Still doing well!

Amanda continues to do well. She is still having some seizures here and there but nothing too bad. The VNS seems to really help her, especially when you apply the magnet and it jumps up a level. She is having a few withdrawal issues as we switch from diazapam to clobazam but the seizures are much improved. The medicine switch will allow us to go to a more realistic medicine schedule again (3 per day) while adding some seizure control benefits as well. I am optimistic that the seizures will go away altogether as we tweak the settings on the VNS over the next few weeks and months. Very thankful for answered prayers and the blessing of having a much more stable child around! God is Good!!!!
Susan

Answered prayers :)

Had a lovely and relaxing Thanksgiving Day with the family and my parents. Amanda has been wild today. You would never guess she had surgery yesterday. Many prayers have been answered! Thank you! While she is still having some seizures, the magnet gives us a way to treat them without additional meds. She is also much more alert and she even had a dream last night in which she giggled in her sleep, something I haven't ever seen before. Thank you God for your answer to prayer! In fact, she is doing so well that Katie conned me into some midnight shopping tonight :)

Amanda is doing great post surgery! Praise God!

Amanda is doing fabulous tonight! She is eating well, playing hard, and seems totally back to normal! God has been so good to us and we are so thankful! We have lots to be thankful for this Thanksgiving!! Amanda never ceases to amaze us. She is tough as nails and hasn't required anything bigger than Motrin post-op. She has been scooting all over the hotel room getting into everything and showing no evidence that she is in any pain. She has had several seizures today but that is to be expected given most of the time it takes six months or longer to get to therapeutic levels with the VNS. She can definitely tell when it sends charges and we can tell too because it makes her voice sound funny, like she is riding down a bumpy road. We will head home in the morning if all continues to go as well as it has, which we definitely expect. Thanks for all of the prayers ands Happy Thanksgiving!

Surgery went well; In recovery now

Dr Grant said that surgery went really well with no complications. He attached the wire to the vagus nerve in the left side of her neck but actually ended up putting the device in the right chest to avoid going anywhere near her shunt. She has two incisions, one in her left lower neck and one in her right chest over toward her outside ribs. She is sound asleep in recovery now and will remain in recovery at least 4 hours until they deem her stable enough to go to the hotel. She has been pretty aggitated so far but gets better with each passing hour.

We also spent some time with the VNS rep and learned more about the device and how to use it. He had some nice success stories to share with us. It is fully turned on right now on the lowest setting. Amanda can definitely feel it though because she keeps yawning a bunch like something tickles in her throat. They said that those types of feelings typically go away after a few days as the body adjusts to the new sensations.

Thanks for all of the love, support, and prayers! God Bless you all!

Surgery started at 8:45

Amanda was in the OR and asleep by 8:45. I got to go back with her and hold her while she wore the magic mask and quietly drifted off to sleep. Now we wait and pray. We know God has a mighty plan for her and that he will keep her protected in the palm of His mighty hand while she sleeps. I will post again once we get an update. For those of you who know Amanda well you may find it funny to know that she got me back for the surgery today by biting through my hand this morning when I tried to keep her from spitting out her meds, which she had to take dry due to being NPO. She is a fighter :).

Pre-op Appointment went well; Surgery tomorrow

The appointment today for pre-op went well. They did vitals, took blood, explained the process for tomorrow, showed us around, took information for anesthesia, etc. It took a little over two hours. Brave little Amanda didn't even cry when they took blood.

She had quite a few seizures today (probably induced by the drive and the weather coming in for tomorrow) so it definitely reminded us of the importance of having the surgery. After such a good weekend, it was frustrating to see a lot of seizures again but we are definitely in the right place and doing the best thing we can for her. All of the doctors are really enthusiastic about the potential for the VNS to really help her so it is exciting to think about how much better her life could be without so many meds and without so many seizures. She seems to have gotten more used to having the seizures now so they don't seem to make her as irritable as they did when they first returned. Regardless, it will be nice when they go away completely again!

We got Boston Market for dinner and Amanda loved that! She is a huge fan of their sweet potatoes and ate like a wolf. Driving around in Durham and Chapel Hill (we went to Chapel Hill to get dinner) reminded me of how much I like living in a smaller town like Wilmington. It is very pretty up here with the rolling hills though.

So surgery is set for 8:45 am tomorrow and we have to report at 7 am to meet with anesthesiology etc. She is the first surgery of the day so there isn't much risk of delay. I will try to update the blog as soon as I can to let everyone know how she is doing. We will stay over at a hotel in Durham tomorrow night if she is doing as well as we expect. Otherwise she may have to spend the night in the hospital. The doctors would prefer not to have her in the hospital given her immune situation and lack of vaccines so we are optimistic that she will come out of surgery strong and be ready to head back to the hotel. We hope to be back in Wilmington in time to enjoy a lazy Thansgiving and mooch off of other people's hard work in the kitchen (thanks Mom!).

Lord I ask that You guide the hands of the surgeon, the anesthesiologist and nurses tomorrow and that you protect Amanda every step of the way and bless her abundantly through this surgery. We know that You are the Master Physician and we trust You Lord! Thank you for keeping our baby girl safe and please guide her recovery so that she defeats these seizures and heals quickly and without pain. Thank you Lord for granting us the priviledge to parent such an amazing child and thank you for all of your blessings!! Amen!!

Thank you to all of Amanda's wonderful prayer warriors out there! God Bless you all!

Packing up

Packing up for the trip to Duke tomorrow. Pre-op appointment at 1:00 and then surgery on Wednesday. Please keep Amanda in your prayers. We hope to be back sometime on Thanksgiving Day. Praise God that such wonderful technologies and doctors exist to give Amanda this chance at a better quality of life! God Bless!

Surgery date set for VNS Implant

The Duke neurosurgery appointment went well today. Dr Grant was quite impressive and has done over five hundred VNS implants. He indicated that VNS implants can be very helpful in kids like Amanda with a lot of background spikes in their EEGs. So it seems as though all the doctors are unanimous that this is the best option for Amanda and that the potential benefits outweigh the risks. So the surgery date is set for Wednesday November 23 (the day before Thanksgiving). We are excited to give her the opportunity to have a better quality of life with fewer seizures and less meds. It can also clear up that background noise and allow her to better concentrate etc. Another benefit of the VNS is that you can put a magnet up to it when the patient has a seizure and stop many of the seizures without having to administer seizure rescue meds. So we have a plan that shows some real promise and feel very comfortable that she is in good hands. We trust that this is the right plan for her. God has opened so many doors to make this all possible from canceled appointments allowing her to get in early to a surgery date open next week. We are very thankful for His love, blessings, and renewal of the hope in our spirits. We also appreciate the many prayer warriors that keep Amanda lifted up in prayer every day! Thank you all! God bless!

Neurology Appmt and Neurosurgery Appmt

We went back to the neurologist today. Amanda did not handle the flashing bright sunlight through the car well at all. She had about 25 seizures on the way there. The seizures don't last long but they take their toll on her mood etc. We came up with a good game plan with her neurologist that involves medicines and the VNS. He has a lot of hope for the VNS and we have a pre-surgery consult at Duke on Monday (they had a last minute cancellation and we jumped on it). Amanda's neurologist has seen many patients have a lot of improvement with the VNS so we are hopeful that Amanda will be another one who improves from it.

As far as meds go, Amanda started on her methylprednisone on Wednesday so hopefully we will start seeing some positive changes from that in the next day or two. I also sent in all of the paperwork to meet the FDA compassionate use standards to obtain Clobazam from Canada. It will be available in the US in 2012. Hopefully, we will get to start that drug next week if we can get things processed quickly. The Clobazam has an 18 hour life rather than a 6 hour life like the Diazapam that it will replace. That should allow us to go back to meds 3 x day total as opposed to having diazapam every 6 hours and the others every 8 hours (i.e., we give meds 6 times a day). The 1 am dose is the only one that is brutal in terms of sleep lol. More importantly, the longer life will mean that it will stay at stable levels longer in her bloodstream so hopefully it will be more effective. It has proven fairly helpful for kids with Amanda's type of seizures so we are optimistic it will help as well. We are weaning Topamax since that hasn't seemed to help her seizures much and that hopefully will give her system a little bit of a break from all of the high meds.

So, Amanda's journey continues. She continues to be a brave little girl and we cherish every minute we get with her, even the 1 am meds LOL. She remains pretty happy most of the time and has been showing off her crawling and walking skills. Last night, she took several steps independently and had pretty good balance. She impresses me by how hard she works to shake the cobwebs out and continue to make progress. She is the hardest working kid I have ever seen and continues to be an inspiration.

Thanks for all of the prayers. We know that the Master Physician has her in His mighty hands and we continue to trust in His perfect plan. May you and your families have a blessed weekend.

Also, here are some cute pictures of Amanda and Katie that a friend of mine, Jennifer Simpson took before we went to UCLA. Enjoy!

Susan

11/5-6 Update

So yesterday was one of the more intense days we have had. We started Amanda's new seizure med (Vimpat) and it is not the med for her, or at least not in combination with her other current meds. She got dizzy and lost her equilibrium and was unable to sit or walk for most of the day. It also made her extremely emotional, primarily on the agitated side. She would go through peaks of crazy happiness (about 10% of the time) followed by long times of extreme unhappiness with non-stop crying (about 80% of the time) with about 10% of the time being in between those two extremes. I felt horrible because I sat her on the floor for about 5 seconds to shift position on the couch and she crashed over sideways and smacked her head on the floor. Luckily, she quickly shook it off and seems no worse off for the experience.

Today is a MUCH better day. She has regained her equilibrium and can sit and skooch around without falling over. She is actively playing and is happy! It is so good to have our typically happy Amanda back! She has been building towers and knocking them over all day, and is giggling a lot. Throughout the day so far, she has gotten better and better. She also has a hollow leg and has already eaten a bowl of cereal, peace of toast, 2 eggs, hash browns, bacon, chips, OJ, and water and it is only noon. And yes, she is super skinny despite her less than low calorie diet (41 lbs at 7.5 years old). She is telling me she is hungry again so off to cook I go in a few.

We watched the VNS video last night and it seems like it might be a good option for her. It is kind of like a pace maker for the brain. The unit would go in her left chest and it would be connected to a wire that would wrap around her left vagus nerve in her neck. Thankfully it does not involve brain surgery, although it does involve surgery (about an hour - an hour and 15 minutes long). The unit is particularly effective for her type of seizures and many patients have had significant seizure improvement and lowering of meds. Basically, the way it works is that an electrical stimulus is sent up the vagus nerve into the brain at short intervals throughout the day. Those impulses keep the brain from creating the big electrical spikes that result in seizures. Most patients see some benefit although the degree of benefit varies. I will keep you posted on what we decide but right now the long range potential benefits of lower seizure meds and better seizure control sound appealing.

This is the day that the Lord has made. Let us rejoice and be glad in it. We are truly rejoicing that Amanda is having a good, happy day today with fewer seizures! Have a great Sunday! God Bless!
Susan

Final Results and Neurology Appointment

So UCLA gave us their final results and they were basically the same as the preliminary results. Surgery is not an option because the seizures are coming from her good hemisphere (the right side). The PET, MRI, and EEG validate eachother showing this finding.

Today we met with Amanda's NC neurologist. We are increasing her meds, adding a new one and hopefully removing one once we regain seizure control. We are also looking into a VNS (Vagus Nerve Stimulator), which has been found to be fairly helpful in treating patients with Amanda's type of seizures. If we decide to do this, it would be inserted by her Duke neurosurgeon. It is a longer run treatment as it takes time to get up to therapeutic levels of stimulation so we still need to hit the seizures hard in the short run to try to get them back under control. (Seizures are ranging from 3-4 a day to more than I can count). Her neurologist still felt like there is a lot of hope because she held steady for 6 years on most of her current meds and there are a lot of other meds and treatments out there that we haven't tried yet. It might just be a matter of changing some meds and possibly adding the VNS.

Amanda is hanging in there pretty well in typical Amanda fashion. She is totally wild and silly during the parts of the day that are not interrupted by seizure activity and is still into everything and pulling everyone's chains as much as possible. She did pretty well on the trip today despite rain, cool weather, and wind. We are blessed that she has such a generally happy disposition and sense of humor. She definitely lives life to the fullest and enjoys herself as much as possible. I think the favorite part of her day so far was the wrestling match surrounding changing her clothes. I am happy to report that while she definitely won several rounds, her clothes were eventually changed and I kept all of my teeth. Unfortunately, she did catch Nana with a sneak attack in the car and broke skin. As the late Chris Farley would have said, "That is going to leave a mark!" And it did...

Anyway, thanks for all the love, support and prayers. Amanda is a tough little girl and she is going to get through this bumpy part of the road to enjoy smoother travels in the future. I was frustrated yesterday and twice came across the verse "let not your heart be troubled" as I was reading. I know He is in control and I just have to trust and continue to have faith. He who is in her is stronger than he who is in the world. God Bless!