Wednesday, February 23, 2011

February is already half way over ..

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 his partner (who is fantastic), but we haven't been back to his office since then. I have quite a few questions and concerns for him, so I hope he's prepared for us!

Emily is having such insane rage episodes. She gets SO angry. She screeches and cries and pulls her hair or glasses or whelchair straps or whatever she can get her hands on. She scratches herself, or whoever's holding her, or whatever she can reach. She flings things if you try to give her a toy to distract her. And the worst is the biting. She bites constantly. If you try and soothe her during these episodes, you will get bitten. She has bitten my shoulder, my head, my ear, my hands, my arms, my thigh, even my boob. Ouch. :( The worst part is that she is biting herself now when she's in a rage. Both of her sweet little hands have tooth marks on them. :( I know that Keppra has rage as a known side affect, but she's been on Keppra for over a year. This problem has been getting worse and worse for the last few months, but the last two months have gotten unbearable. She's on Banzel also, and then Klonopin and Diastat as rescue meds for seizures. It's just out of control now, and I definitely am going to talk to the neurologist about it. She can't continue to bite us or herself!

Her seizures are about the same. The Banzel really has helped reduce the number of drop seizures she has, but she still has them daily. And her myoclonics and absense seizures are just as bad. This weekend was terrible, it was one seizure after another. There's no use going to the ER for this, as all they do is say "Well she is always going to have seizures". It's frustrating.

We are still waiting on authorization for her VNS placement. I know it's not a guarantee that it will help and I am not putting TOO much hope in it, so that we won't be too disappointed if it doesn't work. But I can't help but pray that it does slow the seizures down. They are slowly taking Emily from us.

In happier news, Emily got part of her Make a Wish already, and the rest is coming next week! She got her Sleep Safe Bed on Friday, and the EmFit monitor. It is SO nice to have a big, safe bed for her to be in at night. What a relief it is! We haven't playing with the EmFit monitor enough yet to know if it is awesome or not, but I'm excited about it. This weekend we will spend time figuring it out. The rest of her wish comes next Wednesday, with her formal presentation. They are bringing some storage solutions, decor, etc. It is SO fantastic! Thank you, Make a Wish!!

Emily has a lot of appointments coming up. The neuro is Monday, then metabolics on Thursday, and then next Friday she sees the geneticist. We haven't seen her in 4 years, and I am sure she will be no closer to getting us "the answer" to Emily's medical problems, but it's always good to see her ocassionally. Lastly, Jacob is finally getting into the neurologist for his facial tic/twitch. I am hopeful that the neuro will be able to help him.

It is a cold and rainy week here in So Cal, and I am ready for summer! (Then I will complain about the heat, and how it increases Emily's seizures, but at least we won't need to wear jackets every where we go!) I hope you all have a good weekend coming up. We are going to spend some time cleaning the house and organizing Emily's room with her new furniture!

Tuesday, February 15, 2011

Appointment update

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 and then we schedule the surgery. He said it should happen within 2-3 weeks. I am hoping it is sooner than later! I know that the VNS will be placed and left off, and then turned on later and adjusted for a while. I know that the process may take some time, but I am anxious to get it started.

Emily had a re-evaluation by her OT and PT today, and it really brought to light what these seizures are doing to her. They haven't worked with her for months, as she doesn't receive regular therapy right now. She hasn't met any goals for a year, and she doesn't cooperate enough to benefit from therapy. Add in the seizures and medical instability, and there's no use going to therapy right now. Anyway, they were doing her evaluation today and it was hard to sit through. There are some things she is doing great at. She is doing great at picking things up, touching different textures, etc. She is doing great at crawling to toys, unless it's a really bad seizure day. But her balance is much worse, her posture and stances are much worse. Her protective reflexes are now delayed by much more than they were. Little things that just show how much these stupid seizures are tearing her down. We have GOT to get them under control!

In better news, the Banzel she is on does seem to be helping. She is having many less atonic seizures than she was. She can go 30 minutes sometimes while sitting on the floor without a single atonic seizure! I know that doesn't sound long, but it was literally every 30 seconds for the last few weeks. Her myoclonics are a little better as well. We are seeing a new seizure type though, where her eyes kind of roll up and around in a circle, and her lip twitches. It is very subtle, and it happens in 2-3 seconds. She does it off and on all day though.

Her gagging and retching from last week is gone. I figured out the cause finally. We were trying to increase the calories in her overnight feed, as she has been slowly losing weight. When I went back to the lower calorie feed, she did fine. Tried upping it again, retching and gagging. So I have an email in to the dietician to let her know.

Her g-tube site has been angry lately, I am going to call the GI in the morning. She has always had a BEAUTIFUL g-tube site. Never needed gauze, never leaked, not had a granuloma since the very first few months of placement. Now it's crusty, red, weepy, and raw. I am ordering some Button Buddies to help, but I think it needs to be seen by the GI in the meantime.

In some GREAT news - her Sleep Safe Bed is being delivered on Thursday!! I don't know when it will be put together, as it is part of her Make-A-Wish. I have to call them in the morning and let them know it's scheduled for delivery, to find out if the rest of her bedroom make-over is ready. Then we can set a date for the wish to be fufilled. I am SOOO excited for her new bed!! :)

As always, I like to end this post with a FUN picture. This was taken Valentine's Day weekend at a birthday party we were invited to. I love this new shirt she's wearing from 3E Love!! If you haven't checked them out, you just have to!

Monday, February 14, 2011

VNS consult is today

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 asleep on the living room floor.

Please pray that the neurosurgeon can get her scheduled ASAP for the VNS. Even more, please pray that it will bring Emily some relief from these damn seizures!!

And just so you can see that Emily is still her smiling, amazing self in between these stupid seizures, here's a cute picture from yesterday morning. :)

Thursday, February 10, 2011

Remember that hole I said I retreat to?

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 crud all week. Today at school she was doing it and she stopped breathing each time. They freaked out (go figure - it seems we are all sort of addicted to breathing!). I picked her up and went straight to the ER. We got the all clear, but they said her sinuses are a wreck. We have winds here called "The Santa Anas" and they are warm and super strong. They spur everyone's allergies, and evidently Emily is not immune to this.

We are going on Monday afternoon for her VNS surgical consult finally at UCLA. I hope and pray that they can get us in for surgery quickly. I am going to ask about having a port placed at the same time.

If you haven't given up on me, thank you! I promise to try and post more often. I have pictures and things to catch up with on my blog and I will do it soon!!