Emmalin went back last Tuesday, February 5th for her two week follow- up from her VNS surgery. Dr. Limbrick (Emmalin's neurosurgeon) said she was doing great. Emmalin's incisions were just a tiny bit red in a couple of places so they decided to put her on a 10 day antibiotic to be safe.
Today Emmalin is actually 3 weeks out from having surgery and she is doing wonderful!! She was able to start up therapies yesterday and she is doing really well with it all (she hadn't been to therapy since the first week of December). I think we are both glad to be getting back into the swing of things!!
God Is Good!
Emmalin Age: 7.5
Tuesday, February 12, 2013
Vagus Nerve Stimulator (VNS)
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| Jarrad, Me, and Emmalin before her surgery. |
January 23rd, 2013, Emmalin had a device called a Vagus Nerve Stimulator placed into her chest to try to help with some seizure control. This device was placed in Emmalin's upper left chest and then a wire was attached to the device. Then Dr. Limbrick (Emmalin's neurosurgeon) made an additional incision on her neck so he could "run" that wire up Emmalin's neck and attached to the Vagus Nerve.
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| The blue is actually pen marks, but this is what it looked like right after surgery. |
Although it has been expalined to us that the VNS will not help with any seizure activity going on in Emmalin's brain, the whole idea of this device is that it will act as a medication but without all the side effects. Of couse our first hope with this is that it will help control Emmalin's seizures better by making the seizures less frequent or by decreasing the lenght of each seizure (or both). If we can get what we (our epiliepsy specialist and me and Jarrad) would consider to be a "good handle" on Emmalin's seizures, our next hope would be to one day be able to get Emmalin off of some of her seizure medications. The VNS device responds to a certain type of magent and the device is "adjusted" by a type of wand (that's what they call it). They (the doctors) stick the wand in front of Emmalin's VNS device and from there they are able to adjust the settings to make the device "fire" a stronger current (for lack of a better term) or to adjust how long it will "fire" each time. At the moment Emmalin's device "fires" every 5 minutes for 30 seconds. As far as if the VNS has helped Emmalin so far... to be honest, Emmalin has been ALL OVER the place seizure-wise! Some days Emmalin will only have a couple seizures, a couple days she has had none (that I know of anyway), and other days she has still had SEVERAL!! The "bonus" thing with the VNS is that we were given a magnet (yes it's literally a magnet) for when Emmalin has seizures. The idea of the magnet is that you can swipe the magnet across the device in Emmalin's chest and it will make the VNS device "fire" an additional "round". This "round" will last for 1 minute (instead of 30 seconds). The idea behind swiping the magnet and making the VNS do an additional "fire" it will hopfully make she seziure not as intense or possibly even stop it altogether. It is still REALLY early on as far as being able to report "offical" results. The VNS can take up to 2 years to get up to reach it's "full potential" of what it may be able to do to help Emmalin and the quickest you can get it adjusted is every 2 weeks. So I'll keep you posted! :)
Isn't there a saying about "slow and steady wins the race"? In this instant, we hope that this is the case for Emmalin and her "win" will be fewer or NO SEIZURES! :)
Isn't there a saying about "slow and steady wins the race"? In this instant, we hope that this is the case for Emmalin and her "win" will be fewer or NO SEIZURES! :)
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| As you can see, it didn't keep Emmalin down for long, this is her literally a couple hours after surgery. |
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| Emmalin's biggest complaint was that we wouldn't let her roll around - lol |
I knew that I wouldn't be the best at describing all of this VNS info/lingo. So I went to the company's website that made the device (called Cyberonics) that Dr. Limbrink placed in Emmalin to try to see if I could find anything that would be worth posting on here. Although the pictures wouldn't post, I got a lot of the information. If you want to read more about the VNS, click on the word "Cyberonics" (below) and it will send you to that company's website. But just so you know, the device that it pictures is not the device that Emmalin had placed, Emmalin's is smaller.
Here's the info I got from the Cyberonics Website:
What is VNS Therapy for Refractory Epilepsy?
VNS Therapy is a non-drug treatment option that could help provide a new sense of control and independence to people living with seizure disorders. VNS Therapy is indicated for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures not controlled by medication or who experience intolerable side effects. More than 60,000 people worldwide have been treated with VNS Therapy for epilepsy.
How does the VNS work?
VNS Therapy is used in addition to medications to help improve seizure control. The vagus nerve is one of the primary communication pathways between the body and the brain. VNSTherapy is delivered by a device (generator) similar to a pacemaker and a thin, flexible wire (lead) that sends mild stimulation to the left vagus nerve. VNS Therapy is not a drug and, therefore, does not have the same side effects and does not interact with other medications. The vagus nerve delivers these periodic stimulations to the brain and helps to prevent electrical irregularities that cause seizures. Treatment is automatically delivered at regular intervals all day, every day so that you do not have to worry about missing a dose.
If I have VNS Therapy, will I still need to take medications?
VNS Therapy is an added treatment to your current medications. It is not a replacement for them. Some people in the clinical trials were able to reduce their medications over time. You and your physician will determine your ongoing treatment regimen. It is important to always follow your physician’s recommendations about your medications.
What does the procedure involve?
VNS Therapy is not brain surgery. VNS Therapy involves a minimally invasive procedure, which is typically performed under general anesthesia by a surgeon. The procedure takes approximately 1 hour and patients usually go home the same day. Typically, two small incisions are made—one in a natural crease on the left side of the neck and one in the left chest area, below the collarbone. The generator is typically placed under the skin in the left chest area. A thin, flexible wire connects the generator to the left vagus nerve in the neck. The small scars from the two incisions typically fade over time and become minimally noticeable for many people. Another procedure is required to replace the generator once the battery is depleted. This procedure requires only one incision and usually takes less than an hour. The VNS Therapy procedure is completely reversible.
What is the function of the VNS Therapy Magnet?
The VNS Therapy magnet may provide additional benefits for some people, but it is not necessary to use it for your regular stimulation. By swiping the magnet over the generator when you feel a seizure coming on or during a seizure, you or your caregiver will be able to stop the seizure, shorten the seizure, decrease the intensity of the seizure, and improve the recovery period following the seizure. You can also fix or hold the magnet over the generator to temporarily stop stimulation during certain situations or activities when even mild side effects are troublesome, for example, public speaking, singing, exercising or other strenuous activity. The magnet can be applied by any person or caregiver trained in how to use it. If you experience troublesome side effects for an extended period of time, contact your physician.
What are the potential side effects of the VNS Therapy?
The most common side effects of VNS Therapy include temporary hoarseness/changes in voice tone, coughing, a tickling sensation in the throat, and shortness of breath. These side effects generally occur during stimulation periods and typically decrease over time.
Catch Up
I realize I haven't posted anything since Thanksgiving, but things were pretty hectic in December and January (I'm sure they were for some of you also).
To start off Emmalin was sick on and off from about Thanksgiving until about January 23rd. Then on that day, Emmalin had a surgery (I posted all about it in the post Vagus Nerve Stimulator - VNS), and then from that point we have been focusing on Emmalin's recovery and just getting back into the swing of things. Emmalin was originally supposed to have the VNS surgery on the 19th of December, but 5 days before she got a cold and a double ear infection. Surgery was then rescheduled for the 2nd of January, but starting the 27th of December Emmalin got another cold and an ear infection in her right ear. The difference this time was that by New Years Day (Jan. 1st, 2013) Emmalin's cold had turned into pneumonia in her right lung and at this point she had a double ear infection. So then surgery was rescheduled (again) for the 23rd of January (and she actually had it on that day). We had to wait a minimum of 3 weeks each time before we could reschedule the surgery. Between each of her scheduled surgery dates, we spent our time trying to keep Emmalin sealed in the house and focusing on getting her healthy and keeping her that way (but as you can see keeping her healthy was harder to do than we thought).
This pretty much gets you up to date as far as Emmalin goes, I am going to try not to wait so long until I post next time!
God Is Good!
To start off Emmalin was sick on and off from about Thanksgiving until about January 23rd. Then on that day, Emmalin had a surgery (I posted all about it in the post Vagus Nerve Stimulator - VNS), and then from that point we have been focusing on Emmalin's recovery and just getting back into the swing of things. Emmalin was originally supposed to have the VNS surgery on the 19th of December, but 5 days before she got a cold and a double ear infection. Surgery was then rescheduled for the 2nd of January, but starting the 27th of December Emmalin got another cold and an ear infection in her right ear. The difference this time was that by New Years Day (Jan. 1st, 2013) Emmalin's cold had turned into pneumonia in her right lung and at this point she had a double ear infection. So then surgery was rescheduled (again) for the 23rd of January (and she actually had it on that day). We had to wait a minimum of 3 weeks each time before we could reschedule the surgery. Between each of her scheduled surgery dates, we spent our time trying to keep Emmalin sealed in the house and focusing on getting her healthy and keeping her that way (but as you can see keeping her healthy was harder to do than we thought).
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| Emmalin with some crazy hair hanging out in her swing waiting to get released from surgery so she could start backup therapies :) |
Anyway, so yesterday, February 11th, 2013 was officially Emmalin's 1st day back to therapies since the first week of December. She did WAY better than I had anticipated and I am excited to get back into our routine and for Emmalin to start making some progress again (therapy wise).
God Is Good!
Wednesday, November 21, 2012
Last Day of Hippotherapy For This Session
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| "Team Emmalin" at Dynamic Strides :) Me, Emmalin, Marge, Jackie, and Freckles the Horse |
Emmalin had her last day of hippotherapy (therapy on a horse) last Wednesday, November 14th. We are SO grateful for the opportunity to do hippotherapy!! Dynamic Strides is AMAZING and we look forward to getting back there and again in the spring!!
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| Emmalin working hard :) |
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| Emmalin worked best when riding backwards :) |
Happy Thanksgiving!!
Happy Thanksgiving to ALL!! We have SO many things to be thankful for!! We are SO grateful for every single person that has supported us in every single way (in prayer, encouraging words, donations...etc)!! God has blessed us with such amazing friends and family and I honestly don't know what we would do without you! Thank you, from the bottom of our hearts, for every single thing that you have done and continue to do to help our family!! We will NEVER be able to show how grateful we are and how much we appreciate all of your love and support!! God bless you all and we hope you have an AMAZING Thanksgiving!!
Another 24 Hour EEG
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| In the parking lot about to head into the hospital, (Emmalin's still asleep). |
This past Monday Emmalin and I headed back up to the St. Louis Children's Hospital so Emmalin could have another 24 hour EEG done (an EEG allows the doctors to see what seizure activity Emmalin has going on in her brain). Although Emmalin had a 24 hour EEG done in April of this year (right before her brain surgery), Emmalin had to get another one done before she can have the VNS (Vagus Nerve Stimulator) implanted. So up to St. Louis we went. They (the neuro doctors on the floor) said it was very interesting seeing Emmalin's EEG now verses back in April. They said you could definitely tell a difference since the corpus callosotomy (May 2nd of this year) and this is a good thing (I'm pretty sure anyway). The idea of the corpus callosotomy was to keep the seizures from "crossing over" to the other side of the brain (seizures start on one side and then will go to the other side, to where you would see seizure activity on both sides - well at least this is what was happening with Emmalin). The goal was that by having the brain surgery, it would keep the seizures from crossing over, which would hopefully make Emmalin's seizures less intense, or not as long, or not as frequent (or all the above).
So... although Emmalin did have some seizures just on the left side and some just on the right, Emmalin also had some seizures that "crossed over" to the other side. I asked if that was "normal" to see at this point (seizures starting to cross over this early - 6 months since her brain surgery), or if it was just Emmalin because her seizures are SO aggressive. The doctors didn't really answer the question...but I really don't think that it can be a good thing :( We will see Emmalin's neurologist, Dr. Weisenberg, again in a couple of weeks and we will have the opportunity to ask her more questions about the 24 hr EEG and see what she thinks about it all.  |
| Our view out our window - if you look really close you can see the Arch way in the distance :) |
Honestly, even though Emmalin didn't seem to have the results that we had hoped as far as seizure control goes, we have seen SO many improvements cognitively since the brain surgery (and to Jarrad and I, this is HUGE)!! This brain surgery allowed us to "see" a little more of Emmalin. It has allowed Emmalin the opportunity to find a way to show us that she understands more than what we thought and also allowed her the opportunity to find more of a "voice". We are SO grateful for all of these new things!
I would be lying if I said we weren't disappointed and even a little sad about the fact that some of her seizures are already finding ways to "cross over". But it is SUCH a big deal that Emmalin is finding ways to communicate with us and the world around her (in her own way of course). Yes, she still has a LONG way to go in this area, but we are at the beginning of it and that's all that matters!!
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| This is Emmalin refusing to open her eyes because she didn't like the stuff on her head. |
The perfect example of Emmalin starting to find her voice is this:
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| She eventually decided to open her eyes - lol |
Monday after they put all of the stuff of Emmalin's head and we were back in our room in the hospital, Emmalin started making these sounds (telling me she didnt' like it on her head and that she wanted it off), she started swinging her arms up around her head to try to knock whatever it was up there off (remember she's blind, so she had no idea what was on her head), and she just kept moving around like crazy trying to get away from it. While she was doing all of this, it was in NO WAY like she was in pain or in a panic, but she was making sure that I knew that she was annoyed by whatever it was that was on her head. It was like she was saying, "look mom, instead of just sitting there watching me try to get this off by myself, I'd appreciate a little help here". Of course I kept talking to her about what was on her head and why it was there, but she didn't care, she just wanted it off. Sassy and Stubborn, that's my "new" Emmalin (and I love it). Emmalin did eventually get the white "cap" off of her head (the "caps" were just gauze and medical tape - they put it on there to try to keep the kids hands out of the wires). Actually they came back in and put another cap on Emmalin but she managed to get that one off in around 5 minutes and that's why in most of the pictures you will just see Emmalin with crazy hair (you will see the "caps" in the pictures on the back of Em's head). Later that day Emmalin finally decided to accept defeat and stopped "complaining" about it and we were good for the rest of the night. But the next morning, when Emmalin woke up, she managed to find a way to get her hands tangled in the wires and got a couple of the things ripped off her head. I think she was pretty proud of herself! Once she figured it out, I couldn't keep her hands out of the wires, so they just came and took it all off (which is what Emmalin was trying to get someone to do in the first place).
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| And the cap is off! |
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| Side View |
As crazy as this sounds, seeing/hearing Emmalin as she was complaining to me probably doesn't seem like a big deal, but it was a HUGE deal!! You see, in all the other EEG's that Emmalin has had done (and believe me she has had a lot of them), this is the FIRST TIME she has had an opinion about it or tried to do something about it. It was a HUGE moment!! I know most parents in that situation would have probably thought, great they don't like this and it's going to be a LONG 24 hours!!" I on the other hand, kept bragging to everyone that came into the room saying, "LOOK!! Emmalin is telling me she doesn't like that being on her head!! Isn't that exciting!!" I actually got a couple of looks like I was crazy (until I explained our situation). I was SO proud!! It was another victory for us! Something to celebrate!! And even though everything we were told this hospital stay wasn't "great news", we did have that victory and that's what I choose to focus on and (as I said earlier) to CELEBRATE!!
God is SO Good!!
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| Going HOME! |
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| Me and Emmalin |
Wednesday, October 31, 2012
Trick Or Treat - 2012
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| Our Beautiful Rapunzel (from Disney's Tangled) |
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| Hallie, Emmalin, Haden, and Hoyt |
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| Emmalin and Jarrad |
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| Trick or Treat!! |
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| Our Family :) |
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| Emmalin and Her Castle |
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| Me and Emmalin at Papa's House Eating Dinner Before Our "Big Night" |
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| The Red Button Had The Words "Trick or Treat" Recorded On It So Emmalin Could "Say" It like everyone else at each house. All we did is push the button and it said the phrase :) |
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| Emmalin, Me, and Grandma Ruth |
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| Brynn, Hallie, Jarrad, and Emmalin |
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| Brynn, Hoyt, Marin, Brody, Russ, and Jim |
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| Jessica, Grandma (Marilyn), and Hoyt |
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