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