February 2014 Update

So the past few years have been years of change in Amanda's life. She now lives in Burgaw on a 70 acre horse farm with her sister (Katie), mom (Susan), and her new step dad, (Ritner). Susan's parents also live at the farm. At the farm Amanda enjoys therapeutic horseback riding, spending time with her service dog ELLIE, driving her wheelchair and walking all over the place, and laughing like crazy. She continues to be a very happy, well adjusted child who absolutely loves life and lives every day to the fullest.She still loves the beach, absolutely goes crazy happy riding jet skis, enjoys riding the Polaris Ranger at the farm, and still loves her animals and her people. Amanda has done very well over the last two years. She is 9 years old, and will turn 10 in May. She has had some seizure cycles a couple times per year and has also been hospitalized for everything from a resistant staff infection, to pneumonia, to seizures but each time her tenacity, strength, sense of humor, and resilience shine through. Medically, her aneurysms have remained stable, her seizures come and go but have seemed to occur less frequently this year than last, she is growing like a weed, and she is doing great intellectually and physically. She loves to tease and laugh. Her verbal speech is still limited but she communicates quite effectively with pictures, yes/no questions, and signing. We are blessed to have this amazing little child in our lives as she makes all of us better people from having the privilege to be around her. I post a lot on Facebook about her updates but I will try to remember to post here more often. God Bless and thanks for checking in on our precious little angel!

Summer 2012 Update

I am THRILLED to report that we have had no seizures in the last 8 weeks, Praise God!!! While Amanda had a bit of a roller coaster spring as she gained lost and regained seizure control, these last two months seizure free have been amazing! It is such a gift to be able to relax and enjoy Amanda and her silly antics without the threat of seizures. During these two seizure free months, Amanda has also weaned totally off of Keppra and onto a drug called Banzel. The Keppra seemed to have lost its effectiveness after almost 6 years and the neurologist also felt that some of her behaviors (biting, pinching, etc) would lessen if we took her off Keppra. While we haven't seen a significant decrease in behaviors yet, she is working hard to have gentle hands etc. Amanda has also really taken off intellectually and physically. I think the VNS surgery in November plus her new meds have opened up a whole new world to her. Her tutor from last summer is working with her again this summer and she couldn't believe the change in Amanda in one year. Amanda can count, add, subtract, identify colors, animals, letters, certain words, etc. Amanda has wonderful math skills so her tutor is focusing more on reading comprehension over the summer. They have a great time together and Amanda truly loves her. Amanda also has a wonderful CAP worker who is as much a teacher as anyone. Traci is great with Amanda and they giggle most of the day as they work on writing the alphabet, reading stories, playing games etc. Amanda is working hard to walk independently. She is consistently walking anywhere from 5-11 steps independently without loosing her balance. She is a determined little girl (actually not so little anymore lol) and I am confident she will master walking in the next couple of years. It has been a good summer with lots of horse time, beach time, and R&R and we look forward to a few more weeks of fun before the excitement of school, therapies, and work come rushing back. I hope you and yours are having a great summer! God Bless!

Good News!!! Amanda doing great!!!!

So it has been almost 3 months since Amanda's VNS surgery and she is doing wonderfully! Usually the best results are seen 6 months or more after surgery but we are thrilled to report that Amanda is currently seizure free! Her last seizure was about 15 days ago and she has been doing great ever since. We are getting wonderful reports from her therapists, she is behaving super (she is sweet, attentive, loving and giving hugs and kisses and in a good mood almost all the time), she is making good progress toward walking, etc. All I can say is GOD IS GOOD! I know Amanda has had many wonderful prayer warriors sending up powerful prayers and they are working. We feel so tremendously blessed for her to be doing so well. Thank you so much to all of the wonderful people who remember her in their prayers. We are so appreciative!!! Hope your 2012 is going well!
Love,
Susan

P.S. Amanda gets her "wish" from Make-A-Wish the weekend of March 4th. Her wish was to kick her sister upstairs and make Katie's old room into a sensory room with a swing, ball pit, communication devices, musical instruments, etc. She is very excited. I will take lots of pictures when the room is complete.

P.P.S. She and ELLIE are still doing great together. The Paws4people 5K race and 1 mile fun walk will be Sunday April 1. We would love to see you there. If you or your business would like to help sponsor the race, please email me at sdivance@yahoo.com. You could have your name on a really cool t-shirt while supporting a wonderful organization.

Christmas 2011 Update

Amanda has been doing really well lately with seizure activity. She had a couple of blips after the flu shot where we had to intervene with meds but since that passed she has done pretty well. She had a high fever Christmas day but got through that pretty well and since then, the seizures have really declined.

Her VNS was adjusted on the 20th and we go back the 4th for another adjustment. She has handled the adjustments (where the doctor increases the voltage output) really well. Her neurologist is quite happy with her progress and is very optimistic that we will regain seizure control with the VNS. Already, the magnet intervention has stopped two seizures in progress where she was locked in a tonic state and we swiped the magnet and the seizure stopped. We also went to an amazing church before Christmas and 3 wonderful ladies prayed for Amanda. I firmly believe that prayer is the strongest medicine out there and I can already see the effects. I am confident that seizures are soon going to be a distant memory and rejoice in that concept.

We are very thankful that Amanda continues to do well and praise God for his loving mercy on her. It is so special to see her improving so much and our family receiving such good news during the season in which we celebrate Christ's birth. God is so good. Sometimes it can be frustrating when she wont sleep at night or takes a bite out of you, but then we are reminded of what God did for us and the frustration melts and the thankfulness replaces it.

Thanks for all the prayers for Amanda and our family. I hope that God blesses you and your families and that 2012 is a wonderful year for you all!

Susan

Getting smoother again

Amanda is doing pretty well again. She is averaging 2-3 small seizures a day now and we are hoping to see them go away altogether. Last week, she got the stomach bug and that caused an uptick in seizure activity but things seem to be settling down again. The neurology and neurosurgery appointments went well. Her incisions are almost completely healed up and she has tolerated an increase in the VNS settings quite well. It goes off automatically for 30 seconds of every 5 minutes and the it can be triggered to interrupt a seizure. When it is triggered by magnet, it goes off for 1 minute as the next higher setting. It continues to be an effective means of stopping seizure cycles. For whatever reason, she seems to throw 1 seizure each morning about 30-45 min after waking up. However, the VNS intervention seems to get the cycle stopped so that is good news.

The neurologist thought she was finally stable enough to get her flu shot so she got that on Tuesday and seems to be handling it well. She didn't spike a fever at all. Mentally, she seems to continue to be quite clear. Her eyes are straighter and she is answering questions faster and with more accuracy again. It is nice to have her back to her normal again, and maybe even more improved. Both the neurologist and neurosurgeon are optimistic that the good early results that we are seeing with the VNS will translate to good news in the long run. Maximum benefit from the VNS is typically seen somewhere between year 1 and 2. Amanda will go back to the neurologist every two weeks for the next few months for VNS adjustments, but she will not have to go back to the neurosurgeon until next October when we do her MRI and MRA to check the stability of her aneurysms.

We hope everyone is having a joyous Christmas season. It is hard to believe it is almost here. We still don't have our tree or decorations up but plan to work on that this week. I am done with my finals but Dan still has a few to go. Katie has one more week of school and then she is out for a few weeks. She continues to enjoy playing sports and riding horses. Currently, she is on two basketball teams and one volleyball team, so she is quite busy. She just got named co-captain of her school basketball team so she is excited about that. She made the B team and their first game is on Monday. Today she had a Halo Hoops game. Anyway... we are all doing well. We hope you and your families have a blessed Christmas season! We know we are so very blessed to have Amanda doing so much better. It is a true answer to prayer and we are very thankful! God Bless you and your families!

Love,
Susan

Very Thankful!!!!! Good news continues!!!!!!!!!!

Thrilled to tell you that Amanda continues to do very well. We go back to the neurosurgeon and neurologist on Monday for check-ups and probably some tinkering with the VNS settings. Even at its lowest level, this device has truly been an answer to prayer. I have my sweet little girl back and her seizure activity is down at least 95+%. Thank you all so much for all of the prayers!!!! God is good!!!

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!

10/29/11 Update

So this week has had its peaks and valleys. We went back up on meds because seizure control has not been great. She had a big seizure on Wed afternoon, as well as two smaller ones before that. She has been better since the med increase but is still not quite the kid we took to California. The storms coming through are not helping so we have also had to give Motrin a few times to combat migraines. Hopefully, this next week will be a little calmer on the weather side and it will allow us to put this most recent flare up back under control. On the flip side, she has been doing much better at walking independently! Today, she is having a good day. As I write this, she is scooching into the office to check out what I am doing and is cracking herself up. I think she may think she is sneaking up on me. Or she is looking forward to her favorite activity of pulling all the books off the bookshelf and ripping out the pages (we keep our important books on higher shelves.

ELLIE has been very patient and very attentive this week. She and Amanda have an amazing bond and she is always there for her. We couldn't have asked for a better service dog. She is like a little mother hen to Amanda most of the time.

We go see Amanda's neurologist on Friday 11/4, so we will get to ask a lot of questions then regarding flu shot, seizure meds, final UCLA report, etc. I will keep everyone posted. In the meantime, we are enjoying lots of snuggles and trusting in God's plan for her. We remain very optimistic that this cycle of seizures will go away and she will continue to do well for a very long time. Have a great weekend! God Bless!

Amanda walked 8 steps independently tonight

It seems as though the flurry of seizures over the past month or so have cleared out some cobwebs in Amanda's head. She walked 8 steps totally untouched tonight, as well as 6-7 steps several other times throughout the day. Go Amanda go! Here's to hoping those seizures stay away and that this little wonder girl continues to develop and improve. Her NC neurologist felt like it is a possibility that the seizures coming back after 6 years might just be some fluke caused by a "perfect storm" so-to-speak and that we might get control of them and not see them again for a while (hopefully never). Wouldn't that be a wonderful outcome? I know that is not the "typical" viewpoint of all the doctors but why not be optimistic :). God works miracles every day and Amanda has been one since before she was born, so let's choose to expect the best possible outcome for her. Love to all! Good night and God Bless!

Saturday 10/22/11 Update (The Outcome)

We have been back in Wilmington since Tuesday night and Amanda has been seizure free since our return!!!! She has been very happy, working hard in her therapies, and seems back to her normal self. Sorry it took me so long to post. I have had a nasty case of bronchitis and have been in bed quite a bit trying to shake it. Thankfully, my parents have been helping a lot with Amanda. Thankfully, Amanda is doing just great, is full of energy, and is thrilled to be back in Wilmington. So here is the update on the UCLA findings ...

It was clear when we were out there that the doctors seemed to hope the seizures were coming from the left (her disconnected side) so that they could be fixed with surgery. By coming from the right, there will be no surgical fixes. All the information we have so far is preliminary but we heard it from both neurology and the neurosurgeon so I doubt it will change much when we get the final results. We will know if the MRI yields anything significant at that point since the MRI results weren't in when we left. She will continue on with most of her current meds although we will be switching one from a shorter acting version to a longer acting version. The good news is that since we weaned meds in the hospital to induce seizures, I now know for a fact that her personality, intellect, etc are no different on meds versus off meds ... she is the same kid either way, so that is a blessing to know.

So several people have asked if the news is good or bad and not to sound trite but the best answer is probably neither; it is what it is. Had the seizures been from the left, we would have been looking at another brain surgery this fall in a child who already has two aneurysms and blew 8 iv's or iv attempts while we were in the hospital. While surgery could have yielded the outcome of a seizure free child with possibly no medicines, it would also have been risky. On the other hand, with the seizures coming from the right, surgery is not an option and we handle things as we have been over the last several years, with medicinces. We went out there because we had to know where they were coming from to give her the best possible outcome given the information. We have done that and we now know the game plan. I feel comfortable in the fact that we have done everything we can do and have left no stone unturned. I feel peace with that and I know God is in control.

Deep down, I feel like the outcome is truly a blessing, as I really wasn't looking forward to another brain surgery. I feel like it is God's way of saying that He doesn't need outside help to heal her, that He can do that just fine on His own. It makes me think of John 9:1-3 when the disciples ask who sinned to make the man blind and Jesus replies that he was made this way so that "the works of God could be displayed in him." I have seen God use Amanda in such amazing ways already and He loves her more than we can imagine. She is clearly living a "purpose filled life." So I optimistically look forward to the days, years, and decades ahead where we can see just how powerful God is and how He will continue to use her in glorious ways.

Earlier this week, I got a call from my friend Mark who met Amanda for the first time out in LA and he told me how he shared Amanda's picture and story with a girl struggling with addiction who he was driving to a rehab facility. The girl was really anxious when she got in the car and he said that the girl really settled down and started to relax and even laughed a bit after they talked about her situation and Amanda's. Even on the other side of the country, God is using her in amazing ways.

It is all good. After all, Romans 8:28 tells us, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." I believe that down to the last molecule of my being and feel so blessed that God has given me some sneak peeks over the years as to the brillian silver lining in what some see as a cloudy day ... from Ms. M and the inmates, to the EMT, to the security guard, to the animal lady, to the girl going to rehab .... it is all good. I am blessed to live this life and I am blessed to be the mom of two amazing girls.

May you all have a blessed day and live every second of it to the fullest!

Susan

Home Sweet Home

After an unorthodox 4:30 am discharge from the hospital (thanks to a creative nurse and doctor), we made our 7:30 am flight out of LAX through Charlotte and arrived back in Wilmington about 6:00 pm. Amanda did great on both flights (although some of the passengers in Charlotte were less than thrilled with her method of announcing her arrival LOL) and is happy to be home. We are going to enjoy some quiet family time tonight. Thanks for the prayers and support. It is good to be home! God Bless!

At LAX

Amanda ended up staying in the hospital unti 4:30 am this morning. She was really off due to the day of seizures followed by being anesthetized. She woke up feeling much better this morning, as did I. I have Dan's cold so I went to sleep at 7:30 last night. We are looking forward to getting back to NC and seeing all of our friends and family. My graduate classes also start tomorrow. Thanks for all of the love and support. I will post a more detailed blog post when I get home on what this all means for Amanda. I did see Dr Mathern yesterday and he confirmed that they will do a thorough review but that the seizures do appear to be coming from her right hemisphere, meaning they are coming from the good side that we did not remove. He was visibly disappointed when we discussed this and no one knows why they came back. What I do know is that Amanda is God's child and He will continue to use her in amazing and humbling ways. She may need to be on seizure meds for her whole life but that life still looks bright and will be filled with love, laughter, and good times. God Bless!

Preliminary Results

So after the many seizures yesterday, the EEG indicates on preliminary read that they are coming from the right side of Amanda's brain. This means that surgery is not a treatment option and that a medicinal approach will make the most sense. We gained a lot of information from our trip to UCLA. We now don't have to worry about having any regrets about not investigating further to see if something on the left had reconnected. We were informed of another medicine that may be helpful in treating her and we also know a lot more about the type of seizures she is having etc. I prayed when we came out here that there would be clarity in the evidence regarding the best treatment so that the evidence pointed clearly one way or the other and we seem to have gotten that. God is good all the time and I look forward to getting my precious Amanda back home to NC. Off to try to find a flight...... God Bless!

Whew... Seizures on EEG

So we have captured both her big seizures and the myoclonic seizures on EEG now. It has been a long evening but she is resting comfortably now and is responding pretty well to the desire rescue meds. The doctors will have plenty to look at on EEG. So now the prayers shift to getting the seizures to stop again. The big ones are stopped but she is still throwing myoclonic ones pretty regularly. I can't say it is ever not scary to see your child have a seizure so despite being exhausted, I dont think I will be sleeping anytime soon. Instead, I will watch over my sleeping angel while I try to decompress. She looks so peaceful when she sleeps. I think the plan is to reload her with Keppra to try to get all of the seizures stopped. We are awaiting a final decision from the neuro team on putting that plan into action. Thanks for the love and support. We are a lot closer to having some answers now. The MRI will be the final piece of the puzzle. I suspect we will be in the hospital a few more days in order to regain seizure control. Then, the plan will depend on their findings and recommendations. I will continue to keep the blog updated. Love to all. God Bless!
Susan

Sunday 10/16 Update

So, Amanda and I are still hanging out waiting for a seizure. That still sounds weird to me. At this point we are in it for the long haul. It sounds like it is safer for us to wait in the hospital until the seizure comes than to get frustrated and head back to NC. Evidently, it is very common for a hospital stay to be great seizure control. Amanda is not alone in failing to throw a seizure in the hospital despite having lots before coming in. The doctors indicated that we should expect to be here several more days because once the seizures come they will want to get good control of them again before getting on an airplane. Because the PET scan had several potential points of origin, the EEG remains highly important in the process.

Amanda has been pretty wild coming off meds and they have had to fix the EEG leads each of the last two days. She is pretty bored and ready to go. There are only so many entertaining things you can do in a hospital and after six days she is pretty done with the process. She and I have played just about every iPad app known to mankind. She also has some toys which she really enjoys launching off the bed. She also announces her presence regularly with her horror film worthy screams. I am fairly sure I will need a hearing aid when I am 80, especially if this continues LOL.

So not much news to report at this point. It is really just a waiting game where we won't have a lot of information and then all of the sudden we will get a lot of information once things start to happen. I do feel secure in fact that she is in the best place for her to get some help as they know her well and have all of the tools necessary to find out why the seizures came back and where they are coming from. The med wean also gives us a chance to evaluate some other medicine options for her if they determine the seizures are coming from her right side. While I should feel scared that there is a big seizure coming our way, the good Lord has out in my heart the peace that surpasses all understanding that He is in control and that Amanda is where she is supposed to be.

I will post again as I know more. God Bless!

Susan

The waiting game continues

The results of the PET scan are in but inconclusive so we are still waiting to find out where the seizures are coming from. There are multiple potential points of origin that show up on the PET so without capturing them on on EEG it is everyone's guess as to where they are coming from. The plan is to continue to wean Keppra and Diazapam until she throws something. She definitely has more neurological symptoms now with the wean but hasn't thrown a definitive seizure yet. Mostly I think we are just seeing withdrawal type symptoms and some increased electrical discharges that aren't normal but aren't a full blown seizure yet. I pray that when she does have one that it is small and easy to recover from. Everyone on our floor of the hospital is well aware of her presence. She has been quite noisy while here. She is also starting to run a low temperature so hopefully that goes away quickly. I will continue to keep this updated as we know more. God Bless!
Susan

Still waiting...

As weird as it is to say and think this, we are still waiting for a seizure. The doctors need for her to do one on EEG so that they can determine where they are coming from. Most of the last 7 years of my life have been spent hoping we wouldn't see another seizure so it is really strange to be waiting around hoping for one to happen. We have weaned diazepam back to the level she was at before she caught her cold and started having seizures and still nothing. She has played on the iPad most of day and we had visitors today too, a former student from UNLV and her son. It was so nice of them to stop by. Tuesday we were blessed to have lunch with another old friend from UNLV. It was great to catch up.

The game plan moving forward is to still try to catch a seizure on EEG and then do the MRI. If that all happens before our flight on Saturday, that would be very helpful. Otherwise, we will have to figure out how to proceed. Dan will definitely go home on Saturday but Amanda and I may need to stay a little longer. I will continue to keep everyone updated. I made the mistake of asking what was the longest they have had someone under 24 hour EEG trying to capture a seizure and the answer was 38 days... Yikes! They actually said it is pretty common for it to take a while but hopefully Amanda won't be anywhere near 38 days. We actually have had some really special mommy daughter time in the hospital. There are no distractions so we can just enjoy playing and snuggling most of the day. Dan has a nasty cold so he hasn't been around at all today. Katie is handling being in NC quite well. She has her first dance of the year tomorrow night so she is excited about that. Her volleyball team lost on Tuesday in the semi-finals od e tournament to the top rated team. They had a good season though and Katie really enjoyed all of it. Sh e has one more week of volleyball practice so the kids that are returning next year can have a good foundation together and then she will set her sights on basketball.

You can probably guess that Amanda is sleeping like a little angel right now. She will be up one more time tonight before she goes to sleep for good. She is happy that her IV stayed clear today so she didn't have to get stuck again. Yesterday they stuck her six times before they finally got a new IV in. By the time they finished she just ignored them and didn't even cry. She is an amazing kid and the love of our lives, as is her sister Katie. We are blessed with two wonderful girls. Thanks for keeping Amanca and our family in your prayers. We appreciate that very very much! May God Bless you and yours. Goodnight.
Susan

Amanda had her PET scan today and has been having an EEG since last night. The doctors are reducing her meds to see if they can induce some seizures so that they will we caught on EEG. Go figure that the seizures start up a month ago and we finally gain seizure control just in time for the EEG so now we have to start them up again. Hopefully she will have a couple so informational purposes and then we will get control quickly again. Once the EEG is complete, she will have an MRI. Those three pieces of the puzzle will allow the doctors to deternine where the seizures are coming from and how to treat them. I will continue to keep you posted as best as I can. God BlessB

A good day as tourists

So with as many times as we have been out here before, we have never ventured out as tourists beyond the Westwood area. We decided today that rather than wait around for the hospital stay, we would go on an adventure. After breakfast and a walk in Westwood this am where Amanda ate more than I did, we headed out to Hollywood. Let's just say that there are a lot of interesting people in Hollywood LOL. It was fun to walk around and see some of the famous sites and stars on the Walk of Fame but we quickly realized it was too crowded for our personal taste. We then headed to Rodeo Drive and walked around. It was much quieter there. From there, we decided to walk back to Westwood through a somewhat unconventional route. Along the way we got to see pretty fountains, parks and parts of Beverly Hills. The walk was the highlight of the day for me but Dan wasn't too thrilled with how many miles we walked today. If you add up our morning and afternoon walking adventures, we clocked at least 9 or 10 miles. Los Angeles definitely has some beautiful parts in it that we hadn't seen before. On prior trips we have seen Malibu, Santa Montica, etc but not the more touristy stuff. Amanda was a good sport most of the time (although I did have to carry her the last mile and a half since she was ready to get out of the stroller ... That was a good workout). She didn't have any seizures yesterday or today, Praise God! California is agreeing with her :). We plan to hang around Westwood tomorrow and the Tueday she will go into the hospital. We are very thankful that God blessed us with such a wonderful day together.

Arrived safely in LA

We just got to our room at Tiverton House. Amanda did great on the plane. Our plane from Charlotte to Los Angeles got delayed three hours due to a mechanical issue with the lavatories but everybody handled the delay well. Amanda did great on both flights. She was a bundle of energy at times but very well behaved. We had to give her Motrin once for a headache but handled the pressure changes pretty well overall. Now we have two days to walk around Westwood and get acclimated to West Coast time before her hospitalization for testing. Have a great night. We are going to hit the hay...

Here are some pictures that our friend Jenny Simpson of Jennifer Simpson Photography took of our family on Sunday. I posted them to Facebook but figured the blog users who don't use Facebook would like to see them as well. The UCLA adventure begins today. We have a calm peace about us that we are doing all we can do by getting Amanda out to the experts who helped us the first time. We can feel your prayers so thank you!!! She had two days with minimal seizure activity but had one about 9:15 last night. It will be good to get some answers. By this time next week, we should have a game plan. We know that "He who is in us in stronger than He who is in the world" and we are heading to UCLA with open, clear minds and a lot of hopefulness for Amanda's future. Have a blessed day! Love you!
Susan

Insurance Issues Settled; Headed West tomorrow

Amanda did well yesterday and the day before but she is a little rougher today. Yesterday afternoon we got a call that our insurance wasn't ready to approve our UCLA hopsitalization but after many phone calls and additional medical records sent, we just received approval a few minutes ago. Phew! I will post again when we arrive safely in LA. Thanks for the prayers and support! God Bless!

10/4 Update

So I thought we were going to get through a day with no seizures, but she had one at 8:22 pm. She only had one yesterday too (although she created a lot of excitement when she got silly eating and chocked on her food - but she is alright and that is what matters most). Despite her one myoclonic seizure today, she had a really good day. She never ceases to amaze me how great of an attitude she has and how much she enjoys life.

She and her CAP C worker, Tasha, were rocking out to kid's music tonight while I ran my 2 miles on the treadmill and she was dancing on the floor :). It was really cute! Amanda just loves music and her favorite song is "She'll Be Coming Round the Mountain." She also loves to play hide and go seek and to snuggle whenever possible. We spent time a lot of time tonight playing, snuggling and eating (she is a night eater lol) before she fell asleep in my lap. She is now sound asleep and looks like a little angel laying in bed.

We are tying down loose ends and getting ready for the trip to UCLA. We are confident that we are getting her the best possible help. The surgery six years ago gave us a gift of six great years that we wouldn't have had otherwise, so maybe this trip will give us an even better outcome. We know that "we can do all things through Christ who strengthens us" .... so we feel as prepared as we can be about the upcoming trip and what lies ahead. It is a little easier facing a known process rather than an unknown one and we should have some good answers by 10/14. I will keep people posted through the blog as we learn information at UCLA.

Thanks for all of the prayers and the support. God is good, all of the time and we know He loves Amanda dearly. Have a blessed day.
Susan

Monday 10/3 Update

Amanda had a decent day yesterday but has had a very good day so far today. Yesterday she threw two myoclonic seizures and one partial that we were able to get stopped before it went to a full. Today she has had a couple of myoclonics but she is happy and in excellent spirits. Just in case you want to see for yourself, this is a video that I took when I went home for lunch today. She is as silly as ever. She is definitely an inspiration because she remains very happy despite anything else going on in her life. Go Amanda! The blog won't post a link so you can see the video on youtube at http://www.youtube.com/watch?v=bUa6SbUQICY

Saturday 10/1 Update

So Amanda is still having 4-6 seizures a day but she continues to be the amazingly resilient child she always is. She is in good spirits and is actually quite funny. She teased Katie like crazy today telling me that she loved everybody but Katie and then admitting she was only saying "no" to the question "Do you love Katie" to pull her leg and that she actually does love her a lot :). Funny kid! She busted out laughing at Katie's reactions. We took her with to check out the horses today and she enjoyed being outside in the sun and cool weather. She wasn't a huge fan of the wind though.

Katie enjoyed riding April and seems to be bonding well with her now that she doesn't have MayFlower to ride. I am proud of how well Katie has adapted to the loss of May and how she rests in the comfort of happy memories of great times shared together rather than being overwhelmed with grief.

Amanda is tucked away in bed now and as I watch my sleeping angel rest so comfortably and reflect upon a good day spent together, I wanted to share a few thoughts.

1. Amanda is one of the most amazing gifts that God could have ever given us. She has taught all of us to live in the moment, enjoy God's creation, and be more than satisfied with the little joys in life that can be enormous if you just look for them ... an impish smile, true love ... true unconditional love, a new accomplishment, a snuggle sign, the giggle of a child, a belly laugh, a true friend, etc. She has taught me more about the important things in life than any other person on this earth. Amanda was wonderfully made and is a perfect reflection of God's awe inspiring creation. When I was pregnant with her, four different people came up to me (some who I was not even aware were Christians) and each gave me the same scripture. What are the chances of that? Each time, the scripture was Psalm 139: 13-14 which tells us "For it was you who formed my inward parts: you knit me together in my mother's womb. I praise you for I am fearfully and wonderfully made. Wonderful are your works that I know very well." She has touched so many lives in just 7.5 years, more than most of us will likely touch in my lifetime, and it has been a privilege to see how God can use what some see as imperfection in such a perfect way. We look forward to seeing how He choses to use her for the next 70 years :)

2. Even though none of us wanted to see her seizures come back, "we know that in all things God works for the good of those who love him, who have been called according to his purpose" so we know He will use the current situation for good. We are confident that God has already used her in wonderful ways and that He holds her in the palm of His hand and will continue to use her in wonderful ways. Luke 12:6-7 tells us, "Are not five sparrows sold for two pennies? Yet not one of them is forgotten in God's sight. But even the hairs of your head are all counted. Do not be afraid: your are of more value than many sparrows." We know Amanda and all of us are loved and valued by God and He knows what He is doing and we trust in His perfect plan. While we do not know God's thoughts for Isaiah 55:8-9 says "For my thoughts are not your thoughts, neither are your ways my ways,declares the LORD. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts", we know that this experience will used by God for good. My hope is that it will turn out to be a wonderful opportunity for Amanda... maybe they will be able to stop the seizures for good so that she can come off all meds, maybe she will start talking more and walking idependently if they can fix the spot that is triggering the seizures.... there are a lot of hopeful aspects to having experts evaluate her again.

3) We are so incredibly blessed in so many ways. We have wonderful family and friends who have been so supportive and helpful. It is humbling how many people have reached out with words of encouragement and offers of assistance. Thanks so much to all of you wonderful people! We are also blessed to have the support of our leaders at work. The administration at UNCW is and has always been tremendously supportive. We can feel the power of everyone's prayers as they lift up Amanda in prayer. Amanda is a tough as nails fighter with a work ethic second to none. She loves to work at her therapies and is thrilled when therapists show up to "play" with her (as she views it). Her spirit is incredible.

In closing, we had a good day today, a good day indeed. There is joy to be experienced in every day. Amanda finds a way to have fun every single day and she inspires us to do the same. Today was fun, full of love and laughter, and lived to the fullest. My hope is that we all have the same type of day tomorrow and the next ... filled with love and laughter and finding ourselves appreciative of God's amazing creation.
Love to all,
Susan

Today was a better day

Amanda is finishing up the day strong. No seizures so far. She has actually had a great day. Now if I can just pin down transport to UCLA without exposing an unvaccinated medically fragile kid to a bunch of viruses on a commercial plane. Corporate Angel Network (who flew her last time) only flies cancer patients now so that is out and the other places I checked on take financial need into consideration. It is more of an exposure issue than a financial issue for us. Anyone want to lend us a Gulfstream LOL? Maybe I will just take out stock in Clorox wipes and medical masks. We will probably head to LA on 10/9 and return on 10/15 unless they recommend otherwise. Thanks for the prayers and support. It is working because Amanda is a total imp today and full of giggles! Praise be to God!

UCLA Appointment on 10/11/2011

We just got word that UCLA can see Amanda on 10/11/2011. We will be fighting her seizures hard until that point. The appointment will last at least 2-3 days and hopefully they will be able to pinpoint where the seizures are coming from and how to combat them. We can do all things through Christ who strengthens us. That is the verse we are holding tight to right now, in addition to the verse "He who is in us in stronger than he who is in the world." God Bless!
Susan

Now to the hard news...

About two weeks ago, Amanda caught a cold. No one in the house was sick so we don't know where it came from. Illness is often a cause of a lower seizure threshold in people with epilespy. On Wednesday night, I saw her do something that I hadn't seen in six years (since before her functional hemi brain surgery) but I wasn't totally sure I saw it so I waited. Thursday we saw a couple more but they were subtle and we still weren't sure. Unfortunately, by Saturday morning, they were not so subtle so we contacted her neurologist who lined up an EEG for her on Monday in Raleigh.

The EEG confirmed that she was having myoclonic seizures ... they are not Infantile Spasms (like she had before surgery) but they appear to be related. So she is pumped up on medicines now while we await a call from UCLA in hopes of getting her out there quickly for a thorough evaluation. Her neurologist in NC said it was important to hit them aggressively to get them stopped. However, even on very high medicines, they continue to break through, so we will likely be adding more meds to try to gain control of them. We should have news sometime in the next few days as to when we will head west to UCLA.

It is possible that the left side (which was functionally removed/disconnected) has rewired a bit and that she may need another brain surgery. Or it is possible that we will find a medicine combination that will work to stop them. We will know more as time progresses and we are able to have her evaluated at UCLA on their high tech equipment. Sorry to not have better news to post.

We know Amanda is a fighter and we will all face this head-on with confidence that God has an amazing plan for our little angel. This child has been a tremendous gift to our entire family and has impacted so many lives already. We look forward to seeing how God will continue to use her to touch people moving forward. Your continued prayers and support are highly appreciated.

Susan

First the good news....

It is hard to believe it has been so long since I last posted. I do a fair amount on Facebook now but I need to get back to blogging. After my last post, we changed Amanda's diet (no preservatives, no dairy, no wheat) and she did great over the summer with only one really wacky day where she threw five back-to-back seizures/migraine cycles over about a 10 hour period. No one is really sure what they were and after we got them to stop, we didn't see anything else strange the rest of the summer. She worked with a great teacher this summer and really progressed in many ways. She made progress with crawling, walking, talking, counting, reading comprehension, addition, subtraction, swimming etc. It really was a great summer for her.

Birthday Girl

It is hard to believe Amanda is now 7 years old!! She had a great birthday. She is still having some on and off migraine issues but overall is doing much better. She has been giving lots of hugs and kisses lately so that has been fun. She is also progressing in many other areas. Enjoy the video and pictures :-)

Still doing well and gaining some weight back

Amanda is still doing quite well. We didn't make it to the neurologist last week because Nana and I both had Rotavirus and the idea of driving 6 hours round trip with a gastrointestinal illness was not appealing... so we head up to the neurologist tomorrow. That is probably better since it also gave Amanda another week to recover and gain some weight back. Her ice cream at every meal diet is working as she is now up to 36 lbs. Only 10 more to go :-). Since adding the blood pressure medicine Atenolol, her migraines have really not been a problem at all. She has had a great week and continues to show off her brilliance with addition and subtraction. She is 100% on addition and is pretty good at subtraction as well. I will post again after we meet with the neurologist. Have a blessed day!
Susan

Enjoying Being Home

Amanda got discharged from the hospital yesterday. She is enjoying being back at home with her family, pets, and toys. She is also enjoying eating ice cream multiple times a day as we try to get some weight back on her. She has been in a great mood both yesterday and today. She has played, walked, driven her power wheel chair, squealed, knocked down Lego towers and enjoyed her freedom from the hospital bed. She goes to the neurologist on Wednesday for a check up, so I will let you know how that goes. Have a blessed day.
Susan

March 2011 Update

So... we have had an active time in the last few weeks. After 11 months with no seizures, Amanda has had 4 in the last six weeks. She has also had an increasing number of headaches. After a seizure on Sunday March 6 and severe head pain on Monday March 7, we headed to the Duke ER to make sure there were no changes in her pressure or aneurysms. We remained in the hospital at Duke until Thursday March 10. During that time, a CT, MRI and MRA were performed and everything appeared stable as far as her shunt and aneurysms. The consensus on the severe head pain was that the episodes must be migraine related. A few weeks before, we had seen Dr Wooten and he thought Amanda had been fighting a migraine cycle over the past couple of months and he prescribed prednisone to try to break the cycle, which unfortunately it did not (it worked last year when we had a problem). So, in light of the Duke findings, he started her on a blood pressure medicine called Atenolol to fight the migraines. She started on that med on Thursday night and by Friday morning, she was a new kid. She had a great day Saturday, although she had one bout of minor diarrhea on Saturday night.

Sunday was a different story. By the time we called the ambulance, Amanda had gone diarrhea 15 times and was throwing up violently and we knew she would have no ability to keep her seizure meds down in that condition. She was taken to NHRM in Wilmington and treated first in the ER and then admitted to the Children's Hospital, where we subsequently found out that she had a virus called Rotavirus, as well as a parasitic infection called Giardia. Both of these are likely to be "unintended gifts" from her stay at Duke Children's Hospital. There is no way to tell for sure but since she is hospital homebound schooling and doesn't get out much, that is the most likely theory. Unfortunately, so many medical personnel continue to "wash" their hands with hand sanitizer but hand sanitizer is not very effective against many stomach bug type germs.

Since Sunday, we have been at NHRM being treated for the Rotavirus and Giardia. On top of that, Katie got diagnosed with Type A flu on Monday and I (Susan) got diagnosed with Type A flu on Wednesday, despite the entire family receiving flu shots each year. Thankfully, Amanda has dodged the flu thus far. She is being treated with flagyl for the giardia and is making good progress. The bouts of diarrhea are becoming less frequent and she is off her IV and taking food and water orally.

Everything was going relatively smoothly until yesterday at about 6pm when she started having severe head pain again and her blood pressure rose to 145/58. The next 4 blood pressures were similar until she was given more atenolol and then the pressures starting going all over the place - up to the high 130s then down to the 40s and everything in between. She even had a blood pressure of 38/22 at one point. Over the next 18 hours, her blood pressures continued to jump all over the place and she continued to be very agitated. Her pulses jumped everywhere from the low 60s to over 115 as well. About noon today, her blood pressure and pulse stabilized and she has done well ever since. Tonight her blood pressure is holding a little low at 71/42 +/- so hopefully she will remain stable throughout the rest of the night. If so, we may be able to go home tomorrow.

So what does this all mean? We have talked to her neurologist and neurosurgeon and there are a couple of hypotheses. The blood pressure changes could be from the migraine activity or they could be from a problem with the tip of her shunt or from some residual tissue that was left in at the time of Amanda's hemispherectomy that is now typically taken out. The neurosurgeon from UCLA would like her to come out for an evaluation to see if they can isolate what is going on. If the changes are only migraine related, then maybe the Atenolol will be the fix. If the tip of the shunt is the culprit, she may need a shunt revision. If it is residual tissue, then a bunch more tests will need to be run and it is possible she would need another surgery. While that is not our favorite option, we would consider it if there were good odds that the problem would go away and that she might be able to reduce or eliminate her seizure meds. So, we will have some big decisions to make in the coming weeks as we learn more about what might be causing her headaches, increased seizure activity, and recent blood pressure fluctuations.

So why do I post this type of detail on her blog? It gives me one place to keep very important information regarding her health that is easily accessed and it also keeps people who love her updated and gets the word out to her wonderful prayer warriors. Thanks for all the prayers, love and support over the years. I will post again when we know more about God's most precious little angel, Amanda. May God be at the center of your lives and bless you and your families richly.

Susan

Wild Walker

Amanda is doing well! Here is a video her being wild in her walker. Hope you enjoy! Will post more soon!

Duke MRI

The Duke MRI showed that Amanda's aneurysms and shunt look stable. Praise God! It is such a relief to get good news. We will go back every summer for an MRI to check things and hopefully every summer we will walk away with good news. Our meeting with Dr Fuches, the neurosurgeon, went very well. He was funny and helpful and upbeat.

The MRI was quite the experience (6 hours, a BP of 50 something over 25 and a pulse of 45 and an inability to get fluids running to bring up the BP) but all is well that ends well. The funniest quote of the day came from the "new?" nurse who had trouble with IVs, machines, etc all day and told us how tired she was ... "Now don't let Amanda run or ride her bike when she gets home because she might still be groggy from the anesthesia." I guess it never occurred to her that kids who don't walk on their own might not run or ride a bike either. I didn't say anything but it did give me a chuckle.

It was a long day (left at 5:30 am, returned home at 8pm) but a great day given that things all looked stable. The radiologist hadn't read the scans yet but Dr Fuches felt like they looked the same so we are relieved.

ELLIE, Katie, Becca (Katie's friend) and I all went to the movies last night and had fun. Hopefully, next time Amanda can go too. Her appmt to start vaccines is Aug 6. She has a dental appmt tomorrow. As I write this entry, Amanda and ELLIE are sound asleep, all snuggled up together on the couch. It is very cute. Amanda and ELLIE continue to do very well together.

Our other news is that we are getting closer to building out our 44 acres in Burgaw. Eventually we would like to move the horses up there. A new friend in Wilmington is helping us to coordinate the process and it is exciting to see things moving along.

Amanda added two new skills this week. She can now put her head under water in the pool without choking and she can drink through a straw. She is very close to crawling on her own. She already scoots around the house but she seems to be really committed to mastering crawling. I barely have to touch her to balance her as she crawls. I guess we will be investing in some childproofing supplies soon, as well as a padded helmet.

We have enjoyed the month of July and had lots of fun times swimming in the pool, riding horses, and going to the beach... and we had some fun company as well.

I hope you and yours are enjoying your summer! Love ya and God Bless!
Susan

Summer 2010 Update

Amanda has been having a good summer for the most part. She really enjoys swimming, going to the beach, riding horses, etc. Last night we had a picnic on the beach and we swam in the afternoon and again after we got back from the beach. She is almost crawling independently now. I am hoping she will meet this milestone in the next month or so. She is walking great with ELLIE and loves the new harness.

The whole family, including ELLIE, went to a wedding in Florida in June. ELLIE behaved wonderfully, as we knew she would. Amanda on the otherhand was a bit boisterous but she had fun. The picture of us all dressed up is from the wedding. The wedding was outside so we were able to take Amanda safely (or so we thought). The wedding was lots of fun but we ended up getting a norovirus type illness and spent the last half of the trip quite ill. A bunch of the wedding guests got the illness and some ended up in the hospital. Our whole family (including my parents who did not attend the wedding) came down with it. The good news is that since Amanda go through the virus without throwing a major seizure, she is now cleared to try a vaccine. So, we will be meeting with the pediatrician soon to find out where and how to start the vaccine process.

Next Monday, July 26, Amanda goes in for her MRI to make sure her aneurysms and fistulae are still stable. Please keep her in your prayers. So far, they have remained stable so we pray that continues.

Amanda and ELLIE continue to make great progress together. The rest of the family is doing well too and enjoying the summer. I will post again after her MRI.

Susan

A nice resolution to the issue

We offered to meet with the Castle Hayne store owner to put this situation behind us and he agreed to do so on Thursday. It is nice to be moving toward the path of community healing and to have this situation behind us. http://www.wwaytv3.com/video/update_service_dog_owner_and_store_owner_meet_friendlier_terms/04

Looking forward to a wonderful Easter with family. God Bless.
Susan

Disappointing Day @ Wilmington (Castle Hayne) Store

As you all know, very rarely does Amanda go out in public and when she does, she wears a medical mask to protect her. This week is Katie's spring break so I took the morning off work so we could go get her a bit for her horse. Since the flu is dying down and we were not going to any crowded stores, we took Amanda and ELLIE with, so that Amanda could see a change of scenery. As we went in to the last store of the day (with Amanda masked and seated in her special needs stroller and ELLIE at her side), here is what ensued.... http://www.wwaytv3.com/node/21882

God gave us the privilege of having a wonderful child like Amanda for a reason, and we will protect her rights and the rights of other children like her as long as we are alive. The law already provides such protection but as evidenced by this situation, the law is not always followed or embraced.

May God Bless you all. Thanks for all of your continued support and prayers! Thank you God for the amazing gift of Amanda and her wonderful sister Katie!

Susan

March 2010

Sorry it has been a while since the last update. We started off the 2010 in great shape with Amanda making lots of progress. Amanda has learned to scoot now so she scoots all over the house, chasing the ball, ELLIE and Ringo, Katie, Dan and me. She really enjoys exploring and going to get all the toys she wants to play with. She is also progressing cognitively and is such a social and happy child. We are grateful to have her in our lives. Now that you know she is doing well, I will give you a flashback to a little incident that occurred earlier this year ...

In late January, I decided that I would take Katie and her friend Rebecca up to see snow about an hour and half north of Wilmington, since it hadn't snowed in Wilmington (if I had only known we would later get 5 inches in Wilmington, this trip would not have happened). Julie also went with us and we were all excited for a fun adventure. Little did we know how adventurous it would become.

We drove for about an hour and a half and were just into Sampson County when the snow got deep enough that we could actually play in it. We found an exit to pull off of to start our adventure. At that moment, within 20 seconds of pulling on to the exit, Amanda started screaming out of the blue and then threw a huge seizure and started throwing up everywhere. I stopped the car, ran around and got her in the recovery position, gave her Diastat and waited a few minutes for it to take effect. Katie and her friend stood out in the snow while Julie and I attended to Amanda, on an exit ramp, in the middle of nowhere. Unfortunately, the Diastat didn't stop the seizure so we called 911 and they sent an ambulance. Since we were so far from anything, it took the ambulance 20-25 minutes to get to us.

So Amanda and I got in the ambulance and headed for the ER while Julie, Katie, and Becca followed in my car. While in the ambulance, the EMTs attended to Amanda, started an IV, and attempted to get vitals. Because she was still seizing and had lots of tone, they couldn't even get the blood pressure cuff on. So, they administered IV diazapam and finally the seizure stopped. However, her breathing then became labored so they had to assist breathing all the way to the hospital. When we got there, a whole team was waiting for us. I have to interject here that the care on the ambulance and at the hospital was wonderful. Amanda stabilized and in a few hours, we were allowed to go home. (A completely random fact is that we saw a bobcat on the way home, so that was pretty neat).

So, we get home and think all is well but we start to notice that Amanda is just not herself, even after a few days pass. Eventually, after several more seizure-like experiences, incessant crying, tearing eyes, sensitivity to light, no playing, etc, we end up in Duke ER to get her shunt checked (once again great care) and finally end up back at her neurologist once we determine that the shunt is ok. After talking at length with Dr Wooten (who is wonderful!!!), he believes that driving up to the snow probably caused a migraine and that migraine lasted about 12 straight days before we were able to knock it out with increased meds. The meds however caused her intestines to "back up" so once we figured this out, we had to take the next two weeks doing intensive Miralax therapy to get things unclogged. Once that happened, our beautiful, wonderful, fun, happy, and mobile child returned. Praise God!

We are very thankful to have that silly little impish child back!!! She is a joy to be around and every second we get with her is a gift! She is back up to all of her antics and is just tons of fun again. So we are eagerly looking forward to a fun spring and summer and can't wait to see what new skills emerge as we move forward.

We hope all of you are doing well! Love ya!
Susan

P.S. The moral of the story is not to take your children to see snow. Wait for it to come to you, as it later did for us. Have a great day, week, month!

Merry Christmas 2009

We had a great Christmas this year. Amanda was really interested in opening presents, regardless of whether they were hers or not. She enjoyed ripping the paper off and would head for the tree any chance she got. We spent the first part of Christmas in NC and then headed to Florida for actual Christmas, so we got to celebrate the birth of Jesus in two places. The kids enjoyed getting to open presents at two places and stretch the experience over a little longer period. ELLIE enjoyed opening hers too. We have had fun in Florida with family and friends and have enjoyed swimming, golf (Dan), going for walks, going to Tampa Bay Downs, going to Homossassa Springs with Maxine to see manatees, and relaxing. It has been a fun trip. Hope you and yours had a wonderful Christmas!

Amanda Enjoying Her Trophies

Went to the CCHA Awards Banquet tonight. Amanda won two trophies for her participation this year in the Leadline and Therapeutic riding events. She was quite happy with her trophies. These pictures were taken when we brought them home to her since she wasn't able to go to the banquet due to flu season. Katie won an end of year championship and several reserve championship awards (she received a blanket, halter, and some money). Katie also got to debut her new curly hair (her first perm). And Ellie got to receive the plaque for the Paws4people sponsorship of some classes :-) It was a fun night.

Christmas Pictures

Amanda and Katie are both doing well. Amanda met her IEP walking goal this week! Yeah!! She went 8 minutes at 1.9 mph on the treadmill (the next day she did 10 minutes). Way to go Amanda! She also had a lot of fun taking Christmas pictures with her sister!