Monday, December 27, 2010

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 :)

Saturday, December 25, 2010

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.

Thursday, December 23, 2010

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...

Wednesday, December 22, 2010

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.

Sunday, December 19, 2010

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.

Thursday, December 16, 2010

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 :(

Tuesday, December 14, 2010

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!

Monday, December 13, 2010

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.

Sunday, December 12, 2010

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.

Monday, December 6, 2010

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!

Sunday, December 5, 2010

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!