February 29, 2008:  I am now adding on the top so you do not have to scroll all the way down for the new updates.  Sorry this has taken so long to update but my computer has been in the shop for 3 weeks with probably another 3 more to go.  Rebecka has been bringing hers over for me to use when she comes over thank goodness.  Drew has been doing great.  We think she is teething as she has been running random temps and we can see the tips of a couple bottom teeth trying to push through.  Also she has been having fussy periods.  When Mom takes her trach cuff down during the day we can hear her sounds and she is actually whining or crying at times lately.  I must admit I like to hear her whine or cry.  She has been so quiet since birth that it is nice to hear and she is so easy to console.  We just have to smile and talk to her and she is back to her normal happy self.  PT brought her a molded foam tumble form chair that Drew just loves.  She can sit up tall as it is molded to her body and supports her. She loves being able to see all that is going on around the house,  she hates to miss anything.  When she is in her room one of her eyes is always on the door to see who is coming in or what is going on out there.  With this chair she is easy to move around and sit in different areas of the house. She is such a fighter also.  When we are holding her in a sitting position she can now hold her head up for 5 minutes at a time,  that is very hard work for her!  She has a couple of doctor appointments coming up next week so we can not wait to see how much she weighs.  The equipment people are coming in a couple of weeks also to measure Drew for a new carriage.  She needs one with more head support and also sturdy enough to hold her ventillator and other equipment.  Things are also moving along quickly on her new room.  All that is left is finishing work so we are thinking in a few weeks it will be ready for the occupancy permit.  She will love the new room as it is so open and she will not miss anything going on as she will be right in the middle of everything there.  With so many windows it will be like being outside!   

July 13, 2007:  HAPPY BIRTHDAY!!!  Immediately clear something was wrong as there was just a weak cry and no movement.  Not allowed to see anyone but mom, dad and grandparents while kept in special care nursery at St. Vincents.
July 15, 2007:  Emergency transport to Memorial Hospital NICU unit.  Trouble breathing and had an episode that they were unable to deal with there.
July 26, 2007: Transported to Childrens Hospital in Boston in the NICU unit. After some scary episodes they wanted her to go here for some more detailed testings.  No diagnoses found but another scary episode so they changed the level of care of her breathing help.  Nothing more they could do after she was stable so sent back to the Memorial NICU to grow for awhile till big enough to do a muscle biopsy.
August 6, 2007: Transported back to Worcester.  I am still under 6 pounds so time to grow and get stronger to go back for  more tests in Boston.  The nurses are all wonderful and love caring for me.  My eyes just pull you in when I look at you and when I wake there is usually a crowd looking at my beautiful eyes.  I just flutter my long lashes and they all melt! 
September 11, 2007:  I am now big enough for my transport to Boston Childrens again.  I do well on these "field trips".  I am over 7 pounds now and big enough for the surgery on the muscle biopsy.  Also need a G-tube for feedings as I am sick of this tube down my nose!  Many of the nurses came to see me that knew me before to say how big and alert I am!  Many wonderful nurses here also that tenderly care and advocate for me and explain everything in detail to my family.  Will miss them greatly when we go back to Worcester but want to be closer to home where all my visitors can come easier.  
September 20, 2007: Muscle biopsy was finally done. Some scary moments with breathing during surgery but Drew is back in her room and settled now.  We are hoping for some results within the next 2 months although the doctors have not guaranteed that we will get any definitive diagnosis.
September 21, 2007: A saliva test was done which had little results since Drew did not swallow in the hour that the test was performed.  We were able to learn that after they put a probe down her throat, her throat anatomy is considered normal so it is strictly the low muscle tone to be blamed for her lack of swallowing.
September 23, 2007: Last evening was rough for Drew as many of you have heard.  After a rough episode, she has been temporarily intubated and was able to rest for the night.  We are unsure of when the intubation tube will be removed and will keep you posted as the day and night progresses.
September 24, 2007:  Drew had a good night last night and is back on her old waking schedule today, she was awake and alert for three hours this morning.  She is still intubated as they want to protect her airway a while longer as they think she may have some pneumonia going on again.  So back on anti-biotics.  They are putting together a family meeting for later this afternoon for some concrete decisions to be made.  Will let you know.

Had meeting and everyone agrees in order for Drew to get strong enough to come back to Worcester and eventually home she needs to have the tracheostomy done and also the G-tube for feeding.  The doctors are trying to figure out which G-tube would be the best for Drew and the surgeons will figure out when she is strong enough to go through a surgery.  She will stay intubated for the time being to protect her airway.  We have been in Boston for two weeks now and are hopeful the surgery will be soon so we can get back home.  Mommy got to hold me today after not being able to for a couple days! I just love to cuddle and melt into her arms and sleep!  (not sure who loves it more, me or mommy!)
September 26, 2007:  Drew sat up in a bouncy chair for a couple of hours today and seemed to enjoy it.  She is still intubated and will stay that way for the time being.  The doctors have scheduled three surgeries for Tuesday.  They hope to do it all at once to make it easier on Drew.  The trach will be done and the G-tube and the fundo (sewing the stomach up around the esophagus to stop any spit up from coming up and causing aspirations).  So we are hoping these will help her get stronger so she will be able to come home soon.  We are all looking forward to getting all the tubes out of her mouth, nose and face. 
September 29,2007:  Drew has been very stable the past few days.  She weighed in at 8lbs 7oz last night,  she is gaining slowly but surely now.  Because she is intubated still we think she doesnt have to work so hard to breathe so that is giving her a growth spurt.  It is not very comfortable for her but it is only for a few more days. They took her IV out and are just giving antibiotics through her feeding tube now.  Her lung x-ray is clear so maybe it was just aspirations and not pneumonia.  She is very alert and loves watching cartoons or the baby Einstein videos.  We just know she is going to be a genius.  
On a different note, we need to thank everyone for their prayers and also for all the buzz going on with the benefit.  We are truly blessed to have such a wonderful supportive group of friends and family.  We also have strangers sending us support and words of encouragement from all across the country and overseas.  It is so amazing how this beautiful baby girl has brought so many people together.  Your guestbook entries are also so uplifting.  In the breastmilk pumping room where April spends alot of time there is a computer and she loves checking Drew's site while in there.  We all send our love and thanks to you wonderful people. 
October 1,  2007:  Tomorrow is the big day.   The surgeon was just in and said it would be a go for the morning.  Mom is trying to get all the cuddle time in she can today as we have been told she will not be able to be held for a week after until the trach heals.  We got one of the preliminary muscle biopsy results back but unfortunately it came back as inconclusive, except to say that there is severe low muscle tone,  hopefully the next round of tests on her muscle will be more conclusive.    Will keep all of you posted as to when she is out of surgery tomorrow. 
Also we have decided to have a baptism done at the last minute.  We are sorry all the family and friends could not be here but there were a few that were able to make the ride all the way from home in time.  The god-father is Kevin and the god-mother is Auntie Tina.  We all felt this was a good time to do it.  We will have a celebration when Drew goes home. Will post pictures as soon as we get them.  The hospital even had a beautiful white gown for us to dress her in.
Thanks again for all your prayers and good wishes,  we so appreciate it and so does Drew. 
October 2,  2007:   Drew came out of surgery at 12:30 p.m.   Everything went as expected.  She is still medicated and out of it which is just as well for now. 
It is now Tuesday evening.  Sorry to be so abrupt earlier but we were a little taken aback when we first saw Drew.  We knew what to expect but the seeing was a different story,  just very sad seeing her at first.  She is still sleeping soundly and they will try to keep her like that for awhile to help manage the pain.  We know she needed these surgeries and in the long run it is for the best,  just hard to see her like this. 
October 3,  2007:  Drew had a good night.  They have started slowly with her feeds again to make sure everything is running correctly.  They are using her N-J tube(in her nose) still for the feeds for the time being.  They are going to start putting her meds through the new G tube (the port in her belly) later to see how that works out and if it goes well her breastmilk can be put through there and the N-J tube removed,  she will then be officially tube free from her face!!!!  We are so looking forward to her waking up and us not seeing all the tape and tubes.  For the time being she is still heavily medicated so she does not wake and have pain.  We do not want her to wake to that either but we so miss her eyes looking at us.
October 5,  2007:  Drew has been doing very good.  She is getting back on her old schedule and is very alert when awake again.  She is back to watching the TV which she just loves.  With all the tape and tubes gone you can really see her starting to smile,  not just in her eyes but also her mouth.  The new G-tube is tolerating feeds good and they will slowly increase the amounts and maybe tonight the n-j tube in her nose can go.  There is talk of going back to UMass Memorial in Worcester next week after the first trach change if all looks good.  We are so hoping for that, not that we are not treated well here but we miss home.  We can not say enough about the caring staff here and how they treat us like they would their own family. 
October 8,  2007:  Drew has been holding her own and very stable.  She now has no tubes in her mouth, nose, and no tape on her beautiful face.  Her face looks so full and happy now!  Tomorrow will be one week since the trach so that means it is time for her first trach change and to check out how well it has healed.  She has pretty much not been moved since the surgeries to let everything heal.  Tomorrow with the change being done means she can now be moved back into her crib and she can have a bath and get dressed up in her pink attire and most importantly finally be held and cuddled by her mom.  Something tells me it will be hard for myself (Mema) or anyone else to get their hands on that baby for awhile:)  There is a meeting later to determine when she can go back to Memorial Hospital.  It looks very good that it will be later this week.   After being here in Boston for one month April is anxious to get back near home and be with 2 year old Dominic andher husband Will.  Dominic has been  cared for by family and friends but mostly by his Meme so he really misses Mom also. 
October 9, 2007:  Today was a very busy and exciting day.  The trach change went well and has healed nicely.  They also took off the bandages from the fundo surgery and that looked good.  Drew was also off the ventilator for one hour this morning and she is now off again this evening for another hour.  They are going to go slowly and see how she does.  She got weighed after laying all week on her back and she tipped the scales at 9 pounds!  She also had PT and OT visit and make splints for her wrists and hands.  Music therapy also came today and Drew just loves listening to her sing and play music. Most importantly Mommy and myself (mema) got to hold her for very long periods of time today.  Mom was in heaven,  it was a long week without any cuddling. She also was able to give her a long overdue bath and put clothes on her for the first time in a week.  She dressed her in an outfit one of her nurses bought her when she went away to a garlic festival last weekend, it says stinky rose on it which is very fitting as she has had many stinky diapers today, haha Thanks so much Irena! 
On the downside, we found out that we probably wont be going back to Memorial Hospital in Worcester like we thought.  They think it would be better to stay here and then go to a rehab facility near here instead of back to Worcester and then back here again.  Plus Worcester does not have the breathing equipment needed for Drew to be on before going home.  It sounds like Drew could actually be home in her own bed in like a month so that is good news.  We were so looking forward to seeing all Drews nurses back in Worcester but if this gets her home faster this is better. 
October 12, 2007:  Drew has been doing so good.  She weighed in at 9lbs 4oz last night so her growth chart is steadily going up now.  They have increased her amounts of food and they have put her on a schedule where she is now fed every 3 hours for a half hour,  so no more hooked up to the machine for 24 hours a day continuous feeds which is wonderful.  They have also increased her "sprints" off the ventilator to two hours in the morning and two hours in the evening.  The goal is to hopefully be able to have her off the vent during the day,  just hooked up to the hose with moisture in it, or the collar as they call it, and then at night or when she is struggling hooked to the vent.  All these things are leading up to her going home,  they are thinking she will be able to be home in around 3 weeks.  There is major training going on with April learning how to do all her care and I think she is very able at this point.  She tries to do everything on her own now,  the nurses are getting very bored with nothing to do but play with Drew :)  At this rate of how good she is doing we think Drew will be home before the new room is done but that is fine with us.  Hopefully ground will be broken next week and then it will go up fast.       Still no results on the muscle biopsy..........
October 17, 2007:  We have had an amazing stretch of good days.  Drew is doing wonderful and seems so content and happy.  We are really seeing those smiles now.  She is growing steadily and has grown out of all her newborn outfits. Mom had to bring up a new wardrobe of the next size, the nurses love seeing her model all her beautiful clothes everyone has given her. She is such a fashionista!  We had a team meeting yesterday and they all agreed she will be ready to go home in 3 weeks. They have never allowed a baby her size or with her equipment to go home so soon but they had nothing but praise for how knowledgeable and dedicated April is and had no doubts about her ability to care for Drew.  So if they are able to line up home nursing care it will happen!  They decided to slow down her sprinting off the ventilator as she wasnt tolerating it well.  Still no results but we do see some progress. We have seen some movement of her neck and head,  nothing major but more than before. 
Saturday, October 20th:  Drew is still holding her own and doing well.  Mommy and I (mema Chris) have been very busy learning everything there is to know about taking care of her.  Her first trach change wil be done tomorrow and Daddy gets the honor of doing that.  They will not let Drew go home until all of us have done that and are comfortable with it. There has been many people in setting up all that needs to be in place before she leaves,  from medical equipment to the nurses. They have given us a date of November 6th to go home.  It is so nice to have a date.  The new room will not be finished by then so they will be moving into my house till completion,  the construction dust and paint would not be good for Drew.  I am sure the room will be done quick as so many people are waiting to get their hands into it.        Drew is still not going for long periods sprinting off the vent as she doesn't tolerate it for too long.  We are just going at her pace and there is no hurry.  It has been one month since the muscle biopsy was done and still no news, but they say no news is good news!
Monday,  October 22nd:  Daddy did a great job on doing the trach change.  He is going to be a tough act to follow when our turns come. :)  We have been busy learning all there is to know about caring for Drew with lots of help from our wonderful respiratory care cooridinator, Lauren.  She is leaving no stone unturned about what we need to know which is helping to make us feel confident that we can meet all of Drew's needs.  As for Drew, she is just such a joy!  We can not get enough of her.  She has been slow on the weight gain but hopefully now that she is so stable that will pick up.    Mommy took Drew for her first walk outside today!! It was very exciting packing her and her things into the carriage.  They walked down to the lobby and met Aunt Karen and "Aunt" Dolores who had come to visit.  Boy were they surprised to see April and Drew, and her entourage, walking towards them.  They all went out to the beautiful garden the hospital has and Drew seemed to love the wind on her face.   Mom hopes to do this often to get used to being home and doing those normal things!! 
Thursday,  October 25th:  All is still going well.  Mom took Drew for another walk Tuesday in that nice weather we were having and she again seemed to love it.  Yesterday was another learning day for us all,  Mom and I took the CPR class for babies with trachs and then Dad and Dominic came last night and he also got certified while mom was able to spend some precious time with Dominic who was just full of hugs and kisses for mommy!  We have a wonderful nurse, Mary, who is an expert in trachs and is making sure we are as well before we go home.  We just can not say enough about the staff here in Boston and how they are so determined and dedicated to making sure we are comfortable with caring for Drew. We hate to name names as there are just so many fans and supportive nurses of Drew and us here but will say her primary nurses, Emily, Tina, (they make me crazy teaching me my big word of the day-haha) Irena, Tori, Ilene, Kate, Trish, Monica and on and on....just so many and they now feel like family and friends to us.  We will be lost when we leave their wonderdeful warm blanket of support here. 
As for Drew, she just seems to be getting a little stronger each day!  Yesterday Mom and I were talking accross the crib and as we talked she turned her head a little back and forth to each one of us as we talked.  She also seems to be getting a little stronger in her legs and arms.  All baby steps but we love it!  Of course all the staff here in the NICU that know Drew keep sneaking in all day stealing smiles from Drew which she is usually most willing to give, she is such a flirt!   Mom has started the countdown,  12 more days till home!
Sunday,  October 28th:  We received the news we have been waiting for on Friday.  We needed to take a couple days to absorb and research before sharing with everyone but we are now ready.  Drew has a very rare, of course it is as with our diva Drew nothing is easy :), genetic disorder.  It is called Nemaline Myopathy (NM).  Because she was born with it she is at the severe end of the disease. I know you are all wanting to go look it up now as we were but just wanted to add a few things before you do.  As I said it is very rare and none of Drews nurses have even encountered it before so they are also looking up anything they can find.  One of her doctors happens to be one of the leading specialists in this field here at Childrens in Boston so that is good.  Knowing what she has does not change any of our plans for her future.  If anything we may lower the bar a little but everything else stays the same,  we plan on challenging her and pushing her to her limits and beyond.  She may never walk but if that is the case we are already envisioning her on a souped up pink motorized wheelchair smashing into things and laughing.  We have already e-mailed and talked to some parents with children with NM and they say the thing that makes their children go so far is having the support and love of a large family and friends.  With Aprils and Wills strong supportive family and all of our large "extended" family group she will go far, we are sure of that.  She is a beautiful strong baby and brings us such joy,  we cant imagine life without her.  There are many advances in this disease being made all the time,  it is a form of muscular dystropy with the difference being that with NM the muscles do not get worse, they can get better and stronger.  Gives us a whole new appreciation of Jerry Lewis and those boots at the intersections. 
 Monday, October 29: As for Drew,  she is doing great!  She just passed the 10 pound mark.  OT and PT have been right on top of her and their newest "trick" is a brace for her hips that she has to wear 23 hours a day.  That problem was from her being breech.  Hopefully she doesnt have to wear it more than one or two months as it is very awkward handling her with it on. We continue to see small improvements in her tone which is very encouraging.  I must add a few words about my daughter and her husband Will.  I am so proud of how strong and determined they are in facing these challenges that lie ahead.  Yesterday one of the nurses came up to April and said how sorry she was and April started to console the nurse and said do not be sorry, this is no big deal. There are much worse things that could be wrong with Drew.  April, you need to know that you are a wonderful person and the best Mom that Drew could have.  It is easy to see why this beautiful miracle of a baby has been given to you and Will.  You guys are all of our heros.  At the end of a long and stress filled day on Friday April texted us, again consoling us, saying "the good news is, Drew is here, she is beautiful and she can only get better and stronger" 
One last thing, when checking in on Drew please sign in the guestbook. I know it is hard to find words sometimes but just say hi and your name. You have no idea how uplifting it is to the family to see the entries. Every four hours when April is pumping her "liquid gold" for Drew there is a computer in the room she logs on to.  Thanks to everyone of you!
8 MORE DAYS!!!! 
Thursday, November 1st: We all had a fun day yesterday. Dominic came dressed as an Indian and we dressed Drew in her pretty pink princess costume and we went trick or treating around the hospital. We were also joined by one of Drew's new friends from the NICU, Ursilla, dressed as a teddy bear. The girls pretty much slept through most of it but Dom and us had a blast :)  Drew is doing great. She is now close to the 11 pound mark, she is gaining steadily. All of her recent tests have come back clear so everything is looking promising for her Tuesday release.  Grandpa, with Dominics "help", put together the crib in Drew's temporary bedroom at our house last night. The medical equipment people are coming tomorrow. It is very exciting setting it all up and having everything fall into place, even the home nursing staff positions are almost filled!  We all look forward to seeing all of you that can make it tomorrow night. We wish Drew could be there but it wont be long, we will have lots of pics! The building permit has been pulled so now it will take no time for Drew's new room to be completed thanks to all of you.  5 MORE DAYS! 
New update since this morning: We have now learned not to count our chickens before they hatch.  We just heard that they think they will need this week to train all the nurses lined up for Drews care.  Unfortunately that means she will probably not be going home next week.  We are disappointed but know that it will be soon, I guess we will hold off on the countdown till it really happens!  
Monday, November 5th: We are happy to say that Drew is still stable.  She still seems to be getting a little stronger all the time.  She is in a good routine and already sleeps through the night!  Mom or the nurse does wake her up once during the night for suctioning and position change but she goes right back to sleep.  Her morning is devoted to watching her cartoons which she loves. She will peek around the TV every now and then and give us a smile but then right back to her shows. Everyone is still buzzing about how she is going home soon. We have no specific date but they are working hard to make it happen any day now.  
With the amazing success of Drew's benefit last Friday she will have a beautiful room to go to when the construction is done.  Many of the builders came and are all anxious to begin work. She is one very lucky girl to have so many people in her corner watching her back!  We can not wait for her to come home and introduce this lovely little lady to all of you wonderful people who have taken such an interest in her life. I think we may need to hand out wrist bands for visiting times, haha   With the support of all of you we know she is going to do great!  
Thursday, Nov 8th:  Drew is doing wonderful. She is still slowly but surely gaining weight. She had her ultra sound on her hip Tuesday and that came back with only a small improvement so I guess that means she has that brace for at least another month. We are all anxiously waiting to begin the next step in her life, bringing her home. April is so prepared in her care and pretty much does everything herself now. The nurses really are bored and they even joked the other day about how hard it is for them to even get a look or play with Drew as April is such a baby hog, haha  We really are going to miss their support when we go home. I know Drew has touched many of their lives also and I am sure we can expect to have visits from them when we are home, we hope so as they feel like a part of our family now. We heard some of her former nurses in Worcester have put in applications to do home care for Drew, we know how special Drew is but it is so heartwarming to know the impact she has had on other people as well.  So we know she will be home next week, just do not have a specific day yet.   
Friday, Nov 9th:  It is official!  Drew will be leaving Boston on Monday morning!  She will be coming to her temporary home finally.  We are so excited.  I (Mema Chris) have her room all set up and ready.  April is beside herself with the anticipation of having her family all together finally.  Dominic is so ready also.  He has been so patient these past four months but it is really hitting him now.   Work has started on the new room.  My cousin Rollie started the excavation early this week and the ground is now ready for Drew's new friend Jeff to put the foundation forms up. Grandpa's work is ready to pour the cement.  Of course the builders, Petes, are just itching to get their hands in there and start building.  Drew really is blessed to have all these people volunteering their services and equipment for her, they havent even met her yet and she has already made an impact on them. There are no words to express our appreciation for what you are all doing for our beautiful baby.  Life is good!!!!    3 MORE DAYS!!! 
Monday, Nov 12th: We are sorry to say that Drew will not be coming home today. Drew is certainly teaching us the meaning of the word patience. We will do no more countdowns, will just tell you when she is home. We are keeping our fingers crossed that it will be this week..The sniffles she had turned into a partially collapsed lung with fever and lots of secretions. I guess par for the course with our little diva and she is teaching us what to expect during the upcoming germ filled winter months, all the more reason to get her out of the hospital and home. She did hit the 11 pound mark the other night so that is another new digit for her! She turns 4 months old tomorrow, we feel like she is growing up so fast! In the words of mom, dad and their families, we really are blessed to have Drew. We may not have chosen this journey but it is well worth the trip. We have met so many awesome people and have been shown such love and support from complete strangers who have shown their support in so many ways. Our faith is being renewed daily as we see the wonderful gift we have been given in this beautiful baby. Life really is good and we love this trip we are on and wherever the road may take us we are so ready to explore it.
Tuesday, Nov 13th: Drew had a rough night last night but she is back on track today.  She gave Mom a scare but it didnt take her long to get back to being stable.  We guess it is a good thing she was not home and we will have to wait till next week for her to come home now. I guess Drew is teaching us what to expect, it is good experience that is for sure.  Even after being sick the past few days she is still gaining weight as she was up to 11.4 tonight!
We also need to let everyone know that the film crew filmed Drew yesterday for a segment on the news to be aired on Friday on WBZ  It will air sometime between 5 and 6 during the news cast.  They were doing a segment on music therapy at the hospital and the therapist recommended Drew for the shoot.  So set your DVR'S!!! A star is born!!
Friday, Nov 16th:  Drew is sitting up watching one of her favorite morning cartoon shows.  She is doing very good and has been stable since Monday.  We are keeping our fingers crossed that she stays that way through the weekend. She is filling in so much that new braces have to be made for her hands by PT before she goes home as the others are getting tight.  She is on the weight percentile chart now!  She is only in the 5% range but she is on the chart!  Dont forget to watch the news tonight to see our superstar!
Monday, Nov 19th: I just received news that Drew has left the hospital!  It was supposed to happen at 11 this morning but because of some glitches with insurance and specific ambulances she just left at 1 p.m.   She is all bundled up and Mom is riding with her to their temporary home here in Grafton.  The equipment people have been here for a couple of hours and all is ready for Drew.  We almost called a limo to take her home when the ambulance mix up arose but we didnt want her to get used to that mode of transportation :-)  The banners and balloons are set up out front to announce her arrival, we are not too excited are we!!!!
Tuesday, Nov 20th:  Wow, what an amazing, crazy, wonderful day yesterday was!  Drew arrived to a houseful of equipment delivery and set up people.  Then there was the nursing coordinator and a couple of nurses and then the stream of visitors.  I must say Drew loved seeing all the people,  the more people she has to look at the happier she is. It seemed to encourage her to move her head alot just looking at all the different faces and noises and she seemed to be trying to reach out with her hands and arms.  April was a happy Mommy last night,  it was the end of four long months and her dreams were finally coming true,  she had Drew tucked in to her own crib,  spent time with Daddy and then cuddled in the bed next to the crib with Dominic all night.  I must say she is "glowing."  And Drew is doing great.  We think she loves being home, although we all miss all the wonderful people back in Boston.  They did a fantastic job teaching us how to care for Drew and gave us the confidence we need. 
Thursday, Nov 22: Happy Thanksgiving to everyone!  We have so much to be thankful for. Drew seems to be thriving at her temporary home.  Her friends and family will gather here today and give many thanks for the gift we have all been given.  Yesterday Mom took Drew on her first outing,  she met with her new pediatrician. She passed with flying colors and her weight was up to 11.14oz.  It was also the first day she was able to go without oxygen support for a couple of weeks.  Her big sister McKenzie is also down visiting from Maine so she got to cuddle with her last night for a long time. She loved helping to "do her up" for the night.  Work is coming along quickly on her new room.  The walls are up and framed and the roof should be done next week. The wonderful builders are putting so much time and love into making her room a "retreat" as they say.  Their vision is a big bright comfortable "living" room with barely a hint of it being a sick baby room.  We truly are blessed to have so many people watching out for and supporting our Drew. 
Wednesday, Nov 28th: Sorry it has been almost a week since I posted an update but things have been very busy around here, we are blissfully happy to be busy though! Drew has been doing great in the ten days she has been home. She had a couple of "off" days this week but is now back to normal and her numbers are great. We have started weaning her off the oxygen during the days again. They have started to begin to fill some of the nursing hours we are allowed and hopefully that schedule will be in place and working next week. Of course then April has to train them all to her ways of taking care of Miss Drew;-)  Mom really does know best when it comes to that!  Drew has had a steady stream of visitors and she really loves to socialize. She is such a people person, although the DVD player comes real close to tying for her attention, she just loves watching that. We are going on a "field trip" early Friday morning back to Childrens in Boston for a couple of doctor appointments Drew has.  We are looking forward to seeing everyone there again and the best part is we are just visiting!  Dominic is so glad to have both Mom and Dad together with him again. He has been super needy and wont let them out of his sight for a moment but that is getting better now and totally understandable and acceptable. 
Monday, Dec 3: Things are still going really good at home with Drew.  She has settled in great and it has now been two weeks today since she came home. We went to Boston Childrens on Friday for a check up and she passed with flying colors. We also got to meet with many of her old nurses and doctors and they loved catching up with her. She loved seeing everyone and stayed awake looking around the whole time. Since we are getting better at packing her and all her equipment up we also took her to meet Santa on Sunday.  Again she stayed awake the whole time and seemed to love socializing. Dominic on the other hand did not take a liking to our special Santa friend.  He did enjoy the cookies though! Santa was able to pull some strings and get us in to see him before all the other children did to avoid any colds or viruses that might be floating around with them.  Drew is very lucky to have the connections she has to so many special people!  Afterwards Drew's BFFS Payton and Alexis came over and hung out on the couch with her and we took some more x-mas pictures. It was a busy weekend as we also decorated the house and Drew loves looking at the lights. The nursing times are starting to fill in better now and we have someone during 5 days of the week now for various times to help out.  Mom has claimed the night shifts all to herself as she sleeps (or somewhat sleeps) next to the crib. She says the loss of sleep is well worth it as it means having her baby home. 
Thursday, Dec 6: Drew continues to thrive here at her temporary home with Mema and Grandpa and her whole family. Dominic is getting very used to having his "baby" around and is getting better about sharing her with Mom.  Drew had a doctor appt. yesterday for her monthly RSV shot with her pediatrician in Auburn.  Just to prove how well she is doing out of the hospital environment she gained over a pound and a half in two weeks.  She weighed in at 13 lbs 7 oz.!!!  Of course if she keeps up with that every two weeks we will then be putting her on a diet ;-)  She has also been doing real well without hardly any oxygen support in the last few days.  We couldnt be any happier with her progress.  Of course the lack of sleep at night is hard on Mom and now she is hoping to get a nurse in for a couple of overnight shifts so she can get a couple of solid nights rest a week. 
Tuesday, Dec 11:  We took Drew to Childrens Hospital yesterday for her ortho follow up.  The doctor said we could do away with the brace as her hips seem better and with her low muscle tone her legs are usually in the right position anyway. She will go back in one month for an ultrasound just to make sure all is right.  While going through the lobby we ran into her former nurse Tina and then one of Drews doctors. They both said how good she looked. We then went over  the other end of the lobby and saw some Red Sox players showing off their shiny World Series trophy to patients. It was a shame that Dad had to work as he would have appreciated that so much more than Drew did! I would like to say we had an uneventful ride home but that was not the case. I think Drew just wants to keep us on our toes because we were on the turnpike and almost home when the alarms started ringing. By the time I could pull over and park she was in a full blown episode and April had the equipment out and set up.  It didnt take us long to get her back and stable. We thank God for the thorough teachings of Lauren and Mary and the other nurses at Childrens as they had us prepared for this. Once we stopped our initial panic it only took us seconds to do what we had learned to do.  It seemed like forever at the time though. Very scary and I informed Miss Drew that we need no more learning experiences like this again. We passed the test so do not do this again! We think it had something to do with her positioning in the car seat so we plan on going shopping for one with more support and the ability to recline more.  Other than that, things are great and she really is doing wonderful.  
Tuesday, Dec 18th: We are happy to say that this past week has been uneventful!  Drew has been doing great. We went to Boston yesterday and the docs are amazed at how good she is doing. They had to change her trach as we had tried at home but we just couldnt get it to fit and had to put a smaller one in. The doc had to really prod and push and manipulate but was able to get it in, the alternative was the OR and putting her under so we didnt want to do that. Not sure why that happened but Drew was fine afterwards. The car ride went smoothly after some adjustments we made to her seat which is good as we go back again Thursday for another appointment.   Drew really is a social butterfly, she went to a Christmas party Sunday at her great-grandpas house and did good. There are hardly any days that go by that she does not have at least one visitor, which she loves. She has another Christmas party Monday at her Meme's house and also one with Mom and Dads friends on Saturday. Mom and Dad had his work party on Saturday and they stayed over so I got to babysit all night! Drew behaved like the perfect baby that she is!    She has been on such a good curve lately that we plan on sprinting her off the vent for short periods of time next week.
Thursday, Dec 27th: We hope everyone had a great Christmas like we all did.  Of course the greatest gift any of us here could have received is propped up in her crib watching one of her Baby Einstein videos.  Drew is doing great and even with all the traffic here over the holidays and all her outings to other parties she still is going strong.  We keep our fingers crossed and count our blessings daily and give thanks that she has not caught any colds or bugs going around.  She still seems to be getting a little stronger and we are still waiting for PT and OT to start so they can work their magic with strengthening her muscles.  We still have a shortage of nurses but hopefully that will change in the new year.  The new room is slowly taking shape but has ground to a halt right at the moment while waiting for the handicapped shower to arrive.  While the walls are all open now is the time to install that. We also have a whirlpool tub to install which she will just love, she loves her bath and can move her limbs so much in her little tub of water. That is getting too small and we are told water therapy is great for kids with low tone. We want to extend our wishes for a wonderful new year to all of you and thank you all for your good wishes and prayers that you send to Drew.  It is all working as she is doing great! 
Saturday, Jan 5th:  We are now going on 7 weeks since Drew came home from the hospital. It is amazing to us how well she has done since coming home. Yesterday she weighed in at 15lbs 5oz.  That is over 2 pounds gained so we must be doing something right!  They also did an x-ray and found some pnuemonia in each lung. That is not so good but we figured something was brewing as she has been running a fever. We are able to deal with it at home so far and hopefully she will recover quickly. We have our own mini NICU set up here in her room so we can do just about anything they can do if admitted and all her different doctors stay in close contact with us at all times.  Monday morning she goes to Boston for a few different check ups and we will see how it has progressed then.    She seems to be getting a little stronger all the time.  This morning she was in her boppy with her legs hanging off and Mom had bells around her ankles and she was ringing them like crazy while shaking her legs. We just love seeing any improvement in movement and she seems to love doing it also.    We did a few changes to the web site as it appears a number of people are having a hard time getting on so I hope that allows you all access again.  I have heard that is why so many have not been signing the guestbook.    HAPPY NEW YEAR TO ALL! 
Monday, Jan 7th:  As it turns out Drew took a turn for the worse late Saturday so we took her to the local hospital.  Her doctor from Boston called and set up for an ambulance to take her back to Childrens as all her specialists are there.  They started her on a stronger antibiotic by IV and she seems to be getting better. Her fever broke last night and they are starting her feeds back up today.  Unfortunately her x-rays are not much better so they are going to keep her there till they see an improvement.  We see an improvement as she was giving some small smiles last night.  She is such a stong little fighter, even while they try to find veins, which is very hard to do with her, she does not get that upset.  It seems to bother us more.  So we are hoping for her to come home by the end of the week. 
Wednesday, Jan 9th:  Drew is home again!  That did not take long to get back to her normal self.  She is still on the antibiotics for a week but you would never know she had been sick.  She also had her hip ultrasound before we left and that turned out to be good so we do not have to be careful with the positioning of her hips anymore.  Mom gave her a nice long tubby tonight which Drew just loves.  It feels so good to see her all snuggled up in her own bed, hugging her teddy bear.  She looks so cute in the new pj's her adopted "Auntie" Laura gave her.   Everything is right again!
Wednesday, Jan 16th:  It has been one week since Drew has come home from her short stay in the hospital and she is doing wonderful.  Mom has slowly started turning all the numbers on the machines back to where they were before she got sick and she is almost back to her normal settings.  We have not seen her numbers on the monitor and vent as good as they have been this past week for a very long time, she is near perfect, but we knew that anyways!  So we are hoping she stays this way for the rest of the winter. Things are looking up in the nursing department also. Mom contacted another nursing agency and they should be able to provide around 60 hours a week of care, so that will be much appreciated. Mom should finally have a couple of nights off a week now as she has never had night time nursing.  Now lets see if she will actually "sleep" in another room without staying awake all night wondering if Drew is OK, haha
Friday, Jan 25th:  We hate to jinx it but it has been smooth sailing with the diva. She is doing so awesome. She is on room air again and her settings are back to her pre-sickness settings on the vent and her numbers are doing great. She is still growing like a weed.  At her six month check up the other day she was 16.3, that put her in the 50th percentile so she is right where she should be!  She started with the feeding team yesterday also and they showed us how to massage her face to try to teach her how to eventually swallow and eat and get those facial and throat muscles working. So all we see is progress with Drew, she is taking her time but every little thing is a milestone for us.
Wednesday, Feb 5th: Things are really going great, as I knock on wood.  Everyone has that cold or stomach bug around here and we are hoping Drew does not pick that up.  We are all being careful but with a sick 2 year old running in and out of her room it is hard.    Drew has been taking baths at night in the big bathtub and she loves the freedom it gives her to move her arms and legs.  It looks like she is making a snow angel in the water.  We can see why water therapy is so beneficial to her.  She has been doing great with learning how to suck while being fed, even though she gets fed through her G-tube if she learns to suck when her stomach is empty eventually hopefully she will start to swallow when being fed and then be able to eat someday.  She really is such a good baby, so many of the nurses comment on how good she is.  She is on a great schedule and always sleeps all night and most mornings we have to wake her around 9. She takes a couple of good naps during the day also, unless there is alot going on or if she has visitors, quite often :) , as she so hates to miss anything and wakes right up to check out who is there.  She is such a flirt with people.  She recognizes our voices and faces and lights right up when she sees us.  Her new room is coming along nicely and hopefully in a month or so she will be moving into her new digs! 
Saturday, Feb 16th:  It was actually nice enough yesterday for Mom to pack Drew up in her carriage and take her for a walk with Dominic to get some fresh air.  Mom thought she needed a change of pace from her bedroom and the sunshine was a refreshing change.  Drew loved the walk and after awhile fell asleep. She has been doing excellent and is still growing like a bad weed!  She did pull one of her episodes the other day on the nurse but was fine afterwards,  I think she just likes keeping us on our toes!  She never did catch that bug or cold that everyone in the house had the past few weeks so we are very lucky that she dodged that.  She loves playing copy cat games with us now,  we will make clucking noises or raspberries with our tongues and then she also tries to do it with her tongue.  She looks so cute and proud of herself when she copies us.  She is now 7 months old and we still must say she is the best baby any of us has ever seen.  She rarely cries and when she does she is consoled right away. She is just so easy going.  She is also moving more and more.  PT and OT have been working with her and teaching us the exercises and it seems to be helping.  The nursing care has been improving and we have coverage just about everyday now.  The new room is also coming along nicely.  The plastering was started today so that means it is almost paint time!  

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