Rachel's Journal - Month 11

Week 48	June 28, 2004 to July 3, 2004
Jul 3	Rachel slept from 1:30AM to 7:30AM...played a bit with Grandma and Daddy...napped for over 3 hours at 10:30AM. When Daddy came back with CousinB from the movies...Daddy loves it when the cousins come up; it's the only time he gets to go to the movies these day :-)...Rachel was ready to take Grandma and CousinB back home. Rachel was pretty good for the 1.5 hour ride...a bit fussy when her head got hot and sweaty; CousinB was nice enough to hold the personal fan for her while Mommy entertained the little piggie. She was happy again after she cooled down. After dropping Grandma off, Rachel wanted to visit Grandpa. Some uncles and aunts who lived closeby came to see Rachel, but she was tired and slept thru most of the visit. Mommy and Daddy decided to stay for dinner since Rachel was being so good. Rachel got fussy once they were on the road to go home. Daddy thought she was hungry even tho her feed time was half hour away. She was content with Mommy's finger for about 5 minutes. By the time they reach a service station, Rachel was still fussy, so Mommy decided to stop and start the feed. Daddy gave Rachel some orajel just in case it was the teeth; while Mommy prepared the meds and feed. After a full belly Rachel settled down for the rest of the ride home. She did want Mommy to sing to her which was just fine with Mommy. Rachel had a rather big spit up when she got home, so off to a warm bath. She was still not too tired after the nap at Grandpa's even tho it was past midnight.
Jul 2	Rachel stayed up till about 1AM, then not a peep from her until the morning. She was babbling away with Daddy in the morning. Rachel's day was like the previous...short naps with short happy times and fusses in between. She had another spit up today which prompted Mommy to start saline nebulizer treatment again. Grandma and counsinB leaves tomorrow...vacation's over for Mommy :-(...both Rachel and Mommy will miss Grandma.
Jul 1	Rachel was up for a couple of hours at 5AM. Mommy held her while she did her usual head bangs for a while. She slept till 9AM...but was fussy all morning, like she wanted to sleep more, but she'd sleep for a few minutes...wake up...fuss for sleep...another few minutes...up for fuss. She was pretty much that way until 5PM when she finally fell into a deeper slumber. She slept for 2 hours...up for a bath and some playtime with Grandma...half hour nap at 9:30PM. Rachel spit up a bit during her last bolus today...why???
Jun 30	To Mommy and Daddy's relief, Rachel was asleep by 1AM...not another sound from her. She was still sleeping when Daddy got up to go to work...slept till 9:30AM. Rachel was very happy in the morning...lots of smiles for everyone. She took a long nap between 1PM and 5PM...woke a couple of times but went back to sleep when Grandma picked her up. Rachel's got Grandma wrapped around her little fingers; Grandma's holding her all the time walking around the house...who could resist the cutie pie?! Rachel was tired by the last bolus feed and fell asleep after some fuss.
Jun 29	Mommy woke at 5AM to find Rachel lying horizontally at the bottom of the crib dozing off. Mommy left her there...Daddy took her out in the morning to play with Grandma while Mommy lazed off and got more rest. Rachel had a good day...a short half hour power nap sandwiched between a couple of two hour naps. Rachel was out by 10PM, but woke at 11:30PM. Rachel's 9lb 11oz...gained 2oz! from last week.
Jun 28	Rachel slept till almost 9AM. Rachel had a good morning...napped at 11AM for a couple of hours. She was a bit fussy in the afternoon. The speech therapist called to see if she can come over...Mommy had to say no b/c Rachel was fussing for a nap at the time...no ST this month :-(. Rachel was still a bit fussy in the evening...Mommy tried bot Mylicon and orajel. She had some quiet moments, but would fuss every now and then...made Grandma bounced and walked her around the room...hope she doesn't scare Grandma from coming back b/c Mommy sure love it when Grandma's here :-). Rachel gets 19 oz/day with 1/2 tbs fruit/veggie at each meal, 1/2oz juice/day, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed.

Week 47	June 21, 2004 to June 27, 2004
Jun 27	Rachel slept through another night...doube yeah! She woke at 8:30AM...ready to play with Grandma. Rachel took a 2 hour nap at 12:30PM...another hour nap at 4PM. She was tired by 8PM and fell asleep. Mommy tried to wake her at 9PM, but was unsuccessful. Guess the good night streak was over...sigh. The night wasn't over...Rachel woke herself shortly before her 10PM feed...a bit fussy tho. Mommy thought her teeth was bothering her...the third tooth has shown itself, it's at the bottom center, right next to the other two...some orajel help a little. She continued to fussy until a BM accompanied by a spit up (2nd of the day) just after the feed...hmmm, the sweet potatoes must have been a bit difficult to get out...what a relief! Rachel was a real happy camper afterwards. She was up till 12:30AM.
Jun 26	Rachel slept through the night...yeah! from 10PM to 9AM. A good night means a good day for the little piggie. She was very happy and allowed Mommy and Daddy the opportunity for a photo session. Taking pictures was a tiring business, Rachel had to take a nap afterwards for about 2 hours. She woke just before they were going out to Brooklyn to visit Mommy's good friend who's visiting from Switzerland. Rachel was very good during the 2+ hour drive...awake and very calm...didn't fuss at all. She was tired by the time they reached their destination and started fussing for a nap. She slept through the visit while Mommy and Daddy chatted with their friend. After the visit, Rachel stopped by GrandmaK's place in Manhattan to have dinner, then take GrandmaK and CousinB with her to stay a week. Rachel was exhausted by the time they left GrandmaK's place. She was amused by Mommy for about 15 minutes, then cried the rest of way home...another hour! Rachel fell asleep during her feed...it was about 11PM.
Jun 25	Rachel retired at 11PM. She was awake in her crib when Mommy woke at 2AM...quiet, so Mommy left her as she was. She was up at 8AM in a playful mood...napped at 11AM and 5PM for a couple of hours each. She was out for the night at ten. Rachel wanted attention all day today. She'd cried for a few minutes...Mommy picked her up the first few times; she smiled at Mommy...when Mommy got smarter and wait a few minutes; she'd quiet down and entertain herself a bit...got bored and start yelling for attention again. Rachel's allergic to peaches...she's been getting peach apples for a couple of days and there were tiny red spots on her leg...Mommy stopped the peach apples today...the spots faded. She had apples with no problem, so it must be the peaches...something about those 'p' foods.
Jun 24	Rachel slept till 5AM...it's been quite awhile since the last time Rachel slept thru the night...she woke for dirty diaper change (going like clockwork now at this time of day)...hanged out for a couple of hours before falling asleep again. Rachel woke at 9AM...napped for an hour at 1PM; she was still sleeping when the teacher was expected to arrive; Mommy couldn't wake her, good thing the teacher was stuck in traffic; Rachel woke just before she arrived; Whew! Mommy was thinking she'd had to send the teacher away...napped for another 2 hours a 5PM. Her day was mostly good; still bothered somewhat by teething pain...looks like the bottom left ones are sprouting. Rachel spit up during her morning feed so Mommy re-started her Zantac...guess she needs it. She spit up again at night when Mommy had her finger in her mouth to ease her teething pain. She was chewing on it happily when Mommy moved it to the others side of the mouth; Rachel gagged and spit up. :-(
Jun 23	Rachel was up around 2AM, maybe earlier. Mommy changed her diaper; she chilled in her crib for awhile. By 3AM, she was bored and yelled for some attention. Mommy picked her up, she relaxed and fell asleep in Mommy arms. She was up at 7AM...after some orajel, she settled down and went back sleep...hmmm, that's alot of sleep. Rachel had an so-so day...fussy at times, happy at other times. She woke at noon, then another 1 hour nap at 2PM; out for the night at 9PM. PT today was okay...she did most of the stuff without much complaint; and when she did fuss, the therapist managed to change her position so she'd calm down again. No PT next week as therapist's on vacation next week...hope she have lots of fun :-). Mommy decided to try stopping Rachel's Zantac today since she hasn't spit up for a while...not counting the peas. Mommy had ask the pediatrician before about it and he said it was okay to stop...just start it up again if Rachel starts to spit up. Rachel did spit up once after her evening feed...Mommy tried to give her 100cc instead of the usual 90cc...not good to try too many things at once...back to 90cc without Zantac.
Jun 22	Rachel had a rough night. She woke up with loud cries at 2AM. Mommy thought it may be teething pain and gave her some tylenol for the pain and to help her sleep. She settled down but woke again at 3AM in discomfort. Mommy picked her up and held her...she was not too fussy but couldn't settle down. By 5AM, Rachel was crying loudly again...Mommy gave her some mylicon and Daddy woke to take over...poor Daddy, Rachel didn't let him go back to sleep. She was up till 6:30AM and slept till 9AM. Rachel's day continued to be a bit difficult. She only took a couple of 1 hour naps. She seemed to be in some sort gas pain...Mommy gave her more mylicon...she'd settle down for awhile, then start up again. She was exhausted by 8PM and was out for the night.
Jun 21	Rachel cried twice at at night. Daddy got her the first time at 2AM. She settled down pretty quickly. She was out after Mommy rolled her over at 3AM. She yelled for a dirty diaper at 5AM...decided to stay up for an hour or so...yet another sunrse. Rachel slept till 10AM...a couple of short naps (1 hr each) in the afternoon...exhausted by 6PM. Mommy had to wake her with a bath at 8:30PM. PT today was good for about 20 minutes, then Rachel's teeth started to bother her and that was the end of the session. Rachel gets 19 oz/day with 1/2 tbs fruit/veggie at each meal, 1/2oz juice/day, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Rachel's 9lb 9oz...gained 5oz! from last week. Yippeeeee!!!!

Week 46	June 14, 2004 to June 20, 2004
Jun 20	Happy Father's Day! Rachel woke up a midnight...stuffy...Daddy placed her in the bouncer...Mommy bounced her a little and dozed off...Rachel was asleep when Mommy woke at 2AM. She woke Mommy for a dirty diaper change...no so much with noise as with smell...heeheeheee...at 5AM. She decided to stay up after that. Daddy took her around 8AM. Rachel napped for only half hour around 9AM...she was so excited about sharing this special day with Daddy. Daddy's family was supposed to show up at noon for a barbeque, but they were late as usualy and Rachel was very tired and had to take a nap when they arrived. She slept for a couple hours...spent some time with everybody...being a very good girl...went for another nap at 7PM. She was not too thrill when Mommy woke her with a bath at 8PM but settled down. She was out for the night at 10PM...exactly as Mommy had wished...what a good girl she was! Rachel spit up a couple times today, both times with peas in her formula...no more peas for her.
Jun 19	After all the sleep the previous day, Rachel was wide awake at 3AM...maybe even earlier. She stayed up making enough noises to keep Mommy alert. By 6AM, Rachel was yelling for more attention than Mommy can give...Daddy woke to take over. Daddy said she slept for an half hour at around 8AM...spent the remaining time playing with Daddy. Rachel slept for 5 hours at noon...out for the night at 9PM.
Jun 18	Rachel woke Mommy for a dirty diaper change at 5AM. She was wide awake and made enough noises afterwards that prevented Mommy from sleeping anymore; but that's ok, Mommy had 7 hours of sleep already. Mommy took Rachel out to the living room to watch yet another sunrise...really too bad there's no much too see from the house for Mommy loves those lovely sunrises. Rachel fell asleep around 6AM, but was up again in an hour. She stayed up till 10:30AM. Mommy had to wake her for physical therapy; the therapist was nice enough to make up the session on Wed. Rachel was up, but not too interested in therapy. She chased away the the therapist after half hour of work. She slept some more afterwards...she's so tire you'd think she was out last night robbing a bank or something :lol. It was 9PM before she woke up! After a bath, food, and saline nubelizer (she's very stuffy today...must be the humidity), Rachel was out again at 11PM.
Jun 17	Rachel was crying loudly at 2:30AM. It took Mommy a few minutes to realized her teeth was bothering her. Once the orajel was applied, she calmed down. It took her another hour to get back to sleep. Mommy put her back in the crib at 4AM. She was up again at 6AM, content with herself in the crib like a good little girl. Nap at 10AM. Mommy had to wake Rachel for the teacher at 1:30PM. She was still very tired and was not interested in any playing, but lasted, though unwilling for the 45 minute session. Quickly back to sleep after the teacher left...slept all the way until Daddy got home at 7PM...he was early today only b/c the server went down at work. Rachel played with Daddy for a bit; chilled out while Mommy and Daddy had dinner; Daddy gave her a bath; hanged out while Mommy and Daddy watched the Last Samurai; was not too thrill with the saline nebulizer treatment. She was out for the night at 10PM...Mommy went to sleep also and miss the end of the movie...that's ok, it's a DVD :-)
Jun 16	Rachel woke like clockwork at 1AM. Mommy got up at 1:30AM to take over from Daddy. Mommy took Rachel out in the living room so Daddy can get some quality rest. She was alert and pretty much content with sitting in the bouncer for awhile. At 3AM, she actually fell asleep. Mommy didn't want to risk waking her by moving her, so she put a light blanket on Rachel, and one on herself and was going to sleep on the sofa. Half hour later, Rachel was fidgeting, then started to cry. It looked like teething pain so Mommy gave her some orajel which calmed her, but she got her second wind and stay up...ai ya ya! She was no too fussy but demand Mommy's attention every now so Mommy was not allow to sleep. By 6:30AM, Rachel was screaming probaby b/c Mommy was too tire to hold her, Mommy woke Daddy for help. Daddy calmed her and she actually fell asleep, but woke up as soon as Daddy put her in the crib. Mommy took the opportunity to catch a couple of hours of sleep before Daddy had to leave for work. Rachel finally conked out at 9AM...she slept...and slept...and slept. Mommy couldn't wake her for physical therapy :-(. Mommy gave her a bath which woke her after the therapist left. She had slept for almost 9 hours straight! She was fussing for more sleep an hour later...Mommy didn't let her, so she fussed...and fussed....and fussed until Daddy got home at 8PM. He mangaged to calm her down for a while, but couldn't keep her awake. Mommy was mean and woke Rachel half hour later. She was calm, but still appeared very tired. By feeding time at 10PM, Rachel was ready to retire for the night...she held out till 11PM with Mommy right behind her...hopefully it won't be anything like the last.
Jun 15	Rachel decided 1AM was party time. Mommy tried various things to get her to sleep again; none worked :-(. She was up till...7:30AM! Rachel was a good girl for the rest of the day...to make up for last night. She woke at 12:30PM...very mellow...got fed...her first special ed session (to work on her congnitive skills). Rachel remained mellow for the session. The teacher was just getting to know her. She found Rachel's tickles spots and she got to see lots of big smiles and giggles. To start, she will be concentrating on getting Rachel to reach and grasp for objects. Rachel was a bit tired after the teacher left and took a nap for a couple of hours. After some food, a bath, some time in the therapy chair, Rachel chill out while Mommy made dinner. She was out at 9PM...Mommy fed her...gave her a saline nebulizer treatment (she's still a bit snorty at times)...then went to bed herself. Daddy got Rachel for the rest of the night.
Jun 14	Rachel woke up at 1AM for a diaper change then stayed up for another 90 minutes. Mommy let her sleep in the bouncer right next to her. Rachel was quiet for the rest of the night. Rachel remain sleeping when Daddy changed her and moved her to the crib in the morning. She woke just before 10AM...in time for feed...then some playtime with Mommy...a long nap in the bouncer from 1PM to 5PM...had to be woken up for physical therapy. It took Mommy almost an half hour to wake her. Mommy tried talking and touching her....stretched then back to sleep; moved her around...eyes open for a bit, then closed again; kisses on face, arms and hands...smiled with eyes close (very cute!); changed diaper...ok, getting there...half awake, that is, eyes half open; took her little fist and swing at Mommy's legs several times...that did the trick!...eyes wide open. Whew! Good thing the therapist was stuck in traffic Rachel had a terrific session. She held her head for a couple of minutes while on her belly! She rolled out of the belly position. She sat up with help of the therapist, turned her head a look around her. She tolerated all these for 45 minutes without a single fuss...now that's first! Mommy was extremely proud of the little piggie :-) No spit up today...yeah! Mommy gave Rachel a saline nebulizer treatment at night anyway so she can be as comfortable as possible. Rachel was out for the night at 10PM. Rachel gets 19 oz/day with 1/2 tbs fruit/veggie at each meal, 1/2oz juice/day, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Rachel's 9lb 4oz...gained 1oz from last week. Slllloooooowwwww!!!!

Week 45	June 7, 2004 to June 13, 2004
Jun 13	Rachel slept from 11PM to sometime between 2AM and 3AM. She woke Mommy from a dirty diaper change at 3AM. She was not able to back to sleep afterwards...looked so cute Mommy was tempted to break out the camera :-)...Daddy got up at 5AM to take over...good Daddy! Rachel woke Mommy for food at 10AM...big messy spit up 15 minutes after the feed. Ater Mommy gave her a bath followed by nebulizer treatment with saline, Rachel was really comfortable and fell asleep...about noon...maybe she thought it was nighttime...the girl's night/day seemed to be switched again. A nice quiet afternoon at home. Rachel slept till 4PM...some happy playtime with Mommy and Daddy...nap at 7PM. It was another hour before Mommy realize they had forgotten to feed Rachel at 6PM...they were engrossed in watching Lorenzo's oil...wonder why she didn't scream for food like she normally does. Rachel slept thru the feed...Mommy had to wake her at 9PM...chill out for awhile, then more playtime...she was out again at midnight. Mommy started Rachel on Apples.
Jun 12	It took an half hour to register...another half hour wait...then finally see the doctor...the same one Mommy had spoken to...he was rude though, he'd walk away while talking to Mommy or talk to his colleagues or the nurses...just doesn't seem to give Mommy and Daddy his full attention at any time. Anyway, he checked volume of water in the ball...Daddy had put in 2cc like the surgeon had done...the doctor said it was too little and injected 5cc...no explaination why the difference. He then ordered an x-ray of the abdomen...it looked good and Rachel was released to go home...at 1:30AM...go thing too b/c Rachel was getting fussy...passed her feeding time. No to bad for Rachel's first ER experience. Rachel fussed the 40 minute drive home, even though Mommy set up the feed for her in the car. She finally settled down and fell asleep around 3AM. Mommy soon followed...Daddy had already gone to bed as soon as they got home...everyone was simply exhausted. Mommy, Daddy and Rachel were invited to a barbecue later today in NJ...it's a gathering of some of the Trisomy18 Moms around the area...Mommy had looked forward to meet them, but had to cancel :-(...Mommy and Daddy just want a relaxing uneventful day at home. Rachel was the first to wake at 9AM, Daddy place her in the bouncer where she was awake but calm and went back to sleep himself. Rachel hanged out by herself for a while...by 11AM she was hungry and let Mommy know. Mommy fed her and then gave her a bath...she stayed up for a bit playing with Daddy. Rachel slept for 1PM to almost 6PM...Mommy decided it'd be a good time to take her for some pictures at Walmart...they have a special package for only $2.88...the backdrop's not that great, but hey, what you want to 3 buckes :-). Of course, more than one shot was taken, and of course Mommy couldn't resist getting both...so they end up spending an extra $10 on the cards with the 2nd pose. Rachel had a couple of big spit ups...once after she returned from the ER; another after her morning feed...could be Mommy's giving her too much water after the feeds and/or there's mucous buildup at the back of her nose or throat. Mommy backed off on the water and no more spit up for the rest of the day. Mommy give her a nebulizer treatment with saline anyway...another list mom had posted this worked to break up mucous on her daughter.
Jun 11	Rachel decided to party all night...up from midnight to 5AM. Daddy played with her until 2AM when Mommy took over. Mommy was in no mood to play so Rachel was rather fussy...Daddy probably didn't sleep well due to all the noise. Rachel slept till 9AM...Mommy placed her in the bouncer and she was off the dreamland again...that's 2 days in a row she did that...Mommy thought she might be a bit congested when lying down. Rachel slept all the way to the Children's Rehab Center. She was supposed to have PT first then see the doctor for developmental eval, but being always late...not Rachel's fault this time, Daddy was late getting home...he tries to go to ALL Rachel's doctors' appointments...he's an EXCEPTIONAL Daddy...the therapist couldn't see her until after the doctor. Rachel woke up just in time to see the doctor...she was rolled arond a couple times...picked up in standing position a couple of time...then irritated to cried, a very loud angry cry. Basically, Rachel's doing good...no sign of respiratory difficulties even after being 'tossed' around...the doctor's will order a stander when Rachel gains more head control...she still has a bit of a bobble head...the physical therapist will determine when Rachel's ready for it...Rachel will most like need foot splints as well. The doctor also mentioned Rachel can be admitted to the school in March of next year...that's 5 hours day form 9-2. It'll give Mommy a much need break while Rachel gets all the therapy and stimulation she needs. PT afterwards was great...Rachel was intently studying to new environment while the therapist worked on her sitting, rolling, and belly position. Mommy and Daddy took Rachel out again later in the evening to pick up some pictures that they had sent away for development...yes, Mommy still take pictures with film. Rachel spit up just as they go in the car to leave. Rachel was excellent on the outing but got a bit fussy as they were coming home. She didn't setting down and continued to fuss through her feed. At the end of the feed her G-tube button popped out :-O...Mommy was holding her and saw formula oozing out of the stoma...Rachel was bawling...good thing Daddy was home!...he handed Mommy a cloth to put pressure on the stoma sit, then calmly picked up the button, rinsed it and placed it back in the way he saw the surgeon did it on Wed. Rachel calmed down after the button went back in. Mommy then called to doctor to make sure they did the right thing. The oncall doctor recommended that they go down to the ER so the doctor can check the placement, make sure it's in properly...that was at 10PM. It took Mommy and Daddy almost an hour to get out the door as Rachel spit up just as they go in the car (de ja vou?), then she decided it's time for a BM. They finally got to the ER around at 11:30PM.
Jun 10	Rachel was up for a couple of hours...so Mommy thought. She was crying at 3AM...Mommy couldn't soothe her with holding and bouncing...since she was drooling quite a bit with her hand in her mouth, Mommy tried some orajel...she cried for a bit longer and eventually settle down at around 3:30AM, but still awake. Mommy held her till 5AM and put her down when she started to drift off, but her eyes flew open as Mommy walked towards the crib. She was calm after Mommy placed her in the crib and turned on the dreamscape soother, so Mommy went back to bed. Daddy found her asleep in the morning. She woke Mommy up at around 9AM. She drifted off the sleep again after Mommy placed her on the bouncer. Rachel woke at 1PM, quite happy. She slept for another 4 hours at 4PM...played a little, bath, feed...asleep by 10:30PM.
Jun 9	All the sleeping during the day must have contributed to a wide awake Rachel at night. She woke Mommy around 2AM. She was turned 180 degrees in the crib when Mommy checked her. Mommy rotated her back, turned on some soothing music for her and went back to sleep. Rachel was fussing again at 4AM...Mommy didn't think she sleep any between 2AM and 4AM...wanted to be held. Mommy took her out of the crib...she did some head bangs on Mommy's shoulder...at one point Mommy thought she was asleep, but her eys flew open as soon as Mommy moved to put her down. Mommy was very tired by 5:30AM and Daddy got up to take over ...he's a wonderful Daddy. Rachel did not sleep until 8AM...slept all the way to the doctor's office...started to cry as soon as Mommy place her on the table in the doctor's office...could it be she knew what's coming? It was time for the button...Rachel cried through the process...it was quick, took maybe 15-20 minutes...she cried so much the doctor ordered some Tylenol for her. The button's really cool...no more tube hanging out unless it's feeding time. It took Mommy several tries to get use to using it, Rachel got alot more air than necessary as a result :-(. She finally settled down when they were almost home...she slept for a long time...till 4PM...woke in a good mood for physical therapy. Rachel worked on alot of sitting and rolling...no belly work as the G-site might be a bit sore. Rachel was still tired and took another nap after her 6PM feed. Mommy had to wake her with another bath at 9PM. Doesn't look good for the night. Mommy started Rachel on carrots today...not as much calories as the bananas, but it's good to have variety.
Jun 8	Rachel woke up at 1AM...just before Daddy was about to go to sleep...Daddy changed her, stayed up with her a little and as she was calm, went to sleep. At 2AM, Rachel woke up both Mommy and Daddy with her cries...Daddy was too tire to pick her up, so Mommy went and got her. She was calmed while being held, but had her eyes wide open...Mommy attempted to put her down a couple of time unsuccessfully, so Rachel remained in Mommy's arms until she finally tired out after 4AM...she was up again at 8AM...asleep by 10AM...Mommy's not sure of what to make of this sleeping pattern. Rachel received some special visitors today...a mom from the trisomy18 support board who lives nearby came visiting with her two young children...an adorable baby boy of 3 months and a rambunctious little girl of two years. It was special for Mommy to actually meet someone who had went through similar circumstances not too long ago. The visitors must have tired Rachel out as she slept the whole afternoon afterwards. Mommy woke her with a bath in the evening...she stayed up till midnight.
Jun 7	Rachel woke up once at 3AM. Mommy picked her up and held for around 20 minutes. Since she was calm, Mommy put her back in the crib. She was very good...didn't fuss...Mommy was able to go back to sleep...Rachel must have too since Daddy found her asleep in the morning. Rachel had a dandy day...slept for 3 hours in the late morning, a couple of half hour naps later...she was out by 10PM. While awake, she enjoyed some Baby Mozart, batted at the toys on the gymini and just plain chilling. The temp's getting warmer and Rachel's the first to show it...sweaty head. Mommy received word that the special education teacher will start next week...tues and thurs, plus physical therapy on mon and wed, the little piggie's got a full schedule. PT today was rescheduled to Friday at the CHC (Children's Rehab Center) before Rachel's appointment with the doctor there for a follow up evaluation. Rachel gets 19 oz/day with 1/2 tbs fruit/veggie at each meal, 1/2oz juice/day, 4mg Furosemide (Lasix)/twice daily, 20mcg Lanoxin (Digoxin)/twice daily, 0.7cc Zantac/twice daily, and Mylicon as needed. Rachel's 9lb 3oz...gained 1oz from last week.

Week 44	June 4, 2004 to June 6, 2004
Jun 6	Don't know about Rachel, but Mommy and Daddy had a good night...heeheehee. Rachel woke up at 1:30...all wet from a soaked diaper...Mommy changed her diaper and outfile, put her back in the crib, all happy and alert...turned on some soothing music...Mommy went back to sleep...nobody knew what Rachel did. She was still sleeping...well on the verge of waking...doing her stretches...at 10AM...hoped she had a good night sleep...Mommy and Daddy certainly did :-). Mommy and Daddy needed to get some shopping done in the afternoon. They packed the diaper bag, the feeding pump, get Rachel all ready in the carseat. Mommy took Rachel, like she always did, and off they went. When they arrived at the destination...where's the diaper, the feeding pump? Ai..ye..ya...Daddy looked at Mommy like she can carry Rachel, the diaper bag and the feeding pump...Daddys...can't never blame themselves! At least Mommy and Daddy didn't take the bags and forget Rachel instead :lol: Of course the emergency bag in the car wasn't properly packed either, missing the syringes for emergency feeds. Well, so much for shopping...they turned around and headed back home...just a nice drive in wet weather. Rachel did not sleep much during the day...a few short naps. She was completely out by the last bolus feed at 10:30PM.
Jun 5	Ah...Rachel was bad at night. She woke Daddy before 3AM...crying...still crying after Daddy changed her dirty diaper and gave her orajel...woke Mommy, too. Rachel finally calmed down shortly after Mommy took over, but she remained awake...Mommy tried to put her down first in the crib...15 minute later...crying...quiet down when picked up...put her down in the snuggle rest...10 minutes later...fussing...ok, on the shoulder she went. Rachel finally fell asleep shortly before 7AM. She stayed asleep until Mommy put her in the carseat to go out after 11AM...to meet a trisomy13 boy, Brendan (almost 3 years old!) in White Plains. Rachel was very good through the day...probably because the weather was to her liking...cloudy with temps in upper 60's. Mommy and Daddy enjoyed lunch with Brendan's Mom and two sisters...they were adorable girls (the older one reminded Daddy of Dakota Fanning, very cute!)...so was Brendan, who was very well behaved. A little shopping afterwards...Mommy was finally able to find Rachel a couple of hats at Hanna Andersson (another tip from a mom on the Trisomy list...those moms just has tons of good tips) that actually fits her tiny little head, size xxs! Rachel took a couple of short naps before falling asleep while Mommy was shopping around 4PM. She was still sleeping when they reached home...slept thru her next feed...woke up very content at 7PM. She was out for the night before 10PM...hopefully not a repeat of the previous night.
Jun 4	It's been 10 months...that's over 300 days! Rachel woke up at 4AM...Daddy tended her, by 6AM he was exhausted and Mommy took over...Rachel quieted down on Mommy's shoulders...did some head banging for 15-20 before settling down to sleep. She slept till 10AM...late for the little piggie...only a couple of short naps today...2hrs at 11:30AM...1 hour at 5PM. Physical therapy was okay today. Rachel had been up for a while by the time the therapist came at 4PM. She did managed to do some sitting and belly position before Rachel started fuss. Rachel was out immediatly after the therapist but did not sleep for long. She wanted to sleep at 8PM, but Mommy had to give her a bath, then forced in some pictures with the cake for her 10 month celebration...sometimes Mommy can be a pain. Rachel finally was able to sleep in peace by 10PM.