But I have my coffee in hand and I just polished off a Krispy Kreme Pumpkin Spice Cake doughnut....wow.
Unfortunately I don't really have the time to do this. Writing is not something that I ever seem to have time to schedule, but for today it will just have to push its way in and then quickly make its way back out again.
So here goes.
I could have looked back over the last few posts to see where I left off, but I would be sure to get sucked into reading more than one of them and before you know it, an hour would be gone. So if anything sounds familiar, sorry for the repeat.
People always ask how Logan is, mainly because few people actually see Logan...unless you come to our house to visit. These days, I have a hard time giving a simple answer.
Let's see if I can consolidate...
In July we travelled to UVA to see Dr. Bailey and decided on a treatment plan involving medications. We would reduce one while adding a new one and then hopefully be able to reduce another one along the way, resulting in two seizure meds and the diet remaining (along with the other stuff he takes).
Well....life doesn't always go according to plan, does it?
You have to also understand that there is not a list of unlimited meds to try. Logan has been on and essentially "failed" about 7 meds in the past. And for his type of Epilepsy (Lennox Gastaut Syndrome - click here to read more about LGS), the medications to try become fewer and the side effects more severe. Typical side effects for most seizure meds include GI issues, restlessness or trouble sleeping, drowsiness, lethargy, depression, increased seizures, mood changes, etc...many of the same side effects that are listed for most drugs. I pretty much quit reading side effects and trust our doctor to give us the run down.
One thing we love about Dr. Bailey is that he has a very clear way of presenting our options to us and then he lets us decide, along with his guidance, how we would like to proceed.
Our medication options at our July visit included Banzel (fairly mild, typical side effects), Felbamate (typical side effects along with rare instances of aplastic anemia and liver failure) and Sabril (typical side effects plus may increase risk of permanent vision loss). We also do not rule out the option of implanting a device (VNS - Vagus Nerve Stimulator) that could help, although I have heard mixed reviews from families who have gone this route. And we continue to discuss whether or not to stop the diet, but that comes with its own list of changes and decisions. Brain surgery is likely not an option for Logan, but again we don't completely take it off the table.
So...the plan we decided on was to stay on Depakote and the diet. We would start Banzel (the one with milder side effects) and wean off of Zonegran. That took a couple of months. During that time we had to make sure we were giving Logan the correct forms of the meds because of the diet...much easier said than done. We were also on baking soda while he was on Zonegran to help with the ph level of his little system since the combination of the Zonegran and the diet (and maybe the Depakote too, I can't remember) could alter the acidity levels. I think I explained all of that correctly. I used most of the right words at least.
So we increased the Banzel and came off of the Zonegran and the baking soda over the course of about 2 months and we saw some mild improvements in his energy level. But it is really hard to tell with him sometimes if we are really seeing much improvement.
As we were still increasing his Banzel, we started to reduce his Onfi - another seizure med. With the goal being to keep him on two seizure meds and the diet. Well....the reduction in Onfi didn't go so well, so we increased that back to where we were and decided to wait on trying to wean that one.
Meanwhile, his ketones (which are what we test in his urine daily to ensure his body is in ketosis) were lower than we have seen since he has been on the diet (almost 3 years now). We went in for bloodwork and urine analysis to assess where we are with the diet and see if we need to make any changes.
Blood work looked fine for the most part, but his carnitine level was a little low (which it has probably been in the past as well). It was nothing alarming, but something we decided to explore.
When a patient has been on the diet for a while, the carnitine levels can decrease. Here's the way I understand it...and if there are any physicians reading this, I'm sorry for whatever I butcher.
Essentially carnitine helps to break down fat for energy. The diet is high in fat, so at some point the body starts to need a little boost to break down all of that fat. Since Logan's energy level is low and we are having trouble reducing his seizures, it seems like a good time to try the carnitine nutritional supplement.
Now...we have to determine the form he can use (thankfully there is a sugar free liquid) but there are differing opinions as to dosing and titration schedules. At this point I am kind of making it up as I go with information from the dietician and Dr. Bailey as a guide. The side effects are the usual - GI issues, increased seizures, blah, blah, blah.
During this evaluation of everything he is taking, I learn the goal for daily carb and sugar intake for diet patients is around 500mg - Logan is at almost 1500mg per day. We change what we can (a different form of Banzel) and move on.
We are also dealing with a "red flag" from the urine labs that we did a few weeks ago. It was requested that we collect a 24 hour urine sample. For you and me that means we pee in a cup over a 24 hour period. For Logan, that means a catheter is inserted and left in for 24 hours.
Cue the grimace and gasp.
At this point, we can't find anyone that can do that so we are being referred to Nephrology.
Most of this has happened over the last couple of weeks.
We are also interviewing new nurses for the additional hours we have had for almost a year, but have not been able to fill. He's going to school 3 hours a week - at varied times and days, but they have been amazing to work with us. We are meeting a new OT today and trying to find a new speech therapist. He is walking in his gait trainer without the seat on it and often without any tears or fussing.
And...he is...beautiful. His sweet little personality is changing and it is precious to watch as that unfolds.
He's sleeping pretty well at night. We have a twin bed in his room, so he is at least sleeping in his bed on his own (though someone is in there with him every night).
We have had to give the rescue med less lately.
He "talks" very loudly and will "yell" at us when he's mad...and often won't stop until he feels like he's gotten his point across.
He is a precious being and he has so much purpose in this life. I continued to feel so honored to be his mom.
The last few months have been busy with Freddie, too. He turned 7 YEARS OLD in September. WOW!
He started first grade and has the same teacher that his dad and his Aunt Dee Dee had for first grade. He loves her and seems to really love school this year.
He's riding the bus in the afternoons, 4 days a week and loves that as well.
Reading and writing used to be a huge struggle for him, but over time we are seeing those things get better and easier and I am so thankful. It's like handling Logan's stuff becomes easy when I compare it to helping Freddie not just learn to read, but learn to love reading.
He also had the HUGE honor of holding the King's Crown at the homecoming game at his school last week. He was on the field during half time and did an AWESOME job!! Leading up to that night he really struggled and REALLY did not want to do it, but man was he proud of himself when it was over. It was so very cool and I am so grateful that he was chosen.
When I say he had a hard time with the idea of being in front of such a large crowd (and the fact that the older girls at school call him "cute"...he just can't stand that!), it's no exaggeration. I talked to the lady organizing it and also to his teacher. I knew it was so important for him to take on this honor and how great he would feel afterwards, but we had many conversations about it before hand.
I can't tell you how lovingly everyone involved approached the entire event.
After I talked to his teacher, she had a talk with him. She wanted to understand what he was feeling and help him feel better about what was going to happen. But she didn't stop there.
She asked him if he would talk to the class about this honor and about his fears. That sweet boy stood up in front of the room and told them what he was going to be doing and how it felt. Do you know what that sweet teacher had those kids do? They responded to Freddie with examples of times they were nervous or scared for something big like that. They told him things that they would do to help them through it. They helped him see that he could handle it and that they had been in his shoes at one time too.
She created the sweetest teachable moment. I still get tears when I think about it.
They did an extra practice for Freddie so he knew what to expect. And that night, part of the plan was to ride in a golf cart on the lap of the Headmaster, to the field. The Headmaster took Freddie under his wing before anything even got started and made it such a fun night.
There's just no way to express how that made us feel. All of it. What a blessing his school and everyone there is to our family.
Emotionally I have been all over the place lately, but I think that is what normal is for me. I'm not sure how it wouldn't be.
There are a few things that have happened that have truly brightened the world around me.
I was able to attend a luncheon for a wonderful organization - Elon Homes and Schools for Children. The program and organization itself are worth reading about, but the best part for me was that the speaker for the luncheon was Dr. Ben Carson. Not only do I think he is a a solid human, christian and american but he is also a world renowned pediatric neurosurgeon. It was an afternoon I will not soon forget.
I also have this friend who I am convinced has a direct line to God. She sends me texts and messages that are at exactly the right time and say exactly the right thing. And she couldn't know what is going on. We don't talk on a regular basis, she lives in Texas, she has a million and one things going on in her own life and there is just no way she could know. But she does. And she texts me that I was on her heart for some reason and this is what God wants her to tell me. You have no idea. It is stuff that I don't even say out loud or mention to anyone, but it speaks right to my heart...my soul...my fears. She has been on this truly, truly amazing journey in her faith and I wish everyone could know her. We all need a Shauna Shea in our lives. She is blazing a path with everyone she touches and I am so, so, so blessed to call her my friend.
Lastly I saw this movie last week, or maybe it was this week...who can keep up. I sometimes watch movies on my iPad while I make the formula at night. I often have to watch them over a few days, but I was able to see all of this one. The movie itself wasn't great. Kinda slow and one that would not have kept Fred's attention past the opening credits, but thankfully I watched until the end.
The message was clear - it's not about what God calls us to DO, but about who he calls us to BE.
I have thought about that so much over the last few days. I'm not sure that many people would choose the details of every aspect of the life they are living. I sure wouldn't. It's hard to say that and be thankful for all that I have at the same time. I feel like it's unfair to my husband and my children, even our sweet dog, to say that I wouldn't necessarily choose all of this. I might choose parts of it, but there is a ton of it that, in reality, I don't like at all. And I have a hard time with that, because I feel like I am supposed to be happy and satisfied with everything I do. And I have struggled with what I am being called to do. Like when I figure that out it's all going to make sense and then I get to sit back and reap the rewards.
But that isn't what it's about. At least that's now how I see it now. What I'm DOING is more about who I am BECOMING. I am supposed to BE who I'm CALLED TO BE in everything I DO.
In the weirdest way, that is so freeing for me. It's so closely related to living in the NOW, that it lets me almost forget about the future.
I have felt like I needed to structure Freddie's life so that when he is my age everything will be perfect. He can look back and just basque in the glory of all of the storybook tales of his life.
But there is no perfect. Life is not about storybook tales.
I have felt like I have to get everything just right for Logan so we don't have to make any more changes and everything can finally be perfect. He can just live and not have to struggle.
But there is no perfect. The reality is that most of his life will seem like a struggle if that is our perspective.
I have felt like I need to get our family on a schedule, have everything mapped out in our lives so that it can finally be perfect and we can relax. We can sit back and just enjoy.
But there is no perfect. Life is about life...the journey not the destination.
There is no perfect. There is now and there is right.
I can do the right things. I can teach right from wrong and that there is a right from wrong. I can lead by example and I can make huge mistakes. I can DO the best I can to BE the best I can, with no comparison to anyone else. It's not about what the world says about us, even though that is hard to remember.
There will never be a perfect, so we have to try to do the best we can every day. We have to make the best decisions we can every day. And we have to pick up the pieces when we make mistakes.
And I have to let go of what the future looks like and let God handle that. If I do what I am supposed to do right now and make the best decisions I can right now, that's all I have to do. God takes care of the big stuff.
This is one of those times I'm so thankful to have a God to believe in. It gives me that Peace and Comfort that I just can't find anywhere else.
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