TIRED

Twelve, one, two in the morning, and he's still awake?
I already need a cup o' Joe
Restless, toss'n and turn'n, with cry and crank
Eventually, Praise God, to sleep he goes
Day dawns way too soon...he's up, happy, smiling and in full bloom! ? !

Loving God

Romans 8:28 And we know that all things work together for good to them that LOVE GOD, to them who are the called according to His purpose.

I have been using my free-time to study and meditate upon the word of God, which has not left much time to blog, nor study and meditate upon my circumstances...which has been very good for me! So, I do not notice how tired I am from being sleep deprived, how defeated I can feel in this battle against epilepsy, and how the routine of my life just sort of blends together in what can seem like one unending chore. I am resting in this promise today, that all of this in our 'here and now' is working together for good according to God's gracious purpose for our lives.

God's word helps me to see His Grace day to day. I should not try and live without it!

Benjamin has been well. We are now almost two weeks into a medication increase. His sleep is very sporadic. He will often wake up in the middle of the night crying/screaming in his sleep. Sometimes he can be consoled quickly, other times not. But his days are good. The medication increase definitely is 'dulling' him a bit, but he still works very hard at exploring his environment. In fact, I am impressed by his tenacity to accomplish something, considering what effort it takes due to the medications and his low muscle tone. We haven't seen much change in his seizure frequency, he is still averaging about 3-4/week, but I do think they have decreased in intensity, just a little.

We now go outside the home three times a week for physical, occupational, and speech therapy; and we have in-home physical therapy once a week...so his schedule is quite full. Benjamin loves it. He loves travelling in the car (though on the med. inc. he often falls asleep). He loves impressing the ladies (therapists) with his commando "crawling" and playing with all their very cool and fun toys.

James has been doing very well in school, helping dad around the house, and enjoying the late night bonfires they have on weekends. He is still very much into mining...hence this supply list he made. He wants his dad to take him up north, Moosehead Lake region, for some gold exploration. He has already informed me he wants a pick axe for Christmas!

 

Chet and I...well, let's just say lack of sleep can cause many strange things...however, we make a good team and are becoming very adept at forgiving and forgetting...and I might add functioning without sleep.  : ) Laughter still abounds in our home, as does unexpected acts of kindness...just more evidence of God's Grace at work in our lives. Thank you, LORD!

We have been working on "self-feeding."
Keto note: the avocado is the perfect keto food as it is naturally 4:1 ratio of fat:carbohydrate!

My camera card had 106 photos...90% lego action shots, self-potraits of James, and the random lot of pantry shots because it is so cool to go into a dark room and get to see what's inside via the camera flash!

Two Videos

 

 

We will be going places!

 

Benjamin, we all love your laugh!

Diamonds

 

I found this on our deck the other day. Blue bucket, filled with dirt, topped with grass...I asked James what he was doing. He tells me he found some coal, maybe asphalt, at school; he buried it in the dirt and is waiting for them to turn into diamonds. : )

Before Mommy says anything, I thought I should look into what exactly a diamond is and how long does it takes to create one. This is a little bit of what I discovered:

Diamonds are not particularly rare, but "A Diamond is Forever" marketing campaign launched in 1948 by the South Africa-based De Beers, the world's largest diamond producer at that time, created a huge market for them,..."the geological equivalent of a bouquet of red roses" (quoted from a Smithsonian magazine article).

The interest in producing diamonds began in the 1870's with the discovery that diamonds are made out of carbon, but it wasn't until the 1940's that systematic research began to develop processes to "grow" diamonds. Today, synthetic diamond (also known as laboratory-created diamond, laboratory-grown diamond, cultured diamond or cultivated diamond) production is hot! But not for what you may think...for electronics! Almost all electronics utilize semiconductors to transmit electricity, these semiconductors have been made almost exclusively with silicone. Silicone, which is extracted from sand has two significant drawbacks, it is fragile and overheats. Diamond has similar properties as silicone with the added benefits of being more rugged and it does not break down at high temperatures.

Diamonds are already being utilized in many products today: loudspeakers, cosmetic skin exfoliants, and high-end cutting tools for granite and marble. The military is interested in diamond for different applications such as lasers and wearproof coatings. In the realm of scientific research, there is a device called a "diamond anvil cell" scientists use to test what happens to different materials under very high pressure.

Currently, there are laboratories in the US and abroad that are capable of creating a diamond. There are presently four known methods for producing diamonds: HPHT (high pressure high temperature), CVD (chemical vapor deposition), detonation synthesis, and treating graphite with high-power ultrasound. There is a lot of technical information that I do not completely understand, but bottom line is that they are making diamonds and capable of doing so in a day.

I am not blogging about the natural vs. cultivated diamond debate...and the debate is very complicated and heated, as it directly affects the diamond market! I am interested in the belief held by many that the earth is billions of years old.

This is quoted from the same Smithsonian article: "More than one billion years ago, and at least 100 miles below the surface of the earth, a mix of tremendous heat and titanic pressure forged carbon into the diamonds that are mined today. The stones were brought toward the surface of the earth by ancient underground volcanoes. Each volcano left a carrot-shaped pipe of rock called kimberlite, which is studded with diamonds, garnets, and other gems."

Yet, today, man is reproducing similar conditions and producing diamonds...in a day.

 My question is simply, if man can do this, can't God?

"For in six days the LORD made heaven and earth, the sea, and all that in them is, and rested the seventh day:"

"For the invisible things of Him from the creation of the world are clearly seen, being understood by the things that are made, even His eternal power and Godhead; so that they are without excuse:"

"The researches of the geologist are far from being unworthy of the Christian, or the philosopher: for, while they enlarge the bounds of our knowledge, and present a wide field for intellectual employment and innocent pleasure, they may serve to conduct us to the glorious Being." from 'Geological Survey' (1828) by George Young.

My prayer for my budding geologist is that he would discover the truth of these words:

"The heavens declare the glory of God; and the firmament showeth His handiwork. Day unto day uttereth speech, and night unto night showeth knowledge. There is no speech nor language, where their voice is not heard."

Photos

The Cage is gaining in popularity.
 

One of Ben's favorite spots, outside of "the cage."



It is under the toddler bed we use as a changing table.

Yes, it is very cool!

Moving On

 

"Or whether it were two days, or a month, or a year, that the cloud tarried upon the tabernacle, remaining thereon, the children of Israel abode in their tents, and journeyed not: but when it was taken up, they journeyed."

James and I were just reading Numbers, chp. 9 this morning about how God led His people through the wilderness by a pillar of cloud by day and the appearance of fire by night. I wish I could say something very "spiritual" right now...but when I read this verse I think of having to "move on," and at a moments notice. I think of the work entailed and the leaving of a familiar place to perhaps one which is not so familiar. The truth is I love setting up camp, I have to immediately make "home" whether it be in the wilderness or a hotel room. And I am most comfortable once "home" is in place. When it is time to move on...well, not so much.

Ben's seizures are slowly increasing in frequency, but also in duration and intensity. We have known that we would be making adjustments in his treatment, and now it is time to forge ahead.

Our first step will be to decrease his diet ratio. We are going from 2:1 to 1.75:1. I'll just have to learn new recipes/calculations. We will have labs done after a week to see if his blood ketone level has come down. He is at a very high level, too high and it can make someone feel ill. In some cases, children have had better seizure control with lower ketone levels. Just to give some perspective, Ben's last level check was 7.4, our keto clinic does not like to have levels over 7. Our nurse was telling me that they have some children who at a diet ratio of 4:1 are only getting blood ketone levels of 2. We will stay at this "step" for 2-3 weeks. The challenge in all of this is not to make too many changes at once, therefore making it difficult to determine what is or is not working. The risk is always an increase of seizures thereby making it far more difficult to do one thing at a time. I do believe after this we will be making medication changes. These are the changes that are more challenging because they often are accompanied by disruptions in mood, sleep, alertness...One thing is for certain, the journey continues. Our goal is still seizure freedom for Benjamin.

My prayer is that God's presence and guidance would be as visible to us as it was to the Israelite's during their desert wanderings. I pray that I would not only be willing to move on, but filled with expectation, for though I may not know the territory this journey is leading us through...I do know Who is leading this journey!

And More Photos

Keto Kitchen - Benjamin's Shelf

Our new play yard that James' has dubbed "The Cage"

As you can see it is enjoyed by all.

They really do love it! And so does mom as it keeps Ben safe
from knocking his head and gnawing on furniture!

Photos

Lawn mowing on a summer afternoon.

My beloved boys.

Chet's plan is to "start them early."

Catching some air!

Solitaire is more fun shared.

Benjamin's Story

Tuesday, August 14, 2011

A day at the lake...we were spending at least 2 days a week at the lake that summer. I was nursing Ben, now 4 months old, in our beach cabana when he stiffened, his eyes deviated left and his left hand began to twitch. I tried to "call" him out of it, but could not...gut instinct, something was very wrong.  I left James with a friend, who would also pack up a ton of gear! Ben's seizure had stopped (which is how my mind was describing what had just happened) and he was completely comatose. Limp and lifeless...I thanked God he was still breathing which helped me to keep some level of calm while we drove to the emergency room.

By the time we were being admitted to ER, Ben had woken and he was his normal self. The nurse and later Dr. were beginning to question whether or not I wasn't overreacting in some way. The ER happened to be full, so we were waiting, and waiting and waiting some more to be discharged, during which time Ben had another seizure, this time the Dr. saw it...next thing we knew there is a call being made to the neurologist on call at our city children's hospital and we were being transported there via ambulance.

We were admitted...immediately began blood draws, vitals, an IV is put in, he was given a bolus of Phenobarbital, then Keppra, an EEG was ordered (which came back normal), then a MRI...what can I say...this was all being done to my baby!

An arachnoid cyst was found in his left ventricle, but initially we were told that it wasn't causing any pressure on the brain, we would have to keep an eye on it though. We were sent home three days later, with Keppra and had been told that this was most likely Benign Rolandic Epilepsy, which he would eventually grown out of. At home, his seizures increased in number and intensity, we were back at the children's hospital...more blood draws, vitals, IVs, another EEG, boluses of medication, one bout of roseola. This time we met with the neurosurgeon who told us that there was in fact some slight pressure on the brain and that Ben would need endoscopic surgery to fenestrate the cyst, this would alleviate pressure and more than likely the seizures would cease. We ended up through a series of personal contacts being transferred to a larger city children's hospital for the surgery. The consensus among all the Dr.s was that the surgery would most likely take care of the seizures, which continued unabated even though we were steadily increasing Ben's meds.

Worst part...is that I had been doing my own internet research and I could find cases of arachnoid cysts causing seizures and once removed the seizures ceased. However, they were all located on the outside of the brain itself...I could not find one case of one located within a ventricle that once removed there was seizure improvement...so while we kept hearing "positive" outlooks I had a very nagging suspicion that this was not going to deliver all that was promised. And indeed, it did not.

Ben had brain surgery, 10 days after the lake incident. The next three weeks, Chet and I lived in the hospital taking turns sleeping on the recliner while the other slept on the floor. More blood draws, a whole lot more vitals, more IV's (I learned to guard that site with my life!), more medication boluses and changes, more MRI's, more EEG's, one horrific lumbar puncture, genetic and metabolic testing all coming back normal...and more, much more, seizures.

Chet and I initially wanted seizure control before we left the hospital...but after spending a total of one month between the two hospitals...we wanted to be home, we wanted Benjamin home. The extended time away from mom and dad, spending time with relatives, was taking its toll on James too.

Life did improve once we were home and we were working with a local neurologist, in some ways...because being introduced to epilepsy really sucked! Epilepsy is very broad...and I heard all kinds of stories of someone knowing someone who had seizures, had them controlled with medication and eventually grew out of them. But that is one end of the spectrum, the one where we did not land. We were in that small percentile that once you fail two medications your chances of getting seizure control diminishes quickly!

Failed medications: Phenobarbital, Keppra, Topiramate, Clonazepam, Ativan, Onfi, Trileptal, Zonisamide...Diastat (does work to stop a seizure).

Ben's development pretty much halted at 4 months. And the side effects! from seizures, from the medications and medication changes (the weaning on and off), from the surgery itself, were difficult adjustments that we as a family all had to make.

We still were not getting seizure control, though we did achieve some improvement...going from 150 seizures a month...to 60-70. Our local neurologist suggested the ketogenic diet in December, and we scheduled a consultation back at the big city hospital. I was not ready to go forward with the diet as I had wanted to wean Ben to solid foods and honestly, I knew it was going to be a lot of work and I was still hoping we could find a medication that would stop the seizures. It was when I finally read "Ketogenic Diets" by  Dr.s Kossoff, Freeman, Turner & Rubenstein, that I changed my mind. Meanwhile, we had two followup MRIs that showed the cyst slowly growing back! We chose to have another endoscopic surgery before starting the diet. To take that player out of the game, so to speak.

Ben's second surgery was performed in March of this year. This surgery was better in that we only stayed one night in the hospital and Ben did not have any increase in seizure activity (at this point he was averaging 2 a day)...however, it took almost 2 months for him to completely recover. He had just begun to roll-over before surgery, and he lost that ability or forgot how. A followup MRI in July showed the cyst still decompressed, Yeah! A fenestration doesn't remove the cyst, it perforates it and allows it to drain. We will have another follow up MRI in January, 2014.

Our Ketogenic initiation, which includes a 4-day hospital stay, was scheduled for June. I had just finished reading a great book," The Gaps Diet" by Dr. Natasha McBride and I was using it as a guide to introduce solid foods with Ben, while weaning him. The diet is naturally high in fat and very similar to the Keto diet and though we did not have improvement in seizure frequency, we did notice improvement with his overall alertness. Subsequent bloodwork done showed Ben was making ketones, and I was questioned about what I was feeding him...one thing repeated over and over again in the book "Ketogenic Diets" is: do not attempt this at home! Ben was also getting constipated on a regular basis...so, I backed way off the fat. Ben's seizures started to grow worse in intensity, coincidence? hard to say, but I was now administering diastat on a regular basis. Initiation was only weeks away! The weekend before we were scheduled for our one week stay to initiate the diet, Ben caught a stomach bug that James had had...he was spiking a huge temp., and wouldn't eat...but he had a couple seizure free days! To make a long story short, we went down for their Keto Clinic, blood work showed Ben was deeper in ketosis, we had a quick consult and we were heading home to start the diet! One hospital stay averted.

That brings his story up to date. My pregnancy and his birth were both without complications. Because of my age we had had two high-powered ultrasounds that had shown nothing unusual. In hindsight, we may have been seeing some early signs...the week prior to the lake, I had noticed him staring off in an odd way while nursing, no alarms going off, but I had wanted to mention it to our pediatrician that Friday at a scheduled well-check.

This excerpt leaves out quite a few details and certainly could not contain the volume of tears shed and prayers uttered. But one thing is for certain...GOD IS WITH US! Our Creator, He who knit Benjamin together in my womb, He who knows the end from the beginning, Our Savior, He whose Grace is without measure, is with us!

"And there are also many other things which Jesus did, the which, if they should be written every one, I suppose that even the world itself could not contain the books that should be written."

A Benjamin Update

Ben's seizure count is ever so slowly creeping up each month that goes by. He is still having seizure free days, Thank God. He is most definitely teething, the larger teeth both top and bottom coming in. Of course, Chet and I desire a stronger seizure control that can weather these storms.

His EEG report came back, "somewhat better than last time, no right side abnormalities, left side abnormalities persist but less frequent than prior, no sub clinical seizures seen," The left side abnormalities are spikes that indicate seizure activity could happen.

Lab results came back fine, he is still making very high ketones, higher than they like to see at our Keto Clinic, however glucose, electrolytes...are still okay. His medication levels (the two medications that can be measured) are low and are considered barely therapeutic.

Our Keto neurologist is on vacation for two weeks, so Chet and I elected to hang tight until she returns to discuss our next step. We are definitely keeping the diet for now, but would like to try and achieve complete seizure freedom for Ben, balancing this with giving him the optimal opportunity to develop. He is sooooooo trying to crawl, but his tone is still very low. So once again, we wait, prayerfully he will not take any sharp downward turns.

When peace like a river attendeth my way, when sorrows like sea billows roll; whatever my lot, thou hast taught me to say, "It is well, it is well with my soul."
Though satan should buffet, tho' trials should come, let this blest assurance control, that Christ has regarded my helpless estate, and hath shed His own blood for my soul.
My sin...O, the bliss of this glorious thought, my sin...not in part but the whole, is nailed to the cross and I bear it no more, Praise the Lord, Praise the Lord, O my soul!
And, Lord, haste the day when the faith shall be sight, the clouds be rolled back as a scroll, the trump shall resound and the Lord shall descend, "Even so"...it is well with my soul.

Mining For Gold

This may or may not look like our herb garden...but it is actually a gold mine, and gold has been found!!! Hooray! : )

It is a process...you have to collect the dirt, sift out the larger rocks (which can be broken open later with hammer, proper safety equipment worn), then "panned" out...if you look really close you can see the gold! : )

Then it is always interesting to take a closer look...

It is truly a joy to watch with what enthusiasm James works at his projects.

My son, if thou wilt receive my words, and hide my commandments with thee; so that thou incline thine ear unto wisdom, and apply thine heart to understanding; Yea, if thou criest after knowledge, and liftest up thy voice for understanding; if thou seekest her as silver, and searchest for her as for hid treasures; then shalt thou understand the fear of the LORD, and find the knowledge of God. For the LORD giveth wisdom: out of his mouth cometh knowledge and understanding.

From Proverbs 2, and my prayer today for James, that he may with even greater enthusiasm treasure up the word of God.

 

Intractable Epilepsy, Yet...

From Webster's Dictionary:

1. Intractable: a) hard to manage; unruly or stubborn b) hard to work, manipulate, cure, treat, etc.

From Epilepsy Foundation (.org):

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.
Intractable: Seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures. Also known as "drug resistant." The International League Against Epilepsy (ILAE) defines drug resistant epilepsy as "a failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom."
Most authors report that antiepileptic drugs provide complete control for more than half of all patients with epilepsy, and reduce the number of seizures in another 20 to 30 percent. The remaining 20 percent do not respond to current medications and their condition is termed "intractable" or "refractory to treatment." Some of these people may have other treatment options, such as surgery, or (in children) the ketogenic diet.

Ben's diagnosis...still...after 9 different medications, 2 endoscopic brain surgeries, 5 MRIs, a dozen or so EEGs, 3 different genetic tests, extensive blood work, metabolic testing, ketogenic diet...and there will be more to come because Chet and I must press on, even though the way is hard, until we have gone the distance.

My constant prayer these days is:

If any of you lack wisdom, let him ask of God, that giveth to all liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that waverth is like a wave of the sea driven with the wind and tossed.

There is nothing like a morning seizure to toss me about like a wave of the sea!

Yet...

how sweet that word is in the Word of God:

Although the fig tree shall not blossom, neither shall fruit be in the vines; the labor of the olive shall fail, and the fields shall yield no meat; the flock shall be cut off from the fold, and there shall be no herd in the stalls:
Yet I will rejoice in the LORD, I will joy in the God of my salvation. The LORD God is my strength, and He will make my feet like hinds' feet, and He will make me to walk upon mine high places.

Heavenly Father, please make Benjamin's feet like hinds' feet that he may walk upon Thy high places.

Some Photos

Who is that cutie patootie?

This is our exercise room, we each have our own ball for bouncing.

This is my photographer. James takes most of our photos. He will take off with the camera and come back a few hours later and the camera card will be full!

Favorite pastime this summer.

Teething!!!

I had to add this one because my camera card will predominantly be filled with photos like this one. This is James' version of LEGO's 'Museum Heist'.

Breakers

Benjamin started the ketogenic diet back in early June. He became seizure free after one week. One day shy of one month I sent out a "universal" e-mail to family and friends sharing with them our joy and gratefulness...the very next day he had his first breakthrough seizure. We are now officially three months into the diet, which is typically the "trial" period that keto centers would like you to commit to in order to determine if the diet is working for you. We have had three "series" of breakthrough seizures. The first two times I reacted...the first series, we added back medication we had been weaning; the second, we upped the ratio from 1.5:1 to 2:1...both changes stopped the seizures...or did they? In both instances the seizures ceased the very day I initiated the change. We have now had a third "series" of breakthroughs...and we have done nothing...and they stopped.

 Sooooo many thoughts.

 It is very difficult to remain still in the midst of a storm, my first reaction is to "Batten Down the Hatches!" It is against my nature to "wait and see," but our experience with epilepsy is it has been a slow and agonizing process of wait and see." I am thankful to the Facebook support group, Ketogenic Parents ROCK!!! It is there that I read over and over again how teething can cause breakthrough seizures and was encouraged to stay the course with the diet. Did I mention Ben is teething something fierce?

We are gathering what information we can for when he has a series of breakthroughs we also see an increase in coreoathetoid-type movements with him. This time around we are also seeing a strange arm...I don't even know what to call it..."twitch," which we believe may also be seizure activity. So he had a routine EEG yesterday, and today we will go for bloodwork.

Do I think the diet is working? Definitely. I have to remind myself, often, (this diet is a lot of work!) that the fact I am concerned about breakthrough seizures is because the diet is working. Ben has never been seizure free prior to this diet. Since starting the diet and giving his brain a break from daily seizure activity, he is able to reach and grasp for toys, smile and laugh, sit up in his bumbo without falling backwards, play games with me like "peek-a-boo" and "fishy face," he can maintain eye contact so much better and respond to his name...there is no doubt that the quality of his life and ours is so much better.

My "diet" this last week has been from psalm 62:
     My soul, wait thou only upon God; for my expectation is from Him. He only is my rock and my salvation: he is my defense; I shall not be moved. In God is my salvation and my glory: the rock of my strength, and my refuge, is in God. Trust in him at all times; pour out your heart before Him: God is a refuge for us!

My Hope Doesn't Float

My hope doesn't float. When  I think of floating hope, images of a yellow rubber duckie being tossed by every wave and carried along by every wind and current, comes to mind. Epilepsy descended upon us as a tempest, out of nowhere, and it continues to storm in our lives. I thank God that I have an anchor that holds. It is from these words that I chose to name this blog:
"We might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: which hope we have as an anchor of the soul, both sure and steadfast, and which entereth into that within the veil;"  (from Hebrews, chp. 6)
And I have fled for refuge to my God....I am still flying each and every day....only to find that He's already Got Me!!!