Seizures & Medications

I'm going to be lazy, because I'm over six months pregnant, I worked today, then came home and made dinner and put Simon to bed. In a little bit Malachi's going to go to bed and John and I are going to hang out. I'd rather hang out with John than write a long blog, so...you're going to get pieces of things I've already written.

Written to our D.C. Neurologist on 3/11

Dr. Lastname,

You saw Malachi (last name) (DOB) as a patient in '09 & '10. We've since moved to Costa Rica on orders with the State Department. Malachi was seizure free for almost 18 months. We have a relationship with a Neurologist here, Dr. Firstname Lastname at CIMA, and had been doing check ups with him. Recently Malachi has started seizing again. He had a grand mal on Friday 2/4 and again on Wed 2/9. He was also having partials. An MRI was done on 2/12 and an EEG was done on 2/14 and both came out normal. The Dr. increased his Keppra dosage to 300 mg 2x/day. He continued having partial seizures but the grand mals seemed to have stopped.Because the partials continued the Dr. here upped the dossage to 400 mg 2x/day. Yesterday 3/10 Malachi had another seizure. This time it wasn't a grand mal but one where he blacked out, had his typical postictal period, and then went to sleep. The Dr. told us to keep the Keppra at 400 mg 2x/day and also add Trileptal 250 mg 2x/day at first and then to 300 mg 2x/day until he sees Malachi on 3/22. 

I was able to buy the Trileptal in suspension form here, but there's no Keppra in suspension form in all of San Jose. They only have tablets and it's a different dosage. Here's where this email comes in...

I'll be in the D.C./NOVA area (insert dates) by myself for work and I was wondering if you'd be willing to write a Rx for Malachi for Keppra in suspension form at 400 mg 2x/day so I could buy it while I'm in the States. We have enough to cover ourselves until then. 

If you need any more information, I'll be happy to provide it. I can also provide you with the email address and phone number for Dr. Lastname. 

Thank you,

Sara Lastname

We had a lot of drama with the MED unit (our normal nurse was at a conference in Singapore, we had a substitute) trying to find the Keppra. When our normal nurse got back on Saturday she called and left a message saying that she was back and she wanted to hear about Malachi. We found out on Saturday night that we were much lower on medicine than we thought, and in fact only had 7 1/2 days worth. I called our nurse on Sunday morning and told her our dilemma. She said it would be her top priority on Monday morning. 

On Monday she put in an overnight mail order of three months worth of the Keppra we needed. That wasn't going to get here fast enough though (new Rx's in this system take five to eight days to process, expediting it would mean four to five days, and then it has to be sent from D.C. to Costa Rica). She finally called the Costa Rica Neurologist who said you can find liquid form at this pharmacy, and this other pharmacy. Our nurse called and arranged to have it delivered to the Embassy where I was working yesterday (the Trileptal was delivered to our house last Thursday, I LOVE pharmacy deliveries). We now have enough Keppra to get us to the mail delivery, and beyond I'm sure. 

Since we started the Trileptal on Thursday, we haven't had any full seizures but are still seeing partials (he had 8 on Sunday alone (and all but one was before 8:30 a.m.)), the Neurologist said we need to give the Trileptal 7-10 days to become fully effective. He seems completely unconcerned about the partials though. I'm not noticing any side effects from this new medicine. 

Oh - and btw. Dr. Lastname from D.C. still hasn't gotten back to me. That would never happen here. I don't know that I'm very excited about Medical care in the States anymore.

Vomiting and a Seizure

I'm tired, so I'm going to bed in about five minutes, but I wanted to put down in the blog a bit about today.

Malachi's teacher called at 2:30 and asked if I was the one picking Malachi up. I said yes and that I was getting ready to leave. She told me that since lunch he'd been complaining about an upset stomach, and had been crying for Mommy for a while. When I got there he wasn't playing with friends, he was sitting in a chair waiting for me. I talked a bit to his teacher and we went home. Right after I'd opened his door and grabbed his backpack he said "I don't feel good" and then proceeded to puke in the backseat of the car. Throughout the rest of the afternoon and evening he puked another five times. He can't hold down anything.

We put him to bed before 8:00 after about an hour of being puke free. We brought an extra crib mattress that we have in the house into our room and put it next to our bed so he wouldn't have to walk across the house to tell us that he got sick. I came downstairs to watch T.V. and John stayed upstairs to play a video game. I heard John call out Malachi's name and go into our room and then heard silence. I knew that since I didn't hear the door close, or crying and puking it meant seizure, but since I didn't hear anything I didn't want to jump to conclusions. John made his way downstairs and told me that in fact he did have a small seizure. Not a partial, just a short grand mal. No drool, and quite short. Neither of us is very surprised really since his little body and mind have been under a ton of stress since about 3:00 today. Not only has he puked six times, but he has no nourishment because he can't keep anything down. Poor guy. Luckily he did wait long enough to puke the last time that his medicine should have been digested.

John's going to email the Neurologist in the morning and give him the details. I had already emailed his teacher and told her that he wouldn't be in school. I have a work thing tomorrow, I guess I may not be able to make it to. Of course, after a night of rest, all may be better.

Breakdown

Today I had a breakdown. Not that I haven't had a few in the last eleven days,  but this was like a real breakdown. First came the stress cry that I got under control after only about five minutes (that's a really long time to cry), and then my body and especially my brain only did what was necessary. During the kids' naps I went to my "happy place." I was somewhat blissfully happy for a little bit because my brain wouldn't allow anything else. Then I returned to reality and fell into some crying, although this time instead of being in the "privacy" of the car with John and Malachi, I was at Malachi's school with all of his friends and their parents for the Valentine's Party/Presentation. It was very hard for me to control myself there. I almost wasn't able to do it a few times. My husband was gracious enough to make dinner (well he usually does, but I think he could sense my utter lack of willingness to do it) and after the kids went to bed I drew a bath, lit some candles, and read a book (my "happy place"). I've made it known that sometime soon I need dinner and a movie out with a girlfriend. I'm sure I'll get that with no contest.

Just for a quick update: Malachi's EEG went well. The Dr. will got the results to both tests tonight. We're apparently meeting with him on Thursday at 2:00 but were only informed of this through the Embassy nurse who was informed by our neurologist. I was supposed to bring him the previous test results (the ones done 19 months ago) but when I went to their office today it was closed...at 10:00 a.m. They don't hold normal office hours here...anyway, I digress. So he has nothing to compare them with because I have to work the next two days. Oh well. He'll tell us that there was nothing on the MRI and the EEG and we'll tell him that's what happened last time.

Simon's still teething the 8th tooth, which came in one day last week, but other than that, he's great. Thank God. #3 is moving a ton and I can even now feel him punch and kick at the same time. He's strong too, it's starting to get a bit...uncomfortable. Less than half way to go!

Sort of Seizure Free

Malachi had a few partial seizures this morning. We kept an extra close eye on him today since the last grand mal he had was precluded by a partial. Thankfully though, there was no grand mal.

We stayed at home all day until 7:00 p.m. when Malachi and I went to the store to get a few things. Then we had a good time staying up until 10. We watched Extreme Makeover Home Edition, talked to John's parents for a while, and then did dishes together. Those things with the grocery shopping and getting ready for bed equaled the three hours that we had to keep him up. He's been very excited about staying up late and getting up early, we'll see how excited he really is at 4:00 a.m. when John gets him.

Tomorrow's test will be very different. It's only going to be 30-40 minutes long and they want active and sentient brain activity so he will be falling asleep at some point. He also won't be so restricted. He won't be able to move around a lot, but he won't have to redo parts of his test because he moved. The Dr. should get the results from the MRI tomorrow, best case scenario is that there's no change. I don't know when he'll get results from the EEG. Last time we did a short EEG like this there was no seizure activity on the test. Even when we did the long test there was no seizure activity. So we'll see if they can find anything this time.

John missed work on Thursday and is going to miss part of the day tomorrow, but we'll bring him to work when we leave the hospital. Malachi's not going to be in school in the morning but we're going to the Valentine's Day Party at his school at 2:00. We still don't know if he'll be going to school on Tuesday. We have much to discuss.

We'll let you know how tomorrow goes.

Victory

I feel like today was a victory. As much as possible we treated Malachi like a normal five year old boy, and he was seizure free yet again. I wish I didn't react every time he trips, or makes a jerky movement but every move he makes that reminds me of a seizure makes my heart do two things, stop and then race.

John said that they decided to do the MRI with out contrast and would refund us $300 from the $800 that we paid. However, the Dr might decide we have to go back and do one with contrast anyway. I hope not because that would mean that he would need an IV and try putting a needle next to Malachi, it makes him freak out. Today during the preparation the MRI technician pulled out a syringe that had a needle to measure the sleeping medicine for Malachi. We all thought it was going to be a shot and he was crying so hard, he was so scared. He stopped as soon as he was told it was only for measurement.

My wonderful girlfriend did come sit with me, and I needed her at times. She gave me a big hug when she arrived and it was perfect, I needed it. Malachi walked out five minutes short of two hours after I left the imaging center. I was so happy to see him walking out of there, and he had his mind on one thing...food. He'd been fasting so he was so hungry. He had a snickers bar and a box of orange juice for breakfast.

Today was a pretty normal Saturday after that. We napped, hung out, went out for dinner, did a bit of shopping, ate cupcakes (the last three items will be discussed more in the next blog post which will be dedicated solely to my amazing 1 year old), Skyped with Grandma and went to bed a little late.

Tomorrow we're hoping for a chill day, and then we have more testing again on Monday.

The Waiting...

Malachi's MRI is going to take two hours. John's in the room with him holding his hand. I can't be there because of the pregnancy, but I don't know that I'd want to be there right now. I started crying when his head was being strapped in, the technician asked if I was ok. I had my back to him and nodded, I'm not going to cry on his shoulder. I might not have been the best patient's mom, but I wasn't all that impressed with him. In his defense he did try to calm Malachi down when he thought there was going to be a shot. Malachi just wasn't accepting it.

I'm so thankful for a good friend who is willing to come sit with me. Yesterday when talking to a (different) friend I told her that I felt like there was a lot of pressure (metaphoric) building up in me and that I felt like I could blow at any minute.It would be really bad if that happened while I was in the cafe at the hospital.

I'll let everyone know how our day goes tonight. Have a good Saturday all.

Keeping a 5 year old awake...

...is easy until about three hours after their bedtime. Malachi started crying he was so sad that his dad's video game wasn't over and he wasn't playing with him yet. After he calmed down and finished wiping snot all over his face he looks at me with all seriousness and says, "I'm not tired yet." It took a lot of energy not to laugh pretty hard at that.

Here's the goal for tonight, keep him up until 11:00 p.m. and wake up him at 5:00 a.m. I'm not that excited about getting up with him at 5:00 but John's taken over on the keeping him up part so I'll get to go to sleep soon.

Our activities tonight to keep him awake have been, watching The Phantom Menace, playing a game, baking cookies, and now he and John are watching Wipeout that was recorded last night. Tomorrow morning, I think cartoons will be sufficient in keeping him awake. He has to fast though so I'm going to have to sneak a breakfast in there somewhere so I don't eat in front of him. We'll leave for the hospital at about 7:30 and begin our morning of testing.

The test is two hours long, so John and I plan on looking for some wi-fi and working on our bid list. So far what I've seen is pretty encouraging. Unfortunately we can't go to Algiers though because no kids over 5 are allowed because of inadequate schooling. That surprises me though, I would think they would have great schooling. It's possible that Americans aren't allowed at their schools though.

We're deciding what our priorities are for our next post, and mine is a good school for Malachi. I've decided that while house help and working would be great, I can do without for a couple of years. If I'm not working I'm much more likely to work on finishing my bachelors in who knows what after the kids have gone to bed.

Simon's rash is 100% gone and he seems to be taking the Zithromax really well. I hear laughter downstairs which is the best sound ever.

Good night people.

Seizure Free Today

Today I was on edge, but Malachi had a good day - no seizures.

When we woke up today we just chilled, Malachi woke John up at about 5:30 and I woke up at about 6:15. Simon slept in until 8:00 and we decided we should start moving for the day. John got Simon out of bed and I was taking care of Malachi. I was doing makeup in Malachi's bathroom when he was showering (it's hard for me to be too far from him right now) and I heard John say I should come look at the pattern on Simon's face. Here I thought that he laid on a stuffed animal for a long time, but when I got into our bedroom where they were I noticed the rash that was on Simon's torso last night had spread all the way up his head and his eyes were a bit puffy. We assumed that it was a reaction to the medicine he was taking for the infections.

I finished my makeup and called the Embassy nurse to inform her that the whole Roy family was coming to her office this morning because of Simon's rash and because we needed her to confirm with the neurologist what was going on today. I fed Simon a bottle, got Malachi's backpack with a snack and some homework together (felt like I was so prepared), and we left for the Embassy.

Once there the kids and I went to the Health Unit and John went to the Front Office (Ambassador, Deputy Chief of Mission and their admins), to inform the admin of the Ambassador that he might not make it on the trip this weekend that he was supposed to be control officer for. It turns out the Ambassador and DCM were in a meeting, so John went to talk to them and they were very supportive and understanding.

He joined us at the Health Unit where the nurse had agreed with what we thought about Simon and was trying to get a hold of the Pediatrician to see what he wanted to do about it. She took a look in his ears and confirmed that both of them were red and a bit swollen. The Dr. decided on Zithromax for three days - good. One problem solved.

While we were sitting in the reception area of the Health Unit, the Imaging center at CIMA called John's cell phone to make an appointment for Malachi's MRI, with contrast. We made it for Saturday morning. Throughout the day there were emails and phone calls and much confusion about what was going on. Finally John got a call from the neurologist mid-afternoon who said that we could do an EEG on Friday morning or Monday morning. They decided on Monday morning because the night before both tests he needs to stay up a couple of hours late and get up a couple of hours early. With this setup he gets to rest on Sunday.

So, in conclusion. No blood tests are going to be ordered right now, an MRI is scheduled for Saturday, and an EEG is scheduled for Monday. I need to bring Malachi's records from all of his other tests that were done a year and a half ago. I may do that tomorrow, or I just may wait until Monday since I'll need to pass the time during the EEG. Simon is doing much better, the rash is almost completely gone. Dad is sleeping happily next to me, and I'm going to turn in pretty soon.

What a crazy life we live.

2011 Seizure Count up by 2

Today when we picked up Malachi from his friends house after work we fell as he was trying to get into the car and when I looked back I noticed his eyes looked a little strange, and then he blinked, got up and answered our question of whether or not he was ok (he said yes).

Tonight shortly after he finished his sucker (he loves those btw Grandma and Grandpa), we were watching TV and he started making a noise. Neither John or I thought anything of it, but I glanced at him anyway and told John he was having a seizure. We got him on his side on the couch and let it run its course. It was about a minute long and even though I think it was a grand mal (now called tonic clonic) his body wasn't in it. It was just his head and face. His mouth was moving as well, and he was making a gasping like noise.

After he was done seizing he did a lot of groaning and he moved around a lot. By that I mean he got off the couch and was trying to walk. At one point he was sitting on the floor and moving forward. He certainly didn't seem alert at this time, and he continued to groan. Simon was around for all of this, and I'm sure he didn't know what to make of it. I think he wanted to play with Malachi during the seizure. Afterwards Simon still wanted to play with Malachi. Simon was grabbing hair and even was going for his eye lashes (he loves eye lashes). Malachi didn't notice because he was in the postictal state and was basically asleep.

Malachi in sleeping and John calling the neurologist.

John did get him to respond verbally to a question after he was all done moving around and had been still for a couple of minutes. We then let him go to sleep for the night. Every once in a while he would make a noise that sounds a bit like a hiccup.

John called the neurologist on his cell phone and explained the situation. The Dr said that tomorrow we need to go in in the morning and that we'll probably go see another Dr at another hospital. The first Dr., Dr. S. said we might need to add a second medicine. We'll see what testing is done tomorrow, hopefully it's not traumatic for Malachi. We'll both go to the appointment if our nanny is here before hand, I'll wait with Simon and then take a taxi if she's not.

Malachi's going to sleep with us tonight because I think it will wake John up if he starts seizing again since he usually makes noise. I think I'd sleep through it, but maybe not tonight.

We'll keep everyone updated on how he's doing tomorrow, and let y'all know what the Dr.s say.

Friends, Public School and Seizure update

My dear friend (yes I feel like I can call her a friend, no I've never met her, that's just how it is in the State Department Blogging Community) at A Daring Adventure is going through an atrocious situation with the Fairfax County Public School system. She closed comments on this entry in her blog and forced me to publicly chide her for being so apologetic to me and the community. http://adaringadventure.typepad.com/blog/2011/02/discrimination-sorrow-anger-tears-pain.html

She apologized profusely to me because she hadn't been on the blog to update the Roundup Calendar or announce my topic. I said in my roundup entry that I knew something was wrong, and I was right. To my sweet friend who is going through something horrible, please know that we in the community love you and would (should) never hold you to standards that we wouldn't hold ourselves.

I commend you for your restraint, knowing that I would have a very, very hard time holding myself to. When someone offends us it's damaging, but we dust ourselves off and move on. When someone offends/hurts/damages our children we become a force to be reckoned with. My own son has been singled out in our gated community as one who shouldn't be befriended. Three times he's asked/attempted to play with the children here and they've ostracized him every time. Every time I see the kids playing around the community, I glare and dream about them getting a little too close to the car as I drive out (honestly...yes, then I realize that's crazy).

All this to say, that I understand your tears, I understand your need for restraint, and I completely understand your absence the last week and a half. When reading your post about what your son is going through and the horrible treatment you have received from the F.C.P.S. system, I cried. I cried for him, and I cried for you, who after fighting as hard as you can, can only hold him, and do no more. I know that exact feeling, and it's one of the worst in the world.

On that note, I want to thank those who've given their support and prayers for Malachi and our family. So far he's still seizure free during the day (that we know of) so we're going ahead today as if it's normal. John and I will take Malachi to the neurologist this week, hopefully we'll be able to get in. Here's what will happen:

We'll tell him it was a minor event, over short, full recovery. He'll order blood work to check the levels of medicine in his blood, he'll probably order another MRI and EEG (for which I'll probably shave his hair off because during the last EEG application through his hair was really difficult (read this to understand, it's the story of the previous seizure, hospitalization, tests, etc.)). He'll increase the amount of medicine Malachi receives, or add a second medicine, and send us home. Malachi may never have another seizure again, he may have another one on Tuesday. That's one of the worst parts of this, the not knowing.

I'll keep y'all updated on how things go. And for goodness sake somebody please sign up for the Roundup!

My boy

My wonderful and amazing five year old, who is so smart and so sweet, to no fault of his own, can really make me bawl.

Yesterday on the way to the Embassy to get John I heard a familiar noise from Malachi, and although he makes it on his own sometimes looked back to check on him. He was indeed having a seizure. I was stopped at a light but knew I needed to pull over. I said a very quick prayer and looked over to the lane next to me, it was empty - not normal during rush hour on this road - thank you God! I told Malachi that he was ok and that I was going to pull over and get him out (for myself of course, he was unconscious during his seizure). I did exactly that, there was an empty parking lot very close to me, so I pulled in and without even turning the car off, grabbed my cell from it's uber convenient spot to time the seizure and got Malachi out very quickly. I laid his head in the crook of my arm with his body on his side. I looked at my phone to see the time and to call John. By the time I looked back down at Malachi he was closing his eyes and had stopped seizing. I think total, this event was about 30 - 45 seconds. It was very short, with no drool, and was by far the least traumatic seizure for him. Malachi didn't even cry which is abnormal. He used to scream after a seizure.

John answered the phone immediately, probably thinking I had arrived. I told him Malachi had, had a seizure and then I started crying. Between sobs I told him that it was short and he was already done. I got Malachi to respond to a question of mine, told John to call our Embassy nurse (he couldn't get a hold of her), and that I'd be right there to pick him up. I drove to the Embassy often watching Malachi in the rear view mirror. He was definitely still in the postictal state (Wikipedia: The postictal state is the altered state of consciousness that a person enters after experiencing a seizure. It usually lasts between 5 and 30 minutes...), and I was also in the postictal state (read: bawling, controlling myself, bawling, etc.). John was waiting for us outside and when I stepped out, he gave me a big comforting hug and took over the driving.

Over the course of our drive home (about 25 minutes) he had fully recovered and won the "race" to the door. I was a mess the rest of the night, John was my rock, Malachi was showing no sign of any seizure. He had dinner, watched a bit of T.V., and went to bed on time. I hadn't been able to get a hold of the nurse, but she called at 10:30 after she saw our missed calls. We told her what happened and that since he recovered so well, we'd keep an eye on him this weekend, but would wait to call any Dr. or go anywhere until Monday unless he had another event this weekend.

I had a difficult time going to sleep last night, and when I woke up at 4:45, my mind ran right to last night's events. I couldn't go back to sleep.

I thank God that Malachi's ok. I thank God that I was able to pull over, and that his seizure was so short. I thank God that his recovery was full and that it happened in the "right" amount of time.

So far today he's been just his normal self. I, however, have been a little different. I actually cuddled with him for the duration of a movie. I wouldn't normally do that, but I was just thankful to have my boy in my arms.

What does that do for bidding (getting our next job), you ask? It means that we'll probably be going to a more expensive (read: no house help/working for me) country that has great medical care, some possible countries are England, Sweden, Germany and Australia. We get our bid list later this week and we'll hand it in shortly after that. I don't know how long it will take to get our assignment after that, but I think (hope) we'll know by the end of March where we're going.

Pediatric Neurologist

Today was a check-up with Malachi's new Pediatric Neurologist, Dr. Lavenstien (Dr. L). He had a second year resident with him also who was very nice.

Both Dr.'s were very impressed with Malachi's development and are confident that the seizures aren't inhibiting that. Dr. L said that we're going to be watching Malachi for any seizure activity over the next six months. If we see any hint of activity during this time we're going to do a 72 hour EEG. They're hoping to get him during a real deep sleep to see if they can catch anything (with the two previous EEG's they've caught nothing). If we don't see any activity we'll go see him in six months.

John and I noticed that Malachi's sleeping has decreased the last couple of weeks. I asked the Dr. if this is a side effect and he confirmed that it is. It doesn't become a concern unless Malachi starts sleeping fewer than eight hours a night. So far he's still doing that. It's just hard for mom and dad to get up at 5:50 am like we did today.

The Dr. seems unconcerned by our impending move. The city we're moving to (again, to find out where check John's blog) has a population of 11 million. He seems confident that if there isn't anything in our city to take him to that there'll be something close. The medicine that Malachi takes (Keppra) is made by 22 different companies world wide and will be very easy to access.

If Malachi gains 15% body weight then we need to increase his dose (4 lbs). He hasn't gained a pound in over a year it seems (this did not concern the Dr. - he's a pretty mello guy) so this isn't something I'm very concerned about.

Apparently 70% of kids that have Epilepsy don't ever find out why. The cases that are like that who go seizure free for a couple of years on medicine have a very good prognoses. That said...if Malachi goes two years with no seizure activity on his medicine then we'll look at weaning him off the medicine to see if he's done seizing.

Please pray that Malachi has zero seizure activity. I want to never see him do that again. That is my prayer for my son. I love him so much, and I don't want to see him go through this again.

Thank you to everyone who's been so supportive over the last few weeks. We miss you all so much and love you all so much. And believe me, I too wish that you could just hop in a car and come over to hang and chat. I really miss y'all so much.

Blessings to you all!

Can't even take off a bandaid anymore

******Sorry about the delay in posting this. I started it a while ago and just finished it.******

Most everyone knows this already but for those that don't, Malachi was in the hospital for two days. On Wednesday morning he had his worst seizure yet. He seized for about 3 1/2 - 4 minutes. After that he was gargling and struggling for breath, he turned blue around his lips. He normally would be calm for a few seconds after seizing and then cry for a bit and then be passed out for 20-30 minutes, but it didn't happen that way this time. He calmed for a bit, then cried, then calmed, then cried, and this cycle happened maybe six times. He also vomited during that time. Right before he vomited I called 911 - this was a very unusual seizure process and with the blue lips and all I decided it was a good time to call the EMTs. We got to the Pediatric ER at about 10:00 at Inova Fairfax Hospital. John was on his way, he left work at about 9:30. Unfortunately I took the car keys so he couldn't go home to get the car first.

By the time we got to the ER he was fully concious and seemingly fine. His vitals checked out, and if someone was just looking at him and didn't know his history or what happened earlier that day they would think us crazy to have him brought in. However, they did know what happened and they did know his history and it was decided to have him admitted after the ER Dr's consulted with the on call Pediatric Neurologist. Before he went upstairs they decided to start the testing and get his bloodwork done there. Having the IV inserted into his hand to get the blood was the most traumatic thing I've seen done to him. They had to swaddle him to keep his body still. He was crying out for me and asking me to hold him, it was so hard for me to not weep with him.

After he was admitted at about 12:30, his history and vitals were taken by a Resident and during that time the Attending came in to check him out and tell us about the system of the hospital. He told us that the Drs on the floor were going to confer, make a plan and let us know what it was. A couple hours later we still hadn't heard the plan, but someone came in to do something - I wish I could remember what. John probably remembers though.

After a while more, someone did come in and tell us the plan. The pediatric neurologist had a colleague of hers look at the EEG done one Tuesday (the ped. neurologist on call just happened to be from the office we went to for that one) and everything looked normal. They wanted a more in depth look into his brain though, so they called for an other EEG. They wanted to try to get it done over night, so they were chasing down the technician who does that to make sure he didn't leave before he started. They also said that they were ordering an MRI for the next day. He would need to have an IV put in. After that was told to me, I decided to go home and shower and change, I was still in my pajamas from the morning. I took the metro home, showered, changed, grabbed p.j.'s for me, and clothes for Malachi to leave the hospital in (he went in the ambulance in nothing but his underwear). I also grabbed his blankie and elephant for comfort.

When I got back they hadn't put the IV in - dang. But they did it in a way that I'm very happy about. The Pediatrics floor has a program in it called Child Life. There's a staff working on the floor during the day to man a play room and help kids with the procedures that are going to happen to them. A young woman, Liz, came in to tell Malachi about IV's and have him do one to a doll that he named and colored a face onto. After this we went into the "Jungle Room" to have the IV placed and the Liz came in to help. It was such a different experience. He did cry a bit, but only a little bit. I was so, so thankful for Liz.

After that we ate dinner, and shortly after that the EEG technician came in. He came in at about 6:30. What a horrible experience. The leads for this over night EEG were glued onto his head. To do that the technician had to use a long tube from an oxygen pump on the wall and would dry the glue with that, except instead of just letting the air blow on it, he would drag the end of the tube on the wet-glued gauze, but it was quick and a lot of times he hit Malachi pretty hard. Malachi was miserable and it took him three hours. He would often blame Malachi for a lead not being on right, or coming off and while sometimes Malachi did move and cause it, it was apparent that often it was his fault. It made the experience very frustrating for John and I too.

After that was done, John went home to get some work done and to sleep. Malachi and I tried to sleep, and Malachi did alright. He slept from 10-2 when the nurse came in to hook up some IV fluids. He actually slept through that, but then a roommate came in at 2:15 and woke him up. The poor boy was young and had had multiple seizures that day. The ER had so over medicated him that he couldn't sleep, or walk and his speach was slured. He didn't sleep at all and Malachi didn't fall back asleep until; after 4 He woke up at 6am on Thursday.

We waited only a little bit for the nurse and Pediatric Neurologist to come see him. The neurologist said that there wasn't any seizure activity recorded on the EEG, and he passed her neurological exam. We were just waiting now for the MRI. At that time, he wasn't on the MRI schedule, but the DR on the floor made it her personal project to get him in there Thursday.

At 8am Malachi's nurse came in and said that his MRI was going to be in about an hour, so they're trying to find the EEG technician to get the leads taken off. He came in about 15-20 minutes later and Malachi started crying immediately. I promised Malachi that he wasn't going to use the air that time. He saw Malachi's misery and got the leads off pretty fast. He scrubbed some of the glue off, but couldn't get it all. That was fine, I had my baby back looking mostly normal! Almost right after he was done with that patient transport was at the room ready to take Malachi to MRI.

So he sat on my lap on the wheel chair on the way down to MRI which was on the 1st floor, but all the way in the back corner, it felt like a basement. We had to wait a bit, but then an MRI technician came to talk to us about the process. We then waited a little bit longer for the room to be emptied. When I got in, the anesthesiologist explained that he would put the anesthesia in through the IV and it really didn't take long for Malachi do go down. It was actually a very disconcerting thing for me to watch.

He was taken into the MRI room and I went to get breakfast. I bough a bagel and banana and brought it to the waiting room. Being alone there was the first time I let myself get emotional. So I allowed myself a little break down. I didn't want to get too emotional because I knew that they would bring him out any minute and I didn't want him to see me that way.

We went upstairs after being in Pediatric Recovery for a few minutes. Malachi kept his apple juice down really well and then after a bit of a rest ate his cheezeburger almost all up. I didn't want him to eat the whole thing because I didn't want him throwing up, but he never did. We waited for a couple of hours and the MRI showed nothing, so after that we waited for just a little bit longer and the medicine they ordered came up. I gave that to him and then we were released.

It was so nice to pack up and go home. I had to go down to the pharmacy to get his Keppra (anti-seizure) medicine. But as we were sitting there waiting I was falling asleep. When we got home we had a small snack and went to bed. We were both so exhausted.

I'm sorry if this sounds jumbled, or if there are simple grammar mistakes. I'm very sleepy still from pregnancy and we haven't slowed down since we got home (Morroccan dinner on Thursday night, trip to the Zoo and Baby shower on Saturday, large shopping day yesterday, and today we're puppy sitting - EXHAUSTING!).

Monday is Flag Day! That's the day we find out where John's being posted. I wont be posting the location on my blog for a week. You'll have to check out John's Blog in order to find out. You should check it out anyway. You'll find out lots of good information on it.

Less than a day

until his EEG. We're supposed to be in the office tomorrow at 8:15 to fill out paperwork for his 8:30 appointment. John and I have been talking to him about his appointment, telling him that he needs to answer all questions they ask. I told him they're going to put stickers on his head and look at his brain.

With his recent aversion to anyTHING medical and large tears at the sight of anyONE medical I thought it would be better to prepare him. Hopefully tomorrow wont be as hard as I expect because of the talking about it. My friend Bethany will be picking us up tomorrow morning to hopefully leave by 8:00. I can only let him sleep tonight for five hours and I have to keep him awake on the way to the appointment. I'm so thankful that Bethany is going to drive us so I can do that. I'm also thankful that it's only about a 10-12 minute drive away so we're not in the car all that long.

I'll update tomorrow after we get home and Malachi is sleeping peacefully.

Yet another

Malachi had another seizure today. This is his third seizure, but it's the first I witnessed. It was not an easy experience. It was full of contradictions. It was the shortest seizure yet, but it was the longest recovery time. He gasped for air during it but wasn't turning colors, his eyes were open but I'm not convinced he could see anything. He had a very hard time waking up, and wouldn't open his eyes to look at me, so I called 911. Six EMT's came out - but four of them left after they say that Malachi was mostly allright. They checked his O2 sats (the amount of oxygen running through your blood), and heart rate and they both checked out fine. Even getting the little band-aid like thing around his finger was an ordeal and since he was fine by the time then and his stats were good I decided not to take him to the hospital. The EMT and I I agreed that keeping him calm and stress free was our main objective and taking him to the hospital would bring the opposite results. By the time they left he was shy, but mostly normal.

Shortly after they left he asked to watch TV, I was reluctant to do that since he was watching TV when it started. But I relented, and shortly after he started watching he started eating his lunch again (also something he was doing when it started). After eating the rest of his sandwhich and some of his chips he was done. When I told him it was time for a nap he asked for his clothes back on (they came off to help him cool after the seizure) and then he ran to his room and onto his bed. This is not normal, not normal at all. However at that time, it was the most abnormal he was and I didn't think it was a bad thing, so I let it slide. I certainly wasn't going to make him rebel. :)

Since he got up from his nap he's been normal, but every time he loses his balance, or I can't here him, or anything weird happens, I think he's going to seize again. Please pray for him and for us. I don't want to live my life in fear - and that is definitely a road I'm heading down.

So much good is happening in our lives that this feels so bad. If it wasn't for John's new job or our pregnancy maybe this wouldn't seem so bad - and I know there are kids with much worse problems, but this is going to kill me. Watching the seizure this time is the hardest thing I've experienced with him. Praise God he doesn't remember it.

John asked him if something happened today and he said he was watching TV and fell down (true) and then mommy picked him up (also true, but I think he means the time after his seizure). So he doesn't remember the seizure. Thank you Lord!

Please also pray that we get some answers at his appointment next week. His EEG is scheduled for next Tuesday at 8:30. I can't let him sleep for more than four or five hours the night before and he can't sleep on the way to the appointment. My poor baby.

Otherwise - life is good. :)

Another Seizure and Packing Up!

Malachi had another seizure on Tuesday. I was at work when it happened and the babysitter called to let me know. Thank God I work less than half a mile from home and the babysitter let me use her car. I was home very quickly. After I started holding him he calmed down very quickly. The Dr.'s office was closed for lunch at this time, so I left a message for the nurse to call back (which btw cost me $15 - stupid). The Dr. requested that we come in so we did. He was doing fine by this time and he passed her exam.

She said we need to make an appointment with a Pediatric Neurologist as soon as we can in D.C. I made the appointment and John wants to see if I can change it because our new insurance starts on July 5th and that's only a bit over a week after the appointment I made. Our new insurance is amazing and we don't anticipate having to pay anything for the appointment with the new insurance.

Today I have some girlfriends coming over to help me organize the house. I would really like my house to be ready for pack out (the day the movers come over) before we go to MN because when we come back from MN we're very busy.

Tonight my pastor's daughter is graduating High School. I really want to go, but we still have just one car and I don't now when John's going to get home from work. It's his last day there and who knows what he's going to have to accomplish today before leaving. He's really enjoyed his time at Benny Hinn Ministries. God has given him a lot of favor there and it's been a big blessing for us.

I've been quite emotional the last couple of days. I hope it gets easier when I get out of Texas because I don't like being a depressed and distant wife/mother.