Love Lifted Me

I've had love on my mind...being Valentine's Day and all. One of the hymns that continually ran through my mind during the first very difficult months of Ben's illness was "Love lifted me, love lifted me, when nothing else could help, love lifted me." I was singing this all the time...in fact, James knows all the words and he now associates it with "mom's favorite song".


Tonight we are expecting another 6-12 inches of snow. If it isn't snowing, it is because it is too cold to snow! We are all looking forward to Spring...though today Chet and James are at some ice fishing derby, they were telling me that the ice is 18" thick!


A quick update with Benjamin. We saw the keto doctor Feb. 3.  Benjamin's last blood work showed high ketones (7.6), initially we were told they do not like to see blood ketones above 7, but by this visit they had been seeing this trend in some of the other kids without having made any dietary changes, and some of these kids became seizure free when they hit (8). So we decided as long as he is still tolerating the diet well, we will wait and see if his blood ketones continue to climb. We did increase his daily calorie intake and made some supplement changes, both of which have given him additional energy, but have left medications and ratio alone. Ben has an upcoming ultrasound as a preventative check for kidney stones, the diet and one of the medications he is on both increase the risk for them. He will also have a CT scan, as there was an issue on his last MRI. The cyst is still decompressed, yeah! But...a small object was seen. The radiologist report said it could be a fragment of a catheter, but our neurosurgeon said it was most likely a calcification. The calcification view was confirmed by our keto doctor who also had access to the images, however it is agreed that a CT scan will help clarify this.  We have been assured that the size of the object is so small that it poses no risk to Benjamin. But as I have thought, and Chet has said, "How do they know that?" As Chet and I look inside our son's brain at home due to the marvels of modern technology, I can't help but wish this same technology was giving us an answer to why? and a cure for epilepsy to boot!


What we do have...is LOVE! And for this I am so grateful!



 I was sinking deep in sin, far from the peaceful shore,
Very deeply stained within, sinking to rise no more;
But the Master of the sea heard my despairing cry,
From the waters lifted me, now safe am I.

Happy New Year! a.k.a. "If you have nothing nice to say, don't say anything at all"

I haven't posted since October because quite frankly I have been in a very stagnant self-pity-party and my thoughts have been stuck on the dark side. I apologize for my absence because it does not reflect the reality of how much better we have been doing as a family! I will update that in a moment. Suffice to say, the battle continues and I think I am just plain tired ...weary...and definitely, heavy laden. We just moved through the seasons of "thanksgiving" and "blessing"...and certainly, we have received both...yet, I have been simply a.w.o.l., still not wanting to take this path that God has set before us all.  The truth is...I wish this battle was over, ...done, ...finis, ...just a chapter in an otherwise uneventful story. I have been, reluctantly, putting one step in front of the other and  taking one day at a time... just not necessarily staying on the path that God has chosen... 

But I am learning the truth of these words...

     "Whither shall I flee from thy presence? If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there. If I take the wings of the morning, and dwell in the uttermost parts of the sea; even there shall thy hand lead me, and thy right hand shall hold me. If I say, Surely the darkness shall cover me; even the night shall be light about me."

For even amidst my reluctancy there have been so many blessings among us and I am reminded time and time again, in the privacy of my soul, that:

     "The Lord is not slack concerning His promise, as some men count slackness; but is longsuffering to us-ward, not willing that any should perish, but that all should come to repentance."

In addition to God's faithfulness, I am learning how to be content where I am, knowing that to every thing there is a season, and a time to every purpose under the heaven:

Here is a little recap...

November

Chet and I decided to wait to start a medication wean with Ben until after thanksgiving. Chet was away for most of the month with work and we were having family visit for the holiday. We decided to stay put and enjoy the "status quo." We shoveled snow! And decorated for Christmas.

December

We started the medication wean Dec. 1st and had remarkable results. Benjamin went extended periods seizure free during the wean. However, his seizure frequency has returned to "pre-wean" status...yet, he is on one less medication and we are all enjoying those benefits. His alertness has dramatically improved and he engages us all significantly more, playing "games" with us and full of laughter. He is beginning to sit up on his own, though not for long periods of time and is increasingly becoming more mobile. James continues to do well in school and has fallen head-long into the deep hole of Star Wars hyperspace...not sure when he will be completely recovered. Overall, when we reflected upon our Christmas this year, we could not help but thank God that it was significantly better than our year before. We are getting out and about together so much more often and with so much less stress; Chet and I even had a "date night!" Benjamin is still enjoying seizure free days, which was not his reality last year this time. Thank you, Lord.

January

Cold...it has just been cold, cold, cold. Not much going on in all this cold but keeping warm!  Chet finished his last trip to Florida. It is nice knowing he will be home, no unexpected travel...we think. Benjamin had a follow-up MRI in Boston and it looks as if that cyst has remained decompressed. Very good news. We are still keeping surgical options open for future treatment, but for now we are continuing with the diet and adjusting medication to obtain optimal seizure control. We will be travelling to Boston in the beginning of February to meet with his neurologist to set a plan going forward. Benjamin continues to have therapy four times a week...and loves it. I definitely have been seeing positive results with his increased awareness. Unfortunately, we are seeing seizures, 2-3 times a week, but these occur at night, during sleep, which diminish their impact on his day-time activities.

And now some pictures to share:

Family Photo

At Boston Children's

Benjamin LOVED the lighted Christmas tree!

So did James, who daily rearranged ornaments.

Benjamin in his stander, which we put him in twice a day.

It is to help build bone density as he isn't yet walking and weight bearing.

As you can see, he really loves this view!

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!