It's the 2nd Day of Christmas-MERRY CHRISTMAS!! Such a great time of year! We have really, really enjoyed ourselves. Last Christmas Eve we were at midnight mass at St. Johns hospital, holding one baby and tearfully thinking of our other son who was just a few floors up in the NICU. How far we've come!! This year we got to eat Christmas meals, open presents, look at Christmas lights, attend Christmas parties, go to Silver Dollar City, watch the snow fall and do many other merry things...all together as a family of four. :-)) Our hearts couldn't be happier.
On the second day of Christmas, my true love gave to me, seizure-free days? Well, yes and no. The last three days have been plagued with large seizure clusters for Luke. Today is Day 18 on Ketogenic diet. I am deeply, deeply grateful to be able to tell you that of the last 18 days, 4 of those days were (at least as far as we could tell) seizure free. And the other 14 days, while not free of seizures, offered much fewer seizures than what had become "normal" for Luke. As you can probably imagine, this has given way to us feeling very, very hopeful on some days and on other days, well, kicking and screaming and cursing these blasted seizures for not leaving our Luke alone once and for all.
The truth is, it did come to mind a time or two (or ok, maybe like a hundred times) in the last two weeks about how great it would be if Luke were actually seizure free by Christmas. I mean, I know.....they said we had to try this diet at least a month before we could really make any judgement on whether it was working or not. But....seriously, how great would that have been? And who doesn't love a good Christmas miracle story? Ahhh....but alas, it turns out, the calendar that hangs prominently on our fridge for us to record Luke's seizure activity, is all marked up this week...a cluster here, a cluster there. So, Christmas '09 won't go down in history as being seizure free. Maybe next year? Maybe....and then again, maybe not. While I've been thinking a lot about seizures and miracles and Christmas and....all the rest.... well, I began to really know deep down that our Christmas miracle already came. Over 2000 yrs ago now. Not it, but HE. He came and He will always be what we need most....more than healing, more than miracles...more than a healthy son...more than anything. We need Him...His grace, His forgiveness....
He came to give us life....eternal life. THAT is a miracle. God becoming flesh to be near to us....to restore relationship with us. That's huge. And more than a healthy brain and perfect development and freedom from seizures, what Luke needs most, is the same thing all of us need the most....a Saviour. Not that I'll ever stop asking God for a miracle of healing in Luke's body. I would be disobedient not to. I think Scripture makes it pretty clear that God's will is for us to ask...and ask again...and keep asking and believing. But deep down....while I'm praying and asking...and pulling all-nighters researching the best care options for our son, and driving to yet another doctors appointment....and desiring almost more than anything for Luke to be healed....deep down, I know that the greatest miralce is salvation and eternal life. And more than seizure freedom for Luke, I want salvation for Luke. I long for the day when Luke will have perfect eye-sight, and crawl and then walk and run and talk to me and interact with toys and friends and be able to be a healthy little boy. I can only imagine when that day comes, how happy I'll be. I just pray that the day that Caleb and Luke ask Jesus to be their Savior and surrender their hearts to him, that I'll be rejoicing even more. Because that IS the greatest miracle of all.
We all have something we're hoping for in 2010....a different job, a new car, a child, financial provision, a husband or wife, good health, a new beginning, the list could go on and on. What we really need though, already came. I pray I never forget that truth, and that in the coming year I'll be more mindful that the greatest miracle of all has already been given to me. A Savior and forgiveness of sin....and eternal life with Him!!
If you're not tired of reading yet, I'm going to copy a blog post I read recently that really captures what I've been sensing in my own heart. Matt Chandler is a pastor in TX (we listen to his podcasts a lot) and he was recently diagnosed with brain cancer. One of his close friends wrote these thoughts after he heard the news:
December 16, 2009
Thinking of my friend Matt Chandler and the difference between Hope and Desire
I write this today because I need to. I need to tell myself these things. I just read the pathology report from the Village Church on Matt Chandler (http://ow.ly/MM81). I have known Matt for many years and love and respect him deeply. I am praying for him and for his sweet wife Lauren, and their kiddos, and the Village. And, I am praying with this in mind: there is a difference between desire and hope.
I am praying with great desire. My desire is that God would heal Matt, hand him to Lauren and the kids to be her husband and their daddy, restore him to the pulpit, empower him to preach his heart out for the magnification of Jesus, and one day let him play with his grandkids. I think God wants me to desire those things and ask Him for them, knocking until my knuckles bleed, making it clear to God how I desire Him to respond. And, those desires are good. But those desires are different than our hope.
Sometimes desires are not fulfilled. But, our hope is. Hope does not disappoint us (Romans 5:5). Our hope is certain and sure. Our hope is that none who trust in Him will ever ultimately be put to shame. Our hope is that in Jesus we are forgiven, given his Spirit, adopted as sons and daughters of God, and will one day be revealed as such (Romans 8:14-16; 1John 3:2-3). Our hope is that Jesus has defeated our greatest enemies of Satan, Sin, and Death and through Him we will triumph (Romans 8:37). Our hope is that God is sovereignly moving heaven and earth to secure the good of his elect and bring about their glory and joy (Romans 8:28). Our hope is that we who are in Christ are the eternal objects of God's love and that nothing, absolutely nothing, can change that status or rob us of its privileges (Romans 8:38-39). Our hope is that these momentary and light afflictions are preparing for us an eternal weight of glory beyond all comparison (2Cor 4:16-17); that the things we suffer are not worth comparing to the glory that God will reveal to us (Romans 8:18). Our hope is that God will not leave us nor forsake us so that even as we experience ten thousand shadows of death come over us, we shall not fear because He is with us (Psalm 23). Our hope is that He who raised the Lord Jesus will raise us also with Jesus and bring us into his presence (2Cor 4:14). Our hope is that if we have been united with him in a death like his, we shall certainly be united to him in a resurrection like His (Romans 6:5). And, our hope is that Christ, who is our great treasure, will be exalted as such whether by life or by death (Philippians 1:20). This is Matt's hope. He knows this hope; he lives this hope; he preaches this hope. Lauren knows and lives this hope as well, and Matt is blessed to have her at his side.
I just needed to tell myself that today. I need to remember that as I voice desires to be fulfilled and as I plead with the "God who is able," for Matt's strength and healing and restoration, I must not confuse my desire and my hope. I am holding tightly to hope and finding my comfort in the God of Hope. Praying we all will. Apostles Church will be praying for the Chandlers
Saturday, December 12, 2009
Here's an attempt to answer some the frequently asked questions about this Ketogenic Diet that Luke is on. Hope it's helpful!
How long will Luke be on the diet?-- The docs have asked us to commit to at least a month. There is still some "tweaking" of the diet that can be done, so that could add another couple of months. If the diet is successful (and measuring success can be complicated........but probably something like >90% reduction in seizures in addition to a normalized EEG) than kids are usually on the diet for 2 years, after which time we would try weaning him off. Many kids remain seizure free even after coming off the diet, others have to continue for another few years.
Doesn't he gain weight eating all the fat?--Interestingly, no. He is losing weight. Kind of a bummer, but the lesser evil compared to daily seizures.
What exactly does he eat? --For now we've chosen to do just the liquid Keto diet which has three components (all of which are carefully weighed separately on a gram scale and then mixed together in a bottle): 1) RCF--a soy-based, low carbohydrate formula 2) Unsweetened apple juice to provide a small amount of sugar/carb and to sweeten the taste 3) A fat source. For Luke we are are using either olive oil or heavy whipping cream.
As he grows, and if this works.....we will slowly add solid foods to the mix. The solid food allowed on the Keto diet are not so appealing for a one year old......bacon, mayo, lettuce, popcorn, omlets, etc. So, we'll probably wait another 6 months or so to make any big changes there.
Does Luke get a balanced diet? No, the diet is not balanced. Luke has to take a supplemental vitamin/mineral powder while he is on the diet. I should also just say here that the diet is not "natural". Our brains love glucose and are designed to be fueled by carbs. So, making the body run almost exclusively on fat and protein isn't natural or meant to be a life-long diet change.
How does it work?--Ahh, this is the biggie!! I'm not sure....and really the medical community isn't entirely sure either. Basically, when the body burns fat, it produces ketones. Whereas people normally get energy/fuel from carbohydrates, the keto diet allows for the body to burn fat for energy. The increased level of ketones has shown to cause a reduction in seizure activity. That's the "in a nutshell" version. You can find a plethora of information if you Google Ketogenic Diet.
What happens if Luke comes out of ketosis? Luke is now "in ketosis", meaning his ketones levels are increased. If he achieves seizures freedom, then we have to be very, very careful. Coming out of ketosis would easily cause a seizure. Believe it or not, that means carefully controlling pain meds (Children's Tylenol is loaded with yummy, grape, sugary stuff!!), antibiotics and EVEN lotions, soaps, toothpaste, etc.
The great part about doing the diet now, while he is very young, is that Luke can't really "cheat". Stories have been told of older kids on the diet who found a few crumbs on the floor and ate them, only to come out of ketosis.
Does Luke still have to take anti-seizure meds? Ideally, no. He is currently being weaned off his last anti-seizure med. (And for the first time in his life, will be off of ALL medication!!) Some kids do find the best results with a combination of the diet and meds. However, since the diet it typically used for kiddos who have drug-resistant epilepsy, many are strictly on the diet.
Is the diet pretty effective? Research shows about two-thirds are "significantly improved", meaning they achieve at least a 50% reduction in seizures. Seizure freedom occurs in about 10%-20% of cases. The encouraging, recent research shows that particular kinds of epilepsy (Infantile Spasms being one of those) show even greater success rates.
Please know you are welcome to ask any questions!! These just seem to be the ones that people ask the most.
Wednesday, December 9, 2009
Luke has done very well on diet...in terms of his lab work and actually taking to the special "menu". His blood glucose dipped down pretty low, but stabilized nicely. His Ketones are in the "large" range and his BMP is at a 15. Luke is on the 3:1 ratio right now. (Putting these details mainly for other Keto moms out there in cyberspace who happen upon this blog and find this information useful! You cannot believe how much I've learned from personal blogs of families around the country I have never met.)
All that to say, he's ready to go home!
The seizures? .... I know that's what you really want to know about, isn't it? ;)
Eh. Could be better. Could be a lot better. Luke usually doesn't get too upset when he seizes. A little foggy...a little out of it. Only twice can I remember him crying hysterically over them. Today was one of them. Oh yea, it was a doozie. Usually I count them....Today I lost count. The cluster seemed to go on and on. Luke screaming, me crying and the poor dietician just standing there. She had come to give her last instructions and say goodbye. I appreciate her so much and have learned a great deal from her the last two days. I had envisioned giving her a big hug and a great big "I think we're on our way to seizure freedom" smile by now.......
Instead, I'm standing there with a seizing child and can't hear a word she is saying cause my baby is screaming so loud. This post is for those of you who like the raw honesty. There it is.
So, we wait and we pray and we go home with high hopes that his new menu will help.
Did I mention we need a miracle? We do. Infantile Spasms aren't something you can just be treated for and then be on your merry way. The more we learn about it and the more we see Luke suffer from it, the more we realize that whenever and however it happens, seizure freedom will be a miracle.
Thank you to each of you has prayed this week. Really thankful Luke is tolerating the diet and that we get to go home this soon! Still feeling a lot of peace......and hope.
Tuesday, December 8, 2009
So Andrew, Caleb and Andrew's mom headed back to Springfield last night. Andrew had to work today. I'm here, holding down the fort. Had several people say, "Oh enjoy your time! Just you and Luke....you can rest, read a book, watch movies." I got to thinking, 'Yea, this will be pretty nice. Just me and one baby!" Came all prepared with my book, Office DVD set, and laptop.
Wishful thinking I guess.
My word...has it ever been busy today!! If you need to get caught up on rest, don't check in to your local hospital.
You probably already knew that.
Between blood sugar checks, ketone level checks and all the other "checking in", Luke and I didn't get much sleep. Luke woke up at midnight. Not sure what woke him up, but it's never good when he's startled from sleep. He seized 35 times. This morning he seized another 50 and then has had a few more throughout the day. The seizure monster is still here.
Luke seemed hungry for his 8 am bottle. He drank it down, but unfortunately, it didn't settle well and up it came (not ALL 8 oz thankfully). Mommy and Luke both covered. Yuck.
New outfit, new sheets, new blankets.
Docs were a tad bit concerned about the vomiting so they put an IV in, just in case. So far they haven't used it.
Good news!! Ketone levels are UP, blood sugar is stable!!!
Shortly after the first clean up effort, Luke got started at the other end. My friend Amy in Kansas tells me parents should never make public the details of their children's "business". And I agree with her. I'll move on...
new outfit, new sheets, new blankets
Bridget, the dietician came in and taught me how to measure out the bottle. Me and my gram scale are soon to be great buddies. We also went through the computer program (Keto calculator) that will help us plan meals in the future, once Luke isn't just eating formula. As I was making the bottles, I realized, "Wow, this is A LOT of olive oil in one day" I'm pretty sure my Italian grandma doesn't even have that much OO in a day! As we're measuring......we hear funny sounds from Luke's bed.
new outfit, new sheets, new blankets
S0000....I ask Bridget if we can try to swap out the OO for heavy cream in two of his bottles. We'll alternate. The cream can slow things down, the OO gets things going (obviously!) so starting at 4 pm, we'll try that.
For now, Luke is doing well. He's a little sleep deprived, but other than that, ok. Of course, it will be awesome when we can FINALLY say he's seizure free. Day by day and moment and moment though, we realize that abundant life doesn't come in wishing it all way and living only for seizure-free days. As the blinkie at the top of this page says, "Be happy for this moment, this moment is your life." We enjoy every moment, we soak it in......THIS is the day the Lord has made, I will rejoice and be glad in it! Here are some photos of our moments...
His famous sleeping pose
This is my great aunt. Haven't seen her in years!! She surprised us yesterday with a visit. She officially set me straight on twins on the Hoggard side. My great-great grandpa was a twin. My great-great aunt had twins, my great-great aunt on the other side had twins, and two of my grandpa's siblings have twin grandchildren. (hope I got all that right!) Suffice it to say, when asked "Do you twins run in your family?", I will now say, "Yes!" Thanks Aunt D for settin' me straight!!
Grandma and Luke
Mommy's Keto meal.
Luke and his many band-aids. He's about to run out of fingers.
Monday, December 7, 2009
What a great day!! Happy to say, everything has gone so well today. Andrew, Luke and I got to St. Louis Children's this morning around 8:30. (Grandma and Caleb stayed back at the hotel). Luke was admitted and we settled quickly into Luke's private room. Yay! We're waaay up on the 12th floor with some awesome nurses, nerdy neurologists (hey, you WANT your neurologist to be nerdy, you know what I mean?), and one spectacular dietician!
Luke's dietician, Bridgette. She's great!!
Turns out Luke DIDN'T have to fast all day. They changed their policy for kids under 2. So, he ended up waiting only until 1 pm at which time we gave him his first Ketogenic meal! We've weaned the Topamax and today we're starting to wean him off Vigabatrin. Adios drugs, hello RCF formula, apple juice and....olive oil. Yea, for real. We had a choice of adding heavy cream or olive oil and the Italian half of me immediately blurted out, "We'll take the olive oil" My husband looked over and grinned and then shook his head at the nurses saying, "She Italian, what can I say?" Now before you feel sorry for Luke having to down what sounds like a nasty concoction, let me tell you. The kid LOVES the stuff. He has successfully guzzled 3 of these bottles now. He likes it, Mikey likes it!!!
Luke sucking air....drank the bottle DRY!
What's the plan now? Well, every four hours Luke has his blood sugar checked. So far, so good there. No drastic dips. Praying it stays that way overnight. Secondly, we're waiting for his "ketone" readings to increase. It's the production of ketones that can sometimes, surprisingly, stop seizures. When the body processes fat, it produces ketones, hence the high fat diet. Believe it or not, that's it! It all looks so simple when I type it out like this. Of course, there are things that could go wrong, but they seem fairly minor at this point....blood sugar drops, which would mean he'd have to get an IV or extra apple juice, acidosis which would require a tweak in the diet, and potentially (though rarely) some vomiting and lethargy as he gets used to this new menu.
Nurse checking yet another blood sugar. Luke is NOT fond of this process.
There seem to be so many different thoughts I could write at this point. But for tonight I'll just mention how much peace we feel. When it came time to decide how to treat these stupid seizures, I had the most peace about this diet option. And while I would still make the same choice, it hasn't always been easy these past two weeks....counting seizures, weaning meds, watching Luke's little body jerk beyond his control, all the while knowing you made the right choice, but just wondering how it was all going to play out. Luke seized 30 times on the way to the hospital this morning. I watched, I counted, I held his hand there in the back seat of our van and then I really couldn't do anything else but just close my eyes. I asked God to please grant us the peace we needed and the assurance of His presence. God really did that for us today. We checked in, rode the elevator up, found our room, walked in and.........peace.
There were three people watching over Luke today. First, his nurse who graciously listened as I told her Luke's history and how we'd come about making this choice for the Ketogenic diet. She said, "you did the right thing"...and not in a nurse kind of way and maybe not even in favor of the Keto diet, but in a mom kind of way of "you followed your heart, kid, and there's a lot to be said for that." peace. Secondly, his dietician spent a lot of time with us today. She's the barista serving up these yummy Keto drinks. :) We were talking to her about the use of the Keto diet in different kinds of epilepsy. She says, "Well, we use it for all kinds, but it's especially effective with infantile spasms." She rattled off about 5 more rare-sounding syndromes and conditions that have shown success with the Keto diet, but then came back to "But infantile spasms in particular have really responded to this diet" peace. Our last visit tonight came from the attending doctor. Never met her before. She comes in, meets Luke and looks at us and says, "So I hear you've been doing some reading. Your doctor tells me you all read the article from Johns Hopkins comparing ACTH therapy and the Keto diet. I applaud you for your interest in your sons care. I mean to sit and read through medical journals..... you guys are serious about educating yourselves on all this" (Thank you!! Thank you Dr. Neuro for acknowledging that us parents might understand a thing or two. And we are capable of plodding through medical journals and making sense of it all.) She goes on to say, "Now if it were me.." And I was thinking, 'Oh, here we go. She's gonna tell us she would have done the steroids, but she respects our decision and we'll just see what happens' But, no!! Her sentence ended with, ...."I would have done the same thing!!" ::sigh:: peace.
Must get to bed. Luke and I are snuggled in for the night...both of us in our Christmas jammies. For now I'm just pondering this....Do I wish Luke would never have another seizure? Yes. Do I wish were weren't staying another night at a hospital? Yes. Do I know what tomorrow will bring? Nope. Am I scared that I don't know what the future holds? Sometimes. Do I feel peace right now despite all of that? For sure!
The hospital looks beautiful!
Caleb and I in front of the BIG tree.
Caleb exploring St. Louis Children's art pieces. He had so much fun!!