Catching up

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 doing this off and on she stopped, so we walked down to Jacob's school. He goes off to class and her bus picks her up there. While waiting for the bus, she started seizing again. We ran home and she kept doing it. By this time it was about 30 minutes since she had started, and so I gave Diastat.


We called 911, and the ambulance came. They took us back to the local hospital, where Emily woke up and was her normal self. They didn't feel comfortable discharging us since we had just started the Banzel and obviously don't have seizure control. They transported us by ambulance back to Children's Hospital where we spent the night again. The neurologist came in and said that we can change our Diastat protocal finally. If she seizures for 3 solid minutes, or clusters for more than 5 minutes, we are to give Diastat. If she continues to seize, we are to wait 15 minutes and then give another dose of Diastat while calling 911. We don't have to call after the first dose of Diastat unless her breathing gets funky.

We stopped the Banzel and started her on Mysoline. This is a derivative of phenobarbital. It's not an ideal drug, but they're just hoping it will control the grand mal seizures and clusters. They told me it might even cause more absence seizures than normal. They just want her to be stable at home until Oct 7th when we go to UCLA.

Today she had a GI appointment, and they want her to gain weight. She is a skinny little thing, and her BMI is just barely 10%. We are also upping her Nortriptaline to see if it will help her retching a bit more.

We saw ortho one day last week, in between hospital trips. Her hip dysplasia is the same as before, so we don't have to go back for a whole year to check on it! Her spine has developed a very slight scoliosis curve so we will monitor that as well.

Phew. I am tired. School has just started and as PTO President there is so much to get done. I am very lucky to have some amazing friends who have helped out at school and with taking care of Jacob in the afternoons for me. That's the update. It is hot as heck here, almost 100 degrees. Emily has had small seizures all day, but not clustered together. We have her in just a diaper under the ceiling fan. Heat + epilepsy = a seizing peanut.

I hope everyone is doing well. I feel so behind on everyone's lives, I need to get caught up!

Back in the hospital

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 Emily stable for 2 weeks until our appt date.

I'll update when I am home, hopefully we'll be discharged again today.

A quick update for now ....

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 AcuDials were set incorrectly! Instead of her normal dose when I administered it, she got DOUBLE the dose. By the time we got to the ER her blood pressure and pulse were tanked and she was non-responsive. It took 5 hours, a ton of fluids and some IV something (Dopamine perhaps?) to get her back to normal numbers. Then her blood sugar tanked and we had to follow that with D25 boluses. The blood sugar drop is her metabolic disorder acting up, because of the other drama.

She was finally stable enough around midnight to be transferred by ambulance to children's hospital. We did an EEG Monday which showed seizures in the left temporal region, same as her last EEG. Some stayed localized and some were spreading to generalized, although we didn't actually SEE any seizures during the test. They also saw slow spike waves, which officially got her diagnosed with Lennox Gaustat Syndrome. :( We are starting her on Banzel for this as soon as our pharmacy can get it ordered and compounded.

We don't get to UCLA Epilepsy Center until October 7th, so we are home and waiting anxiously. When we got home yesterday she was still a mess. Unable to hold her head up, or sit unsupported, and all she was doing was crying. Arching, stiffening, and whining. Looking back, I'm sure she was having small seizures all afternoon and evening. This morning she is sitting up unsupported and her head control is pretty decent. Thank goodness! We had orders that if she wasn't improved by this morning we were to take her back to the ER. In which case I was going to load us up and drive to UCLA ER just to get her in there quicker!

We have an ortho appointment today to do xrays of her hips and spine. Her hips seem to be bothering her a lot lately. We know she has mild hip dysplasia, so I'm nervous that it's gotten worse. And she has developed a slight curve in her spine, so we are getting a baseline xray to check for scoliosis.

This will be an interesting appointment, as ortho is notorious for making you wait 4 hours or so in the clinic! She is grumpy, not going to be happy to be back at the hospital, and unable to bear weight while standing. That will make for an interesting hip xray.

I will update more and post pictures, but I wanted to give a quick note!

Make a Wish

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 threatening. But still ... to know that this incredible organization is gifting MY child, means MY child is that fragile. It stings, I'll admit.

But it's awesome! I cannot wait to meet with her Wish Team. We have some ideas in mind already. :)

Still waiting ...

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 than I was really telling her) that she had another 2 minutes to knock it off. That if she continue to cluster, I was going to administer Diastat and call 911. Fortunately that did the trick. She had one more after my warning and that was it. I sent her to school with a warning note, and haven't heard from them. She must be okay, they call me every time she seizes.

My hubby started a new job, but the hours aren't fabulous. He is working most weekends and until late evening. So much for ever having family time! But ... it's a job, so I can't complain too much. Please pray/hope/cross your fingers that it works out and he starts bringing home some real income!

Hopefully my next post will include the lab results. And even more hopefully they will be negative/normal.

First picture from school

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". :)

A 90th Birthday Celebration!

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 is brandy in orange cappuchino. She likes having a variety of liquers and other alcohol around, so we all get her these little tiny bottles all the time. She has quite an assortment of alcohol on hand - more than I do! LOL I had to take pictures of her with all her booze. My dad even got her a plastic flask as a joke.



We ate, had cake and ice cream, sang Happy Birthday (which Emily hates, hence this picture!), and took lots of pictures.




This is my cousin with Grandma. I only have two cousins, and I don't ever see the other one (on purpose!).

This is my brother and his wife, with the kids.




I took pictures of each individual family with Grandma and her 90 balloons, so that I can make her a collage to hang on the wall! This is the only picture of me, as I am always behind the camera. As you can tell, Emily was DONE by this point. It was loud in there and she woke up super early that morning.


It's not that common to take your 90 year old Grandma out to lunch! Strangely enough, another party came in to the room we were in as we were cleaning up. They were there to celebrate THEIR grandmother turning 90 also! I let them borrow our 90 balloons for pictures of their grandmother. :)

I hate when the roller coaster goes downhill

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 results back yet.

I don't know what the deal is, but I have had a really emotional week concerning Emily. Nothing has happened, but I just am unsettled. I have had quite a few dreams that I won't even describe, but were horrible. And I keep having random thoughts that make me want to throw up. This morning as I was brushing my teeth this thought popped into my head - "After Emily passes away I will only have one kid to get up and ready for school. I can't imagine ever waking up and not thinking of her smile first thing. Those days will suck".

Her life is not a given. Her prognosis is unknown, as she is undiagnosed. Everyone is pretty confident that she has some sort of mitochondrial disorder besides her SCAD Deficiency. She has epilepsy and microcephaly and on and on. I have no reason to think she's going anywhere any time soon .... but for some reason these thoughts have popped up all week. Maybe it's related to a new school year? She's a second grader, and still going into the kindergarten class. And in that kindergarten class, she is smaller than a lot of them physically and behind every single one of them developmentally. Hell, she's behind any 9-12 month old developmentally. While she is awesome and I love everything about her, this is so hard sometimes. She has not made any developmental growth in the last two years. She seems stuck where she is, and it frustrates the hell out of me. I want so much for her ...

Then there's this new thing she's doing in the mornings. Her head wobbles around and shakes and she looks like a bobble head. I emailed our neurologist about it but he said he isn't concerned. I think because he referred us to UCLA Epilepsy Center, he is just waiting now for them to take over her care. I wish someone could get to the bottom of Emily! I am uploading video of her head this morning. I hope you can see what I'm talking about. It's really obvious in person. This lasts for about an hour every morning after she wakes up.




I just wish the damn results were back. If it's Ethylmalonic Encephalopathy ... I don't even know. I don't have words.

First Day Photos!

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 4 weeks, but they really mean 28 business days. So ... the wait continues.

Crappy seizure day today. First day of school tomorrow.

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 morning was the worst. It was the first time in a while that we saw physical seizures. She was so twitchy and shaky, and gagging and crying. She was sitting in her crib and her arms started jerking and she fell over. I sat her up and held her, but she was out of it for a few seconds. When it was over she cried and cried. :( This went on ALL morning. It was a long morning! When I finally decided to cave and give her Diastat, it stopped.

I hope she doesn't do it tomorrow morning. The first day of school! Please pray for a good morning. :)

Waiting Stinks

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 school on Wednesday. As PTO President I have already gone back a few days over the last two weeks, to get things ready to start. We have had a relaxing summer, I wish it wasn't over!

Tomorrow we are taking Jake to Walking With the Dinosaurs, while Emily stays home with her nurse. Jake is SO excited! :)

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