i don't think i'll ever take "normal" for granted again...at least i will try not to. lucy is doing great today. so far she's eaten 1 choc chip pancake and half a bagel with cream cheese. last night she ate some soup and a bagel and kept it down. now she's lying back down and resting again. she gets worn out really easily...as expected! we got the go ahead to leave so now we just have to wait for our ride. joe has a long day today and then he is coming right here to get us. so we will hang around for one more day and be in our own beds tonight. yes!
i feel much more confident bringing lucy home today. i'm almost glad she wasn't as good yesterday because if that had happened to me at home with her i would've had to bring her back in. now at least i have one bad day under our belts and i feel more comfortable with her at home.
daisy has a sleepover at the zoo tomorrow night with her brownie troop. originally i was going to go with her, then when lucy's surgery was planned i told her i couldn't go. now i'm not quite sure what to do. i think the right thing to do is stay home with lucy. i would hate to be away if something happened. but on the other hand, daisy will be the only girl on the trip without her mom. i know she'll do fine and have a great time but i worry that because there isn't one specific person looking out for her that something will happen. i will pray for God to calm my heart about this one. she is excited to go and i know i can trust that she will stay safe and not wander off. i need to be with lucy. i hate these choices!!!!
my parents are headed to PA tomorrow and i am really excited to see them. i know lucy is too. it will be hard on sunday when they leave with daisy and tucker...i will miss them so much since i've already been away from them this week but i know lucy will be too worn out with them around. hoepfully we'll get to head up to east hampton a week from today. it will be so nice to sit and relax on the beach for a few weeks before returning for lucy's dr visit follow up.
thanks everyone for your continued support. and for those of you that have sent lucy little treats here and there...thank you thank you thank you. you really have made our days more tolerable and put a smile on lucy's face!
Thursday, June 24, 2010
Wednesday, June 23, 2010
yucky day
we've had kind of a rough day today with lucy. she just hasn't wanted to do anything and has stayed in bed all day. finally she perked up a bit at about 4 so we followed her lead and took her for a walk. well the five minutes that we were out was five minutes too long. she started crying and saying how much her head hurt. so we quickly carried her back and laid her in bed. now she is sleeping and hopefully she will sleep for a couple of hours until her next dose of medicine is due.
i do feel as though we have so much to be grateful for. this morning as she was sleeping the alarms went off down the hall and suddenly all of the drs went running. the room two doors down from us has a little child that is clearly suffering. i don't know if it's a boy or a girl but they are not doing well. the mom and dad were outside my closed door crying and moaning. i just sat here and cried too wondering if they were thinking this was it for their kid. it was terrible to hear and i can't imagine how it felt. i've walked by their room a few times since this morning and there is always someone in there working on the child. please take a minute out of your day to pray for this family. pray for them to feel God's peace and grace and love on them. pray that the drs show grace in dealing with the child and the family.
joe is visiting today so i got to shower and run downstairs to the food court. wowee was that nice! i picked up some extra interactive toys for lucy at the gift shop since we'll be here another whole day. thanks everyone for checking in and praying for lucy and the rest of our family. we feel your prayers!!! God is definitely with us and we are blessed more everyday!!
until tomorrow....
i do feel as though we have so much to be grateful for. this morning as she was sleeping the alarms went off down the hall and suddenly all of the drs went running. the room two doors down from us has a little child that is clearly suffering. i don't know if it's a boy or a girl but they are not doing well. the mom and dad were outside my closed door crying and moaning. i just sat here and cried too wondering if they were thinking this was it for their kid. it was terrible to hear and i can't imagine how it felt. i've walked by their room a few times since this morning and there is always someone in there working on the child. please take a minute out of your day to pray for this family. pray for them to feel God's peace and grace and love on them. pray that the drs show grace in dealing with the child and the family.
joe is visiting today so i got to shower and run downstairs to the food court. wowee was that nice! i picked up some extra interactive toys for lucy at the gift shop since we'll be here another whole day. thanks everyone for checking in and praying for lucy and the rest of our family. we feel your prayers!!! God is definitely with us and we are blessed more everyday!!
until tomorrow....
mcdreamy
someone woke me early this morning from the neurosurgery team. i could barely see without my glasses on and the fact that i had just fallen back asleep after joining lucy for a 3 am snack and drink. i just pretended that he was dr. mcdreamy and suddenly it didn't matter what he was saying...he couldn't say anything wrong. i did however realize he was telling me that lucy was doing really well and was asking if i wanted to go home today. yes i do want to go home!!!! as scared as i am about bringing her home and there being a problem, i know she will recover faster at home. we have our own foods, toys, and beds there. not to mention there is no constant beeping all night long in our room and other rooms.
that brings me to another point. now, i am not complaining about my nurses. they have been nothing short of amazing! however, can't a hospital make it a policy that after 11pm people walking the halls have to be quiet? i mean seriously!!! what's with waking up at 1am to a bunch of nurses and staff hanging out at the desk (right outside my room) laughing and joking around. i know they have a twelve hour shift but you know what? i have an indefinite shift and if i don't sleep a little bit, my next shift won't go so well for anyone. okay...done complaining....
that brings me to another point. now, i am not complaining about my nurses. they have been nothing short of amazing! however, can't a hospital make it a policy that after 11pm people walking the halls have to be quiet? i mean seriously!!! what's with waking up at 1am to a bunch of nurses and staff hanging out at the desk (right outside my room) laughing and joking around. i know they have a twelve hour shift but you know what? i have an indefinite shift and if i don't sleep a little bit, my next shift won't go so well for anyone. okay...done complaining....
i am super excited to get lucy home today. she has just amazed me through this whole thing. she was cheery on the way to get her scar (obviously she knew what this entailed but not to the degree that i did), she has done anything and everything that anyone has told her to, and she has defied the odds for recovery. nobody expected to see her up the first day going on the potty, and then walking around the second day for as along as she was. she even painted a picture with another little girl in the playroom. so cute!! she misses everyone and is ready to go but hasn't complained nearly as much as i would've let her! i just love her...she's awesome.
hopefully my next post will be from home!!!!
Tuesday, June 22, 2010
oh sleep, why dost thou leave me?
last night could've been a lot worse but it seemed painful being awakened every hour. our nursing team here is awesome and they do their best not to wake us up but they have to make lucy open her eyes and then they check her pupils by shining a huge flashlight in them. poor lucy...she was weepy last night. she wanted her dad and she wanted to go home. i don't blame her...i feel the same way.
she woke up this morning at 7...awesome job lucy! she is stiff but moving well and in good spirits so far. her liquid IV was disconnected this morning to see if she could get enough fluids on her own. if she can do it then the IV can come out today sometime. i also let her wear panties instead of diapers so she is slowly getting more comfortable. i also brought a toy that my dear friend betsy sent lucy (thanks bets!) last week. i pulled it out of a bag this morning and boy did she smile!! she is playing as best she can without moving like she wants to.
i'm so proud of lucy for being such a trooper. she really is amazing to me. even the nurses can't believe how good she is about taking medicine and doing what they tell her to. it would be easy to protest every part of this but she is handling it really well!
i got to have a moment last night where i was just so appreciative to God for our new perspective on life. it's so precious and we take it for granted too often. i'm grateful for my lucy...for all of my kids. they are such blessings and i hate that i am not appreciating them for who they are all the time. why does it take a surgery for me to realize what amazing little people they are???? hopefully today will include taking out lucy's IV and unhooking her from every monitor known to man. she will be much more comfortable and i know that means we are one step closer to going home. she will do better at home and i think i will too!
thanks for the continues prayers!!! they really are making everything go perfectly.
she woke up this morning at 7...awesome job lucy! she is stiff but moving well and in good spirits so far. her liquid IV was disconnected this morning to see if she could get enough fluids on her own. if she can do it then the IV can come out today sometime. i also let her wear panties instead of diapers so she is slowly getting more comfortable. i also brought a toy that my dear friend betsy sent lucy (thanks bets!) last week. i pulled it out of a bag this morning and boy did she smile!! she is playing as best she can without moving like she wants to.
i'm so proud of lucy for being such a trooper. she really is amazing to me. even the nurses can't believe how good she is about taking medicine and doing what they tell her to. it would be easy to protest every part of this but she is handling it really well!
i got to have a moment last night where i was just so appreciative to God for our new perspective on life. it's so precious and we take it for granted too often. i'm grateful for my lucy...for all of my kids. they are such blessings and i hate that i am not appreciating them for who they are all the time. why does it take a surgery for me to realize what amazing little people they are???? hopefully today will include taking out lucy's IV and unhooking her from every monitor known to man. she will be much more comfortable and i know that means we are one step closer to going home. she will do better at home and i think i will too!
thanks for the continues prayers!!! they really are making everything go perfectly.
Monday, June 21, 2010
lucy's surgery
lucy got through surgery just fine today. so many of our prayers were answered and to think i was feeling greedy asking for things like a good night's sleep. it's amazing the way God answers even our littlest of prayers!!!
for lucy's surgery there is a minor version where they don't cut through the dura (you can google all of this under chiari malformation and decompression), and the more invasive surgery which is where they cut completely through the dura. the surgeon used his judgement once he got "in there" and felt very confident that he could get what he needed to get without cutting all the way through the dura. so...it was a middle of the road surgery. this is just perfect for us. we were worried about the more minor surgery because of the surgeon not being able to fully get what he needed to, and we were concerned with the major surgery because of the miserable recovery period. we didn't even know that this middle surgery was an option. this truly is the power of God at work on all accounts.
lucy is lying here now in front of me in miserable pain. the nurses have been telling me that tomorrow is worse. i'm saving my tears for while she is asleep because when she is awake i have to work on calming her down. hopefully this pain won't last too terribly long for her sake.
gotta go eat some lunch now...i'll write more tomorrow. thanks so much everyone for all of your prayers. lucy is literally covered in prayer-she is wearing her prayer shawl that a very special lady from my parents' church knitted for her. love it! ...more updates to come...
for lucy's surgery there is a minor version where they don't cut through the dura (you can google all of this under chiari malformation and decompression), and the more invasive surgery which is where they cut completely through the dura. the surgeon used his judgement once he got "in there" and felt very confident that he could get what he needed to get without cutting all the way through the dura. so...it was a middle of the road surgery. this is just perfect for us. we were worried about the more minor surgery because of the surgeon not being able to fully get what he needed to, and we were concerned with the major surgery because of the miserable recovery period. we didn't even know that this middle surgery was an option. this truly is the power of God at work on all accounts.
lucy is lying here now in front of me in miserable pain. the nurses have been telling me that tomorrow is worse. i'm saving my tears for while she is asleep because when she is awake i have to work on calming her down. hopefully this pain won't last too terribly long for her sake.
gotta go eat some lunch now...i'll write more tomorrow. thanks so much everyone for all of your prayers. lucy is literally covered in prayer-she is wearing her prayer shawl that a very special lady from my parents' church knitted for her. love it! ...more updates to come...
Sunday, June 13, 2010
updates
tomorrow is lucy's preop appointment and i'm just a little nervous to drive into the city by myself. i have no choice though so i'll just get it done and over with. hopefully we won't be in there too terribly long. then the countdown begins for the surgery.
yesterday i got the opportunity with the women's ministry in my church to go white water rafting. i bought four tickets right away and invited some neighbors with me. let me just say that we will be laughing about the things that happened for a long time to come. it was great team building, and we created moments that we will never forget. definitely good bonding! after the trip, we went to dinner just the three of us and laughed so hard about the day, we had tears streaming down our faces. i LOVE that!!!
nothing else too new around here. just trying to get daisy's end of the year stuff done and keep the house clean. that's enough!! also, trying to get the cat to be an outside cat. she is nice and easy but tuck and i are allergic so she needs to go out!
i'll write more tomorrow about how lucy's appointment goes!
yesterday i got the opportunity with the women's ministry in my church to go white water rafting. i bought four tickets right away and invited some neighbors with me. let me just say that we will be laughing about the things that happened for a long time to come. it was great team building, and we created moments that we will never forget. definitely good bonding! after the trip, we went to dinner just the three of us and laughed so hard about the day, we had tears streaming down our faces. i LOVE that!!!
nothing else too new around here. just trying to get daisy's end of the year stuff done and keep the house clean. that's enough!! also, trying to get the cat to be an outside cat. she is nice and easy but tuck and i are allergic so she needs to go out!
i'll write more tomorrow about how lucy's appointment goes!
Friday, June 4, 2010
peace
as the days pass by and i speak more of lucy's surgery to people, i feel more and more confident that we are going in the right direction. what an answer to prayer that i can have peace in a time when i could be nervous and frustrated and sad.
i haven't spoken to much of the surgery to lucy as i don't really know what to say to her. we told her that she would have a scar like mommy and daddy and tucker. i told her that she would get to watch a lot of movies but other than that i don't want to upset her. i tell her what i feel like she can handle but i don't want her to stress about it either.
otherwise, things are great here. tucker and lucy are going to their last day of science camp today. it is bittersweet for sure. i am happy that they will be home for the summer with no schedules but i am sad because it will be our last day at this school. it has been our school for four years now and we can't say enough about it. the teachers are amazing!!! we will be sad to leave but excited about venturing into the world of private christian schooling. i never saw myself here at this time last year...who knows where we will be next year at this time! it's amazing to see the way God works in our lives.
on a side note, i am close to having lost 50 lbs. i think i am at about 47 or 48 and i will know for sure monday night when i get weighed in...ugh. i am amazed at this journey as well. for years i've been trying to lose this weight. now all of a sudden it just started happening. i am so thankful and i am feeling more like myself. in another 20 lbs i will be at my wedding weight but if i stopped losing right now that would be okay. i have an amazing husband and family that love me no matter what! and...i happen to like myself too...
i haven't spoken to much of the surgery to lucy as i don't really know what to say to her. we told her that she would have a scar like mommy and daddy and tucker. i told her that she would get to watch a lot of movies but other than that i don't want to upset her. i tell her what i feel like she can handle but i don't want her to stress about it either.
otherwise, things are great here. tucker and lucy are going to their last day of science camp today. it is bittersweet for sure. i am happy that they will be home for the summer with no schedules but i am sad because it will be our last day at this school. it has been our school for four years now and we can't say enough about it. the teachers are amazing!!! we will be sad to leave but excited about venturing into the world of private christian schooling. i never saw myself here at this time last year...who knows where we will be next year at this time! it's amazing to see the way God works in our lives.
on a side note, i am close to having lost 50 lbs. i think i am at about 47 or 48 and i will know for sure monday night when i get weighed in...ugh. i am amazed at this journey as well. for years i've been trying to lose this weight. now all of a sudden it just started happening. i am so thankful and i am feeling more like myself. in another 20 lbs i will be at my wedding weight but if i stopped losing right now that would be okay. i have an amazing husband and family that love me no matter what! and...i happen to like myself too...
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