Amanda I. Update

Christmas 2011 Update

2011-12-30T10:15:00.003-05:00

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

2011-12-10T21:38:00.002-05:00

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!!!!!!!!!!

2011-12-01T21:13:00.000-05:00

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!

2011-11-28T21:22:00.002-05:00

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 :)

2011-11-24T20:45:00.000-05:00

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!

2011-11-23T19:33:00.002-05:00

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

2011-11-23T13:21:00.002-05:00

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

2011-11-23T09:08:00.003-05:00

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

2011-11-22T17:25:00.002-05:00

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

2011-11-21T21:10:00.001-05:00

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

2011-11-14T20:14:00.003-05:00

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

2011-11-11T18:55:00.004-05:00

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

2011-11-06T12:09:00.002-05:00

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

2011-11-04T17:50:00.003-04:00

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

2011-10-29T09:47:00.002-04:00

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

2011-10-23T23:07:00.002-04:00

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)

2011-10-22T12:03:00.005-04:00

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

2011-10-18T19:46:00.002-04:00

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

2011-10-18T08:54:00.002-04:00

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

2011-10-17T16:44:00.002-04:00

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

2011-10-17T02:15:00.002-04:00

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

2011-10-16T15:23:00.003-04:00

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

2011-10-14T15:20:00.003-04:00

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...

2011-10-13T23:19:00.002-04:00

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

2011-10-12T13:39:00.002-04:00

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

2011-10-09T23:47:00.003-04:00

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

2011-10-09T01:09:00.002-04:00

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...

2011-10-08T07:28:00.002-04:00

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

2011-10-07T13:22:00.003-04:00

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

2011-10-04T22:46:00.002-04:00

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

2011-10-03T16:12:00.004-04:00

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

2011-10-01T22:59:00.003-04:00

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

2011-09-29T19:30:00.002-04:00

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

2011-09-28T16:19:00.003-04:00

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...

2011-09-28T11:31:00.003-04:00

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....

2011-09-28T11:27:00.002-04:00

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

2011-05-27T11:34:00.003-04:00

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

2011-03-29T09:14:00.002-04:00

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

2011-03-20T21:15:00.001-04:00

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

2011-03-18T22:07:00.006-04:00

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

2011-02-10T12:58:00.003-05:00

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

Duke MRI

2010-07-28T16:46:00.002-04:00

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

2010-07-20T13:30:00.004-04:00

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

2010-04-03T09:20:00.002-04:00

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

2010-03-30T07:52:00.002-04:00

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

2010-03-10T00:54:00.002-05:00

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

2009-12-26T20:53:00.010-05:00

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

2009-12-12T20:09:00.007-05:00

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

2009-12-10T13:07:00.002-05:00

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!

Nov 2009

2009-11-17T14:25:00.002-05:00

It is hard to believe it is November already. Yikes, how the time flies. It has been really busy this fall between school starting, Amanda's therapies picking back up, Dan's dad's passing, horse shows, putting in a pool, and just the general chaos that accompanies any family.

Amanda has been doing really well lately. She is adding back more sounds and making great progress toward walking. She can walk across the room with only a little support on her leg. She can walk miles holding onto your finger. She and ELLIE have been doing well walking together as well. ELLIE also helped her out last month when she had her first seizure of the year (exactly 14 days after her seasonal flu shot). ELLIE got her meds and brought them to me so that I could get the seizure stopped. It stopped and there was no need to take her to the ER so that was good news. We are now 10 days out from the first H1N1 vaccine and she seems to be doing really well so far. She is such a fun kid to be around -- full of life and the best snuggler in the world.

Katie is now sporting a bright pink cast on her right arm from an ice skating incident on Friday night. I guess the word is that she has a crack in her growth plate area but that it should heal well. It doesn't seem to be slowing her down too much and she is enjoying getting all of her friends to sign it. She is a pretty good sport about everything though. She continues to do really well in school, so that makes us proud. It is fun to see what an important year 5th grade is in terms of maturity. She is really growing up into a wonderful young lady.

Dan is doing pretty well. Both Dan and I keep pretty busy with work, the girls, etc. We are looking forward to some nice family time with my parents, Katie and Amanda and ELLIE over Thanksgiving break. We are so thankful for all of the wonderful people that God has placed in our lives. Hope you all have a blessed Thanksgiving.
Susan

A tough farewell to a wonderful man

2009-11-01T21:52:00.004-05:00

The world lost a tremendous, inspirational, and absolutely phenomenal person, educator, author, leader, businessman, and most importantly father, husband, and grandfather this week. He was truly an amazing person who touched many, many lives and loved his family deeply. Dan's dad passed away on Monday, Oct. 26. He will be sorely missed by all who knew him.

Belated Panama City Pictures

2009-08-21T23:43:00.007-04:00

Trip to Panama City Beach

2009-07-20T09:54:00.002-04:00

We got back from our trip to Panama City Beach, Florida late Saturday night. It was a great trip filled with beach time, family time, and relaxation. We spent the week in a rented beach home with Dan's sister's family. Amanda and Katie really enjoyed Hunter, Hailey and Hannah, as well as Jill and David. ELLIE went with and did great as well. She was a little wild the first time at the beach (since that is where we let her just be a dog at home) but she settled down nicely after she realized it wasn't playtime (dogs are not allowed on the beach in PCB so we had to have her vest on to have her with us). When nobody was looking though, we took off her vest and let her be silly in the sand and waves. The longer we were gone, the more settled in ELLIE became. She really is a super service dog!

Amanda and Katie loved the beach. Katie snorkled around finding shells while Amanda and I jumped and played in the waves. Since Amanda loves sensory stimulation, she really liked it when the white wash from the waves crashed against her -- lots of giggles. Every time we got up to walk, she would pull me toward the waves. She is definitely a beach bunny. The water there is so clear that on calm days, you can see your toes very clearly. It also made for good shell collecting. In addition to a lot of cool shells, we found several sharks teeth. We also played with lots of hermit crabs.

On the last day, we rented a boat and went snorkling off shore. There we found more hermit crabs, starfish, sea urchins, sand dollars, sting rays, etc. We kept a few empty shells from that adventure but enjoyed seeing all the live stuff. Katie really enjoyed being on the boat and snorkling "in the middle of the ocean." The boat was a little too much for Amanda's senses (wind, rain, waves, kids, etc) so she went to sleep in Aunt Jill's arms while everyone else swam.

Today we get back to Amanda's normal summer therapy schedule. I think the vacation did everyone some good in the R&R department, but it is also good to be home. We have a little less than a month to go before school starts up again so soon we will be back in the classroom. This summer has been a wonderfully relaxing one though - much different than last summer with all the medical drama. We are so blessed that Amanda is doing so well and that we can enjoy relaxing time as a family. I will post pictures from the vacation as soon as I find the camera :-)

Susan

Amanda is talking more and learning more...

2009-06-25T12:58:00.003-04:00

Amanda has been adding back more language lately - go, mama, ohh, ma, home, more, on, etc. She also knows her colors... red, blue, green, yellow, purple, and animals ... horse, dog, pig, cow, duck, and body parts.... head, knee, belly, ear, hair, toes. She is riding at least 3-4 days per week and doing a lot of walking etc. She has also become quite the beach bunny. Hope everyone is having a great summer!

Therapeutic Riding Pics

2009-06-10T23:59:00.006-04:00

Great Neuro Appointment

2009-06-02T15:42:00.002-04:00

Amanda had a great appointment with Dr Wooten at Raleigh Neurology yesterday. He was really pleased with how active she has become. She was walking all over holding my hand, giving people "five" with both hands, and waving "bye-bye" to everyone when we left. He felt like we should keep with the current program since she was doing so well. It was a really good appointment. She really has been doing very well lately. Hope all is well at your house.
Susan
P.S. Thought you might like her bath time hairdo...

Birthday Pictures

2009-05-29T09:30:00.007-04:00

Amanda had a great 5th birthday. She had lots fun and enjoyed the party.

Happy Birthday Amanda!

2009-05-24T13:06:00.002-04:00

Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Amanda! Happy Birthday to you! And Many More.....! Amanda is 5 years old today. We thank God for the blessing of two wonderful girls! Have a great day!

Amanda May 2009 Update

2009-05-20T16:08:00.004-04:00

Amanda and Katie were in a horse show again last weekend. Both did a great job! Now that Amanda is back on a low dose of Topamax, she just loves riding again! Yeah!!! She has ridden 4 times in the last week. We hope to ride 4-5 times per week at a minimum all summer long. It really gets her trunk in shape, helps with her balance, and helps her walking. She also walked for 12 minutes (.26 miles) today on the treadmill. Go Amanda! She is making great progress. Not surprisingly, she is sleeping pretty hard right now during her nap. It is hard to believe that our little Amanda will be 5 in a few days. My how time flies. Hope everyone is well. We love you and thank you for your continued prayers and love.
Susan

A Nice Day

2009-05-01T21:57:00.003-04:00

We had a nice day today. Katie came home from school with good grades on her assignments. Amanda had some good therapies. Dan and I got some stuff done around the house. Then the girls and I went to the barn where Katie, Amanda, and I carted with Mini Cooper. We all had a lot of fun. We even got Rachel, Amanda's babysitter, to cart and she loved it. Amanda especially liked it when we hit a bump. She laughed every time and smiled the whole time. Have a great night.

Amanda Lost Her First Tooth

2009-04-29T08:59:00.000-04:00

Amanda lost her first tooth last night and is well on her way to losing a second. The tooth fairy gave her $3 for the tooth. She looks so cute with her missing tooth. She kept working at her tooth til she got it out. Now she sticks her tongue in the spot a lot. What a cutie! She is having a great week. Lots of walking and lots of silliness. She now walks just holding on to my fingers. Hope you all have a wonderful day!

Good News from Hopkins

2009-04-23T16:42:00.002-04:00

We just got word from Hopkins that Amanda's aneurysms are stable and do not need to be looked at again until next year - yippee! The neurosurgeon who evaluated them commented again that he felt they were of low risk of increasing in size because they are of a fusiform shape (widened blood vessel, not berry shaped) - double yippee! If they stay stable for another year or so, we may get to stretch out testing to every other year. Only one blood test came back slightly abnormal and we are awaiting the interpretation of that one. So, overall, very good news from Hopkins. Praise God!

Amanda has been doing wonderfully lately. She is making so much progress both physically and mentally. We are quite excited. Amanda went to the big paws4people race this weekend and walked all over the place. It was a wonderful event put on by UNCW students to raise money for paws4people. It was a big success. Thank you students! It was also wonderful to see all of our paws4people friends again.

Tomorrow Katie turns 10. Wow, double digits arrived really quickly! She is having a Rock Star party on Sunday at Sweet N Sassy with 9 of her closest friends. She also got straight "A"s on her report card this term. Way to go Katie!

All and all, things are going really well at the Ivancevich household these days. Amanda has not had another migraine since starting back on the Topamax and she has been so happy. Katie is growing like a weed and enjoying school. Flowers are blooming and the spring semester is almost over for Dan and me. We are looking forward to a relaxing and productive summer.

God Bless to All!

Susan

Getting Ready for Easter

2009-04-11T23:26:00.002-04:00

No final word from Hopkins this week so we will have to wait until next week. BTW, both Amanda and ELLIE did absolutely FABULOUS at Hopkins. Looking forward to tomorrow and the wonderful news Easter offers us all in the resurrection of Jesus! Happy Easter to all!!!!! God Bless!
Susan

Back from Hopkins

2009-04-08T10:53:00.002-04:00

We got back last night from Hopkins after a full day of tests and driving. Amanda had her detailed MRI study of her brain blood vessels and structure. On first pass, Dr Jordan indicated that her brain looked good and she could see increased myelinization showing she was laying down more pathways in her brain. She also thought the aneurysms appeared stable and unchanged from the prior studies which is wonderful news. They still have to do more precise measuring but so far, all looks good. Praise God! We should get final reports on both the blood and MRI later this week or sometime next week. It is nice to be home with what sounds to be good news!

Hopkins Visit and Horse Show

2009-04-06T17:44:00.006-04:00

We are at Hopkins now. Amanda had the hematology appointment today with Dr Keefer. What a wonderful guy! He was very thorough and helpful. He ordered more blood tests for Amanda to be sure we have comprehensively evaluated any clotting disorder possibilities. Amanda was so brave and didn't even cry when she had to get stuck twice to get all the blood collected. We should hear something about the results by the end of the week. His big question is whether blood vessel abnormalities led to the stroke in utero or the stroke in utero was caused by a clotting disorder which led to the blood vessel abnormalities. It is kind of the chicken and the egg question and it's answer has important ramifications.

Tomorrow Amanda has her MRI and appointment with Dr Jordan, the vascular neurologist. the MRI is at 9:00 and the other appt is at noon. Hopefully, we will head home in the afternoon after receiving good news that everything is stable. We are faithful that will be the result. I will post again tomorrow night or Wed morning.

Saturday was a fun day for both girls. Both Katie and Amanda showed May at the CCHA horse show on 4/4. Both did really well. The pictures show how much fun they had. If you want to see more pictures, you can go to my Facebook page and look under photos. After finishing up the horse show on Sat, we then spent the afternoon working the Azalea Festival booth for paws4people and then came home and packed so we could head to Baltimore on Sunday morning.

We hope all is well with all of you. If you ever want to see Amanda's horse video or new video with ELLIE, you can type in Amanda Ivancevich in Youtube and both will come up. The poster of the horse video spelled hippotherapy wrong but the video is still great. The video with ELLIE gives you a pretty good picture of how Amanda is doing these days from a physical standpoint.

Thanks for all the prayers. Until manana....
Susan

March 2009 Update

2009-03-31T10:07:00.004-04:00

I made a video of Amanda and ELLIE. It is available on YouTube at
http://www.youtube.com/watch?v=YULpKVzMN2Y

March has been a pretty good month for Amanda. She got through a cold without major issues. She is handling the wind and weather better (not so many migraines) now that she is back on a low dose of Topamax. She is starting to form some new words like kick and row. She is growing like a weed as well.

We head up to Johns Hopkins in early April for her detailed MRI to make sure everything discovered is staying stable in her head. Please keep Amanda in your prayers. We are faithful that all will be stable and that she will get a great report.

This weekend is Azalea Festival in Wilmington so paws4people will have a booth downtown to help raise awareness about service animals and to help raise some funds so that more kids like Amanda can get a service dog.

On April 19th, the inaugural See Spot Run 5k run and 1.5 mile fun walk will happen at Hugh Macrae Park in Wilmington to benefit paws4people and paws4vets in support of Wounded Warriors. Go to www.paws5k.webs.com for more information. We are excited about the event.

Katie is doing well in school, in horseback riding, in girls-on-the-run and on swimteam. She is growing like a weed as evidenced by her latest sneaker purchase (womens' size 9). I think her height is now trying to keep pace with her feet as she is definitely shooting up like a bean stalk. She continues to be a sweet and caring little girl. She is also starting her own business, Katie's Custom Saddle Cleaning. She has been distributing flyers to help recruit customers. We are very proud of her entrepreneurial spirit.

Hope all is well with you and your families.

God Bless,

Susan

January/February 2009 Update

2009-02-08T23:34:00.002-05:00

A lot has happened since the last post. We have a new President, a new year, a new medicine protocol, had snow twice in Wilmington (Katie and I even got to go sledding!) and have big new plans for the spring....

We finished the 2008 quietly after celebrating Nana & Papa's 50th Anniversary and getting through a few viruses without any major issues. We started the New Year pretty quietly as well, but things have been really busy at work and at home. January was a pretty quiet month but February was has been a bit wild. Katie spent the last 5 days at home with a fever of 102-104, but so far Amanda has been spared from anything too major. I think it is really good news that Amanda has had a few illnesses this year (thankfully not the fever one) and has gotten through them without any hospitalizations. We have had a few issues with vomiting, but thankfully everything has stopped with treatment. We are hoping this is a sign that she is growing up and getting stronger with respect to fighting things off.

Amanda has been making good progress with new skills in most areas this year. We just got her progress report and it showed a lot of improvement in many areas, particularly in physical therapy. She also has so much personality. Today, she was really good at driving her power wheelchair. She also enjoyed swinging in the warm weather and walking all over the place. She walks with someone just holding a hand or arm now. She is also just a ton of fun to be around. She is a kid who just loves to tease, laugh, and be silly. She is very appropriate in answering questions yes and no. We are now taking her orders for meals and this is serious business to her. If you give her something that she didn't order, she won't eat it. She is growing like a weed and it is back up to 33 lbs. It is hard to believe she is almost 5! She and ELLIE continue to absolutely love eachother. We couldn't have possibly imagined how wonderful ELLIE would be with her. We knew she was special, but the bond between Amanda and ELLIE is truly something to behold. They are completely in tune with eachother and do lots of loving on one another. ELLIE is so patient and gentle with Amanda and Amanda loves to pet and play with her.

We will be going back up to Hopkins in early April to do Amanda's detailed MRI study and hopefully hear the news that her aneurysms and fistulae are stable and unchanged. We are also trying to finally get her med change done so that she can be on a medicine that has fewer behavioral effects and may allow her speech to come back faster. We will keep you posted on those changes. It will take several months for the switch to take place.

Katie is doing well in school and is quite the little equestrian as well. She wants to start swimming or dance so we are looking into both of those as well. She earned all As again this period at school - way to go Katie. Private school is definitely a lot more homework intensive than what she was used to, but she is doing a great job with everything. She is now taking a manners class in school and the kids will have a luncheon and a dance (where they have to do the fox trot with a boy). She is excited but nervous about the latter. She is really going through a maturing phase right now and is quickly becoming a wonderful young lady. It is hard to believe she is almost 10! Time really flies!

We sadly found a new home for our favorite horse Bo, who had suffered back problems since July when he injured himself in the pasture. The prognosis of recovery was not good, but we were happy when everything worked out for him to go to a very nice lady who has good vet experience and vet connections and lots of experience working with chronically lame horses. She is doing pretty well at keeping him comfortable and happy and has even been able to ride him some. It was a tough decision but we felt she had better resources to care for him than we did. On a happier note, we found a lovely mare with a history of abuse who will hopefully be our horse for many years to come. She is a little rough around the edges because she doesn't quite trust people completely, but she has made tremendous progress in that area. She is amazingly well conformed and perfect in every other way. We are very excited about her. We will keep you posted as she continues to progress.

Things at work have been busy. I have helped place 34 interns in full-time, paid internships this year and am working at recruiting next year's class. It was a tight year given the economy so it has taken a lot of effort to get that many students placed, and there are still a few more I hope to place as well. In addition, I am teaching the graduate auditing classes, so they keep me busy. Dan is teaching a couple of intermediate accounting classes and a systems graduate class. He went to Arizona last month and is in Houston right now visiting his parents. We both still enjoy Wilmington and UNCW a lot.

We never got around to Christmas cards this year, so then we wanted to do New Years cards and they got put on the back burner for Valentines cards, but realistically I think we have a better shot at St Patricks cards -- or maybe I should just write next year's Christmas letter now so it can come out on time :-) Seriously though, we love you all and thank you so much for the love, support and prayers you send our way. Have a wonderful February.

Susan

Merry Christmas 2008!

2008-12-25T13:40:00.010-05:00

We had a wonderful Christmas morning. I hope you enjoy the pictures.... Also, be on the lookout for our New Year's cards (yes, we missed our Christmas deadline). We wish you and yours a very Merry Christmas and a blessed New Year!!!!!!

Katie's Horse Show Pictures

2008-12-20T14:27:00.006-05:00

Here are some pictures from the horse show a few weekends ago. Katie had a great time and rode really well on May. Lady also did really well with Rebecca and Jen riding her. It was a very fun time for all!

My How Time Flies When You Are Having Fun :-)

2008-12-12T17:27:00.003-05:00

Sorry for the gap in posts. First and foremost, all is well in NC. Amanda and ELLIE are doing great together and Katie, Dan and Susan are all doing well too! I keep waiting until I have a block of time so I can write about all the happenings and then that block of time never comes. So... I'll give you some bits and pieces now and then keep posting every couple days to add in what I forgot in this post....

1. Amanda and ELLIE are an amazing team. ELLIE is really motivating Amanda to walk, play, stand, etc. She treats Amanda like her own little puppy-- mothering over her all the time. She is very patient with Amanda and loves to be with her! Amanda reaches out and pets ELLIE all the time now. Amanda never gave Ringo half a glance but she LOVES ELLIE! It is really something to see. It is amazing how deeply they have both bonded.

2. Katie is rocking and rolling in school. She earned all As her first semester - yeah Katie!! She also has a singing part in the school Christmas pagent, so she is very excited about that. She is also participating in a program called Girls on the Run and she will run her first 5K in April.

3. Katie was in a horse show on her pony, May, last weekend. It was May's first show ever and they both did great! The earned a first, two seconds, a third, and a fourth and received a $75 check for winning reserve champion in their division. It was quite thrilling for Katie. I will post pictures soon (I have to pull them off the other computer). Katie is really becoming quite a nice little rider now and her pony is just precious.

3. Paws4people has been down a few times for Riverfest, meetings, etc and things are going well. Our local chapter is growing and their are great things happening at the national level as well. It has been wonderful to be associated with the organization.

4. Amanda is up to over 10 minutes of walking on the treadmill. I think she is the most fit person in the family. She has a 6 pack and long strong muscles everywhere. She is up to 34 pounds now and still growing like a weed. She is doing well at answering questions yes and no and following directions. She has a really silly kind of goofy Santa-like laugh now that we all get a kick out of. She is also learning to drive an electric wheel chair and she likes to drive at you and squeal. She gets a big laugh out of it. She also loves to tease and has a precious sense of humor.

5. We are excited about having some down time over Christmas. Katie gets out of school the 19th and then we celebrate Nana and Papa's 50th anniversary on the 20th. We were going to plan a big party but they just wanted it to be a small family get together. However, if you are going to be near Wilmington on the 20th, let me know as a few surprises are good :-). It is going to be a nice quiet Christmas at home this year.

We hope you and yours are all doing well. We love you all. Have a very Merry CHRISTmas!!! I will be better about posting again now that things are slowing down.

Susan

Amanda & ELLIE Playing Ball

2008-09-16T00:07:00.004-04:00

Thought you would like to see this video and picture of Amanda and ELLIE playing ball. They played for an hour tonight. Amanda probably threw the ball to ELLIE close to 80 times. The video was taken toward the end of the session. The picture was a little earlier. It is amazing to see how much progress Amanda is making these days. ELLIE is certainly playing an important role in that progress. Thank you paws4people!! It was a very fun evening seeing both of them play so nicely. Everybody was having fun. We can't wait to play again tomorrow night.

2008-09-15T17:58:00.005-04:00

We have had an eventful few weeks but nothing too crazy. As you can see from the pictures, Amanda and ELLIE are doing well together. Amanda and ELLIE seem to really enjoy each other’s company. Amanda is learning to walk next to ELLIE while holding on to the handle on her harness. She also loves to snuggle with ELLIE. ELLIE is doing really well with commands like “get meds, get phone, etc” and she even gets diapers (clean ones) when we do a diaper change. She has been a tremendous blessing to our whole family. She not only helps Amanda, but she loves and comforts everyone else as well. When Amanda had her “issue” last week, ELLIE provided great comfort to Katie while we were getting things checked out medically.

Amanda did all of her blood work for Johns Hopkins last Monday so we should be hearing something soon. We also talked with UCLA today and hope to have a phone consult regarding medicines, behavior, etc. Amanda has had a few bumps the last couple of weeks, first with a spider bite and next with another vomiting episode (that makes 4 in 4 months). We went to the neurologist on Friday to talk things through and we have decided to try a medicine change. He is not sure if the vomiting episodes are seizures or migraines but either way, they are becoming too frequent. Plus, there are other side effects of the Keppra that might be rectified with a medicine change. We are optimistic that her language will improve on the new medicine and that she will lose some of her desire to be aggressive or need to do self stimulation (e.g., pinching, biting, pulling hair, etc.). It is always both exciting and a little scary when we do medicine changes. We will keep you posted.

Katie has had a big couple of weeks. She has started 4-H again, is enjoying her new school, and her pony. She also had a big event on Saturday, when she got her ears pierced! This is a big step for Katie, who is not a big fan of blood or pain. She went to Merle Norman so that Ms Tharpe, her first grade assistant teacher could be the one to do the piercing. The whole family, including ELLIE and Nana and Papa (& Amanda in her mask) went with to watch the big event. She got both holes put in at the exact same time by two different people so that she wouldn’t have to do them one at a time. She picked some cute faux diamond studs that really look nice on her. We are all proud of her for overcoming her concerns and following through with the ear piercing. She was quite happy once it was all over and she had earrings. She is already planning which earrings she will wear once her trainers come out. She has a lot more homework this year than she did last year, but she is handling it well. She is making nice new friends and seems to enjoy her teachers. So far, we are very happy with the new school. In 4-H, she will be competing on a horse bowl team, and will be learning a lot about animals, plants, etc this year. This weekend, she will be volunteering at a local horse show in support of 4-H. She also continues to enjoy horseback riding. She took a lesson on Sunday and will probably be taking lessons at least once per week this year.

Things are finally slowing down for me and Dan. The beginning of the semester was busy but things are starting to slow down now. Thankfully, Dan’s parents made it through Hurricane Ike safely. They live just north of Houston. They do not have power yet, but their house made it through the Hurricane ok. We hope all is well with you and yours. God Bless!
Susan

All is well after TS Hannah

2008-09-06T10:44:00.002-04:00

We made it through Tropical Storm Hannah just fine. Amanda seemed unbothered by it all and the rest of the family, including ELLIE & Ringo slept peacefully with no reaction, although Amanda did find the need to wake up and play from 4 am until 6 am. Luckily, she went back to sleep around 6 and stayed asleep until 8. The only time the storm seemed bad at all was from about 3-3:30 am when the winds really picked up. They were really howling for about a half hour or so. The center passed about 20 miles to our south so we got the eastern eyewall (It wasn't bad given the tropical storm rather than hurricane status but we still had sustained winds probably around 60-70 mph with higher gusts). We have a tiny bit of debris in the yard (pine cones etc) and around town there are a few branches down but no major damage that I could see. The horses all made it through fine as well. Hope all is well with all of you. God Bless.
Susan

Settling In

2008-09-01T11:29:00.002-04:00

Things are going well here. We finally finished our busy two weeks of school and now we face a more normal schedule from here on out. We are all healthy again, except for Papa who still has "the cold" but he is on the tail end of it. Nana was the only one with a strong enough immune system to avoid the cold.

Amanda and ELLIE are doing well together. They seem to really enjoy each other's company. Amanda has been walking next to ELLIE holding on to her harness and giving her lots of pets. The rest of us are really enjoying ELLIE as well. She is the neatest dog ever!

Amanda has made lots of progress this week. She has learned to "show me your toes" and to drink out of a cup by herself (this works well in the bathtub as opposed to over the wood floors). She is much more aware of her surroundings and is quite the silly kid these days. She did the best ever at therapeutic riding yesterday. She rode Katie's pony, May, essentially all by herself yesterday. I had my hands near her in case she lost her balance, but didn't have to touch her much at all. She did fabulously. This week, we will do the second set of blood tests for the clotting issues. We had to wait until she got off the antibiotics from the ear infections before doing them. She has been off the meds for about 5 days now so the tests should be fine now.

Katie is enjoying her new school. She is in a private Christian school this year and seems to love it. She is working hard at her studies and enjoying her new study area - the Bible. She comes home and quotes Bible verses, which is pretty cool. She really likes her classmates and has already made some nice new friends. Her best friend, who lives next door, also goes there. They are in different classes but enjoy being together at lunch and recess. I think it will be a good experience for her. I also love the fact that uniforms are required. It makes it so much easier to get ready in the morning. She can wear Khaki pants, shorts, or a skirt and a blue, red, or white golf shirt.

We are all enjoying our new Wii Fit game. I am hoping it will be the impetus for a healthier lifestyle for all of us. It is so much fun that you don't even feel like you are exercising.

We are spending a quiet day at home prepping for classes, cleaning house and relaxing. We will go to the barn later and do some riding. I am anxious to see if Mandy does as well today as she did yesterday. I am also looking forward to watching Katie ride May. Those two just love each other. They are are perfect pair.

I hope you all have a happy Labor Day. God Bless.

Susan

2008-08-18T09:29:00.002-04:00

Things are going pretty well. ELLIE has settled in nicely and is quite fond of Amanda, and vice versa. Amanda has an ear infection and a cold so ELLIE has been extra attentive toward her. ELLIE likes to lay her head on Amanda's lap whenever possible and in the car, she puts her head right next to Amanda's head and "hugs" her. It is very sweet! ELLIE is doing well on all of her command drills like "get meds, light, sit, down, stay, shake, stand, turn, wave, get, here, closer, wait, give, hold, up, on, etc, etc." Amanda is already petting ELLIE when asked. Everyone agrees that Amanda is much more attentive and able to follow directions now than ever before. She waved bye-bye a bunch yesterday when asked. She was particularly enthusiastic at waving bye-bye to the doctor. As soon as Amanda feels better, we will begin working more and more each day with ELLIE. I think ELLIE will be a big motivator for Amanda.

School starts for me and Dan on Thursday so things are busy with planning our courses etc. Katie also starts Thursday and is quite excited about her new school. We have a lot of meetings and commitments this week and next, but things will start to calm down by September. Unfortunately, we all have the same cold Amanda has so that puts a little damper on things. At least we are all getting through it at once though.

Well, I had better get back to work. Have a great day!
God Bless!
Susan

ELLIE and Amanda Together at Last

2008-08-14T18:26:00.002-04:00

It has been a long summer with some real ups and downs but we are ending it on a wonderful up! ELLIE arrived Sunday and we spent all day Monday, Tuesday, and Wednesday doing transition training. We went all over town in restaurants, stores, etc and ELLIE did just great. It was really fun for us too since we hadn't eaten out much in Wilmington in the last 4 years. Kyria and Terry were wonderful (as always) in helping to train us to work with ELLIE. There is definitely a lot to think about. They left this morning to go back to VA so this was the first day ELLIE was here without their help.

ELLIE went to work with me today so that we can increase our bond. She did GREAT! Most of the people who came in my office today were not aware that she was sleeping under my desk :-) ELLIE will be with me just about all of the time for the next week and then will stay with me most of the time for the next month so that we can solidify our bond. Amanda has been petting her and giving her treats and bonding as well. They enjoy their time together. We will wait until the bonds are strong before we include ELLIE in Amanda's therapies. Kyria and Terry will be back in October to help work with Amanda's therapists. I will post pictures when I get the time (this is our crazy busy couple of weeks with school starting etc).

Amanda is doing well. She was pretty silly while Terry and Kyria were here so that was nice. She is still bruised in her groin from the angiogram but it is healing up. She resumed her therapies today and had a good session with her speech therapist. We did find out that some of Amanda's blood tests did not get run due to a lab error so we will be doing some more blood work over the next couple of weeks. So far, only one blood test came back slightly abnormal. It deals with how well the body can break up a clot once it forms. The test was normal in the first test and slightly low in the second, so we will be doing a third to see if it is an issue or not. We will go back to Hopkins in 6 mos unless we need to meet with a hematologist sooner.

Other than that, Dan & I are just frantically getting ready for school to start. Hopefully we will have our syllabi complete before school starts :-). We hope you are all doing well. Thanks for all of your love, support and prayers!

God Bless!
Susan

Home Sweet Home :-)

2008-08-08T12:36:00.000-04:00

We got home last night. The visit at KKI was very informative and it gave us some good things to work on with Amanda. Today is a day of catching up on work, mail, sleep, etc. I will post more later, but I wanted to let everyone know we are home safe and sound. God Bless!
Susan

Blood Test, Jonas Brothers Concert, ELLIE, Etc

2008-08-06T22:23:00.003-04:00

Most of the blood tests are in and are negative. Only one remains. We should hear on that one soon. Then we will talk to the doctors and figure out if we do anything differently moving forward. We will keep you posted.

Katie and Dan just walked in from the Jonas Brothers Concert. They had a great time. Katie is still really keyed up and says the concert was just "Awesome!" She has a big crush on Nick so we have heard a lot about Nick tonight. Interestingly, Dan also said it was a great concert and that the Jonas Brothers are both very talented and very entertaining. That is quite the compliment coming from Dan, who is more of an old school rock guy. I have only heard the name Jonas Brothers about 412 times in the 20 minutes that they have been back (Dan =6, Katie =406). It is great that they had such a great time. I am glad Katie got to do this after giving up her tickets to the Raleigh concert. She is quite a kid!

We also heard this week that Kyria and Terry from paws4people foundation will be bringing ELLIE down to Wilmington Aug 10-14 to finish up our "boot camp" training with her. The training will cover all that we missed when we had to leave WV. They will come back in Sept to help work with Amanda's therapists so that they will be better trained to utilize ELLIE effectively in Amanda's therapies. We are quite excited that they will all be in Wilmington so soon after our return.

We head to KKI tomorrow for a 4-5 hour morning appointment. After that, we head for Wilmington. We hope to get part way tomorrow and then get into Wilmington on Friday. It will be nice to be home. Everyone is looking forward to sleeping in their own bed. We will keep you posted on the events in the days ahead.

Have a blessed day,

Susan

Still Hanging Out in Baltimore

2008-08-05T12:20:00.003-04:00

The blood draws are now over (4 more vials taken yesterday) and all that is left medically for this trip is our appointment at KKI on Thursday. We are blessed that they had an opening so soon. We will head home Thursday night or Friday. After 3 weeks in a standard hotel room, I think all will be happy to return to Wilmington.

Tomorrow is the big day for Katie - she and Dan are attending the Jonas Brothers Concert at the 1st Mariner Arena in Baltimore. It is directly across the street from our hotel so it couldn't be more convenient. She is quite excited.

The article in Wrightsville Beach magazine regarding Amanda, ELLIE, and paws4people and paws4prisons came out this week. The link to the article is http://www.wrightsvillebeachmagazine.com/article.asp?aid=403&iid=56&sud=27
The author, Skip Maloney, is such a nice and kind person. We look forward to keeping in touch with him in the future.

We don't have too much planned for today. Hopefully, we can catch up with Grace and her family later in the day. Grace has therapy at KKI this week and brought COLT with her for the first time. We had talked about getting together for dinner so hopefully that will all work out. Have a great day. God Bless!
Susan

A Mellow Weekend in Baltimore

2008-08-03T19:39:00.005-04:00

We spent the weekend running errands and trying to stay out of the hotel room as much as possible. Both days, we went to different places in the White Marsh area. Amanda wears a mask while we are out but she still really enjoys the change of scenery. Our next door neighbor last night was celebrating his bachelor party so we didn't have to worry about Amanda being too loud with her squealing. She has been amazingly happy the last several days. The video below should give you a taste of how silly she can be....

Dan and I have decided that nothing has really changed with her in the last month - we just know more information than we used to know. We are optimistic that everything that
was going to happen has already happened and that it is not unreasonable to expect that Amanda will continue to progress in her skills and that the problems found in her head will remain stable and never ever cause a problem. After all, she has had this stuff in her head since her surgery at 17 mos of age and she is now 4, and in the interim, she has passed kidney stones, been very active, laughed incessantly, and had lots of fun, all with no problems. It is quite a relief to not be facing major brain surgery right now and hopefully not ever. We have been told that the annual risk of rupture of all aneurysms is 1.3 percent and the shape of hers makes them less likely to rupture, so our odds are even better. Anyway, it has been nice to be able to stop and take a breath after a fairly intense 3 weeks.

We are very thankful for all that we have, including our two amazing girls. Katie is such a loving and understanding big sis. And Amanda is pure joy and innocence. The last few weeks have given us even more resolve to do everything in our power to make Amanda's life even more special. She is such a joy to be around and we have really enjoyed the 3 weeks of 24-7 time with the family.

Tomorrow we do another blood draw for Amanda and then Thursday we to the assessment at KKI. We should be headed for home on Thursday afternoon or Friday morning at the latest. Then we will spend the next few weeks catching up on work and getting ready for the new semester, which starts August 20. We will keep you posted on our happenings.

Have a blessed day!

Susan

A Nice Friday

2008-08-01T20:57:00.002-04:00

The blood draw went well today. Amanda is always a trooper with things like that. Her last blood draw will be Monday. We spent the late afternoon and early evening today visiting White March, just to get out of the hotel room for a while. However, I have to say that the managers and staff at the Days Inn on the Inner Harbor have bent over backward to make our stay comfortable. They are all tremendously nice people. We will definitely stay here each time we come to Hopkins or KKI.

Our plans have changed yet again. We called KKI today - they specialize in rehabilitation and therapy for kids with developmental and other disabilities. Their first appointment wasn't until January, but they called back this afternoon and had an inpatient discharge and can see Amanda on Thursday! So, we are staying in Baltimore until Thursday and will head home either Thursday afternoon or Friday.

It works out well because Katie had to give up her tickets to the Jonas Brothers in Raleigh when everything happened with Amanda. Katie was very understanding and didn't balk at all at giving away the tickets (we gave them to a friend from Wilmington). It just so happens that the Jonas Brothers will be in Baltimore on August 6th so Dan is taking Katie to that concert instead. It is a nice reward for a girl who is a wonderful big sister and is very patient with all the things that go on with her sister. I am very excited for her. She is a HUGE fan of the Jonas Brothers!

My parents have finally gotten hotel phobia so they are headed back to Wilmington tomorrow. They were wonderful to have stayed so long with us. They definitely earned parent of the year awards.

We will keep you posted on our happenings. Thanks for all the love, prayers and support. God Bless!

Susan

Pretty Good News

2008-07-31T18:15:00.003-04:00

We talked with Dr Jordan and Dr Gailloud today and the news is about as good as it could be given yesterday's findings. The aneurysms are deemed stable and their fusiform shape is less prone to rupture, so the game plan is to leave them alone and follow them with MRI studies every 6 months. As long as they don't start to grow, they can be left alone indefinitely.

The same is true with the fistulas. At present time, they are "benign", meaning they are not likely to cause problems in their current condition and can be left alone and tracked over time. They are not visible on an MRI so as long as they stay that way, they should be fine and not cause problems. We will also track them with an MRI and no visibility = good news.

So the game plan is to stick around until Monday so that Amanda can have blood drawn for clotting tests on both Friday and Monday. They have to take so much blood that they can't do it in one draw, so they split it up into two and left a few days in between for recovery. Her blood counts were excellent in the blood draw before the angiogram but she did lose blood after the angiogram when her artery bled so we are giving her a few days to recover from that before the first draw and in between draws just to be safe.

The doctors and nurses have been excellent to work with here and seem to be truly interested in helping Amanda. We are blessed to have such good doctors at each place we go. Dr Wooten from Raleigh Neurology has been wonderful and our team of doctors at UCLA are all wonderful as well.

We are also blessed to have wonderful family and friends like you. Thanks for thinking of us. We will continue to keep you updated. Our current plan is to head for Wilmington on Monday, as it will take a week or more for the results of the blood test to come in. And for the record, it is nearly impossible to keep a 4 year old still and quiet! Have a blessed day.

Susan

Mixed News

2008-07-31T11:04:00.003-04:00

The angiogram is done and the procedure itself went well. I have to admit though if you ever want a tough task, try to get a 4 year old to lay still for 6 hours and then to stay calm for another 48. The angiogram showed that Amanda has 2 aneurysms, the one they expected which was 5 mm and a very small 2 mm aneurysm. They are right next to each other, and are called fusiform or "psuedo aneurysms." The good news is that they have been there a few years and appear to be stable. The aneurysms are also a shape that has a lower rupture risk.

The doctors also found some "surprises" while doing the procedure. We knew something was up because the procedure took a lot longer than expected. They found several dural arteriovenous fistulas and dural sinus fistulas. On a scale of 1-4 with 4 being the worst, Amanda's were all toward the 1 range, so that was good news. The presence of these problems may indicate an underlying clotting disorder so we will likely be doing additional blood tests this week. We won't know for sure what the plan is until we hear again from the doctors. They meet today and discuss her case as a group. We will know more after they meet in terms of what this all means and what we do moving forward.

Sorry for the late posting. We got back after 11pm and then had to try to keep Amanda calm and still so the artery wouldn't reopen. She was absolutely wild so it was quite a task. We finally got her quiet sometime after 1am. We will let you know when we hear anything regarding the next steps.....

Thanks for the prayers. God Bless,
Susan

A Note From Dana

2008-07-30T21:49:00.002-04:00

Amanda came through the procedure fine today. She is still in recovery, but should be released late tonight.

Susan and Dan will be meeting with the team of doctors tomorrow to determine the next step. Thanks for your continuing prayers.

Dana

Angiogram Tomorrow

2008-07-29T16:07:00.002-04:00

We met with the pediatric vascular neurologist today. It went basically well but it is sometimes hard to hear what they have to say. The doctor was nice but it is still hard to discuss everything. She told us that aneurysms in kids are very rare. At Hopkins, they only see about 2 kids per year with aneurysms. So Amanda's case is super rare - to have a kid with a previous hemispherectomy that has an aneurysm. At UCLA, they told us she was the first kid to undergo a hemispherectomy and get an aneurysm.

The doctor also told us that the aneurysm she has looks like a widened blood vessel and not a cherry. The definitive test will be the angiogram tomorrow. Once they see the aneurysm up close, they will know a lot more of how to move forward. Amanda is super silly again today. At the moment, she is giggling uncontrollably as Nana is trying to get her to drink milk. She continues to be such an amazing, silly, and fun kid.

As I mentioned previously, the angiogram is at 1:00 tomorrow and should be finished by 2:30. We will then be in recovery until probably 8:30 or so. I will try to post something tomorrow night if possible.

Thanks so much for all the prayers for Amanda. Prayers are the strongest medicine.

God Bless,

Susan

A few thoughts :-)

2008-07-28T22:27:00.002-04:00

Last week, I had the opportunity to put some philosophical thoughts to paper when I wrote something for the paws4people graduation ceremony. I thought I would share an amended version of some of those thoughts here. As you know, the past 4 years have been a wild ride for us filled with 99% blessing and 1% stress. Some of the most important blessings have been:

1) Getting the privilege to be parents to our amazing little angel Amanda and her wonderful big sis Katie. Katie is such an amazing big sister to Amanda and Amanda just adores Katie. Amanda is such a truly wonderful, fun, tough, silly, loving and resilient kid who is tough as nails and sweet as sugar. Her innocent, pure, and radiant spirit shines through in all circumstances. We are so grateful to have 2 such wonderful children in our lives.

2) Gaining a much deeper understanding of the terms “unconditional love.” Both of our girls have taught us to understand in a deeper way the meaning of unconditional love. It is indescribable how much you can love a child and how much they can love you back. We have also grown closer as a family over the past several years. Unconditional love has also been demonstrated to us by all our family and friends who have supported us through thick and thin and by the inmates and personnel from paws4people who work day and night to improve the lives of kids like Amanda. My parents are a prime example of unconditional love, as they basically gave up their retirement to help us out with Amanda. Most recently, they packed up all of their belongings in Florida early to drive up to Morgantown and now Baltimore to be with us. They have basically been living with us in a hotel for the last two weeks. They deserve a medal for all they have done to help support our family and keep us functional. Thank you all for everything!

3) Getting to meet the many wonderful people that God has sent our way. Many of you have made an indelible mark on our lives. Everyone at the paws4people organization has become like family to us. Thank you so much Terry, Kyria, Heidi, Candace, Karen, Ashley, Ms Matel, all the inmates, etc for all you have done for Amanda, ELLIE, and our family. Thank you all for seeing Amanda for who she is and for seeing the ability and promise in her. Thank you for investing your time and energies to make Amanda’s life better. Thank you also to the many people who have supported Amanda, ELLIE, and our family over the past several years. You are all amazing and we sincerely appreciate all of your efforts and generosity.

4) Learning to enjoy every moment of every day and not to sweat the small stuff. Every second we get on this earth is a gift from our heavenly Father and we are truly grateful for every moment. We are grateful for the all of the wonderful experiences of the past and present and we eagerly look forward to those of the future.

5) Learning more about the meaning of life and our purpose here. Amanda has shown us that we are meant to serve other people and to help make their lives better, much like many of you have been doing for our family over the past several years. Often it is in serving others that you find yourself. Every member of our family is a better person for knowing Amanda and learning the lessons she has already taught us and will continue to teach us in the future.

While we are in our 1% stress mode at the moment, we are still tremendously blessed by so many things. We know there are many people around the country praying for our sweet, beautiful little girl. We feel added strength from all of those prayers. We are approaching the days ahead with the “peace that surpasses all understanding” and the comfort of knowing that God has a perfect plan for Amanda and our family. We have received some good news in the past few days and we are confident that Amanda will come through the procedures well and will continue to bless our family and the lives of others for years to come.

God Bless,
Susan

Pre-Op Appointment Went Fine

2008-07-28T17:02:00.002-04:00

The pre-op appointment went fine today. They just basically collected a bunch of information on Amanda and her medical history so that the anethesiologists would be well prepared to handle her case on Wednesday. We learned that the angiogram is scheduled for 1pm on Wednesday. The procedure should be finished by 2:30 and Amanda will be required to stay at least 6 hours after the procedure. We are praying that they find some good looking arteries when they go in there and that they won't have any need to do surgery.

We also have the appointment with the pediatric vascular neurologist tomorrow so we will let you know how that goes. We are especially looking forward to tomorrow evening as we will be getting a nice visit from Terry Henry from paws4people foundation. Thanks for the prayers and support.
Love ya.
Susan

A Quiet and Silly Sunday

2008-07-27T22:19:00.002-04:00

We had a quiet day today, aside from Amanda being her typical silly self. We went out to the suburbs of Baltimore to get groceries and get out of the hotel room for a while. We also hit the hotel pool briefly and played Uno Attack tonight as a family, a game the Meek family got us hooked on.

Amanda has been totally full of beans today. She has been soooooo happy! It has been wonderful. I think she is really enjoying having so much family around to play with and get attention from. I captured some of her silliness on video today so once I get the video processed (it is one of those disposable ones), I will post some of her antics to the blog. Her new throwing skill continues to progress. She can now throw up to 7 or 8 feet when she really gets the release right. She is quite humored by the sound of whatever she is throwing bouncing off tables, walls, etc.

It hit home a bit today that we really missed the service dog graduation. I wish we could have gone but Amanda's health comes first and no one wanted to risk driving up in the dark after the events of the last few weeks. From all accounts, graduation was quite an amazing event. We got to see great pictures from Kim Meek, Grace's mom, and also got to hear play by play accounts of all the wonderful events from Aunt Is, Carol Sullivan (who was also nice enough to drive over to Baltimore to see us yesterday) and Candace. We even got a very nice posting from the Coffindaffer family, the family that first fostered ELLIE and whose daughter was ELLIE's first trainer when she was in the service dog class at WVU. We hope to meet them in the future.

Anyway, we are so excited for Grace and COLT! You can see the pure joy on Grace's face in all the graduation pictures. Way to go Grace!

We are also eagerly looking forward to the day when ELLIE will come to live with us and be Amanda's best friend and helper. We are so grateful to the paws4people organization for all of their love, support, kindness, and friendship. Everyone from paws4people is totally amazing! They really have become like family and the gift they are giving Amanda will make such a tremendous difference in her life.

Tomorrow, we have the pre-op appointment at Johns Hopkins. At this appointment, we will get to talk with the anethesiology department and do any other testing needed prior to Amanda's Wednesday procedure. That appointment is at 12:15 and should last a couple of hours. Then on Tuesday, we meet with the pediatric vascular neurologist. I will post again after each of the appointments with an update.

Thanks for all the prayers and well wishes. We know Amanda is in good hands hear and we are optimistic that we will continue to get good news. Have a great day! God Bless!

Susan

Meeting with Dr Gailloud

2008-07-26T11:22:00.002-04:00

We met with Dr Gailloud yesterday afternoon. He is the doctor who will perform the angiogram on Amanda on Wednesday. Has performs this procedure 5 times per day, 1000 times per year, and has performed it on 350 children, including a 1 week old child yesterday. I think we are in good hands.

He told us that the aneurysm is present on her MRI scans all the way back to 2006, so it appears to be stable. We only found out about it in her latest MRI (2 weeks ago) but upon closer evaluation, it is present much earlier. He had several of his Hopkins colleagues look at all the MRIs as well and they could all see it in all the scans and felt it had not changed significantly from 2006. Their best theory is that it probably occurred in conjunction with her surgery in 2005.

She needs the angiogram so that they can see the shape and characteristics of the aneurysm in more detail. They will do a 3 dimensional CT combined with the angiogram so that they can understand exactly what it looks like and assess what needs to be done. He indicated that there was a decent chance that they will choose just to follow it closely every 6 months if it appears as stable from the inside as it does from the outside. The alternative is surgery but the risks of surgery may be higher than the risks of watching it, especially if it is stable and shaped in a way that corresponds to lower risks of rupture. It is nice to finally be getting some good news again. We meet with more doctors early next week, so we will keep you posted.

Today was graduation at the prison for the dogs COLT, ELLIE, and NIKKI. We were sad not to be able to attend but we are glad we are getting Amanda the care she needs. My aunt and uncle attended, as did our good friend Carol Sullivan. We are so happy that Grace and COLT are finally together and we are excited that Amanda and ELLIE will soon be together. Have a blessed day and thanks for the love, support and prayers.

Susan

July 24 Update

2008-07-24T12:41:00.002-04:00

We decided to have the aneurysm evaluated at Johns Hopkins since we were only 3 hours away in WV and everyone was getting pretty tense about being up there with Amanda. We had consulted their neurosurgery dept about the risks of waiting for evaluation, flying, etc and they took a real interest in her case. So we headed to Baltimore on Tuesday after numerous discussions with their doctor who specializes in this sort of thing. He has evaluated her records and gave us some good news in that it appears the aneurysm is fairly stable (i.e. not growing fast). He also helped to walk us through the events of last night when Amanda had another seizure. We spent 6 hours in the ER but Amanda is doing much better today. She is a little mellow but is otherwise acting ok.

In terms of where we head from here, the next step is a pre-op appointment on Monday the 28th and a procedure on Wednesday that will allow them to get a better view of the aneurysm. Of course, we are praying that it will either not really be an aneurysm or that it will be a minimally risky one that is easily addressed. Once they know what it looks like and what the shape is, they will know better what we are dealing with, what the risk of rupture is, and what the best course of action is. We will keep you all posted as things progress.

Unfortunately, we will be missing ELLIE's graduation this weekend, but we need to stay close to Johns Hopkins for Amanda's benefit. The paws4people organization has been wonderful to us. We had a great time with them last week and they have been tremendously supportive. One of the really neat things we learned during our trip to the prison last week is that the inmates have been praying hard for Amanda every day. There are some really special people in that group of inmates -- so caring and thoughtful! The other good news is that Amanda's current issues don't change anything with respect to ELLIE. The paws4people group told us we could get ELLIE once things calm down for us and we return to Wilmington. That definitely gives Amanda and the whole family something fun to look forward to.

We will continue to post frequently as we head through the next couple of weeks. We know God is in control of Amanda's situation and that he has a perfect plan for her life. We believe she will come through this even better and stronger than she started.

God Bless and thanks for the love and support!

Susan

Summer Update

2008-07-19T22:15:00.003-04:00

June was a wonderful month. We drove to Texas to visit Dan's family and had a wonderful time! We got to see a lot of relatives that we haven't seen in a while and had a fun time with all.

July brings wonderful news and disappointing news. The wonderful news is that we are in West Virgina working with Amanda's future service dog ELLIE. Graduation will be July 27 and then ELLIE comes to live with us. The disappointing news is that on Wednesday of this week, Amanda was diagnosed with an aneurysm. The aneurysm was found during a routine MRI for her annual UCLA appointment and confirmed with an MRA. Evidently, the aneurysm was there in last year's MRI as well but no one picked up on it. It has grown slightly in one year. Anyway, we are holding tight talking with neurosurgery trying to schedule additional tests. It sounds like we may be headed toward another surgery to correct the problem. We are faithful that this is just another bump in the road and that Amanda will come through it just fine. All the doctors told us to go ahead with the WV trip while we awaited scheduling and it has been a good decision. Working with ELLIE and our friends at paws4people foundation have been therapeutic for all of us. As always, we thank you all for your love, friendship, support, and PRAYERS! Thanks so much for all you do! We will keep you posted as we get more information on the events ahead. God Bless!

Susan

June 1, 2008

2008-06-01T13:03:00.003-04:00

Oh My! It is hard to believe it is already June! Where did May go? Things are very busy but going well. We now have Amanda down to 1/3 of the dose of Diazapam that she was once on. She continues to do well in her therapies and to be the true sweetheart she always is. May did bring illness to the household, but Amanda handled it pretty well. The week before Amanda got sick, Katie got a nasty cold with double ear infections that required antibiotics. Sure enough, one week later, Amanda caught the cold and also ended up with an ear infection and antibiotics. Of course, the one week that she was sick coincided with our planned trip to USP Hazelton to see the inmates and service dogs. Given her temperature was 100-102 degrees and she was not feeling well at all, we had to cancel the trip. We were all very disappointed. The good news is that we will get to see the inmates again this summer when we go up for boot camp and we will also get to see some of the paws4people gang the weekend of June 6 in Charlotte. The other absolutely fantastic news is that Amanda had a fever for several days and had absolutely no seizure activity - yippee!!! We are very optimistic that we are entering the stage of her life where seizures are a thing of the past.

Katie is almost out of school and is happy to have her End of Grade exams behind her. She is a little sad that this week works out to be her final week at Bellamy Elementary school, which has just been a wonderful school for her. Next year, she will be attending a Christian School about 5 minutes away. She is looking forward to her new adventures but will miss some of her special friends at Bellamy. Katie was also given the opportunity to attend not only the dress rehearsal but also the actual production of the Wizard of Oz. A local journalist writing a story on paws4people was kind enough to arrange this for Katie. She was thrilled and keeps talking about it! It is amazing how many wonderful people Amanda has brought into our lives.

Dan and I finished up our semester and are both out for the summer. We are working on research projects and preparing for the fall semester, while taking advantage of some welcomed rest and relaxation. We are also excited about seeing family and friends, and dogs and inmates during our travels this summer. It should be a great few months of fun family time.

God Bless!

Susan

Lots of Good Stuff to Talk About

2008-04-29T11:52:00.002-04:00

Wow! The last few weeks have been amazing!! Here is the run down on some of the events since the last posting…

Kyria and Heidi from paws4people foundation came down with COLT and ELLIE to Wilmington on Thursday April 10th in advance of Azalea Festival. We spent time going to the beach, riding horses, touring the UNCW campus, eating at South Beach Grill, cooking out, etc. Kyria and Heidi even rode our horse Bo double at one point. I’ll have to put up pictures when I get home.

Terry from paws4people came down on Friday the 11th and Candace came in from Charlotte. On Saturday and Sunday, we had a booth at Azalea Festival where we helped raise awareness about service dogs and raise money. Katie and her friend Tyler led the pack in the fundraising area. We appreciate all the people who came out to support Amanda, ELLIE and paws4people.

On Sunday, we also had the fundraiser at South Beach Grill. A special heartfelt thanks to South Beach Grill for their generosity. We were thrilled to hear that South Beach had a 60% increase in sales on Sunday for the fundraiser. Thanks so much to all of the wonderful people who cam out to support Amanda and ELLIE.

In conjunction with the South Beach Fundraiser WWAY TV3 in Wilmington did a great piece on ELLIE and Amanda. Amanda wasn’t feeling great due to a migraine but she held it together reasonably well. To see the video, you can go to http://www.wwaytv3.com/video/girls_best_friend/04

The Lumina News also did a very nice story on Amanda and paws4people. You can access it at http://www.luminanews.com/section.asp?sid=27&iid=109

This week, the UNCW paper ran a story on Amanda and paws4people. It can be accessed at http://media.www.theseahawk.org/media/paper287/sections/20080424News.html

This past week, Katie turned 9 years old. We took Mini Cooper to her elementary school on her birthday and he did great. Katie did a great job teaching all of her classmates about horses. Then, over the weekend, Katie had a slumber party with 6 special friends. They rode horses together, had cake, watched a movie, and had a great time.

paws4people is opening a Wilmington branch. If you or someone you know may be interested in helping out, please have them contact me at sdivance@yahoo.com

ELLIE graduates in July and will be living with us after that! We can’t wait!!! We will be learning all the ins and outs of dog training in “boot camp” for Amanda and ELLIE during the latter part of July. It is hard to believe we are getting so close. Amanda is so blessed!

We are blessed that Wrightsville Beach magazine will be running an in depth story on Amanda and ELLIE in their August issue. The journalist covering the story has offered a special treat to Amanda and Katie. He invited them to go to a dress rehearsal of the Wizard of Oz at Thalian Hall in Wilmington next week. The girls will absolutely love that! We are so excited!!

Katie and Amanda are doing well. Amanda has been very impressive intellectually lately. Last night, we asked her all sorts of questions and she answered every one of them correctly (with a nod yes or no). We were quite thrilled. She is full of energy and smiles these days. Katie got straight As again in school! Way to go Katie!!

I am sure there are more things that went on that I forgot to comment on but those should be a lot of the high points. I will post again soon! I hope all is well with you and your families! God Bless!
Susan

An Exciting Time for Us

2008-04-10T10:01:00.003-04:00

We have been busily preparing for Azalea Festival and the South Beach Fundraiser and the fun times are almost here. Amanda continues to do very well and is in a great mood. Her therapies this week have been great and she is just as silly as ever.

Today, Kyria and Heidi from Paws4people arrive with ELLIE and COLT. Tomorrow, Terry, Candace, and KOJAK come. We will be at Azalea Festival on Sat and Sunday and then do the fundraiser at South Beach Grill on Sunday. Two newspapers are running stories on Amanda and ELLIE, the Lumina News and the Seahawk (UNCW paper). We hope to be able to raise some nice funds to offset the costs of training ELLIE. ELLIE now knows how to "find Amanda" and "get the phone" and soon she will be able to "get meds". These new skills are in addition to the 100 commands she already knows. Exciting times!!! ELLIE will make such a difference in Amanda's life. We are SOOOOOOOO excited! It should be a great weekend.

If anyone is interested in donating to paws4people on Amanda's behalf, the website is

http://www.amanda.paws4people.org/

We will let you know how all of the events go and will post pictures next week. Until then, enjoy this picture of Amanda and ELLIE from January.....

God Bless!

Susan

A Great Last Week of March!

2008-03-31T14:57:00.003-04:00

The last week has been absolutely awesome! Amanda has been "on" all week. She has been silly, energetic, fully engaged, very interactive, and just tons of fun to be around. I think her system is finally getting used to being off Topamax, especially now that the migraine is gone. She certainly is one silly kid these days. We feel so blessed to have a giggling and happy little girl again. We are now weaning Diazapam and so far so good! It will be nice when we are down to one type of medicine. The Diazapam is addictive so it will take almost 6 months to wean. Amanda is handling it like a trooper though.

Amanda has been doing really well in all of her therapies. She also has been enjoying the outdoors. She walked over a mile on Friday night in her gait trainer. She also kicked a soccer ball. She thought that was pretty funny. She loves the gait trainer because it gives her some independence. Katie, Amanda and I got to play outside for almost 3 hours on Friday night. We went for a walk and Katie biked and roller bladed. Katie's feet are so big now that she is wearing my rollerblades. It is amazing how fast they grow up!

We also moved the horses down to their new place this weekend. We picked a great weekend to do this since it was 44 degrees and raining :-). It is so nice to have them close. Now Amanda can do equine therapy anytime she wants. Katie is really excited about being able to ride more often as well. She is also becoming quite adept at cleaning stalls and feeding. She is a big help.

Our other big news is that Terry from paws4people visited last week and the whole crew is coming the weekend of April 12-13 to do Azalea Festival and the South Beach Grill fundraiser. It is also official that ELLIE is being trained for Amanda!!! Yippee!! We love ELLIE!!! If you live in Wilmington, we would love for you to eat at South Beach Grill on the 13th! We will also have a booth at Azalea Festival both days! If you come by to see us at the booth, you will get to meet ELLIE! There will also be a dog presence at South Beach Grill (maybe even Amanda and ELLIE together if the weather cooperates).

Hope you are all having a wonderful spring! Thanks for all of your love, prayers, and support! May God Bless you today and always!

Susan

March 25, 2008 Update

2008-03-25T19:46:00.003-04:00

We spent the day in Raleigh today at the neurologist's office. Amanda had an EEG and then an appointment. All went really well. We figured out a lot of things. First, the head drops continue to be behavioral and are no big deal. The little seizures with her eye getting stuck that she has had while weaning off Topamax are not uncommon when switching meds and are also no big deal. She has not had one in over a week, which is nice. We bumped up her Keppra a week ago and that seems to be working well. She also has no big spikes on her EEG which is also a great sign. The other issues we have had over the last 3 weeks (crying, sensitivity to light, motion, an noise etc appear to be migraines. These have become more common since we got off Topamax but we are blessed that Tylenol and Motrin seem to work well on them. Hopefully they will become less frequent once her body adjusts fully to being off Topamax.

As far as Amanda's behavior goes, she has been a nut for the last 2 days (ever since we gave her some Tylenol and Motrin for a mild fever - yes you heard that right -- she had a fever and she did not have a seizure!!!!!!!! Yeah!!!!!!). Anyway, she has been giggling non-stop, pulling hair, walking all over the place (with help), doing a great job practicing her sitting and standing skills, playing with her toys, rolling all over the place, squealing with delight, eating like a horse, etc. It was amazing to see the transformation in her when the fever and migraine went away. She is one happy camper now and tons of fun! She was a wild woman in the EEG today as well. She was pushing, pulling, rolling, yanking my glasses off, yanking her glasses off, eating with great precision (reaching across her body to pick up small things), and laughing her head off. She thought the EEG was playtime.

Afterward, we got to see a friend from a CPA firm and then came back to Wilmington where she has been riled up ever since. She is having a great day! We hope all of you are having a great day as well. By the way, happy belated Easter! Also, Dan had a great birthday - he is 29 yet again! Amanda loved his birthday cake. I will have to post a picture of her all covered in frosting.

The other HUGE news is that Katie came home from school today with news that she is now reading on the 7th grade level!! She just loves to read! Tonight, she read an entire 120 page book! Way to go Katie!!!! We are so proud of you!!!!!!!!!

God Bless!

Susan

2008-03-12T14:04:00.002-04:00

Here is another update about baby Madeleine....

"Hey, I wanted to update you. They took out the jp drain and edv tube from her head. She is doing Fantastic!! She looks like a reborn child, her eyes are amazing how they are wide open and bright. She has always had a look of being dopey. She is holding her head up smiling and laughing. What a little trooper she is.They are tough I don't think I could have held up like she has ,it's just amazing how tough children are.We are being released today from the hospital but we are staying in a hotel close by the hospial for a few days,just to be on the safe side. Prayer works and God is GOOD!! GOD BLESS! Wendy"

Thanks to all of you who have been praying for her! It is wonderful news that she is doing so well!

Things are going well here. Amanda had her last ever dose of Topamax last night so she will be totally off Topamax from here on out. Our next step is to start weaning the Diazapam (Valium) so that she can get off of that. It takes a lot longer to get off Diazapam because it is addictive so it will probably take around 6 months to be done with it. Once that happens, we will only be on Keppra and hope to only have to take it twice per day. That would really benefit every one's sleep schedule since right now, we have to take Diazapam every 8 hours, so the last med of the day is taken at 11pm and the first one of the next day is at 7am. Amanda has handled the weaning of Topamax really well.

She has been a nut lately. Today she gave Dan a nice puncture wound on his shoulder when she decided to bite him out of excitement. Her therapies have gone well this week too. Her stamina at walking seems to be really improving. Now if we can get her balance to get there, she should have the skills needed to walk. We are moving our horses down near our house so that should really help us to get out to do therapeutic riding more often. I think Amanda's balance will get really good if we can do therapeutic riding at least 4-5 times per week.

Katie is doing really well. She continues to excel in school. She starts cheerleading with her best friend the first of April. She is also excited about having the horses 5 minutes from the house. It took a long time on the waiting list to get in, but it will be worth it.

We are starting to plan for the Azalea Festival event in April. Our friends from Paws4people will be coming down with several dogs and we will have a booth at the event to try to raise money. A local restaurant, South Beach Grill, has also been generous enough to help us with fundraising and awareness that Sunday. They will donate a portion of all proceeds that day to Paws4people. We are blessed that there are such nice businesses in the community that want to help us out.

We hope you are all doing well! God Bless!
Susan

2008-03-05T15:37:00.003-05:00

Thanks to everyone who has been praying for baby Madeleine. She had her hemispherectomy yesterday in Detroit with Dr Chugani. I got the following update today from her mom Wendy.....

"Madeleine's surgery lasted 9.5 hours. We were updated every hour during the surgery. She has done really good. We are in ICU but are moving to the neurosurgery floor today. She lost perpheral vision in the right eye, I haven't seen her move her arm,fingers or leg but has wiggled her toes. Hopefully that will come with time and therapy. I wanted to let you know how everthing is and talk to you soon!!"

Amanda is having a great week! She didn't enjoy the front that came through last night but besides that, she is silly and going strong. She is losing the Topamax tan more and more each day. It is strange to look at her and not see that tan look. She is just as beautiful with a light tone to her skin as well. She has been doing well making choices lately. She also is on a "no" kick with shaking her head. We do get some "yes" nods as well but she thinks the "no" shakes are much more funny.

Katie is also having a wonderful week. She is loving having 3 kids here to visit, ages 7, 10, and 13. All the kids are having a blast together. Too bad Katie is the only one who doesn't have spring break this week. She is making the most of her afternoons with the kids though. I am sure she would love for them to stay a few more weeks.

I hope everyone is having a great week. God Bless!

Susan

3/3/08 Update

2008-03-03T11:07:00.005-05:00

The new SlammerDogZ / paws4prisons newsletter is out and it is a great one!! Be sure to read the cover story -- as it is painful, touching, and hopeful all in one article. All previous newsletters are also posted at the website listed below. Amanda was featured in one, there was an article about our trip to USPH in another, and this time there is an article about ELLIE, the service dog being trained for Amanda. There are also wonderful articles about Grace Meek, the beautiful and inspiring 9 year old girl in WV that will be receiving COLT and articles about the inmates, dogs, etc. I encourage you to read everything. It is a great program and lives (including ours) are being changed!!! We can't wait until the next trip to WV (hopefully in April, and May, June, July & August - yippee!) to see Grace, the inmates, the dogs, and our paws4people friends again!!!
http://www.SlammerDogZ.org/newsletters

Amanda is doing well. We had a few blips coming down off Topamax but nothing bad. We bumped up her Keppra to a therapeutic level to see if the blips go away. She is in great spirits and is learning a lot and showing off her heightened intellectual skills to therapists, family and friends.

Baby Madeleine, another child in NC with Infantile Spasms whose family we correspond with, is having her hemispherectomy tomorrow (Tues 3/4) so please keep her in your prayers!!! Her parents are having to pay for the whole surgery out of their own pockets so if you know of any good ways to raise $66,ooo, please feel free to contact me. She is a beautiful baby and is blessed to have parents who will go to great lengths to do the best for her.

We have company coming in for spring break. It will be nice to see old friends again. Dan also comes back from Texas today so we will be excited to see him.

Have a blessed day!

Susan

February 29, 2008 (Leap Day!)

2008-02-29T13:43:00.003-05:00

Things have gone well for the past week. Amanda's visit with Dr Wooten went great. He was very pleased with her progress and her successful weaning down from high levels of Topamax. Already, Amanda is losing the Topamax tan, she has learned to sweat, and her cognitive skills have picked up substantially. The other night, she pulled every toy she could find out to play with and used the knobs, buttons, etc appropriately. She moved from toy to toy to toy as she got bored. She only got mad once when she couldn't "taste" part of a toy that she really wanted to bite on. She has been very happy as she has weaned off of Topamax. We are holding steady for a little while because both Katie and Susan have had head colds and we don't want Amanda to be weaning if she gets the cold. We will probably start dropping the last bit of Topamax in the next few days. Many of her therapists have commented recently about how interactive and egaged Amanda is. She is definitely a different kid now that she is off the high doses of Topamax. We couldn't be more thrilled with her progress. Have a great day/week!
God Bless!
Susan