like. Mom also called the hospice nurse to update her on Claire's situation and said they'd be back home that evening.
By 5:30pm, Claire had a temp of 102.2 (underarm) and mom gave her some Motrin.
Claire drank 11 1/2 oz today.
December 26   Around 2pm, Claire had 101.4 temp and mom gave her tylenol. By then she'd had about 5oz and another 2oz by 8pm. NOt eating well, but keeping it down. She had another 6oz by 11pm totalling 12oz for the day. She had a low fever around 9:30 and 10:30 of 100.2 and 101.1.
She's taking it easy today in her boppy pillow, soakin in some oxygen and snoozing whenever mom isn't bothering her to eat.
December 25   She was up this morning, but only after most of the presents were opened by her sibs, but before family arrived to exchange gifts. She was out on her boppy pillow, pretty much sleeping most of the day and mom put her on O2 to keep her comfortable. She had a little fever today in the morning (101.2), but mom didn't give her anything for it, thinking it may not go up and she could nix it by herself. And she did. Later in the evening she felt warm again (6pm,100.6), but still only a mild temp. Since it was in the evening, mom gave Claire some Motrin to keep her comfortable throughout the night. Claire drank about 16oz today.
December 24   Dad arrived after mom and Claire got home from church and Claire was put on O2 with a canula. Mom decided to increase the dosage of the motrin and tylenol, and that helped considerably. Claire had another rough night while mom watched her try to sleep, but continuing to throw up frequently and mom kept running her to the tub to bring down the fevers. Dad had his Christmas Eve celebration with his brothers and their families with Claire's sibs last night, so he would be there to help tonight.
Mom was up until 3am with Claire, only to get up again with her around 6am today. They had a little nap in between fevers until about 9am, then Grandma took watch over Claire, getting the better part of an 8oz bottle of pedialyte in her.... feeding her sip by sip, as Claire did not like having the bottle in her mouth... her teeth must really be hurting... poor dear. Christmas mass was fun. Mom took Claire as her fever seemed better in control with the higher (probably more like normal) dosages of fever reducer and lower chances of throwing up. Claire almost threw up in church, and tho they arrived 30 minutes early, the were sitting in the very first row at mass. Claire did well, trying so hard to sleep. When they got home, mom put the canula on her, as dad arrived with it shortly before mass was over. Claire's color looked better than it had at church, and she seemed to sleep a little better. Sadly, her temp flared up to 103.7, under her arm, and a dose of Tylenol later she was back in the sink to cool down. Claire is such a sweet baby... she flinches from the water, tho tepid it feels cool to her, but she doesn't cry... just looks pitiful. Mom uses the bath as a last resort, but since it works so well, and her temp gets a bit too high, it is surely some of the best strategies in the war on fevers. Mom woke Claire around 12 midnight, as they waited for Santa, to feed Claire more pedialyte and change her diaper for bed. She fell right back to sleep after sipping on her 3-4 oz.
(under arm)
time comment
102.3 6am Tylenol
102.2 9am Motrin
100.8 950am napping comfortably
103.7 6pm bath/Tylenol
-- 900pm sweating
December 23   It was a pretty crazy day. The family was scheduled to got to see Dad's family for Christmas Eve, but unfortunately, with Claire under the weather (throwing up and high fevers) the plans had changed, and Dad took Claire's sibs while mom stayed at Grandma's with Baby Claire.
Claire's been throwing up almost everything since last night (about 1am).
Still pumping in the fluids and imagining that some if it is staying down... she probably sipped down about 8-9oz of bananas and ped today, and may have seen about 2-4 of those oz back up again. Her diapers are still wet and she looks pretty good, all things considered, just a little puny when she's mid-fever.
Dad took the canula with him tonight accidentally to see family, but she is on blow by, mom brought the concentrator with her. Mom opted not to go to S. FL to see Dad's family for Christmas, just hanging with her folks. Dad's family, one of his brothers, has a new baby, and with Claire being sick, mom doesn't want to expose the baby to anything icky like this.
(under arm)
time comment
100.9 9am Motrin
101.3 10am 102.3 orally
102.8 11am bath - 103.8 orally
104.7 1pm bath - 105.7 orally/Tylenol
101.2 7:30pm Motrin
100.x 11:30pm Tylenol
December 22   Claire was up off and on (mostly on) until 2:30am. Her meds schedule was off during the day and it may have had something to do with it. Mom let Claire sleep in for a little bit, and then got her up for a bath and off to lunch. Afterwards, mom took Claire, her brother and sister and her grandparents to see Claire's Aunt at her work. Evidently, there are quite a few 'Claire fans' there who wanted to meet Claire and Claire is always happy to meet new faces. It was a fun trip, everyone loved seeing her and she loved seeing all of them! Later in the evening, Claire was getting a little warm. Mom took her temp and it was 101.3 rec, which is 100.3 normal. Just barely above average, so mom thought she'd wait until closer to bedtime to give Claire any motrin. A little bit later, around 10:30 or so, Claire wasn't interested in her bottle, so Grandma gave her to mom and mom knew she was very hot, not just from laying with Grandma, so mom gave her Motrin and then took her temp. It was 103.0 rectally, so it was about 102. Mom was a little nervous and got out the wet washcloths for her head. She also gave Claire her meds and a decongestant, hoping she would sleep more comfortable. Claire was so very fussy, but eventually settled down on mom's chest and mom took her to bed close to 11:30. Claire had her eyes closed, but mom's not too sure she's sleeping too comfortably, could be a long night.
December 21   Claire slept through the night. She woke up, but not too hungry, just drank a couple oz and went back to sleep. Grandma insists she needs her rest, so mom let her take a little nap, that lasted most of the morning.
December 20  
Claire was up until midnight. MOm wasn't sure what the problem is, after the mylacon for gas and the tylenol for teeth, Claire finally settled down, but mom put the oxygen on and let it blow by her chest to enrich the air she was breathing. She quickly settled in and went to sleep until morning. Mom woke her in the morning for meds and she drank okay. By evening, she had slept most of the day and drank under 20oz. Grandma insisted we should let her sleep, so mom let Claire sleep, and hoped that she would sleep tonight. Claire had her meds at 10pm, then settled down on mom's chest after a few more ounces of shake. MOm thought at least that the sleeping all day meant that Claire was at least in no pain, from gas or teeth, or anything else, that she would maybe be able to settle down well in the evening, and she did. She was asleep by 10:30pm. Yeah!
December 19    
Claire had a nice day, she slept well through the night and she got up for mass this morning. She slept much of the time she was in mass and then back home she hardly slept at all. In the evening, she was a little fussy, but ate pretty well during the day.
December 18   Claire was up early and getting ready to go visit Grandma. Mom drove down with the kids as dad had some business to attend to back home. Claire slept much of the trip, and at the very end of the trip, she woke up and looked around as if to say, 'hey, where am I and how did I get here'... but then she looked over and saw mom and life was good again. The family got in around 7pm, just in time for dinner and grandma makes some quality spaghetti! Yum! The kids all ate well and went to bed by 9pm.
December 17   The kids had a 1/2 day of school today, so mom picked Claire's sister up a little early to avoid the rush. They were all lining up outside with backpacks, ready to leave anyway, so mom knew there wasn't much Kindergarten that would be missed that day. MOm also helped with Claire's brother's Christmas party. I don't think the children of the 5th grade could have been more spoiled with all the cookies and candy and treats, and that's is how it should be. In the evening, mom was much too exhausted to pack for the trip to Grandma's house the next day. So much so that she asked dad to look after Claire and put the kids to bed, by 9pm, mom was in bed and out like a light. She slept through the night without waking up once. Claire was in bed by 10pm, no problems for dad.
December 16   Claire was up every hour or two throughout the night. Mom wasn't too sure what her deal was, and would think by now she would understand what Claire needs, but after a couple final ounces (and Tylenol, mylcon, etc) Claire finally passed out... only to do her 3 second fuss every little while afterwards. Mom got very little sleep, and would be diving head first into the coffee tomorrow.
December 15   Claire was in bed by around 12:30am. She's been having a tough time, so mom has decided she would be getting Motrin before bed for the next few nights. Those top teeth are right there and really annoying the stew out of her. Dad was up with her and thought they should start trying the pacifier again. Claire put's her fingers in her mouth and puts them in so far (probably because it feels so good on her gums) that she gags. He thought perhaps a pacifier would help keep that from happening. MOm agreed they should try it. Claire had her weigh in today. She was only 13lbs 4oz with the hospice scale and 13lb 5oz at her ped. She enjoyed her music therapy and having hospice nurse and family coordinator visit all at the same time. It was like a small Christmas Party. The hospice nurse also brought buy a gorgeous quilt for Claire. It is a dusty rose color and perfectly goes with her name... that antique feel that you get with such a traditional name.
December 13  

Claire was up until 2am this morning. Dad was generous enough to stay up with her and mom was most appreciative. He said the only reason he thinks that she finally went to sleep was because she was just worn out.
She woke up this morning by herself and mom gave her meds and a bath, then took her to work for a short while to keep her away as Claire had a hearing test today and needed sleep deprivation so she could sleep during the test.
As usual, Claire has boggled the Audiologist who doesn't understand Claire's test results... so mom is still wondering just what is going on with Claire and her hearing. Unfortuately, the new ear mold isn't in, the one Claire has now she has outgrown, but still uses as every little bit helps.
Mom took Claire to her daycare afterwards and got a bite to eat on her way back to work.

December 12  

Claire had a pretty good weekend.
She partied on Saturday night with friends and saw the Christmas tree go up on Friday. She loved the lights and sat and processed them for a good long time.
Mom is very excited for her and her sibs, as Christmas should be a lot of fun this year, they are at such great ages to experience Christmas through different phases. At 10, Claire's older brother is still pondering the deep questions about whether Santa really exists. At 5, Claire's sister is imagining everything on tv will appear under the Christmas tree on Christmas morning... and at 21 months, Claire is enjoying the lights and senses the excitement of everyone. Mom sees an increase in her smiles, just whenever a musical toy is played for her or new Christmas lights are hung.
Claire has kept mom and dad wondering each night if they will get sleep. She sleeps through the night about every 3rd night these days, and mom is analyzing everything to get her to sleep every night. Mom is wondering if it is as simple as a change in her routing... so she will be sticking very closely with the nightly routines and bedtimes - whenever humanly possible.

December 11
21 months old

Claire has only three more months to go before her 2 year birthday!! Mom will start planning after Christmas, as she expects it to be a big blow out party.