Purple Bear

For any friends and family keeping up with Charlotte, you probably noticed I have went through a few name changes on my blog here lately. I think I have finally settled on the perfect name, “Purple Bear”.

I never intended on keeping the blog up past Charlotte’s birth. I had no need to. The purpose of the blog was to keep mine and Case’s distant family in the loop with my pregnancy and Charlotte’s birth. Our blog was never intended to document our diagnosis or medical adventures. Those things happen to other people, not us. 

Charlotte’s 1^st seizure was on Dec. 29^th. I was home alone with her when it happened. I was an ignorant 1^st time mom, and I didn’t want to be that mom that freaked out every time my kid ate dirt. Since Charlotte began acting normal after about 2 minutes of being very VERY stiff and still, I wrote it off. I did take some photos of her face and sent them to Case, “hey does this look funny to you, she is acting weird”.  She was 5months old. 

Charlotte had some big milestone come right after that 1^st unknown seizure. She got 2 teeth, she began pushing her chest up 90 degres from the ground and attempting to combat crawl. We had our 6mo doctor’s visit coming up, this was big stuff to report to our doctor. I was so excited to tell him how amazing my daughter was, I totally forgot to mention “that time she acted funny”. We had no clue Charlotte had any types of Epilepsy. We had no clue she had a genetic mutation and we knew NOTHING about pediatric hospital stays or what an Epileptologist was. We had no clue our child was going to have some special needs. 

Feb 2013 was Case’s  1^st Valentine ’s Day to attempt a prize for his little girl. Charlotte was still to little to really understand, but I was super excited. I couldn’t wait to see what love, care, and thought he would put into a loving prize for our baby girl. Charlotte LOVES balloons, so I just KNEW Case was going to come home with a big bunch of balloons for Charlotte to oogle over. I had “my” heart so set on balloons for Charlotte, that when Case came home carrying a bear, I was a little disappointed. When he walked in the door holding the bear for Charlotte and roses for me, I kept looking around. Surly he bought some balloons, Case KNOWS she loves balloons and besides Charlotte isn’t old enough to form attachments to objects. No balloons. Despite no balloons, I was thrilled that he thought of us. The bear was cute. It was purple holding a pillow heart that said “Love”. Charlotte liked the bear, but as I mentioned earlier, she was still too young to really form any attachments to objects. As quickly as she examined the bear, she threw it down. She was more interested in running  around in her walker. 

2 weeks later Charlotte would have her 1^st generalized seizure that she wouldn’t come out of on her own. She seized for about 25 minutes. She was given multiple doses of Valium and Ativan before it stopped. From this point on we kept our over night bags packed. The seizures were so frequent, we kept luggage with the overnight essentials to grab and go, when the next event happened. We lived in a state of heightened alertness just waiting on the next seizure. Is it now,….what about now…..or maybe….. NOW…..ok well maybe in the next 5 minutes…….or it could be RIGHT NOW and we don’t know it. We didn’t know what to do and felt helpless. After the 1^st hospital stay with a baby, we became pros at packing a diaper, food (you can’t rely on the hospital to bring you milk or food in a reasonable time when the baby is crying), and toys. Charlotte didn’t have a ton of stuffed animals, so her Purple Valentine’s day bear always made the cut into the bag. Stuffed animals pack easy. ANYTHING to help pass the long days and nights confined to a hospital room. That purple bear has followed us across multiple states, and has been hugged through multiple blood draws and needle sticks. Charlotte has cried into purple bear, hugged purple bear and chewed on his nose so much that it is torn to shreds. Much later we would realize that purple is the awareness color for Epilepsy. Case and I often feel helpless to Charlotte’s seizures. We are both problem solvers, and not having the ability to help or cure Charlotte is really hard on the both of us. We want to actively “DO” something but we can’t. We can’t stop the seizures and when they happen, we just have to hold her, comfort her, and love her. Love is the only thing we can do for Charlotte. The purple bear’s arms are bound to a pillow with the word “love” stitched on it. Our love is often the only thing we can give her, and what binds us together and comforts us when we have nothing else. Our love for one another helps us to keep from allowing Epilepsy to rip us apart. Without love holding us all together, we have nothing.  1 Corinthians. 

When I was debating on the name change of the blog, I wanted something that reflected the crazy journey that we have been on this past year. Nothing was really striking me as significant. I then remembered Charlotte’s favorite bear that she sleeps with every night, Purple Bear. Little did we know that Valentines day before, the seizures really gained some speed, that Charlotte would form such a strong attachment to this bear. Little did we know all of the amazing little significant symbols this bear would come to mean to us. I find it interesting  that out of all of the stuffed animals (you get quite the collection going once you have been to the Ped. Hospital a few times! Hahah)that  Charlotte has, she chose to form her attachment to purple bear. All of her other animals are about the same size, and most of them more cuddly; but she chose that one. She cuddles it at night before drifting off to sleep, and HAS to carry purple bear by his ears every morning to the breakfast table. She loves her purple bear.

That purple bear holds so many meanings to Charlotte and for our family, I thought it would make the best title for our journey though Charlotte’s diagnosis. 

Hoped you enjoyed my rambling thoughts. :)

Seizure #6

I believe my last blog post was all about how much “FUN” Charlotte’s birthday was…..time to catch you guys up.

Charlotte was a PILL on Sunday July 21^st. We are still trying to learn how her seizure affect her, but I *think* that about 15 hours following her Valium dose, she gets something like a hangover. Since we didn’t give her a dose of Valium until about 5pm on Saturday, she was so difficult about 10am the next day. Clingy to the point that I couldn’t change my own clothing, if I sat her down, she cried. I couldn’t distract her with anything, I couldn’t comfort her with my words, she HAD to be touching me; ALL DAY LONG. This is out of character for her on a normal day. Case couldn’t pacifier her and hold her, it HAD TO BE ME. Usually, Charlotte actually prefers Case. My mommy side LOVES being the one she wants to hold her; but at some point I have to change out of my PJ’s or use the bathroom. A shower would have been nice. I knew we had a long drive to Memphis the next day, so I was very worried how much of a pill Charlotte was going to act.

Saturday (Birthday) seizures, Valium at 5pm. Sunday, MAD BABY. Monday Charlotte wakes up, HAPPY BABY talking away at her purple bear in her crib. We load up and had an uneventful car ride to and from Memphis (in 1 day. That is a pretty big deal with a little guy).

On the Monday following her birthday, July 22^nd, we were due for another follow-up with Dr. Fulton at Le Bonheur. I can’t say enough amazing things about Dr. Fulton and his staff! He worked with us and allowed us to show up to his office on a day and time that he normally doesn’t see patients’. Try that with any other doctor. Even more amazing, Dr. Fulton did just ask us how Charlotte was doing and walk out of the room, spending only 30 seconds at best with you and your baby. NO. Dr. Fulton spent the next 4 HOURS with Charlotte. Let me say that again, 4 HOURS. He talked with us about Charlotte’s development. He wanted to know all the new words she had learned. He wanted to see her mad walking skills and let her walk around the room. He checked her reflexes and talked to Case and I about our genetic study. He also gave us a plan on what to expect next, if our current plan of action doesn’t seem to be working. We talked about Charlotte’s diet, and her failed Birthday party. The entire time he is just monitoring her. I noticed about 2 hours into our visit that Charlotte was having some myoclonic jerks in Dr. Fulton’s office. Having your kid actually exhibit symptoms while they are at the doctor’s office is like winning $200 off of a lottery scratch off card. It isn’t unheard of, but rarely happens. I saw one and said, “Oh my goodness, did you see that Dr. Fulton?”, he said “yes, I have seen a few so far”. Case and Greg couldn’t even see them or tell they were happening; that is how in tune Dr. Fulton is with Charlotte. Utterly amazing! Once Charlotte settled down some and her meds kicked in, she didn’t have any more myoclonic jerks that day. The rest of the time in the doctor's office we spent getting mine and Case’s blood work done for our genetic study. We are still hoping (although not super likely) that one of us has the same genetic mutation that Charlotte has. We won’t get the results back for nearly 2 months. We also discussed Charlotte’s diet and we now have a nutritionist who monitors Charlotte. Charlotte is on a “Glycemic Index/Modified Atkins” diet for seizures. All of Charlotte’s food has to be measured (for serving sizes) and the carbs calculated. Meat, cheese, butter, heavy cream, and eggs are free game. Most fruits and veggies have to be given with caveats. Watermelon, bananas, pineapple, fruit juices, bread, rice, pasta, cereal, and Milk (the toddler staples) are all cut from her diet. Right now, this diet is easy to follow. Charlotte LOVES ham and cheese, and she isn’t old enough to have peer pressure and outside influences. Now is a great time to try “diet therapy” to see if it works, while we can strictly control what she eats. I now have a food diary for Charlotte and I add up her carb intake every day.  The Modified Atkins diet is WAY easier to follow than the kids who are on straight Ketogenic diets. The Ketogenic  diets for seizures are SO strict that you even have to monitor what kinds of soap, lotions, cosmetics, ect that you use since your skin can absorb carbohydrates. I hope we never have to get that strict with Charlotte!  Up to this point, it has been over 2mo since Charlotte’s last generalized seizure and all I had done was cut out her bread, pasta and rice! I was so hopeful that this diet would be our ticket to a seizure free life!

Dr. Fulton increased Charlotte’s meds, and we scheduled a follow up appointment.

 We are on track to be seizure free for 3 whole months if we can just make it to Aug. 9^th! This would be the longest time EVER she has went without a generalized seizure since she was 5 months old.

All was well until Tuesday July 30^th. I was out with lunch with Case. His phone rings, he looks at the number and then answers. He is very serious and concerned. He doesn’t say ANYTHING at all for about 2 minutes. My anxiety starts to creep up, but I try to write it off as “work stuff” since the call was on his work phone. Just to be sure all was well, I grab my phone to make sure no one was trying to get a hold of me. I had no missed calls. Case is still really quite for a phone call. I forget what he said when he finally started talking to the person on the other end of the line, but from the few words I caught, something had happened to Charlotte. My heart sank, I was so hopeful it was his work calling him. Knowing the nature of her seizures, I knew that by the time someone was in a position to call either me or Case, the situation was either under control, or she was already loaded up in an ambulance. My intuition was right. Charlotte had another seizure.

Case was completely heartbroken. You could literally see the life come out of his face and you could watch his heart sink before your eyes. He hung up the phone and I was expecting to dash to the Pediatric ER, but that wasn’t the case. Charlotte had a seizure, but it only lasted 30 seconds at the most, and the seizure quit on its own. I could tell that it was all Case could do to hold his emotional composure during lunch. He was taking this really hard. He wanted to go home and check on her. I couldn’t, I have no PTO from work anymore. Case has plenty of sick leave and he volunteered to go home and check on Charlotte. My mom did a great job handling the situation. Charlotte was outside pushing her little walker when she fell over and started having a seizure. My mom was right there when it happened and scooped her up an wisked her into her nursery and placed her on her changing pad. She grabbed her emergency meds and by the time she turned back around, Charlotte was out of her seizure and looking at her Memaw. Sherry wasn’t exactly sure what to do, so she gave Charlotte the emergency Valium anyways. If Charlotte gets her emergency Valium and doesn’t need it, it doesn’t hurt her, only makes her loopy. While she was loopy following the Valium, she had fun the rest of the day playing with the neighbor kids and walking around the house. 

It sounds bad, and the seizures are horrible, but it could be worse. I tried to remember what the Doctors were telling us, that should her seizures get worse (more frequent, she doesn’t come out of them on her own, she doesn’t respond to emergency meds, or they begin to interfere with her learning) then we are going to have some serious problems. While Charlotte had a seizure today, it lasted only 30 seconds. Her previous seizures all lasted 30 minutes plus! Charlotte was able to come out of todays seizure on her own, in the past she had to have multiple shots of Valium AND Ativan to stop her seizures. We were only 10 days shy of being seizure free for 3mo. When she had her last seizure, they were coming every 2 weeks (and at $250 per ER visit, + ambulance rides they were also becoming very expensive). Despite todays event, I honestly feel that we are starting to find our right path for getting Charlotte as seizure free as possible. I think that the low carb diet is working. She only had enough “sugar stores” to fuel this seizure for only 30 seconds. Your brain uses sugar as its fuel. If you have no sugar, your brain doesn’t have any easily accessible fuels to use. Your body will then begin to burn fat as a fuel source, but fat is much harder to access than quick easy carbohydrates. Without quick easily accessible sugar to burn, your brain then becomes too lazy to try to pull from your fat to feed the seizure. Seizure stops.They require a lot of energy and Charlotte ate like a pig following this seizure.

Once the seizure was stopped, Charlotte insisted on seeing “Day day” (Dale), then resumed her happy normal (but loopy) self. 

I called Dr. Fulton’s office and told them about the seizure. Her Keppra level is increased to 15mL per day (a normal adult dose maxes out at 10mL a day) and we are having blood work taken in a week to check her levels. Infants are notoriously bad at absorbing liquid medications, so Dr. Fulton suspects that we could throw as much of this stuff at her that we want, but she would still only absorb a certain amount. If Keppra isn’t going to work to control her seizures, we are going to have to try another medication. I am not excited about trying a different medication. Nearly every other anti-seizure med has some pretty rough side effects that I am not looking forward to. Prayers all goes well. 

Our Tally 

1.       Dec. 29^th (5mo old)

2.       Feb. 24^th (7mo old –Said “Mama” in the hospital for the 1^st time during a blood draw)

3.       March 24^th (8mo old – stood up for the 1^st time in her hospital crib)

4.       April 23^rd (9mo old)

5.       May 9^th (9mo old)

6.       July 30^th (1 year old)

Charlotte's 1st Birthday Party

Today was Charlotte’s 1^st Birthday party.

Date: July 20^th

Time: 2:30- 4:30

Charlotte was not present for the 1^st 2hours. …. 

I planned C’s party to a T! I knew exactly how many guests I had invited, how much food to prepare, how many treats I would need; the whole 9 yards. The party went off as a success. If I had to change one thing, I would have had a few more chairs. Other than the chair issue, all of the kids had a great time. The water slide was a big hit. Kids literally slid down that slide for half of the day. The other big hit was the snow cones. I just barely had enough flavor syrup for all of the snow cones that were made. People stuck around until the very end, just because they wanted to.  Pretty cool.  Nearly every hamburger and hotdog was eaten, and most of the cake and treats were gone too.  The neighborhood kids showed up, and we collected over 75 stuffed animals for the children’s hospital. $180 was collected for the FedEx hospitality house along with a big sack of snacks. The confections were awesome, and I even hired a professional photographer to come and take candid photos of the party. From all outside appearances, the party was a fun success and our guests were having a great time. Go team Dalton! The kids had so much fun on the water slide and eating snow cones, while the parents raved on how excellent the cake and food was. It seemed perfect.

 On the inside, we were one seizure event away from a disaster. 

About an hour before the party, Charlotte had spotted me getting things together. She noticed Case and I working outside to get the slip-n-slide, kiddie pools, and blow up water slide, together for the party. She wanted desperately to be a part of the action. She whined and cried all morning until I finally relented and stuck her in her swim diapers and plopped her in a kiddie pool, a full hour before guests were to arrive. I sat beside of her in a rocking chair to supervise her; being that helicopter parent. While things have been going great for the past 2.5mo, I didn’t want to risk today being the day she had a big one. So beside of her I sat as she happily splashed in the kiddie pool. She was happy and content for a few minutes, and then she started acting odd. She would just stare off, expressionless. She jerked a little, and she kept dropping her head down to her chest. It took me a few minutes of this behavior to realize that something wasn’t right. I picked her up and although she was super mad that I had plucked her from her pool that she was having fun in, I could feel her having myoclonic jerks at about one every 2-5 seconds. I assumed she was just tired, and since I was about 30mins late with her meds, I wrote it off as a fluke. Late with her meds and tired, that sounds like a good excuse. No sooner had I got her settled in her pack-n-play asleep, guests began to arrive. I told everyone she was napping and everyone was so patient and kind. I didn’t tell anyone any details. “She had missed her nap time and had JUST fell asleep. She slept for an hour this morning about 10am, so I bet she will be back up any moment now.” I strategically planned our party time just to avoid running into nap time. I went in to check on her several times. My mom was lying on my bed watching her sleep and to make sure she didn’t have a nocturnal seizure. An hour passed, she wasn’t just sleeping, she was snoring! About 3:45, guests had to start leaving. I was so frazzled from that morning activities, and trying to monitor Charlotte while entertaining the guests that I had TOTALLY forgot to cut the cake. 

Traditionally, we would have cut the cake after C had eaten her cake, but what do you do when guests are leaving and the guest of honor isn’t there? I cut the cake and began passing out slices. I went outside and started treating kids with snow cones. The Kids were having a BLAST playing on the waterslide and eating snowcones. Our friends and family were so nice and polite, waiting patiently and making small talk while we waited for Charlotte. Finally, 2 hours after Charlotte had fell asleep, she woke.

 When I saw her for the first time, I had sugar plum day dreams of her being excited to see me and ready for whatever party activities we could fit in, in the last 30mins of the party. I was hoping that the last few standing guests would get to experience the wonderful, intelligent, pleasant little person that my daughter is. After all, part of the reason for throwing the big shin dig was for people that hadn’t seen Charlotte in a long time, could see how well she is doing despite her epilepsy. I wanted our family to see the Charlotte that I get to experiance every day. I wanted everyone to get to experience her amazing little personality and look past her health problems.  Within the first few seconds of seeing my baby, I could sense that she wasn’t happy about being awake. All of my sugar plum dreams were shattered. Charlotte was NOT happy and that is a understatement. I tried everything to make her happy. I gave her a bottle, fed her, put her down to play with her toys. All she wanted to do was for me to hold her. Even when family and friends would come up to talk to her, she would just turn and look away. She never smiled for the camera. No matter how much I tried to please her, she just whined and cried the entire rest of the party. She was not the beaming example I was hoping she would be. In a desperate attempt to make Charlotte happy, I resorted to the kiddie pool. Despite our earlier problems, I was hopeful that after a 2hr nap, and all of her medications being current, she would be able to enjoy her pool in the shade with the other children. I took her back outside. After about 5mins in the kiddie pool, she began having seizures again. This time when I picked her up, her myoclonic jerks were much stronger than before, and more frequent. I swaddled her in a towel and rushed her to her room, expecting a generalized seizure. I changed her out of her swim diaper, and my parents came back into her room with me. She talked to us and played a little. My dad tried to calm her down by reading to her. She had several myoclonic clusters that were very strong. I told my parents that it is only a matter of time before she has a big seizure, if I don’t do something. I went and made her a bottle and gave her some of her liquid Valium that I have to prevent a general seizure. It worked. About an hour later I had a clam happy baby with no jerks. She was a little stumbly and loopy, but content and enjoying having us with her and play with her. 

By the time she had calmed down, the last guests had left.  Case and I were left feeling exhausted. He and I were both a bundle of nerves expecting her to have a seizure all day after the events earlier in the day. We were completely spent.

We still are not exactly sure what caused her smaller seizures the day of her party. We recently figured out that blue pools are bad, so even though we had her kiddie pool in the shade, it still could have been a trigger. Case swears he is getting sick and that Charlotte is too; and that was the cause. Other than being clingy and needy, she isn’t acting sick. Some of my other family claimed that the party was just too much and having so many new things and people in her house was just more than she could handle. Possible, but she was having problems that morning before anyone arrived. My parents claim that she has just grown so much, that she has out grown her dosage. Her current medication dose was supposed to work for her up to 30lbs. She is only 23lbs now. Someone also mentioned her teething.  I think that everyone would love to point to a cause or reason, but I am starting to believe that sometimes, there just isn’t one.

 My heart was completely broken. Epilepsy took my daughter’s 1^st Birthday party away from her, and there was nothing I could do to stop it. All I could do was hold her. She never ate her cake, and we still have wrapped presents sitting in our living room. She couldn’t even enjoy sitting in her little pool. I am thrilled all of our guests had a great time, but the one person that I wanted to have more fun than anyone was asleep for the entire party. While I was hoping my daughter would be a shining example of normal for all of her friends to see, instead Case and I got a hard reminder about the long road we have hoed in the past year. Every seizure incident flashed before my eyes yesterday as I held her jerking in my arms, away from the other kids and family. My heart sank. This is only the beginning of her being isolated from other children because of her seizures. It feels horrible.

Lessons learned- no matter how much planning, I can plan on expecting the unexpected. After several weeks of being incident free, I get a big reminder that my little girl is still battling this and how important it is to keep her on her diet and medication. If a baby has “stranger danger”, don’t subject them to a room FULL of strangers. Even though I HATE giving my baby girl doses of Valium, it works. We avoided an ambulance ride and stay at the ER yesterday because of her medications. At least we avoided "the big one", for now....

Happy Birthday Charlotte, I am sorry your birthday didn’t go as well as expected. Mommy and Daddy love you no matter what.