Keeping Children Hydrated

Our kids have been rather ill for the past two weeks.

Our daughter, especially, didn't have an appetite.  That's no surprise for a sick child.  Much more important is keeping them hydrated when they are ill.

An easy way to do this is by having a tea party!  My children had four or five pitchers of water during their tea party, and most of it was drank by my sick daughter.  (E wasn't sick at that point.)

We love our little pitcher set from Tupperware.  It's perfect size for young children to pour themselves and was great for E when he was first learning to drink from a cup.

Epilepsy Awareness

  

Bookscoops encouraged others to read books about epilepsy or to share their own story today.  I first learned about this post from Good Clean Reads.  So here I am.

My son may not officially have epilepsy, but he is treated, medically, as if he does.

A person is considered to have epilepsy when they have two or more unprovoked seizures. (Read more at the Epilepsy Foundation.)  E has had one, but extremely severe.

My daughter had two febrile seizures.  Scary?  Terrifying!  However, febrile seizures do not act like unprovoked seizures-seizures that have no known cause.  My son had a three hour seizure.  At first I thought it was just a febrile seizure.  But it wouldn't stop.  Not even an hour later after we had arrived at the "local" children's hospital.

The seizure went on and on, though it changed in how it looked.  Initially it looked like he was convulsing, which just means that his muscles would tighten and relax.  After a while he stopped, and had the empty stare and his legs would "bicycle."

Eventually he came out of it.  He spent his first birthday in the hospital, barely able to hold his head up.  (You can read more about this by scrolling through the health label.) 1 1/2 years later he has not had another seizure!  He takes Keppra (an anti-seizure med) twice a day.  We don't know if the medicine works or if he is no longer prone to a seizure.  In a few more months (as long as he remains seizure-free) he will begin to slowly wean from his medication.

Amazingly, God gave us two children who were both in life threatening situations because of their own bodies.  You can read more here if you wish.   Also amazingly, both children's health problems were able to be controlled with medication.  Each of us, no matter what, is fearfully and wonderfully made.  Thank you, God!

Seizures come in many different forms (including staring off into "space").  If someone around you ever experiences a seizure, make sure that he is on his side, and then call 911.  Do not put anything in his mouth or try to restrain him.

In my son's case-and most who have a history of seizures-we have a medication called Diastat (a suppository-even for adults) to give to him if the seizure lasts for more than 3 minutes.  With seizures, they are rarely life threatening, but they can cause brain damage and sometimes the person can stop breathing when they last for a long time.  It's actually only by God's grace that our son did not experience brain damage.

Good Morning, Beautiful

A while back I got the book Good Morning, Beautiful: Winning the Battle Over Seizures.  It was an incredibly emotional book, but more importantly, it shared the story of how one child, Christina overcame not only epilepsy, but also autism.  Christina's advocate and mother, Paulette George, tells an incredible story that had me bawling at times.

I don't think the reader needs to have any experience with seizures or life-threatening problems to appreciate this book.  However, this book is an excellent testimony for the Ketogenic Diet, a special form of treatment for epilepsy.  (Our son has been successful just using anti-seizure meds.)  Good Morning, Beautiful gives hope when it seems like there is no hope.  As I read it, I was so thankful for my son's health and how normal he is (with a three hour seizure, we're thankful there is no evidence of brain damage).

Many families find triumph over a variety of issues.  Christina's family fought a long hard battle with epilepsy.  Paulette George wrote a powerful book that shows God's providence through all of it.

I highly recommend this book, but know that it is an emotional read-at times I wanted to stop, but just couldn't!  I was, at times, distracted by typographical errors, but the book still shines forth!

This book was not provided by the publisher.

Medication Triumph!

Our son, E, has been taking medication twice a day since his seizure in October. You might say that we have had a fight twice a day because of this. This picture (from November) may make it seem like E likes medication, but trust me, he doesn't!

Until now! Last week E had to take an antibiotic. Of course it was flavored since it was for a little guy. He loved it! I contacted our neurologist and pharmacy to see if his anit-seizure medication could be flavored. It certainly can! E now takes it happily.

So if you need a young one to take medication, I recommend looking into flavoring.

The other tip I have for those of you who need draw up medication on a regular basis is to get a cork for your bottle if you need a small amount or give it in an oral syringe.   You can just purchase it at your local pharmacy, but it makes a huge difference in the stress level of drawing up medication, especially if you need less than 1 ml.  (We learned this when M took .3 ml of heart medication several times each day.  That was stressful!)  The cork has a hole in it.  You place the syringe in it, turn it upside down and then draw out the medicine.  If you do it twice it eliminates bubbles, which make it difficult to draw up the exact amount.

Does your young one take medication?  Let me know if you have a tip for me!

Tomorrow is the last day for the felt pattern giveaway!  Check it out!

Coping with Child Illness

We recently went through a bout of the kids being sick.  Stomach illness.  We've gone on to just having colds...not so bad!  Warning: This post may contain too much information followed by what helped us.

E, age 1, vomited twice. Thankfully both times we were on the couch cuddling and I had a blanket on my lap which collected much of the mess. Though there was lots of laundry, and some of it needed to be washed twice, it wasn't too awful.

M, was a little different. God saw it possible to have M wake up with a bellyache. Now she often tells us she is sick (and that her toe or cheek hurts), but since she dry-heaved, I promptly took her to the toilet where she produced nothing.

I decided that she needed to stay home from school, but we still did all of our usual morning routines. She got dressed and then had breakfast. While she was eating her Cheerios, I went upstairs to get E up for the day.

I was about to change E's dirty diaper, when M came upstairs and told me she needed to go potty. I asked if she could do it by herself, and she assured me that she could. However, I immediately heard some bad stuff happening. She had thrown up, too. I was amazed that she mostly hit the toilet! I was so thankful that she had awakened not feeling well and she knew what to do and where to do it.

E was still desperate for a diaper change. M was desperate for a bath. I put her in the tub and got E changed.

And it was only 7:30 in the morning.

What I learned:

1. Put little girl's hair in a bun. A ponytail isn't going to cut it...it could still get, um, messy.

2. Just because a 3 year old has vomited and has a bit of a fever doesn't mean they will be content with clear fluids. My mother-in-law reminded me of the BRAT diet.

B-Bananas

R- Rice

A-Applesauce

T-Toast

M was satisfied with a banana and applesauce, though she had a bit of a freak out that she didn't get to have milk.

3. Pedialyte has freezer pops! I had no idea until December when we got them. M really enjoyed them, complete with mittens. (Mittens only make sense to me. Derek laughs at me.)

4. Little girls do not like the idea of a sick bucket. However, both little boys and little girls like to turn buckets into helmets and become a robot. I was glad she didn't need the bucket for anything but a toy.

I just wanted to share what worked for us in case it can help you. We're fully recovered now, but it's still pretty fresh in my memory. :)

Health...and Life

I shared this on our family blog, and wanted to share it here too. So I guess three years ago (to the day on November 3rd) our lives were turned topsy-turvy when we took M 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. E 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. E 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 M. (Though can I tell you that E's hospital stay, in some ways, was worse than M's? The only time she cried was when they were trying to replace mulitple IV's. E 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 E'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. M and E 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 by spending an hour in a children's hospital tells me that my children's problems are tiny compared to others'. I never want M's speech disorder or their health problems 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 or a short 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.

WE ARE HOME!

Just a very quick note to let you know we made it home. E 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 E 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!

Minor Complications

M, our 3 year old and E both have hand, foot, mouth disease (not related to the seizure). The doctor M saw has said she's no longer contagious, but she is not allowed at the hospital because of all the sensitive patients. Understandable of course. It makes me sad because tomorrow we will celebrate E's birthday. This shouldn't complicate our time at the hospital other than some basic changes like the staff wearing gowns and gloves and M not allowed to be here. E has diarrhea due to the antibiotic. Today he sat up like a big boy, so his strength is back. However he spent much of the day crying. It is exhausting for us, as his parents to see and hear this. He also fights sleep something awful. It's almost 8 o'clock and I'm going to try to go to bed in a while.

Basic Needs

Yesterday afternoon E started on clear fluids and then got to have formula and applesauce. Around 10PM we were taken from the PICU and sent to the "floor." Thankfully we're in a room now. E was stable enough long before that, but there just was no room for him. E is getting stronger and stronger. His eyes are open now, though I call them "dopey eyes." Due to all the medication, he looks--drugged. He is holding his neck up, too. We had several crying spells yesterday. By this I mean that he cried for 30-60 minutes and refused to be comforted. It's so hard. So tiring. Though I may be exhausted, apparently my body is thrilled with the two hour stretch of sleep I got tonight. It's after 2 AM. And I just can't get back to sleep. Thankfully E is sleeping! We've been told that we'll be in here at least until Monday, so tomorrow we'll celebrate his birthday here. We may not know the cause of the seizures when we leave, but he will continue to be on anti-seizure medication (though a normal, low dose). M came to visit while we were still in the PICU. She wasn't too interested or concerned with E, but she liked that the television could be moved up and down. (It's on a crane-like neck.) So E is eating. He is sleeping. We have a room. And a roommate. The baby roommate is having some tests done so I have to walk quite a ways (not on this wing) to use a bathroom. At least there is a sink in the room I can use.

Hungry and Tired

It was a rough night. I think we had about a two hour stretch at one point. E is really upset when he's awake. And he's hungry. The poor guy can't eat yet. One issue is that his breathing is questionable. (At one point last night I wondered if he would need the tube again; thankfully it was time for a breathing treatment that helped). He also doesn't have enough strength to sit up/hold his head up yet. Regardless, he is not happy. Every moment he's awake is a fight. He's sleeping again. He wrestles with us and his tubes until he gets tired enough to sleep. We're not sure if we'll be leaving PICU today. I hope so. On a different note, below is a fun post. It was scheduled out, so there's some creativity for you today!

Breathing Tube is Out

Just a quick note to share that the breathing tube is out! That also means he is sometimes "awake" though his eyes are closed. He hates all the tubes and that he can't move his arm (due to a no-no cast where the IV is). The neurologist told me that we can expect to be in here until Monday. (Happy birthday to E...) We have some family visiting from out of town this weekend, and will be happy to have the additional support and entertainment for M.

PICU

Not the normal post, but I consider my readers my friends... We are at AI DuPont Children's Hospital with our son. (For those of you who don't know he turns 1 on Sunday.) This morning when I went in to get E he was having a seizure. We're in the Pediatric ICU. Seizures aren't new to us since M has had two (3/2007, 3/2008), but M's were harmless, short febrile seizures. E's seizure continued and continued, though it changed while we were in the ambulance and seemed to stop. But it didn't. By the time we made it to the hospital (which is about 50+ minutes from our home) it was still happening off and on. Seizure meds only helped so much. But now he is doing okay. He has had an EEG on his brain which showed no seizure activity. The spinal tap came back clean. We don't know what is truly happening. It will be another 48 hours before one of the test results comes back, so E will not be discharged before then. Derek was at work, of course, when this happened. I called him after calling 911, but based on our experience with M, we weren't too concerned. Eventually I called our parents and pastor. At some point Derek and I realized he was very needed here, so he went home and collected toiletries, clothes, and reading material for me. He was even thoughtful enough to get slippers and the laptop. (And boy are we happy that the hospital has wireless. Three years ago it didn't, but we didn't have a laptop then, either. Pastor Bill arrived before Derek, and by that time I was mostly done crying. :) I will post updates if we learn anything more. The anti-seizure meds got him out of it, but it took a fair amount. He's sedated due to all the medicine, but they will let him wake up at this point. He is restrained though, so that he does not try to pull out his breathing tube. (That will be removed when he's awake and alert and ready to have it gone.) Other than that, we wait for test results, though nothing is coming up positive yet. In the meantime, we ask for your prayers. Thank you.