July 21st: April and Will had a large birthday celebration for Drew yesterday.  The rain held off all day, it would have been nice if the humidity did also as it was very sticky and hot all day but it was a great party anyway.  From the first thing in the morning Drew knew something was up as she was very antsy and would not nap.  She totally skipped her afternoon nap also which is unheard of for her but she was so excited to see all the people.  She is such a social butterfly.  Mom dressed her in her pretty pink (of course!) fluffy party dress with a pink crown that said birthday princess. She was so excited that most of the day her little feet were kicking and she was moving her head side to side while clicking her tongue.  She received so many gifts that it took over and hour to open them. She will need no clothes for a long time! She also received many sensory toys which are great for her therapy. Auntie Karen brought a pinata and she loved watching the big kids demolish that and scramble for the candy in front of her! Auntie Andrea brought her a new pet, a parakeet!  It is very gentle and her eyes just lit up when she placed it on her hand and let it walk around on her. Auntie TT brought a large pink box on wheels full of anything you can imagine having to do with princesses.  She is such a lucky girl to have such a large fan club!  On another note,  she had her one year check up last week and she is doing really good.  She is still around 19 pounds but she is long and she is in the 90th% for her height and 25th% for her weight. They changed her baby formula to a different kind for kids over 1 but other than that April was just told to keep up the good work. The finishing touches on the house are coming along also.  Last week myself and April and Auntie Karen, Auntie Glenna, Uncle Alex and Uncle Tyler spent a day digging out some beautiful flowers from Drew's great grandmothers extensive gardens. We then made some flower beds along the front of the house and especially in front of Drew's farmers porch where she sits in her carriage often. We placed her bird feeders in the middle of it all and I am sure the beautiful flowers will help attract many birds for her enjoyment. Thank you to everyone for all you do for Drew and your kind wishes and support. Liz will be adding pictures in soon of the party so keep an eye out.   
July 1st:   Miss Drew will be one year old in less than two weeks!  Ten months ago we would have never thought she would have made it according to some predictions, but just look at her now! She is such a joy and gift to all of us who have had the pleasure of her company. She has taught us all so much and her loving parents have adapted wonderfully and she is able to be included in all their activities like a normal one year old child would be because of their attention to her needs.  The nurses and PCA's have also been such a big part of her life and such a help.  Drew has weekly Pt and OT sessions and now her beloved music therapy has started.  They are now going to bring in a therapy dog also as Drew just loves animals. Mom took her to the zoo recently and in the petting area put deer food in Drew's lap and she was so excited as the deer ate it.  Anything to get her to move her hands is good therapy.  Bath time has been really special as April has been going into the tub with Drew and sitting her up.  With the water having no resistance Drew is now able to reach out for toys with her floating arms, that is such a milestone for her. So things are slowly but surely happening.  It is all in very small baby steps but an improvement is an improvement!  The family is coming camping with us again for the upcoming holiday weekend and I so look forward to being with them for the weekend.  I (Mema) miss them so much!
June 9th: Talk about HOT! We wanted summer to arrive and it has with a heat wave!  Will had to go out and get a large air-conditioner for Drew's room yesterday as the heat was not agreeing with her, as we knew would happen.  With the vent blowing warm air into her 24/7 she is already hot and a "sweaty Betty".  The first AC he bought was for a 20x20 room and he forgot to take into account the high ceiling and large sun filled windows so it didnt make a dent.  This new big one should work great when he gets it wired in tonight after work.  Drew and Mom and Dom have been hanging out at Drew's BFF Payton as she has a nice cool pool to chill out in.  The nurses are also loving hanging out there, haha    Drew's big news is that she has her first tooth!  The top one has been right there for quite awhile now and finally popped out.  I am sure more will follow now,  with her not chewing on food or anything they take longer to come out.  Stay cool everyone! 
May 27th: This month has flown by!  It has been blissfully uneventful with Drew.  We like it like that with her being so healthy and predictable.  She had a wonderful Memorial Day weekend camping with all the family. Drew and family stayed in Mema's and Grandpa's trailer and everyone and all the equipment fit perfect.  Mom and Dad are trying to give her as much of a "normal" life as possible and include her in everything they can and this weekend proved that is possible.  There is alot of things to remember to pack and take but it is possible and very doable.  We also learned that there is probably no way she has allergies as there was so much pollen floating around and it didnt affect her.  She spent all the days outside and loved looking around at the trees and the campfires at night.  She loved watching Dominic, Kade, Keegan and sissy McKenzie playing and running around.  When it was naptime or time for bed she was so tired it was funny. She would try to fight it as she hates to miss anything but it took no time to settle her in, haha  The fresh air was good for her. She even wore her new bikini to the pool one day.  We will have to get Liz to post some of her new pics.  I must admit it was great having them all stay with me as I have missed them since they moved back home.  She seems to be stretching her legs and arms out more and more.  She still is not moving against gravity but we are sure that will come as she grows.   
May 8th: Miss Drew is doing wonderful!  With spring hitting us now with the great weather everything is in bloom and we are watching her for allergies as those seem to go with NM.  She doesnt seem too affected by it yet, just a little in the morning.  April brings her outside as much as possible as she seems to just love being out.  She even had PT outside the other day.  Dominic loves showing her everything outside as she is "his sister" as he loves to tell anyone who goes near her.  It has been almost a month now since they moved home and they are settled in nicely.  There is still some finishing work needing to be done and the landscaping but with the nice weather everyone is very busy so hopefully it will get done soon.  Thank goodness the men were all slow during the winter and had time to volunteer and get most of it done as Drew loves her new spacious room and the whole family loves to be able to hang out in there with her.  The nurses even comment on how they have never worked in such a perfect room. 
April 27th: The weather has been so nice which is good for Drew as she can get outside which she loves to do.  She is so interested in everything going on around her.  She is smart as a whip and never misses a thing. It really feels like winter is finally gone which makes us all very happy.  We are really blessed as Drew was very lucky with missing all the bad illnesses that go with winter and compromised lungs.  Now that Drew has moved into a new district for early intervention she is receiving more services as they have more people for PT and OT and all the other services so that means more time is offered to her for therapy.  We are still waiting on the special carriage and crib but that should be coming soon.  Everything is special orders so it can take a few months to get.    As I knock on wood I just want to say Drew has been very healthy for quite a while now.  Thanks for all the calls and worries about the entry in the guestbook about a "rough" time Drew had but it was only that she needed suctioning.  That is a very normal part of her care and it is needed often, sometimes it is scary to people who are not used to it.  Drew has been great as usual!
April 17th: What a busy week this has been with the move and getting settled in plus everything else that goes on.  We spent all day in Boston on Monday with all Drews specialists checking her out.  They all thought she looked great and that she has some small improvements. That is the way of this disorder, tiny baby steps, but to us they are major.  Now that she is not living here anymore I notice the improvements more, even though I must admit I have been over visiting everyday since they left! April has been so busy getting everything in order and in its place.  Of course Dominic just loves being with all his toys and especially his train set.  Will is so happy to have all his family back in the house together and to be king of the castle once again, haha   Drew has been very healthy even though her cousins have another strain of that stomach bug,  what a long winter this has been for bugs and the flu, thank goodness spring has sprung and the weather is so nice.  There is a shortage of nurses since coming home so April is feeling the pinch.  She has not had one overnight nurse since moving, hopefully tonight one will show so she can sleep in her own bed upstairs in her bedroom for the first time in over 9 months. (of course she has the baby monitor on so she will wake if Drew wakes with any problems, even though there is a nurse with her!) 
April 12th:Drew is doing great and has settled in to her new digs perfectly.  Everything she loves is within her line of view.  When she is in her crib she can see the big TV above the mantle so she does not have to look at the little DVD player anymore.  There is also plenty of room for her to sit in front of it in the swing or her chair.  We know it is not good for children to watch TV too much but with Drew it is all she has and we try to keep it at learning shows like the Einstein videos as much as possible.  That is probaby why most of these NM kids are so intelligent.  If you stand between her and the TV she will actually start crying, she is so funny about her shows.  She also loves looking outside through all the windows,  the room is always so bright and cheery. The builders, the Dipadua's, were right on with their vision and design for her room.  It is perfect!  We will be setting up a new bird feeder outside her window that some special friends dropped off for Drew. (she is so lucky to have all these guardian angels thinking of her!) She will love watching the comings and goings of the birds. Drew has a big day Monday as she is going to Childrens in Boston to meet with a few of her specialists.  It is has been a while since they have seen her so I am sure they will be impressed. We hope all her nurses in the NICU are on that day as Drew will be "in the house" and I am sure they will love seeing her progress in the last 5 months. 
April 9th: Today was a wonderful day as DREW MOVED HOME!!  There is still a few little finishing things to be wrapped up but they can be done while she is there.  The whole family is so excited.  Dominic is strutting around telling everyone that this is "my house".  April has been busy sorting through all the supplies and things gathered during the last 5 months and finding a place for it all.  It all fits there perfect!  Drew seemed to love being there. The room is so big and open and there is so much for her to see with the high ceilings and all the windows looking to the outside.  She kept singing real loud,  we think it is because she loves listening to the echo sound it makes in there.  I must say my house is very quiet right now,  it seems very odd to not hear the humming of the machines and the cartoons blaring and Dominic running around,  I miss them already but THERE'S NO PLACE LIKE HOME!  Thanks to all of you for your help in bringing Drew home and for your kind words and prayers.
March 31st: All is going really good with Drew.  We thought she was coming down with something during last week as she ran a temp for a couple of days but that is gone now and the past couple of days she has actually had less secretions than she has ever had.  We are not sure what is up with that but we only had to suction her trach a couple of times yesterday and she has gone all night for two nights now with no suctioning needed.  Hopefully that means she is starting to be able to handle her secretions by clearing and swallowing some.  She has a doctor appointment next week in Boston so hopefully we will get some good news on that.  At her pediatrician checkup last week she had lost a  little weight while she was in the hospital but not a big deal as she has plenty to work with.  Everything else checked out great also.  I cant believe it is April tomorrow! Winter is leaving us soon which is a good thing,  we cant wait for the cold and flu season to be gone.  Still waiting for the move into the new room to happen.  We keep saying next week....All that is left is finishing work and hopefully everyone will be available this week to do that.
March 24th: We hope everyone had a wonderful Easter.  Drew had a great day.  She awoke early and big brother and big sissy helped her open her easter baskets.  Because she is not able to eat the candy yet they were also happy to take care of that for her ;-)  She received some new Baby Einstien videos which she loves watching,  she actually loves watching anything on TV! She also received some new fluffy teddies which is another favorite thing of hers,  she loves carressing soft toys. There was a houseful of people here all day and she loves watching everything going on.   April took Drew, Dominic and Sassy for a nice walk in the sun today.  We hope these nice days continue so Drew can get out more.  April has been giving Drew some good tasting stuff on her pacifier.  She just dips it a little into something good and it looks like Drew is starting to swallow when she chomps on it.  She is going to request that a swallow test be done sometime soon to see if those muscles are getting stronger like they appear to be.  
March 19th: Drew came home today.  She is such a fighter that she was able to fight it off real quick. The fever broke the first day.  She has not been able to shake the "squirts" yet so they waited to start her feeds until last night and she tolerated them well. Of course April never left her side so she was ready to come home.  She met with her docs while there and they took out her g-tube and inserted her new mic-key port which is  much smaller and easier to care for.  Kind of looks like a turkey pop up timer. Her feeding team also met with her and decided to lower her calorie intake (told you they would put her on a diet, haha) as she is just gaining weight so well now.  So Drew is looking great now and is happy to be home again. Her moving date has been moved further up to maybe another week now as some of the work was not able to get finished in time. 
March 15th: I spoke too soon last time as Drew caught that ugly stomach bug a few days ago and has not been able to shake it off so she went off to the hospital this morning.  She was dehydrated to she needed some IV fluids and strong anti-biotics.  April kept her close by at UMASS in Worcester instead of Boston as this was not affecting her breathing at all. 
March 5, 2008: The other update page is filled so we needed to start a new page.  Drew went to the doctors last week for her checkup and weighed in at over 19 lbs!  Since coming home from the hospital four months ago she has gained 8 lbs.  We are just amazed at how big she has gotten.  Next they will be putting her on a diet, haha    She also saw the ortho docs and they were not totally thrilled with her ultra sound of her hips.  They have now devised a new torture for her in the form of a new brace.  I think it bothers us more than her ;-)  The good thing is she only has to wear it 12 hours a day versus the old one she had to wear for 23 hours a day.  She has been doing excellent and has managed to dodge all these flu viruses and other bugs floating around here.