tag:blogger.com,1999:blog-79460921216143579642024-03-04T20:40:53.081-08:00What Used To Be Perfect But Now Is BrokenWe used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger434125tag:blogger.com,1999:blog-7946092121614357964.post-19934616938461927812013-09-03T17:15:00.000-07:002013-09-03T17:15:21.895-07:00Blogging through grief perhaps?I really think I need to start blogging again. It was always SUCH a release, and although I am on Facebook all the time now, it's not the same. Getting to just sit and type out whatever is in my mind, share lots of pictures, and just SPEAK, it's something I have been missing.
Where will I start today? We have been living without our Peanut for almost 17 months. ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com4tag:blogger.com,1999:blog-7946092121614357964.post-62981233539565710022013-04-04T16:19:00.002-07:002013-04-04T16:19:58.727-07:00Almost a year ....How is it possible that we have lived almost a YEAR without our Princess? I don't know if anyone even has my blog on their readers anymore, so maybe no one will see this. I am thinking of starting to blog again. About my journey on this side of the fence now. And I would like to invite anyone that read about Emily to "like" her memorial site on Facebook as well.
ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-87547984545082354072012-09-21T19:17:00.002-07:002012-09-21T19:17:42.319-07:00Emily Evans Memorial Donation DriveANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-49119337323929665992012-06-20T14:10:00.003-07:002012-06-20T14:10:24.646-07:00As it isThis new stage of our lives is difficult. Trying to continue on with life, attempting to smile when all we want to do is cry. Figuring out the answer when people ask "How are you" or the even more dreaded "How many children do you have?" I've been asked that once so far, and my answer made the lady cry. What a sucky thing to have to explain to someone. What a sucky ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-32191182788578505162012-06-15T16:09:00.002-07:002012-06-15T16:09:38.481-07:00Two months without our Princess ...It feels like forever. It feels like just yesterday. It feels like a nightmare. It feels like hell.
We are having a HUGE garage sale tomorrow, to raise money for Emily's headstone. We need to raise at least $1200. We are ordering it on Sunday (worst Father's Day present ever). We want it to arrive so that we can have it placed on her 9th birthday, ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com1tag:blogger.com,1999:blog-7946092121614357964.post-43263652882575207852012-05-31T10:13:00.001-07:002012-05-31T10:13:13.957-07:00How it happened
Many people have asked me about Emily's last week, days, hours, minutes ... and I haven't been able to tell almost anyone. This weekend, a very close and dear friend of mine (Hi Carol!) asked me and I told her. I went over the last week, the last day, the last hour, the last minutes. And it didn't hurt as bad as I thought it would. In fact, it feel good. It felt ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-76439270189056935022012-05-10T17:24:00.001-07:002012-05-10T17:24:23.874-07:00Adjusting?How are you supposed to get used to this new way of life? Being Emily's mommy is what I am. It's what I have been for the last 8.5 years. Yes I am Alex's wife, and Jacob's mom. But those things are easy and relaxing. Being Emily's mommy meant being her nurse, caregiver, mom, tube-feeder, catheterizer, med-dispenser, suction-machiner, therapy-doer, chauffer. So ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-33211575242281912002012-05-07T11:55:00.005-07:002012-05-07T11:55:41.834-07:00Three weeks ....I can't believe it's been three weeks since our sweet princess passed away. It feels like a million years since I last snuggled with her or touched her little face. If this is how horrible three weeks is, I can't imagine the rest of my life. :(
I miss you so much, sweet girl. I have never been anything more incredible than your Mommy. ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-21008501459170994442012-04-23T21:09:00.001-07:002012-04-23T21:09:53.471-07:00October 16, 2003 to April 16, 2012This is the post I have never, ever wanted to write.
Thank you all for loving my Peanut.
ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com36tag:blogger.com,1999:blog-7946092121614357964.post-73716621545870781822012-04-14T08:33:00.001-07:002012-04-14T08:33:39.665-07:00Waiting, cuddling, crying, lovingThat is what we are doing right now. Emily's fluids have been turned off and she is getting a lot of medications to keep her comfortable. All we can do now is wait, cuddle, cry, and love. And we are doing all those things.
Please pray for her to be peaceful, comfortable, not afraid, and for her to know how much we truly, truly love her. Our Princess. ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com41tag:blogger.com,1999:blog-7946092121614357964.post-64859465468625231642012-04-08T20:35:00.001-07:002012-04-08T20:35:33.963-07:00Weekend pictures
(Me and my girl)
We went to my Grandma's house yesterday. We took lunch and an Easter basket, and had a good time. Emily slept most of the time, like she does daily now, but she did wake up a bit to smile at my Grandma and Aunt, before going back to sleep. She was very uncomfortable in the car on the way home though. The drive is about 90 minutes each way. ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com30tag:blogger.com,1999:blog-7946092121614357964.post-71334414592691774812012-04-06T09:11:00.003-07:002012-04-06T09:11:40.256-07:00It's tough to type this update ....Emily is home from the hospital, and we are here to stay. She has appointments with three of her doctors on Wednesday, and I have a phone call in to her hospice team. We are making the switch formally to hospice at this time and will be doing whatever is necessary to keep her comfortable at home now. She is on a lot of medications and mostly sleeps all day. She wants to beANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com31tag:blogger.com,1999:blog-7946092121614357964.post-37556792971431744862012-03-22T14:43:00.001-07:002012-03-22T14:43:23.157-07:00Day by day (and stupid blog problems)Things here change daily, and even sometimes ultiple times a day. Keeping Emily calm and comfortable is proving hard to do. She ended up having a reaction to morphine, which we thought might happen. We have added meds, changed meds, increased meds. She is happy at the moment, which is awesome.
My blog is all messed up. It has something to do with the person who I paid to create the designANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-16516285803255626932012-03-21T08:45:00.001-07:002012-03-21T08:45:34.382-07:00Rough daysEmily has had two very rough days in a row. Emily has had a ton of coughing/gagging episodes that go on and on for hours. We have tried all her PRN meds and nothing helps. The only thing that helps a little is giving her some heavy narcotics to sort of knock her out. Mthere was a big team meeting last night about Emily. GI tells me the episodes are pulmonology, pulmonology tells me they are GIANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com3tag:blogger.com,1999:blog-7946092121614357964.post-26029968584104812132012-03-17T14:31:00.000-07:002012-03-17T14:31:12.742-07:00Waiting for more surgeryEmily is inpatient again. She had the UTI last week, and the antibiotic they had called in was not the right one. By the time the sensitivities came back, she had landed herself in the ER again. She had a fever of 101.2 and was trembling and lethargic. Her urine is still positive, so the antibiotic was changed. This time her blood cultures were positive as well.
Here's the thing. We go ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-59216567612159973032012-03-13T10:56:00.002-07:002012-03-13T10:56:39.765-07:00Bad blogger .... bad blogger!I just typed an entire long update and then my computer ate it. :(
The short version is that Emily is home right now on IV antibiotics for a urinary infection. We should know later today whether we can continue to keep her home and treat the infection or if we will end up inpatient. It depends on some final labwork.
Emily had a sleep study last week, to figure out the cause of her ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com3tag:blogger.com,1999:blog-7946092121614357964.post-48605843836492226002012-02-21T20:53:00.000-08:002012-02-21T20:53:31.163-08:00Another week, another ER tripEmily earned herself a trip to the ER yesterday, after a long 4 days of trying to avoid it. On Friday, she had a bronchospasm that lasted three hours. It was horrible, but she was managing to maintain her oxygen saturations, so I waited it out. It did worry me and I packed a bag for the hospital, but then of course the spasms stopped. It was definitely the scariest breathing episode she's ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-27069772302294393882012-02-07T21:19:00.000-08:002012-02-21T20:43:27.076-08:00Doing well at home!Emily had trach surgery on January 19th. She was discharged directly from the PICU on January 27th, the day before my birthday! What a great birthday present. She did great during the trach surgery, and was smiling within 6 hours of surgery. She is amazing! She came off the vent in recovery and was off oxygen and on room air within 24 hours. :) She's a rock star!
Being home was a bitANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-85032079858536229912012-01-14T18:00:00.000-08:002012-01-14T19:21:46.586-08:00We made the decision ...Emily was discharged from the hospital last Thursday late at night, after a 16 day stay and antibiotic treatment for a line infection. She gets line infections because her motility is horrible, and causes a leaky gut. So we went home Thursday night, and I got her TPN prepared. When I lifted her shirt to connect the TPN to her Broviac, I realized that the nurse who discharged us must have ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com17tag:blogger.com,1999:blog-7946092121614357964.post-53539413317216520582011-12-27T10:52:00.001-08:002011-12-27T10:52:15.472-08:00Christmas in the Big HouseNo, I didn't get arrested before Christmas. ;) Emily was admitted to the hospital the Monday before Christmas. She had another blood infection caused by a bacteria translocation from her gut. Unfortunately, there is nothing we can do about a leaky gut. She would get these same blood infections even without a central line. She was started on massive antibiotics, and remains on three of them ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com4tag:blogger.com,1999:blog-7946092121614357964.post-13101583243863721692011-12-12T11:01:00.000-08:002011-12-12T11:01:59.480-08:00It's almost Christmas!It is hard to believe that it is almost Christmas. It seems like this entire year just disappeared. It doesn't help that we spent the majority of it in the hospital, I suppose.
Emily is doing well. She has been home for 3.5 weeks straight right now, knock on wood! She is having some more severe gagging and retching spells lately, and I think we are missing a key piece of this puzzle. I ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-331434121322760422011-11-26T20:38:00.001-08:002011-11-26T20:46:33.976-08:00Getting ready for the holidays and cleaning houseI am trying to take advantage of Emily being home from the hospital to get our house cleaned up. It is absolutely embarassing what it looks like right now. We had some friends over last weekend (hi Lacey!) and I realized after they left how horrible my house looks right now. It seems like we are never home long enough to complete a project. Mainly what I do is just organize the crap wherever ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-72582051577086762992011-11-21T15:13:00.001-08:002011-11-21T15:16:56.672-08:00Thankful for ThanksgivingWe are home now, and so thankful to be here! The good days more than make up for the not-so-good days. Emily is sleeping a lot lately, but when she's awake she's happy. She is always in and out and in and out of the hospital, so we love the out times. This weekend we got to spend a day at Disneyland with a bunch of friends. Emily did great! She loves going on rides, especially Small World.ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-56837920125286916242011-11-21T09:59:00.001-08:002011-11-21T09:59:35.477-08:00The Tostinos/redbox winner is ...The Enriquez Family!! Sorry I don't have a picture of Jacob drawing the name from a pink hospital wash bin but my camera is missing. :( Anyway, congratulations to the Enriquez Family! Please email your mailing address to me at waffle1313 @ gmail. com. :)ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com0tag:blogger.com,1999:blog-7946092121614357964.post-85779593136640313972011-11-17T16:34:00.001-08:002011-11-17T16:49:33.046-08:00Totino's Pizza Rolls and Redbox GiveawayYou all know how often our family is home together and has time to relax. Just about never. So when we are all home and no one is at the hospital and everyone is feeling good, the last thing I want to worry about is making dinner! Thankfully there are many options for frozen dinners and treats that are easy and delicious.
Right now there is a great deal going on! Look for specially-marked ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9