Free of Medicine

Evan has been on medication all but 19 months of his life. That includes the first twelve months and then a period of seven months a few years later. Here's a little timeline of Evan's medical history.

October 22, 2009, days before his first birthday: First Seizure

This was a three-hour seizure. It was ugly. It was awful. The EMTs didn't realize he was still seizing in the ambulance because the seizure had changed. (I think they were just going by what I said.)  He was no longer convulsing during that hour-long ride to the hospital. His seizure had changed. In the ambulance, his legs were "bicycling." He was in the hospital five days, including his first birthday. 

That hospital stay was hard. The first few days were in the Pediatric ICU. I was rather disappointed by the care we received because I compared it to Meghan's Cardiac ICU experience. (They were busy with flu season. Evan wasn't priority.) He was completely sedated so his body could recover. However, when he woke up he was hungry but couldn't eat. And once he was awake, they awoke him every couple of hours to make sure he was okay. (This is good from a medical standpoint...but boy, was he grouchy.) Evan constantly got tangled in his tubes. His arm was splinted so his IV would stay safe. (It didn't. At one point the fluid dripped out...but all over his body instead of in his body.) He had a diaper rash that was left untreated for many hours. Overall, he was a very, very sick and miserable boy. During that stay he also developed a body rash which matched his sister's. 

April 18, 2012: Off Medication

Evan's EEG's came back "clean" meaning they didn't show any seizure activity during the EEG. He was no longer on antiepileptic medications.

November 2, 2012: Second Seizure

This seizure was so different than his first. Thankfully I still recognized it as a seizure. Not all seizures are convulsions. This one wasn't. He repeatedly rubbed the carpet-vigorously and was nonresponsive. He has been on medication ever since. Since then, I believe only one EEG showed seizure activity. His last one was "clean."

June 2016: Begin Weaning

To be extra cautious, Evan's doctor began a long and slow weaning process.

November 30, 2016: Evan took his final dose of medicine. He is now MEDICINE FREE!

So now we continue to pray for Evan's health and praising God for the way He protected Evan.

If you want to read more about Evan's seizure history, you can read about them here, but you'll want to keep clicking on "older posts" to get back to 2009. 

Evan's EEG Results

Back in October, Evan had an overnight EEG.

We really didn't know the detailed results of the EEG until last week when we had an appointment with Evan's neurologist. Before we were told that there was seizure activity and continue with the medication as we had been doing.

(On  a side note, isn't he something? He literally rolled around in the mud to achieve that look at his sister's prompting.)

They performed multiple tests on Evan such as the strobe light and blowing. He went to sleep a bit later than usual since it was a strange place.  He had seizure activity while he slept.

The report said,

"At 8:17 p.m., while asleep, there was a sudden burst, lasting 1 second, of high voltage spike and slow wave discharge occurring predominantly on the left and spread to the right and vertex. It had a 4 Hz frequency...an no external event."

The no external event just means he didn't display seizure activity in his body...it was all in his brain.

Evan has been seizure-free since November 2012. He had been off his meds for seven months. His first awful seizure was in October 2009, days before his first birthday (spent in the hospital). Though he is seizure-free, it is with medication.

At this point, Evan will continue with his meds. In six months, the doctor may consider weaning him from the meds. However, if he has another seizure an MRI will be used to look at his brain.

If you have questions, feel free to ask. We will answer if we can.

Evan's EEG

Last week Evan had an overnight EEG.

 I picked him up from school at 11:30. He ate lunch in the van on the way to the hospital. I wonder if our Garmin took me the best route...it was all back roads to the city. Evan actually recognized a familiar area before I did. That's my observant boy.

 I had a bag of things for entertainment, including a new big LEGO set. I was told we (both of us) would not be allowed to leave the room. I was not aware he would not be allowed to leave the bed other than for the bathroom.

While he was hooked up to the leads (with awful smelling glue) and wrapped up, he watched a movie. Later, he spent a long time with the LEGOs. When he asked to watch another movie, I couldn't say no. He had been such a good sport.

 The leads' wires were wrapped in gauze. Evan called it the elephant trunk.

 This is why he had to stay on the bed. While the EEG took place, they recorded video. If he had any seizure activity (not the same as a seizure), they will know what triggered it.

 After not quite enough sleep, in the morning they removed the leads.

 He could have been to school by 11 or so, but the glue in his hair was bad.

 It was worse than this photo shows. It took four shampooings to get MOST of the glue out of his hair. After that, he had a haircut.

 We could see the bell tower from the room. So pretty.

We don't actually have results yet of the EEG. We should learn more this week.

News...

Yesterday, after three years and a few days of being seizure-free, Evan had another seizure.  This was a short seizure, so it wasn't nearly concerning as his first (and only other one).  Nor did it require a spinal tap, breathing tube, temporary paralysis, or a lot of tears.

I was about to make a bottle for Esther, when I heard a strange sound.  Evan was rubbing the carpet vigorously.  I went over to him, and his eyes were off to the side, like he was trying to look out of the very corner of his eye.  He could not look at me or speak.

No "convulsions."  This was a different type of seizure than what I had previously experienced, yet I still recognized it (thanks to some seizure education).

Eventually, he was able to turn his head and look at me out of the corner of his eyes.  The seizure was short, maybe a minute or two.  (Blessing #1)  Then he promptly went to sleep.  (A seizure is very hard on a body.  It was once likened to a marathon to us.)

It was Derek's Friday off.  (Blessing #2)  This is huge when you have more than one child and one needs to go to the ER.  He had been to the dentist and grocery store.  He was checking out at the grocery store.  The neurologist's office eventually called us back and sent us to the children's hospital emergency room.  Evan's neurologist was even on call, so we would see him. (Blessing #3)  (Really, I should have known to just take him to the ER.  Apparently, I was a bit rusty in all of this.)

I packed an overnight bag for the two of us.  We've been through this enough before that we understand that surprises happen, and it's good to be prepared.  It was about 11 o'clock, so we had two apples, pretzels, and rice cakes to hold us over.

We arrived around noon, and eventually made it home in time for dinner.  They even gave us some food right before discharge.

If you are interested in seizures, it was a complex-partial seizure.  Complex because of the repetitive movement, in this particular case rubbing the floor.  Partial because he lost consciousness when he could not respond.  Unlike his first seizure, I was able to observe this from start to finish and report it to Dr. B, which is crucial for proper diagnosis and medication.

Yes, after seven months without medication, Evan will return to using it twice a day.  It really is only a word-a name-but at this point, one can appropriately use the term epilepsy to describe this medical condition since he has had two unprovoked (not fever, concussion, meningitis...) seizures.

You may not understand this, but it does not feel like a big deal to me.  After having Meghan and Evan both in life-threatening medical situations, I am THANKFUL to know that not all of Evan's seizures will be three hours long and endanger his life and mind.  And really, we knew this could happen.  This is not, or at least should not be a surprise to us.  Certainly, our omniscient Father knows all about Evan and his brain activity.  We will take precautions, but we are not going to live in fear.  There is no need.  And that is the real blessing in all of this.

I need to remember that my son's identity does not come from any medical problem.  (You can read my thoughts here on identity.)  Evan, including his brain, is fearfully and wonderfully made.  And for each day, I am thankful.

You can look at the seizure link in the sidebar to look back at some of what we went through with his initial seizure.  It is likely there are enough posts that as you scroll down, you'll need to hit "older posts."

Tidbits of News and BIG NEWS

1. Esther seems to be edible.  This is not the first time an attempted photo shoot was interrupted for a snack.  Evan really likes her arms.  (I personally can't help but to kiss those cheeks.)  And he is not kissing her...he is pretending to eat her.  

2. Meghan is officially registered for kindergarten at the local charter school.  She is so excited.  It is weird to have her growing up so quickly!

3. Evan is registered for preschool next year at the same school Meghan has attended for the past two years.  It's not big news, but thought I should mention it.

4. After SEVEN dentist appointments, my tooth has been saved from extraction.  Instead of porcelain, the crown should be made of gold!  The root canal and crown were paid for out-of-pocket and were quite costly.  (I believe the first car I purchased cost about the same as this tooth!)

Ready for the BIG NEWS???
5. Tonight, Evan had what we hope is is last dose of Keppra, the anti-seizure medication! 
Now that it's here, I may be more nervous than I thought...

Evan's EEG and Update

I had intended to share the timeline of keeping the sick-with-a-cold (and last night low-grade fever) Evan awake.    However, I am just too plain tired to do so.  I fear we are all getting sick.  Esther now has a runny nose.  Meghan has a cough.  And I want to go to bed.  (In fact I was in a bed for a bit before dinner...)  Though up at 5:25, we were gone from 7:30 until 3:15 today.  These appointments are not exactly fast!  We picked Meghan up from preschool in the nick of time (and she attended before care for the first time).

At 9 o'clock Evan had an EEG.

 They wrap the nodes so they don't fall off.  It scratched Evan, he said.

 He was not miserable in the photos, just tired and focused on the TV that was a foot from his face.  Evan fell asleep about 15 minutes after the initial test, as needed.  That is why it is a sleep-deprived EEG...so the patient goes to sleep.

At the conclusion of the EEG, we had less than an our before the appointment with Dr. B.  Evan remembered the trains on the first floor.  (He can't be talked out of his coat and hood, even when we did not go outside.)

 Dr. B. said his EEG was beautiful.  Not only was there no evidence of seizure activity, his brain activity was developing and maturing as it should.  Today we begin the slow weaning of his medication.  In 6 weeks Evan will be medicine-free!

During these next few months we will hope and pray that another seizure does not take place.

It was 1 o'clock by the time we left the hospital.  We stopped for pizza.  With Evan's EEG nap, he had perked up.

Thanks for keeping Evan in your prayers!
To see Evan's first out-patient EEG go here.  To read more about his health history see the label "seizure" in the sidebar.

Evan Update

Evan is getting to be so tall.  He tends to be very sweet, though hunger and sleepiness hide that sweetness.  He still asks for kisses and hugs...while other times refusing them.  He loves his family deeply.

For the past month, Evan has been responding with, "My pleasure!" when thanked for helping.  I know I don't say it often, but suspect he picked up on it after hearing it just once.  He says it a few times a day!

Evan has been cleaning up toys so much better these days.  He is beginning to do this on his own, too!

One of the cutest things ever is hearing Evan "speak" for Esther.  I guess a while after Esther was born I would occasionally use my "Esther voice" to pretend she was saying good night to the children or maybe to thank them for singing to her.  One of the cutest things ever is hearing Evan "speak" for Esther.  He uses a high, quiet voice to talk for Esther.  It puts a big smile on my face every time!

This morning Evan ZIPPED HIS COAT all by himself!  That was very exciting!  We were all very proud.  This morning after he greeted the preschool coordinator, I suggested he tell her what he did this morning.  Then we also told Meghan's teacher.  Her teacher also made a big deal of it and gave him a sticker.  (Can you tell why he wants to go to preschool?)

In early March Evan will have another EEG.  He has been seizure free since October 2009.  Would you pray with us

• that the EEG will show no seizure activity.
• that he continues to be seizure free when he goes off his medication.
• that Derek and I are able to sleep deprive Evan enough for an accurate reading.  (It's necessary that it is a sleep-deprived EEG.)

Here's our big boy!

Thank you for praying!

Some Plans

We met with Evan's neurologist this week.  He was pleased with Evan's physical development and how sturdy our boy is.  He did suggest a speech evaluation for Evan.  This did not surprise me, though I'm not sure if he will qualify for being in need of therapy.  (There are no big, obvious concerns like Meghan had.)   

Evan's EEG was normal.  Yea!  With having only had the one seizure, some doctors wouldn't have Evan on anti-seizure medication.  However, with the seriousness of the seizure, he has kept Evan on Keppra for the past year.  This will continue for another eight months, and then we will meet again.  With no additional seizures, the current plan is to begin weaning Evan from his medication in 8 months.  (This is a long process.)

You might wonder why I never use the word epilepsy when discussing Evan.  Epilepsy does not mean a certain type of seizure, but to have epilepsy means that you've had two unprovoked seizures.   Evan has had one status epilepticus seizure (Epilepsy Foundation's definition: severe, potentially life-threatening non-stop seizures, not always related to epilepsy; status epilepticus can result from acute brain injury).  Even after seizing for hours, there is no brain damage that we can tell.  (Meghan had two febrile seizures, but febrile seizures are due to a fever, so that is not a big concern-nor is it epilepsy.  When Evan started seizing, I thought I knew what was happening based on the experience with Meghan...I was wrong!) 

We still use monitors when Evan is sleeping.  We still give Evan medication twice a day-and have alarms to remind us.  We still instruct his new caregivers about him and what to do in case of a seizure-but emphasize that he has been seizure free for a year.  I have started carrying his Diastat (a med that is supposed to stop a seizure if the seizure continues for more than 3 minutes) in my purse since it is a pain to always have his backpack with us. (When we take Meghan to preschool we're only gone for about 20 minutes, and that includes walking Meghan into her classroom.)

With all that said, really Evan is just a typical 2 year old.  We're just typical parents, thankful for our days together.  We know God has blessed us greatly with these two lovely children he has trusted to our care.

An EEG

Wow, can you believe it's been a full year since Evan's seizure?  (If you are new to reading about our family, Evan had a three hour seizure on October 22nd of last year.  You can read about Evan's seizure under the label "seizure" which is for all seizure-related posts.)

Evan did a great job not messing with the nodes.  The television was incredibly helpful in that matter.

It was time for another sleep-deprived EEG.  (An EEG just measures the electricity in the brain.  It looks pretty scary, though, huh?)  Though he was definitely sleep deprived, he did not sleep though he was prepared to with his blanket, pacifier, and a dark room.  Since he didn't sleep, they are hopeful it was accurate.

We're hoping there was no seizure activity within his brain.  (There can be seizure activity without a visible seizure.)  However, we have not yet heard the results of the EEG.  Even though Evan has been seizure-free for one year, his seizure was severe enough that his neurologist will likely keep him on his medication even if the EEG showed normal brain activity.  It is impossible to know if Evan is seizure free due to medication or if he just is seizure free.  But God knows, and God has plans for Evan!

We are praising God for both of our children's health.  

Neurologist Visit

A week ago Derek and I took Evan to see his neurologist, Dr. B.  Honestly, I know we are very blessed to have this particular doctor.  I know others waited months to see him, but because Evan was his patient in the hospital, it was all very fast for us.

There was no EEG unlike last time.  (You might remember that EEG showed normal brain activity.)  Since Evan has been seizure free, we only upped his medication a little bit.  He is now on the lowest possible dose of generic Keppra for his weight.

Sleep-deprived EEG in November 2009

We will have an EEG in about five months.  Then in about six months we will see Dr. B. again for a follow up appointment.

The best part of the appointment was some clarification for me.  When we were sent home from the hospital, we were told to get a prescription for diastat.  In case of a seizure, we are to give him this medication (Valium) as a suppository.  We have the prescription, but I truly had no confidence in it bringing Evan out of a seizure since his last seizure lasted for about three hours, with medical intervention.

I asked Dr. B. about this.  He explained that the longer a seizure happens, the harder it is to get a person out of it.  That is why it's important to administer the diastat after just three minutes of seizure activity. I was happy to hear that it will be effective for Evan.

Evan still makes funny noises in the night once in a while...and one of us still goes in to make sure they are just funny noises and not seizure noises.  (During Evan's seizure I heard him making noises, but that is not unusual for him, so I didn't check on him...for a very long time.)  It's always a relief to know he is okay.  It's funny how my view of seizures has changed...when I saw Evan having his seizure, I thought, "No big deal.  It's just a febrile seizure like Meghan has had."  But that was one long, horrible morning I do not want to repeat.  So I thank God that Evan is seizure free.  Only God knows if he has had his last seizure.

Though Evan still hasn't gained much weight since October, he is healthy and usually quite happy...unlike November, December, and January when he was teething or sick most of the time.  We've weaned him off his pacifier (again!) except for sleeping.  Before his seizure he only used it for sleeping, but it helped make him happy...so we allowed him to use it during play time, too.

Evan Update

Our little boy has been sick. It feels like he has been sick since his seizure in October. In reality, he has been sick off and on since then. It took him 3-4 weeks to fully recover from the seizure and the side effects from one of the medications. Then he got a bad cold in December, while teething. Earlier this month he had a stomach virus and he's had a cold for a while now.

Frankly, he is tired of this and so are we. See that pacifier? Before his seizure he only used it to sleep. Not now. Now it helps him to be somewhat less miserable. I miss his happy and content personality. I miss this cheesy smile. In the past week he has been sleeping somewhat better, and for that I am grateful! Since the end of October, we have only had a few days when he has truly been himself.

Evan hasn't been eating well with all this illness. Some days he barely ate, though he has had a hearty appetite for milk. I've been concerned about his weight. Monday we saw his doctor for his 15 month check-up. We also had it as a sick appointment, wondering if Evan had an ear infection. He doesn't have an ear infection but he did get an antibiotic for his chest congestion. We have to return on Friday to see if he if the chest infection is gone.

As it turns out, Evan has lost a little of the weight he had gained since he turned 12 months, so he is at the same weight (21 pounds) as he was at 12 months. Dr. G is not concerned since he has been so sick, but expects Evan to gain some weight as soon as he is healthy. FYI, he is at the 50th percentile for height and just below the 10th percentile for weight. (That's a bit amusing since Meghan is about the 10th for height and 50th for weight.)

When Evan has his shirt tucked in you can see how thin he is.

Evan enjoys taking his antibiotic. It tastes good. We have been having a lot of TROUBLE giving Evan his Keppra, the anti-seizure medication he takes twice a day. He spits it out, even when we try to put it in the pocket of his cheek. There have been days when we don't know if he has gotten ANY medicine!

Evan's EEG

Friday was Evan's EEG. He had to be sleep deprived, and you can trust us that he was. We put him to bed late, woke him early, and Derek sat in the backseat so that he did not nap on the way to the hospital. With a 45 minute drive (plus another 15 to drop Meghan off at a friend's) Derek had his work cut out for him to keep Evan stimulated. The purpose of the sleep deprivation is to stress him out a bit and to make sure he sleeps while there.

First, they drew on his head, measuring. Then a gel was placed on the spots as an adhesive of sorts, I think. They put lots (my guess is over 20) leads around his head for each area of the brain. (If you have ever seen and EKG, it's the same thing, just on the head.) Then his head was wrapped in gauze to keep the leads on. He hated every minute of it!

This was the final result. Can you see Evan? He is sleeping, face down, beside me, but with his arm around me. Yes, his hand is awkwardly holding onto my pocket. I promise that's how he wanted it.
















This is the "after" picture. Sorry it's a bit blurry. The lighting was poor. After being sleep deprived, he only got a short nap. You can see the gel in his hair and even some blue marks on his forehead and scalp. He was cleaned up before we left.











We left our house before 9 AM, in time to drive to our friend's house to drop off Meghan and get to the hospital by 10:15. We were at the hospital until close to noon. We had lunch (yum!), and then headed off to see Dr. B. Evan's neurologist. We arrived at Dr. B's office a bit early, but had a good, long wait to see him. (In the meantime Evan stunk up the waiting area enough that someone walking in commented about the smell. We promptly took him to a bathroom and changed his diaper.) We made it home by 4:30. Whew!

Although the pictures and narrative might be fun to read, I'm sure you would like to know the results of the EEG.

The EEG was normal! That's a good thing. Even with meds, abnormal electrical/seizure activity CAN show, though no activity does NOT mean that Evan will be seizure free. Evan could still have another seizure, but there is a chance that he won't as well. He is likely to be on meds for 1-2 years (without seizures). I hope it gets easier to give it!

We're not sure what type (generalized or partial-which indicates what part of the brain the seizure took place in...or BOTH, since his seizure did change in how it looked. I do think when I first saw Evan it was generalized, the tonic-clonic type with stiffening and relaxing which looks like convulsions. But later he changed.)

What we can say is that he has had one episode of status epilepticus. Status epilepticus just means a seizure lasting more than 30 minutes.

FYI, it's not epilepsy until there is a second seizure. With the severity, it is still likely that a second one could happen. We cannot know if the medicine is doing the work or if Evan just isn't having another seizure.

We have a suppository medication for Evan in case of a seizure lasting more than 3-5 minutes. We have one in the diaper bag and another in the closet. Evan will continue to use the same amount of medicine that he is currently using for the next six months. As he gains weight, it will be a way of weaning him from the medicine. We see Dr. B again in six months, too. (Of course, if we have another seizure, this would likely change.)

We're thankful for a good report.

What's Up, Doc?

We are all doing well here. (Evan even slept mostly through the night twice this week.) It seems that we have adjusted to the time change. Evan is officially off the cranky medication. He had been getting 4 ML twice a day, so it's a big difference in his behavior. However, he is still clingy. Yesterday he was on my hip or lap much of the day.

Yesterday he awoke with a rash. (No this picture doesn't show it.) We think its from his immunizations last Thursday and not a repeat of the viral rash he had before. Though the doctor didn't see him, he thinks the same thing. Honestly, I don't want to take him to the doctor with the chance of him (and the whole family) getting the flu. Everyone seems to be getting it. The rash is worse today, but Dr. G said it's likely to last 1-3 days and to keep an eye on it.

Evan now has four teeth. At this age Meghan still had ZERO.

Yes, that is a whoopee cushion in the photo. (My dad's idea of an ideal gift!) Meghan loves it, and goes around saying, "Excuse me." She will even put her stuffed animals on it to make it "tooty." Evan blows his lips for it. They both love it. This mom has no defense.

Tomorrow I will spend from 9 AM to 6 PM at a SEE seminar. It's for Seizures Epilepsy Education in Delaware. Sounds like loads of fun, huh? More like information overload. The day that Dr. B (the neurologist) met Evan, he suggested that I go. I'm sure I've said this before, but because of the severity of Evan's seizure, it is likely to happen again, despite a couple of seizure-free weeks (but he was also still heavily medicated). We have appointments scheduled next Friday for Evan for an EEG and consultation. We will learn much more then.

Updates

First, my dad is doing well. He's out of intensive care and in his own room. I was even able to talk to him briefly today.

Next, Evan is doing well. Today Dr. B, the neurologist called us to discuss changing Evan's medication schedule. Instead of waiting until Monday to decrease one of the meds, we will begin, slowly, tomorrow. The reason is because it is making Evan irritable. He is incredibly needy and, well, cranky. This goes on all day long. Then, during the night he has been up for hours wide awake and not happy. He is eating and drinking better though.

With all the trauma Evan just went through in the hospital, we are still trying to keep him happy. It's hard to do much with a boy in my arms! He isn't napping much either.

Today we saw our pediatrician for Meghan and Evan's 3 year and 1 year exams. All went well, as we expected.

Some Thoughts

So I guess three years ago (to the day on November 3rd) our lives were turned topsy-turvy when we took Meghan to the ER because she was vomiting at 17 days of age. Her heart rate was in the 320's. She went into a form of cardiac arrest. She was admitted to the Cardiac ICU. She remained in the hospital for two full weeks with the diagnosis of SVT-fast heart rate. You can read more here, if you want to.

It was hard. It was scary to know that we were responsible for checking her heart rate with a stethoscope throughout the day and during the night. When we traveled to visit family, our trusty little stethoscope went with us. Not only that but she needed medicine for her heart every six hours (and later 8). So we set the little alarm on my new digital watch and gave her the medicine as needed. We hated drawing up medicine. Giving it to Meghan wasn't so bad...unless she spit it up, or worse, threw up from gagging on it. Giving medicine to Meghan was easy. She was trained from a very early age.

She (and I) gets her first ambulance ride at the age of five months when she has a febrile seizure (not admitted to the hospital). She and I have our second ambulance rides in another two months when we are in a car accident (when Derek is in San Fransisco).

Fast forward two years. Evan is born, and the day we are discharged from the hospital after his birth, we head to the ER and are admitted because he is dehydrated despite his excellent nursing attempts. After they finally get the IV in, he is fine though we stay in the hospital for a couple days. Evan has been our healthy little boy until now.

Fast forward one more year from his birth. Our healthy little boy as a seizure that lasts several hours long. He rides in the ambulance for the first time. He seems to make a full recovery, though the reason behind the seizure is unknown. We know a seizure could return any day, but pray that it doesn't. Suddenly, our counters are cluttered with medicine and syringes. Again. And this little boy has a very strong opinion about how awful it tastes.

But it's different now. We've been through a difficult time before. Honestly, though this is not what we want for our family, in some ways this situation is easier than what we went through a couple years ago with Meghan. (Though can I tell you that Evan's hospital stay, in some ways, was worse than Meghan's? The only time she cried was when they were trying to replace mulitple IV's. Evan cried A LOT. And could not be comforted for hours at a time.) Vigilance is in watching and listening (and making sure the monitors are always on), not in trying to count heartbeats. We don't have to disturb Evan's sleep to give him medicine. We don't have to wonder if we missed something, since we will know if he has another seizure. So this is a bit easier on us as parents.

Don't get me wrong. In many ways this is horribly difficult. I don't mean to be flippant. But really, we are extremely blessed. Sure, most parents can't say that all of their children have spent days in the ICU. Probably many can't even say their child has been seriously ill. Meghan and Evan might have some health problems, but they're manageable. (I am thankful for yet another great specialist. We've heard great things from multiple people about Evan's new doctor!) Just spend an hour at a children's hospital. We quickly realize how tiny our children's health problems are. I never want Meghan's speech disorder or anyone's health to be a thorn in my side. It's just life.

But the fact is that God has given us these children for a time. God has a reason for all things, and through all of this we have learned that we can never take our children for granted. Seeing a team of a dozen hospital staff work on your child is a solid reminder that life is fragile.

If you are a parent, I hope you haven't experienced what we have, but I also know that you may have experienced the loss of a child or daily difficulties with your child's health. May each of us appreciate life, no matter the "quality." Life, at all ages and stages, is still life. It is still to be treasured.

(You know how expectant parents say they just want a healthy baby? Yes, that is ideal, but really, all babies are a blessing. But that annoys me because life is to be cherished, even a difficult life. We will all have struggles, it's just harder to see our children going through them.)

So thank God today for the people in your life. Tell them what they mean to you. And go give your children a hug.

Home Sweet Home

So we're home, but I thought I'd show you a few more pictures and share a bit more.

This was Evan's cage-crib. How about that? Even our 2 month old roommate had this giant monster. (When Meghan was hospitalized at 2 weeks of age, she had a mini-crib at the same hospital.)

It doesn't look like he minds though, huh?

So we are home. Evan is on two anti-seizure medications. One will be decreased until he is off it completely, the other will be increased to compensate.

Hopefully he'll keep drinking for us, too. The doctor has said that it doesn't matter what he drinks as long as it is something. And hopefully we'll find our new routine comfortable and easy enough though it's not what we would prefer.

Oh, Evan is loving being at home. This afternoon he wreaked havoc in the toy room. He loved it.

I'm sure there is lots we're leaving out, but the bottom line is we are home. Hopefully we won't need to return any time soon. We will follow up with Dr. B (a neurologist) sometime in the next week or two, but we're not sure when (not for a lack of trying). We'll have a follow up EEG and MRI at some point.

So that's about it. And I'm glad. Hopefully life will be calm now.

WE ARE HOME!

Just a very quick note to let you know we made it home. Evan is not taking bottles well (especially formula/milk), but he is mostly willing to take juice. We have the two medicines that he has to take. Some side effects are irritability, clumsiness, and drowsiness. We've definitely noticed that Evan is particularly happy. He was walking pretty well before this (10-20 steps), but today he only took two steps. We'll see how it all goes.

Please keep us in your prayers about the seizures as well as hydration. Thanks! Some pictures to be posted later.

Happy Birthday

Our visitors were (L-R) Grandma E, Grandpa E (holding Evan), Aunt Amy (kneeling), and Grandma W. They made our day a lot more special.


















The balloons made the birthday boy very happy.



















Grandma W made the cakes. The hospital staff were given the leftovers and appreciated it...and thought they were adorable! We agree.


















Since we didn't have access to a bathtub, we did not let Evan dive right in, but we did let him touch it.

Want to know the funny thing? At home Evan never goes around the house in just a diaper. Never, yet that's how he has spent his hospital stay. The gowns just got tangled around him.

We almost got to come home tonight. It was out of the question when we realized our pharmacy was closed. So Derek spent the night with an unhappy and tired boy. But getting healthier and healthier!

Freedom

Happy birthday, Evan. Hopefully I will post some pictures from the past year soon.

In the meantime, Evan is a happy boy. His IV is out! He can bend his arm again. (It came out during the night. For 6-9 hours I thought his diaper was leaking, but for at least six of the hours I'm pretty sure it was the IV based on a wet spot on my bed after a diaper change that was by his arm. Around 6 AM I noticed the IV area was wet. Of course I can't be certain, since I don't know if the nurse checked it.)

He still has diarrhea, but is eating well. Until 6 AM he was taking a bottle well, too. There may be sores in his mouth from the hand, foot, and mouth that makes sucking hard.

The doctors are continuing to decrease some of his anti-seizure medication while increasing the one he will go home using. Of course our hope is that he continues to be seizure free.

I think Evan and I are both feeling rested. His "dopey eyes" (and my tired eyes) seem to be gone. He seems pretty much like the little boy we're used to.

We're looking forward to a nice day and hopefully continued improvements in Evan's health.

Even though Meghan won't be at the hospital today, I get to go home tonight! Derek brought stuff to spend the night so that I can go home and get some rest. :) It will be hard to leave him, but I'm hoping to be able to sleep tonight.

Derek told me a funny story about Meghan. This morning she flipped the laundry basket over so that she could get the salt down from her dresser. (We use it with the humidifier.) She made a big mess of salt throughout her room and on her bed. At least I avoided cleaning that!

Thanks for your continued prayers. Ideally we won't have any more seizures or problems and we can go home in the next couple of days.

Play Time

Health wise, Evan had a good day (despite the hand, foot, and mouth dx).























I took a couple pictures to show you some of Evan's good moments. He had a lot of play time today. Aren't my guys cute?























This last picture shows why Evan's oxygen sensor keeps getting changed. See the red light coming from his mouth? Previously that was on his toe.

Despite the cute pictures, Evan spent many hours crying today. Seriously. Hours. He's been fighting sleep a lot too.

It makes a mom and dad tired, you know? But at least we had some good times too, and Evan's strength is great.

I'm hoping to get to bed soon. As exhausted as Evan is, I am too. Getting a couple hours of sleep at night (off and on) and a little nap during the day just doesn't make up for the emotional and physical stress of these days.

Scratch that. He just woke up crying.