Back to reality

So we are back home (in Charlotte). And happy to be here, even though Maddie is not a candidate for surgery. I guess I am a little disappointed, though not nearly as much so as I expected.

I know if she HAD been found to be a candidate for surgery, I would have probably been rejoicing it right now. But I have to admit I am a bit relieved. I was scared of the idea of surgery, and even more scared of having to make that choice.

What it means for her right now is that we are no closer to finding a solution for her seizures. But we did really like the doctor there and he did give us some ideas as to what we should try next. He also seemed to put a positive spin on it all, and he seemed to think that Maddie’s spasms would change into another seizure type (this option ranges from okay to very bad depending on what type she ends up with) or that they may just go away altogether. This is not news to me, but for some reason, he just seemed so sure of it, it made me feel better today.

I am just mentally (and physically) exhausted right now. But for some reason, I feel a sense of relief. Partially because he spent so much time talking about how he liked our local Neuro and that he agreed with all the steps we’ve taken thus far. And partially because now I know I’ve done all I could do, that I’ve exhausted the options available to me.

So our next step is to try Zonegran which we never gave a fair trial. If that doesn’t get her seizure free, we will try the Ketogenic diet. We have been interested in the diet for awhile, but our hold-up has been that she is still breastfeeding. We will have to stop that, which is certainly okay at her age, but I have held onto it because of the fear of her cancer relapsing. Nursing has provided her (and me) so much comfort during all of this, and the idea of facing a bone marrow transplant without being able to nurse her makes me sad. But the ketogenic diet shows alot of promise for lots of kids with epilepsy. So if it comes to it, I will wean my little girl.

And for those who care about the details: the FDG PET showed diffuse hypometabolism of glucose throughout the entire cerebral cortex, so there was no sign of a focal point where the seizures originate. The FMZ did suggest a focus in the left hippocampus and temporal lobe. However, because the EEG showed some spasms originating from the left but others originating from the right, they did not feel there was enough evidence to provide any certainty that the left hippocampus was truly the source. But again, down the road, as the seizures change, it is possible a focus will emerge.

So we are back to our reality of trying meds and hoping and praying they help. But I am committed to finding something, and at least I know we tried.

And one more very important thing: Our IS buddy Bennett had a temporal lobectomy today. He is resting in the PICU now and it sounds like things went well. They removed his cortical dysplasia and a brain tumor which they believe to have caused his Infantile Spasms. Please pray for a smooth and speedy recovery for him and for his parents’ strength and patience during this tough time. We hope this will give Bennett a chance at a seizure free life.

Love to everyone,
Liz, Brandon, and Maddie

Two down, two to go

We are back at our hotel after a grueling two days. Maddie was truly put through the ringer. As a mom, it is so hard to know that I chose to come here and put her through all this testing. She has just had too much stuff done to her and I wish there were a way I could protect her from it all.

That said, we are done with the worst of it. She had hundreds of seizures on the overnight EEG, so we feel sure they should have some good data there. The biggest hurdle today was getting a good IV line in her. They had one put in upstairs before we went down for the PET scan, but by the time they were ready for us downstairs, that IV was no longer working. It took us awhile to get another line started, so Maddie was absolutely screaming and sweating by the time they injected the tracer. Then from the stress of it all, she had a huge cluster of seizures during the uptake EEG. She then continued to have seizures while sleeping in the PET scanner. She had not slept at all last night so after the PET scan was over she just did not want to wake up. She slept off the sedative most of the afternoon, so it could be another interesting night. She has to begin fasting in the middle of the night again for the PET tomorrow morning.

So we have another PET Wednesday, which means starting another IV in the morning. Then we will return to the hotel and maybe even venture out and see something other than the inside of the hotel or the hospital in the afternoon. Then Thursday morning we meet with Dr. Chugani to get the results of all the testing and see if surgery might be a possibility for Maddie.

Now that I am here, I think I am getting my hopes up that he will in fact say she may be a candidate for surgery. I had tried to keep my expectations low, because I hate to be disappointed. But I just think that I couldn’t have put her through all this if I did not have hope that it might lead to a better outcome for our little girl. Either way, it was something we had to do to try to answer all the “What Ifs?” in our heads. I think that at the very least we will get good information about our next steps in this fight to get her seizure free.

So keep her in your prayers please as she undergoes more anesthesia and testing and as we get the results.

Love to everyone,
Liz

*random note* for anyone interested, I finally added a link to a video of her seizures on the main photos page. If you click on the Photos tab at the top of our site, the link is on that page.

A Day in the life…..

Rocking out to some good eighties music, I drove my SUV behind a convoy of Humvees, mesmerized by the beauty of the illumination flares dangling in the air above training areas in Camp Lejeune at midnight. I was making laps around tactical training areas trying to get Maddie to sleep (the vibration of the car has been soothing lately) and I got to see some of the training going on. The way the flares hang in the air lighting the battlefield is beautiful yet so scary to me. It conjures up pictures of things I don’t really want in my head as Brandon prepares for another deployment. It is nice to be back in Lejeune though. I feel reconnected to the Marine Corps and our old life.

I finally headed back towards home when she had been snoozing about 15 minutes. Unfortunately, a cluster of seizures woke her just as we were pulling back into our neighborhood.

We got some sleep during the night, and when we woke up I packed the car yet again for another trip to Charlotte. We will fly out of the Charlotte airport for Detroit Monday morning. I packed the car while Maddie slept all morning in my mother’s lap (this may play in to why she isn’t sleeping at night….)

Brandon called as we were just prepping to lock up and jump in the car. The five minutes I got to talk to him were spent reviewing the details of our will that is being revised in preparation for the deployment. And discussing that we will be filing a grievance against the insurance company when I have time to think about it after the trip. They denied covering our visit up there so we had to switch plans in order to see the doctors we want to see (with additional costs, of course). Our insurance is still so good compared to most people’s, I feel silly even whining, but it is the principle of it that is really irking me. Plus the fact that I’ve wasted time I don’t have jumping through hoops for them. Anyway, moving on….

Driving back to Charlotte I had too much time to think. And I am trying to think about anything but the upcoming week’s testing and the possibility of brain surgery. And the even scarier possibility that brain surgery won’t be a possibility for her. And so I reflected on just how odd a typical day is for me.

You’re jealous, I know…….

Love to everyone,
Liz

Planning a trip

I wish we were planning a vacation, but instead we are planning a trip to Detroit to see the famous Dr. Chugani. We go up Monday the 24th of August and will be there through the 27th. While we are there, Maddie will have a 24 hour EEG. To put the leads on there, they will swaddle her like this:
1st_Detroit_Trip_032[1]1st_Detroit_Trip_034[1]
That is Trevor, Danielle’s precious son who was just seen in Detroit. I am dreading this as she always hates that part and being restrained (while speeding up the process) is probably going to stress her even more. Which leads to bigger seizures.


Then, for the last 6 hours of the EEG, she will have to fast because she is being taken Tuesday afternoon straight from the EEG to the first of two PET scans. That one (the FDG) is a relatively short PET. Then we will leave the hospital and go check into our hotel for the night. But she will have to fast most of that night too, because first thing Wednesday morning she has another PET scan (the FMZ). This one is longer, and they said we will be at the hospital til early afternoon. Then we’ll go back to the hotel and rest, until heading back to the hospital Thursday morning to finally actually have a visit with the good doctor. And then we fly back home that afternoon.


Sounds fun, right?


All of this is being done to find out if Maddie is a candidate for brain surgery. If they find that most of her seizures are originating from one location (a seizure focus), then theoretically they could cut out that part of the brain and either stop or reduce her seizures. I know it sounds drastic, but we have yet to find any real hope for seizure control with medication. We still have more to try, but with each med failure, the chances of success in finding seizure freedom get lower. She has been having seizures for over 7 months now and she has only regressed in that time. We have seen no forward developmental progress since she was 2 years old. So we need to see if surgery is an option.


Unfortunately, for most kids with Infantile Spasms, surgery is not an option. It is because these seizures are usually very generalized, meaning the whole brain is involved. And she obviously needs to keep alot of the brain in order to function. So we go with hope, but knowing we are likely to be disappointed. And that is the part that scares me the most. While brain surgery is scary, to me it is even scarier if that surgical door is closed, and we are stuck in the trying and failing medicines game that we are playing right now.


So we are optimistic, but only very cautiously so. I am also hopeful that even if she is not a surgical candidate, that Dr. Chugani, with all his IS knowledge, will point us in the direction of some further testing that may be helpful. Or that he may have other treatment ideas. We just need some new fresh thoughts on what to do for her. We love our Neurologist, but we just want to exhaust every option. Which he agrees with totally. So to Detroit we go…..although we are still waiting on the final approval from our insurance company…..hopefully that comes early this week so I have one less thing to stress about.


And for this trip, my mom will be accompanying Maddie and I. Brandon will still be in the California desert training. We came to the decision to go ahead and do this now so that if (a big if) she needs surgery, we might be able to do it before his deployment. The other week they offered us for the Detroit visit was his last week of leave before the deployment. And as much as he wanted to be there, that is not really the way we want to spend our last family time together. I can say without a doubt that we have had enough quality family time together in a hospital for a lifetime.


This trip could not come at a better time seizure-wise. For some reason, her seizures have been on the increase lately. Right now she has four clusters of about 20 minutes of seizures per day. Plus some other head drop seizures and single spasms. So seizures are not under control at all for her right now. More data on the EEG for the neurologists to work with I suppose……


This beautiful, amazing, wonderful, happy little girl needs a break. 20090608_4797


Love to everyone,
Liz, Brandon, and Maddie

iPhone pictures: A different view

Maddie finished her ACTH treatment Monday. This round was almost 60 days of steroids. She has had over 100 days since being diagnosed with IS in February, and over 200 days of steroids since her leukemia diagnosis in late 2007. This is most certainly not good for her and only time will tell how much damage they will have done to her brain and body. I will not put her through steroid therapy ever again!

I realize that I mainly post good pictures of Maddie, but the reality of our life is that there are alot of times when she does not look so perfect. I have been pretty lax about taking pictures of Maddie since the onset of the seizures. Part of this is just a product of how busy she keeps me, and that I don’t always have time to grab the camera when the urge strikes. There is also the fact that she is quite moody, and doesn’t love to just ham it up for the camera like she used to. The other part, I am more embarrassed about. It is that I am not sure I want to capture all of this and commemorate it forever. It is painful to look at pictures now and think, oh, that was just before (or after) that particularly nasty cluster of seizures. But also, she looks different. The meds have made her gain tons of weight, then lose it, then gain it all back again. And as foolish and horrible as it sounds, I like it when she looks like my beautiful, perfect Maddie. I am less fond of the pics when she looks like she has been blown up with an airhose.

But she is always my beautiful Maddie. And I need the bad ones to remind me of how much we are constantly putting her through. And how amazing she is that she keeps rebounding from it all.

So I am sharing some pictures from my iPhone that I have never shared before. I took them at times when I didn’t have time or just didn’t want to pull out my real camera. There are a few at the end from my real camera, just because they help complete the picture of the last few months. These are real pictures of Maddie.

I didn’t mean for this to be all about the weight fluctuations, but it really is a devastating side effect of the steroids. Of course, during this same time period, I have some absolutely beautiful pictures taken of her, both by Angela Shea and myself. But these are those that I wouldn’t typically share. I hope sharing them gives you a little more sense of the enormous amount of absolute crap she has gone through.

I am not allowing comments on this post. I know she is always beautiful, at least she always is to me. I didn’t share these so I could hear how beautiful she is, but rather to give you a different glimpse of her and all we have put her through.

Love to everyone,
Liz

I love this……

I am borrowing this from my friend Danielle’s blog. She too has a child with Infantile Spasms, Trevor, who is absolutely adorable and amazing. They are actually in Detroit right now (seeing Dr. Chugani, who we plan to visit soon), waiting to hear if indeed Trevor is a candidate for surgery.

A recently reunited college friend of hers wrote this:

(It is written for parents of special needs kids, which I now am, but it also applies to being a cancer parent, in my opinion)

Top 5 Things Your Friend Who Has a Special Needs Child Wants to Tell You

I never realized what these parents go through until I witnessed it first hand (sort of) when I was reconnected with a friend from college. Her son suffers from a devastating seizure disorder (Infantile Spasms)and it really opened my eyes to what they are going through.

As I began to pray for her little boy who is only a week younger than my own child, God began to show me how to be a friend to her even though we are separated by over 1,000 miles. I am not saying that I am a great friend but I want to share with you a few things I think has helped me be a better friend to her.

So here is #1…

Do your own research but don’t email your friend the 1 million websites that you find concerning her child’s disorder BECAUSE unless she doesn’t have the Internet she has already looked at every single one of them over the course of 5 sleepless days and nights following the diagnosis.

The reason why I say this is because you need to be informed. This is the closest you will get to understanding what your friend is going through and you need to be equipped to help her explain to others what is going on. Your friend has to explain what is wrong with her child more times a day than you have to pee and she probably is to the point that she just wishes she could put it on a brochure and hand it out to all the inconsiderate poops in the world who stare and make faces and ask dumb questions. She needs you to already “get it”. She needs you to be able to sit in the room with her child while she eats her dinner or returns phone calls from the doctors and know that her child is safe with you because you know what is going on and how to help her child if they need it.

#2…

She needs you to shut up! or BE quiet! whichever you prefer. I am not really partial to either word so its your choice. There are so many different SN children but unless your child has the IDENTICAL disorder, DO NOT say “oh I know how you feel.” CUZ’ you don’t! you don’t have a clue and no matter how much time you spend with the child and your friend you still did not give birth to a child that has a special need and you don’t know how they feel. I will give you an example from my own life that may seem a little extreme but I think you will get the point.
When I was 6, my sister who was 8, died from complications of juvenile diabetes. About 4 months after her passing it was Fall and kids were going back to school. A friend of my mom’s stopped by our house one afternoon whose daughter had just left for college and it was about 20 hours away from where we lived. She sat at our kitchen table blubbering and babbling about her little girl being so far away and then

She said it

yep, you guessed it

she said, “OH [my mother’s name],I now know exactly how you feel about [my sister’s name]! I feel the same way!I miss my baby girl so much!”….well, my lowly, meek and mild mother lost it, probably one of three times in my life I ever saw her that upset. She responded back to her, “You don’t have a clue how I feel, your daughter will come home for Christmas, you will get to see your daughter walk down the aisle one day, you will celebrate another birthday with your daughter and I will never ever get to do that with mine!”

Get my drift…. Those words can be so hurtful when you may mean them to be helpful and if you are one of those people who say to that “well, they need to not be so uptight, I am just trying to help.” YOU need to go back and take TRUE FRIENDS 101 and get your head out your rear because being a friend to her requires for you not to be such a self-centered poop!

I feel like this is one of those friendships you have to have in your life. You need to know what its like to always put some one’s feelings before yours. You need to allow them to have complete phone conversations without you really responding. They need to turn to someone that they can just be open with and not have to worry about hurting your feelings by not giving you proper “air time”. You need to understand that the blessings you receive by being so selfless outweighs any other friendship you may have.

#3…

Watch the “religious” talk.

I know you are wondering why I would say that right? I mean, I am a Christian and I should want the whole world to know about God and how He has worked in my life but I think that sometimes the redundancy we as Christians use when someone is ill does more harm to our image than anything else.

If your friend is a believer then they probably already know everything that the scriptures say about handling trials in our lives. They really don’t need you to quote scripture to them and give them every Joel Olsteen book. Trust me, they know the verses and they REALLY don’t have time to read right now. If they want to read they will pick up the book themselves. Some people find comfort in self-help books but a lot of people when they are overwhelmed with LIFE just want some quiet time to reflect not to read a book that tells them they are handling the situation wrong. Often times all they need to know is that you are praying for them and once you have let them know that, be quiet.

If your friend is not a believer, now is definitely not the time to preach at them. The last thing they need in this world is your religious quotes. I have seen people who are not close to God be pulled even further away by an overzealous Christian who means well but their delivery draws a vacuum. Sometimes Christians can also cause the unbeliever to feel as if they are going through this trial because of their unbelief which cant be further from the truth.[See complete side note] You treat the unbeliever just like the believer, let them know you are praying for them and be quiet.

[COMPLETE SIDE NOTE]

okay… back to trials in our lives vs. God. I heard it said best from someone whose child died tragically in a drowning accident, Things happen because we live in a sin-filled world and while God is always in control Satan still has a strong hold on this world too and this world is a fallen place and we are a fallen people. Still not making sense, well to those who feel like only bad things happen to those people who are less than perfect in their Christian walk let me remind you of the verse that says all our righteousness’ are as filthy rags and also, you should read the book of Job. See, sin entered the world and bad things are going to happen but in God’s eyes our works mean nothing to Him because He never wanted it to be about works He wanted it to be about TRUST. He wants us to trust in Him while always remembering that one day we, as believers, will be resting in His presence and all our trials will be gone.

#4…

DO NOT, I REPEAT, DO NOT suggest “this great organic diet that you saw on an infomercial that, you know, that blond actress whose child has a disability switched her son to and he was magically cured!”

I will let you in a little secret, I do believe we should watch the amount of man-made chemicals we put into our bodies but I don’t believe that eating 4 lbs of raw carrots which have not been “tainted” with pesticides is going to cure a SN child. In the actress’ case, maybe it did help. Her child has a very relevant disorder which I know a little about because I have a friend whose child suffers from autism and it is a scary sad disorder so please, please don’t think that I am “downing” her or her child, I promise its not that at all. I just don’t think its the cure-all for every child with every disorder. I realize there are certain diets that show improvements in certain disorders and trust me, if the parent has done their research they already know about it. Be careful again how you mention things to that parent. IF you tell them their child needs to eat all organic or if you allude to the fact that the condition their child has was caused by them not eating organic you have done more damage to that friend’s spirit than what can be repaired.

#5…

You need to be their biggest Cheerleader.

As I have mentioned before my friend with an SN child lives 1,000 miles away so this one is a little harder for me.

[ BECAUSE D, I promise you, if I lived there, i would make myself a cheerleader outfit and put my hair in pig-tails and put a big T on the front of my shirt and everyone in your town would say “Good Lord, please give that woman her meds and send her home!” ]

I am not tooting my own horn at all but I know that you are vocal about things that you are passionate about. Everyone at my work knows that my one wish is to be able to fly to where D lives this year and see her, my family and friends all know about my friend’s child and they often ask me about how they are doing. Even on National Epilepsy Awareness Day I had 3 co-workers in purple that day! They need to see your support. Think about it, when the football team is down by 2 and they just feel like they cant move that ball another inch what gives them the motivation to get out there and move that ball into field goal range…

THE CROWD!! THE YELLING AND THE SCREAMING AND THE “YOU CAN DO IT!” ( like in the movie “waterboy” HA!)

It’s the cheering that makes that football player get back out there and give it just a little more effort and I think the same applies for our friends with SN children. When they see the support and they hear the cheering and they hear the “YOU CAN DO IT” it gives them the energy to get up and push a little harder the next day.

Isn’t that great? That is a good friend, taking the time to work that hard to understand what is is like.

Never a dull moment

We have been trying to just live our lives for the last few weeks. Maddie is still on ACTH, but has only 4 days left. She is still keeping me crazy-busy with all of the nursing, eating, playing, and never wanting to be set down. At 29 lbs now, this is a workout.

Last weekend my step-Dad Lance came down from Charlotte to Camp Lejeune to bring our dog and another carload of stuff and to take my mom back to Charlotte. So since Saturday, Maddie and I found out what it is like to get to hang out together all day without the helping hands of my mom and Lance. Brandon’s work schedule is non-stop right now in preparation for the deployment. We enjoyed getting to have dinner with him at night, and to even all get to sleep together on a few nights. The problem with doing that nightly is that Brandon often gets up at five and Maddie usually gets up for a snack and some playtime every two hours or so all night because of the steroids. So their schedules make it difficult for anyone to get enough sleep if we try to do it together.

The week was actually passing fairly easily. I enjoyed getting to try to live on our own again. I even cooked a few meals, which is an interesting task while holding Maddie. We definitely missed my mom, both her company, and all the stuff she does for us. It definitely is nice to have things like laundry, cleaning the kitchen, and having meals cooked all just magically happen without me having to do them! I’m sure it isn’t all that magical for my mom, but she has always been willing to help me in whatever ways we needed, and it is something I am not sure I will ever be able to repay. But we were enjoying our time together, trying to spend as much as we could with Brandon, knowing he was headed to 29 Palms in the California desert for a month of training this weekend.

Wednesday morning we got a phone call from Brandon to let us know his trip had been moved up and that his flight left early Friday so he would actually leave our house at Maddie’s bedtime on Thursday night. This meant his schedule had gotten even busier. But he planned to be home to play and hang out midday Thursday until when he left that night.

Thursday morning, Maddie woke me around 5 am having slept since 9 pm. This was the most sleep in a row in months, and I was shocked but thrilled. But by 10 am, she had already taken two naps, so I thought something must be wrong. I took her temp, and sure enough, it was 99.6 and her heart rate was close to 200 bpm, so I quickly called Brandon to tell him I needed him to come help me pack. We were out of there quickly, headed to Charlotte the long way around passing Chapel Hill on the way in case she went downhill rapidly and I couldn’t get all the way to Charlotte. We had to pack more than just emergency stuff because we were already planning to head this way on Saturday to do her oncology visit this upcoming week. The reason to rush to the doctor with such a low temp is that steroids suppress the immune response, so by the time a fever pops, something can potentially be very wrong, as happened when she on steroids and became septic last time.

By the time we got to Charlotte, after almost 5 hours in the car, her temp had come down. We still went in and saw the doctor and he felt she looked pretty good, so he said just to watch for more fevers or anything else unusual. So we headed to my mom’s, had dinner and got ready for bed. during that time, the onc called us with her counts and had one interesting and puzzling surprise: her hemoglobin was over 17! This is way high and there was no obvious reason. He was going to do some research as to whether any of the meds she is on could cause it and get back to me Friday.

That night, as soon as I got her to sleep, I could tell something was wrong. Even asleep, she was breathing 60 times a minute and her heart rate was above 180. Both of these numbers are high and certainly too high for while she is asleep. So after a few calls to the on-call nurse and doctor, we headed in to the ER at Levine Children’s Hospital. It was actually our first time in the ER, since usually we just get admitted straight to the floor. The ER staff did a great job with most of the bad stuff: starting an IV and getting a urine specimen via catheter. We did question the education of one staff member when she asked if Maddie was in “recession”. She meant remission…..wow. I hope she was just a tech. Anyway, they decided to admit her to observe her. We gave fluids and prophylactic antibiotics. Once the fluid bolus was in, her heart rate came down nicely. Since she had slept so much and been mostly listless all day, she had not had much to drink, and so it seems that dehydration was probably the culprit for the high heart rate.

They ran blood cultures and a urine culture to make sure there was no bacterial infection brewing and kept us overnight. The night was exciting as her vitals continued to be all over the place, which unfortunately can come along with seizures. As always, Maddie was a trooper through it all, but I just so badly want to be able to stop putting her through all that so often. I cannot wait to say good riddance to the steroids and the immune suppression that is just so dangerous in a child whose body has never had a chance to bounce back from 18 months of chemotherapy.

We were released Friday late morning and today we got the news that all her cultures remain negative for any bacterial growth. Even though we made her go through the ringer only to find out she doesn’t have anything horribly wrong, it was good that we got her fluids to bring down the heart rate and re-hydrate her. We can’t be sure until we do another CBC (which we will do next week) but the high hemoglobin reading may have been a false high because if the relatively low amount of water in her blood. We can tell it has come down because she is much less pink in the cheeks and her eyes are less bloodshot.

Brandon arrived safely in California yesterday and we spoke just long enough for him to know Maddie was okay and had been discharged from the hospital. They are in the field most of the month he is there, sowe will not be able to talk (or text) at all. This will be good practice for how tough it is going to be when he deploys on October. Even though we have lived apart for most of the time Maddie has been being treated, we have been in constant contact by phone or text about even the most minute aspects of her care and we have always made all our decisions together. This is going to be very tough for all of us. I honestly cannot even imagine how hard it has to be for him to do what he does.

So we will probably hang out here in Charlotte until Maddie has been off the steroids for a few days so that we are less likely to make any emergency trips back soon. I was quickly forced to see the value of having a good hospital nearby and questioned my choice to move down to Camp Lejeune a little. Hopefully, we will gradually begin to feel more relaxed and possibly open to the idea of going to a closer hospital too. Levine’s is like our second home, so it is scary to think of going somewhere else. Especially when we know the care elsewhere is not as good.

Our choice to move to Lejeune still feels right to me. Maddie is so delayed developmentally by the seizure disorder that it is imperative that we have her in therapy at least 3 times a week with good therapists who we can form relationships with. We had to make a choice about where our “home” was going to be to do this. Splitting time between Charlotte and Jacksonville will not provide Maddie with the type of routine necessary to help her begin to make developmental progress again. If you have never watched your own child regress before your very eyes, you cannot know how absolutely devastating it is. I will do anything and everything in my power to help her begin to make any kind of progress.

The seizures are a little different as we wean ACTH and Vigabatrin. I don’t know if I would say better, just different. I just want them gone, and they are nowhere near gone. We still have close to a hundred daily. That is just unacceptable and we will keep looking for ways to help her.

I keep hoping that sometime soon, this blog will be less medical updates about Maddie and more fun content. I did add a link to her photo slideshow of the beautiful pictures taken by Angela Shea. You can find it if you click on the Photos tab at the top of the page. I just keep thinking the better days have to be just around the corner. We are just hanging on and trying to make the best of it right now.

Love to everyone,
Liz, Brandon, and Maddie my hero