Last week's EEG went rather well in most respects. Judah was such a trooper, not crying and sitting incredibly well through a rather lengthy process of securing all the electrodes to his head for his EEG. I probably was more impatient with the technician administering the EEG than Judah was! I wish I could post the picture I have of Judah on my phone. His head was wrapped in two rolls of gauze, secured with two rolls of medical tape. It was definitely overkill on the securing of the electrodes. Nevertheless, Judah managed to fall asleep nearly on cue, probably due to the sheer weight of his poor head! And, I believe the tech. was satisfied with the test. I will probably hear about the results this week.
As for Judah's neuro. eval., the main concern raised was his growth. After measuring Judah, it became clear that further follow up is necessary. I agreed to have him weighed and measured in another three months and go from there. The potential is that Judah will have to go through some tests to determine if there is a growth hormone deficiency. The tests involve bloodwork, an x-ray of his hand, and some other test that stimulates his pituitary gland to release growth hormone. The treatment for growth hormone deficiency is to receive shots of growth hormone. How frequently? I don't know. How much? I don't know. I have chosen not to worry about those things until I have to. I'm not really all that excited about the possibility of having to subject Judah to yet one more thing, let alone the unknown side effects of receiving injections of growth hormone.
Please pray that Judah will grow sufficiently in the next three months, particularly in his height, and that there will be no need to even have the growth hormone tests done.
Tuesday, I am taking Judah for a follow up opthamological exam. He has been doing much better sitting for these exams. Pray that he will sit well for this exam and that Dr. Abrams will see all she needs to see with no reason for concern. This may sound strange, but because I know the staff will be dressed up for Halloween (no ugly, scary costumes...just kid friendly costumes; I've already asked), pray that Judah will not be scared or alarmed by their costumes and make our visit ineffective.
Finally, you can always pray for Tucker's sitter. My friend, Marie, will be watching Tucker tomorrow, and she already has two toddlers of her own with a third baby due in December! I have GREAT friends, but I always want to ask others to be praying for God to bless them as they serve me and my family tirelessly with these doctors appointments.
Thanks again for your prayers, and I will be sure to update next Monday if not before on how the eye appointment goes for us tomorrow.
LORD, you have assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance. Psalm 16:5,6
Monday, October 30, 2006
Monday, October 23, 2006
EEG/Neurological Evaluation
This Thursday Judah will have what I believe is his last EEG from the study he's participated in from birth. I think it'll be his 8th EEG. For the last seven EEG's, we've been able to celebrate and give thanks to God for a good report. We are, of course, praying and asking you to pray that this 8th EEG will again show that Judah's brain is functioning as it should, and that there are no signs of SWS involvement in his brain. There may be future EEG's as a way to continue to follow up with any possible new developments, but I'm hoping they won't be quite as frequent as the ones we've done for this study.
We will also be seeing Judah's neurologist who will give him a general evaluation as well. There are some matters to discuss with her, and I need God's wisdom to guide me. The first issue is that of his growth. Upon Judah's last routine pediatric visit, it was noted that he fell off his growth curve in both weight and height. This is of some concern as it has been observed that there are higher percentages of growth hormone deficiency among Sturge-Weber patients than there are in the general population.
The second thing I need to discuss with Dr. Comi, Judah's neuro., concerns an oral surgeon for Judah. Judah's dentist recently recommended that Judah have an initial consultation and be followed long term by an oral surgeon for the purpose of watching, and intervening if necessary, Judah's jaw bone growth and joints in that area. She referred us to someone specifically who happens to be right up the road: very convenient. However, upon discussing this with Judah's neurologist and asking for her input, she recommended an oral surgeon at Hopkins who the SWS team at Hopkins has great confidence in as well. He is apparently already following and treating at least one other SWS patient and has had much success with this child.
I am grateful that there is even this kind of care available for Judah, but am now faced with the decision of what/who is best. I have recently been made aware by the kindness of God through His Spirit that I have neglected to pray about many of the more recent decisions regarding Judah's health and dr. follow ups. I have simply filled every prescription written, made every appointment recommended for follow up, and acquired every referral deemed necessary by his doctors. This leaves me feeling like a hampster in an exercise ball, unnecessarily running like crazy without getting very far.
My intention is never to withhold the medical care needed for Judah's well being. I just want to be consulting the One who is Judah's Creator and Sustainer and find out from Him what doctor's appointments to make and keep, what prescriptions to fill and administer and what tests, procedures and new specialists to pursue.
Please pray that:
We will also be seeing Judah's neurologist who will give him a general evaluation as well. There are some matters to discuss with her, and I need God's wisdom to guide me. The first issue is that of his growth. Upon Judah's last routine pediatric visit, it was noted that he fell off his growth curve in both weight and height. This is of some concern as it has been observed that there are higher percentages of growth hormone deficiency among Sturge-Weber patients than there are in the general population.
The second thing I need to discuss with Dr. Comi, Judah's neuro., concerns an oral surgeon for Judah. Judah's dentist recently recommended that Judah have an initial consultation and be followed long term by an oral surgeon for the purpose of watching, and intervening if necessary, Judah's jaw bone growth and joints in that area. She referred us to someone specifically who happens to be right up the road: very convenient. However, upon discussing this with Judah's neurologist and asking for her input, she recommended an oral surgeon at Hopkins who the SWS team at Hopkins has great confidence in as well. He is apparently already following and treating at least one other SWS patient and has had much success with this child.
I am grateful that there is even this kind of care available for Judah, but am now faced with the decision of what/who is best. I have recently been made aware by the kindness of God through His Spirit that I have neglected to pray about many of the more recent decisions regarding Judah's health and dr. follow ups. I have simply filled every prescription written, made every appointment recommended for follow up, and acquired every referral deemed necessary by his doctors. This leaves me feeling like a hampster in an exercise ball, unnecessarily running like crazy without getting very far.
My intention is never to withhold the medical care needed for Judah's well being. I just want to be consulting the One who is Judah's Creator and Sustainer and find out from Him what doctor's appointments to make and keep, what prescriptions to fill and administer and what tests, procedures and new specialists to pursue.
Please pray that:
- Judah will have grown sufficiently enough to not require further follow up on the growth issue and that there will be no growth hormone deficiency.
- Judah will cooperate with the lengthy process of having the EEG electrodes placed all over his head and then fall asleep for the technician to get a good read from him.
- Judah's EEG will show no signs of SWS involvement in his brain.
- God will give us wisdom to know what oral surgeon to choose for Judah's care.
- We will grow not only in consulting God first regarding Judah's care but also in confidence of what we hear from God and that He will provide all that we need for Judah to receive the best of care.
Thank you for your specific, persistent prayers on our behalf.
Monday, October 16, 2006
Our Mission Field
Recently, I finished a book called, "God's Smuggler", a biography about Brother Andrew and the work he did in smuggling Bibles into Communist countries. I moved on from that book to "Tramp for the Lord", the continuing story of Corrie Ten Boom after she was released from the concentration camp about which "The Hiding Place" was written.
The accounts of these two lives has reminded me of days not so long ago when I not only drempt about but strongly felt God calling me into the mission field. I did take what I saw as the beginning steps toward a life serving full time in missions by working with Campus Crusade for Christ for two years at Towson University. I assumed that eventually I might find myself overseas, specifically China, living out a single life devoted to spreading the gospel, giving up whatever was necessary including my dream of marriage and motherhood, in order to serve eternal purposes. I was sure my life would resemble that of Gladys Alward or Amy Carmichael. However, as I'm finding to be the case more often than not, God had different plans than I once assumed.
Those plans included me leaving my position with Campus Crusade for Christ, planting myself in a local church, marrying and having children, among other things. This husband of mine surprised me on Friday by coming home mid-day to accompany me to Judah's laser treatment. On our car ride down to Hopkins, Lawrence and I began talking about some things, and among those things was church planting. When Lawrence and I were first married, church planting was often a topic of discussion between the two of us. I think back then, I viewed church planting as the avenue God would use to re-direct all the dreams I had as a single for speading the gospel as a missionary. However, when the boys were born and we began to understand all that Judah's syndrome may entail and require from us, I unconsciously removed us from the church planter's list. Inadvertantly, I also began to let go of those dreams of being used for the eternal purposes of spreading the gospel through any mission field.
While conversing with my husband on our trip to Hopkins on Friday, I began to articulate some of these sentiments to him. My husband, along with the Holy Spirit's help, graciously pointed out to me that God has not removed me from a mission field; He's just given me one that I did not ask for or necessarily view as the mission field for me. The hospital, doctors, sick people, the suffering: NOT what or who I envisioned to be my mission field. But, on this trip to Hopkins, the words from this worship song rang in my heart and brought tears to my eyes as I began to allow the Lord to change my visions and dreams for being used by Him in, of all places, a hospital clinic.
Your glorious cause, O God, engages our hearts
May Jesus Christ be known wherever we are
We ask not for ourselves but for Your renown
The cross has saved us so we pray
Your kingdom come
Let your kingdom come
Let your will be done
So that everyone might know Your name
Let Your song be heard everywhere on earth
Till Your Sovereign work on earth is done
Let Your kingdom come
Give us Your strength, O God, and courage to speak
Perform Your wondrous deeds
Through those who are weak
Lord use us as You want, whatever the test
By grace we'll preach Your gospel
Till our dying breath.
(Bob Kauflin, 2006
Sovereign Grace Praise (BMI)
I'm not sure why I ever felt equipped or able to handle a foreign mission field other than a really bad combination of ignorance and pride. But, to respond to what appears to be an actual call to unsaved doctors, patients, parents of sick children can at times overwhelm me. I do feel so inadequate to be light in this darkness, the one who speaks a timely word of encouragement or sings songs of praise to Judah's Creator when his body does not function normally. But, here is a good a place to be, the place of desperation, the place where only if Christ's power rests on me will there be any fruit, the place where I can truly be used of Him for eternal purposes.
What a glorious cause, O Lord!
As for the specifics of Judah's treatment: apart from screaming bloody murder as soon as we walked down the hallway toward the laser room and all throughout the treatment, Judah did remarkably well with this treatment. He allowed me to apply the numbing cream to his face without throwing too much of a fit, and he did not bruise or blister at all this time. I was so grateful for that.
I will not stop saying thank you to all of you who pray because I know your prayers are availing much on our behalf: not just Judah's physical good, but our spiritual well being as well. We are ever grateful for the good work God is accomplishing in our lives through Judah's SWS, and we are confident that much of it is accomplished through your prayers!
The accounts of these two lives has reminded me of days not so long ago when I not only drempt about but strongly felt God calling me into the mission field. I did take what I saw as the beginning steps toward a life serving full time in missions by working with Campus Crusade for Christ for two years at Towson University. I assumed that eventually I might find myself overseas, specifically China, living out a single life devoted to spreading the gospel, giving up whatever was necessary including my dream of marriage and motherhood, in order to serve eternal purposes. I was sure my life would resemble that of Gladys Alward or Amy Carmichael. However, as I'm finding to be the case more often than not, God had different plans than I once assumed.
Those plans included me leaving my position with Campus Crusade for Christ, planting myself in a local church, marrying and having children, among other things. This husband of mine surprised me on Friday by coming home mid-day to accompany me to Judah's laser treatment. On our car ride down to Hopkins, Lawrence and I began talking about some things, and among those things was church planting. When Lawrence and I were first married, church planting was often a topic of discussion between the two of us. I think back then, I viewed church planting as the avenue God would use to re-direct all the dreams I had as a single for speading the gospel as a missionary. However, when the boys were born and we began to understand all that Judah's syndrome may entail and require from us, I unconsciously removed us from the church planter's list. Inadvertantly, I also began to let go of those dreams of being used for the eternal purposes of spreading the gospel through any mission field.
While conversing with my husband on our trip to Hopkins on Friday, I began to articulate some of these sentiments to him. My husband, along with the Holy Spirit's help, graciously pointed out to me that God has not removed me from a mission field; He's just given me one that I did not ask for or necessarily view as the mission field for me. The hospital, doctors, sick people, the suffering: NOT what or who I envisioned to be my mission field. But, on this trip to Hopkins, the words from this worship song rang in my heart and brought tears to my eyes as I began to allow the Lord to change my visions and dreams for being used by Him in, of all places, a hospital clinic.
Your glorious cause, O God, engages our hearts
May Jesus Christ be known wherever we are
We ask not for ourselves but for Your renown
The cross has saved us so we pray
Your kingdom come
Let your kingdom come
Let your will be done
So that everyone might know Your name
Let Your song be heard everywhere on earth
Till Your Sovereign work on earth is done
Let Your kingdom come
Give us Your strength, O God, and courage to speak
Perform Your wondrous deeds
Through those who are weak
Lord use us as You want, whatever the test
By grace we'll preach Your gospel
Till our dying breath.
(Bob Kauflin, 2006
Sovereign Grace Praise (BMI)
I'm not sure why I ever felt equipped or able to handle a foreign mission field other than a really bad combination of ignorance and pride. But, to respond to what appears to be an actual call to unsaved doctors, patients, parents of sick children can at times overwhelm me. I do feel so inadequate to be light in this darkness, the one who speaks a timely word of encouragement or sings songs of praise to Judah's Creator when his body does not function normally. But, here is a good a place to be, the place of desperation, the place where only if Christ's power rests on me will there be any fruit, the place where I can truly be used of Him for eternal purposes.
What a glorious cause, O Lord!
As for the specifics of Judah's treatment: apart from screaming bloody murder as soon as we walked down the hallway toward the laser room and all throughout the treatment, Judah did remarkably well with this treatment. He allowed me to apply the numbing cream to his face without throwing too much of a fit, and he did not bruise or blister at all this time. I was so grateful for that.
I will not stop saying thank you to all of you who pray because I know your prayers are availing much on our behalf: not just Judah's physical good, but our spiritual well being as well. We are ever grateful for the good work God is accomplishing in our lives through Judah's SWS, and we are confident that much of it is accomplished through your prayers!
Monday, October 09, 2006
Laser Treatment
I've had so many thoughts for a post here in the last couple of weeks, many prompted by the sufferings of others, some who are so dear to my heart, some of whom I don't even know. But, mothering toddler twin boys and being pregnant with our third has sapped me of the brain cells required to put together a thoughtful, encouraging post.
So, instead, I'm writing again, after a couple weeks hiatus, to let ya'll know about an upcoming appointment. Judah is scheduled to have a laser treatment this Friday. We have not done a laser treatment for several months, and I am tempted to be rather anxious about it. At best, I am not looking forward to it at all.
Please pray:
So, instead, I'm writing again, after a couple weeks hiatus, to let ya'll know about an upcoming appointment. Judah is scheduled to have a laser treatment this Friday. We have not done a laser treatment for several months, and I am tempted to be rather anxious about it. At best, I am not looking forward to it at all.
Please pray:
- Tucker will sleep well for his sitter and be pleasant and obedient to her when he wakes up. He is staying with a friend who has two boys of her own under 3 and a newborn baby girl.
- Judah will allow us to apply the numbing cream to his face without too much fuss or thrashing about.
- Judah will fall asleep and have a little bit of a nap before he goes for his treatment.
- The laser treatment would go quickly and smoothly, and be effective while leaving minimal bruising/blisters.
- All insurance matters would be squared away before Friday.
Thanks for continuing on with us in this journey through your prayers.
Saturday, October 07, 2006
Tagged
There have been so many other things I've wanted to post lately, but as this does not require many brain cells, I decided to go ahead and do it. Plus, I've enjoyed reading others so much that I had to add to the fun!
FIRST NAME: Briana, which means "strong"(willed, odor, character? The jury is still out).
WERE YOU NAMED AFTER ANYONE? No
YOUR FAVORITE LUNCHMEAT? I don't really care for lunchmeat, but pinned to the wall: turkey.
DO YOU HAVE A JOURNAL? Yes. The last time I wrote in it? ???
YOUR FAVORITE CEREAL? I'm with Kate on this one as I LOVE breakfast cereals. Currently, I'm eating Frosted Mini Wheats. Did you know they have 90% of one's daily values for Iron?
YOUR FAVORITE ICE CREAM FLAVOR? Depends on my mood.
RED OR PINK? pink
YOUR LEAST FAVORITE THING ABOUT YOURSELF? outward: my sagging bum and thigh cheese. Inward: my tendency to complain, be critical and angry, especially with my spouse.
WHAT COLOR PANTS AND SHOES ARE YOU WEARING? jeans and pink top with a zipped up sweater. It's cold today!
IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Have no clue, but I'll say sage for my earthy side.
FAVORITE SMELL? my boys' breaths after they wake up from their naps. Strange but true.
FAVORITE DRINK? again, depends on my mood...am I moody or what? hot herbal teas, particularly ginger peach or peppermint, hot choc. w/ lots of marshmallows, diet coke, and a good lager beer believe it or not. Typically, though, I just drink water.
HAT SIZE? who knows, but I do like wearing hats.
FAVORITE FOOD? Anything someone else makes. Recently, I've been enjoying baked oatmeal, apple dumplings and grilled peanut butter and jelly (not all at one sitting).
SUMMER OR WINTER? fall
FAVORITE SOUNDS? my boys' little toddler voices and giggles. And, the sound of the front door opening at the end of the day indicating my husband is home.
THE FURTHEST YOU’VE BEEN FROM HOME? China
WHAT’S YOUR SPECIAL TALENT? Perhaps a flare for drama!
WHEN AND WHERE WERE YOU BORN? October 15th, Allentown, Pennsylvania.
FIRST NAME: Briana, which means "strong"(willed, odor, character? The jury is still out).
WERE YOU NAMED AFTER ANYONE? No
YOUR FAVORITE LUNCHMEAT? I don't really care for lunchmeat, but pinned to the wall: turkey.
DO YOU HAVE A JOURNAL? Yes. The last time I wrote in it? ???
YOUR FAVORITE CEREAL? I'm with Kate on this one as I LOVE breakfast cereals. Currently, I'm eating Frosted Mini Wheats. Did you know they have 90% of one's daily values for Iron?
YOUR FAVORITE ICE CREAM FLAVOR? Depends on my mood.
RED OR PINK? pink
YOUR LEAST FAVORITE THING ABOUT YOURSELF? outward: my sagging bum and thigh cheese. Inward: my tendency to complain, be critical and angry, especially with my spouse.
WHAT COLOR PANTS AND SHOES ARE YOU WEARING? jeans and pink top with a zipped up sweater. It's cold today!
IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Have no clue, but I'll say sage for my earthy side.
FAVORITE SMELL? my boys' breaths after they wake up from their naps. Strange but true.
FAVORITE DRINK? again, depends on my mood...am I moody or what? hot herbal teas, particularly ginger peach or peppermint, hot choc. w/ lots of marshmallows, diet coke, and a good lager beer believe it or not. Typically, though, I just drink water.
HAT SIZE? who knows, but I do like wearing hats.
FAVORITE FOOD? Anything someone else makes. Recently, I've been enjoying baked oatmeal, apple dumplings and grilled peanut butter and jelly (not all at one sitting).
SUMMER OR WINTER? fall
FAVORITE SOUNDS? my boys' little toddler voices and giggles. And, the sound of the front door opening at the end of the day indicating my husband is home.
THE FURTHEST YOU’VE BEEN FROM HOME? China
WHAT’S YOUR SPECIAL TALENT? Perhaps a flare for drama!
WHEN AND WHERE WERE YOU BORN? October 15th, Allentown, Pennsylvania.
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