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.
Saturday, February 15, 2014
Monday, January 20, 2014
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:
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:
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| Family Photo |
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| At Boston Children's |
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| Benjamin LOVED the lighted Christmas tree! |
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| So did James, who daily rearranged ornaments. |
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| Benjamin in his stander, which we put him in twice a day. |
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| It is to help build bone density as he isn't yet walking and weight bearing. |
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| As you can see, he really loves this view! |
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