Can you spare a moment?

I don’t usually do this, in fact lately, I haven’t posted to the blog at all…..but I’d like to share an important contest that is going on and I would appreciate if you would vote for my friend.

Military Spouse Magazine elects a Military Spouse of the Year each year. At this time, the voting is to pick a winner from each of the branches of the Department of Defense. My friend Stephanie Geraghty has been nominated for the Marine Corps spouse of the year and I would love it if you would click here and cast a vote for her. You do not need to be affiliated with the military to vote, and you may vote as often as once an hour…..It does require you to register, and you have to receive a confirmation email before you can cast your first vote. I’d greatly appreciate it you have the time.

Stephanie is a good friend and the founder of the running group, Stroller Warriors. My involvement with this running group started in 2010 and it has helped me retain the small bit of sanity I have left. It is a wonderful group of women, and my life is much richer because of having gotten involved with them. It is this group that has motivated me to want to run races often. Most importantly, it has given me a place where I felt that both Maddie and I are accepted. We can run with the other moms and Maddie’s delays and disabilities don’t preclude us from being able to participate. There are other folks in the club who have children with special needs and it has been great getting to know them while running together. In 2011, Stephanie’s son Cole was diagnosed with SMA, which I know many SN parents are familiar with, primarily because of the great work the Gwendolyn Strong Foundation is doing within the SN community, especially Project Mariposa.

Here is an excerpt from her bio:

My dream was to establish a free running club that would help alleviate stress for military spouses. This club would provide a source of camaraderie, strength, and support. The club would welcome the inclusion of children, therefore encouraging a healthy lifestyle for them and ourselves. The club would also provide a means to work together and give back to our surrounding military community. In January of 2010, my dream became a reality. I scouted out trails and parks appropriate for our needs and advertised through local media. Word spread and Stroller Warriors has thrived ever since. In 2011 alone, we hosted 56 workouts, sustained 178 active members, and gathered 1400 total attendees. With each runner averaging 3.5 miles per workout, that amounts to 4,900 collective miles. We established two new chapters in New Orleans and Okinawa and will add more in 2012. On an international level we have over 400 members. Stroller Warriors strives to give back to the surrounding community, especially our military families. Each October, we host a 5K race to raise money for Bubba’s Belly Run. The 2010 Army Spouse of the Year Nicki Bunting formed this nonprofit organization in honor of her late husband, Capt. Brian “Bubba” Bunting, to benefit families of fallen service members. We have contributed over $4,600 to this incredible cause thus far. We also encourage participation in charitable local races, especially Run For The Warriors, a race held in Jacksonville each May to benefit wounded military veterans. In addition to racing, we donated home-cooked meals to a local women’s shelter and fed 25 women on a weekly basis. We also reinforced membership bonds by establishing a book club and supporting numerous members in completing their first race or marathon. To date, 13 members have completed the Marine Corps Marathon and five had deployed husbands, thus setting a tremendous example for other military wives to emulate. We’ve already had two successful years but we’re anticipating that 2012 will be our best year yet. This upcoming spring the club will run the Wrightsville Beach Half Marathon to raise money for Families of Spinal Muscular Atrophy in honor of Cole.

If you are kind enough to take the time to register and vote for Stephanie, I’d like to mention that the contest is accepting votes to pick a winner in each branch, there is a very deserving spouse nominated for the Air Force also. Click here to read his bio and vote for Jeremy Hilton. He left active duty to care for his daughter who has multiple disabilities, while his wife serves in the Air Force. He is a strong advocate for improving healthcare and programs to help military families with disabled family members. Hopefully his advocacy will pave the way for important improvements in the way the military takes care of children with special needs.

There are many deserving spouses nominated this year. I know I am inspired by reading their bios. I hope you will be too.

Thanks for your time! I do plan to write an update soon on how things are going for Miss Maddie.

Liz

A Milestone

We just celebrated Halloween and I got some really cute pictures (which you may have already seen on Facebook) which I’ll share at the end of the post. Our Halloween was pretty uneventful. I dressed Maddie up, but she still doesn’t understand the concept of it, so our participation was pretty much limited to taking a few pics and letting her help me hand out candy. All in all, just another day. Until the next day, when I realized something important had happened. Maddie was diagnosed with leukemia on Oct 29, 2007. And so for the next three years, Halloween has been tainted by that memory. But I literally forgot all about it this year. The 4th anniversary of the cancer diagnosis came and went without my even realizing it. That is the milestone to which I referred in the title. Cancer no longer haunts me. At least not like it once did.

 

I’m sure part of me not remembering is based on the fact that we have just been very busy here. I try hard to keep positive about it all, but doing this alone is hard. Brandon has been gone for over 7 months now, but still won’t be home for at least a couple more. I greatly look forward to the next three years (starting when we move to Raleigh next summer) during which he will not deploy. He will travel a lot, but should be home much more than over the last three years.

 

We are still trialing a new seizure med called Vimpat. I am not sure that I have much more to say about it than I did in the last blog post. I am still hopeful, but frankly I am growing really tired of how slow we have to do all of this. It ruins her sleep every time I change the dose. I am worried we’ll still be working at the dose when Brandon gets home and I hate that he’ll return to such a chaotic sleep schedule. Though starting back at school has been a good thing, she has missed two out of the last three weeks due to sickness and sleep cycle disturbance. And the sickness has also made her seizures worse so I’ve been unable to adjust meds during it. I will be glad when we can keep her healthy for a bit so we can actually see what, if anything, this medication is doing for her.

 

I ran another half marathon last weekend and did really well. For me, at least. I accomplished my goal. It was really nice to feel like I followed through and did what I set out to do. Running is the primary way I manage my stress. It is my “me time”. I am usually pushing Maddie in the stroller, but she usually naps and allows me to just enjoy it. It gives me a focus where I can actually achieve things. I am such a perfectionist and it definitely takes a mental toll on me to constantly fail at finding a cure for Maddie’s seizures. I know I am a good mom, but it is really difficult not to be able to “fix” her.

 

 

 

 

 

 

 

I will try to update more frequently. The holidays are fast approaching so I’ll hopefully get lots of good pics to share. Also, at the end of this month my baby turns 5 years old. I honestly don’t know how that is possible. I think that’s why I’ve been slightly more emotional than usual lately. This child bring me more joy than I could ever have fathomed. She is the most amazing kiddo ever. But I never thought we’d still be battling her epilepsy at this age. I am incredibly thankful to have her here, and I know how close we came to losing her and how lucky she is to have beat her leukemia. But there are still a lot of challenges for her. So we just keep facing them head on.

 

Love to everyone,

Liz, Brandon, and our amazing Madeline

 

Sooooooo…….

It’s been awhile. I guess we got busy. And maybe just maybe I don’t like to report the fact that there has been no news to update on. Life goes on. Seizures do too. And we have had very little significant change in a long time.

But we have some recent news to update. So here I am.

The biggest news is that this week I left Maddie at preschool alone (with her teachers and other students of course) for the first time. She has the same great teacher this year as she has had since she began pre-K at age 3. Her one-on-one aide is a great woman who was in our class a lot of last year. So we have spent the first few weeks getting comfortable with the aide managing Maddie’s harness (how she walks at school) and learning her seizures and how best to protect her during them. And the amazing result is that I actually feel comfortable leaving her there for 2.5 hours each day. So far, it has gone well, but she has been having trouble staying awake through the whole (albeit short) day. Hopefully that will improve over time.

The next bit of news is that after fiddling around with the same three seizure meds (Banzel, Clobazam, and Lamictal) for an entire year in hopes of regaining seizure control, we have finally added a new medication: Vimpat. We had hoped to wean Lamictal first so that she would only be on three AED’s at a time (who knew that would ever be a goal?) but the Lamictal wean created a new seizure type and a definite seizure increase, so we are trying a combo of four drugs right now. It has only been two weeks, but I am optimistic. Things are definitely not great, but I see signs that we may be having some seizure improvement. So I will be patient. And I’ll try to update y’all on the changes.

There is lots of other news.

First, Brandon has been gone for over 6 months. This is a long deployment and there is nothing good I can say about that. We are very ready to have him home. On a normal deployment, we’d be gearing up for his return right now (they are usually just 7 months). But he is not due back until February probably. So we are just a bit over halfway…….with the whole holiday season to go. I am hoping the holidays will keep us busy so time flies by. But this has been a long one and I really look forward to getting it behind us.

Second, we know what we will be doing next. When Brandon returns from this deployment, we’ll have a few months here together and then we will all move to Raleigh NC where he will hopefully work for three years. And he should not have to deploy during any of that time. He will be in charge of the Recruiting Station which manages Marine Corps recruiting for almost all of North Carolina. It will be a very different job from anything he has done thus far in the Marine Corps. The hours are supposed to be very long with lots of travel. But I think it will be a welcome change. It will be interesting for sure……it will be quite different from base living and being surrounded by military families. So that’s the next adventure.

Third, despite all the seizures, which have remained relatively unchanged since they reappeared around Christmas last year, Maddie is continuing to make very slow progress developmentally. There is nothing fast, but it is clear that she can learn and that the things we are doing to help her are making a difference. She is still cognitively similar to children between one and two years of age, but it is better than last year this time. And she is such a happy child. And so loving. Lately, she asks for hugs all the time. By saying “hug”. Or maybe just “huh”. But it works for me and I happily indulge her whenever they are requested. So because of this progress, she is in school five morning a week and has therapy scheduled three afternoons a week right now. Eventually it will probably be all five afternoons. We have started ABA therapy which is highly successful in children with autism, and is shown to have benefits in kids with many types of delay. So we are busy and doing as much as we can without causing too much stress on a very heavily medicated child.

And finally, part of the reason I have been so busy is that it is race season again and I have been training for half marathons again. I recently ran one (1:53:46) and improved upon my times from last year but not as much as I had hoped for. I’ll run another in November and I will achieve my goal then. Running is an amazing stress reliever for me and gives me a tremendous sense of accomplishment. I recently pushed Maddie in a stroller during a 5k race and ran a time similar to what I ran in cross country in high school. I have a great group of women that I run with who have rekindled my love of competition and who push me to be a better runner. And their friendships make a really long deployment much more bearable. I’d like to give my mom a big shout out also for supporting my racing habit by coming down here to stay with us every time I want to run a race. And as usual, she spoils me by bringing meals and emptying my dishwasher and doing laundry too. I have an amazing mom!

Oops, there’s more…….I guess another reason we have been busy is that we moved this summer. In July, we moved into a bigger house on base and we were very lucky and got a larger home with a waterview. We actually moved ourselves (with the exception of paying movers for 6 hours one day) and I need to give big thanks to all four of my parents on this endeavor as well. Mom was here for the whole move and my Dad was here for some serious manual labor and to deliver a truckload of furniture. Despite it being a LOT of work, we had a good time too. And we really love our house. I will definitely miss it when we move. We chose to take a bigger house even though we knew that we might be moving next summer, but we are really enjoying it and all the space we now have for just Maddie and I. We can’t wait to share it with Brandon when he finally gets home to see it. In this house, we have space to have a playroom for Maddie that has a padded floor so that I can allow her to walk without the harness. I think that is part of why she is improving more…..she has more independence at times and gets to play more freely now.

And now for the recent pics:

It’s almost summer…..

Where has the time gone?

Brandon has almost been gone for two months. This deployment is different than our previous ones and so we don’t really have an exact idea of when he’ll return. But we are keeping busy, which helps.  He is safe and busy too. And I hear from him regularly via email which keeps me sane.

Maddie’s first full year of preschool is almost through and I’m thrilled to be able to say that Maddie is truly making progress. It isn’t fast, but we are moving in the right direction. She is much more verbal, though you could not yet really say she is talking. But I often know what she wants or needs now, so that is huge.

We are beginning to have to deal with behavioral issues, basically normal toddler stuff. It is a bit complicated to discipline a kid who I cannot put down because I have to be holding onto her to prevent her from slamming her face into the floor with a seizure. But I am really happy to see her making developmental progress, even if it now puts me in a quandary about how on earth to discipline her. She can be a handful. Actually, she’s always been a handful, but now it is in the way that most people use that term.

Other stuff…..seizures still suck. We are working on it as usual. They are a bit better than a few months ago, but they are still not good. She is wearing a harness now to walk. This means I follow behind any time she is walking all day. But her walking is much better, and she can actually run now. Though we are really a sight with me running right behind her.

Here are some recent pics:

So you can see from the pics, she is a really happy child. And that makes it all a lot easier. I am not sure how I could love this kiddo any more. We definitely still have our challenges here, but Maddie makes my job awesome. It can be sad and exhausting at times, but I just try to take my cues from her. And she is happy.

I’ll try to stay in touch!

Love to everyone,

Liz & Maddie

I’m getting really bad at this….

I’m going to quit apologizing for not updating since I’m unlikely to change that habit anytime soon. Life is busy.

What’s going on here is that we are still trying to regain seizure control and we aren’t there yet. Side effects are getting to be a big enough issue that we aren’t thinking we’ll get there with the current combo of meds. But we aren’t giving up on this combo yet…..we are trying to have patience and give each increase a chance to work.

Maddie is only able to walk with one of us holding her shirt or a new harness we got her. That is partly because she is still having seizures that cause her to fall on her face and partly because her coordination is getting worse and she has an ataxic gait. She is also far more lethargic than she was at lower levels of the Banzel.

I still go to pre-school with Maddie four days a week. We hope we can make some changes to her classroom situation so that I can leave her there for her class each day. It will be a major adjustment (which I know we need) but at this point it is very difficult for me to keep her safe because of the seizures, so I am not sure how to let someone else take on that responsibility.

So we remain hopeful but we know another med change is likely to be on the horizon.

Also on the horizon is Brandon’s departure. Rather than leaving this summer as planned, they will be heading out early, in a few weeks or so. This was not expected, but we are nothing if not flexible at this point. I think the only rule in our lives right now is that things always change.

And now a few pics:

First, of when she was doing really well……

Seizures returned Dec 18th and were pretty mild at first.

Here are a few from around Christmas:

Christmas morning

Christmas Eve

A few from after Christmas:

Having an ambulatory EEG at home Dec 28

More from the EEG

One of our many snow days

More recently, I’ve taken less pics, partially because she has fallen a lot and been cut or bruised which I haven’t wanted to memorialize. But also because I can no longer let her walk alone which makes photo ops hard to come by.

Still smiling after her first ER visit for a faceplant

Healing pretty well

Early February

So that’s all for now. I hope to be able to update next time that we are able to let her walk unassisted again. That would be huge for her.

Love to everyone!

A new year

First things first, merry Christmas and happy new year to everyone! I have been a bit silent lately. I am looking forward with hope to this year….that it will be the best so far for Maddie.

Lots has gone on since I last posted. We had a wonderful Thanksgiving, spent with my family in Charlotte. We ate well and enjoyed family time. We were especially thankful for Maddie’s improvement. As soon as we returned to Camp Lejeune, Brandon left for a training activity in Virginia for over two weeks. During that time, Maddie and I made our first trip down to Kiawah in a long time and we visited with the rest of my family. My dad, brother and I all ran the half-marathon. It was awful…..40s and raining the whole until I hit mile 12. But we completed it. I still ran better than my first but it was not the race I had hoped for. Oh well. There are worse things.

Maddie and I returned to Lejeune a few days before Brandon came back from Virginia. They finished the renovations to our house in time for us to decorate for Christmas by mid-December. Given how little time together we’d had lately, we decided to stay here for Christmas and New Years. Most importantly, so we could actually relax a bit and enjoy our time together. But also because Maddie had been doing terribly in the car on trips and we had just seen family Thanksgiving and early December. On the day that Brandon was due to return from Virginia, Maddie’s seizures decided to come back too. They have been back since then despite medicine changes in an attempt to get back to where we were.

We are pretty crushed. We definitely had begun to see a different future ahead of us. I was thinking maybe I could have her potty trained by kindergarten. She is almost 3 years behind her peers, but we could see forward progress for the first time since seizures began in December of ’08. We had planned to turn our new sunroom into her playroom, but it has a tile floor with concrete underneath so that is just too dangerous for her now that she is falling again. I guess the mistake we made was letting ourselves think too much about the future. That is what hurts the most.

So the evil seizures are back. And she had just learned to enjoy her new-found freedom, so controlling her is harder than ever. She doesn’t understand why I can’t let her play without holding her hand or her shirt at all times. But the drops that make her fall to the floor face first are back. So danger is everywhere for her. And she doesn’t get it, so I am constantly frustrating her by stopping her from doing the things that she could do just last week. It really sucks.

There is a positive side. The brief respite from seizures must have allowed her brain to heal, or at least it allowed some progress to be made. And that is sticking around mostly. She is using a handful of words and is very communicative. She lets me know what she wants which is awesome. She has learned some motor skills that she has
never really before mastered. Unfortunately, her balance and
confidence walking has already started going downhill since the seizures returned.

It was good while it lasted. But somehow the taste of a life closer to “normal” makes it harder to return to the seizure filled life.

There a couple of other things.

Two days before the return of her seizures we got news from her geneticists that she had tested as having a gene that is responsible for a type of mitochondrial disease. It’s not conclusive yet that she has mito. It’s a bit complicated, but the basic science is that she has one copy of this gene (she is a heterozygote). If you have two, you definitely have this type of mito with all the horrible stuff that goes along with it. But if you only have one copy (as she does), you have to have a few other genetic changes also in order to have the associated mitochondrial disease. We are still waiting on those tests.

I’m not going to go into detail about which type of mito it is because I don’t want you to google it and see all the horrible stuff associated with it. We did not suspect she had it…..we actually only tested for it because we wanted to be able to try the drugs depakote and depakene if she failed her current regimen. Kids with this type of mito often experience sudden organ failure if they are put on these drugs. So now we have two less to try…..Even if she is just a heterozygote and does not have the mitochondrial disease, it’s too risky to try the drugs. Glad we never did before. Good call, Dr. Greenwood!

My grandmother Izzy is extremely sick too. Just befroe Christmas, she underwent surgery to remove an infected gallbladdder. Unfortunately, by the time it was removed the infection had spread and she has now been in the hospital for almost a month fighting the initial infection, a blood clot, and aspiration pneumonia. Please keep her in your prayers.

I typed most of the update almost two weeks ago but never published it because I couldn’t find the time to finish it. Since then, I accidentally poured a cup of coffee into my new MacBook. Which I haven’t had time to replace. And where I kept all pics of Maddie for the last seven months with no back up. I’m still hoping they can be salvaged but the hard drive was still wet when took it in the first time. Learned a lesson there.

And this Saturday Maddie had her first sort of normal kid injury. It was caused by her lack of coordination rather than a seizure. She fell face first and put her front tooth through her lip. The ER visit was not too bad and she didn’t require stitches. It is healing much more quickly than I expected.

So that’s how things are going. I hate to be the bearer of bad news but that’s pretty much all we’ve gotten lately. But she is super amazing and we couldn’t love her more.

Love to everyone,
Liz

Good month

There is so much to say about all that is going on with Maddie right now, but I just haven’t had the time. The most exciting thing is that as of the 18th, she had not had a big seizure in a month. A whole month. That part feels like a dream to me. She has not had a drop in three weeks. This has changed our life. I still know it may only be temporary, but to be able to get a sneak peek into what our kiddo is like without all the seizures is amazing.

Her walking is getting better everyday. Thursday and Friday I let her walk unassisted down a very long hallway in her school. With concrete floors! Parents whose children have never had a drop seizure won’t understand the enormity of this. But she is really making big improvements in her walking.

Thursday night as I cooked dinner, she was making laps back and forth across our kitchen and back hallway. She was so proud of herself, and she was really trying to go fast. It was almost a run. And it brought me back to when we visited Brandon’s new home in Quantico in August of 2008, when she was 20 months old. She was doing the same laps, with the fast walk, pumping her little arms then.

Aug 2, 2008

I guess I could be sad about the fact that Madeline will turn 4 at the end of this month and that we are just beginning to see her do stuff she was doing at 20 months. But I am not. I am thrilled. To get to see her making herself laugh, a bit of a sparkle in her eye, even the beginnings of that terrible toddler defiance…….One of her only words right now (the verbal stuff is not coming back as quickly as walking) is no. And she likes to walk around and say no to all the items I tell her are no-no’s. I must say “no” a lot. She is not playing with toys appropriately yet, unless you count balls, because all she does is throw everything. But she enjoys it, and that is wonderful to see.

It isn’t all sunshine and roses though. I’m incredibly grateful for the amazing improvements we are seeing, but there are side effects too. The mood swings are pretty wild. Somedays she just cries half the day. And I have no idea why. She also has some tummy distress, and is frequently refusing to eat or drink. For a skinny kid, this is not good. Plus it is incredibly frustrating when she spits everything, including her meds. It scares the crap out of me to think that I might not be able to get her to keep her seizure meds down. She seems to dislike being restrained now that she is enjoying the newfound freedom of walking. So the carseat, jogging stroller, and high chair are really not fun for her. This makes life a bit difficult at times. I’ll take these problems anyday over the constant seizing.

And as far as seizures are concerned, I am still pretty sure that she has some very mild spasms as she falls asleep. But that is the only time that I am convinced she is having seizures. We will likely do an EEG sometime between now and Christmas to see if we are really seeing the improvement we think we are.

On the subject of testing, we did go to Chapel Hill last week, but we changed the type of testing she had. We decided to do a skin biopsy to look for mito instead of a muscle biopsy. This meant she did not have to be put under anesthesia for the procedure. Instead she just had a local anesthetic and we held her down for it. It was no fun, but was over fairly quickly. We also had a number of other blood tests drawn. So we’ll wait weeks for the results of all of those tests.

There’s another bit of info from recent blood tests…..A few months back we did a gene microarray on Maddie and found that she has a small defect, a duplication of two genes on one chromosome. There is no data that suggested that these genes might in any way be linked to her diagnoses, but of course we wondered. So Brandon and I were tested as well. Brandon’s test came back normal, but mine did not. It confirmed that I have the same gene duplication as Maddie. I just found this out, so I have not had my genetic counseling appointment yet, but in an email Friday morning, Maddie’s geneticist confirmed what I already suspected, that this most likely means that it is a “benign familial variant” which is unlikely to be the cause of all her issues. So this mainly means we still do not know what caused her epilepsy, but the number one theory is still that it was caused by her chemotherapy treatments.

At this point we are just trying to enjoy every minute. We are so thankful for the good days we are having and we pray that the improvement continues. I have tons more to say about it all, but no more time. Chasing a toddler is much more fun than typing……

Sunset at the beach last week

Love to everyone,
Liz, Brandon and Maddie

Time is flying by

We have been super busy with the Marine Corps Ball and Halloween. Things are still going well with the new med, Banzel. As of today Maddie has not had one of her big seizures in 15 days and I haven’t seen a drop since Saturday. There is definitely still seizure-y activity, but the improvement we are seeing is amazing. I think I had mostly given up hope that adding a new med could help her this much. Of course, I am still highly concerned that all the bad stuff could just creep back in as she becomes used to the medication. But we are hopeful. And extremely grateful for the good days we are having.

I wanted to share a pic of us dressed for the Ball. We had a great time.

We really enjoyed our stay in Myrtle Beach. The Friday following the Ball was Oct 29th, which also happens to be the 3 year anniversary of Maddie’s leukemia diagnosis. We celebrated the fact that she remains in remission and had a relaxing day at the beach.

 

 

 

We returned home from Myrtle Beach on Saturday and spent the next two days watching football and prepping for Halloween. Brandon even carved our pumpkin (can’t remember the last time we did that…..). Maddie wore a ladybug costume and looked absolutely precious. She is improving cognitively, but is still nowhere near understanding Halloween or the concept of trick-or-treating. So we just enjoyed taking pictures of her looking cute and walked up and down the street together. This was the first remotely normal Halloween we’ve had with Maddie (first: 2 days after cancer diagnosis, second: low counts from chemo, just out of hospital, third: just out of hospital on ketogenic diet so candy=forbidden). We just enjoyed the sweet simplicity of it. And got some great pics.

 

 

This last one is my personal fave. Two weeks ago, there is not a chance we would have allowed her to walk on cement only holding one hand. Not only could she not have walked with balance, but the risk of a drop seizure onto concrete was just too high. It was an awesome moment. Except that she is constantly trying to break free of the hand-hold to get loose and walk on her own. Which she can do now. We still take precautions, but it is a world apart from where we were just two weeks ago.

I have so much more to say about how things are going, but things are busy and since they change each and every day, I will reserve my more in-depth report for later. I am running a half marathon Sunday and next Wednesday Maddie is having a muscle biopsy (under anesthesia) to check for mitochondrial disorders. We have always assumed chemo caused her seizures, but we are still trying to rule out other causes since her epilepsy has been so severe and hard to treat. It seems like a weird time to do it, since we are finally seeing some success, but we have been waiting to schedule the test for a long time so we are doing it. Please keep her in your prayers, especially on Wednesday.

Love to everyone,
Liz, Brandon, and Maddie

Update in more detail

As stated in my last post, Maddie is trialing a new anti-epileptic drug, Banzel. She started it on Oct 16th and we have increased the dose since then. Immediately upon increasing the dose, we stopped seeing her worst seizures. She had been having them 4-6 times daily. She was also having hundreds of head drops daily (coming in 10-15 minute clusters). These have decreased to about a handful of drops daily. Maybe even just two.

She is still having what we call side to side seizures, where her eyes deviate very hard to one side repeatedly. But they are dramatically decreased as well. There is another behavior that we think is a seizure which she continues to have also, but we can interrupt it (though it resumes after interruption) and it is happening less frequently now too.

So for the first time in a very VERY long time, we are seeing big moves in the right direction. We are incredibly hopeful that this will be the drug combo that finally gets our little girl seizure free. But we are also extremely scared and nervous that she will soon become used to this drug as she has in the past.

This is the first time since December 2008 that she has not had clusters of myoclonic jerks daily. We had one period of two days in March 2009. That is it. And she has not had a strong myoclonic since Monday evening. I cannot tell you how amazing that is for us.

We’d love to think that this is the beginning of her healing, but even if it isn’t, to get to see my little girl without these seizures that knock her down to the ground for even a few days is a huge blessing. In a strange coincidence, Brandon and I had just decided it was time to just suck it up and assume that this was how things were going to continue, and we bought a bunch of gymnastics mats and soft gates to make a safe place for her to practice walking in our home.

The mats arrived just as the big seizures stopped and she has been spending hours daily on her feet with no assistance. She still falls, but much more safely, on the mats. And she is building strength and stamina. And maybe even balance. Balance has been her biggest stumbling block, no pun intended, for a very long time. Even though she seemed to understand how to walk and was motivated to do so, her balance was just not good enough to allow her to walk safely.

Maybe the best part though is that she just seems to be more with us now. She makes better eye contact all the time. She is much more aware of her surroundings. She notices things and points to what she wants. She is trying to verbalize a bit, but that is not coming fast. She just seems happier and more interested in everything. When we put her down to play, she will now get up and walk or scoot to what she wants to play with rather than waiting for us to hand her something. I’m guessing most of you with normal children wouldn’t have imagined that was how bad things had been for her. But in reality, she has been functioning cognitively like an infant for awhile. And she has had less interest in things than most infants. So this is a huge change for us and we are just thrilled to see it. As I mentioned before, we have intense fear that it will be fleeting. But we are just trying to enjoy it, make the most of it, and pray that it continues.

In other aspects of our life, things are busy and interesting. Brandon is working more than I could have ever thought possible. We only see him a bit more than when we lived in separate cities. But we are happy to know that most nights we are all safely in bed in the same house.

This week we will head to Myrtle Beach again for his Marine Corps Ball. Mom and Lance will come with us again to watch Maddie and hopefully have some fun down in Myrtle Beach. So we look forward to enjoying a bit of time together this week and  weekend. It will also be nice to get out of our house for a bit. The house we live in on base in currently undergoing renovation while we live in it. Our house is currently surrounded by chain link fences on both sides and we can only enter and exit via the front door. Some days they are working on both sides at the same time and it can be quite loud. Hopefully the renovations will be done by Christmas.

I am running a half marathon in Wilmington in early November and another at Kiawah in early December. Not quite sure what I was thinking, but it will be a fun experiment. Looking forward to mid-December when I can go back to running just for fun and not having to follow a training schedule. I recently ran a 10k that I really enjoyed. I think that is the length race I’d like to concentrate on improving. That will likely be my focus after I complete the two half-marathons.

I’ll try to post some pics and videos soon!

Love to everyone,

Liz, Brandon, and Maddie

Quick Update

So I feel guilty even writing this quick post because I have been so lackadaisical about posting lately. Frankly, that has been because things have not been good. And while I can often find ways to sugarcoat things or find the positives to share….. lately, seizure-wise, that has been difficult. It has also been tough to find positives developmentally. She has been stuck in a rut, and I have even been questioning the value of school because there has been no forward motion whatsoever.

I promise to go into more detail later about all that she has been going through lately (lots of med changes). But the reason for posting now is that we are seeing some significant seizure improvement for the first time in a very long time. She has recently started a drug called Banzel that I really did not have a ton of hope for.  I know of one great outcome (seizure freedom!) from this drug (in an incredibly sweet little girl, Reagan) but otherwise the reviews have been pretty negative. Even our Neuro said he did not have much hope for it, but sadly, we have very few drugs left to try.

But we are having some very encouraging results already. And her pattern has been to have good results to new anti-epileptics early-on, and then eventually her brain finds a way to seize around them. So because I believe in the power of prayer, I am asking for yours now. Please pray that this drug, Banzel, is just what we need to finally rid our amazing little girl of the seizures which have stolen everything from her. She really needs this. Brain surgery is not an option and we have very few drugs left to try.

Thanks for caring for our little girl. And I will update in more detail soon.

Love to everyone,

Liz