Claire's Journal -- 22nd Month
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.|
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.
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.
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.
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.
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.
Happy New Year!!
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.
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!
was up about 4:30pm, and decided to feed Claire a little more.
She woke Claire and gave her meds including her decongestant
slept through the night, so did mom.
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
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.
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.
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.|