tag:blogger.com,1999:blog-79460921216143579642012-02-09T19:07:24.071-08:00ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger4171100tag:blogger.com,1999:blog-7946092121614357964.post-27069772302294393882012-02-07T21:19:00.000-08:002012-02-07T21:19:39.909-08:00

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 bit

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-85032079858536229912012-01-14T18:00:00.000-08:002012-01-14T19:21:46.586-08:00

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-53539413317216520582011-12-27T10:52:00.001-08:002011-12-27T10:52:15.472-08:00

No, 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-13101583243863721692011-12-12T11:01:00.000-08:002011-12-12T11:01:59.480-08:00

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-331434121322760422011-11-26T20:38:00.001-08:002011-11-26T20:46:33.976-08:00

I 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-72582051577086762992011-11-21T15:13:00.001-08:002011-11-21T15:16:56.672-08:00

We 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-56837920125286916242011-11-21T09:59:00.001-08:002011-11-21T09:59:35.477-08:00

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-85779593136640313972011-11-17T16:34:00.001-08:002011-11-17T16:49:33.046-08:00

You 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.com9tag:blogger.com,1999:blog-7946092121614357964.post-145718107710617352011-10-21T11:45:00.001-07:002011-10-21T11:45:08.546-07:00

Emily had an amazing birthday party. So many of our special friends made it and she got some lovely gifts. We are very lucky to have so many great people who love our girl! The next day we went to the Mattel Children's Hospital Party on the Pier, and it was a blast. Wednesday Emily had outpatient surgery to scope her Mitrofanoff and dilate it. They did a ton of bloodwork beforehand, and they

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-16839902493951456172011-10-14T12:56:00.000-07:002011-10-14T12:56:50.817-07:00

Emily turns 8 on Sunday, and her big party is tomorrow. When I say big, I mean big. It started out small, of course ... and then we have a horrendous year with her in the hospital so much. There were a couple of times where we weren't sure if he was going to survive, including just last month. So the party got BIG. I cannot wait, and I will definitely share lots of pictures afterward!

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-29803857890947480082011-10-07T10:50:00.000-07:002011-10-07T11:00:20.468-07:00

Oh, I guess I didn't even mention that we were admitted again. I have a hard time updating lately, and thinking of something witty to say. Emily had TPN clinic last Wednesday. During the appointment, I caught her TPN tubing on her wheelchair while lifting her to the exam table, and broke her central line. You know, that pesky little life-saving line that goes to an artery directly next to her

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com21tag:blogger.com,1999:blog-7946092121614357964.post-12396901970234058172011-09-11T14:36:00.000-07:002011-09-11T14:36:02.684-07:00

I posted that last post because I didn't want to sit and type out what is on my mind and in my heart. I just wanted to update that we are home, and perhaps it would come across as a happy post. Which it is, because we are home. But my heart is not happy. :( Emily is on a LOT of medications. She is on sedatives, narcotics, pain meds, and more. She is SO knocked out, because it is the only

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com23tag:blogger.com,1999:blog-7946092121614357964.post-73787946555038583472011-09-11T14:20:00.000-07:002011-09-11T14:20:16.984-07:00

Emily came home Thursday from the hospital, and we are so glad to be at home! Beyond glad though, we are tired. She gets meds 12 different times through-out the day. Plus cathing, emptying her g-tube drain bag, IV antibiotics, etc ... it is non-stop. I imagine that some day in the future I will be able to cook dinner again, right?

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com2tag:blogger.com,1999:blog-7946092121614357964.post-85767601559770562592011-09-04T10:51:00.000-07:002011-09-04T11:08:08.573-07:00

Emily has been inpatient for almost 4 weeks straight now. She has battled two blood infections, a urinary tract infection, a line removal and a line placement, multiple xrays/CT scans/ultrasounds/labs/cultures/etc. She is still dependant on the pain pump to get through her days. We are supposed to start her on an oral med though her j-tube, in order to get her off the pain pump. Unforunately

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-708493158438196472011-08-29T22:13:00.000-07:002011-08-29T22:14:14.300-07:00

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com0tag:blogger.com,1999:blog-7946092121614357964.post-22003956538693733462011-08-29T21:39:00.000-07:002011-08-29T21:47:25.054-07:00

Emily was weaned off the pain pump, only to have unexplainable pain episodes all day. We have run every scan and test imaginable, and no one can find anything. She screams and writhes around and bites herself (or me). She tears out her hair, bangs her head, and screeches. It is horrible. It comes on suddenly - she will be fine for a minute or two, and then go abruptly into this. It can last

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com13tag:blogger.com,1999:blog-7946092121614357964.post-32431492668472472262011-08-13T13:10:00.001-07:002011-08-13T13:11:03.670-07:00

blogger sucks. (ETA) I realized that I posted this update from FB here, and didn't post before this. So we were told her stomach ultrasound showed possible kidney stones. Then we did an xray to confirm and it was shown that she has a possible obstruction or ileus in her intestines. So we did a CT scan, that showed a large abcess next to her bowel, with contrast in it, most likely caused by a

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-32675077468160667412011-08-13T13:06:00.000-07:002011-08-13T13:07:22.476-07:00

Just heard from Alex. Emily's broviac line is growing yeast. :( She is starting on antifungals for it, and the line will be pulled Monday in the OR. A new broviac won't be placed until they are sure the infection is cleared. GI is upset about the CT scan issue. He is insisting that the two radiologists sit down Monday and discuss WHAT they are seeing, since they are not agreeing on what it

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-77442017946208261682011-08-11T22:53:00.000-07:002011-08-11T22:56:28.968-07:00

For anyone who doesn't follow us on Facebook, Emily is back in the hospital. She has either an ileus or a partial obstruction. Her pain is out of control and she is really, really sick. She finally got a pain pump of Nubain, on top of all the other lines/meds getting pumped into her. She is knocked out. I am going to try and sleep, although I am so heartbroken and sick to my stomach I don't

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com16tag:blogger.com,1999:blog-7946092121614357964.post-54323161329630300742011-08-05T21:25:00.000-07:002011-08-05T21:32:48.760-07:00

Emily seems to have this horrible cycle of days that we can't get over. Just when she has a few good days in a row ... they come to a halt. Tuesday Emily had three long seizures, after not seeing anything major in almost two weeks. Then she went to sleep that night, and woke up seizing. She was struggling to breath and wouldn't come out of it. I didn't feel comfortable giving diastat when

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-12692744273698111062011-07-29T21:08:00.000-07:002011-07-29T21:19:22.563-07:00

Sometimes, we all get in a funk. I'm in one now, up to my shoulders. The easiest thing to do is hide myself away in the house, soak up the misery, and wait it out. Unfortunately, Emily is very high needs and soaking in misery is not an option. Rather, I am running around all day doing her medical care and trying to sprinkle some play and love and cuddles in, while splashing in the misery

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com20tag:blogger.com,1999:blog-7946092121614357964.post-21811216174108450112011-07-28T10:51:00.000-07:002011-07-28T10:55:13.154-07:00

I spoke to the GI on the phone yesterday morning and we decided to wean off the Baclofen that was started to help with Emily's retching. I told her that we hadn't noticed a difference. Then my husband reminds me that Emily didn't wake up retching yesterday morning. She just woke up. It was such a NORMAL thing, that it didn't strike me as to how abnormal for her that was! This morning, no

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com10tag:blogger.com,1999:blog-7946092121614357964.post-8448213789213812872011-07-26T21:33:00.000-07:002011-07-26T21:37:20.851-07:00

We decided to go out of town last weekend, to visit friends and support them with a fundraiser. They had a second annual bbq fundraiser to raise money for the Foundation for Children with Microcephaly. Emily doesn't like being away from home and was a grump most of the trip, but it was SO nice to get out of town for a few days! We visited the Charles Schulz (Charlie Brown creator) museum, and

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-43744719179331765092011-07-21T11:06:00.001-07:002011-07-21T11:12:33.450-07:00

We had TPN clinic yesterday, and I think I left equally frustrated as I arrived. It went beyond the fact that we weren't seen until 3:45, and our appointment time was 2:40. I make appointments for as early in the day as possible when we go to UCLA, because the traffic coming home gets horrid. It took me over 2 hours to get home, and it's only 42 miles. The good news is that Emily weighed 15.9

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-51796250716655371192011-07-20T08:51:00.000-07:002011-07-20T08:54:51.016-07:00

Emily has an appointment at the TPN clinic today. I am nervous. She is in a bad way again. Retching all morning, throwing up meds, grumpy most of the day. I hate this for my girl!!! I am fearing that they will want to admit her again. I am going to be strong and tell them NO. We have a 4 day trip planned, we are leaving Friday through Monday. We are going to visit some friends and have a

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com3tag:blogger.com,1999:blog-7946092121614357964.post-89279147684128727272011-07-17T12:38:00.000-07:002011-07-17T12:43:46.506-07:00

We are doing good at home so far, KNOCK ON WOOD! :) Emily retches every morning for a while but it's not too bad. She is her normal happy self otherwise! As long as Fresh Beat Band plays over and over (thank heavens for DVR) she is content. She is playing with her toys and happy. It's so nice to be back at our "new kind of perfect". :) I am in the midst of a huge organizing stretch. This

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-87892336187338530302011-07-15T19:58:00.001-07:002011-07-15T20:09:38.677-07:00

I'm sorry I haven't updated since the last post, which was quite a crisis time. She stabilized that night, and hasn't had another episode like that. Thank goodness! The metabolic geneticist came in the next day and talked to us in depth. He feels that the episodes were not true metabolic crisis but rather a reaction to pain. It makes a lot of sense, when we review it looking back. Her

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-72132781572977931842011-07-09T22:21:00.000-07:002011-07-09T22:24:52.290-07:00

Emily was re-admitted to the hospital on Thursday. She is back to retching, gagging, screaming. Her g-tube is draining so much that she is on an IV of fluids in addition to her TPN. Today she has had three horrendous episodes of what appear to be metabolic crisis. She screams hysterically, cramps up, her legs and arms get bent and stuck, she shakes and trembles, and drools and gags. The last

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-23362974179384626602011-06-28T15:18:00.000-07:002011-06-28T15:23:42.034-07:00

I cannot believe my baby is eleven! I can't believe I am old enough to have an 11 year old! Wow. He had a Harry Potter themed party on Saturday and it was a good time. It was the most relaxed, calm party he's ever had. He only invited 5 kids, and it was calm and they just played and went to the park for a while. We did a pinata, and make your own potion station (little containers from Ikea

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com3tag:blogger.com,1999:blog-7946092121614357964.post-37632593038581444472011-06-21T12:27:00.000-07:002011-06-21T12:52:32.647-07:00

I haven't kept this blog updated, and I feel bad for that. I hope that most of you have found me on facebook, because I am better at updating there. I have lost almost 50 followers over the last 4 months. :( Hopefuly I can earn them back!So here's the recap. Emily had been retching and vomiting every morning for months. It started in January, and progressively got worse. She had been

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com18tag:blogger.com,1999:blog-7946092121614357964.post-59709750069117994482011-05-25T09:13:00.000-07:002011-05-25T09:15:42.504-07:00

I have typed up an update three times, and all three times it has been eaten by Blogger. I will try again later.Equally annoying, if not MORE annoying, is that Blogger won't let me comment on anyone else's blog. It has me log in to the google account, then enter the "word scramble thing". Then when I hit submit it has me log in again. Then unscramble. Then log in. Then unscramble. Rinse

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-29323851179856675362011-05-06T08:19:00.000-07:002011-05-06T08:28:03.364-07:00

Emily is still in the hospital. She had a broviac placed yesterday, since she pulled her PICC line out for the second time. She is getting TPN 24 hours a day through the line. She is still not tolerating anything in her stomach, except for tiny amounts. She can handle a 5 ml dose of medication, but usually the ones that are 10 ml get retched up still. Her Upper GI (three of them), endoscopy,

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com17tag:blogger.com,1999:blog-7946092121614357964.post-84775384360143702252011-05-01T22:07:00.000-07:002011-05-01T22:08:01.744-07:00

We are still in the hospital. I will try and get on here tomorrow to post an update.

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-9882493225295461852011-04-18T16:09:00.000-07:002011-04-18T16:12:13.739-07:00

Long story short, we didn't get transferred on Friday. We got discharged and went home. Sunday was about the worst day she had so far, so we went to the ER. This time we went to the hospital where our neurology team is. Emily is hooked up to an EEG right now, and then we will be getting a GI second opinion. They agree here that her quality of life has gone downhill to a point that is

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com17tag:blogger.com,1999:blog-7946092121614357964.post-20131425904804752312011-04-15T16:11:00.000-07:002011-04-15T16:15:45.584-07:00

We are still in the hospital. Our Children's Hospital can not figure Emily out, so we are being transferred today to the hospital where our neurologist and neurosurgeon are. We will be consulting with them, and getting a second opinion from their GI team.Emily has been in and out since March 13th, with only 5 or 6 nights home in that time. I am exhausted. Her GI tract is a mess. She can

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-22222259974835877552011-04-10T14:48:00.001-07:002011-04-10T14:57:29.074-07:00

(I need to state first for the record, that the picture above is a bit deceiving. Emily looks like she has a little paunch belly, doesn't she! She is really skin and bones, this was bloating. I wish her tummy was round like that!)Emily had her VNS surgery on Wednesday, everything went great with that! She was in recovery for about an hour and a half, and we were discharged. Then Thursday

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com13tag:blogger.com,1999:blog-7946092121614357964.post-16570934015061095202011-04-05T11:26:00.000-07:002011-04-05T11:32:56.108-07:00

That's how we have been lately. In the hospital, out of the hospital. In the hospital, out of the hospital. Three weeks ago it was two trips in a row for seizures. Then on the 24th it was in for feeding intolerance, retching, pain. That stay lasted 12 days and we were finally discharged, but TPN dependant. Her g-tube was switched to a gj-tube, and she doesn't tolerate j-feeds any better

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-89451079789583168532011-03-22T21:22:00.000-07:002011-03-22T21:24:21.607-07:00

It's been a long time since I posted again! I wish I could come up with an extra 30 minutes every day to sit and post.Emily has been in and out of the hospital. Right now she's inpatient. She has air in her bowel wall and possibly her chest, she isn't tolerating feeds, she's losing weight, she has blood in her stool, etc. The GI thinks it's related to whatever mitochondrial disorder she may

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com20tag:blogger.com,1999:blog-7946092121614357964.post-66332146038955488442011-03-06T00:00:00.000-08:002011-03-06T00:00:03.867-08:00

This is the week of giveaways on my blog! :) I am excited to share some information about Chex Mix with you, and offer you a chance to win a prize package.I received a box of Rice Chex, a measuring cup set and a Chex® Party Mix tote bag from General Mills through MyBlogSpark. We made Muddy Buddy Chex Mix, and it was a huge hit! Even my 90 year old Grandmother loved it. For decades, savvy

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com18tag:blogger.com,1999:blog-7946092121614357964.post-19486443604730605042011-03-05T19:28:00.000-08:002011-03-05T19:41:44.445-08:00

First off, congratulations to Joan's Blessings - you are the winner of the Yoplait giveaway! Please email me your name and address. MyBlogSpark will then mail you your gift pack. :)Okay, so I took a few days to stew over what the metabolic dr talked to me about, and I am in a better place with it. We know that Emily has some genetic condition that is yet to be diagnosed, this is not a

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com3tag:blogger.com,1999:blog-7946092121614357964.post-71208192783105723582011-03-04T22:10:00.000-08:002011-03-04T22:18:27.986-08:00

I didn't have Jacob draw a name yet for the Yoplait giveaway, I will have him do it this weekend. Sorry for the delay.Emily has had a crappy seizure week. She got Klonopin many, many, many times for seizures. She got Diastat twice this week. Once was at a metabolics appointment, where we threw her on a pulse ox machine and she was satting at 88 percent. Not great. :( I called her insurance

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-32658013398980615272011-03-02T00:00:00.000-08:002011-03-02T00:00:12.450-08:00

I was happy to get a package from MyBlogspark.com recently! Inside was coupon to try Yoplait Frozen Smoothies, a drawstring backpack, a water bottle and a fitness journal. We went and bought our Smoothie packages. We got two packages of the Strawberry Banana flavor, because it says that one package is only 2 servings and there are three of us.Including Yoplait Frozen Smoothies in your diet is a

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-44103463692628464412011-03-01T16:16:00.001-08:002011-03-01T16:21:09.361-08:00

One of the best parts of being online and having friends with special needs kids is that we all support one another, help one another, and fall in love with each other's kids. One of the worst parts of being online and having friends with special needs kids is that our heart breaks as we lose our sweet loves. Little Maggie held a special place in my heart. Her mom, Michelle, had contacted me

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-15191647041168751372011-02-23T11:21:00.000-08:002011-02-23T11:36:18.130-08:00

That means we are almost one month closer to summer! Which means I am almost one month closer to NOT being PTO president anymore! LOL I am soooo over this. In more pertinent news, Emily is going to the neurologist on Monday for a follow-up. We haven't actually seen our neuro since she got the diagnosis of Lennox-Gastaut Syndrome back in November. We have been inpatient since then and seen

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-67454144319934053912011-02-15T21:58:00.000-08:002011-02-15T22:10:15.404-08:00

We met with the neurosurgeon yesterday, and I really liked him. He was very personable, and explained things completely. I already knew all about the VNS from researching it so much and talking to other moms, but it was nice to have it all laid out by him anyway. We went over all the "informed consent" that he required, and then I signed consent forms. Now I just wait for the authorization

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-8358784116364241222011-02-14T09:14:00.000-08:002011-02-14T09:20:37.712-08:00

We meet the neurosurgeon this afternoon for Emily's VNS consult. Last night I (stupidly!) mentioned to my husband that she hadn't needed Diastat since Friday morning, and her seizures had been mild for the last two days. She then woke up at 4:30 this morning seizing off and on, and by 5:30 required Diastat. Now it's 9:15 and she just had three atonic (drop) seizures back to back and then fell

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-44900192039416927542011-02-10T18:47:00.000-08:002011-02-10T18:50:30.504-08:00

Well I am stuck in it. I imagine I have lost a bunch of my followers since I haven't posted in FOREVER. I hope I can get you back!!I really do retreat when things are crappy, and things are definitely crappy lately. Emily has a kleb. bacterial UTI right now. We spent the afternoon in the ER doing chest xrays and nasal flu swabs. She has been retching and gagging and coughing up this phlemy

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com16tag:blogger.com,1999:blog-7946092121614357964.post-42015141173994229392011-01-23T09:31:00.000-08:002011-01-23T09:35:30.980-08:00

It's 9:30 am and I haven't seen a single seizure since Emily woke up. KNOCK ON WOOD! Bang bang bang. :) Some have asked me about her medications ... she is now on Keppra and Banzel, both twice a day. She was weaned off Trileptal. She gets klonopin dissolvables orally for seizures over 3 minutes, and then a second dose 15 minutes later if she's still seizing. If she continues to seize 30

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-3162309025353301442011-01-22T14:28:00.000-08:002011-01-22T14:33:45.174-08:00

Again I find myself not updating. I am quick to update on Facebook because I can do it from my phone, but I have a harder time sitting down here to really type things out. Emily is no better. I have had to pick her up from school this week a few times, due to increased seizures. On Friday it was the worst. She has gotten her rescue meds (clonazepam wafers and diastat) daily. Her seizures are

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-35418269500195598042011-01-15T15:49:00.000-08:002011-01-15T15:58:50.283-08:00

I have come to realize that different people blog differently. Some people are able to blog daily, regardless of how busy their lives are, and keep everyone up to date. Some people blog when things are rough, because the support we get online is irreplaceable. And then some of us, when times are tough, bury ourselves in our lives and hide from our blogs. Not that I don't want to blog and tell

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com28tag:blogger.com,1999:blog-7946092121614357964.post-36637316025322497672011-01-08T20:32:00.000-08:002011-01-08T20:38:49.235-08:00

Emily is going to step three of four tomorrow on her Banzel titration. That means we are just on step two right now .... and KNOCK ON WOOD ... she is doing awesome! She has had less seizures yesterday and today for sure. The only bad thing is that the side affect is sleepiness/sedation and she was feeling that today for sure. She was whiny and tired which makes her mean. I know she doesn't

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com14tag:blogger.com,1999:blog-7946092121614357964.post-4506420747375725402011-01-03T11:09:00.000-08:002011-01-03T11:21:28.905-08:00

I wish all my blog readers the best in 2011 and pray for health and calm. :)Our 12th anniversary was on New Year's Eve. Yay us! Who could have guessed, 12 years ago, that we'd be staying home on NYsEve and playing Wii and not getting drunk? Oops, sorry Mom. What I meant was ... ahh ... nevermind. ;)Jacob fell asleep at 11:00 or so, and I had promised to wake him up before midnight. Emily

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-82915161828931414822010-12-29T08:28:00.000-08:002010-12-29T08:54:17.876-08:00

Thank you to everyone who replied to the post below, or has offered support on Facebook recently, or emailed us. It's always overwhelming how much love I feel from people I've only met online. You guys who "get it" are awesome. Thank you for being my friends!! :) This spinning top toy is Emily's favorite Christmas present. She loves it! The music and animal sounds are so easy to activate, by

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-20432089086190392772010-12-27T10:36:00.000-08:002010-12-27T10:37:55.154-08:00

I keep sitting down to upload fabulous photos and describe the wonderful Christmas we had ... and not getting very far. Damn seizures will not give my girl any peace. So intstead I spend hour after hour just holding her in the rocking chair and watching the stupid cartoons that she loves so much. Soaking up her giggles at her favorite characters as I try not to go insane at DJ Lance Rocks. At

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com16tag:blogger.com,1999:blog-7946092121614357964.post-11581406386105616092010-12-18T14:13:00.000-08:002010-12-18T14:17:20.829-08:00

I have lusted after this tricycle for Emily for literally MONTHS. They are normally $200, so it's always been beyond our budget. A fellow blogger, Dream Mom, posted a link to this FANTASTIC sale - it's only $49!! It has free shipping, but it won't arrive before Christmas. Luckily Emily doesn't understand Christmas or gifts, so she won't be sad when it comes after the holiday. And if you want it

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-3231048164041396922010-12-17T20:25:00.000-08:002010-12-17T20:26:34.208-08:00

Winter break starts today. We have no school for two weeks. It's raining, and supposed to rain for the next few days. I foresee some pajama days in our future! :) I am glad for the break from school and to just relax.Now if Emily could just get a break from these damn seizures .... life would be good.

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-38498474551701594782010-12-12T19:55:00.001-08:002010-12-12T20:15:43.949-08:00

We have been very busy lately, but it's a good kind of busy! We have been decorating, finishing up the Christmas tree, baking lots of cookies, shopping, and just BEING! Emily's seizures are pretty tame lately (knock on wood). We have been loving the weather here, today it was almost 80 degrees!Jacob kept telling me to take his picture today. This series is him posing. There were many, MANY

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-35040390217622353832010-12-09T19:37:00.001-08:002010-12-09T19:39:41.602-08:00

Bright And Merry Christmas CardShutterfly Christmas cards View the entire collection of cards.I have never been this behind in getting my cards sent out! Ugh. I finally made them online which was SUPER easy thanks to Shutterfly! Now I just wait for them to arrive so I can send them out. If you would like to exchange cards, PLEASE email me your address! I love sending and receiving holiday

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-88195701135249356022010-12-05T19:44:00.000-08:002010-12-05T19:56:38.542-08:00

My sister was due on Thanksgiving and finally had her little girl yesterday, Saturday! I have been offline most of the week, back and forth to the hospital. She was going in daily for nonstress tests and ultrasounds to monitor her fluid levels. Finally on Friday at noon she was induced, and she labored until 5pm on Saturday. She had a strong epidural in place so she was comfy, but definitely

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-37908054031836834532010-11-30T19:26:00.000-08:002010-11-30T19:35:30.653-08:00

Emily has had a rough week so far seizure wise. She hasn't had any big seizures thank goodness, but it seems like non-stop small ones. Yesterday after she left school in the afternoon she had a seizure on the bus. Her head dropped down and didn't come back up. The bus driver pulled over and checked on her. She was breathing fine, but was completely unresponsive. She called dispatch and they

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com13tag:blogger.com,1999:blog-7946092121614357964.post-4715032694431483472010-11-28T08:54:00.000-08:002010-11-28T09:05:23.159-08:00

Ever since having kids, the only Christmas cards we send are photo cards. I imagine that if I sent my parents or in-laws a regular old holiday card with no photos, there would an uprising! :) It's always an interesting photo shoot while I try to get both kids smiling and looking cute, but the cards are worth it. Each one goes in my scrapbook for that year as well, as a lasting memory. I even have

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-18699045586216407172010-11-26T14:45:00.000-08:002010-11-26T14:57:58.578-08:00

Jacob and my brother, Mike, discussing something serious evidently! "Did you get that kid?" "Huh?" LOL Emily's face right after I made her taste pumpkin pie. She spit it out and wiped her face on daddy's shirt! LOL Thanks Uncle Mike, for squirting the whipped cream directly into Jacob's mouth. That was fun to clean up with he laughed so hard he spit it out all over the kitchen floor! Jacob

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-85241270817868041122010-11-23T08:48:00.000-08:002010-11-23T09:03:06.097-08:00

There are not many things that are more magical than Disney at the holidays The entire park is made over with Christmas decorations. It is quite amazing! :) What is more amazing is getting to go enjoy it with good friends with awesome kids. We spent the day at Disneyland yesterday with Jaxson and family, as well as sweet Ella's big sisters. Ella was busy getting her g-tube placed in the morning,

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-21942874364338700772010-11-18T12:16:00.000-08:002010-11-18T12:25:18.149-08:00

This has been a quiet week, as we recover from the hospital stay and prepare for Thanksgiving. The kids have all week off of school next week, and on Monday we are meeting up with Lacey and family. We are SO excited to meet Arina!!! The plan is to go to Disneyland with them, but the news just said it's supposed to rain ... not sure what we'll do. All I know is that I cannot WAIT to hold Arina

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-72667096394424750002010-11-17T19:21:00.000-08:002010-11-17T19:25:51.421-08:00

A friend emailed me a link to this song by Annie Lennox called Universal Child. It guarantee it will bring you to tears. It is SO point on for our kids! Here are the lyrics ...How many mountains must you face before you learn to climb.I'm gonna give you what it takes, my universal child.I'm gonna try to find a way to keep you safe from harm.I'm gonna be a special place, a shelter from the

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-74214247599909880782010-11-15T20:04:00.000-08:002010-11-15T20:13:47.182-08:00

I love blogging. I love Facebook. I love that people I have never met truly care about my Emily. I love that we can all talk and offer advice, suggestion, and love to one another. It's amazing! :) I wanted to answer a few things asked in comments lately. The ketogenic diet has been suggested to me many times now, and I wish we could try it. The neurologist last week even said it would be

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-4584264392415653722010-11-14T14:47:00.000-08:002010-11-14T14:50:20.615-08:00

Jacob hasn't cut his hair since before school started last year. September 2009! It is gorgeous, but as anyone with curly hair knows it is a pain in the butt to keep neat. I got tired of nagging him to brush it out and clean it up before school. I told him he got one more chance and we were cutting it. He decided he was ready, so he and Dad went off today for buzz cuts. :) Doesn't he look so

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-48283222727363617302010-11-12T09:07:00.000-08:002010-11-12T09:53:58.557-08:00

We were inpatient for 4 days of continuous VEEG testing, and a PET scan. They end result is that Emily is having myoclonic and atonic seizures all day, every day. She has them so often that the neuro said "There's one. There's one. There's one" in between sentences while talking to us. Ugh. There is no focal point for these seizures, they come from all over her brain. We didn't manage to capture

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-6747666156614470022010-11-06T20:45:00.001-07:002010-11-06T20:52:06.870-07:00

I am nervous and excited and dreading this admission. I am excited because finally it seems like we might get some answers about Emily's seizures and what we can do to stop them. I am nervous because the neuro says we will be backing off and then cutting all three seizure meds probably, in order to get her to seize a lot and get good information. He told me that, with a warning that cutting all

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com14tag:blogger.com,1999:blog-7946092121614357964.post-28393873520197483552010-11-01T19:19:00.000-07:002010-11-01T19:45:06.432-07:00

Every Halloween my Dad's company does trick-or-treating in their office. All the children and grandchildren are invited. We have gone every year since Emily was born. Here are all the pictures, including this year! (Okay, so I can't find pictures from 2003 when Emily was born) This year, I had an awesome hippie and an adorable minnie Mouse! :) A beautiful gypsy girl, 2009 Our silly family, 2009 A

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com18tag:blogger.com,1999:blog-7946092121614357964.post-24700932393972951552010-10-27T15:04:00.000-07:002010-10-27T15:07:57.998-07:00

Emily has had a pretty horrible no good bad kinda week. She has been retching and gagging like crazy, non-stop. I can't imagine how horrible it must feel. :( Her lips literally turn blue when she retches so much because she can't catch her breath. Her seizures are kicked up as well. Yesterday she seized on the walk to the bus, as I was putting her on the bus, and three times on the (hour

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15tag:blogger.com,1999:blog-7946092121614357964.post-13114354326369341432010-10-25T14:39:00.000-07:002010-10-25T15:34:19.025-07:00

It is considered pre-op, as we are doing a lot of seizure/brain testing. We are doing a LT VEEG, MRI, and PET scan. They are hoping it will isolate a seizure starting point that they can resect. If not, then we are talking seriously about a vagus nerve stimulator. We are scheduled for at least one overnight, and up to five or so according to the scheduler. They want to capture at least three

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-69052994356837935482010-10-23T11:29:00.000-07:002010-10-23T11:33:32.073-07:00

We decided finally what to wish for, for Emily. We were thinking of a trip, a vacation, a cruise. In the end, we decided that although she would like any of those things, her house and her bedroom are her favorite places of all. She was denied a Sleep Safe Bed through her insurance, so we are asking for that. They are going to propose that we get a new bed, an EmFit epilepsy monitor for the bed

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com19tag:blogger.com,1999:blog-7946092121614357964.post-60172661278864821962010-10-17T19:12:00.000-07:002010-10-17T19:23:47.587-07:00

Emily did not want anything to do with opening presents! All she wanted was to get back in the bouncy house, which she LOVED. Our little friend Jocelyn. She was SO excited over the lollipop from the pinata! Our friend Brady taking a turn at the pinata. Our friend Ryan taking a turn at the pinata. All the kids on a mad candy scramble. Emily and her pinata! Happy birthday big girl! The party in

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com18tag:blogger.com,1999:blog-7946092121614357964.post-4205553768199938742010-10-16T07:49:00.001-07:002010-10-16T07:52:11.327-07:00

A peanut was born! Happy birthday to my sweet girl!She was 7 months old in this picture, her newborn time is not on this computer. :) Please help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE Any amount helps, even a few dollars. :)Thank you!

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com21tag:blogger.com,1999:blog-7946092121614357964.post-43634160886796616392010-10-14T15:13:00.000-07:002010-10-14T15:43:02.334-07:00

Emily is a second grader this year, but she is mainstreamed into the kindergarten class through-out the day still. She is very social and she LOVES it. She does circle time on the mat, calendar time, art time, and recess. The kindergartners adore her, and she has a great time with them. She's tiny, still the size of a small kindy kid, so it's a great fit. This year, I asked at her IEP for

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-26308782786314003602010-10-12T07:23:00.001-07:002010-10-12T07:25:38.960-07:00

Sweet Bella went to heaven yesterday, after fighting an amazing fight. She recently had a bone marrow transplant for Epidermolysis Bullosa. She had a long 100+ day UCI stay afterwards and her little heart just couldn't take it anymore. Please raise their family up in your prayersPlease help us raise money for our Children's Hospital!Donate to Princess Emily's team for the CHOC Walk!CLICK HERE

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-47332295693324037932010-10-10T19:49:00.000-07:002010-10-10T19:59:10.194-07:00

This weekend we had a baby shower for my sister, she's due at Thanksgiving with a little girl named Kaitlin. It was a lot of fun and she got a ton of stuff. :) It's going to be so fun to have a little girl around to spoil, and then send home! Hehe I am so excited. This will be my first neice. After the baby shower we went to my parent's house for a bbq, since the weather was so nice. We

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com5tag:blogger.com,1999:blog-7946092121614357964.post-66046241064103794132010-10-07T13:33:00.000-07:002010-10-07T13:49:14.698-07:00

First, I have to say thank you to everyone who reads here, posts comments, follows us on Facebook, etc. You guys are all awesome and you definitely keep my spirits up when I am stressed. THANK YOU! :)We saw Dr. Lerner at UCLA. He was incredible. His personality is fabulous, he flirted with Emily, he was so good at explaining things, and I felt like he really wants to help. He asked me about

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com13tag:blogger.com,1999:blog-7946092121614357964.post-51808490878066809022010-10-07T06:00:00.000-07:002010-10-07T06:06:15.454-07:00

Today's the day! Finally ... we have been waiting anxiously for our UCLA Epilepsy Center appointment since July. Since then her seizures have done nothing but get WORSE over time. With the new med she's on (since her last hospital stay two weeks ago) she isn't having tonic/clonic seizures, and she isn't clustering. But she is still having constant seizures, every day. It's getting to the

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com4tag:blogger.com,1999:blog-7946092121614357964.post-29597747264459705412010-10-02T13:20:00.001-07:002010-10-02T13:27:16.688-07:00

October already? It seems impossible. Emily will be SEVEN on the 16th. That is incredible! How many times have we been told she wouldn't be with us long. Here she is, and THRIVING! :)Her seizures have been a ton better this week. She's had quite a few drop seizures when she's sitting on the floor. She just drops straight over, often times forward onto her face. It happens SO fast, in a

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-59577275729928269332010-10-01T14:01:00.000-07:002010-10-01T14:04:46.896-07:00

http://family.go.com/kids-costume-contest/funny-goblins-category/kissing-booth-34740/andhttp://family.go.com/kids-costume-contest/creative-creatures-category/splish-splash-bath-time-34734/You can vote for both, every 24 hours!!

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com7tag:blogger.com,1999:blog-7946092121614357964.post-57744637992579727962010-09-27T16:34:00.001-07:002010-09-27T16:47:24.426-07:00

I feel like it's been for-ev-er since I was caught up here! Emily ended up back in the hospital Friday morning. She woke up fine, and then started having some weird seizures we'd never seen before. She was gagging and retching and vomitting. She would scream and then stop, her eyes would roll up in her head, and then she would scream. Over and over. It was miserable. After about 15 minutes of

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com16tag:blogger.com,1999:blog-7946092121614357964.post-2908523396659238712010-09-25T08:18:00.000-07:002010-09-25T08:23:38.368-07:00

This will be quick because I am updating on my phone. I had to give Emily diastat and call 911 again on Friday morning. We were taken by ambulance back to the closest hospital and than transferred to children's hospital. We are stopping banzel and starting a new seizure med called mysoline. The dr's here called UCLA and they won't fit us in any sooner. So our goal is just to try and keep

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com21tag:blogger.com,1999:blog-7946092121614357964.post-26227990924119116292010-09-22T08:50:00.000-07:002010-09-22T08:57:24.003-07:00

For those of you who don't follow us on Facebook, Emily was hospitalized this weekend. She had seizures all day Saturday and then was okay Sunday morning. By Sunday afternoon she was back at it, ending with a 4+ minute tonic-clonic (Grand mal) seizure at 7pm. I gave her Diastat and watched her crashing. I called 911 and the ambulance took us to the local hospital. Turns out her Diastat

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com16tag:blogger.com,1999:blog-7946092121614357964.post-80366013931094085212010-09-17T16:19:00.000-07:002010-09-17T16:22:20.531-07:00

I just got a card and letter in the mail today, Emily is being granted a Wish! :) I am so excited, although I will be honest and say that it made me cry at first. Make-a-Wish is something you hear about and think "dying kids". Sorry, I know that's not PC but it's true. So then I read more and I know they talked to our pediatrician and Emily's intractable epilepsy is considered life

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com11tag:blogger.com,1999:blog-7946092121614357964.post-16063719028681871282010-09-16T12:58:00.000-07:002010-09-16T13:03:40.173-07:00

I can't believe we are STILL waiting for the results of the Ethylmalonic Encephalopathty test. I has been over a month and I am going crazy. They told the metabolic geneticist that it should be in by mid-September. Here we are, it's mid-September! Ugh ... I wish the wait was over. Emily had a rough morning, with a lot of small seizures. I told her (okay, so I was telling my husband more

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com8tag:blogger.com,1999:blog-7946092121614357964.post-59938691273187196012010-09-15T11:54:00.000-07:002010-09-15T11:56:20.423-07:00

The princess is doing great in school! One of my favorite things about her teacher is that she tries to send a picture to my cell phone every day. She photos Emily doing activities or just being cute. I love getting these texts! This is the picture I got yesterday. It had a message that said "She's happy today, and crawling a lot". :)

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-80585116449805444332010-09-13T08:54:00.000-07:002010-09-13T09:06:52.360-07:00

My (paternal) grandma turned 90 last week! We all went out on Saturday and took her to Sizzler, one of her favorite places. We stopped and picked up these giant balloons, which made for great photos. It was a lot of fun. Our kids have three great-grandmothers and no great-grandfathers. It's quite amazing to celebrate NINETY!! :)My grandma loves her "hot toddy" every afternoon. Her favorite

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-70361407587179468292010-09-11T09:12:00.001-07:002010-09-11T09:12:28.808-07:00

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com1tag:blogger.com,1999:blog-7946092121614357964.post-49366550038062391002010-09-10T19:53:00.001-07:002010-09-10T20:09:31.340-07:00

I think that most (if not all) parents of special needs kids will tell you that raising them is like a roller coaster ride. Sometimes the ups and downs are back to back and you want to get off the ride. Other times the ride is just cruising along like a train, and then suddenly you are dropped a million feet and you can't wait for it to even out. Before anyone gets worried, no - we didn't get the

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com14tag:blogger.com,1999:blog-7946092121614357964.post-50697381348438845402010-09-09T07:28:00.000-07:002010-09-09T07:33:38.086-07:00

Yesterday was the first day of fifth/second grade! We had a great morning, Emily woke up well. Jacob told me that the first day was "awesome. I love Fifth Grade". :) Emily came home tired and took a nap!I called the Metabolic office, the test results are not in yet. The genetic counselor called Baylor to check on it, and they told her it should be done by the middle of the month. They say

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com14tag:blogger.com,1999:blog-7946092121614357964.post-31297173146358308282010-09-07T19:23:00.000-07:002010-09-07T19:34:30.911-07:00

The kids go back to school tomorrow. As PTO President, I wish it was still summer! I have already put in many hours getting ready for the school year, including the kindergarten orientation this morning. Now I just need to finish getting their backpacks ready and go to bed early. Hopefully I will get some cute pictures in the morning. :) Emily has had a rough few mornings in a row, but this

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com10tag:blogger.com,1999:blog-7946092121614357964.post-64223502558242472432010-09-04T11:29:00.000-07:002010-09-04T11:33:11.015-07:00

Monday will mark FOUR WEEKS since we did the blood test for Ethylmalonic Encephalopathy. They told me it would take 3-4 weeks to get the results. I will be calling first thing Tuesday morning to see if they've heard anything. Please cross your fingers, pray, whatever it is you do ... this diagnosis would be devastating. I would MUCH prefer her to have Cornelia de Lange Syndrome!The kids start

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com12tag:blogger.com,1999:blog-7946092121614357964.post-58847687079938163112010-09-01T08:46:00.000-07:002010-09-01T08:52:13.919-07:00

I have been given the opportunity to try and get some ads on my blog, that would help us bring in a little bit of extra money. Since my husband is a week away from unemployed and looking desperately for a new job, any amount helps! This would let me be part of a great network called Hopeful Parents, and give me some ads to post on this blog that are relevant to having a kiddo with special needs

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com22tag:blogger.com,1999:blog-7946092121614357964.post-24967280421007373092010-08-31T10:08:00.000-07:002010-08-31T16:33:18.894-07:00

Yesterday I took Emily to Children's Hospital to visit sweet Ella who is in for chemo round three. Ella's mom Denise called me ahead of time and we coordinated their outfits. How cute are they, matching each other! :)Lacey, if you're reading this, I can't wait until we can get Emily, Ella, AND Makayla ALL in matching Minnie outfits for pictures! :)

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com17tag:blogger.com,1999:blog-7946092121614357964.post-79331841906546897392010-08-27T15:39:00.000-07:002010-08-27T15:40:32.141-07:00

She did awesome. :) The dentist pulled her loose teeth and cleaned her teeth really good. He did xrays and took impressions. He said she has NO cavities or decay, which is fabulous! We can't brush her teeth, she won't let us .. and she takes nothing by mouth, so this is great news! Thanks for thinking of Emily today.

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com6tag:blogger.com,1999:blog-7946092121614357964.post-76432669565364685402010-08-27T07:29:00.000-07:002010-08-27T07:32:23.674-07:00

Today we go to Children's Hospital so that Emily can get her teeth cleaned under general anesthesia. She is having xrays, a cleaning, and impressions made. The impressions are being made so that the dentist can make a bite guard that clips on to her back molars. She grinds her teeth like mad - called bruxism. She has worn down most of her teeth already. I am not at all convinced she is going

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com4tag:blogger.com,1999:blog-7946092121614357964.post-52098994166963420072010-08-25T20:33:00.001-07:002010-08-25T20:40:51.400-07:00

Both of these sweet girls were at Children's Hospital at the same time, so I went and visited both of them last week! I didn't get any pictures of Gracie, I feel bad! She was finishing e-stim and then getting breathing treatments and such while I was there. Poor thing, all she was signing was that she was done and wanted to get in the car and go home. It was SO good to finally meet Kristi and

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com9tag:blogger.com,1999:blog-7946092121614357964.post-39865936749101966202010-08-23T21:51:00.000-07:002010-08-23T21:52:33.313-07:00

I don't know what to do. Emily got the official denial letter in the mail today for her Sleep Safe bed. How am I supposed to keep my precious girl safe at night? I am just sad and angry. :(I will announce my giveaway winner tomorrow. Sorry for the delay, but I just want to go take a long shower and cry my eyes out.

ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.com15