Month 13-15
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| Month 15 | October 4, 2004 to November 3, 2004 |
| Week 66 Nov 1- Nov 3 |
Rachel continued her night time activities thru the week. This stretch has lasted longer than any of her previous ones...it's been pretty rough on Mommy...who's longing more rest...hopefully things will get better soon. |
| Week 65 Oct 24- Oct 31 |
Rachel started the week by staying up between 2-5AM; by the end of the week, she was had worked up to staying up till 7AM. Mommy was exhausted by the time the weekend rolled around. Daddy took over Rachel's duty most of the weekend to allow Mommy some much needed rest. Rachel's got an excellent Daddy. She's been generally pretty fussy lately, but no sign of any new tooth yet. Mommy's at a loss trying to figure out what's been bothering her. Mommy did noticed she has a new cry, sometimes close to a shriek that comes in short bursts. Mommy thought it may be her attention getting cry, but it usually continues after she's picked up; it stops tho, shortly if she's ignored; quite strange. Anyway, Rachel spent so much energy staying up at night that she slept thru Halloween...no trick o' treat for the missy this year. Rachel got thru PT ok this week...the therapist thought she saw some interest in toys. Rachel's 10lbs 15oz...gained 3oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 1cc Zantac/twice daily, and Mylicon as needed. |
| Week 64 Oct 18- Oct 24 |
Rachel did pretty well all week sleeping between Mommy and Daddy at nights with the exception of Tues night...after her first of two flu shots. Rachel was expecially estastic when the Bosox won the World Series...gooooooo sox! By the weekend she was more fussy...Mommy thought it may be another tooth, but the orajel didn't always help...neither did mylicon nor tylenol. She was reverting back to the night life again :-(.
Rachel's 10lbs 12oz...no gainfrom last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 1cc Zantac/twice daily, and Mylicon as needed. |
| Week 63 Oct 11- Oct 17 |
Rachel (and Mommy) continued to get over her cold. She was finally able to sleep soundly by midweek. At nights, she's getting to sleep between Mommy & Daddy these days; Daddy brought her to bed one day at 1:30AM...she was quiet for a couple for hours before waking Mommy to hold her to sleep. After that, when she woke at the middle of the night...generally around 3AM...Mommy'd placed Rachel beside her and continued to snoozed away...nobody knew Rachel's activities between then and when Daddy wakes in the morning :-P; everybody's happy in the morning tho! Rachel's back to her normal diet...still have the spit up once a day, but getting her loss weight back. Mommy finally get to start giving her the vitamin recommend by the ped (didn't wish to give her anything new during her illness which may cause spitups)...nasty smelling stuff; must taste nasty, too; Rachel bypassed both with to tube feed...heeheeheehee :-P. Rachel had another visit from angel Ryan's mom and sister. Rachel was very happy they came. It took her a few minutes to get rid the grogginess from her short nap. She then welcomed the visitors with smiles and giggles. Mommy enjoyed the visit immensely...she got to play with a very active and happy 7 month old...chatted with a great person...and watched baby Ryan's videos. Mommy enjoyed the video...it gave her a chance to get to know baby Ryan...such a precious little package! PT was cancelled this week...didn't want to pass anything to the pregnant lady :-). ST came by instead...she was very impressed with Rachel's acceptance to oral feed (cereal mixed with formula) using the Nuk brush. She wanted to come again next week and if Rachel shows the same progress, she wants Rachel to have a swallow study (to make sure there's no aspiration into the lungs) before getting more aggressive with the therapy which shall mean more session...once a week instead of 2x a month. Mommy's absolutely ok with that. Rachel was in a pretty good mood for the special ed teacher even tho Mommy thought she was tire. She stayed awake for the whole session...kneading shaving cream between her hands; watch and touching bubbles; enjoying all the songs. She had a long nap after the teacher left. Rachel's 10lbs 12oz...gained 4oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 1cc Zantac/twice daily, and Mylicon as needed. |
| Week 62 Oct 4- Oct 10 |
Rachel's now 14 months old. Unfortunately, her fever lingered most of Monday. It was however lower than the previous day at around 99-100 anxillary. Mommy and Daddy took her to the doctor...lung's clear, ears were fine, throat not red and belly soft...likely a viral infection. Doctors recommendations; tylenol for fever...0.8cc not to exceed 4 times daily...Mommy was giving her 0.4cc which explain why it wasn't quite effective the previous day); children's Dimetapp cold and allergry for the other symptoms...1/4tsp every 8-12 hours. The doctor's really careful with Rachel's medications b/c of her heart condition. A few housr after taking both meds with the correct dosage, Rachel calm down quite a bit...no as irritable...less moaning and groaning. She still couldn't get together a nice long nap/sleep...sneezes and coughs woke her up every time...the poor, poor little piggie. Rachel was able to sleep, though not soundly Mon night, most of Tues and Tues night. The sneezes and coughs still woke her at regular intervals, but she was able to go back to sleep herself most of the time...the other times she'd calm down in Mommy or Daddy's arms. Her fever was gone...a big sigh of relieve for Mommy! She's still not well but is certainly getting better each day. Mommy's got her bug as well so she's not suffering alone ;-) Rachel continued to improve. She slept relatively well on Thurs and Thurs night. Mommy heard her multiple sneezes/coughs a few times through the night, but she was able to continue her slumber without any problem. She's pretty alert when awake and can even manage a tiny smile or two...haven't seen one of those in a week! Mommy's no longer need to diluting her formula with pedialyte, but still no solid yet...taking things slowly is always best for Rachel. Rachel did pretty well on the weekend. She still have an occasional sneeze/cough, but was pretty much back to her old self. Mommy re-started her on solids on Sunday. She lost 4 oz this week :-( All therapies were cancelled this week due to her illness. Rachel saw her cardiologist on Sat...no change again in her condition. It was a quick visit and she won't have to see him again for another 4 months. :-) Rachel's 10lbs 8oz...lossed 4oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 1cc Zantac/twice daily, 1cc poly vi sol/once daily and Mylicon as needed. |
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| Month 14 | September 4, 2004 to Octoer 3, 2004 |
| Week 61 Sep 27- Oct 3 |
Rachel slept much better at night. By Tues, she was waking only once at night...around 4AM...for a diaper change. She slept from 7:30PM to 7AM on Friday night! However Rachel showed symptoms of a terrible cold on Sat :-(...perhaps she picked up the bug that had bothered Daddy last week. She was miserable all day...sneezing and a runny nose. Daddy had to use the syringe bulb to suction her nose all day and Mommy did the same at night. Rachel hated the bulb...turned her head away and cried at the sight of it...but it must be done. Her poor little nose must be really sore. As a result Rachel didn't sleep well on Sat...probably slept 2hrs total during the day and had some very short naps at night. She was very irritable...only okay on Mommy or Daddy's shoulders. She can fall asleep there, but any movement would wake her up. She'd sneeze frequently which also woke her...the poor little piggie. Rachel spit up after all her bolus feeds on Sat, so Mommy decided to give her 1/2 formula 1/2 pedialyte the next day...hoping she can keep it down. By 1PM, mommy thought she was a bit warm and took her temperature. It was 100.9 anxillary...Mommy gave her a dose of tylenol. Her fever persisted during the day. By 5PM, it was still at 100.9...more tylenol...Daddy put a cool towel on her head as well. Her temperature went down a bit by 8PM at 99.6. It was 99.8 at 9:30PM...another dose of tylenol...will have to call the doctor if the fever persist in the morning. Her voice had became hoarse from all the crying and/or the bug. She continued to have trouble sleeping...taking fifteen minute or half hour naps...usually awaken by a sneeze or cough. The runny nose had subsided a bit which was good as her nose had became very sensitive...still alot of sneezing...gagged all afternoon, but only a very small spit up in the afternoon so the pedialyte/formula mix did its job. PT this week was ok. Rachel wasn't exactly fussy, but did complaint whenever the therapist put her to work...the little lazy bone. She saw her speech therapist as well, but was cranky for her. Could it be Rachel's starting to recognize faces? She had her first real session with the new Special Ed teacher on Fri. Rachel took a long time studying her; she wasn't particularly enthusiatic with the play, but at least wasn't too fussy. Maybe she'll enjoy it more when she get to know the teacher better. Rachel saw her physiatrist on Thurs. She was really pleased with Rachel's progress. She recommended a more aggressive oral feeding approach...need to stimulate Rachel's taste buds. Mommy gave Rachel some cereal formula mix (5-10cc formula with 1-2 tsp cereal) using a nuk brush the next day at an hour before her bolus feeds...in case she gags. Rachel seemed to like it...she took all of it twice and half the third time. Mommy was quite proud of the piggie, but had to stop on Sat due to her cold. The physiatrist also order a portastand...a device that helps her stand and sit...to be made for Rachel. That'll be cool as Rachel enjoys the standing position Pediatrician checkup on Fri...11lbs and 25.75in...time for the next size (6-9 months) outfits! Rachel's doing great...just continue her current care. He ordered some vitamins, poly vi sol (1ml/day); increased her Zantac to 1cc/twice daily. Mommy asked about a kidney scan for Wilm's Tumor again and he gave he prescription this time. The insurance company has been ignoring the doctor's request for the RSV shots for Rachel...have to follow up with them. Rachel continued daily spit ups. Rachel's 10lbs 12oz...lossed 2oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 60 Sep 20- Sep 26 |
Rachel continued her nightlife. She was able to sleep during the day tho...as a matter of fact...all day. Mommy let her as Rachel's a much happier baby with enough rest...even if her happiness was during the wee hours of the morning. Daddy wasn't feeling well all week...by Fri, he can hardly speak...went to the doctor; a sinus infection...doctor gave him some anti-biotics. He was in bed all day Sat and Sun, but felt much better by Mon. PT this week was great. It's late in the day, so Rachel had enough sleep and energy to work with the therapist. Rachel continued daily spit ups. Rachel's 10lbs 14oz...gained 3oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 59 Sep 13- Sep 19 |
Rachel started her night parties again :-((. By the end of the week, she had worked up to staying up all night. She wasn't able to sleep for more than 2-3 hours at a time, either. As a result, Rachel was rather cranky all week. Only one PT session this week...therapist cancelled due to illness (well...not really...Mommy found out it later it was morning sickness...congratulations to her!) Mommy had to cancel her speech therapy due to Rachel's sleeping pattern :-(. Rachel was supposed to visit Angel Ryan's family in MA on Saturday, but she was up all night and Mommy had to cancel the trip...a real disappoinment as Mommy had looked forward to seeing them again. But it may be for the better as Daddy woke up sickly the next morning. Rachel continued daily spit ups. Rachel's 10lbs 11oz...gained 1oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 58 Sep 4- Sep 12 |
Rachel turned 13 months on Sept 4! She had an excellent
week...slept thru most nights...hurray! She'd fall asleep around 10-11PM;
get up the next morning around 9-10AM. There were a couple of nights when
she needed Mommy to hold her to sleep after a diaper change...she's
spoiled that way and probably many other ways as well :-P Mommy didn't
mind a bit as it's the most comfy thing to hold Rachel while she sleeps.
There were also a couple of nights when Mommy woke...around 3AM...and
heard Rachel grunting...it's a relatively new thing she does her when
she's tired; she has both arms up above her head with the hands locked;
grunts...unh, unh, unh as she rolls side to side from her waste down.
Mommy didn't bother to get up and Rachel must have fell asleep eventually
as there was no additional disturbance from her. Her awake times were good
as well. She spent some time each day on her chair with the activity atom;
some time on the floor chilling; some time on the bouncer; some time on
Mommy before naptime...usually around 1-2PM; hope the pattern
continues! It was a beautiful weekend; Daddy decided to take some pictures outside. Rachel was not in the mood for posing; just content lying on the blanket with the cool breeze blowing. The back yard is slight slope and Daddy placed Rachel on the upper edge of the blanket; both Mommy and Daddy watched with delight as Rachel rolled on to her belly, then her back, her belly again, and on her back before hitting the lower edge of the blanket :-D Rachel did it again for the video camera, then a couple more times for fun before complaining. Only one PT session this week b/c of the Labor Day holiday. Rachel was not thrill about it...must have thought she gets another week of vacation ;-b. The therapist worked on some easy stuff and quit before Rachel got too fussy. Rachel continued her occasional spit ups. Rachel's 10lbs 10oz...gained 3oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Month 13 | August 9, 2004 to September 3, 2004 |
| Week 57 Aug 30- Sep 3 |
Rachel had an ok week...she had a few rough nights; got better for the
weekend...sleep thru the night all weekend...YEAHH! GrandmaK and CousinB
came up to visit for a week. Mommy was very greatful for the break and
Rachel loved to be held by GrandmaK all day long. Rachel had not been a
very happy camper when she's awake lately; not too fussy, but not the
smiley giggly little piggie either. Mommy had no clue what's causing her
uneasiness :-(. The tooth Rachel worked on last week and part of this week
finally broke thru towards the end of the week...yeah! now there's 5
teeth. PT this week was not a success. Rachel needed to be woken up both
times and was not in a mood for any work. The therapist worked her a
little and quit before causing too much distress. Rachel was nice and
awake the speech therapist...but still no progress. Rachel continued to
spit up off and on...most of the time once a day...she spit up 3 times on
Friday; why??? no idea...none the next day...quite strange. Rachel's 10lbs 7oz...gained 2oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 56 Aug 23-29 |
Rachel had a pretty rough week; working on another tooth. It's amazing
how it only bothered her at nights; slept thru the day most of the
week...pain and screaming at nights :-(...nothing helped during some of
those nights; not orajel, mylicon, nor tylenol...the poor piggie. No PT
this week as the therapist was on vacation. The speech therapist came
after a month's absence...not much progress there; tho Rachel does not
reject the pacifier now. She doesn't know how suck on it; just plays with
her tongue for a bit and then pushes it out with her tongue. The new thing
for her now is blowing raspberries...she can do them pretty
well...with lots of bubbles and saliva flying all the place...very cute to
watch :-)). Rachel had only one spit up from Mon-Fri, but spit up once
each day over the weekend...doesn't look like thats ever going to go
away...sigh! Rachel's 10lbs 5oz...loss 1oz :-( from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 55 Aug 16-22 |
Rachel continued her nighttime parties this week. She had good PT
sessions. The therapist brought along a BIG ball for her to do work on.
Rachel didn't seem to mind it. She continued to work on sitting, rolling,
bearing weight on elbows, hands, and legs. Sunday, the 22nd was Rachel's first birthday on the lunar calendar...happy birthday...again :-). That night, Rachel showed Mommy and Daddy she can roll on to the belly for the first time! Of course, nothing can entice her to do it again. Rachel continued to have daily spits this week...some pretty big ones (half the feed). She did stop over the weekend, hopefully it won't start up again. Rachel's 10lbs 6oz...gained 3oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
| Week 54 Aug 9-15 |
Rachel shifted to her nighttime schedule this week...it seemed to
Mommy she sleeps good for 2 weeks...parties for 2 weeks...ready for
another 2 weeks of rest... She'd napped for a couple of hours at 10/11PM;
stay awake for most of the night or till dawn; sleep most of the day.
Other than her erratic sleeping patterns, Rachel continues to do well. She
did very well with PT this week; shown the therapist that she can
rollover from her belly with a bit of push to start. The therapist
noticed her 4th tooth...the upper front...had broken thru. Rachel
started to spit up once a day again towards the end of the week. She
sounded a bit snorty, so it's probably stuff in her throat again. :-(
Rachel's 10lbs 3oz...gained 2oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie/meat at each meal, 1/2-1oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |
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| Week 53 | August 4, 2004 to August 8, 2004 |
| Aug 8 | Rachel slept from 11PM-1AM...stayed up with Mommy to watch a movie. She was still awake when the movie ended at 3AM. Mommy put her down in the crib and turn on the dreamscape soother for her. She was quiet enough for Mommy to sleep. Nobody knows when Rachel fell asleep, but she was out till 10AM; in a very good mood. It was a gorgeous day...low humidity and cool temp. Rachel spent sometime on the deck relaxing in her bassinet. A nap from 3PM-6PM, then more time on the deck again. Rachel had another birthday cake today...what a special girl!...3 cakes! One of Rachel's uncles' family couldn't make it to her party last week, so they came and celebrated today...it was nice :-) Rachel fussed for another nap at 9PM and was out for 2 hours...looks like another movie night. |
| Aug 7 | Rachel Rachel slept from 2AM-4AM...very fidgety until 9AM when she finally fell asleep again. She was up a 1PM...another nap from 3PM-7PM...sort of like yesterday. She was good in the evening. No spit up today. |
| Aug 6 | Rachel slept until 6AM...up for a wet diaper change...stayed fussy for a couple of hours before falling into a deep sleep. She slept all day with a couple of hours of playtime at 1PM. She woke around 6PM in a very good mood...had some fun playing with her toys and chilled out a bit. Another spit up today...wonder if it's the bit of apple sauce that Mommy gave her by mouth...no oral feeding tomorrow. |
| Aug 5 | Rachel woke at 4AM and was fretful for the rest of the night. Mommy
had to hold her for a couple of hours. She was fussing again half hour
after Mommy put her down. Daddy got her this time and let her sleep on his
belly. By 8AM, Rachel wanted to play...Mommy was too tired...Daddy had to
get ready for work...Rachel was not a happy camper until Mommy got up to
play with her :-(. Rachel went for a nap at 10AM, but did not sleep very
well; kept waking up at the slightest sound or movement. She was up at
1PM, but still looked pretty tired. Rachel was quite mellow for her
session with the new special ed teacher...until the end...must be tired.
She had a much more restful nap after the teacher left...for 3 hours.
Rachel was refreshed by the nap and spent the evening with her toys. She
was fussy at bedtime; after about an hour of head banging on Mommy's
shoulder, she finally settled down to sleep at 1AM. Rachel spit up once today after her 6PM feed. She was extremely happy afterwards, like she just got rid of something really bad. |
| Aug 4 | HAPPY BIRTHDAY! Rachel is offically ONE YEAR old! She had a
great night. She was up when the feed stopped at 8AM, patiently waiting
for someone to get up to play with her. She was tired by 10AM and drifted
off for a 3.5 hour nap. Daddy had taken the day off the spend with his
little piggie on her birthday. Rachel was very mellow after her nap. Off
they went to the mall to take some professional photos by the Picture
People. Rachel wasn't overly excited so the pictures didn't have her great
smiles, but they were okay...at least she didn't fuss. Mommy figured it'd
be a long time...like another year...before they'd bring Rachel for
another sitting, so she bought a few poses...spent way too much money, but
it's Rachel's first birthday...THAT'S something very special! The spent an
hour browsing the stores while waiting for the pictures. Rachel was
chilling in the stroller; being a very good girl. She had a short
nap...about half hour...while Mommy was picking the pictures. Rachel had another cake today; it was supposed to be a free baby birthday cake from the local supermarket. However, when Mommy went to pick it up, she was informed they didn't make it :-O. Mommy was very disappointed they'd mess up something so simple even though they gave her a much larger cake. Rachel was very tired after the cake and fussed for sleep. She woke an hour later for food, then stayed up for a while...wanting the day the last as long as possible :-P Rachel spit up once today. Rachel's 10lbs 1oz...gained 2oz from last week Rachel gets 19-20 oz/day with 1 tbs fruit/veggie at each meal, 1/2oz juice/day, 4mg Furosemide (Lasix)/twice daily, 25mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. |