We're home

and doing well :) Jayden was discharged yesterday afternoon with a new medication added to his current two, in order to help decrease his seizure activity. The attending neurologist (who was awesome BTW) told us that he did need to have an additional medication added immediately and then it could be changed if needed once his new neurologist runs any tests she needs to have in order to get him on the correct medications and the best dosage. We also have to bring him back sometime this week for another EEG, more than likely a video EEG. He's been compfrtable at home for the most part, although he does have little moments where he looks like he thinks he's about to have a seizure so he just wants to lay down. I'm pretty sure he's still having some activity, but it is not as bad as last week. Last week was pretty awful. He would scream and cry for help for 6 or more hours. And during this time, he could not eat so he was very miserable and so were we.

When we got home yesterday, Jayden was pretty out of it b/c the new medication makes him very drowsy, but when he saw that Santa came, he ran over to his gifts which included lots of learning toys, some action figures, legos, a board game, a powerwheel, and a new Spiderman Helmet. We expected him to run straight to the powerwheel and not care about anything else but we were SO WRONG! He did run up to the powerwheel, but only to grab his spiderman helmet and beg for us to open it. He refused to open anything else until the helmet was free from the packaging and strapped on to his head. Then he continued with ripping his gifts open. Classic Jayden :)

Merry Christmas

from the hospital :(

Jayden continued to have seizures throughout the day yesterday and was extremely miserable. We had to use his rescue medication on Thursday to stop seizures but they started again 2 hours later. Yesterday evening we decided to bring him in to the ER to see if they could stop the seizures. Well the seizures stopped on their own by the time we were called back, but Jayden was still very wobbly and uncoordinated so they decided to admit him and try to get him stable until his appointment on January 4. They started a new medication and he did well through the night and was doing great this morning. He even had the cutest surprise visit from Santa. The Dr examined him and was happy with his progress. She wanted to order an EEG but the soonest it can be done will be Monday. She decided that instead of keeping him here until Monday, she'd let us take him home so we can enjoy the rest of Christmas at home. We would have had to bring him back on Monday for the EEG and we were fine with that. Just as they were finishing up his discharge papers, he had a seizure. The Drs came in and tried to wake him (he immediately fell into a deep sleep), but he wasn't responding, not even to pain. So they paged the neurologist and she ordered more IV meds and monitoring. He will be re evaluated at in 3 hours. Right now he is resting. It's bittersweet. We were THIS close to heading home. However, I would have been very upset if he would have been discharged only to get home and start seizing again. He's where he needs to be right now and the hospital staff has made sure that his Christmas is just as enjoyable here as it would have been at home! So far Santa has brought him a Handy Manny cell phone, Mr. Potato Head, a musical train (with tracks!), and Candyland! What's funny is that these are ALL his favorites!! Funny how Santa got that all right huh? Thank you Lord. I know you are listening.

Double Edged Sword

Yesterday evening, I rec'd a call from the nurse practitioner that Jayden was supposed to see. Unfortunately, we had to cancel the appointment b/c Tricare wouldn't approve the office visit or any tests that she ordered since he was not an established patient with any of the affiliated Drs. The medical insurance obstacles. Well, she wanted to see if there was any way that she could help over the phone, as she had heard about Jayden having complications and no neurologist to turn to for help. She asked for some detail and thought really hard on how she could help and what else I could do to get him through until January 4. Unfortunately, the Dr that he's going to be seeing is out of town and won't return until January 4, so that's why he cannot be "worked in" on her schedule, however, the NP told me that she'd make some calls to see if he can possibly get in to see one of the partner Drs prior to the appointment on the 4th. She said "No promises", but I'm truly not asking for promises, just for someone to show some concern for my son and to actually help us. And she's doing just that.

We talked for about 20 minutes and after giving her a brief history along with the current medications and dosages, we both came to one(possible) conclusion: The Trileptal could be causing the seizures to get worse due to the extremely high dose he's on since it's being used as the sole seizure medication right now. I always wondered if that was the case b/c there have been multiple occasions when Jayden would have seizures immediately after taking his medicine. I do not plan to stop this medication without first seeing the new Dr (neither did the NP encourage me to stop it) because I know that could very well make matters worse.

Today has been a pretty bad day for him today. He was having seizures this morning so I put him in bed for a nap to see if that would help. He only slept for an hour (he usually sleeps 3-4) and he came downstairs and immediately started having the seizures again. He's very uncomfortable right now and I'm just hoping we can avoid the ER tonight...

We'll be home for Christmas...

And probably miserable :(

Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.

A wonderful day =)

While his seizure activity is still extremely high (he's had 7 in the past 3 days and we ended up in the ER again on Friday night), today he has been seizure free and behaving so well!

This morning, I noticed a spark in his eyes. Life in his face. I kept looking at him trying to figure out what about him looked so different, but the only thing it was was that his face was suddenly filled with life. Filled with life as opposed to having a drugged out look. Sad, sleepy eyes and cheeks hanging low. Zero life in his eyes. Today, I saw a face that I haven't seen since his birthday and birthday party on Dec 4. I didn't realize it until I saw it today. And his little personality just shined today. He helped to clean up. He took directions so well. He understood and comprehended things that we didn't think he'd known well before this seizure activity started. Everything he said today, it was said in sentence form. No babbling or screaming while playing with his toys. Instead, he was repeating every thing that his talking Spiderman toy would say. We also caught him singing a song from Polar Express. Once he noticed us watching and smiling, he got bashful though :) We also were brave enough to take him out to Target knowing full well that all of this could change in a brief second right in Target's parking lot. But he walked into Target and got into the basket and sat there like a big boy. He's usually one to ask for every thing in sight and I had to stop at the video game section to grab a game for my nephews for Christmas. To get there, we had to pass the dreaded toy section. Jayden looked on very quietly, and even when we passed up the huge Toy Story shelves, he never screamed "I want that! I want that! I want that!" I seriously looked at Mike and said, "Wow, I'm impressed!" It's as if he knows Christmas is next week. LOL. We got into the checkout line and he saw his favorite piece of candy and he said "Mommy, I want this." He'd been so good in the store so I told him he could get it and he actually put it on the counter so the cashier could ring it up. Normally he pitches a fit if anything leaves his hands to be rang up. She rang it up and gave it back to him and he said "Thank you. Merry Christmas." WOW! I couldn't wipe the smile from my face. I was so proud. All evening, he's been soooo good. He even ate all of his dinner.

He hasn't gone to bed for the night yet, so I do know that this perfect day could take a turn at any unpredictable minute. But for now, I'm logging off so I can go look into those beautiful, sparkly eyes of his before he goes to bed for the night. I want to soak it all in because days like this have not been happening often around here! Thank you to all of my blog readers who have been sending prayers, advice, links, etc. I appreciate it all :)

ETA: I do feel that this is just proof that Jayden is definitely capable of doing well, behaving well, and learning well. The last neurologist told us that she thinks that the bad behaviors and learning issues are just "who he is". I disagree and feel that they are directly related to his seizures b/c when they were controlled, he was ok. Today was that ray of sunshine that tells me that he will be okay.

Always without warning...

We needed to run out to Sears tonight to price some ranges for the kitchen at our property in Jackson. We made sure that Jayden had his bath, dinner, and medication prior to leaving in hopes of avoiding a seizure b/c he hadn't had one all day and we still haven't verged off of this daily seizure road just yet. He was in a good mood. Talking on the phone to Santa and running about singing songs. We got in the truck and he put himself into his carseat. A song came on the radio that both he and I like so we started singing that. When we pulled up to Sears and Mike turned off the truck (causing the song to stop), Jayden told him "turn it on!". When the song went off, we all proceeded to get out of the truck. Jayden climbed out of his seat and walked over to the door so I could get him out of the truck. As soon as he jumped down, he was begging me to hold him. I thought he was just being a little lazy and just wanted to be carried so I joked with him and said "You are half my size. Why don't you hold me?" He kept insisting "Hold me Hold me Hold me!" I didn't pick him up (which is now breaking my heart) so he turned to his daddy and pleaded for him to hold him. Mike held his hand and we continued to walk through the parking lot. Jayden was whining so I reminded him that Santa is watching. Jayden shouted back at me "No!" I asked, "So you don't want Santa to bring you any toys?" He shouted "No!" I said, "Well that's not nice of you so you need to stop shouting at mommy ok?" and he said "Yes ma'am" By this time we were in the store and he just kept whining. I reminded him that we were stopping for ice cream after the store so he needed to behave. Then he looked up at me with the saddest eyes, filled with tears, and said "Mommy, I scared!" This is always our clue that he's about to have a seizure so I immediately picked him up and tried to help him to slow his breathing b/c hyperventilating can bring on a seizure. He relaxed for a minute but then the seizures started, right there in the appliance section of Sears. The associate gave me a seat and I had to take off Jayden's jacket and his shirt right there in the store b/c he overheats when he has the seizures. He screamed and grabbed at the back of his head and yelled "Mommy!!" It was awful. We couldn't leave until the seizure was over, so I sat there consoling Jayden and my husband was able to get help from the associate (while taking several breaks to come check on Jayden). The associate offered a glass of water b/c when the seizures stopped Jayden was pale and sweaty. Unfortunately, he never became alert enough to even drink the water. We did get him to answer some questions though and to tell us his name, so he was conscious. We carried him out to the truck and put him in his seat and he said "Mommy? I sleepy." I told him he could go to sleep and he sure did. It was his bedtime when we got home so I decided not to arouse him and just tuck him in. He was awake by then, but very very groggy, and he was able to help me take his clothes off. He told me goodnight and I love you. As always, the monitor is on in his room.

This is our life. It can go from being a very good day to being a horrible day in a split second :(

MRI and new neurologist

Jayden had his MRI done this morning and this time they used contrast so they could get a better look at his brain. The last MRI was done without contrast. He was such a trooper and even went back with the anesthesia nurse without a fight or fear. They told us that he did well but we have to wait to hear back from the Dr for the results. That part sucks :(

After the MRI, we went to Children's Hospital emergency room. Why? Because yesterday I left a message with his current neurologist about the daily seizure activity. Instead of getting a call back from their office, the hospital's patient relations representative called me. She said "We advise you bring him to Children's Hospital." I was so confused by this that I never asked why, so I just took him. Those ER docs were just as confused as we were, but they refused to release Jayden until something was done to keep him from having to endure daily seizures until January 4th which is his scheduled appointment with the new neurologist at Children's Epilepsy Center. After almost 2 hours of waiting (and several phone calls placed by the ER docs) we have an appt to see the nurse practitioner at Children's Hospital next Wednesday and an on call neurologist agreed to advise us to raise his dosage of his current meds b/c, simply put, the seizures have to stop before damage is done. Keep praying for Jayden!

Journal post

Jayden had a cluster of seizures this morning, right after taking his meds and eating breakfast. Breakfast wasn't anything new or unordinary so I'm sure it wasn't an allergic reaction induced seizure. I calmed him down on the couch and he went into a very deep sleep for an hour. He woke up and has been alert and talking, but has not moved from the couch since this morning. I've tried coaxing him off the couch to ride his bike or play some games but he won't move, and it has been 4 hours since the seizure. This is a child that is usually climbing the walls, so he cannot be feeling like himself.

I left a message for the current neurologist, at 9:30am, stating that my son has been having seizures EVERY DAY since Sunday of last week. I'd consider that an urgent matter. It is now almost 2pm and I haven't received a call back from the office yet.

Heartbreaking update :(

My poor, sweet Jayden is just not doing well lately. We saw the signs. I guess I should say we expected this to happen once the current neurologist screwed up his medications. A little refresher: Jayden was on 2 different seizure medications prior to being seen by this current neurologist (he also very frequently had to have a 3rd added when his seizures were out of control) and he was still having at least one seizure a week, from what we were seeing. Well her treatment plan was to wean him off one of his meds and start another. He reacted to the one she started him on and she (not so happily) agreed to take him off of it but never replaced it with anything. So now, he's on only one seizure medication. One that has NEVER worked for Jayden on it's own. She does have him taking 1/2 of a tranxene at night to calm his spikes that occur right before he falls asleep, but nothing to protect him throughout the day. At his last appt with her, which was over a month ago, she told us that she fully expects the seizures to return. She also said some other rude things to me and about my child and simply suggested a behavior evaluation and a psychiatrist. She was supposed to call me back that same day with referrals but it's over a month later and I haven't heard a thing from her.

For a few weeks now, Jayden's teacher has been meeting us outside at pick up time telling us that he is just not behaving well at all. He's hitting other students, hitting the teachers, and spending most of his day in time out for not listening. If he's spending most of his time in time out, then he's not receiving his therapy. I know they try hard with him, but I also know that Jayden has not been cooperative at all lately. Last week, his teacher told me that she's concerned b/c it's a personality change. We've had a very difficult time at home with him as well. He is going completely backwards. Honestly, I feel like we are back to those days where we were so frustrated with him and were beating doors down trying to find out exactly what is wrong with him. He no longer makes eye contact. He screams at the top of his lungs again. He breaks EVERYTHING that he comes in contact with. He cannot sit still for even a second. He's not sleeping well. I've seriously considered begging a Dr to give him something for ADHD. It's gotten just that bad and this is EXACTLY where we were prior to the epilepsy diagnosis. Yesterday was THE WORSE.

I had to work. Mike had to work. My mom had a Drs appt and my dad is still recovering from a knee replacement. My job is wonderful in that I can bring Jayden with me anytime I need to. What's not wonderful is Jayden's behavior lately, whenever he attends. He does not listen to anyone, including me. I had a talk with him before we left and he agreed to be on his best behavior but I knew something was wrong b/c he was clenching on to his blanket and on a good day, Wayne is usually left in his bed all day. Then as we walked out of the door Jayden said "Mommy, I scared." Oh man. This is what he says before a seizure. I texted Mike and warned him that he may have to come get Jayden as soon as he gets off. We got to work and Jayden played for about 5 minutes before he started whining. Then he asked to sit down. Then his eyes got glassy. Then he started the high pitched screaming. His siezures were started. One little girl in childcare said "Oh he's really attached to you!" and the other childcare workers were just walking past him as if there was nothing going on. His seizures are not your typical falling to the floor and jerking around violently. His are quick tensing of the body and loss of equilibrium. He gets extremely dizzy so he clings to whatever is close to him. In this situation, it was the table. I was trying to calmly move him and ask the other workers to help me, but they didn't realize that he was seizing and that this was serious and I needed help. When I said he was having seizures they'd look over like "Really?" but then do nothing to help. I couldn't waste time explaining to them b/c I had to help him so I carried him and grabbed a kindermat and slowly laid him on the floor as he screamed b/c laying flat while you are very dizzy is not easy. He hyperventilated for a minute and I just hugged him real tight until he calmed down. He screamed and whined for about 15 minutes. I ended up moving him to the baby nap room and putting him in a crib. It's cool, quiet, and dark in there. He actually laid in the crib and said "Wooo, thank you!!" Bless his heart! I let him lie down for a few minutes and after about 10 minutes he was climbing in and out of the crib so I knew he was ok. I took him out and he sat with me for a while then asked to go play with the bigger kids (I was watching toddlers). I agreed, but I warned the girl that he'd be extra difficult and probably wouldn't listen well so she could send him back to me. He immediately went over there and started throwing toys, hiting kids, and just not listening, He couldn't make eye contact. It was awful. This was not Jayden at all. Everyone always comments on how well he listens, but yesterday that wasn't happening. The girl sent him back to me. I tried putting him in time out (which he usually goes without a fight) he slapped me, kicked and screamed at the top of his lungs and fell out all over the floor as if something was wrong with him. It was awful. I tried to get him to look at me and he wouldn't. We went in the bathroom so I could try to calm him down and he attacked me. Who WAS this child?! My heart was broken :( He proceeded to break two big toys in the toddler room by throwing them down on the floor. He was OUT.OF.CONTROL. He was being very mean all day. Mike got there to get him just as I was giving him his lunch so we agreed to just let him finish his lunch then he can go home with Mike. He finished his lunch and put on his jacket and I tried explaining to him that Mommy would be home a little later and he was going home with Daddy. He wasn't listening. Instead his eyes darted from side to side. He was pulling his arms away from me. He moved his body all around and paid no attention to a word I said. When he walked out and I closed the door behind him he screamed and hollered to the very top of his lungs. I heard him screaming all the way to the parking lot. I felt sorry for Mike :( I later found out that the entire scene looked as if Jayden was being kidnapped. He kicked and screamed and clawed at Mike. He bit and hit. And when Mike picked him up, Jayden tried to claw Mike's eyes out. Mike couldn't even sign Jayden out, another of my coworkers had to do it. Not only am I humiliated, but I'm hurting for my child. This is not him. He is suffering. I came home and all I could think of was how bad I want to yell and scream and punch out the Dr who has neglected him!! She deserves to suffer the way she has caused my baby to suffer. The way she has caused my family to suffer. It's awful and no one can comprehend how hard this is for us. I'm so glad I have my family to reach out to and to vent to in hard times, but I think that, unless it's your child, you will never fully comprehend the pain and anger that goes into it.

He is certainly back at square one. I know I can look back on this blog alone and see where things were just as difficult in 2009 prior to the EEG findings and started him on the seizure medications. Once Jayden was started on meds for seizures, his prognosis was WONDERFUL. One thing that stands out the most to me, though, are the results of his appts with the developmental pediatrician and the timing of him being started on anti seizure meds. You can read about his first evaluations here and here. And can I just take this moment to say that the second eval post is proof why you should NEVER trust a Dr's opinion over your own mommy instinct. In his "opinion" Jayden was typical and appeared to have no genetic disorder. If you are a followers of this blog, you know that Jayden has since been tested by a different genetics Dr and is missing a piece of a chromosome so he does have a genetic disorder associated with autism. Anyway, those evaluations were done prior to the start of the seizures medications. In August, we went to Florida and noticed strange behaviors so asked for an EEG which came back abnormal. He was started on one medication which was soon increased once the seizures got worse. Then he went back to the developmental pediatrician in June of this year for a follow up. You can read that here. It's in the 2nd paragraph or so, but as you can see, he had made a complete 180. He improved enough to where the Dr no longer felt the PDD-NOS diagnosis was even warranted. Now, though...Now, I believe he would be diagnosed with even more than PDD-NOS. He is right back to where he was prior to the first evaluation. Since he has a history with this Dr, I think it is important for us to followup with her for her opinion on this matter. I'm waiting for a nurse to call me back on Monday to get him on to the February schedule. He also has his first appointment with the Epilepsy Center at Children's Hospital on January 4. It's still a while a way, but it's closer than it was 2 months ago. He's also having another MRI done at the hospital on Tuesday. This was not ordered by the current neurologist (since she believes it's "just who he is" and nothing to do with the epilepsy) but by his geneticist who is extremely concerned with extreme regression and behavior changes. Please keep Jayden in your prayers. Thank you all!

ETA: I want to apologize in advance bc/ I will also begin using this blog as a daily journal now until his appt with the Epilepsy Center. He's been having multiple seizures daily so I need to keep track of them and his behaviors. We are also getting daily video footage b/c I want to be armed with information. I need this Dr to be able to help save my son.

Loving my new job

Not only are the hours magnificent, and the fact that I can bring him with me when I need to (he's coming with me on Saturday), but I am learning so much and this job is actually helping me to be a better mom to Jayden. We are the ONLY gym that requires childcare workers to actually go through ongoing training. So I'm also getting PAID tp attend child development courses and training. So much I've already known, but I cannot begin to tell you how refreshing it is to know that they are teaching the workers about kids and how every kid is different. Don't judge the children by their behaviors. Bad behaviors does not equal bad child. Give choices. Redirect. Intervene. Help develop self esteem. Sometimes, when you've had a rough parenting week, you forget about the little things you could (or should) be doing to help nurture your child. These training classes are grounding me and putting me in a place where I can see what we are missing and what Jayden can use at this time.

Also, I'm making wonderful connections. Tonight I met a lady who used to be a play therapist. She has my email and will be sending me some information for Jayden. She also gave me information for a local autism support group. At this point, Jayden won't be able to attend the weekly support groups (b/c they meet when he's in school) but I can go to meet the parents and make more connections. A friend of mine told me that this may be my calling. I can notice when a child is just a bit different from the others and is trying to fit in. I tend to pay close attention to that child and help to make him or her feel more comfortable for the 2 hours they are with me. Before they leave, there's always a smile where there was once a frown. That alone, makes my time away from home worth it!

4 years old

This should have been posted on yesterday, but I was too busy getting everything prepared for his Spider man party (which was perfect in every way! Pictures coming later).

4 years ago, Jayden, you changed our lives tremendously. You were the single answer to years of prayers. We could not believe that you were OUR SON! We have learned so much from you in these four years. We've endured things that we never imagined we'd have the strength to endure. So many people say that you are lucky to have us as your parents, but honestly, I think we are the lucky ones!

I absolutely adore your personality. You have such a zest for life and you love to make everyone around you laugh. Such a caring spirit. You can tell when someone in the room is not happy and you always make sure to ask, "What's wrong?" or "You okay?". You always want to be sure that everyone is happy and enjoying their life to the fullest, just the way that you do! I love that about you. You never let your medical condition come in between your love for life. You go through so much yet you always bounce back as if it was nothing. You are never afraid to try something new. It's definitely something that you have taught me, to never let anything get in the way of my dreams.

This year, you are totally into super heroes of all kinds, but mainly Spider man. Last year, it was a toss up between Buzz Lightyear and Spidey, but this year you have been 100% Spider man! You were star struck when you saw Spider man at Universal Studios in Orlando this past summer. You were Spider man for Halloween this year. And, once again, you were star struck when Spider man made a surprise grand entrance to your birthday party on yesterday. The look on your face when he arrived on the roof of a truck immediately made his visit worth every cent!

You have come a long way, Jayden. Although you still have a delay in your speech, you can now put your thoughts into sentences on your own. Without any help! This is huge for you! Yesterday, during breakfast and one of your favorite restaurants (IHOP), Daddy tried to help you with your syrup when you told him, "No. I want to do it myself!" We both were so proud of you and we told you so and made a big deal out of it right there in that restaurant. At 4 yrs old, most parents would wonder why it was such a big deal to us. But there's another thing that you've taught us, Jayden...To celebrate even the little things in life.

This morning, you had a bout of scary seizures. You clung to me for help, told me you were scared and pleaded over and over "Help me, please!" 4 years ago, I would never have imagined that I could ever help you the way you would need to be helped. Instead, I could only imagine myself breaking down, crying in a corner somewhere, too weak to help you when you most needed it. Today, I am strong enough to hold back the tears and hold you tightly while reassuring you that is IS going to be okay. I have you and I won't let anything or anyone hurt you. I will fight for you until there is no more fight left in me. You are my little fighter. My brave, super hero. My daring boy. My silly son. My charming little boy. Mommy and Daddy love you forever and always!

Day 30!!!

I am thankful that I am alive and well enough to spend an entire month telling the world what I'm thankful for each day! I hope to see many more blessings :)

Goodbye November, Hello December!

My baby will be FOUR in 4 more days!!!

Day 29

Today I am thankful for my warm, cozy bed and Tylenol Sinus. Still sick :(

Day 28

Today I am thankful for Chamomile tea! I've already caught a cold from the kiddies at work!

Days 26 and 27

I am extremely thankful for my acceptance into Nursing school!! I knew my grades were good enough to get me accepted into the program, but since it's a limited entrance program, I wasn't sure that I would make the cut for next semester, but I did!!

In August, 2005, I had just started my final year in Nursing School. I was on the honor roll and loved my instructor. I was preparing myself for my board exam. I was so excited to finally walk across that stage and receive my degree. My Maw Maw was excited as well b/c she knew how bad I wanted this, yet how long it took for me to be in the position to afford it at all. Then, Hurricane Katrina washed it all away when the waters came in and flooded my city and my school. Of course, life turned upside down after Katrina. 3 moves in less than 2 months, no clothes, no furniture, and miles away from loved ones. It was rough. It was stressful. Then things turned around for us and we adopted Jayden. My plan was to start school again when Jayden was a yr old, but then his health issues surfaced. Finally, this past summer, we realized that now was a good time to "try again". When I tell you that EVERY.SINGLE.DETAIL. worked out in my favor, I mean that!. First off, I contacted my counselor just in time to schedule my entrance exam, as there were only 4 testing dates left before the deadline to apply for nursing school admission for Fall 2011. Also, I was just on time to figure out which pre reqs I needed to retake and to enroll for them this past August. ALSO!! We were able to use my husband's post 9/11 GI bill for my tuition! 100% tuition paid and a $250 book allowance per semester! How wonderful! And as if that wasn't blessing enough, I now have this job and childcare for Jayden at only $3.50 per hour whenever I may need it. God is good!!

Unfortunately, Maw Maw passed away in 2007, so she won't be there to see me wakl across that stage but I know her presence will be felt on that day! I love you Maw Maw!

Day 25

Today I am simply thankful for LIFE! No one is promised tomorrow and I have a handful of friends who are spending their first thanksgiving without a loved one. Learning not to take life for granted is not a simple feat, but I encourage you all to give your loved one a HUGE hug and kiss today before devouring your turkey dinner!

Happy Thanksgiving everyone!

Day 24

Today I am thankful for the knowledge God has provided me with and the lessons I've been taught by my very own son! I started my new part time job today in the youth activity center at our gym and was saddened by some of the comments made (or eye rolls) by the workers towards some of the kids and their behaviors. I am not ashamed to admit that I would have been one of them prior to Jayden. I was ignorant towards the different ways that kids develop and the different issues that many kids deal with today. I now understand that what works for one kid does not work for all. I've learned patience and understanding. And what I've learned most, out of everything, is that each kid, no matter how well behaved (or not), deserves just as much love and respect as the next.

Days 20, 21, 22, and 23!!!

LOL! I've been in San Antonio, TX for my brother in laws wedding this weekend. Since I missed 3 days, I'll be sharing FOUR things I'm thankful for on today.

1. I'm thankful for safe travels to and from San Antonio. 8+ hours in the truck and Jayden did wonderful!
2. I'm thankful for the military appreciation shown at Sea World in San Antonio. Not only did our entire family get in free, but we were also able to save 30% on any food and beverage items (snack foods included!) and 30% off at the gift shops. This made our Saturday very special b/c Lord knows the funds were tight! Jayden had a wonderful time and was SUCH a good boy :)
3. I am thankful for being married into a very wonderful family. I'm blessed to have such loving inlaws. The weekend with them was so enjoyable and I truly missed them when they left to board their plane. We've got to do this again!
4. Today, I am thankful for WORK!! I start my new job on tomorrow morning and I'm very excited to be back in the work force and still have the time to contribute to my photography business as well!

Day 19

Today I am incredibly thankful for the gift of adoption. Without adoption, my husband and I would still be childless, after over 6 yrs of trying to conceive. I can't imagine how much worse my heart would be aching without my Jayden in my life. Today is National Adoption Awareness Day! Make it a great one :)

Day 18

Today I am SUPER thankful for the job offer I received to work in the Youth activity center at or gym! It comes with LOTS of perks but the best one would be the fact that we will save over $60 a month on our gym membership, get an extra 25% off of Jayden's Taewkondo (sp?) classes (an any other classes he participates in), AND the super bonus is that he can come to work with me if I need him to! This is absolutely perfect for our family and our situation. Thank you Lord!

Day 17

Today I'm thankful to have the healing touch of a mom :) Jayden had to have his stitch removed from under his arm today (from his biopsy 2 weeks ago). Some skin had healed over it already so the nurse really had to tug. My poor baby cried and screamed like never before and even continued to cry when she was done (he NEVER does that). I said "Do you want mommy to cuddle you?" and he said, in between tears and sobs, "Yes ma'am" I hugged him and kissed him and he calmed down almost immediately. Sweet boy :)

Days 15 and 16

Missed a day again, sorry! I'm so busy studying for my finals this week and getting prepared to say a final goodbye to my BFF's mom and to head out to San Antonio for a wedding this weekend.

I'm thankful for my patience that I know comes from the Lord.

I'm also thankful for this beautiful weather which will allow me to go ahead with my scheduled newborn session and hopefully get an outdoor picture of the bundle of joy :)

Days 13 and 14

Oops! I missed a day! I was busy the entire day helping my friend move to her new apartment.

So today I am thankful for my YOUTH b/c I can't believe I was able to walk up and down 3 flights of steps for nearly 6 hours in 80 degree weather yesterday!

I am also thankful for financial stability. We are driving to San Antonio later this week for a wedding. As you can imagine, since it's so close to the holidays, it is costing lots of money. I am thankful that we are able to afford the trip though, without having to sacrifice too much.

Day 12

Today I am thankful for forgiveness. Life is too short to hold grudges against anyone, especially the ones you love :)

Day 11

Today I am thankful for the health and safety of my very own veteran, my husband. He served our country for 20 yrs. Going overseas, fighting in wars, and sacrificing his own life for our freedom. It wasn't hard, but he continued on and gave the United States 20 yrs of his own life. Thank you, Mike, and all the other veterans, for your service!

Also, please keep my friend in your prayers. Her mom passed away this morning.

Day 10

Today I am thankful for my mom. My best friend of over 20 yrs is losing her mom :( It was not expected and my heart is hurting for her. My mom called me and told me. I cannot imagine the pain my friend is going through and I pray that God gives her the strength that she needs to get through it.

Day 9

Today, I am thankful for the change in season. Jayden has not been able to tolerate the heat/sun since May. He walked outside a few days ago and when he saw the sun shining onto the porch he looked at me and said "It's hot." I said "No it isn't. Step outside and see." He went outside, stepped off the porch, and held his arms out to the side and said "YAY! I did it!" Yes, baby, you did it!

Day 8

Today I am thankful for the force that reminded me to check my school email tonight. I found out that I missed an exam this morning (the dates on the syllabus are ALL wrong!) so I have until tomorrow evening to make it up. So I'll be studying tonight and hoping that a proctor is available on campus tomorrow morning to give me the test.

Day 7

Today I am VERY thankful for my mom. She is always there with an ear to listen and a shoulder to cry on. I love you momma!

Day 6

Today I am thankful for wine. Yes, wine! It was that kind of day around here.

Day 5

Today I am EXTREMELY thankful for my faith in God!! Jayden had a really scary seizure today in the back of the truck. He's doing so much better now after some rescue meds and a nap. I know God has His hands on Jayden!

Day 4

Today, I am thankful for being blessed with the opportunity to have my photography business featured on the local news this morning! Check it out :)

http://www.abc26.com/health/beautybreakthroughs/

(Look for the vidoe with a picture of a baby in a pumpkin hat)

30 days of Thankfulness

This has been going around the internets lately and, right now, I'm at a place in my life where it would really help if I actually stopped to count my blessings, so I will give this a go. Who cares that I'm 3 days late getting started!?! ;) I'll start from Day 1 though...

Day 1 | I am thankful for my faith in God. It has kept me strong throughout the day to day obstacles we've had to face. Obstacles I never thought I'd have the strength to even live through.

Day 2 | I am thankful for my husband. He is my rock and he is such a wonderful provider for our family.

Day 3 | I am thankful for my health. I cannot imagine how I would be able to go about my day and be able to care for Jayden 24/7 if I did not have my health.


Are you doing the 30 days of Thankfulness? If so, please link me to your blog! If not, well DO IT! :)

Happy Halloween from Spiderman!

This definitely wasn't my first choice in costumes for Jayden but gone are the days where I can pick out the cutest costume for my little guy. He knew he wanted to be Spiderman right away. And since his birthday party will be a Spiderman theme, he can wear it more than once (although I am sure he will be begging to wear it EVERYDAY!). If I'm being honest, I don't like the costume one bit! I hate that the mask covers his entire adorable face. No one will see his beautiful smile. There was a mask for toddlers that only went over his eyes and head, but my husband said it just wasn't authentic Spidey! LOL! So I'm hoping for a costume that doesn't cover his face next year, but I have a boy so the chances of that happening are slim to NONE! I think Jayden will nix the mask anyway once he realizes that he can't get candy through it tonight! LOL! Here's a look back at his previous Halloween costumes...

2008 (1st Halloween, 10 months old)


2008, my snuggle bear


2009, DJ Lance Rock (I made the costume myself!)


And a few pictures from him carving his pumpkin a few weeks ago :)


Have a happy and safe Halloween everyone!!

So...

I couldn't think of a title to this post b/c I still haven't wrapped my mind around all of the new information that was thrown at me during yesterday's appointment with the genetics Dr.

One thing I want to update on right now is that he does not agree with the anhidrosis diagnosis alone. Jayden isn't sweating anymore, so clinically it is anhidrosis, however, the Dr does not feel that it has anything at all to do with Jayden's medications. Instead, he thinks that we need to dig deeper b/c it is possibly being caused by something that we are not seeing. So he's having a skin biopsy done on tomorrow afternoon :( Also, he is being scheduled for another MRI asap due to the fact that his seizure activity increased in May, we noticed the lack of sweat this summer, and he started regressing in April. Please keep Jayden in your prayers.

Anhidrosis

A new diagnosis for Jayden, although I did not catch us by surprise. This summer, we noticed that he did not tolerate the heat/sunlight well at all. My mom was saying that it must be due to this being his 1st summer in Louisiana, but the summers in MS were not much different at all and he did just fine last summer. Jayden avoided playing outside at all costs which made it a particularly long summer for us. The Disney World trip was extremely hard for him and he had multiple seizures and complained about the heat all day. When he went back to school in August, the teacher and her aides noticed the same issue and said that they would start keeping him indoors for recess until the weather cooled. Well, it's cooler now, but the sun still shines so he was still having issues. We ended up changing his schedule at school so he comes home right after lunch. No recess for him :( One of the aides told me that she noticed he doesn't sweat. She was right! I haven't seen Jayden sweat in a LONG time. I know he used to sweat. I immediately went home a goggled it and came up with anhidrosis. But it's a rare condition, so what are the odds that Jayden had it? We started looking in to the medications he was on but the Drs couldn't find anhidrosis as a side effect, although one of his neurologists did raise an eyebrow to the Topamax. However, he has been weaned off of Topamax and still has the issue with the sun.

So today was his dermatology appointment. The nurse did the initial screening and I told her that he doesn't sweat and literally acts like a vampire in the sun, clawing at his skin and screaming. We waited a while for the Dr. He came in and said he looked at the chart and immediately was shocked at the complaint and had to go to his computer to do a little research, but he is certain that Jayden has partial anhidrosis. Partial, because Jayden's feet sweat really bad, but no other part of his body does. He said that Jayden's sweat glands in his feet are over active due to the rest of his sweat glands shutting down. Unfortunately, there is no treatment for anhidrosis. There's no way to MAKE him sweat. The only way to overcome anhidrosis is to figure out WHY the patient has anhidrosis. There are several factors in Jayden's situation: uncontrolled epilepsy, epilepsy meds, and his chromosome deletion. The Dr thinks that if we can get his epilepsy controlled and wean him off of all epilepsy medications then the anhidrosis should go away. The only problem with that is that it will be YEARS before Jayden is in any condition to be completely off of his seizure medications. Before that can happen, he has to be seizure free for 2 yrs and he is no where near that point right now, unfortunately. There is also a small chance that the anhidrosis is a result of the genetic disorder, but that chance is very small b/c Jayden was born with the genetic disorder yet the anhidrosis is fairly new.

The dermatologist is intrigued by Jayden's case and also concerned b/c Jayden is so young. He said that it puts Jayden at an extremely high risk for heat stroke so we have to be very cautious with him. He doesn't want Jayden outside at recess and even wrote a note for school. No prolonged playing outside. Close supervision when playing hard inside (Jayden stops after a few minutes of playing inside and runs to the fan to cool off so he feels when he gets too hot), a ceiling fan in his room (which he already has), keeping him hydrated, and carrying a reliable thermometer at all times. It's an additional risk b/c once his body temperature goes up, his seizure threshold goes down. So the anhidrosis has definitely played a part in making his epilepsy worse. It makes me extremely sad to know that my baby cannot play outside. He got a bike for his birthday last year and didn't get a chance to really even learn to ride it. We tried riding it Saturday but the sun peeked out from behind the clouds and he started screaming :( I feel like he is being cheated out of his childhood and it's not fair.

Today has been a particularly rough day for us. Jayden has been going through some obvious withdrawal issues from the medication we had to stop b/c of the rash. His sensory issues have returned with a vengeance and we are having a very hard time controlling him. Please keep him (and us!) in your prayers. He has a followup with the genetics Dr on tomorrow and I will update if anything comes from that. Until then, I'm off to sit in the middle of my bed and eat a big bowl of popcorn. I think I deserve that much!

A frustrating update

The Lamictal has caused a rash on Jayden's face, which is now very red and inflamed and quickly spreading to his stomach and arms. I noticed this rash 3 weeks ago. It started off looking like a heat rash and it appeared about 2 weeks after starting Lamictal. The Dr warned us that Lamictal can cause a rash and that we were to call at her the first sign of a rash. The internet also states that Lamictal is highly known for causing a rash and if left ignored and Lamictal is continued, it can result in Steven Johnson's Syndrome. Moms, click on that link and then tell me if you would ignore even the slightest hint of a rash on your child's face after starting Lamictal. When I reported the rash the first time, the Dr called and said "Stop the Lamictal and bring him in tomorrow morning so I can look at the rash." Ok cool. So we brought him in, had a very rude encounter with her nurse, again, and then waited for the Dr to come in and glance at his face and say it's not a "lamictal rash" and that it looks "excema-ey". So I left thinking, okay, maybe Lamictal caused the excema b/c Jayden has never had excema before and this rash most definitely started when he started Lamictal. However, at that point, it just looked like a heat rash so I was fine with continuing the meds if the Dr felt it was safe. So we had 2 weeks before his next appt and his Lamictal dosage had increased twice by then. The rash remained on his face and by the day of his appt (which was Friday) it was more prominent. Also, he had been having some pretty bad behavior issues. So bad that his teacher expressed her concern b/c he was just not himself. So we get to the clinic and I expressed my concerns about the behavior issues including the extreme hyperactivity and speech regression. The Dr says, "Lamictal is not known to cause those types of issues, but let's take him down by 1 pill, although I really don't feel comfortable doing so b/c he will likely start to seize again." First of all, Lamictal DOES cause behavior issues and hyperactivity is listed as a side effect. Shouldn't a neurologist know about the drugs she prescribes?? But I regress. I went on to say 'I am also still concerned about the rash on his face." To that she replied, "I don't think that's from the Lamictal and I don't handle skin issues so you need to take him to a 'skin' Dr." Yes. She said it just like that. She definietly showed just how invested she is in her patients. You start a very young child on a medication that you KNOW can cause a serious rash, yet you ignore the rash when it appears, simply b/c it is not a typical SJS rash, and push your patient on to a dermatologist to let them figure out how to treat a rash that started after the patient began a drug that SHE prescribed?! She's nuts. She went on to try and intimidate me by basically letting me know that she knows I took Jayden to see his old neurologist at Tulane (I actually went so I could get the referral to a new neurologist and get the hell away from her!) and that I need to decide who I want to take Jayden to b/c Tricare won't pay for both. I quickly told her that Tricare never paid for Dr. Nelson, but we paid to follow up with him b/c we had some questions. I'm sure she took offense but I didn't care at that point b/c I need to know how to take care of my child.

So, back to the point. Yesterday morning, Jayden woke up and the bumps on his face were turning red. There was a line of bumps on his forehead that was actually starting to swell. I kept feeling like I was over reacting b/c of what I read about online with the risk of SJS. I kept asking myself if I truly had a reason to not trust Jayden's Dr and her decision to keep him on the meds and continue to increase his dose. The answer kept coming back as YES! I decided to stop by the pharmacy and let a pharmacist take a look at his face. The pharmacist took one look and said "That's a drug reaction. You can tell b/c it's red and inflamed." He said we should contact the neurologist. I put Jayden down for a nap and waited to see what his face looked like after. When he woke up, his forehead and the bridge of his nose was red and swollen and he kept saying it hurt. I called the after hours clinic and had the Dr paged. She called back and I said the rash was now red and swollen and she simply said, with the nastiest attitude, "Well, just stop the lamictal." I waited for a second for her to give me more instructions like "And take him to the ER so they can look at the rash." or "And bring him to me first thing monday morning so I can look at the rash." or "And try rubbing some hydrocortisone on his face to reduce the pain and swelling." I was also expecting some sort of concern for my son. Perhaps "Does he have a fever?" or "Is he complaining of pain?" or "Is it spreading quickly and is it hot?" Just anything to make it seem as if she gave a shit. Instead, I got silence. So I said "Ok, so just stop it. That's all?" She said, again with her nasty and uncaring attitude, "Yeah, if it's red and swollen." So I said "Ok, so what do we do in the meantime if he starts seizing." She said, and I quote, "I will figure that out on Monday." I am not kidding you!! So the rash that's spreading across my child's body is not important enough for you to use your brain and figure out some relief for him at least until Monday? He basically has to wait until you are back in your office? Just let him suffer. And suppose something was to happen to Jayden (God forbid) and he is not here on Monday for you to figure it out then?! This is your fucking patient and he is having an allergic reaction to a medication you put him on and you simply say 'I'll figure it out on Monday."??? Don't get me wrong, I know the proper thing to do when the rash appears is to immediately stop the Lamictal. I'm going to brush aside (for now) the fact that the Lamictal should have been stopped 2 weeks ago when I first reported this rash, but when you tell a parent to just stop a seizure medication on a child who has uncontrolled epilepsy, it's only right to have some sort of plan of action for him in case of an emergency before you can figure out what to do on Monday. I think that her actions are completely unacceptable and NEGLIGENT! Today Jayden's face is bright red and very swollen. The areas of swelling are isolated to his forehead, around both eyes and on both cheeks. He has the beginning of a rash on both arms and one on his belly that is spreading fast and is very itchy. He says it hurts and it burns. It has a sandpaper texture to it. We stopped the medicine, so hopefully within a few days it will go away, but as far as what we have to do next...well we have to wait until tomorrow (if she even calls us) to find out. My child is suffering and I have no idea what the next step is. This is not a good place to be.

We do have a referral to a new neurologist. Unfortunately they are booked for the remainder of the year but Jayden's previous neurologist is going to pull some strings to get him in sooner. Soon can't come soon enough b/c I have a feeling that things are about to get very ugly between me and this heartless Dr who should really lose her license.

Finally, some answers...

in the form of an EEG report. Medical terminology translated by myself (with a little help from google, lol).

So, we had Jayden's followup appointment this morning at 9. I didn't expect much to come of the appt at all. At this point, I'm so overwhelmed with everything. He's weaning off of one medication and weaning onto another, so trying to keep up with what he gets and how much is definitely a headache. Him constantly missing school b/c of seizures is just not okay with me. His ups and downs...every time I even dare to whisper that he's having a good day, it ends badly. We can't even enjoy our son the way we want to b/c we are constantly on edge, not knowing when the next seizure will be. Saturday night, after a WONDERFUL day, he had a seizure on the couch. Things can change in a matter of seconds for him. So add to all of that, me trying to figure out, pretty much on my own, what I can do to help save my child from this constant pain. What questions do I need to ask that have yet to be answered? Then what do I do with the answers? My brain is just clouded with it all, so I have been praying for some help or at least a small patch of sunshine so I can take a breath and regroup. Rebuild my strength that I need to continue fighting for my son.

God listens :) The Dr came in to the room (ironically, she seemed to have a new nurse) and observed Jayden for about 5 minutes. He was playing with a pop up book and used some words to communicate with the Dr and to put certain pieces of the book back together...

"Sit down" "I read book" "There it is!"

She was impressed and so were we. What I do understand is that epilepsy causes severe neurological damage so we have to constantly watch his speech to be sure that it continues to get better and not worse. He may forget certain things (like ABCs) but as long as he is still adding new skills (like the use of pronouns recently) then he is still doing well. After she observed him doing his thing, she asked about the seizures. We reported the seizure from Saturday night and she explained that we will not notice much difference in the frequency of the seizures until he gets up to the correct dosage of the medication he's slowly being started on. He starts with 10mg per day for 2 weeks (one week is already complete) and then we add an additional 5mg per week until he is up to 50mg per day. He won't get to 50mg until November, so we have to hang in there. Thankfully, the weather seems to be getting cooler so hopefully the seizures at school will decrease. The Dr wrote out the weaning schedule for us (he's weaning off of another med as well, so it's a bit detailed) and then asked if we had any questions, so I asked her to explain to me the results of the EEG b/c I wasn't exactly clear. She said something along the lines of "It tells whether he's having abnormalities in the frontal lobe or generalized and then I can know which medication to put him on. This particular EEG showed that it was time for him to get off of Topomax and try a new drug." She also said that unfortunately, growth and epilepsy do not go well together. As he grows, his seizures can get worse, which is why his meds have to constantly be adjusted. I totally understand the growth/seizure issue, but I still didn't understand the EEG, other than the fact that it was abnormal and told her to change the medications. Hmmm. But my brain is foggy so I just left it alone. She came back in the room with a copy of the EEG report and said "You can keep this for your records. It's probably hard to understand but some parents like to have it for their records." I folded it up and stuck it in my folder to read it later. I actually read it on the ride home and couldn't believe all of the information I was able to decipher without the help of google.

First of all, it read "during drowsiness and sleep, very frequent spikes were seen..." So we now know for certain that most of his activity is happening in his sleep and it's happening often (probably every night b/c he was still on all of his meds during the EEG). What I do know, from my own research, is that sleep induced seizures are harder to treat. We've been asking how we could be sure if he was having seizures in his sleep or not. Here was our answer. That also explains the prescription that the Dr wrote today for a night time seizure medication. So she is treating the issue, but not explaining it at all :/ The EEG report also reads that his abnormal results and location of the spikes suggests a "benign occipital epilepsy of childhood". You can google it (or use swagbucks and earn FREE stuff!!), like I did, and get a better understanding of it. Over two thirds of the seizures occur in sleep. It's difficult to treat, however many children who have an early onset (like Jayden has) generally go into remission within 2-3 yrs of the onset and completely out grow the condition after reaching puberty. SUNSHINE!! I am aware that there is still that chance that Jayden can fall into the small percentage of kids that do not outgrow it (he's fallen into that small percentage quite often) but just knowing that there is a chance that he CAN beat this is enough to make me stronger. Strong enough to keep fighting to increase his odds of beating it.

The Dr told us that there were no changes to the EEG, however, the EEG report (read by the Dr at the hospital) said that there was a difference. In April, he had focal slowing in the left occipital region. This EEG didn't show any slowing so there is question of a structural lesion in his brain. The Dr mentioned that she is contacting the hospital for the results from his MRI in January (why she doesn't have it already, I'm not sure), but it looks like there will be another MRI in his future. We meet with Dr. N (Jayden's 1st neurologist whom we love!) on the 11th and will get his opinion on the results and also a referral to the epilepsy center at Children's Hospital for their opinion. Just knowing that he can overcome this lit a fire under my butt and I'm knocking down every door possible until we get a clear understanding and a solution/plan to helping my little boy. Today, we are one step closer than we were yesterday and I am holding on to that hope, in the form of a piece of paper. Thank you Lord!

Another update

Well. Not too long after I blogged this morning, Jayden's condition got worse. I mentioned that my husband had to pick Jayden up from school early b/c he had a seizure. He got home and was on the couch when he had another one. Then, 10 minutes later, another one. I figured, what's the use in calling the Dr b/c she shows no sense of urgency anyway but once my baby started screaming "Mommy help me!" I was going to force some urgency on them. I called and I told the receptionist, " I need Dr. A or her nurse to call me back asap b/c Jayden is having multiple seizures RIGHT NOW and is not recovering." Jayden was SCREAMING in pain as I left the message. I hung up, not expecting a call back anytime soon and went and got a cool wash cloth to place on Jayden as my husband held on to him. 5 minutes after I left the message, the nurse called me back {gasp}. She immediately said, "Dr. A is not in the office today but her partner, Dr. W, said that you need to bring Jayden in to the ER right away." Then she says, "Please keep us posted on his condition, I'm in the office today until 5 pm." Seriously thinking that I talked to a different nurse who just happened to have the same name and voice as the other nurse. Weird.

Well we hopped in the truck and drove to the ER (45 minute drive!). He had another seizure in his car seat on the way there. We didn't wait long at all in the waiting room and didn't wait long to be seen by the ER Dr either. Jayden's eyes were open somewhat and he was barely alert. He responded to pain and followed the Dr with his eyes when she moved around the room. However, he could not lift his head, his reactions were delayed, and we could not lie him flat or even on his sides without him going into hysterics. They drew blood and inserted an IV and then called the neurologist. The neurologist considered him as status epilepticus, which is pretty much intermittent seizure activity for 15-20 minutes or longer without regaining consciousness. So he was given a dose of Ativan through his IV. In less than 2 minutes, Jayden went from being listless, nonverbal, super drowsy, eyes rolling, to being able to hold up his head, smiling, TALKING, and even squealing. I could not believe my eyes. It was seriously the most amazing thing I've witnessed in a long time. That medication brought my baby back in the blink of an eye. When the Dr came back, even she was amazed! She said that based on his reaction, he was more than likely still seizing the entire time (even though we hadn't seen any tensing of his body in the ER at all)and the Ativan stopped it almost immediately. The entire mood in that room was changed. So Jayden was discharged with a Rx for the tablet form of Ativan to take in case of another situation like this one. The Dr also told us that his Diastat (the rectal rescue med that we carry with us) works just like the Ativan and will probably work just as fast since it's rectal, so I won't have to be afraid to use that if needed. Also, I was under the assumption that it should only be used for seizures lasting 5 minutes or longer. The ER doc told me that intermittent seizures (like the ones Jayden was having) lasting more than 5 minutes are just as dangerous if the person isn't regaining consciousness, so they should be treated as if it was an ongoing seizure. Patient education is very important! So now I know that we are prepared no matter the situation although I would LOVE for the seizures to just go away and leave my poor baby alone. Also, we left the ER with a Rx for the medication that his neurologist wanted to add (Lamictal) to his combination on the 27th. I guess God agreed with me, in that there's no reason to make my baby suffer until the 27th. He started it tonight and will begin weaning off of the Topomax on the 27th. I left the emergency room with more hope than I've had since the last time we were able to see Dr. N, Jayden's previous neurologist. I'm praying that this new combination of meds does the trick for him.

There was something really strange that my husband and I noticed at home today, during the fiasco. We have two mini schnauzers, a male (Kodi) and a female (Kaci). Kaci is 6 yrs old, and very calm around Jayden. She lets him pull at her ears (we stop him whenever we catch him, but once he dragged her across the floor by her ears!). She lets him ride Spiderman on her back. She lets him put sunglasses on her face and then she wears them until he takes them off :) Kodi, on the other hand, is 9 yrs old and not as patient. When he sees Jayden coming, he walks away. He either goes under the dining table and lies there or he goes to the laundry room. In fact, usually Kodi stays in the laundry room until Jayden is either taking a nap, upstairs playing,at schoo, or gone to bed for the night. LOL! He just doesn't have the patience. Well, when Mike got home with Jayden, Kodi came barging out of the laundry room and met them at the door, sniffing Mike's leg. They greet us at the door often, so we paid no attention to this. I hugged Jayden and asked if he was okay and then he put him on the couch and Kodi laid down in front of the couch. Everytime Jayden moaned or whined, Kodi sat straight up. When Jayden started to get really upset and Mike went to pick him up, Kodi got defensive and seemed to be guarding Jayden. He stayed at Mike's foot as if he was watching his every move and his eyes stayed fixed on Jayden. After I spoke with the nurse and we were packing up to go to the ER, Kodi started whining and pacing the floors. Mike turned the truck on and I took Jayden out to put him in his car seat and Kodi was at the door barking. Mike said he went to put Kodi in the laundry room (they go in there when we leave the house) and Kodi would not stay in there. He was scratching at the wall and whining. While Mike was inside, Jayden had another seizure in the truck. I think Kodi can sense the seizures! Crazy. We are thinking of switching up sleeping arrangements and letting Kodi sleep in the room with Jayden each night. We know he has seizures in his sleep, but we are never able to know when. My worse fear is that he would have one in the middle of the night and can't call out to us for help if he needs us. We've considered getting a seizure monitoring system, but as with any electronic device, we would have to expect false alarms and that makes me too nervous. The fact that Kodi is sensing the seizures is like a hidden blessing in the midst of all this sadness. I thank God for every rainbow he is sending our way and I look forward to many more.

EEG results

Jayden's EEG results are still abnormal. The Dr reported that "nothing has changed", meaning that the abnormal brain waves are coming from all areas of his brain and not just one localized region. Unfortunately, this does make it hard to find the correct medication for him. Certain anti-convulsants work best for certain regions of the brain, but in Jayden's case, it's his entire brain so it's going to take time to find the right combination for him. That part, I understand. What I don't understand is why we have to wait until his follow up appointment, scheduled on the 27th, to change his medication. Our first appt with this Dr was on Aug 26th. At that appt, we told her that Jayden was having AT LEAST one seizure a week and that this had been going on since June. I've read (and the Dr actually told me this!!) that the longer seizures are left untreated, the harder it is to control them. So if she knows his seizures are not controlled at this point, and she knows that his EEG is still unchanged, and she knows which medication she wants to wean him off of and what she wants to replace it with, then WHY is she making him (and us!!) wait another week and a half to make the changes? Why not give us the instructions on how to wean him and how to start the new meds and then followup with us on the 27th to see how he's doing? Honestly, I feel AWFUL, as if I'm dictating how this DR should be treating my child and she's been at this for over 20 yrs. I am not even close to being as experienced as she is, and I am SURE that she knows what she's doing and why she's doing it. However, as a mother, I think an explanation of WHY would help me at this point. To them 12 days is just another week or so. To me and my husband, 12 days is another 2 or more seizures that we know we will have to witness and be strong for.

Jayden hasn't been a patient of this new Dr for a month yet, but I know that I am already the mom that they roll their eyes about when they get a message from me. I'm the mom that they gossip about and despise. I know this b/c I have had to call to leave messages at least twice a week for them ever since Jayden 1st saw the Dr and had the 6 minute long seizure that same night. Now when I call, the lady at the call center knows me by name and says "Do you need to leave another message for Dr. A?" Yesterday, I said "Yes, and I promise you I wouldn't be calling this often if they would just return my calls!" It's true, I have to leave at least 2 messages before they return my call and God forbid I miss the call when they finally return it. It's freaking ridiculous! I don't want to be that mom. I have stopped and ask myself, am I calling too much? Since his 1st appt on Aug 26, I called 3 times about his 6 minute long seizure before they finally returned my called. I called twice about getting his prescription renewed before the nurse finally returned my call. Then I called twice about his EEG results and to find out if we needed a followup appt before my call was finally returned. Then, I missed the call from the Dr about the results and I had to call twice before I actually got a call back. One message never does the trick for them, so it's not me, it's them and THEY are annoying me! I mean, what mom is not going to call to answers for WHY her child is having seizures so often. What mom doesn't want reassurance that it will be okay? What mom is going to just wait around, for a month, on a Dr to finally decide what needs to be done with her baby who is having seizures so frequently that he's missing at least one day of school a week?!?! I don't know of any. It makes me wonder if the Dr and her nurse even have kids...

It's frustrating, to say the least. But now I will count the days until the 27th and pray for a decrease in the seizures soon. Until then, I need to go and take care of my little guy who was just checked out of school early b/c he had a seizure during breakfast.

PROGRESS!!

Finally, a post with great news :)

Jayden has been regressing a lot lately due to the increase in his seizure activity. One of the main things we noticed the he lost was his ability to identify the alphabet. It may sound very trivial, but it is very disturbing to see your child go from spelling out words to not being able to identify a single letter. It's extremely hard for me b/c Jayden expressed a love for alphabets very early on. I have a vivid memory of carrying him out of Kohl's one evening, when he was just 2 yrs old when all of a sudden I hear him say "K...O...H...L!" Of course, I know he had no idea what he was spelling, but he saw letters and identified them! And this happened all.the.time. He would pick up the newspaper and start calling out the letters in bold print. Also, I have an Aeropostle shirt that Jayden loves. It has "AERO" on the front and he loved to spell it out. I also have an Air Force shirt with big "AIR FORCE" on it and Jayden would spell that out and then say "Daddy" :)So letters were a big deal to him and it was very painful to watch him lose that. Every letter became B. Even the ABC song was now "B B B B B...." :( We would show him flash cards and every letter to him was B. We tried two letters at a time...A and B, and we would tell him to say A when he sees the A card. He'd repeat after us, but when asked what the A was, he would say B. My Aero shirt meant nothing to him anymore. Letters meant nothing to him anymore. I was very discouraged and worried about him. His teacher told me it wasn't yet an age appropriate skill, but his neurologist did agree with me that the lose of that ability becomes a concern when neurological issues come in to play b/c the brain is being affected.

So in true fashion, I took it upon myself to help my baby :) I ordered him the Leapfrog Learning DVD set. It comes with 3 DVDs (Let's Go To School, Letter Factory, and Talking Words Factory) and alphabet flashcards. It took a while for the set to come in, but it actually came in on the day we left for Panama City, just last Thursday. Jayden instantly loved them. The entire 4 days we spent in the hotel, he requested the DVDs. Whenever he asked to watch a movie in the truck, we turned on the Letter Factory. Before we left Panama City, on Labor Day (only 4 days after watching the videos), Jayden pulled the flashcards out of the box. They were still packaged so of course the only card he could see was the letter A. Remember, before these videos, all letters were B to him. He walked up to me and handed me the cards and said "Mommy, A!!" SO PROUD!! And as if that wasn't enough, last night we were chatting with my mom while she was proofreading nursing notes for her job. Jayden picked one up and grabbed my mom's face and said "You hear me?" (we ask him "Can you hear me?" very often b/c of his staring spells! lol) and then started "reading" the notes to her. On the bottom there are a few sentences in bold, black ink and Jayden pointed to the letters and identified just about all of them!! And this was only 7 days after being introduced to these DVDs!!

I am NOT expecting or even hoping that these DVDs teach Jayden how to read (although these DVDs are highly recommended for teaching early reading skills and is MUCH cheaper than Your baby can Read!). I am simply trying to help him to regain his love for letters. It was something he enjoyed prior to the seizures stealing that from him. His little brain is still so vulnerable, still growing, so there is still hope that he can regain skills that he has lost (or will lose). This is one step in the right direction for him and it certainly puts a smile on my face!

EEG scheduled

I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.

My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.

On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)

I'm Done.

First of all, let me apologize for what is about to follow. I need to vent. I just need to get this out, so I have to come to my blog...

Yesterday morning, before I even typed out that blog, I called and left a message for the nurse. The way this clinic works is that there is one front desk for every specialty clinic in the building. They take the message and email it to the correct nurse. Even if you miss a call (like I did today) you call back to the front desk and they send another email simply stating that you returned their call. Totally frustrating. Well anyway, my message yesterday was that Jayden was almost out of Topamax refills so we needed a new prescription called in. I left the name of the pharmacy and the number. I also asked for an update on the EEG that the Dr was supposed to be calling to have done sooner than the 16th. Of course, no one ever called me back. I wasn't surprised, but I was hoping that the nurse was smart enough to call in my child's seizure medications before he ran out with a 3 day weekend ahead. I called CVS and they checked the system and said that he had a prescription for Topamax on hold that they could fill. Since it was on hold, I knew it wasn't called in by the new Dr. It was on hold from Jayden's previous Dr from a mistake that was made by the pharmacy a few months ago. However, I waited until I got to the pharmacy to be sure. I was right. The prescribing physician was his previous neurologist. So I had the medication, which is great, but I was (and still am) angry at the fact that they didn't even bother filling his medication. Thank God I was silly enough to wait until he was completely out, but we leave for Florida tonight and he did not have enough to last the weekend. So I called again this morning. Oh yeah, I know I am the aggravating parent of the clinic now. I don't give a shit at this point. The nurse called me a few hours later but I missed her call. I called back and had to do the message circle again. She called back an hour later with a huge attitude. She immediately started to defend herself for not calling me back.

She said "We cannot call in that prescription for Jayden b/c we didn't prescribe it."

Wait, what?!?!

I said, "I know, his previous neurologist prescribed it and we just happened to run out of refills and need a new prescription called in since he is about to run out and I know that we cannot wait until the EEG b/c he will be out of medication by then and his seizures are already out of control." She then says, "Well when you came in on the 27th YOU told us that he was taking 15mg of Topamax, but you are asking us to fill a prescription for 25mg." I told her, "No ma'am. What I told you was that I was not sure of the mg but I could call you when I got home to check the bottle." I didn't want to turn around and point the finger at her, when in actuality, she went into the computer and it was listed there as 15mg so she went with that. But here is my problem with this...When I left the message I was reading off of his prescription bottle. 25mg. That's what he's been taking. That's what I read off the bottle. So you mean to tell me that b/c what I am telling you is on his bottle of meds does not match what's in your computer, you will NOT call in his medication? Does she know what will happen to my child if we just all of a sudden stop giving him his medication? She the nurse of a neurologist, so you would think that she'd know how serious that would be. But judging from her attitude, I don't think she knew, or she just doesn't give a shit. I told her, "Ma'am, he takes 25mg capsules. I read it from the bottle. He needs more medication." She said okay it will be called in. Thanks! So then I ask if the Dr spoke to her about moving the EEG up. Here goes...more finger pointing and defensiveness.

"No. {insert patronizing laugh}The Dr told YOU to call Tulane and schedule the EEG."

SERIOUSLY?! What is my insurance company paying her for???

I said, "So I just call neurology and tell them that I need my son to have an EEG done?" Nurse, "Yes." I said "Okay, thanks!" and hung up the phone. She is full of it. I cannot call a hospital and request an EEG for my own child without orders from a Dr. Besides that, it's NOT my job!!! That's ok. I'm going to ATTEMPT to call Tulane tomorrow. I imagine I will get several confused receptionists and schedulers (if I even get that far) who will be wondering why I am calling to schedule my child's EEG. Then I will have to call the neuro's office back, leave a message, wait for them not to call back. Then we will go on through a 3 day weekend. Who knows how many seizures Jayden will have had by the time the nurse calls me back. And by then, what's the use of having the EEG moved up sooner. This is unacceptable.

What's crazy is that this Dr is highly recommended and supposedly the best in New Orleans. I truly expected much better care than this for my son. The communication there is awful, and honestly, the Dr needs to find herself a new nurse b/c this nurse is giving her a bad rep. My son has had 4 freaking seizures since he saw her on Thursday, 7 days ago. I have had ZERO support from them and then today the nurse tries to REFUSE to fill his medication. The Dr may very well be the best in New Orleans, but unfortunately I don't think she is good enough for him.

Not Happy

I hate that I am even in a position to have to type this out....

I am not happy with Jayden's new neurologist!

We waited for months and I was SO HOPEFUL! So far, she was not worth the wait. If you read my last post, you know I'm not saying this b/c of her inability to "magically" heal my son and give us answers. I completely understand that she is human and I trust that she has some sort of plan to figure out what's going on with him and how to help him. HOWEVER...

Jayden was off Thursday morning. We actually left out of the house late b/c he was just not himself. He dazed almost the entire 45 minute ride to the clinic. Then when we got there he was very sleepy and lying in my husband's lap (pretty sure he'd had an absence seizure in the car). Well he was fine after a nap and we went over to my parents' house for dinner. Jayden played with his cousin and they even went to sell some of his cookie dough for school to the neighbors. He was just fine. But then he sat on the couch and we were at the dining table and could see him clearly. All of a sudden I heard him whine and I looked over at him. He tried to get off the couch but ended up doing a faceplant into the couch cushions. He cried and reached and the first person to get him was my niece. She sat him up but told me that he didn't want to get off the couch. Thinking back, when he starts having a seizure, he is impossible to easily pick up. It's like his entire body fights you. So she probably thought he was pulling away from her. He cried more and reached for me and I knew he was about to have a seizure (or having it already) so I picked him up and brought him to the table with us. It only got worse from there. He moaned, pounded on his head with his fist, pounded on my shoulder. He was hot and clammy and drooling. And this went on for 6 minutes. 6 long ass minutes. Can you imagine watching your child OBVIOUSLY in pain and you cannot do a thing FOR 6 MINUTES!?! My mom was ready to give him his rescue meds, but honestly, I wasn't prepared. I was worried about how he would react. The Diastat is rectal valium. The nearest hospital is over 20 minutes away. His seizures never lasted this long. I just kept saying, "It's gonna stop. It's gonna stop. It HAS to stop!!" It did stop eventually. But it left us with a baby that was out cold and family full of worry. He was absolutely fine the next morning albeit pretty hyper and uncoordinated.

So, of course, as would any concerned mother would do after an event like this, I called the Dr to leave a message on the next morning (Friday). My message was that my little boy had a 6 minute long seizure and his coordination is still off and I'm concerned. No one bothered returning my call. Bad taste. We stayed home (or close to home) all weekend b/c I couldn't bare him having a long seizure like that out in public. My strength is breaking. Sunday he had another one. It was VERY short, but strong enough to make him scream out in pain and then pass out. I called again on Monday and this time I said that I left a message on Friday and I didn't get a call back but really need to speak with someone b/c I'm concerned about my son. 2 hours later, the nurse called back. I told her about the seizure and she asked me if he was breathing the entire time. He moaned alot and every now and then he did take a deep breath before he seized again. That's all I could tell her. His face was losing color but it had been that way all day (the color of his face is the first thing I notice on a bad day). So then she says she will tell the Dr and the Dr will give me a call back. Well that was at 10am. 4:30 came and I never heard from the Dr. I called back and left a message asking if the nurse spoke to the Dr about my son. Yeah, I annoyed the shit out of them, but I cannot be timid about this when my child is suffering and possibly having some brain damage done during all of these seizures! If anything, give me a call back for reassurance. Well at 4:55 my phone rang and it was the Dr. I gave her a run down of what was going on and she said that she will call another hospital to see if they can do his EEG sooner than the 16th (the 4th EEG when the first 3 were all abnormal anyway...)but that she couldn't do that until the next day b/c scheduling was closed. Scheduling would not have been closed had she called me back sooner. But I give her the benefit of doubt and say that she was more than likely very busy with patients. HOWEVER, what if my son was an emergency situation?! I'm just not comfortable with that. This conversation with her was on Monday. She did not call me yesterday with any info on his EEG. I called this morning to find out about it. I left a message and I don't expect a call back today. I don't like chasing behind her. It's one thing if Jayden was a 100% healthy child with no serious issues, but frequent seizures is very serious. She should be making a bigger effort to not only get him help but to reassure us that she is working on a plan. To reassure me that the seizures he's having is not hurting him even though they are NOT controlled. To reassure me that the medication I'm dumping into his system twice a day (that is NOT working) is not poisoning his little body. Instead, all I get from her after I track her down is "Let me see if I can move his EEG up sooner, but the main thing we need is the genetics appt b/c I have to know if this is even something worth treating." Um, gee thanks for that reassurance!

I am so sick over this. I feel like I am failing him. His last neurologist was wonderful, despite the fact that he did not specialize in epilepsy. When Jayden was referred to him, he only had the abnormal EEG. We hadn't witnessed multiple seizures until the first (that we saw) grand mal seizure on Thanksgiving Day. After that, the seizures kept coming and he got the diagnosis and Dr. N was honest with us and told us that he needed to refer us to a neuro who specializing in E. But one thing about Dr. N...he returned calls. He reassured us. When Jayden's seizure activity increased, he did something about it. And when Jayden was very sick in April with breakthrough seizures (40-50 seizures a day!!) Dr. N returned calls immediately telling us what to do. He even called down to the ER to let them know that Jayden needed to be admitted when he arrived there. I am so afraid of that happening again while he is under the care of this Dr. She is not easily reached and does not seem to think that we are even deserving of a returned phone call concerning our son's health. I'm not happy with her. Sometime I wonder if I'm expecting too much b/c this is my son. But NO!! What is a phone call? What is a few minutes out of your busy day to let a very concerned parent know that you are actually working on a plan for her sick child? I don't even need the Dr to call me. Pass the message to your nurse for crying out loud. Here we are, going into a 3 day weekend. We have had a trip planned to visit my inlaws in Fl for some time now. We will have to go prepared for Jayden to have a seizure. I can handle the seizures. It's tough (especially the long ones!) but he's so scared when he's having one so I have to reassure him that it's gonna be alright. I only ask the same of his Dr. It's time for me to start the search for a new one...

Broken

Well, today was the day that we've patiently waited on for nearly 2 months now..To meet with the pediatric neurologist who specializes in childhood epilepsy. I prayed that we'd walk in there with our list of questions and leave there with all of them answered. I believe that we often expect way too much out of Drs. Almost as if they have an answer for everything when they simply do not (b/c they are HUMAN!) and we expect them to have a magic wand that they can wave and say some magic words..."Seizures be gone!!" and voila, he's healed. It's not like that at all :(

I can't say that the appointment started off in a positive fashion. We live 45 minutes away from the clinic and we tried really hard to get out of the door on time. That's pretty hard to do when you have a little one who has to take 5 different medications each morning and that same little one is having a rough morning. So we left out of the door 10 minutes late. Our appointment was scheduled for 10:30 and we got there at 10:42(per my watch). We get checked in and they call Jayden back. The first thing the nurse says is "We won't be able to triage him as we usually do b/c you are running late." I ignored her b/c really, it takes all of 2 minutes to triage and I'm sure the Dr would have us waiting longer than that. So as she waled us to the room she asked something about our address and she noticed we live in Slidell so I said "That's why we are a bit late. We had a ways to travel to get here." Then she says, "Yeah well, you can't be more than 15 minutes late or we would have to reschedule the appt." So I smiled and said "Oh okay, we were just about 15 minutes late and I apologize for that." She said "16...you were 16 minutes lates." ARE YOU KIDDING ME? I simply said, "Wow." I wanted to slap her. I told my husband that if the Dr is as nasty as her nurse then we will have a problem. Thankfully, that wasn't the case. In fact, the Dr shooed her crazy nurse away when she questioned me about Jayden's med dosage when what I was telling her wasn't matching what was in the system. The Dr said, "Mom knows how much he's supposed to get and it probably just wasn't changed in the system. It happens." So anyway...about that appt.

The first thing the Dr says is "Ok, if it's not broken, I won't fix it, but if it is broken, I WILL fix it!" Big sigh of relief :) So the first thing we tell her is that he's been having seizures at least once a week. She says okay that's not good. That needs to be fixed. So she asked about the nature of his seizures and his postictal state. I also gave her a list of our concerns (I'm THAT mom) but she was very thankful for it and even asked if she could keep it for her records. She highlighted things that were red flags to her. She seemed mainly concerned with his lack of coordination and constant falling. She asked if we noticed any seizure activity when he would fall, but we didn't. We just thought he was clumsy or thrown off by his meds. She told us that since his seizures start and end so quickly, the falls may be seizures. She was also VERY concerned about the regression. Jayden's pre K teacher told us that it really wasn't a concern b/c the skills that he was losing (ABCs, counting, colors, etc) are not necessarily age appropriate skills. The Dr agreed with that, but she said it becomes a concern when there is a know neurological issue. This means that his brain is being directly affected. We were very surprised that she wasn't as concerned about the heat sensitivity. She told us that heat makes epilepsy worse. So he's avoiding the heat b/c the heat makes him "feel funny", which is the aura he gets prior to seizing. Makes good enough sense. So the seizures need to be better controlled and then the heat sensitivity should get better.

The Dr wants us to get him back in to see the genetics Dr so that he can dig further into the chromosome abnormality and find out how it's directly affecting (or causing) the epilepsy. She also scheduled another EEG. This will be his 4th (or 5th) I've lost count. He has to be sleep deprived which means I will be sleep deprived. And I have class on the day that it was scheduled. Oh joy!! She pretty sure that he will need his medications changed but she wants to find out exactly what part of his brain the seizures are coming from so that she can get him on the correct meds and dosage. She left us with a warning that since his seizures went untreated for so long (she said his initial regression at 18 months could have been due to seizures and we didn't catch them until over a year later), they will be harder to control, even with medication. So in a nutshell, it's broken and needs to be fixed. And fixing it is not going to be as easy as waving that magic wand and saying those magic words. If only we lived in a perfect world.

Back to School

Today was Jayden's 1st day back in preschool after his summer break. He was excited to go back. He has grown so much over summer break, physically and mentally. He's talking in complete sentences, making requests, and he's completely potty trained. When school let out in May, he had the pee pee part down but due to the damage in his intestines caused by the celiac disease, he was still working on gaining control of his bowel muscles. When I told his teacher that he was in underwear and 100% potty trained she said "He's WHAT?!?!" I said "He's potty trained!" and she gave me a hug! LOL! One less pullup/diaper she has to change, so I can understand the relief!

Here's a cute video of Jayden headed to his class on the first day :)

Annual Family Vacation 2010, RECAP

We've been going to Orlando each summer in August since 2004...Mom, Dad, my niece, and Mike and I. Once Jayden was born, he joined in on the fun. And this year was the best yet! But, of course, as with any vacation there is always The Good, The Bad, and The Ugly!

Let's start with the Good...

WE HAD FUN FUN FUN!! The drive to Orlando and back was AWESOME! Jayden was so well behaved that we hardly knew there was a 3 yr old in the truck. This was completely opposite of last year. Last year was AWFUL, but of course we had no idea what was truly going on with Jayden and were still fighting medical Drs to find out. This time around he watched his movies, got out at rest areas to use the restroom, and was just all around a great traveler. Once we got to the resort, Jayden had to have said "Wow" about 50 times. He was truly amazed and he showed that. We went to Universal Studios, Islands of Adventures, Magic Kingdom, Epcot, and Hollywood Studios. We also did a day at Blizzard Beach Water Park. Jayden met and took Pictures with Spiderman (and the other Marvel comics superheroes),Mickey and the Gang, and several other characters that he knows and loves. He is exactly 40 inches tall so he was able to ride on a few rides. His reactions were PRICELESS! On the Spiderman ride, I wish I could have had him on video. He was helping Spiderman to fight crime and had his jaw on the floor the entire time b/c he really thought he was in the scene. And we took him on a Jaws ride. We didn't think he knew anything about Jaws, but when we got to the attraction he pointed to the shark and said, "Jaws!!" Then we remembered that he watched Jaws at on of the gym's dive in movies. He has a superb memory. He was so into all of the action and he does this thing where when he gets shocked he shakes his head as if he's doing a double (or triple take) and holds his mouth open in shock. He had so many people laughing. The parks were very accommodating to Jayden's needs as well. We were given a red sticker to put on his stroller to allow us to use it as a wheelchair so we only took him out when we really needed to. For the most part, he was able to stay in the stroller and the park staff was very kind about it. This helped him alot b/c at one point (going to meet Mickey at Magic Kingdom) I didn't use the option b/c I thought he could handle the line since it was inside in the AC and within 10 minutes of waiting, he started hyperventilating. He still has the fear of large crowds and I'm sure the noise of all the people talking was overstimulating to him. After that, I decided to just use the pass to it's full advantage. Jayden was also accommodated at the food areas as well. One day he enjoyed a hot dog on a tapioca bun. Pure joy! This was truly his magical year!

Now how about the Bad...
Of course, the seizures :( We definitely didn't expect to get through this trip without a single seizure. We actually went prepared for them. We had BOTH of his Diastat meds in case of a seizure lasting 5 minutes or longer. We had an ice pad for his stroller, two fans, and a stroller parasol. So many people commented on his get up, lol! We had ice packs in case he overheated, his noise reduction headsets in case he got overstimulated by the noise, his blanket for security, and lots and lots of water. We were also prepared to leave the parks at anytime for him b/c we knew that he'd been having issues with the heat/sun lately. However, his seizures all happened outside of the parks, in air conditioned areas. The 1st one was bright an early Sunday morning, before we even left the resort. Mike and I were packing his bag, my mom and dad were in their room, and Jayden was on the couch with my 13 yr old niece. He went from being a speed demon to sitting on the couch whining just like that. I never seem to panic when he does this, I have no idea why. I went and held him for a while and he was just acting sleepy so I figured he was just tired from the long day we had Saturday. I sat him on the couch and went to finish packing his bag. They were watching the Disney channel and I heard Jayden say "I'm scared". He says this before a seizure, but it still didn't register to me b/c I wasn't looking at him. I heard my niece say "You're not scared, this is a cartoon!". He kept whining saying he was scared and then he got quiet (I thought my niece picked him up) and then all of a sudden was a full on cry, as if he'd fell and hurt something. I went to get him and immediately knew he had a seizure. I didn't want to scare my niece so I just picked him up and carried him to our room where he immediately passed out. My mom came out after a few minutes and when she saw him she asked what happened but she already knew. I told her he had a seizure and my niece came running in very concerned. She said "He just started screaming, I didn't know it was a seizure." It's so hard on younger kids to understand that seizures are not going to always be extreme like the ones they see on movies. I told her what to look for in case he was with her again and we were not in the room. A major sign would be him whining and saying he's scared. I assured her that it wasn't her fault and he would be okay. He woke up after a good 45 minute deep sleep and then we headed to the park to see Spiderman and the rest of his day went extremely well! Mike and I were sure that this would be the only seizure b/c he has been having one a week for some time now. So we were both glad to "get that out of the way", but we were wrong. Mon-Wed went GREAT and Jayden was having so much fun! Thursday was Mike's birthday and we had reservations at Chef Mickey's for breakfast. Jayden woke up feeling warm. I left his thermometer at home, but my mom and I both agreed that he felt warm enough to need some Motrin, so I gave him some before we left for breakfast. He was very quiet and drowsy on the ride to Chef Mickey's. My dad and I kept saying "I don't think today is gonna be a good one for him." We got to Chef Mickey's and he seemed to perk up a bit, but you could tell he still wasn't feeling well. He only wanted to sit on my lap. When his food came out, he did eat some, which I thought was a good sign. His eyes had a very far away look to them though and he kept staring off into space. When Mickey and Minnie came to the table he hopped out of his seat to give them hugs, but his coordination was WAY off. He still wanted to see them though. He'd give hugs, pose for a picture, and then walk back to his seat and finish eating. And can I just say that we found out that Jayden has a huge crush on Minnie?? He gives her the sweetest look and the smile that shows both of his dimples. That was no different on this morning and he even followed her to give her one last hug before he came back to the table. I went to get him some more sausage links and when I got back to the table my mom was holding him. He was moaning in her arms, just very uncomfortable. Then his moaning got loader and suddenly stopped. His eyes rolled back and he tensed his limbs. It was as quick as 3 seconds but it exhausted him :( He was in and out of it for the rest of breakfast. He was still whining and pointing at Goofy and Pluto b/c he wanted his picture with them. I held him in those pictures and then when I sat back down, he crashed. The chef (who fixed Jayden's GF meal) came out to check on him and asked if we needed someone from first aid, but we figured he'd be ok. We sat at the table a while longer so that he could rest in the AC before we went out in the heat to either go back to the resort or head to Hollywood Studios. It's hard to tell with Jayden b/c he can pass out after a seizure and wake up like nothing ever happened and trust me you'd hate to be the one trapped in a resort with him once he gets up b/c it's like his little body has completely recharged and he cannot stop! He slept for about an hour in the restaurant and in the hotel lobby. When he woke up he was talking and pointing, even responding to questions. This usually means he's okay, so we caught the transport bus to Hollywood Studios. When we got to the gates he said "YAY!! Disney!!" We got a map and we 1st went on the movie ride (it's like a moving theater that rides you through different movie scenes). Jayden LOVES the movies! He got in his seat, which was right behind the driver and he pointed to himself and said "Hi, I Jayden Johnson!". He was SO ALERT on this ride and his face of shock had returned. At one point our driver got off and played in a scene and another person hopped on and "stole" our moving theater. Jayden looked at her with his eyebrows down and said "HEY!!" He was completely there so we had no reason to think that he was not okay. When the ride was over he stood up and clapped :) After that, we headed to the Muppet 3D show. We were trying to take advantage of everything that was indoors in AC until later, just in case. Well, in the Muppet 3D show, just in case actually happened. We used the handicap entrance (and can I say how guilty I felt pushing my child in a stroller through the handicap line with kids who were in wheelchairs??) and sat in the accessible rows which were right near the exit. He sat on my lap and then once the show started he got clammy and started crying. He kept saing "Ouch". I asked what hurt and he was very uncomfortable. His whining turned into crying. Sometime he throws up after a seizure so I thought maybe he was about to through up after his seizure he had that morning. I kept saying where's your bobo and he pointed to his head :( Then he had another seizure. Mike picked him up and sat on a bench against the wall to calm him down. Then we put him in his stroller and went straight to first aid. They gave us more ice packs and let us sit in there with him for as long as we needed. We decided that going back to the resort at that point wouldn't be the best option b/c it would mean bringing him in the heat to wait for the Disney transport, taking him out of the stroller to get on the bus, walking in the heat to the truck, etc. It was just too much stimulation when what he really needed to do was rest. So we sat there with him. First me, then my dad, while we took turns taking my niece around the park. She wouldn't smile though. She didn't want to go around the park, she wanted to be with Jayden. In the 1st aid center, another mom commented on how he was living the good life. Little did she know that he was actually suffering. We weren't in there just so he could get a nap in. He slept in the first aid center for about 30 minutes then woke up and watched the cartoons. When we got there to check on him my dad said that he was up for a long time but wasn't talking. That concerned us b/c it had been nearly 2 hours since the seizure. So I started asking him questions. He never answered any. Then I asked him if he wanted ice cream and all of a sudden he says "Let's go!" LOL! We took him to get his picture taken with Buzz and Woody and by the time he was done with that, Jayden was back and ENERGIZED. He was not listening, he was touching everything, he was singing, and he was begging for everything he saw! we went inside to the playhouse disney show and he was dancing all over and screaming "OH TOODLES!!" Yep he was refreshed!

Oh and there was lots of Ugly on our trip as well...
First lets talk about the Harry Potter ride!! The ride that many people waited in line for nearly 8 hours at a time when it first opened. We had a fast pass so we didn't wait nearly as long (maybe 10 minutes tops) but little did we'd be on the actual ride for well over an hour. We were riding and all of a sudden the sound stops and the rides comes to a stop. An announcer comes over the loud speaker and says something about technical difficulties. I thought it was a part of the ride as we were hanging there leaning forward with all of our weight on the chest bars. Then about 3 minutes later we are still sitting there and the lady says something else about technical difficulties and that they will be turning on the lights for us and moving our seats to a more comfortable position. 10 more minutes pass and then she comes on and says "I apologize but we are not able to move your seats at this time. We will be sending an emergency crew to evacuate the cars one by one. This evacuation process could take close to an hour to complete. Thank you for your continued patience." WOOOOOOW!!! So we just hung there. At first we tried to make light of the situation and we told jokes and got really acquainted with the guy who was in the car with us. But after hanging like that for over 30 minutes and no rescue in sight, panic started to sink in. My mom was getting a headache and I was getting claustrophobic. I used my mind to ward off two panic attacks that almost set in. I actually had to close my eyes and think of my somewhere totally different. It was AWFUL! But to make matters worse, when we were finally rescued after hanging there for over an hour, the ride staff was VERY NASTY to us. One person yelled at a rider for taking pictures with his phone. Then a lady yelled at me when I stopped to wait for my mom who was looking very sick and could barely walk straight, "THE EXIT IS RIGHT THERE KEEP IT MOVING!" No apologies or anything. We went to guest services and complained and they issued us an extra day in the park. We couldn't use the extra day but at least they did something about the matter. When we got back to the resort we found out that the Harry Potter ride has these technical issues very often. Just go on youtube and search for "Stuck on Harry potter ride". You'll find several videos. I guess the person who yelled at the guy for taking pictures didn't have the opportunity to catch all of the videos being made, LOL! Surprisingly, we also ran into some ugliness at a Disney Park. We were at Epcot and all of a sudden there was a huge downpour of rain. A huge crowd of people were running to the building to get out of the rain. Of course you have to expect to get bumped into. I was running and pushing Jayden's stroller when I mistakenly ran up on a woman's leg. She stopped and turned around and looked at me with the death stare. I said "I'm so sorry I'm just trying to get my son out of this rain." She continued to stare and wouldn't let me move and then I ended up being pushed by the crowd behind me and the stroller hit a man. He proceeded to turn around and yell at me in Spanish. It was a huge, ridiculous mess. I simply said "What do you expect to happen when a large crowd of people are running to the same place at the same time??" Goodness!! And finally, on our last day at the parks, Jayden's stroller tire went flat. It would not hold air in it so we had to use one of the rental strollers from the park. Poor Jayden was SO uncomfortable. Who wouldn't be?! Those stroller are awful! I was so upset, but thankful that this happened on our last day.

Looking back, I've learned so much on this trip. First of all, I don't think I had fully accepted just how bad Jayden's epilepsy is. I thought I did, but truly I hadn't until I looked back at the pictures on my camera. On the days where he was not having seizures, he has so much life in his eyes. On that day at Chef Mickey's, even before the first seizure, there was nothing. He just had a blank expression in every picture. Even if he smiled there was nothing behind the smile. That broke my heart. The seizures truly affect him in ways I never seemed to notice. I don't know why I never noticed it. Maybe b/c I want to wish it all away. But it is there and I need to accept it. Sure, it could be worse. He could be wheelchair bound like so many of the kids I saw at the parks. But the truth is, I should not feel any guilt for pushing him through the handicap entrance b/c he truly needs the accommodation. I always tell people that the seizures don't scare me much, I just feel really sorry for him when it happens b/c he's scared. Perhaps I was in shock or denial about ti all, b/c after this week, I am nervous and scared about them. I don't want him to have them anymore b/c I don't want to see him with that blank expression ever again. I don't want to imagine just how scared he must be or how much it must hurt him. I want them to stop. I've also realized just how much he NEEDS a stroller. He's 3.5 and 40 inches tall. You'd think that by now we could just toss the stroller, but I saw how his coordination is thrown way off well before he even has a seizure. There are days when I'm dragging him out to a store with me and he falls in the parking lots, or cries and says his head is hurting, and then later he has a seizure. He knows when they are coming, I don't. I think keeping him in a stroller would help both of us b/c I know how hard it is for me to walk when I'm dizzy and I also know how hard it is for me to have to carry him after he has a seizure and I am miles away from the truck. The hard part about that will be finding a stroller that's big enough to accommodate him, yet small enough for me to keep in our car or truck whenever we go someplace. I have learned that I need to carry a thermometer and Motrin with me at all times. He doesn't normally have febrile seizures (actually Thursday was the first time he had a fever before having a seizure), but I definitely need to make sure his temps are not going over 99.5 since he does have the seizure disorder. I also realize just how much we need this new neurologist to find out why he is having so many seizures and how we can better control them. We need some answers b/c he is still suffering. Sure the seizures are only 3-5 seconds long, but we have no way of knowing how strong and painful those 3-5 seconds are to him. They are obviously very strong b/c he passes out after. And not to mention how horrible he feels well before the seizure even happens. We need answers and I pray that this Dr can help him. we meet with her on the 26th of this month. I've learned that it's time for me to accept that my child has a disability and I need to make changes in our life to make his life easier. I can and I will do it for him. He deserves it.

All in all, our family vacation was a huge success!!