Thursday, December 31, 2009
Tuesday, November 24, 2009
I also wanted to ask for your help. The Ronald McDonald House was our 'home away from home' while we lived at the hospital for 43 days. Before our stay, I had always heard of the 'Ronald McDonald House Charities', but never knew what it was, or what they did. To me, Ronald McDonald was the yellow, white and red clown guy that made burgers! Well what the RMH really does is offer a home, a place of comfort, a place where everyone understands what you are going through and lifts you up any way possible. It's not just a room to sleep in, a shower, food... it's so much more. The people who volunteer at the house are amazing - everywhere you turn, someone is smiling, understanding your pain, offering you what they can to make you feel better. I will always be greatful for RMH and what they offered us when we were in such pain.
The RMH is always in need of donations - the smallest things you wouldn't even think of are always appreciated. Unopened toys, travel size shampoo, conditioner, body wash, toothpaste, toiletries, laundry detergent, Bounce sheets, leftover party supplies, plastic cutlery, socks, snacks, canned foods, frozen foods, paper plates, paper towels, and so much more...
If you have any 'extras' you would like to donate, I would be happy to collect them from you and bring it over to the house, or you can bring them directly there. Monetary donations are welcome as well. Here is their website: www.RMHCSD.org
Have a wonderful Thanksgiving... we will definitely be enjoying ours with our little Emma home to eat turkey with us!
Sophie and Tyler
Tupperware - Emma Crew Fundraiser!
Nov. 16th - Dec 5th. 40% of your purchase goes to The Emma Crew Fund.
(Copy and paste link to your browser to view I am having trouble getting the link to work) - Kristina
Tuesday, November 10, 2009
ENCINITAS ROUNDTABLE PIZZA PARTY FUNDRAISER
When: Tuesday, November 17th - 5:30-9pm
Where: Roundtable Encinitas - 1321 Encinitas Blvd, Encinitas - (760) 753-8303
15% of the evening's proceeds will go to the Emma Crew fund, so bring your appetite & enjoy some yummy RT pizza while helping the Crew Family! They'll be a silent auction with tons of great items from Etnies, Reef, Soupplantation, Infantino, Smith Sunglasses, Surfshot.com, and much more. Silent Auction will start at 6pm & will close at 8pm. Please print out this page & give to the cashier when ordering (so they can track the Emma Fund donations).
PUMPITUP FUNdraiser When: Wednesday, Dec. 9th - 4pm - 7:30pm Where: PUMPITUP Murrietta - 41785 Elm St Suite 203, Murrieta, CA 92562-9275 - (951) 600-9663 There will be two sessions for you to choose from, 4-6pm or 5:30-7:30. For $10.00 a child they get unlimited play in both arenas, pizza and drinks. Call and Reserve your space! Limited spaces, 1st come, 1st served. Prepaid reservations required! 951-600-9663THANKS TO EVERYONE FOR YOUR CONTINUED SUPPORT OF THE CREW FAMILY!!!
Monday, November 9, 2009
Home Sweet Home...
It has been a little over a week that our sweet Emma has come home. Discharge papers signed, Tyler and I couldn't get out of the hospital fast enough - the moment we pushed through those hospital doors and out to the parking lot, I felt a ray of sunshine pour over me and gave me a sense of warm, giddy happiness... We were finally bringing our baby home!
The drive from the hospital reminded me of the day we brought her home when she was born, just over a year ago..."Honey, easy on the brakes... Honey, watch that turn... Honey, is she comfortable? Honey I should sit in the back seat with her".
Her first moments at home were spent quietly assessing her surroundings... we greeted 'Pumba', Miller Dog, Socksie Kitty, her abundance of Elmo toys in the family room, the rocking chair where I would rock her at night, the grass in the back yard where she would play. She didn't say much, but it was all coming back to her little by little. Gramps was there to greet her too, and Uncle Gav couldn't miss his niece's homecoming either. She took it all in quietly and calmly.
Her first night was a bit difficult - sleeping on and off in 2-3 hour increments. Ty and I took turns comforting her through the night. Although she had a rough night, I think she was comforted by being in her own bed again, with all of her familiar smells, sounds, and familiarity. Emmy still needs her melatonin every night as she still wakes, and her naps are pretty irregular. I am hoping that this disturbance in melatonin production will eventually regulate itself.
The past week has been tremendous in Emma's rehabilitation. Being home has been doing wonders for her. She remembers her home, her toys, her sister... she wants more than anything to be able to play like she used to, and she tries, but gets frustrated because she realizes she can't get there by herself anymore. She can't pull herself up, roll over, sit up, crawl, or do anyting on her own. However, if we prop her in a standing position and hold her hands, she will take steps, so that is huge! She can stay in a standing position as long as we hold her hand! We have to be by her side at all times though, holding her, assisting, watching her and guiding her right arm movement. She is easily frustrated with her inability to be indipendant, but I remind myself of how lucky we are that she even has the desire and drive to play and move around... we are so blessed to have her.
There are two picture frames on our entry way console table. Both have been empty since my good friend Leanne, brought the pictures they housed to me in the hospital, to put up in Emma's room. I put the pictures back in their frames today... 'EmmaBabyLegs.jpg' and 'CrewFamily.jpg' are back where they should be. CrewFamily.jpg is back where it should be... home.
Sophie and Tyler
Friday, November 6, 2009
Prayers & good thoughts still going strong for you baby girl...XoXo!!
Thursday, October 29, 2009
As I pulled the wagon by the PICU doors, I recalled the many times I ran out of those doors in tears, scared, angry, sad. The many times Tyler and I walked in through those doors after her many procedures, anxious, nervous, sick to our stomachs.
I made my way through the hallway a few steps and memories of that first day - those first moments came flashing back... I looked to the window and remembered my social worker allowing me to 'stand right there' so I could catch a brief glimpse of my baby girl as she was being urgently wheeled through the hallway, surrounded by the trauma team... I had no idea what was happening - why was my baby not breathing on her own? Why was she unconscious? What were we doing here? What happened?
We passed by the radiology room (aka CT scan room) and I recalled all of Emma's numerous 'emergency' scans - Ty and I would always follow Emma's gurney to the doors and wait right outside, praying for good results, crying, fearful for the news to come...
Emma and I made our way back to our current room in Rehab, and walked by the NICU waiting room, where I would escape to at night for a few minutes of solitude. I remember hugging that young new mother who was crying for her 4 day old baby. That hug actually made me turn a new leaf in my faith. I felt like maybe I should give Him a shot. I did. It worked. He listened. He still listens.
Ending our wagon ride, we walked through the door to our room and I recalled the wonderful, amazing doctors, nurses, social workers, and therapists that we met along the way. I thought of all of you, many who we don't even know in person, who have reached out to us to offer your prayers and positive thoughts, inspiring stories, and words of courage and sympathy. There are good people out there.
I looked around the room and breathed a sigh of relief as I looked at my baby girl ... this is our last night here. Now that's sweet.
Sophie and Tyler
Wednesday, October 28, 2009
Some of Sophie Crew's colleagues have organized a blood drive tomorrow at Grossmont High School : ) So if you're in the East County area, please stop by & donate blood under Emma Crew's account. Your donation will be used if Emma should need any blood in the future for transfusions or surgeries. If you can't make it tomorrow, keep in mind that you can donate anytime at any blood bank site...the account stays open. Just be sure to mention Emma Crew's name.
Grossmont High School
Blessings & THANK YOU!! : )
Sunday, October 25, 2009
All mail can be sent to:
Rady Children's Hospital San Diego
Attn: Sophie Crew (mother of patient Emma Crew)
3020 Children's WaySan Diego, CA 92123
Day 38: We've made it to rehab, but just like the last time we got here, we met a roadblock on this road that never ends...
The neurosurgeon finally removed her head wrap to reveal that she does indeed have another lump on the side of her head that most likely indicates an accumulation of CSF again. He wants another CT scan and wants to proceed with yet another surgery to add that shunt we have been trying to avoid this whole time. I am so done. I am so tired. This is not fair - Emma did not ask to be here - she didn't do anything wrong, she did not ask to have 4 surgeries, 10 CT scans, intubation 4 separate times, coma for 19 days, countless drugs, loss of so many things she used to have. This is not fair.
I don't want to do another CT scan... apparently just ONE CT scan packs 500x the amount of radiation as ONE X-ray. I know they are quick and only require her to get a dose of morphine and adavan to 'chill her out', she has already had 10 to date and I fear for what this will do to her long term - her brain is already damaged enough. Fear of future brain cancer scares me. I am leaning towards doing an MRI instead, which uses a magnet and no radiation. the downside here is having to be intubated and put under general anesthesia. The MRI process is almost one hour.
After either of these exams, the doc will then tell us how to proceed. He has been leaning towards getting a shunt for quite a while though. Although he is an amazing doc, I want a 2nd opinion. I don't want to cut into her head again - that poor flap has been opened up 4 times now - she needs a break.
In the meantime, we finally got a room in ortho/rehab Friday night. I am scared to decorate her room - will we end up back in PICU or IMU for this shunt surgery? Therapies won't start until Monday so I have been trying to work with Emma on my own. She gets frustrated with things she used to be able to do. I know she remembers. We can't work on crawling until she can use that right arm more sturdily. That right arm does not exist to her anymore... she uses her left hand and arm for everything. If you place your finger in her right hand though, she will grasp it - it is weak but much stronger than before. Her smiles are more abundant - I love to see that big cheeky grin. The 'stick your tongue out to me' game is definitely her favorite. She is eating more and more - we have started giving her soft 'people' food - scrambled eggs, soft sandwich pieces, banana... she loves it. We have to teach her how to eat properly though - the OT came to do an evaluation yesterday during lunch and explained to me that kiddos with brain injuries become much more impulsive, so in Emma's case, she sees food and crams it all into her mouth instead of chewing one piece and taking it one at a time. She is storing food in the roof of her mouth (weak tongue control) and grabbing for more.
We are still giving melatonin, as kids with TBI (traumatic brain injury) lose their ability to regulate their internal clocks. She slept fairly well last night - she woke up several times but went back to sleep within a few minutes - the best sleep yet!
My mom had to go back to France so Tyler has been at home with Ava for the past few nights. It gets lonely here without him. There is only so much of the hospital room, playroom and ortho playground I can take. I know Emma is tired of this place too... I really think that she will do better when we get her back home to see her room, her toys, her dog, her cat, her big sister...
Sorry, I am kind of a downer with this last update... I just want this nightmare to be over and to bring my baby home.
Sophie and Tyler
Friday, October 23, 2009
Day 36: She spotted a plane!!!! That alone made my day. The fact that she spotted it all on her own and pointed to it - wow... to be honest we didn't think this moment would ever come again, but it did - she spotted the plane!
You might be wondering what we were doing outside...well last night at 11pm, the IMU suddenly needed the room for another kiddo that was being helicoptered in, so we got moved to the Oncology wing.. go figure. We are only here until a bed opens up in.... rehab!! Wohoo! Emma is doing great with her recovery from her latest surgery this past Monday. She is almost completely off of all of her withdrawl drugs and now we are just managing pain from her latest surgery with Tylenol - ahhh it sounds so nice to not use a term like 'fentanyl' or 'versed' anymore!
I know I havn't updated in a while, so thank you Wendy for keeping Emma's readers in the loop. Following Emma's third surgery (to drain the CSF accumulated in her craniotomy site and to add a titanium mesh where her skull is missing), she was not recovering well - fevers, vomiting, pain, fussiness... the left side of her face was so swollen. The doctors feared she might have meningitis (infection of the brain or spinal cord) so they quickly did a CT scan (I think this is #10) and a spinal tap. They decided to go back in for a 4th surgery because there was a fear of Emma losing her scalp to infection or inadequate blood/oxygen flow. Surgery took 2 hours longer than they had told us, but the neurosurgeon took his time cleaning out the site - no sign of infection, so that was great. Her recovery is going quite well - no swelling, scalp looks like it will live (it's still pretty purple and gray though) and Emma is tolerating the pain much better.
I am keeping my fingers crossed that for the time being, we can move on and begin working on tying to salvage what we can of Emma's resulting disabilities.
Happy 4th Birthday, our sweet Ava. We love you.
Sophie and Tyler
Wednesday, October 21, 2009
In the meantime...so many people have asked how they can help. All of us are really on the same page in wishing we could just do SOMETHING to help out Emma and the Crew family. I received a monthly email from the American Red Cross today & thought of baby Emma because I know she's had to have a few blood transfusions. If you remember, in one of Sophie's last blog updates, she asked us all to please pray for ALL the kiddos @ Rady's Children's Hospital, since there are just so many kids who are fighting for their life. Blood transfusions have been for Emma and I'm sure for many of those other children...a lifesaver...and that blood is not always abundant. So if you happen to have time on your lunchbreak or on your way home....make an appt. to give blood...or if you see a bloodbank bus (like I saw in the Trader Joe's parking lot last week), pop in & let them prick you! Use the time to pray for the Crew family & just give in honor of baby Emma. I know the Crew family & all the other families at Rady's Children's Hospital would be thankful.
Blessings to you & your family : )
Monday, October 19, 2009
We got word this morning that baby Emma will need a 4th surgery this evening : ( I usually wait for Sophie to give me a full update before I post, but I really wanted to get the request out for prayers...so I'm just posting a quick update. Baby Emma & the entire Crew family is so tired right now, so please join me in falling to your knees in prayer as much as possible today to ask God to strengthen all of them. Call your church Pastor, email your prayer chain groups, go to your church & kneel on the pew, just KEEP praying & uplifting the Crew family to the Lord. if you're not religous...make a "vision board" of a healthy happy smiling Emma to send healing vibes her way : ) Please just do ANYTHING YOU CAN to put positive prayers & thoughts out there for the Crew family. Thank you & blessings to everyone.
Sunday, October 18, 2009
Instead of a precious picture of baby Emma, today I chose a picture of this outrageous roller coaster because I think it accurately portrays what the Crew family has been through over the last week. The climb upwards towards the graduation from the PICU into rehabilitation was joyful and filled with excitement as the Crews anticipated brighter days and the high of what all the new therapies in rehab would bring....to the emptiness they must have felt in their stomach when that high turned quickly to a low when they learned baby Emma would have to have surgery again...then the reality that surgery, nor recovery from surgery was easy. All of us can't imagine what this roller coaster of emotion feels like, so we can't tell Sophie & Tyler, we know how they feel. But we CAN continue to fall to our knees in prayer & uplift the Crew family, higher than we have ever uplifted them before. Please continue to spread prayer requests to your friends, family, neighbors, colleagues...anyone & everyone...specifically prayers for a "quick and painless recovery from this latest surgery, and for great progress in rehabilitation". HE is listening : )
Thanks to Sophie, for sending us this update last night:
Day 30. Wow, a lot has changed since I last updated. On Thursday morning, the docs rounded outside of our PICU room and decided we were ready for rehab! Wohoo! We were so excited to finally be moving out of the ICU and onto trying to salvage what we can of Emma's losses. The entire right side of her body has been affected (she has lost her speech, right side peripheral vision, movement of right side... these are only the things that we can see now... other things such as learning disabilities and speech/cognition won't show until years from now). It was a great day. Emma was finally coming off of those heavy drugs and was becoming more alert, calm and finally awakening from the sedation effects of her drugs. We wheeled her down to Ortho/Rehab and got settled into her new room. We were excited for the new schedule of therapies... PT, ST and OT. Well, rewind a minute to Thursday morning... Emma was feeling good, but we started to notice the CSF leaking from her stitches again... Em had what looked like two water balloons attached to her head - there was that much fluid built up at the craniotomy site! By Thursday night - our first night in rehab, the neurosurgeon decided to schedule surgery for the following day. The concern was that there was now a risk of infection...
Emma had her third surgery Friday morning. They reopened the entire craniotomy site to drain the fluid that was built up, and to drill in a temporary titanium mesh to cover the brain and section of the skull that was removed. This will be removed in a few months to be replaced by her real skull or prosthetic (as the doc explained 'kind of like Plaster of Paris that turns into a Coral-like material). Tyler and I found ourselves in that same waiting room - the last time we were in there was on that first night when Emmy had to have her first two surgeries to stop any more brain damage due to the swelling of her brain.
Well, recovery has not been that fun. Em has had a fever, has been uncomfortable (we have had to administer a few doses of morpheine), and has vomited a couple of times. Her left eye is completely swollen shut and is bruising. She has slept in 10 minute increments. She is so tired.
One of the other neurosurgeons came to see Emma today and explain that although he hopes this surgery works, there is still a possibility that she will need a shunt if the CSF can't reabsorb by itself. I am really hoping we don't have to go down that path...
We were hoping to start therapies today but that will have to be put on hold until *hopefully* Monday. We hear such great things about this wing of the hospital. The therapists are supposed to be awesome. The Doc is top notch as well. We are looking forward to getting her started.
On Thursday - our first day in rehab - we were finally allowed to take Emma outside to the Rehab playground. Emma breathed fresh air for the first time in one month... ahh it was so nice! She loved being outside! It almost felt like we had our girl back. Some of you may be familiar with Emma's fascination with planes, helicopters, birds, and well... anything that flies in the air. Before her trauma, she would point, scream in excitement and jump up and down at the sight of anything flying overhead. Tyler and I braced ourselves as we were out in the rehab playground - a few helicopters flew over us. We pointed them out to Em... I guess we need to be patient and hopeful that one day she will love them as much as she used to. Thursday was not that day, but that day will come. It just has to.
Tyler and I love that we can hold her again. Although we have to be careful with how we handle her head now, we can't get enough of holding our sweet girl in our arms. Her smell, her warmth and her little body cozied up to ours is addicting.
My mom brought some pajamas from the house yesterday. Em finally wore her first pair of cozy jammies in one month. Kind of nice to wear something other than just a diaper and a gown! We have to rework Emma's closet now - she can only wear things that button and zip in the front... at least for the next few months.
Thank you all for your continued prayers for our little girl. Please pray for a quick and painless recovery from this latest surgery, and for the great progress in rehabilitation. We just want to bring our baby home. Also, please keep the other children that are here in the hospital in your prayers as well. Tyler and I have unfortunately met a few parents during our stay who's babies and kiddos need all of the prayers they can get. Please pray for miracles to happen for all of these kiddos.
Sophie and Tyler
Wednesday, October 14, 2009
Emma suffered a massive head trauma while at daycare on Friday September 18th, 2009. She remains in the PICU unit of Rady’s Children’s Hospital with extensive injury to her brain.
Donations/gifts will be directed toward the mounting medical expenses that are being incurred as Emma receives treatment and her parents miss work to be by her side. Payments can be made via paypal button on the upper right hand side of this page or via check. Checks can be made payable to SDCCU marked “Emma Crew Fund – Account #000368773100” & mailed to San Diego County Credit Union @ 6545 Sequence Dr. San Diego, CA 92121.
Expressions of love, concern, and prayer can be e-mailed to firstname.lastname@example.org.
Blessings & thank you for helping this family in need!
Tuesday, October 13, 2009
Baby Emma Update - 10.12.09
Below is an update from Emma's Mom, Sophie that we received last night. How wonderful it is to see the words "Smiling" and "Emma" together : ) As Sophie points out, the road ahead is sure to be a long one, but we will all rejoice in the blessings of each day & never give up hope - "Emma is a fighter and she won't settle for anything less than great."
Day 24. Still in the PICU but hopefully moving to rehab soon! She still has a couple of IV drugs and levels to monitor here in the ICU.
Emma continues to amaze us all... Every day she shows us that she is not cool with this 'dead brain cell' stuff... she won't settle for that - she wants to show us all that she is a fighter!
Today was a good day. Emma smiled many times throughout the day as we stuck our tongues out to her and smelled her 'stinky feet'. Our super cool nurse got a Radio Flyer Wagon for us to wheel Em around the ICU... it took three of us - Ty to pull the wagon, Super Cool Nurse to push the IV Pole thingie, and me to hold the wires and tubes up, but she loved it. It put her right to sleep! It was much needed sleep as the past few days have had some rough 'no sleep' patches... she is slowly coming off of some pretty heavy drugs, so she is on Methadone and Adavan to help her withdraw. This is probably the hardest thing to watch but as it makes her anxious, shaky and fussy. Speaking of drugs, goodness, have you ever see what phenobarbital looks like (anti seizure med)... it's nuclear green... definitely not my favorite to watch her get.
Emma got the 'ok' from the docs to begin pureed foods - she had some yummy applesauce this morning along with a bottle, while carefully propped up in a highchair! Tyler is wondering when she can resume eating steak and potatoes!
We are working with her right limbs as they are very weak. The left side of the brain (which appears to be mostly dead on the CT scan) controls the right side of the body, so everything has been affected, but we are so hopeful and staying positive that we will be able to retrain her brain to take on some of these tasks on the right side instead. As for her vision, we don't think that she can see, or at least receive the message that she can see, anything on her right side. If I waive my hand to her right, she doesn't follow. We already know that the retinal hemorrhaging alone has damaged her actual vision, but the brain damage has affected the 'messages' coming from the eye to the brain on the right side. We are starting from scratch... Emma is very weak and will need to relearn how to sit up, roll over, etc... and to think she had just started walking... that will come back - I am sure of it! She WILL walk again!
Her cry is slowly coming back - it is still very weak and she still sounds like a newborn. She has lost her vocabulary. She used to be such the talker... The left side of the brain controls speech and the way you understand speech.
Ava got to see her little sister via Skype yesterday... she was SO excited! She has been saying prayers at school for her little sis. Her teacher is awesome and has been sending me little video messages of her during prayer time. Ava really misses us. She just wants 'normal' back. Her 4th birthday is in less than two weeks... her birthday party will have to be put on hold for a couple of months... ughhh I hate that this affects her... it's not fair to her.
We love our little Emmy so much... she truly is a miracle! Thank you God... The road ahead is a long one, we know. We will never give up hope - she is a fighter and she won't settle for anything less than great.
Thank you for every prayer, thought, encouraging story, email, phone call... we are so amazed by all of they love Emma has been getting - from many of you beautiful people who we don't even know in person. We are so thankful for all of our friends, neighbors, family and good people out there who are including us in their prayers. Thank you.
Sophie and Tyler
Friday, October 9, 2009
Thanks to baby Emma's Mom, Sophie for today's update. Let's all continue to rally friends, family, neighbors, colleagues & prayer circles to pray for baby Emma's miraculous healing & uplift the Crew family.
Day 21. It's 1:45... I believe at this exact time three weeks ago, Tyler and I found ourselves in the Healing Garden here at Children's Hospital, our heads spinning, confused and devastated, with the news that our baby would need to get her skull removed ASAP to relieve pressure to her damaged brain... I still have moments where I wonder if this is all a dream...
Well, yesterday was a big day... our little Emma was taken off of her ventilator! They replaced it with a cannula to assist with her breathing. We got to meet our baby again for the first time. We walked in after the extubation to find a beautiful little baby sucking fiercely on her paci. Her eyes wandering about. Tyler and I was amazed. The nurses had told us that she would most likely not be able to have the suck reflex for a good few weeks. Well our little Emma pulled a trick out of her sleeve from the get go - she proved them wrong! Hoping that this is just the first of many good surprises she has for us. Tyler and I were smiling from ear to ear - we have not had a happy hug in such a long time - it felt so good to hold my husband and feel pure joy radiate from both of us. THANK YOU GOD! He is listening...
They removed the drain and pressure guage from her skull that they had placed in just a few days ago - we never had to drain her CSF so it was taken out. I am keeping my fingers crossed that her left side doesn't fill up again so much that it starts leaking out of her stitches again.
Emma is a like a newborn... we are just getting to know her for the first time again. We are in awe of such the sweet angel that God has saved, and anxious to get to know her, her likes, dislikes... Just like the first time Emma was born, I sit by her bed for hours and admire her, breathe in her scent. In many ways, she is a newborn all over again. She lays quietly and cannot make noise yet, just faint whimpers. Her eyes wander around as she takes in the new sights. Her paci sucking is fierce but weak. She doesn't know her name, or at least can't turn or focus when we call her. She sleeps for very short periods and then is awake again. We have a long road ahead of us, but Ty and I are sure to appreciate every step of it. Many babies don't survive what Emma went through... Emma is a fighter, and she is going to prove to everyone that she can far exceed everyone's expectations. She is strong. She is innocent. She is good.
Right now I am sitting beside Emmy who is whimpering - Ty and I are convinced she is hungry! They won't feed her anything by mouth until the docs can do the 'suck and swallow' test with her, which might not be until Monday at this rate... the paci isn't cutting it. I just want to hold her. Ty and I were both able to do so for a few minutes yesterday - I didn't want to give her up - I missed holding her so much. I will see if our nurse today will let me hold her again...
We had a Healing Touch nurse come to see Emma today - she is great - she said she felt a lot of pressure in Emma's head and that she has a headache. She did her energy 'sweep' and Tyler and I looked at each other in amazement as Emma closed her eyes and drifted off to sleep...
Thank you so much for your continued prayers. We have been overwhelmed with the amount of love, prayers and positive thoughts we have been getting from everyone. Thank you all for keeping our sweet Emma in your prayers.
Sophie and Tyler.
Thursday, October 8, 2009
Tuesday, October 6, 2009
Baby Emma Update 10.6.09
Extra prayers & notes of encouragement are needed for the Crew Family as they go into what will surely be a tough week ahead. Thanks to Emma's Mom, Sophie for keeping us all updated on her lil angel's recovery. Below is an update from her that she sent over this afternoon:
Day 18. Still here in the PICU. Yesterday was a tough day as we were reminded by the (sweetest and kindest) resident doc who has been with us since day one, that Emma's brain damage is 'extensive'. We're not accepting that. The only thing getting us through every single long hour and day of this nightmare is hope. Yes, sometimes my hope seems to get thrown on the floor but I pick it right up again. We are trying so hard. The docs had to reinsert a new drain and ICP monitor. her 'bolt' has been removed from her skull and a new hole was drilled into the right side of her skull to remove CSF from the ventricles of the brain. Currently the drain is turned off but they would open it if her ICP levels get too high. Ty and I were not happy with this decision but we need to trust that the docs know what they are doing. We just don't want her body to become dependent on dumping CSF rather than reabsorbing it. If this becomes the case, she would need a permanent 'shunt' installed to drain the CSF into her belly - for the rest of her life, every time she falls or gets a fever: Xray. I guess that is just the least of her worries at this point though... 'Emmy' has been moving her left side a lot - we already know that her right side has been affected as it is significantly weaker (left side of brain controls right side of body from neck down). Emmy opened her right eye today for a few minutes - just barely cracked open but enough to put a huge smile on our faces. She did this yesterday for a few minutes and I swear she moved her eye to look at Elmo that I held up for her. Today she didn't move her eye to try to follow us though... praying her vision is not totally gone (Em has Retinal Hemorrhaging). The docs want her to begin 'waking' so they are decreasing her meds little by little and if all goes well, she will be off of the ventilator in a couple of days - if all goes well. It's really 'Two steps forward, one step back' for us. As she wakes, fear and nervousness are setting in.... we pray to God that she has not lost what it is that makes Emma our 'Emmy', our sweet, sneaky, snuggly, funny, intelligent, witty little girl. We miss her eyes - her big sparkly eyes. Those things light up a room... so much that each time I look into her eyes, I want to grab my camera and capture such sparkle. We miss her little dance - all you have to do is start singing Lalalalala... and she starts dancing to Elmo's Song. She loves music - she points to the stereo and gets excited. We miss her new walk... she would take a few steps, look down and smile, and take a few more steps, look down, and keep going... We miss her cuddles - she knew how to cuddle like nobody else. We miss that she greets Pumba (Ty's Wild Boar Head that hangs in our garage) each time we enter the garage door by pointing and saying 'M-ba'. We miss her so much... Please God don't take this away from us. Please continue to pray for our sweet little girl. The next few days are supposed to be 'very uncomfortable' for her as she wakes. Please pray that she awakens completely, painlessly, and with minimal permanent brain damage.
-Sophie & Tyler
Monday, October 5, 2009
"Today is day 16 and Emma is still in the PICU. A few days ago, they removed the drain from her head that collects all of the additional blood and fluids that should naturally be redistributed into her system and expelled (pee and sweat), but for Emma, it seems her brain is not getting the message, and she is accumulating fluid where she got her craniotomy (where her skull is missing). Luckily it does not seem to be pushing into her brain so her ICP levels have not been affected by it. She had yet another CT scan (this has to be #7 or #8 now...) this morning which confirmed it is just fluid and not new blood. There is talk of a possible infection, and talk of needing another surgery to add the drain again, or another procedure where a tube would be inserted from her brain to her tummy - this would be permanent - I hope this does not happen. So in the meantime, the 'tree hugging granola cruncher' side of me is trying Arnica Oil on that side of the skull in hopes that it will reduce inflammation and get some fluids moving around. I am also waiting for the pharmacist to approve adding some Omega-3 oil - can't hurt, right?Emma has been moving her limbs a lot more lately. Her right side is a lot weaker but hey, she's moving, and that makes me happy. It gives us hope that she will be able to walk someday. She twitches her eyelids - this is how we know she is awake. I really think she is trying hard to open them but doesn't have the strength yet. Although the nurses say this is normal as she slowly wakes, the hardest thing to watch is our little girl have bouts of 'coughing' where her face turns red, her body trembles and stiffens, and tears roll out of her closed eyes. It breaks my heart to see her in pain. The nurses suction her ventilator tube to remove the yuckies and she then calms down. They have started to give her Adavan (sp?) to knock her out when she does this - her ICP's go sky high, so this helps bring those numbers down. Her hospital bed is a stuffed animal zoo - she is going to be so excited to meet her new animal friends when she wakes up - thank you for all of them!
Ava is doing ok. My mom flew out from France to take care of her, so she is living as close to normal of a life as she can, except for now mommy and daddy don't live at home, and she comes to the 'hosipal' every day for a couple of hours... we are not sure letting her see her sister is the best thing right now, so we just play in the courtyard or at the Ronald McDonald house. Tyler and I are hanging in there. We are so grateful and humbled by all of the love, dinners, thoughts, prayers and support that our sweet Emma is receiving. Thank you all for your continued prayers and positive thoughts.
~Love, Sophie and Tyler"
Sunday, October 4, 2009
We had the pleasure of joining forces yesterday to walk for Baby Emma Crew at the Rady's Children's Hospital walk around Sea World & Mission Bay. It started out as a gray morning, but by the end of the walk, the clouds had cleared & the sun was shining so bright. We were all hoping that same warmth we were all feeling was being felt by the Crew family as God's love and the support of the community, friends & family bubbled over for them!
We received an update late last night from Emma's Mom, Sophie:
"No changes today...Emma is having trouble re-absorbing her CSF so hoping for no more surgery to dump it out. Decreased meds and ventilator yesterday but not totally ready for all of the changes...baby steps... Thank you all for honoring Emma during the Rady's walk at Sea World today. We are so blessed to have such caring friends - you are ALL wonderful... thank you for the continued prayers. We miss our Emma..."
Thursday, October 1, 2009
Today we received some good news that Baby Emma is having another good day. She can now move both her legs and she squeezed her mom Sophie's hand with her RIGHT hand (which is the hand she had not been able to move yet). It is fainter than the left, but it's movement! So she is moving both hands and legs now! Still asleep, as it might take a few more days for the increased drugs to make their way through her system, but she seems to squeeze Sophie's hand in response to music or being read to, which is AMAZING! The doctors are saying that the movement in Emma's legs might be a sign that she will be able to walk someday!
Keep the prayers going everyone...they are so powerful & the Crew family is definitely feeling the love from everyone & the good Lord above.
Please sponsor the Snyder, Marchesano, Thompson & Amos families in a Rady’s Childrens’ Hospital walk this upcoming Saturday to benefit the hospital & also the “The Emma Crew Fund”, which has been set up to receive contributions to assist with the cost of medical care and treatment for Emma Crew, 14-month-old daughter of Sophie & Tyler Crew. Emma suffered a massive head trauma while at daycare on Friday September 18th, 2009. She remains in a coma in critical condition at the IC unit of Rady’s Children’s Hospital.
Sponsorships/gifts will be directed toward the mounting medical expenses that are being incurred as Emma receives treatment and her parents miss work to be by her side. Sponsorship checks for this walk can be can be made payable to SDCCU marked “Emma Crew Fund – Account #000368773100” & mailed to San Diego County Credit Union @ 6545 Sequence Dr. San Diego, CA 92121 (or handed to the Snyder, Marchesano or Thompson families).
**Please be advised that sponsorships/donations can continue to be made after the race also.
Please go to http://www.shamuandyouwalk.com/ for more information about the walk.
Expressions of love, concern, and prayer can be e-mailed to email@example.com.
Blessings & thank you for helping this family in need!
p.s. SPECIAL THANKS TO SAN DIEGO COUNTY CREDIT UNION FOR THEIR SUPPORT & FOR BEING SO HELPFUL WITH GETTING THE EMMA CREW FUND STARTED!!!
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Monday, September 28, 2009
Thank you to everyone who has been praying for baby Emma & her family. Emma is slowly starting to awaken from her coma and has been moving her feet & left arm, but unfortunately, not her right arm yet. The doctors are very worried about the health of her left brain, but everyone is staying positive & praying for miraculous healing.
Please continue to pray for baby Emma Crew, 14 month old daughter of Sophie & Tyler Crew. Emma suffered a massive head trauma while at daycare on Friday September 18th, 2009. She remains in a coma at the IC unit of Rady’s Children’s Hospital.