Charlotte truly is 1 in a million. I have the genetic tests to prove it.

As May 9^th approached, I was looking forward to celebrating Charlotte being 1 month seizure free. Last month, so much had happened, we were exhausted. We had 2 seizures and went to Le Bonheur, there was also a friend’s wedding thrown into the mix and Case had a race. Our follow-up visit with Dr. Fulton went without a hitch, and all was well. We even happen to visit on the day that Disney was giving away free toys to all kids in the “Magic Room”. Charlotte and Papaw went and got a doll and a basketball goal and 2 balls! Charlotte loves balls. Thank you so much Disney for your toy give-a-ways, when you have a sick whiny kid, it really does mean a lot to us to give them something to look forward to, it gives our kids something to help take their mind off the medical procedures going on. We go back home and life is good and is chugging along. May 24^th passes, and again, we are seizure free! There was a small scare for about 2 days, but a new prescription to help calm C down and some Motrin to help with any POSSIBLE fevers, and we got over that small hump. Then, on Friday June 7^th, I get a phone call from Dr. Fulton. HE called me personally, not the nurse.

On Fridays, I usually don’t leave work until after 5pm. I am often trying to make up time for earlier in the week and I am extremely exhausted from staying up late and getting up early. The joke around the house is “you can sleep in on the weekend”, except that doesn’t happen either because someone has to get up and keep the baby on her usual 7am medication schedule. On this particular Friday, I am walking out the door from work about 4:45, and as I am leaving I see that I had JUST missed a phone call. It had a 901 area code so I knew it was from Memphis. I call them back to see who called and what they needed, Dr. Fulton answered. “Gena, I am so glad you called me back. How is Charlotte doing?” I tell him how great she is doing and all the new words she has picked up. I also thank him for calling to check in on us, it is really impressive for the Doctor to call us to talk. He then tells me he wants to discuss the results of Charlotte’s genetic testing. Wait, what? I thought we were done with all of that, I thought we were out of the woods and in the clear? WHAT GENETIC TESTING? I thought all of our results were in. My world of ignorant bliss is shattered in this moment. I am devastated and it ranks right up there with the moment that our nurse walked into our hospital room and told me that they admitted my new born baby to NICU. As soon as the door shut behind her, I squalled. As soon as I hung up the phone with Dr. Fulton, I squalled and drive the long way home trying to find my composure. 

I am still not sure what to tell people. I have mixed feelings about all of this. 

Here are the facts. Charlotte has a frameshift mutation on Chromosome 2 of her SCN1A gene (I have the SPECIFIC location but most of you aren’t interested in that). This gene codes for the proteins in her cells that help to regulate the action potential of her brain cells, specifically sodium.  Your brain works by using little bitty electrical charges. These charges are generated from the charges on specific ions: Sodium, Potassium are 2 popular ones that our brains like to use. When you get an EEG, these little electrical charges are what they are measuring. In normal healthy people, there are proteins in the membranes of our brain cells that regulate these charges, similar to a gate. When needed the allow the charges to come in and out. Charlotte is missing some of these little protein gates in her cell’s membranes. Without these little Sodium gates to regulate the charges in her brain, the charges go haywire and you she gets an electrical “storm” in her brain (a seizure).  She is actually the only person ever tested to have THIS specific mutation. This is known as a “Sodium Channel deletion”. Case and I are going to have the same genetic study done to see if either of us have this same mutation. I PRAY one of us does. If we do, that means a better outcome for Charlotte. If neither of us does, and this mutation is hers alone, the Doctors don’t even know what to tell us. Right now, they can only compare her to children with a similar mutation when gauging her outcome. Those children range from normal with occasional febrile (seizures associated with fevers) seizures, to the kids you see in wheelchairs staring off into space(profoundly disabled having 100’s of seizures a day which medication can’t control). The fact that she is responding to her first line medications is a BIG plus for her future outcome. The fact that she is so far advanced from some of her peers is also a good indicator of a positive future outcome (she already says about 30 words, at 10mo old). The fact that she is learning new things every day is a good indicator of a positive future outcome (she understand the concepts of puzzles although she doesn’t always get them right. She knows where her hair is, eyes, ears ,nose and mouth.). The more days we can go being seizure free, the more seizure free days we will have and the better her outcome (likewise, the more seizures she has, the more she will continue to have and a poor outcome will result). Should her seizure pattern change or she continue to have seizures through her medication that will not be  good news. The possibility remains for her to have developmental delays because she is having too many seizures. So we have to stay on top of her development and keep her learning as much as she can, as quickly as she can. The possibility exists for her to grow out of this, or really; just adapt better. It isn't very likely. For now, these results don't change her diagnosis (Benign Myoclonic Infantile Epilepsy). She will be a candidate for gene therapy, when it becomes available. There are some promising things going on with Muscular Dystrophy and gene therapy, but they currently aren't doing much in the way of Epilepsy. She will be grown before that will be a serious consideration. That is about all we know until we return to Memphis on July 22. Those are the facts, the good and the bad. The facts are far simpler than the emotions this stirs. 

From this point on, my emotions go absolutely crazy.

I now have exactly what I was looking for, a cause. I always imagined that I would feel relieved after finding our cause for her seizures, I am FAR from relieved. I spend every moment of what little free time I have researching what this all means. When I got off the phone with Dr. Fulton, he asked me if I had any questions and I said no, I told him I would later after the new sunk in and I would call him back. A week goes by and I look up and familiarize myself with everything there is to know about SCN1A gene mutations. The week after that I spend in a physically sick state of depression. I read all of the horror stories on the internet, just as Dr. Fulton had instructed me NOT to do. All of this information encompasses me. Story after story of kids that were “perfectly normal until their 2^nd Birthday”, I am sick. Kids that have passed away from SUDEP (sudden unexpected death in epelipsy) nocturnal seizures. My relationships suffer. My productivity at work suffers. My marriage suffers and last but not least, my relationship with my own daughter begins to suffer. How sad is it that I am so hung up on these test results that I am having a hard time enjoying the good moments that I have with my baby. I can’t enjoy them for the fear that they may be my last good moments that I have with her. I cry every single day, for 2 weeks straight. I am already grieving a future that is only probable (how silly). I grieve the daughter I wanted: sleep overs, swimming parties, river days, vacations, prom, dates, dances, college, marriage, and grandchildren; verses the one I have which complicates all of these things, if they are even possible. I grieve these things, and at the same time beat myself up for feeling this way, how horribly selfish of me. I am embarrassed for myself. It isn’t like Charlotte can help the way she is. She is what she is, and in the words of Lady Gaga, she was “born this way”. I feel bad for feeling this way, I am ashamed but still very sad. It is really weird feeling.  I go a read up about these kinds of things and realize I am normal, many special needs parents go through these same feelings. I am not alone, that helps but isn’t a cure for my own sadness. I contact our nurse to set up a phone conference with Dr. Fulton. I am armed with a long list of questions; none of which I actually ask him once he returns my call. I am just short of breaking down into tears when he calls me back. I waited all day, forgoing lunch and even waiting as long as possible between bathroom breaks.  I apologize for taking up his time to call a worked up mom who did exactly what he had told me not to do, I read the internet. I toss all of my questions to the side and I tell him, “Please tell me the good things about Charlotte. Tell me how amazing she is and how she is far superior to some of your other more handicapped patients. I did what you told me not to do, I read the internet and I now have one of Charlotte’s feet buried in her grave. I am sorry, I need your help.” He chuckles, but he takes me seriously, he goes on to tell me basically everything I already know (good and bad), but it just seems different hearing it from the expert. He leaves me with “she is doing well, but we still just don’t know. So long as she keeps on doing well, and her seizure patterns don’t change, life is good”. I am now content. I go home that day and take Charlotte out to eat. She loves going out to eat, she loves seeing all of the other families and the different atmosphere. We have a great time. We follow it up with having fun all weekend. I gather myself up enough to realize that nothing else matters than her happiness. Sickness or health, so long as she is happy, all is well. I can’t do anything to stop the seizures, but I can make her happy. Thank god for my Daddy. He finally pulled me off to the side and gave me a big hug, I sobbed my eyes out on his shoulder. It was father’s day, I was supposed to be his support, not the other way around.  This was exactly what I needed this whole time, someone to hug me while I just let it all out. I am not a big touchy feely person, but every so often, I just need a hug and cry too. 

I am still unsure what to say about this publically, if I should say anything at all. I have told most of the family by now, but I am still not sure what I want to say to my friends. Nothing is “official” until it is “Facebook” official, so I haven’t mentioned it publically yet. Silly to say that on a public blog, but so few people read this, I am betting that only the people who are truly interested in Charlotte are still reading this blog at this point anyways. Do I announce my daughter’s difference at the top of my lungs so everyone knows, what are the implications of that? Not everyone is as accepting as others and people may treat her differently if they know she is different. On the other hand, I don’t want to keep Charlotte’s condition a secret either. I don’t want her to ever feel like the way she is something that needs to be hidden. I think she would be a great example for others with children going through a similar situation, and being an example of Epilepsy could help raise awareness locally. Our family loves Charlotte no matter what, but the rest of the world isn’t always so forgiving. If we announce her condition from the tree tops, will people be afraid to spend time with her, and be her friend. Sadly, yes. I would be lying if I didn’t say there were moments when I was afraid of my next moments alone with her. WHAT IF SHE HAS A SEIZURE? Other people will feel the exact same way. HA…..well isn’t this funny. It sounds just like the thoughts and feelings our family might have if Charlotte came to us and told us she was gay. I think I will take a lesson from the gay people I know , and follow what they have taught me. The gay people that walk around with a sign tattooed on their head that says “I’M GAY, LOOK AT ME, I AM DIFFERENT, BUT I STILL EXPECT YOU TO NOT ACT LIKE I AM DIFFERENT, BUT I AM” seriously annoy me. Why does your sexual orientation need to be my business? I don’t care. On the other hand, the people that I know that are gay but are living their lives like they have some horrible secret to hide, are just really sad. You can’t even ask them about it. I think I am going to take the same approach with Charlotte, at least until she is old enough to decide how she would like to handle her difference. I am not planning on parading around with a sign tattooed on my head that says “MY DAUGHTER IS DIFFERENT, HER RECORD SOMETIMES SKIPS”.; but if people who are interested ask, I will tell them what is going on. I think that is a good decision for now. 

I still have mixed emotions and feelings. Being a planner, asking me to “just live for today” does not compute. I can’t help but worry about what Charlotte’s future holds. I try not to think about it and instead focus on teaching her something new, EVERY DAY! Some days are great, some are very challenging. Just yesterday she had 4 small seizures; but it was past her nap time, and I have a feeling these new molars coming in are giving her a harder time.  I can’t help but worry. I really hate giving my baby all these medications, but our alternative is worse. I imagine I will do battle with myself about this for a very long long time; maybe even the rest of my life.

Post Diagnosis

When we left Le Bonheur, we had a diagnosis and a plan. Charlotte’s daily meds were increased and we got an increase in her emergency medications. As far as I was concerned, now that we had a diagnosis and plans, what was going to happen? My baby is healthy and happy and no more HOSPITALS! We are done; we got what we came for. We go back for a follow up appt with Dr. Fulton in the middle of May. All is well. We can now wash our hands of this “seizure” business.

In less than 2 weeks (on April 23^rd) from our visit to Memphis, Charlotte had another tonic-clonic seizure. At this point we have had so many of these seizures, I have already forgot the details about this particular one. I don’t remember the time or circumstances of the seizure. I do remember greeting the Ambulance and seeing our usual EMT staff. “Hey guys, it’s us again” they are disappointed to see us. “Ah man, not again”. Yep, sorry guys, but at least we have a plan now. Charlotte seized for about a half hour before her second dose of Diastat stopped her seizure. Since we now have a seizure plan in place, we no longer have to stay multiple nights at the hospital doing medical tests. As soon as Charlotte wakes up from her seizure and drinks some fluids, we are released. In less than 8 hours, we are back home. I was disappointed she had another seizure, but relieved that just a call to Dr. Fulton and we had increased her meds once more, along with a new prescription for more Diastat.

After dozens of Neurologists told me that, “Nocturnal seizures are possible, but very unlikely. You don’t have anything to worry about.” I was still uneasy about night. I am no longer a betting girl on, “it just rarely happens”, with Charlotte’s 1 in 500,000 chances of having her seizure disorder to begin with.  Dr. Fulton totally understood and even suggested that Charlotte sleep with us in our bed so we could be alerted to nocturnal seizures. Past about 5 months old, Charlotte never could seem to “settle down” between Case and I, so she rarely co-slept with us past 6mo old. She seemed to toss and turn and fight us all night long. At 9mo old, most babies have settled down in their own cribs and are out of mom and dad’s room; but Case and I were too paranoid of nocturnal seizures to take Charlotte out of our room. While Charlotte didn’t sleep well next to us, we still kept her in our room. At this point in time, Charlotte was sleeping in her pack n’ play next to my side of the bed, I was too paranoid of nocturnal seizure to put her in her own room in her crib. Then, on May 9^th at 5:45am, one of my worst fears happened. Charlotte had a nocturnal seizure. We normally don’t wake for another hour. Thank GOD for those 6^th senses that Mom’s obtain once you have a baby. At 5:30, Case’s alarm went off, but none of us got up and out of bed. Even Charlotte continued sleeping. At 5:45am, Charlotte let out a very breathy but short cry. It was just enough to wake me up, but not enough to cause me alarm. I thought she was just starting to wake and stir for the day, she will either settle back down and sleep a little longer or get up and babble some before hollering at us to get her out. Sometimes I am lazy and let her just play for about 20mins or so in her pack n’ play while I work on waking up.  On this particular day, I notice that at   30 seconds after her initial cry, I hear her just barely struggling to breathe in a very heavy rhythmic pattern. This was a very specific rhythmic pattern that I am now very familiar with. I realize that something isn’t right. Within the first 3 jerks of her generalized tonic-clonic seizure, I went from asleep to wide awake and sweeping her out of her pack n’ play and administering emergency meds.  I wish I had this on video because my actions were impressively super hero like; I had some serious lightning speed. I still thank my guardian angles for keeping my ears and mind posted on baby monitoring mode while the rest of my body slept. Thank God for that mom 6^th sense, otherwise it would have been about 6:30am before any of us knew she was having a seizure. Had we not paid attention, we would have kept on sleeping and she would have seized for at least an hour before anyone had woken up. That would have been a SERIOUS EMERGENCY! By 6am the ambulance was at our house again, this time, we had a new set of EMT staff that was not familiar with Charlotte. It did not go nearly as smooth has earlier visits. 30mins later, as we are pulling into HSV Ped. ER, her seizure stopped. Once the logistics of emergency seizure procedures settled down, I was in total freak out mode. Nocturnal seizures are possible and I just HAPPEN to not be totally dead to the world asleep when she had one. Had her seizure been just one hour earlier, she could have seized for hours before we were awake enough to know what was going on. Blood work was taken to check her medication levels and the tending ER physician came in to talk to us. She starts off with the usual questions, “did she have a fever?”, “Is this your first seizure?”. To avoid the whole gamut of follow on questions that I am now so familiar with, I start in just telling her, “Charlotte has Benign Myoclonic Infantile Epilepsy, this is her 4^th seizure and we just got back from Le Bonheur about a month ago. Her tending Neurologist is Dr. Fulton. There didn’t seem to be a trigger for this seizure, other than her next medicine dose was supposed to be about an hour from the time she had her seizure.” The tending ER physician is a little perturbed that we don’t have a “local” Neurologist. It is far easier for our local ER to contact a local Dr than to have to call another doctor, 2 states away for records. She asks why we didn’t stay local and  I tell her that we really did like our local Neurologist, but when C had her 2^nd seizure, she was on vacation and we had to go to UAB. I also told her that by the time we would have went to see our local Neurologist for a follow up appointment from our VERY FIRST seizure back in FEBUARY (at this time, it is May), we had already been to Memphis and had a diagnosis! It is no offense to our local Dr, it is just that she is the ONLY one and so busy, she really didn’t have time to take us on. The tending ER physician then tells us that another Neurologist is in town (Dr. Bebin) and it might be a good idea just to have a local Neurologist for future ER visits. I can see now where this might be beneficial, so I get the newest Neurologist’s information and obtain a referral from Charlotte’s pediatrician to see Dr. Bebin. In less than 6 hours, Charlotte has recovered enough to show the ER physician that she is able to drink fluids, and we are released.

2 seizures in less than a month, I am devastated. What is wrong? Is her medication not working? What if this happens even earlier in the morning when we are all in a deep sleep? I assumed everything was going to go well once we left Memphis, what has happened? We can’t live our lives with these medical emergency type seizures every 2 weeks. I will get fired from my job! Our family literally can’t “live” like this! Will we ever have a normal life? I really start to worry that we will never get to do things like a normal family, like go on vacation. Is this our new normal for the next several years until Charlotte “grows out of it”.

Case and I put our heads together and start working on safe guards for the house. I realized that during this last seizure, I could barely hear Charlotte’s labored breathing over the noise of the ceiling fan and air conditioner in our bedroom. We make a bold move and decide to put Charlotte back in her nursery, with the audio baby monitor, only because it is way louder than our own ears. We crank the baby monitor up so loud; we can literally hear her breath while she sleeps. From this moment on, I never sleep soundly again, and neither does Case. Even today, nearly 3months later, we are exhausted tired.  Every time C coughs, rolls over, sighs, babbles, or shortly cries out in her sleep; we wake up. The audio monitor is great, but we quickly learn that we are so high strung from the last incident, that we are giving ourselves far too many false alarms. Next, we buy a security camera. BINGO! This thing is AMAZING. I can see exactly what is going on in Charlotte’s room without even getting out of bed. The only bad thing is that even on the lowest setting, the screen for the video monitor is still very bright for me. I sleep best in a pitch black room. My comfort for a dark room is a small concession to make for the reassurance of the video monitor for Charlotte, so I adapt. A few weeks later we purchase an Emfit “Epilepsy Monitor”. It is basically a sensor that is placed under her mattress that monitors her movements. SUPPOSLY if her movements are repetitive and fast enough, this thing is supposed to trigger an alarm, assuming we were not paying enough attention to her usual initial quick cry before a tonic-clonic seizure. Since Charlotte is technically underweight for this particular sensor, I am not putting a lot of confidence in this thing, but another line of defense is always nice. My night stand has now been coined, “Baby Command Center”.  I start reading up on other families in similar situations and quickly realize that we are not alone in our efforts.  In a time when most parents are starting to wean away from all of the baby monitors and worries of (SIDs) sudden infant death, we can’t quite relax. SUDEP (Sudden Unexpected Death in Epilepsy) is a real concern for Charlotte since her seizures do not stop without medical intervention. I can’t tell you a single morning that I have woken up since February when I have been confident that I would find my baby alive in her crib; the exception being the mornings that she woke before me and was babbling or crying. I may even be guilty of just lying in bed until she wakes, just to be sure. Even a crying baby in the morning is a sweet welcome noise these days. A number of mornings when Charlotte has slept past her usual morning waking time, I have been a bundle of nerves going into her room to check on her. From what I hear from other parents, this feeling will continue for the rest of my life. I start to wonder how our future is going to be. 2 seizures a month, 1 a month, how many? Will she ever get to spend the night at friends’ houses? Go to the skating rink (flashing lights)? Dances (flashing lights)? I had signed her up for swimming lessons right before her seizure, but they wouldn’t accept her after her seizure. Will she ever get to enjoy swimming like other kids? Ride on rides at the fair? Will boys want to date her if they know she has a seizure disorder if she doesn’t out grow this? Is this something she is going to have to consider when she wants to have her own children? At this point, Case and I arrange our family dinner dates around how close we are to a hospital (somewhat a joke, but with a serious twist), what about a vacation? The worry overwhelms me sometimes……….I am new at this. I get lots of comments from friends and family saying things like, “I don’t know how you do it”, or “I can’t imagine what it is like”. I have been told that all this is a lot to take in, but one thing you have to remember, I am a first time mom, so I don’t know any different. To me, this is normal. The only child I know is Charlotte, so her wants and needs are all I know about children. If you have read this far, thanks, I hope you find us interesting; but please don’t feel sorry for us, there is no reason. This is just our life. I have been told it is different from most, but it is ours and to be honest we wouldn’t have it any other way. It is our way. After 5 seizures (one unconfirmed by medical Dr’s), our family has changed so much. From a failed induction, c-section, time in the NICU, 5 seizures, multiple ER visits and ambulance rides, MRI’s, UAB, and Memphis; our family wouldn’t be the close loving family it is today without some of the hardships we have faced. We are here for a reason, doing the best we can. We hope for the best for our future, but we will work with what cards we are given. I love my husband more today and I have ever loved him before. These events have really given us the opportunity to show our true love and affection for one another. I couldn’t have survived any of these events without Case. He is an amazing Daddy to my little girl (who is a total Daddy’s girl) and a wonderful husband to me. I can’t imagine life without him and I know that no matter what our outcome is for Charlotte’s condition, he will be by our side. Charlotte is one lucky little girl to have such a great daddy. J

We arrive in Memphis at Le Bonheur Children's Hosptal........now what do we do?

It has been a long time since my last post, I apologize. There has been a lot going on, so trying to find some time to update our blog, after Charlotte has fell asleep, is hard to come by.  Before I update you guys on the latest news, I guess I should finish out our visit to Memphis and Le Bonheur. I think I left off somewhere……where we had just pulled into town and could see the hospital from our car.

Our 1^st stop in town is to check into our room at the FedEx Family House. Ahead of our visit, I went online and scoped this place out, it looked really nice but I still wasn’t sure what to expect. Is this going to be like a bed and breakfast, or a hotel? What all will they provide us in our rooms? Is this going to be camp style where we have to bring all of our own towels and sheets, or is everything down to the shampoo and soap provided? I just didn’t know what to expect. The photos of this place were beautiful and I can tell you that after being there, the photos don’t do this place any justice. The FedEx house is ran on donations and is free to all families who have children that are being treated at Le Bonheur. The FedEx house is beautiful! It looks like a relaxing mansion in a sea of busy city streets, ambulances, and hospitals. There is an immaculate back patio with green grass for kids to play, grills, and picnic tables. When we were first booking our trip, I almost elected not to stay at the FedEx house. Case and I have good jobs and have the means to pay for a hotel room, I didn’t want to take away a room from a family that was truly in need. After staying at the FedEx house, and our experience at Le Bonheur, I am so glad that we did stay. It was an incredible burden off of our shoulders knowing that we had a comfortable “home like” atmosphere to hang our hat, away from a hospital room. While Case and I can finically afford our own room, having everything already arranged, and having the FedEx house worry about our room (instead of a for profit hotel that is looking to get us in and out as quickly as possible) allowed us to focus more on Charlotte and less on incidentals. Not only is the FedEx house a free place to stay, they occasionally have local restaurants and business sponsor meals for the families staying at the house. There is a kitchen area and a STOCKED pantry with snacks that are available any time, day or night. We also had free hospital transportation, 24/7 service. This was a blessing when our first night stay we had to get up at 4am the next morning to check in at the hospital. Free washers and dryers. Those came in handy after Charlotte decided to redecorate her PJ’s and Pack n’ play sheets! We met other families going through similar situations as ours. The staff at the house was amazing and allowed us to stay a few more nights so I could recover from food poisoning. They gave Charlotte a new toy every time they saw her in the hallway.  

Our 1^st night in our room was very nice. It was like staying in an expensive hotel room. Modern décor, and every amenity you can imagine.  We checked in at 2pm on Sunday. We then went and ate dinner at the Famous Gus’s Fried Chicken in Memphis. Gus’s was very good. Their fried chicken was EXACTLY like my great-grandmother’s who’s fried chicken I hadn’t eaten since I was about 7 years old. The Chicken was great, the side dishes were only fair. The atmosphere was eclectic. I would visit them again.

We had to be at Le Bonheur to check in at 5am Monday morning. Our 7mo old baby is sleeping through the night like a champ, so we weren’t sure what to expect, with getting her and ourselves ready for several days in ANOTHER hospital. We are hopeful, and in one way excited and relieved to be here, but we are less than thrilled about the idea of spending more nights in those metal hard framed hospital cribs. I have come to really hate those hospital cribs, they seem so….institutional. They look like something out of a creepy 1950’s children’s lobotomy hospital. Today’s modern hospital beds have foot petal controls to adjust the height and tilt of hospital beds. They are made of plastic and are loaded with electronics. Baby hospital cribs are NOTHING like adult beds. Baby hospital cribs are literally metal cages. It is miserable trying to keep a drugged baby from falling over and banging their head on the hard metal bars. Why is there not a better solution?!? I have digressed…….back to my story…..

So we arrive at bottom floor at the hospital, and the security officer directs us to the hospital admissions. We assume we are the only people checking in, but really, we were just early. I go back into an office, leaving Case and C in the waiting room. I pay our copays and give them all of our information. When I come back out, the waiting room is FILLED with other families and children. I hate to say that while C was the youngest kid being checked in that day, she seemed to be one of the most capable. Remember, she is only 7 mo old. The kids waiting to be checked in were from all over the US, mostly from the south and Midwest. While there were a small handful of kids that appeared normal, most of the kids that were being checked in had OBVIOUS disabilities. I start to freak out a bit. My daughter is the youngest baby here;  I am looking at these kids in wheelchairs staring off at the ceiling and not responding to their parents requests for attention, is this what my child is destined for? Am I looking directly at my family’s future in about 8 years? Is this what happens with kids with seizures? I tense up and become nervous. Another little girl comes in with her family. The parents are about the same age as Case and I, but their daughter is older than C. She is the only kid that morning that is close to C’s age, we later find out that she is just a little older than 2. I am a little relieved, she was a precious little girl, and C was enamored with her.

C is the first kid in the first group called back to escort us to our rooms for the next 5 days. Le Bonheur wastes no time in getting stuff done. No sooner than we were directed to our hospital room, it was time for C’s MRI. She had an MRI done at HSV, but not one following “Epilepsy Protocol”. Since I had already went through the MRI experience with C before, I knew exactly what to expect. I was now in familiar territory and was beginging to relax a bit. All the children younger than about 5 get their MRI’s performed first since they have to be put under general anstesia to keep them still, which means they have to be fasting. Our last MRI experience was FAR from fun. In HSV, we were not first in line for an MRI, despite C being only 6mo old and having to fast. It was nearly 11am before Huntsville Hospital got my baby into the MRI. She was irate and starving. This was NOT the case at Le Bonheur. We were #1 in line. Sticking a baby with an IV is never fun, but after 3 other hospitals, I am nearly used to having to hold C down to get stuck. It isn’t fun, I am just used to it. Once the IV’s are going, they let me carry C back to the MRI. I walk her into a dark room with this big canister looking thing. The staff working the MRI tell me to hold on to C tight, she is going to go limp really fast and when she does, set her on the table. They gave her Profuol (sp?) however you spell it….the same stuff Michael Jackson was taking to help him sleep. That isn’t the most comforting idea to a mom, especially since it hasn’t been long since his passing. The MRI is suppose to take about 45mins, so Case and I go to the Café to eat breakfast. We are there about 10mins when the little 2 year old girl’s parents walk in, following directly in our footsteps. While C was in her MRI, she was getting prepped for hers. We eat, and go directly back to our MRI waiting room. I am tense. A little while later, the parents of the little girl walk in behind us. We are the only 2 couples in the waiting room. We start chatting, we have made our first set of new friends, their daughter is Mila. An hour passes and I start to get restless. I thought this thing was only going to be 45mins. About that time, Mila’s parents get called back to come greet their daughter. WAIT, C was ahead of her, where is my baby?!?!  My momma bear comes out and I start trucking it back into the MRI prep area to get some information. As I am walking back, I see C’s nurse in the hallway and they escort me to her recovery room . C is stoned but happy to see us and wants to be held. We later find out that her MRI was normal. Good news is always good.

In an effort to make a VERY long story short, I will cut out a few details. After our MRI we go back to our room and its time to get C hooked up to the EEG machine. She will be “tethered” to this machine which is monitoring her brain activity, as well as 24/7 video monitoring; for the rest of our stay. We have no clue how long we are going to be here. It could be as short as 3 days, or as long as 7. I am with C the entire visit. Case stays with me all day and helps me out. Once she goes to sleep for the night, he goes back to the FedEx house and I stay in her room, being videoed and watched the entire time. There are things to help pass time. Our room is right beside of the “playroom”.  When C isn’t tethered to her EEG in her hospital room, we are tethered in the playroom. We can’t leave these 2 rooms. Over the next 5 days, the playroom becomes the new hangout for parents and kids trying to burn off energy. There are toys for all ages, but they are a little lacking in toys for C’s age. The older kids are in hog heaven with stacks of video games and gaming systems. It takes us all of about 8 hours to get over the “don’t let the baby crawl on the hospital floor, its gross” rule that I have. We watched a lot of cartoons. Despite being out of town guests, we also had lots of visitors. The hospital Chaplin would check in with us every other day or so, and the nurses would come in our room every few hours with a NEW TOY! Yes….a new toy like every 4 hours. Way cool! C got her first baby doll from a sweet nurse who heard her crying her eyes out while we were trying to get all of the EEG sensors glued to her head. For any normal kid/adult, having to sit still and let them glue some sensors to your head is no big deal. To a baby, this is the end of our world. I would rather hold C down while they work an IV in her than to have to hold her down as they glue 25 little sensors to her head. I am still greatful for the wonderful EEG tech who was so sweet to us and didn’t get upset that C was upset. She was understanding and persevered under the stress. It was very stressful for ALL of us! Along with 24/7 EEG an video monitors, I am given a “red button”. This is called an “event button”. If I think C is acting strange, or having a seizure, I press the button. It alerts the staff to pay closer attention to her EEG at that time, and it gets recorded and time stamped for the Dr to review. Part of this epilepsy screening is to not only see what is going on with the kids, but also to help “reset” the parents. Before C’s seizures, (and even during her very first ones), she would be flopping in the floor and we would be writing it off as normal behavior. Look, she is ok, she stopped….eventually, I am sure she is fine. Now that we had several medical emergencies where she had seizures that didn’t stop, our “normal” threshold has TOTALLY changed. While we were at Le Bonheur, C had about 7 seizures. 2 of those I caught with the “event button” and they literally looked like she was just cold and shivered. I am now freaked out every time my kid shivers…..this is totally different than I was before. This is the hardest part about these seizures, and talking with other parents,with  similar children, they agree. How do you know what is normal anymore. Is your kids behavior a result of their condition, their medication; or are they willfully taking advantage of your ignorance and caution and acting out. This is hardest…even as of today. What can be helped and what can’t. You don’t want to punish your child for behaviors that they can’t do anything about, but you don’t want to have unruly children that take advantage of their situation.  I have a new appreciation for parents of Special Needs children. I thought I knew what it was like to help care for Special kids after helping my Grandmother and mom out with my Aunt who has Downs, but until YOUR baby is the one with a special need, you have no idea. The other seizures that we caught were provoked by a strobe light during our photosensitivity test. C failed miserably, we have a trigger, we are oddly thrilled. Our entire time at Le Bonheur, we have only ONE doctor. He is there for the entire week and he knows C like the back of his own hand. He is AMAZING! We meet with him daily, as our schedule permits, NOT HIS. Should we be napping or eating, he waits ON US, and comes back when we are settled. This is a stark difference from the other hospitals we have been in. Before, if you missed the Doctors rounds, forget finding out what was going on with your child. You maybe waiting in your room, hungry and tired , all day, just to see what the Doctor says. This is NOT how our visit was at Le Bonheur. Dr. Fulton was amazing, and his kind spirit and love for children is obvious in his work. On day 3, we had a diagnosis. Benign Myoclonic Infantile Epilepsy.  C is “expected” to grow out of this, pending genetic testing. We have some other genetic tests to go, but so far, the Doctor doesn’t expect anything unusual. We are thrilled and he asks us when we would like to be discharged. “Wait” I said, “you mean you are ASKING us WHEN we want to be discharged?” He said, “yes, You can actually stay as long as you are comfortable.  You are welcome to stay and keep hitting your event button to learn what is and what isn’t normal behavior. I will review all of your events to help you figure out what is normal for Charlotte and make you more comfortable”.  Despite the hard plastic like, hot makeshift bed, I elect to stay another night. That night Case left for his race, and my parents arrived about 1pm that next day. Since my mom is 2^nd in command for C (she watches her while I am at work), I really wanted her to have the opportunity to meet C’s Dr and ask any questions she might have. On day 4 we were discharged and we packed up all of our things, said “Goodbye and Good Luck” to all of our new friends, and headed back to the FedEx house to stay the night. After checking out, we went to Burger King. We don’t know our way around Memphis well, and were hesitant to just “venture out” with a young baby, so we just stuck with something that was reliable and close…..bad decision. 12 hours later I wake up, heaving in the toilet in our room. I try to be quite with a sleeping baby just on the other side of a wall, and my exhausted parents who had JUST driven down the day before……are soundly sleeping. I am sick, real sick. I try my best to suck it up, but by 9am, I was losing fluids so fast, I was worried about dehydration.  To shorten another long story, I will say that I am so thankful for the FedEx house, allowing us to stay an extra night while I recovered well enough to go home. I paid a visit to Baptist Medial Hospital and got fluids and great care. By the next day, I wasn’t feeling 100% but I was feeling well enough to not get sick in my own lap on the drive home. Hahahah.

We arrive home, unpack and update friends and family on our visit. In my mind, Epilepsy is over. I have a diagnosis and we are taking meds, we are done and I don’t have to  worry about this anymore until she is about 3 and we look at taking her off her meds.Right…….I mean, we know what is going on, an we have medication……that’s it…..right…… Life is good…..right…….hmmm I still have a lot to learn……..

I want to end this part by saying how much we appreciated the hospitality of the FedEx house. It meant a lot to our family. I know the people mentioned in this post will never read it, but I still want to extend all of my gratitude to Le Bonheur for taking such immaculate care of my baby. I can’t believe I even accepted some of the treatments from other hospitals. I shouldn’t be pushed around and I do matter, I am this baby’s mom! I know her better than anyone! Thank you guys for not getting too mad at me the night that I fell asleep IN THE CRIB with Charlotte. Hahahah….The nurse woke me up, not because it was a problem for me to sleep with C in her crib, but because they couldn’t see her on the video monitors. Hahahahaha.  I want to thank all of the volunteers that helped too. We had so many toys by the time we left to come home, we weren’t sure how we were going to pack them all. You guys were awesome and so sweet, the toys really helped comfort my baby when everything else around her was metal bars and institutional blankets. God leads us down paths for reasons……and I am here. I don’t know why, but this is my location for now. I trust and believe that I am at this point for a purpose and reason. Our future remains to be seen. I am so thankful for being lead to Le Bonheur. When I look back at how we got to this point, it was honestly the work of little angels in our path, helping to work out and guide our way to what was best for us. Thank God Case and I paid enough attention to listen.