Claire's Journal -- 32rd Month
January 26

  Claire was at 7am and hungry. Mom quickly made morning bottles of shake for the peanut and fed her after a diaper change and meds.
She was fussing at mom, since after a few ounces mom knew it was shower now, or who knows when/if there will be the next shower. Mom put Claire on the bed and her big brother came in to play with her, then her sister, and dad followed trying to get the older sibs out the door for school.
Mom fed Claire a bit more before heading out the door to Claire's dr appt. Just a regular check up. Claire will be going in for 6 week check ups after this one... and only going before that if there's a problem. She weighed in at 13lbs 3oz. Mom really thought she'd be more, as she is eating well, but that's life. Dr said she was looking good and he saw several smiles.
January 25


Claire slept through the night again. Mom woke her this morning to get her ready for another fun day at daycare. She feels very blessed that Claire is back in daycare, and that she is able to go as many T18 babies are fed through a feeding tube and it must be very difficult to find care for them. Mom often looks forward to going to work (it helps that she got a new slick puter a few months ago at work too). Life seems very good right now. Claire is appearing to be on the mend and eating well, she had about 28 oz of shake today, including the tsp of olive oil she had this morning... more fat is good... and again, it seems to keep her bms regular.
After work, mom picked up the kids, got them home and bathed. Fortunately, no homework was due, so after quick bathes, even Claire's, mom loaded them up and met dad at a friends home for pizza - yeah yeah, pizza night is typically on Wednesday, but lately Wedns has been calzone night, so it will all work out. It was a fun night! Lots of food and very dear friends. They have two boys so Claire's sibs really have fun over there, and Claire has her mom's full attention. The nice thing about pizza is that mom can eat with only one hand (and feed Claire with the other - Claire loves when mom eats pizza). Everyone got home late, around 9pm, and the kids were rushed to bed after brushing their teeth. Stalling as much as possible along the way.
Claire needed only her meds and she finished up her bottle before crashing in her bed. Once she was down, she was out like a light... the sweet little peanut.

January 24

  Claire was at 12:30am up until early morning with dad. He was up trying to get some work done, and Claire had other plans for him. Dad thinks it was teething, and mom agreed as the top gums are stretched out around the teeth, the two front ones are the only things missing.
Mom woke her early for some breakfast. She decided to add some vegetable oil (only a very small amount) to Claires morning shake, along with her vitamins (with flouride). She gobbled it all down and then after getting bundled up (hey it's 28 degrees out there this morning!) they were off to daycare and work. Claire was fussy all morning, probably because mom didn't give her enough food... only so many minutes in the morning, and with only 2 oz left in her 8oz bottle, mom felt she could wait 10 minutes until she got to daycare.
January 23

  Claire was in a good mood all day. She had fun in church as her brother held her most of the time and her sister tried to sleep. It was very crowded so there wasn't much room for that. Mom and dad passed the two girls back and forth during mass as mom was in the last row and dad had to stand in the back, behind them. He had Claire for that last few minutes and took her out to the entrance, but inside, and she all but finished her morning bottle.
Later in the day, mom was able to talk to another T18 mom over the Internet (so the call was free). It was pretty cool.
Dad made two large lasagna's yesterday, so they had a friend over and chowed down... with salad, garlic bread (xtra garlic) and dry red wine... yum!
Claire's brother had been to friends' house earlier in the day on the condition he would finish his homework and not watch the playoff NFL games, he agreed, but found it difficult to do, even tho he was working in his room, as he found every excuse to ask mom a question about his work... and then became quite distracted watching the game. Several ultimatums did fly! He got the work done by 9pm and after stalling with dessert (15 minutes to eat 2 scoops of ice cream) he finally went to bed.
Evidently, he had a blast visiting his friends.
While mom was helping him with homework, she was getting Claire bathed and Claire's sister ready for bed. Dad was busy cleaning the kitchen, and hanging out with his buddy... it was a full evening, but lots fo fun. The family loves when friends visit.
Claire went right to sleep after bath, meds and bottle... around 10pm. Mom was right behind her.
January 22

  Claire was up early, then back to sleep after meds... so everyone got to 'sleep in' until the alarm went off. The family were meeting neighbors for breakfast at Applebees for a local high school soccer team fundraiser. It was nice going into a restaurant that is busy, but not too crowded... got seated quickly by the soccer guys and then enjoyed a nice breakfast with friends. The family doesn't see them much, tho they live next door, oh the irony. Claire enjoyed breakfast as well, and mom ate hers with one hand as she fed Claire.
Later in the day, the girls all took a nap while the boys went to a basketball game. Claire's big brother played and scored 6 points. Two of them on a left-handed lay-up and he plays right-handed. Dad was so proud he called grandpa and told everyone he saw all day! Big brother was pretty proud too.
The evening was nice and quiet. Dad went to the office to pick up a folder and spent much of the evening at home working. Claire was in bed like clockwork and slept very well.
January 21

  Claire was up at 5am, so mom gave her meds and she drank a couple oz of shake. She eventually fell back asleep, but not before playing with her O2 cup. There is a paper cup on the end of the O2 hose, and mom heard some thumping shortly after she put Claire back in her bassinet. Mom looked over and Claire was swinging (and hitting) the O2 cup. Mom figured she'd get tired, but she didn't, so mom moved it out of her reach by a couple inches. Then, thumping again... Claire had the cup again and was treating it like she treats Red Dog. Mom moved it once again much farther away, and eventually Claire settled down. She was so lively and having so much fun. Mom was sure if she got the camera out, Claire would have stopped, and just the movement of mom to get it would have given Claire the 'green light' to start fussing and she would need to be held... for the time being, she was happily playing.
Mom left for work, leaving dad in charge again.
January 20

  Claire was up with dad until 1:30am... fussing the entire night. Poor dad.
They were up getting the kids ready for school and then mom needed to rush off to work, so dad stayed with Claire... tho she will likely be running some errands with him today, including a trip to his office.
Claire has a PT appt and OT appt today. OT called early this morning to cancel. Mom was assured by the ped nurse yesterday that Claire's referral for PT would be fine for today, but when mom called the PT office, they knew of no extension... when she called the insurance, they were waiting on more paperwork... mom was forwarded to one lady who was very upset that mom, a patient, was calling HER. She let mom know that the dr's office is the only one who is suppose to be calling HER, not a patient. Mom immediately informed her that she didn't call HER, she called the insurance and was forwarded to HER, and after being on the phone for 20 minutes prior and being passed around, she was not too thrilled to be there either, but needes some immediate answers to get approval for Claire's PT appt at 1pm that afternoon.
No luck.
Rehab will only accept an extension from health insurance, health insurance will only talk to primary care office and no one will talk to mom! But mom is going to talk to all of them... twice each, if she doesn't get this d*rn referal extended... and soon.
Just 15 minutes before the appt, she got a call from the insurance saying it would not be approved today. EVERYONE (even mom) knew the extension was needed... mom was on the phone much of yesterday and was assured it was taken care of... who do you believe?
Mom questioned the insurance woman asking why a blanket could not be granted for Claire... it seems obvious that this will be going on each month (trying to get an extension) and it takes up much time from each office (primary doc, insurance, rehab... and who knows who else?)... she liked the idea... and would pass it along... mom knows that means, 'sure lady, can I get you a million dollars too - <snicker>'. sad.
But I think mom is getting quite used to all this... the old run around is getting to be a common place for her and she knows when to ask and when to hang up. Builds character, right? heheheh.
Claire is once more without an appt tho... sad.
Dad was going to take her... one less appt for him today, ho hum.
Claire is going to get her RSV shot today tho... her dr insisted it is needed. Mom was hesitant since she is only just now getting over all the holiday gunk, but dr said if she has no fever, she should go, so she will.
Mom will get updates on Claire's day as it goes along.
Claire had a great day with her dad, but had a meltdown later in the day. Mom thinks it was because they were running errands and dad ran out of food. Claire's parents met at the kids' school, as dad was picking up Claire's brother for basketball practice and handing off Claire to mom. Mom was getting Claire from dad and picking up Claire's sister. Dad and brother were off to practice and Claire, mom and sis were home to bathe sis and feed Claire (remember, dad ran out of food). Claire downed 6 or 7oz within about 40 minutes and was good for much of the night.
After basketball practice, dad and brother were home to gather the rest of the family to go to 'step up' night for Claire's brother. He will be in middle school next year, so they went to a program to give them a taste of the BIG 6th Grade!!
Claire enjoyed the program and had much to say during it, mom kept putting Claire's bottle in her mouth to try to keep her quiet... and it helped somewhat... Claire was just talking, not fussing or yelling... it was very cute. She was also full of smiles for everyone around her.
The family got home before 9pm and Claire finished her bottle and went to bed like a very sweet and wonderful baby!
January 19


Claire slept until 7am this morning. Mom got her up and put her in her swing and got her meds and breakfast, while helping get the kids off to school.
She ate pretty well today, but mostly wanted to sleep. When music therapy came, she was all smiles, and so was mom when she was able to capture them and reinforce Claire's feeling better today!
Mom made a few calls to get the referrals up to speed. Claire needs OT, PT, Ortho and Geneticist. The last two will be out of town, so it would be good to get them scheduled together, but for now, she just needs to get the referrals to get insurance to cover it.
Mom is also waiting for xray results... from last Friday! She's pretty confused as to why it is taking so long, and the nurse said she would look into that. Those nurses see mom coming and must run the other way, as she has such a laundry list of things for them to do. whew!

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Claire slept much of the evening while mom chatted with family online... she's been very excited about video conferencing with family and the new AOL IM allows video conferencing along with the old instant message all for free.
Mom woke Claire for dinner and she drank really well, but got fussy and continued into the night. Dad took over and mom got some rest around 11pm... not knowing how long the night would be, she figured she'd better get a little sleep in.

January 18

  Mom and dad did 'tag team' so they could each get in some quality time at work. Dad was home around 1pm with lunch, and mom ran off to work. Claire missed PT today, as mom didn't mark it on her calendar. The referral ran out, so they wouldn't be able to go anyway.
Hospice nurse came by to see Claire and said she was noticably better, but wanted to keep her out of daycare for the remainder of the week. That will be tough on mom and dad, but much better then regretting it if she had another relapse... and they don't want a relapse... nooooo oo oooo.
January 17

  Claire slept in today. Mom woke her for breakfast and meds, but after about 4oz, she seemed disinterested. Her brother wanted to hold her, so they layed in mom and dad's bed and watched tv for a while.
Claire eventually took a long nap and when she woke up she drank more, then mom put her in her swing and she fell asleep again. Mom has her off the O2 for right now, and her color looks good, she's resting and swinging comfortably.
January 16
  Claire slept in today. She had a good night, but snoring and stuffy, so probably not sleeping real deeply. She had a slow start eating early, but picked up a little later in the day as she usually does and ende dup with a good full tummy by evening. She is still having nebulizer treatments in the evening, and in the mornings when mom has time.
Mom went to church with Claire's brother who was serving mass today. Afterwards they had a few errands to run and dad stayed home with Claire and her big sister.
Later in the day, mom cooked and cleaned a bit, then Claire's uncle and aunt came over for chili and Mexican cornbread. They brought salad and delicious desserts, strawberry shortcake (with angel food cake) and bailey's cheesecake... mom had two helpings of the shortcake and one of the cheesecake. Claire had her bath before dinner, so once she got her evening meds, she was ready to snooze. She had 22 oz today. She's on canula O2 during the day and blowby oxygen at night.
Dad asked mom twice today how Claire was doing. Mom said she was eating well and sleeping through the night, but since she's no doctor, she has no idea how Claire really is... afterall, Friday morning she thought Claire was doing well, until hospice nurse said she was struggling with her breathing (saddly, mom may be getting used to that, or it may be that she doesn't struggle all the time), and mom was told she wasn't getting better. So mom feels she doesn't have a grasp on how well Claire is doing... so now is not a good time to ask.
January 15

  Claire was up at 2am. She drank an oz and went back to sleep until morning. She was up again in the morning, fairly hungry. She did very well today drinking 27 1/2oz. She's on canula O2 during the day and blowby oxygen at night.
January 14

  Claire slept through the night, mom has been pleased and feels she is finally getting better.
Mom took Claire to daycare, only to have dad go pick her up within 20 minutes, as mom forgot she has her followup appt today at her ped office.
Later in the day, dad called from the dr's office and said that the dr said he was concerned about Claire. Tho she hadn't gotten worse, she should have gotten better with the antibiotics, and she needed bloodwork and a chest xray. The hospice nurse had met dad at the ped's office and suggested Claire be kept on O2 as she was still appearing to struggle a bit with her breathing.
Dad was a bit upset over the news. If the really good antib didn't work, what was left? How bad was she? They were hoping to get answers. While she was at the HMO getting tests run, Claire's ped suggested they go by the pediatrician there, to get a second opinion.
Mom met dad at the HMO after she'd gone home to get the oxygen for Claire and another bottle. Clarie was eating very well, another reason mom felt she was getting better, so all this came as a big 'blow' to mom and to dad!
After the xrays, mom, dad and Claire met with the new pediatrician and he looked her over and thought she could have RSV. Mom was frustrated at the thought of that, as Claire had RSV shots almost every month (she only missed one because she had a fever), and most of the months, Claire came down with some sort of pneum shortly after the shot. This was the same peds office where she got her shot, so the nurses were familiar with Claire, and mom was familiar with them. The ped noted that the RSV shots weren't necessarily going to prevent RSV, but just make it less severe. Mom and dad were very saddened by the thought that Claire had it. The ped said they could test for it (swabbing her nose), but that there wasn't anything that could typically be done for RSV - not even antib's. Mom said if she didn't have RSV, she would still want to know, so they could continue with antib's, and the dr agreed it would be good information to have to help Claire, so she was swabbed... and she was one MAD Baby. Dad had a meeting, so he left mom with crying baby, on their way to get the bloodwork done. That was a disaster in Claire's book. Three sticks!! And still barely enough blood for the culture. Hopefully it WAS enough! The ladies said they would send it off anyway.
Mom decided to walk back to the new ped's office and see if they got the RSV results in. They had. She was negative... mom was so incredibly relieved! So now antib's could treat whatever Claire had. Mom also inquired about the xrays, but the nurse could only say that the ped looked them over and thought her lungs looked good... but that wasn't the radiologist's read, and we wouldn't get that until Monday, a holiday, so maybe Tuesday.
Shortly after they arrived home, the ped's office called, Claire's ped, and said that he got the bloodwork and it just looked like she was fighting a virus. He said he spoke with the new ped about the xrays, but that they needed to wait until next week to get accurate results. He mentioned the RSV test and said he didn't have the results yet, but mom knew and told him the nurse said they were negative. He was relieved too. He pretty much stated that Claire will always have a 'chronic lung problem' and it is something she will have to learn to deal with. Sadly, Claire has this problem and she doesn't smoke... mom thinks of all the people, even the young teens, who smoke, a choice they make, and they too will have lung problems, even be on oxygen, but at least they made the choice, and they do know better. Claire was just thrown into this situation. Mom is very happy when she watches Claire rest comfortably without her oxygen, it is a small thing for most of us, but it is a big leap for Claire when she goes through these awful bouts with viral infections.
Mom kept Claire on the oxygen all day and at night too. She had about 27oz today. Guess all those tests really created an appetite! She's been having nebulizer treatments for the past couple days, and will continue on them for probably the next week or so.
January 13
  Claire slept in today. Mom had to wake her for meds (including her last dose of Z) and she drank 6oz of shake. They hung out for a while in the morning as mom and dad opted to keep her home today. Mom having the morning shift with Claire. Dad came home at lunch and mom headed out the door, behind dad and Claire, who had a PT and OT appt today (the first in weeks).
Mom got a call later from dad who had some business to attend to, so they decided Claire was doing well enough to spend a couple hours at daycare, as mom had just gotten to work a few hours before, and couldn't pick up the kids early... long story short, they called the sitter. Claire got there with a big appetite. Claire drank 20 oz today.
January 12
  Claire had a good night, not waking until 7am.
She spent the day with dad, and mom came home at lunch to check in on them, see that Claire got her afternoon meds and dad was giving her the much needed attention. Claire was seeing to that too.
Mom has pretty much decided that Claire is spoiled rotten from being held so much. Mom doesn't mind it, and it is much better than her crying when she is held... when she is laying down, often her little arms (usually just one) goes up towards mom. Mom thinks it is Claire asking to be held. Claire doesn't do it when mom is holding her, just when she's laying next to mom, or in her carseat or boppy and wants 'up'. She's really becoming quite the personality.
In the middle of the night, when Claire isn't sleep. Mom will feed her, she has a full tummy, but wants to be held. Mom holds her for a little bit, lets her lay on her chest, and Claire will even fall asleep, but once mom puts her in her crib, she cries... like something is bugging her... but nothing is bugging her, she was just asleep... and mom holds her, she quiets right down within a split second. Spoiled rotten... but well deserving of it.
Claire had a visit from the hospice family coordinator, hospice nurse and hospice music therapy. She loved the attention.
The hospice family coordinator asked mom if it ever gets tiring having a baby around, still... (usually by now, she would be chasing a toddler). Mom thought about it it, and said, 'if Claire were a toddler, I'd be wanting another baby... this must be God's way of trying to get this need for babies out of my system... and so, I'm not tired of having a baby, and certainly not tired of Claire... not right now." Mom feels she is too old to have another baby, and Claire fills that need. For that reason, and others, she is so happy to have Little Claire in her life.
She has had people tell her, 'enjoy her while she is little, kids grow up too soon' or 'don't you wish they stayed small forever'... that would be from people who don't know about Claire's trisomy and think she's still a 3 month old. Mom just thinks, 'be careful how you wish'. She often tries to rationalize the situation, thinking of how nice not to have to buy Claire new clothes every 3 months, and still getting to hold a small baby after almost 2 years. She knows so many other mom's don't have the opportunity to hold their babies, and so feels very fortunate.
But then mom would much rather wish for Claire to be a toddler, and is sad that she's not doing those toddler things... it can get quite depressing if she dwells on it... She would love her to be a 'typical' child, but you take what you get in life and you enjoy it, for what you have been given has come from God, and Little Claire is certainly from God, given not just to mom and dad, but to the world.
January 11
22 months
  Claire was up at 3am, she had a fever, 101.5 (under arm).
The poor dear, she was so miserable. Mom gave her a decongestant after the Tylenol for her fever. Around 4am, the fever only went down to 100, so mom gave her another 1/2 dose, as mom doesn't like to give more med than needed.
She finally fell asleep just before 5am. The alarm went off at 6:30am, and mom woke the kids. They came down to see dad with birthday presents in hand (they made the cards themselves) and showered him with a 'happy birthday' song.. as Claire slept through the whole thing.
Mom helped dad get the kids off to school and then got dressed for work, leaving dad with Claire for the day.
In the evening, Claire had a nice warm tubby bath and a full tummy before bed. No fevers tonight, mom is proud.