I'm not even sure where to start this post . . . it all still seems so bizarre to me. Henry had a seizure on Monday while we were at Lucy's outpatient therapy. He looked a bit pale so I took him to the vending machine. Henry's always been my snacker, and he gets super cranky, and sometimes even feels sick, when he doesn't constantly have something to munch on. He picked out a drink and a snack, and we turned to walk back in.
Henry stopped and looked confused. He wouldn't look, or couldn't look, straight at me. He said, "Mommy, I can't see anything". And I looked at him closely as he said it again, then he just collapsed. I knew it was a seizure. It sounds dramatic because I guess it was, but Mike literally walked into the doors at that very moment. He hadn't planned to come to therapy that day, but decided to stop by on his lunch break. I had no idea he was coming, but the Lord had him there right as Henry fell to the ground.
We tried pinching him and calling his name, and all of the other things we seizure-parents do to distract our children during seizures; to check and see if the seizure is still going on. He looked like he was asleep and didn't have any jerking or twitching, just as with the other episodes we had seen. I opened his eyes and saw that they were rolled into the back of his little head. Mike carried him into the therapy room and we slowly started to get him to wake. He ate and drank a bit, and very slowly started to feel better.
Henry wasn't himself until last evening. He was postictal, which means his brain was just worn out from the seizure activity. This happens often after seizures, so we weren't surprised at all by it. I put a call into the neurologist who upped Henry's seizure meds. Seizures aren't considered "emergencies" unless they go on for a certain amount of time. They also aren't considered emergent unless the patient stops breathing or if their breathing changes. None of this happened with Henry, so we didn't take him to the ER and there was no need to call 911 (just to clarify for those who aren't familiar with seizures).
This is a great description of what Henry experienced: What happens with a seizure?
I am discouraged, as I truly thought that Henry's past seizure episodes were caused by a certain medication he had been on. We had slowly weaned him off that med a while ago, so it is no longer in his little system. So this means that Henry had a drop seizure and we just don't know why.
On a very happy note, Henry continues to be the sweet boy that we've known him to be - giving and tender-hearted, loving and sharing with everyone he sees. We are absolutely grateful for this and it is something I don't take for granted! I'm praying that this peaceful time will continue in his heart and in his mind. I can literally see him making the right choices in his mind, right before my eyes. It is a joy to watch him unfold and change before my eyes. Lord, give him more!
Please pray for Henry. Pray for his brain. Pray that this is something that he will grow out of. Pray that this will stop immediately! Pray that God would give him understanding as he becomes more aware of his body and how it doesn't work the way that he wants it to. Pray for Conner too, that he doesn't feel lost in all of this. Lucy is doing so well, Henry was doing so well, then out of nowhere this seizure happens. Conner told me yesterday, "It's just one more thing, Mom".
Heavy-Hearted,
Ryan
Showing posts with label seizure. Show all posts
Showing posts with label seizure. Show all posts
Tuesday, June 2, 2015
Tuesday, February 24, 2015
From the Brain and Tissue Bank
*WARNING: This post is a little graphic and may not be for the faint-of-heart.
NKH is very rare. There are less than 500 people world-wide, living with it even now. This week, our NKH Family lost two precious boys. And while they are complete and whole now, the pain and suffering they endured on earth does not go unnoticed and the tragedy of their deaths has crippled their parents and everyone who loved them here on earth. Sadly, this isn't new to us as NKH is considered "terminal". I honestly cannot tell you how many children have died since we started our journey over nine years ago. It's painful to think about.
With so few people around the world having NKH, and with it being considered "terminal", there isn't much research being done. In fact, many doctors do not even know about it, and if they do, their information is sometimes terribly outdated. One leading doctor here in the US, Dr. Johan Van Hove, has dedicated his life to researching NKH. He is the one we have seen in Denver and whom we have met with at all of the NKH Conferences in which we've attended. We've seen so many families affected; so many children pass away . . . it causes a fire to burn and an urge to fight, if not for a cure, at the very least for better treatment for our children. As NKH parents, we want them to be able to live better lives, lives that are not filled with chronic pain, seizures, GI issues, cerebral palsy, etc. We want them to live lives that are filled with eating for pleasure, walking, playing with other children, and maybe even talking! These things are a possibility because of research, but more of it needs to be done.
When Ellie Kate first went on hospice before she was one year of age, we decided to donate her brain to NKH research. The leading NKH doctor had talked to us and we knew that NKH brains were needed. They would help research in so many ways. So when Ellie Kate went home on hospice in December 2012, we called Dr. Van Hove at Denver Children's Hospital and told him that we once again had decided to donate Ellie's brain and any other tissues that could be helpful in finding better treatment for this awful genetic disease. This isn't a decision that everyone can make, and I fully understand that. And I would never judge someone for choosing not to donate their loved ones organs, even if it is for NKH research. It is an extremely private, intimate decision that only the closest family members can be allowed to make. And we must respect the decisions that are made and support those who make them.
Today we received a letter from the University of Maryland's Brain and Tissue Bank, the place where Ellie Kate's brain was sent. I knew what it was before I opened it. It was the pathology report; the final report on Our Daughter; over two years later. I let the letter sit there for a while and I debated reading it on my own. But, Lucy was asleep and the boys were entertained in our bedroom, so I had the living room quiet and all to myself. I was at peace with opening it, and so I did.
There isn't much that I gleaned from that report; not much that I could understand. After all, it was a forensic pathology report and I am not a doctor. I'm sure the report will be explained to us by our trusted doctors here at some point, and the report of course went to Dr. Van Hove for research. But, on the last page of that letter, there was a picture. A microscopic picture of portions of EK's little brain. Two pictures, actually. And when I saw them, I broke down. I wasn't expecting pictures. I didn't know what to think about that.
All of a sudden, during my sobbing, my fingers touched those photos. I did that with Ellie Kate's pictures a lot that first year after she died. Touching a photo is like touching her, in a way. And it was no different with these photos. And that surprised me. Before I knew it, I was thanking God. I was thanking God that I had a NEW picture of Ellie Kate. I know that sounds so strange, Friends and if you haven't lost a loved one, then I don't think you will understand that this reaction is "okay", but it is. It's okay. I am SO grateful, that even after My Daughter died, I was able to see a picture of a part of her - a part of her that grew inside of me. How precious is that? Twistedly precious? Maybe so, but precious to me nonetheless. I. Am. Grateful. God knew, back when I signed the papers to donate, that a little over two years in the future, I would need to see a picture of Ellie Kate. He's Sovereign and what happened today was NOT an accident, of that I am sure. I want to be clear: I do not see this as a cruel act; that this letter had to come to us and that we had to see those pictures. I'm thankful that I have a God, who is so tender-hearted, that He sent this to me on this day, for His purpose. It is for my good. For Mike's good. It's a gift - that's how I choose to see it.
I don't know how to end this post. I truly hope it wasn't too upsetting for you to read. I don't want that at all. What I want from this blog is for all of you to see the good, bad and ugly of the life of a special-needs family; the life of a family dealing with child-loss, while striving to love Jesus with all of their hearts (and we so often fail, just like everyone else). We do have a prayer request tonight - Lucy had a lot of seizures today and is still having diarrhea (going on three weeks now although nothing has grown in cultures - yay!). Would you pray that she isn't getting sick? And, Friends - love your babies. Take lots of pictures. Cherish the ones you love while they are here on earth with you.
http://www.nkh-network.org/whatisnkh
NKH is very rare. There are less than 500 people world-wide, living with it even now. This week, our NKH Family lost two precious boys. And while they are complete and whole now, the pain and suffering they endured on earth does not go unnoticed and the tragedy of their deaths has crippled their parents and everyone who loved them here on earth. Sadly, this isn't new to us as NKH is considered "terminal". I honestly cannot tell you how many children have died since we started our journey over nine years ago. It's painful to think about.
With so few people around the world having NKH, and with it being considered "terminal", there isn't much research being done. In fact, many doctors do not even know about it, and if they do, their information is sometimes terribly outdated. One leading doctor here in the US, Dr. Johan Van Hove, has dedicated his life to researching NKH. He is the one we have seen in Denver and whom we have met with at all of the NKH Conferences in which we've attended. We've seen so many families affected; so many children pass away . . . it causes a fire to burn and an urge to fight, if not for a cure, at the very least for better treatment for our children. As NKH parents, we want them to be able to live better lives, lives that are not filled with chronic pain, seizures, GI issues, cerebral palsy, etc. We want them to live lives that are filled with eating for pleasure, walking, playing with other children, and maybe even talking! These things are a possibility because of research, but more of it needs to be done.
When Ellie Kate first went on hospice before she was one year of age, we decided to donate her brain to NKH research. The leading NKH doctor had talked to us and we knew that NKH brains were needed. They would help research in so many ways. So when Ellie Kate went home on hospice in December 2012, we called Dr. Van Hove at Denver Children's Hospital and told him that we once again had decided to donate Ellie's brain and any other tissues that could be helpful in finding better treatment for this awful genetic disease. This isn't a decision that everyone can make, and I fully understand that. And I would never judge someone for choosing not to donate their loved ones organs, even if it is for NKH research. It is an extremely private, intimate decision that only the closest family members can be allowed to make. And we must respect the decisions that are made and support those who make them.
Today we received a letter from the University of Maryland's Brain and Tissue Bank, the place where Ellie Kate's brain was sent. I knew what it was before I opened it. It was the pathology report; the final report on Our Daughter; over two years later. I let the letter sit there for a while and I debated reading it on my own. But, Lucy was asleep and the boys were entertained in our bedroom, so I had the living room quiet and all to myself. I was at peace with opening it, and so I did.
There isn't much that I gleaned from that report; not much that I could understand. After all, it was a forensic pathology report and I am not a doctor. I'm sure the report will be explained to us by our trusted doctors here at some point, and the report of course went to Dr. Van Hove for research. But, on the last page of that letter, there was a picture. A microscopic picture of portions of EK's little brain. Two pictures, actually. And when I saw them, I broke down. I wasn't expecting pictures. I didn't know what to think about that.
All of a sudden, during my sobbing, my fingers touched those photos. I did that with Ellie Kate's pictures a lot that first year after she died. Touching a photo is like touching her, in a way. And it was no different with these photos. And that surprised me. Before I knew it, I was thanking God. I was thanking God that I had a NEW picture of Ellie Kate. I know that sounds so strange, Friends and if you haven't lost a loved one, then I don't think you will understand that this reaction is "okay", but it is. It's okay. I am SO grateful, that even after My Daughter died, I was able to see a picture of a part of her - a part of her that grew inside of me. How precious is that? Twistedly precious? Maybe so, but precious to me nonetheless. I. Am. Grateful. God knew, back when I signed the papers to donate, that a little over two years in the future, I would need to see a picture of Ellie Kate. He's Sovereign and what happened today was NOT an accident, of that I am sure. I want to be clear: I do not see this as a cruel act; that this letter had to come to us and that we had to see those pictures. I'm thankful that I have a God, who is so tender-hearted, that He sent this to me on this day, for His purpose. It is for my good. For Mike's good. It's a gift - that's how I choose to see it.
I don't know how to end this post. I truly hope it wasn't too upsetting for you to read. I don't want that at all. What I want from this blog is for all of you to see the good, bad and ugly of the life of a special-needs family; the life of a family dealing with child-loss, while striving to love Jesus with all of their hearts (and we so often fail, just like everyone else). We do have a prayer request tonight - Lucy had a lot of seizures today and is still having diarrhea (going on three weeks now although nothing has grown in cultures - yay!). Would you pray that she isn't getting sick? And, Friends - love your babies. Take lots of pictures. Cherish the ones you love while they are here on earth with you.
http://www.nkh-network.org/whatisnkh
Wednesday, September 17, 2014
Joy
JOY - it's such a wonderful word, isn't it? And I've been experiencing it, My Friends! This is a BIG DEAL, ya'll. There was a time where I didn't think I would feel joy again; where I wouldn't see true joy again in my life, in our lives as a family. But, the Lord has recently given me great joy. Oh, I am so indescribably grateful!
I've combined a few definitions of "joy" for you . . .
Last Friday I was able to speak at the OANAPT Conference at Mercy Hospital in OKC. I love public speaking, even though I am a bit rusty, and I've been praying for more opportunities to do it. It's a part of my life that I really miss. Last week God gave me that opportunity and it gave me so much joy! Not only that, but I was able to see many of our precious friends/therapist of whom we are bonded for life because of Ellie Kate. Truly, the time was precious in every way and I am still so full of joy from the experience (if you need a speaker, I'm available . . . just sayin'!).
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Last night, I let the boys watch Lucy while I took a shower and while Mike was in the kitchen. Henry ran into me saying, "Mommy, Lucy has a seizure, Lucy has a seizure!". I ran into to find my sweet boys in bed with their sister, holding her and stroking her head. She was completely fine, and even though she had a few slight seizures and the boys know how to recognize them, etc - I was STILL overjoyed at the thought that they care for Lucy. The boys LOVE their sister, even though she is sick and even though they know she will likely be in Heaven before they will be. It was a normal moment to me, something typical - brothers in bed with their baby sister, playing and talking to her. JOY to my heart!
I've combined a few definitions of "joy" for you . . .
1. a : the emotion evoked by well-being or by the prospect of possessing what one desires
b : the expression or exhibition of such emotion
2
: a state of happiness or felicity
3
: a source or cause of delight
Last Friday I was able to speak at the OANAPT Conference at Mercy Hospital in OKC. I love public speaking, even though I am a bit rusty, and I've been praying for more opportunities to do it. It's a part of my life that I really miss. Last week God gave me that opportunity and it gave me so much joy! Not only that, but I was able to see many of our precious friends/therapist of whom we are bonded for life because of Ellie Kate. Truly, the time was precious in every way and I am still so full of joy from the experience (if you need a speaker, I'm available . . . just sayin'!).
Yesterday, I was able to take Lucy to the mall in the handicap-accessible van. This was HUGE to me as a momma. The van was given to us by The Lord (through friends) for Ellie Kate, before Lucy was even born. It had some major repairs that needed to be done and we just weren't able to get it fixed for a long, long time. But, because of your gifts and the GoFundMe page, we were able to get it completely fixed, air-conditioning and all and Lucy is now able to ride in it!!
Check out her PURE JOY . . .
She couldn't get enough!
Going to the mall is a typical thing, yes? And I was able to do it with MY DAUGHTER! I felt good enough, she felt good enough, and we had the transportation to get there. We met Mindy and her daughter Lexi, along with sweet Lyla, whom Lucy adores. We shopped and I actually allowed Lucy to "play" on the playground! She loved being around all of the kids, and most of the parents were so kind and gracious.
Me, Lyla and Lucy
"Row, Row, Row Your Boat"
Lucy loved the candles at Bath and Body! Two hands!
Last night, I let the boys watch Lucy while I took a shower and while Mike was in the kitchen. Henry ran into me saying, "Mommy, Lucy has a seizure, Lucy has a seizure!". I ran into to find my sweet boys in bed with their sister, holding her and stroking her head. She was completely fine, and even though she had a few slight seizures and the boys know how to recognize them, etc - I was STILL overjoyed at the thought that they care for Lucy. The boys LOVE their sister, even though she is sick and even though they know she will likely be in Heaven before they will be. It was a normal moment to me, something typical - brothers in bed with their baby sister, playing and talking to her. JOY to my heart!
And as I think about the upcoming weeks, I am filled with joy as well. Sure there is some anxiety, stress, etc, but God has given me joy for this time. It is a gift I do not take for granted! Lucy starts school in just two weeks. Her third bday is just weeks away too! And then we will be on our Make-a-Wish trip to Disney! And before you know it, we will be celebrating Ellie Kate's birthday at OU Children's (more to come on that).
I feel loved and cared for. My heart is delighted, and I thank Jesus for this precious time in my life and in my heart. I know I won't always feel this joy, but for now . . . I am relishing in it.
For the Lord will deliver Jacob
and redeem them from the hand of those stronger than they.
12They will come and shout for joy on the heights of Zion;
they will rejoice in the bounty of the Lord—
the grain, the new wine and the olive oil,
the young of the flocks and herds.
They will be like a well-watered garden,
and they will sorrow no more.
13Then young women will dance and be glad,
young men and old as well.
I will turn their mourning into gladness;
I will give them comfort and joy instead of sorrow.
14I will satisfy the priests with abundance,
and my people will be filled with my bounty,”
Jeremiah 31:11-14
"Truly, truly, I say to you, that you will weep and lament, but the world will rejoice; you will grieve, but your grief will be turned into joy."
John 16:20
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