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Friday, April 29, 2011

Fun family pictures of Dad

These pictures are in no order whatsoever. I just wanted you to see just how amazing my dad is. And, the only way to tell you how amazing he is, is to SHOW you. You can see the love written all over his face. I love you, Dad, and I'm so glad you're going to be allright!!!


























Goodnight friends,
J

Thursday, April 28, 2011

Nightmares!

I am having weird nightmares about Sophie. She's doing so well except for a new rash, but in my nightmares she's got lesions all over. I pray to God that doesn't happen for her, and it makes me SO sad that for many, that is a reality!!! Let's wrap our heads around this and try to help with the research. 

For information on Histiocytosis go to: http://www.histio.org/site/c.kiKTL4PQLvF/b.1810505/k.F16D/Disease_Information.htm

And for information and to help with research, please go to:
http://www.txccc.org/histiolab/
Click on "donate now"

Have a good day, friends,
J

Tuesday, April 26, 2011

Today's Excitement

Me and Adam on Easter
Me, Sophie, Adam and Aiden
Aiden, Me & Sophie. Fun times at Easter!
Today is full of excitement for us once again.

My dad is going to the cardiologist, so please pray for him as he looks at the potential for more testing. He’s been having symptoms and was in the hospital for three days last week going through tests. I just want him to be better. He’s too young for this.

Also, Sophie was home from school yesterday with severe back pain. She’s going through more testing on May the 16th at the Cancer Center, but had to go endure another “it’s nothing, just take ibuprophen” visit with the pediatrician. We love Sophie’s pediatrician, but it’s hard when we know the LCH could be at work in her, and probably is just searching her little body for weak spots to attack. Depressing, but we will push through. And, I’m doing everything in my power to distract Sophie from the pain and discomfort by keeping her busy. She has swimming lessons today and also has TAKS tests today and tomorrow at school which will most likely wear her out. She was SO tired when I laid her down on her pillow last night  that she went right to sleep. She came into my bed in the middle of the night again though, so I didn’t sleep too well. Occupational hazard of motherhood, I guess…

Just as a reminder to all of you out there, there is a Histiocytosis web page at www.histio.org and I am going to hopefully start volunteering with them soon. There is also a Histio eStore out there where you can buy fun little items and the proceeds go to benefit Histiocytosis research!

Aiden will be TWO next week. It’s hard to imagine that it’s been two years since my precious little man landed on the scene. He’s been such a blessing to us and even with the immune disorder, the Epilepsy and Cerebral Palsy, I think it’s amazing how far he’s come in such a small amount of time. The kids are such a miracle.


This weekend, we had an amazing time with Adam and my folks. We went down to Bay City on Saturday and spent Sunday with them as well. Though the trip was too short, it was good to go and see everyone at St. Paul’s UMC and be a part of the service. Sophie was the most precious acolyte and Aiden helped carry the Easter lilies down to the communion rail in the front of the church. It’s a tradition for the little ones to carry the lilies down to the front. It was so cute to see a parade of little munchkins carrying their Easter lilies down. Some of them weren’t any bigger than their plant.

May the God of Easter be with you again as you walk through today… He has risen from the grave and dwells among us until the ascension. Cherish His presence this Easter season, my friends! To God be the glory, Amen.

Wednesday, April 20, 2011

Families should come with WARNING LABELS: To the men out there...

WARNING: This family may love you so much that you'll want to spit... or run really really fast in the other direction. We are stubborn with our opinions, open with our hearts and old school with our values and standards.

WARNING.... This one's to all the men out there... Please please please love your family enough to go to the doctor when you are sick. Please know that once you are a family it's for life, not an optional activity. It's for KEEPS! We're like the southern mafia without the guns and the thugs. Just a bunch of folks that love each other a lot and want you to be ok... and will give you weird stares and lectures if you don't take care of yourself... Seriously! How annoying, huh? This means that your life is not your own anymore. This means you now have to do what your family members say sometimes and let them help you take care of YOU! Warning - Sometimes this means yielding to our wishes when you don't feel well and going on ahead to the doctor in spite of wanting to appear bold and invincible. We will probably actually see you as MORE bold and MORE invincible if you DO go to the doctor. No joke! And, we will still love you if you go to the doctor. PROMISE! And, like most people, nobody likes going to the doctor... But, it's better to get help when you don't feel well and feel like yourself again sooner than have to deal with the eye rolls of family members when you don't go to the doctor like you should! There are a lot of people counting on you to be well, so buck up and go do what you need to do. I know, you don't need some girl to tell you what to do, but no one likes a whiny man. So, please Men, we love you so much... Go to the doctor when you're sick!

Dear God, Bless the sick people... Especially the men and especially the ones that won't go to the doctor when they need to go get help. Heal them, but also turn their hearts so they will see that they need to get help and feel better so they can be the best they can be! Also, please heal my daughter and my son of their problems and calm my heart, Lord. I know you have great plans for us!  Amen!

Goodnight friends,
J

Monday, April 18, 2011

A few of my favorites from this weekend...

Attached herein are some pictures of the past weekend with my kiddos... I thanked God for them both all weekend. Living fully in spite of the worry of the test results that loomed over us. They certainly were none the wiser... Super cheerful and happy, both of them!


Aiden really wanted to pet Fiona. Not sure it was a good idea, by the look on her face!


Aiden was thrilled when I moved the Magna Doodle lower on the fridge.

"As For Me and My House, We Will Serve The Lord", we see this every morning now in the kitchen area. I have re-arranged a little bit in my de-cluttering mode this weekend.

With all of his motor delay, was delighted when he climbed on the ottoman on Saturday. Go Aiden!

Sophie and her smile last night when we were playing around in the living room. She was SO tired, and had no trouble going to sleep last night. But, she did look good to see her without flushed cheeks for a change.

After the playing was over, they rested while they watched Marry Poppins. What the heck was she ON anyway? That lady was weirdly happy and struck a strange resemblance to Maria in the Sound of Music... Even though Maria had a bit more depth... Hmmm... Maybe the parts were both played by the same actress... THEY WERE!

This fun print was brought home by my parents from a trip they took to Montana and now hangs in a position of pride in my living room... It says, "I sometimes wake in the early morning & listen to the soft breathing of my children & I think to myself, This is one thing I'll never regret, and I carry that with me all day long." 
Dear God, I do love my life even with all it's challenges. Thank you so much for my amazing children, my work, my family and my amazing boyfriend. Even with their medical problems, I am the most blessed mommy in the world to have Sophie and Aiden as my children. Amen.

Goodnight friends,
J

NEWS! ...and 10 not so easy steps!

The doctor at the cancer center called regarding Sophie's scans from last week. She had a CT of the Mandibular Facial as well as a CT of the head, a PET Scan and several different blood counts. I had already emailed him twice and called their office on Friday. It had been a week since we had last heard. And, to my surprise and delight, at about 10am, the doctor called. I thanked him first for calling and he said that he wanted to let me know that they had gathered Sophie's results and that there has been no increase in the amount of disease in Sophie’s system from the last set of scans. He said that from the scans, it appears the spot on her head is still there, but it has not increased in size. GREAT NEWS!!! He still wants us to come to our follow up in May, but that we had good news for today. YAY!!!

So, here we go and another month is well underway. On May 16, we will venture back to the cancer center and this Friday (Good Friday), overnight, we will go for a sleep study for Sophie. Hopefully this will yield some answers to her level of fatigue. She's been so tired lately...

So, in speaking about coping with a loved one having a serious illness, I have also tried to think of ways to help others cope in spite of a serious diagnosis that no one understands.  Here's what I've realized... in 10 easy steps...

Here's what you can control when things seem out of control:
1) Live more.... What have you been putting off that you can do NOW? Don't wait until tomorrow to make plans to go ahead with your wants/hopes/dreams.

2) Laugh more... Take more pictures/video and laugh more with your family and friends. Have fun and enjoy life today to it's fullest... (see title of this blog)

3) Education.... The truth is, no one really understands the disease. But, it's okay to educate them in a kind and genuine way. Give them links to online resources that can help them understand, but try not to bombard people with information unless they seem genuinely interested in knowing more. You'll just annoy them if they aren't. But, don't read too much. Everything on the search engines will have the most tragic endings. Just ask the doctors and nurses with experience with the disease to make recommendations. In our case (www.txccc.org then click on Histiocytosis AND www.histio.org )

4) It's okay to blog... Letting people know what you're going through is OK. Don't worry about being too real, people actually prefer having a little window into who you are and what your family is going through if you will let them. Obviously protect your identity if it suits you, but sometimes a care page or a blog is just what the doctor ordered! Warning - don't try to seem too Pollyanna (I've done this), it doesn't do anyone any good to mask reality, but rather rejoice in the good times, and look for the blessings in the bad times. They are there, trust me!

5) Gather the ones you love around you.... Now is the time to call your loved ones and lean on them. If you're like myself, you worry about leaning too much on your family and friends, but they want to pray for you and care about you when you need it, because they know you'd do it (and probably have done it) for them.

6) Seek guidance.... When you don't know what to do, join a support group or seek spiritual guidance to help you cope. You may find that you needed the support more than you thought you did. And, look for ways you can give back. Listening to others makes things better, trust me.

7) Get your house in order... Clean, get your financial house in order, do the laundry, etc... These are things you can control that may help you persevere through the struggles ahead. And, if the laundry's done... Hey, that's one less thing to worry about!

8) Take care... Take care of yourself. Make sure you're getting enough sleep and taking good care of yourself. Now is the time to stop smoking and take on new healthier habits wherever possible. You will need your strength. I have given up chocolate for Lent and have lost 10+ pounds because I am trying to be as healthy as possible for my kiddos as well as myself.

9) Keep track and plan... Get an online calendar manager or a device that helps you keep track of appointments. The iPhone 4 has been the best investment I've made to that end in a VERY long time. It really helps with calendar management as well as contact management.

10) PRAY... I've left this last one for the end of the list, but it's by FAR the most important thing to do. Pray Pray Pray... I do believe that God will follow you through whatever challenges you will face, including serious illness. Prayer can work miracles, and it already has for us!

Have a great day friends,
J

Please do not reproduce without this copyright (c) 2011 livinglifefullytoday.blogspot.com, Jodi Morgan

Friday, April 15, 2011

Heaviness and perspective...

I am having a tough time dealing with the gravity and potential permanence of Sophie's diagnosis. We are new to this, but I am having trouble keeping focused on the "one day at a time" mentality, and frankly sometimes just want to be mad at someone for doing this to her, but there's no one to be mad at. It's just hard not knowing what the future holds for us.

The doctors office called me back today and said that they wouldn't know anything 'til Monday. The nurse did say that she hoped that we would get good news. I am trying not to read too much into anything they say. Who knows if the counts were up or not or if the CT or MRI's showed anything or not. But, I'm praying for that too! I can appreciate the need for the chief doctor on our case to take time to go and speak and raise awareness for Histiocytosis. He's a really good guy and I think he genuinely wants to help these kids. He's got to have a passion for helping, otherwise, he certainly wouldn't be in the business of helping Histio kids.

I will keep it short and sweet tonight, but I wanted to check in and just say a few quick things and then I'm tuning in to watch an old George Carlin special. That guy cracks me up! And, tonight I think I really do need a laugh. And, tonight I thank God for YOU, friends, who give us a boost with your kindness. Thanks again for reading. Enjoy your weekend!

Goodnight friends,
Jodi

Tuesday, April 12, 2011

An Apology, Family Update, Medical Message and a surprise video message!

First I want to apologize, I whine about going back and forth to the cancer center with Sophie for her scanning for more Langerhans Cell Histiocytosis, and about how expensive things are getting. I worry about Aiden's issues with Cerebral Palsy, Epilepsy and his immune issue pray for their health. But, all complaining aside, I am so blessed that my children are here... with me. That I even was able to get them here in the first place and that they have survived to see these years that they have seen. They have blessed me beyond compare and have changed me in such a profound way, I will never fully be able to share with them just how much. I feel really guilty about the complaining, though I know it's a natural part of this process from what I have heard. It doesn't make it okay. I just wish to God I could give my friends who have lost loved ones even ONE MORE DAY with their sweet angels.

Today was a day filled with scans as was yesterday. Sophie was a trooper, though it's still really hard to stick her. I really appreciated the fact that she was able to muster up the strength to go through the last few days and I know she's so tired right now. I love her so much and am respecting her more every day for the strength that she is showing me. She keeps telling me that she knows in her heart that the scans will be clear. I pray to God she is right. She's far wiser than her years, she's always been that way.

As we drove to get a bite to eat after her scans (she had fasted all day), she said, "you know mom, I know I'm going to be all right... we both are." She's so smart and intuitive. I know she can tell I was worried. We tried to giggle through the process. I kept looking at her while she was on the PET Scan machine, and she kept saying, "Mom, stop, you're gonna make me wiggle." Priceless...

As far as Aiden is concerned, his bump is a swollen lymph node. Nothing to be concerned about right now, though if it grows or becomes inflamed, we will need to biopsy. As for now, I think I just need to chill and relax, and try to worry a lot less. I think I need treatment for PTSD sometimes because this has all hit me pretty hard. I know God will get us through it, he already is. I could really feel His presence today while we were waiting for the PET Scan. I got this feeling of comfort like even if this isn't the last one of these that we have to do, it will all be okay. She's so strong. And, I think I'm stronger than I thought I was.

As far as Sophie's day, after the scan, she was pretty much back to herself. And, she really wanted to go to swim lessons. So, I helped her get ready and was so proud because she was doing 25's back and forth in the pool. I know she's tired now, but this was awesome to see! Tears came to my eyes because I knew where we had just been... In the middle of cancer patients and kids in wheelchairs, on oxygen and crutches and here my daughter was, well... swimming laps. I watched her in awe as the tears welled up inside and I started to think that this is what well looks like. Even if we have another bridge to cross. Even if she has to have chemo soon, this is what well looks like... for today. Her pink goggles looking up over the side of the pool as she wiped the water from her face and yelled, "Mom, did you see?". I hope she didn't see me crying behind my magazine. Maybe I hope she did, because then maybe then she would know I'm human. Ha... As if there's any doubt in her mind.
We should get the results in the next few days and were told to call Monday if we haven't heard. I am desperately praying that the scans are clear. I know God is going to see us through this no matter what happens!!! God is so amazing and tonight I am putting my faith again, like I do every day, in His hands. Life is so precious, I don't want to let worry cloud me taking every moment for what it is: An absolute GIFT!

video
http://www.facebook.com/pages/Histio-Heroes-Research-Fund/274518508260
http://www.txccc.org/content.cfm?content_id=928

Click on Donate Now to help!!!

Goodnight friends,
J

Sunday, April 10, 2011

Exciting news!!!

Ok, y'all... Sophie and I are so excited!! We just had the photographer come take pics for the story on Histiocytosis for the local magazine. I will post pics/print copy/web link as they are available. This magazine reaches a readership of over 200k people and gets 1M hits a month to their website! AND the best part is that it sits on the coffee tables of EVERY home and Dr's office in Katy pretty much... The magazine will publish in the first of June and will run for three months! The photo shoot was rather timely considering scans are tomorrow and Tues. I kept tearing up as she was taking the shots of Sophie. I pray that her scans are clear! Thanks for your prayers & We'll keep y'all posted!!!

Goodnight friends,
J

Saturday, April 9, 2011

Medical Message & Family Update - All rolled into one!

As we were winding down tonight, Sophie was much more cuddly than normal after a busy day. She leaned over and said, "Mom, do you think He knows? I mean, I think God knew that I was gonna get stuck a bunch of times and that's why he made these two veins on my arm pop out. Cuz he knows I'm hard to stick"... She does have two little veins on her arm that are more visible than others. But before I could interrupt her with reassurance, she continued, "And you know what else? I think He gave me such thick hair because He knew I'd have a big spot missing for awhile." As I sucked back tears I replied, "I don't know about that, but what I do know is that he loves us, and we're all in this together!"
Sophie wanted to show off her new sunglasses
Tonight as "scan time" looms over us, the overriding question in my mind is WHY? Why does Histiocytosis affect primarily children? Why haven't the doctors and scientists found a cure? Why Sophie? Why now? Why does this have to happen? I know God's grace is amazing and will see us through, but these questions are hard to ignore. I don't want to doubt God. My faith is stronger now than it's ever been, but it's hard not to wonder when it's YOUR KIDS.... It's hard not to be mad at someone or something as I grieve the loss of my daughter's childhood. I did the best to help her capture some of that childhood today at the school carnival. She didn't last too long 'till her little cheeks got beet red and we had to venture inside. I understand it was much hotter outside than usual today, with temps in the 90's, but the other kids were running around like crazy. Sophie said that she wanted to, but she just couldn't keep up and kept asking to go inside.

We got a drink, cooled off, and left to get Aiden's haircut. It was time... I loved the red curls, but it's so hot here in our area, that it was time for the locks to get trimmed down, at least for a few months.

After we had lunch, we rested. Sophie watched a movie and Aiden slept for over two and a half hours again. It gave me the opportunity to take a little siesta too, which was nice. Sophie woke me up saying, "Mom, you're snoring, and I can't hear my movie." I can take a hint... so I went into my room and laid down for a little while while Aiden slept. I felt so much better after that rest. I hope that I will get some of the things done that I didn't do today tomorrow. The photographer for that local news publication is coming over tomorrow to take pictures and help us put something together to help raise awareness for Histiocytosis. Hopefully that will go well.

Last night, I was talking to my boyfriend about how I dread going to the cancer center because there are some very sick kids there. It scares Sophie and I both so much that she may have to go through that and I want to go over and just hug on each one of them and comfort them some how. Right now, Sophie is on the low end of the sick spectrum as far as we know so far, thank God. And, I said I just want to go to a place where the kids aren't that sick so Sophie doesn't get so scared, even know I know that this is where she needs to be and I am SOOOO THANKFUL that we live as close as we do to the doctors that treat her. I told him I want her to be around kids that are on the same level of sick as she is. He said I want her to be as well as the well kids. I thought that was so sweet to say... because I do too! I have just lived my life for almost two years now dictating everything I do by how well or sick my kids are and it's hard to have the foresight to see both of my kids as well. Maybe because we've still got some bridges to cross...

I know it's hard to read about the medical side and the emotional side of what we're going through, and I don't want to depress anyone. I just need this time with you to express myself and hopefully give you hope. Hope is what keeps me going. EVERY day! The hope that one day, this will be much easier. I just know it will...

Thanks for reading, and for all of the kind words and notes of encouragement you've given us along the way.

Goodnight friends,
J

Tuesday, April 5, 2011

Medical Message: Histiocytosis & Spotlight on the kids

Histiocytosis sucks. First let me set your mind at ease. Sophie doesn't have any new symptoms.. But, as I scheduled the next set of scans, I am starting to see what the people in the Histio family are talking about when they talk about how horrible this disease can be even if it isn't multi systemic. Sophie so far, only has it in her skull and we are praying to God it hasn't spread. Monday she will undergo more testing to see whether it has. It's terrible in the sense that every time she has to have a scan it's done with IV contrast. This poor child is TERRIFIED of needles. Terrified!!! So, Monday, it's two tests, both with contrast AND blood work at the doctors visit and whatever else they decide they need. Don't get me wrong, I want to know if it's spreading, but this is awful... And, if the tests are positive, imagine how devastating chemo can be on children. A central line, 18 pills a day, vomiting, fatigue, weight gain, the list goes on and on... It tears your heart out even when it's not your kid. Why them? There just isn't an explanation that's good enough... None. So for now, we are preparing ourselves by resting now, eating right (lots of fruits and veggies) and laughing a TON while we can.

Sophie is also worried about a little lump behind Aiden's ear (as am I). I am taking him to the surgeon on the 12th to have it looked at. It is extremely rare that two children in one family are diagnosed with LCH, but it has happened, and my prayer is that is not the case. He's been through WAY too much already at his young age.

I am overwhelmed with fear and trepidation but I also reminded Sophie tonight when I tucked her in WHOSE we are. I told her that Jesus loves her and that she's never alone and neither are Aiden and I. Tonight when I was tucking her in, she asked if I was okay, and I told her "Yes, but it's important for you to know that Mommy and Aiden have plenty of people loving us and praying for us, too, just like you do." I wanted her to know that I'm not alone, because I know she worries about me and whether I am hurting inside.

I am, but I know that it's all going to be okay no matter what happens. God will use my strength to help other people. He will give me the armor to stand up and face whatever it is that lies ahead for us. I have seen the Lord rally around us when he was all we had left. I have seen him heal, with supernatural healing, a little boy that almost didn't make it. I just know that even if one of my children doesn't see tomorrow, the promise is that no matter what, He is right here. Helping us find peace in knowing that even the ones that go before us don't really die, but live forever with Him. I know it's a morbid thought, but it helps when my heart goes to the dark places to know that He's got us covered.

I wish Histiocytosis was not a word we have to know. I am glad I know what it is, though, and that you do too. Please pass this blog link along to anyone you can think of that doesn't know about the disease. Awareness is HUGELY important. It's key to helping us find a cure for this dreaded disease.

Goodnight friends,
J

Letter to LCH

A friend on FB recommended that we write to Histio... Here's what I came up with...

Dear LCH,

You came into our lives and caught us all by complete surprise since October of last year, you have eaten away at my precious daughter’s skull. You created a hole in my perfect angel’s skull and it’s just not fair. She was the last person in our family we ever expected to get sick. EVER… She’s been so very healthy except the LCH. I am praying that she is lesion free when we have the scans on Monday the 11th and that you leave her alone. In Jesus name I rebuke this disease, and pray the Lord’s healing power over Sophie and all of the other histio warriors that have and are fighting this dreaded disease. You may re-appear in another spot, and we realize that the threat of new lesions is very real and we are prepared. We will fight back! May the Lord bless the amazing doctors and nurses and scientists who are on the front lines of this disease, may they be given the strength to discover every nuance of you from petry dish to patient, one baby step at a time! Give them the strength THEY need as well as give us the strength WE need to fight back every day, from needles to scans, from sleepless nights filled with tears and worry… Together we are MORE POWERFUL than this disease and we will NOT relent and we will NOT fail. We will beat you HISTIO!

Take Care Friends,
J

Sunday, April 3, 2011

Once in a lifetime!

A note to readers of this blog...
In an effort to structure the blog a little more going forward, I wanted to let you know that I will start dividing it into three types of posts. Some days there will be all three types, like today. First is the Spotlight, which will serve as a journal of what we've been up to. Secondly there will be a section for Medical Messages, which will outline medical issues, situations and concerns that I have been privy to as we walk through the illnesses with which my children have been diagnosed. Thirdly, there will be a Spiritual Sideline at the end, which will sometimes contain a prayer, Scripture or devotion that resonated in my heart while I was writing the post. Sometimes there won't be all three segments in each post. I hope this helps you be able to look through the blogs more easily depending on where you are in the audience of people who follow this blog. Thank you for stopping by and I pray that you are well and hopeful that you can "Live Life Fully Today" right along with us. Thanks again for stopping by!

Sophie and Aiden
Weekend Spotlight....
This was one of the best weekends we've had in a very very long time. My daughter and my son were both healthy. My incredible boyfriend, Adam, brought his kids to visit us. All four of them. Yes, that means if things progress the way we all hope, there would be a total of six children between us. SIX!!! I always wanted kids, but never in my life imagined SIX. What an amazing blessing each and every one of them are! Precious gifts from God, each one!

All Six Kids!!!
The Big Kids

The Little Kids

The Girls

The Guys
It was the first time we had ever all been together face-to-face. We made some great once-in-a-lifetime type memories that I will treasure and ponder for the rest of my life. I haven't been this happy about where my life is heading in a long time, and this amazing man and his family are a big huge part of why. They got here on Saturday afternoon and we grilled and had a great dinner together, got everyone bathed and put to bed and even had time to play at the park. Aiden was very overstimulated, but all in all had a wonderful time. I knew Adam was a great dad, but seeing him with all the kids together just really solidified things for me in a lot of ways.

Everyone went to bed at a reasonable hour and we (rather ambitiously I might add) got everyone together and went over to church. Afterward, we came home, got some lunch and the littlest three got their naps and the big kids played while they waited for Sophie to get home from her dads. It was so cute to see Sophie and Adam's oldest girl play together. They were inseparable from the very moment they met. They are both into horses, puppies and enjoyed playing stuffed animals together. I am so excited that the girls (and all the kids for that matter) have been raised with similar values and they were able to get along so well. As a matter of fact, all six of the children got along well. I realize that they will eventually have challenges if things progress to the next level, but for now everything went very well.

I think we're headed in the right direction. And, after six months of dating, it was time for our children to meet. It just feels right...

Adam and I as we were going into church this morning.
Medical Messages... Epilepsy

What is Epilepsy?
Epilepsy is a neurological condition caused by sudden brief changes in the brain's electrical balance. When there are excess electrical discharges in the brain, seizures occur. Seizures can alter awareness, physical movements, consciousness or actions. Seizures generally last from a few seconds to a few minutes.
Epilepsy is often called a "seizure disorder." Both terms are used to describe recurring seizures.

Epilepsy is not a disease, mental illness or a sign of low intelligence. It is not contagious. Epilepsy is generally a chronic and/or lifelong condition.

When epilepsy develops
A person could have a seizure at any time during his or her life. In fact, it is estimated that 1 in 10 people will have a seizure during his or her life time. Approximately 1 in 2 percent of the population has epilepsy/seizure disorders. About one-third of the 186,000 cases diagnosed each year occur in childhood. However, senior citizens are increasingly diagnosed with epilepsy/seizure disorders.

Treatment
The most common treatment for epilepsy/seizure disorders is anti epileptic medications. Many people with epilepsy are able to control their seizures with medications. However, the side effects of medications can be severe, and some people with epilepsy do not respond well to medications and have little or no control of seizures. In some individuals, surgery can also be used to treat epilepsy/seizures disorders.

Aiden's Case...
In Aiden's case specifically, we first noticed seizures during a series of viral and bacterial illnesses that he had when he was just over one year-old last summer. He was sick over and over and we thought he was having febrile seizures, but the seizures became more and more chronic and frequent and were not always coincidental with fever, and there were major developmental delays (gross and fine motor). His temps got over 103 a few times (once over 104.7) and after spending a lot of time back and forth to doctors, and finally finding a great neurologist, he was diagnosed with Epilepsy and Cerebral Palsy. We also got to the bottom of why he kept getting sick by doing a series of tests with an Allergy/Immunology specialist who diagnosed the Hypogammaglobulenemia of Prematurity, that he will HOPEFULLY outgrow as his system catches up with his prematurity. He was born at 30.5 weeks (see earlier posts). Aiden is now on an anti-epileptic medicine called Keppra. He takes it twice a day. It's VERY sensitive, and the dosing and scheduling of the medicine is extremely important. I don't know that I've forgotten a dose the entire time he's been on the medicine because when Aiden has a seizure, as a mom, it scares me half to death. You feel completely powerless, and though the neurologist assured us that the seizures would likely not harm Aiden long-term unless they last longer than 5 minutes, they can be extremely scary. I have a few more gray hairs than I did this time last year. Aiden also now has an emergency medicine that is pre-dosed and is dispensed in the even that he has a seizure that lasts longer than two minutes. He has had a few lengthy seizures, the longest lasting over 15 minutes, hence the Neurologist giving him the new medicine to help prevent any long-term damage. Epilepsy is a slippery slope, especially with a quickly growing boy, we constantly have to monitor his medicine and make sure that his dosing is adapted for his growth. Thankfully for us, Aiden has received physical and occupational therapy for his motor delays and is developing very nicely now given his diagnoses.


Credit goes to eftx.org for publishing the italicized information about Epilepsy.

Spiritual Sideline...
This is from Jim's sermon today... Read John 9:25 and think of what you are blind to in your life, and earnestly ask God to intervene. Ask him to open your eyes so you can see the light and let go of the sin and secrets that are permeating that one part of your life. Be fully honest with yourself and give this area over to God. I have done this exercise and it has made an amazing difference in an area of my life that I thought would just continue to tear me apart. I am by no means perfect, but am trying every day to be just a little more like Christ. Baby steps...

May the Grace and Peace of our Lord comfort you now and always... Amen

Goodnight friends,
J