It's easy to be discouraged lately. To not fix my eyes on Christ but rather on my surroundings.
In December Peter was put on ACTH (like a steroid) which lasted 10 weeks before he was totally off it - in an attempt to stop his infantile spasms. This works for lots of kids, but wasn't much permanent help for him. Instead we got 2 months of a sad and miserable Peter who was hungry all the time and did not sleep well. His spasms (which are like seizures) improved while on the ACTH, but now that he's totally off it, they are almost as they were before we started treatment.
He's been on 2 anti-epileptic drugs, which did nothing for the spasms, although one of them seemed to stop his other (longer) seizures from occurring. Since then we have received results from a gene testing panel that was sent off in December, and the one gene that showed a problem was one that causes a person to have glucose transporter deficiency (glut-1 for short). This means that the protein that transports glucose into the brain is not functioning properly, so the brain does not get the energy it needs.
The one and only real treatment for this is to put the person on the ketogenic diet, or some form of it, so that the body burns fat instead of carbs (glucose) for energy. The resulting ketones in the blood can then be used by the brain for energy.
We do thank God very much for granting us this diagnosis so early in Peter's life, as many kids are not diagnosed till years later, after the time when the brain most needs its energy for growth.
So Peter has started this ketogenic diet. It's mostly fat (oil and a special formula). However, he wasn't drinking the volume of fluids recommended when having this diet, so he has ended up with a stomach feeding tube (g-tube). Theoretically he can still take things by mouth, but I don't think he likes the taste of what he's eating, so lately he won't take anything by mouth. Which is frustrating to me, since he needs the oral stimulation of eating and nursing to help his future speech development. And, I haven't seen much if any benefit from the diet yet, which is also discouraging. For some kids it takes longer to work, apparently. It just makes me wonder if this is really the thing to do. But we really don't have any other option.
Also his vision is pretty bad. Probably they would call it CVI (cortical visual impairment), which basically means the brain is not interpreting what his eyes see correctly. Possibly he also has optic nerve problems, which would make the issue worse. We know he can see light and bold patterns, but he doesn't respond well visually to the world in general.
At least he is generally happy now (a wonderful change from his first 8-9 months), and opens his eyes a little more than he used to. And he does smile some. I'm thankful for those things.
It's easy to forget that in my trials, the Lord is yet "compassionate and merciful."
"Indeed we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord—that the Lord is very compassionate and merciful." (James 5:11)
O to remember that. And that heaven is not far away.
Tuesday, March 6, 2012
Friday, December 30, 2011
Jesus' love
how do you love someone
who gives you nothing in return?
rarely smiles
never laughs
has nothing to offer you?
how do you give and give and give
without growing weary?
I guess that's what Jesus did
for me...
remembering that
I can love out of love for Him
who gives you nothing in return?
rarely smiles
never laughs
has nothing to offer you?
how do you give and give and give
without growing weary?
I guess that's what Jesus did
for me...
remembering that
I can love out of love for Him
jars of clay
back to real life
Christmas can't last forever
a break has been nice
but the weary days must return
I'm feeling like "jars of clay"
need to trust God for His strength
the excellence of the power is His and not mine
may I lift my eyes
lean on Him
focus on His beauty
may His power be perfected
in my weakness
Christmas can't last forever
a break has been nice
but the weary days must return
I'm feeling like "jars of clay"
need to trust God for His strength
the excellence of the power is His and not mine
may I lift my eyes
lean on Him
focus on His beauty
may His power be perfected
in my weakness
Friday, December 23, 2011
lessons from Dr. Mikati
Dr. Mohamad Abdul Mikati is Peter's neurologist now.
When I emailed his secretary to say that another doctor had thought Peter had infantile spasms, and that I wanted to know if he could be seen sooner than his scheduled visit, Dr. Mikati had the secretary call the next day to say he would see us in a week (instead of in a month). Here we are, total strangers. He's taking my word for it that someone said my child had this problem. He hasn't seen the EEG's or anything. And he overbooks his schedule, seeing us probably over his lunch hour, in order to get Peter in sooner. It just amazes me.
And then, having done his own diagnosis, he starts Peter on treatment that requires him to come back every week or two for a checkup of how he is doing - so again, Dr. Mikati overbooks his own schedule to see Peter at times he normally doesn't see patients. Once it wasn't even his clinic day, but that was the day the EEG people could get him in, so Dr. M. came to see him anyway.
I couldn't deserve such a doctor, nor do anything to get him to care for us as he does. But he has a big heart for all his patients, apparently, and for those who show up needing help who are not already his patients. He cares. For strangers. And does it knowing he will now be taking responsibility for them as his patients, serving them often at a cost to himself.
It makes me not mind waiting for him at appointments (he usually runs late) because I know that he is probably taking time to see another patient and answer all their questions like he does with me. It makes me willing to gladly do whatever he says, because I trust him that if he is willing to sacrifice for my child, then he must truly care about him and have his good in mind.
... so the Lord made me think about Jesus. I could not deserve His caring for me, perhaps not a stranger to Him, but an enemy at least. He, at very great sacrifice to Himself, cared about me in my need. I could do nothing to get him to care for me, nothing to deserve it. I am just a needy sinner, and He has shown compassion on me. And He has done so, knowing that He would be taking responsibility for me as one of His own.
I should be completely willing to do gladly, whatever He says; to trust Him implicitly, because He sacrificed greatly for me. Therefore He must care for me and have my good in mind.
O that I would remember these things, and live them! To remember my thankfulness and undeservedness in regard to Dr. Mikati, and to therefore remember Jesus' greater love and care for me. And to trust Him completely in everything.
Thank you, Dr. Mikati, for teaching me about Jesus.
When I emailed his secretary to say that another doctor had thought Peter had infantile spasms, and that I wanted to know if he could be seen sooner than his scheduled visit, Dr. Mikati had the secretary call the next day to say he would see us in a week (instead of in a month). Here we are, total strangers. He's taking my word for it that someone said my child had this problem. He hasn't seen the EEG's or anything. And he overbooks his schedule, seeing us probably over his lunch hour, in order to get Peter in sooner. It just amazes me.
And then, having done his own diagnosis, he starts Peter on treatment that requires him to come back every week or two for a checkup of how he is doing - so again, Dr. Mikati overbooks his own schedule to see Peter at times he normally doesn't see patients. Once it wasn't even his clinic day, but that was the day the EEG people could get him in, so Dr. M. came to see him anyway.
I couldn't deserve such a doctor, nor do anything to get him to care for us as he does. But he has a big heart for all his patients, apparently, and for those who show up needing help who are not already his patients. He cares. For strangers. And does it knowing he will now be taking responsibility for them as his patients, serving them often at a cost to himself.
It makes me not mind waiting for him at appointments (he usually runs late) because I know that he is probably taking time to see another patient and answer all their questions like he does with me. It makes me willing to gladly do whatever he says, because I trust him that if he is willing to sacrifice for my child, then he must truly care about him and have his good in mind.
... so the Lord made me think about Jesus. I could not deserve His caring for me, perhaps not a stranger to Him, but an enemy at least. He, at very great sacrifice to Himself, cared about me in my need. I could do nothing to get him to care for me, nothing to deserve it. I am just a needy sinner, and He has shown compassion on me. And He has done so, knowing that He would be taking responsibility for me as one of His own.
I should be completely willing to do gladly, whatever He says; to trust Him implicitly, because He sacrificed greatly for me. Therefore He must care for me and have my good in mind.
O that I would remember these things, and live them! To remember my thankfulness and undeservedness in regard to Dr. Mikati, and to therefore remember Jesus' greater love and care for me. And to trust Him completely in everything.
Thank you, Dr. Mikati, for teaching me about Jesus.
Sunday, December 4, 2011
Peter update - Dec.4,2011
For those who don't follow me on Facebook, here's a brief update on Peter.
I was concerned that he might be having what is called "infantile spasms" and got an EEG done and a visit with a neurologist. After that we had another EEG (a longer one), followed by a switch to a different neurologist. This one got me in to see him 3 weeks before the scheduled appointment and then recommended we admit Peter to Duke Hospital (where this doctor works) for a "video EEG" (they videotape while they have him hooked up to an EEG machine) so that they could see what he was doing at the time when he was having the suspected spasms, and coordinate that with what the EEG showed his brain doing. And while we were there, they could run a bunch more tests on Peter to see if they could find out what caused the spasms (or rule out things that didn't). So we did that last week, and they did diagnose him as having infantile spasms, and started him on a potent drug called Acthar (ACTH). The only form this comes in is administered by intramuscular injection - i.e., I have to give him a shot in his thigh twice a day for 2 weeks or so, followed by once a day for a few weeks to taper the drug off. We are praying that this would indeed stop the spasms for good and also not cause some of the possible horrible side effects that can result. Please pray with us for these things.
Peter has gotten delayed in his development and is probably closer to a 2-3 month old in development, though he's over 7 months old in age. This may be due in large part to infantile spasms, as they are associated with developmental delay. We are praying that Peter will be able to develop better after this treatment, if indeed it can stop the spasms.
I was concerned that he might be having what is called "infantile spasms" and got an EEG done and a visit with a neurologist. After that we had another EEG (a longer one), followed by a switch to a different neurologist. This one got me in to see him 3 weeks before the scheduled appointment and then recommended we admit Peter to Duke Hospital (where this doctor works) for a "video EEG" (they videotape while they have him hooked up to an EEG machine) so that they could see what he was doing at the time when he was having the suspected spasms, and coordinate that with what the EEG showed his brain doing. And while we were there, they could run a bunch more tests on Peter to see if they could find out what caused the spasms (or rule out things that didn't). So we did that last week, and they did diagnose him as having infantile spasms, and started him on a potent drug called Acthar (ACTH). The only form this comes in is administered by intramuscular injection - i.e., I have to give him a shot in his thigh twice a day for 2 weeks or so, followed by once a day for a few weeks to taper the drug off. We are praying that this would indeed stop the spasms for good and also not cause some of the possible horrible side effects that can result. Please pray with us for these things.
Peter has gotten delayed in his development and is probably closer to a 2-3 month old in development, though he's over 7 months old in age. This may be due in large part to infantile spasms, as they are associated with developmental delay. We are praying that Peter will be able to develop better after this treatment, if indeed it can stop the spasms.
when love demands the infliction of pain
I don't think I'll ever get used to giving my child shots of medicine into his thigh. More proficient, yes - happy doing it, no. Perhaps that is as it should be. It should not be pleasant to inflict pain on one whom you love. Yet there are times when love demands the infliction of pain, because there is no other way to gain the most good for the one loved. It is hard to do the unpleasant, to make your child cry out in pain. By God's grace we do it faithfully - and then comfort our son's tears.
Why then do I not trust my perfect Father in all His dealings with me? In His perfect wisdom, He knows what will be for my best good. And sometimes the only way to effect that good is through pain. So He inflicts it out of love, yet perhaps it pains Him to inflict pain, the same way I am never happy to cause my own child pain. And then He comforts the tears that He causes in us. Surely He doesn't cause us needless pain, needless tears. What parent would delight to needlessly hurt their child? Surely God is the perfect Father. I pray that I will trust Him when He causes me pain - that I will remember what it feels like to grieve that I must cause pain, and at the same time to know that there is no other way, and that love demands it.
Why then do I not trust my perfect Father in all His dealings with me? In His perfect wisdom, He knows what will be for my best good. And sometimes the only way to effect that good is through pain. So He inflicts it out of love, yet perhaps it pains Him to inflict pain, the same way I am never happy to cause my own child pain. And then He comforts the tears that He causes in us. Surely He doesn't cause us needless pain, needless tears. What parent would delight to needlessly hurt their child? Surely God is the perfect Father. I pray that I will trust Him when He causes me pain - that I will remember what it feels like to grieve that I must cause pain, and at the same time to know that there is no other way, and that love demands it.
Thursday, October 6, 2011
steadfast love surrounding
"...steadfast love surrounds the one who trusts in the LORD.
Be glad in the LORD, and rejoice, O righteous, and shout for joy, all you upright in heart!"
(Ps.32:10b-11).
No matter what my circumstances, Jehovah's love surrounds me. Whatever is going "wrong" as I see it, still God is the same and has not changed. His love has not changed. His plans, His wisdom, remain unmoved, and He has promised that they are for good for those He loves.
If I would believe that practically, not just in my head, there would be less worrying, more peace. I fret that my son might never fully develop and mature; but God's plans are higher, and His design is not just for the physical things, but for my heart (and Peter's I hope) to know Him. To be near Him. To know more of Him and hold Him more dearly.
O to realize in each moment, that this life is not "Life" but rather the training ground for it! That God is the one great goal of my life, and whatever leads me closer to Him, is good. To focus less on success and results in my endeavors, and more on gladly serving my King in whatever assignment He gives me today.
"Our life is not the way we plot it or plan it. And so I guess all along I've just accepted whatever assignment the Lord gave me. This was his assignment... The greatest problem is unrealistic expectations. We naturally want to hold our loved ones to what they were... instead of accepting them for what they are. ... So I say, in acceptance there's peace. Accept them as they are. Don't try to change them or hold them back to what they used to be." (From an article about a man's care of his wife who had Alzheimer's.)
Be glad in the LORD, and rejoice, O righteous, and shout for joy, all you upright in heart!"
(Ps.32:10b-11).
No matter what my circumstances, Jehovah's love surrounds me. Whatever is going "wrong" as I see it, still God is the same and has not changed. His love has not changed. His plans, His wisdom, remain unmoved, and He has promised that they are for good for those He loves.
If I would believe that practically, not just in my head, there would be less worrying, more peace. I fret that my son might never fully develop and mature; but God's plans are higher, and His design is not just for the physical things, but for my heart (and Peter's I hope) to know Him. To be near Him. To know more of Him and hold Him more dearly.
O to realize in each moment, that this life is not "Life" but rather the training ground for it! That God is the one great goal of my life, and whatever leads me closer to Him, is good. To focus less on success and results in my endeavors, and more on gladly serving my King in whatever assignment He gives me today.
"Our life is not the way we plot it or plan it. And so I guess all along I've just accepted whatever assignment the Lord gave me. This was his assignment... The greatest problem is unrealistic expectations. We naturally want to hold our loved ones to what they were... instead of accepting them for what they are. ... So I say, in acceptance there's peace. Accept them as they are. Don't try to change them or hold them back to what they used to be." (From an article about a man's care of his wife who had Alzheimer's.)
I need to have that attitude too: accepting whatever assignment God gives me today, and gladly (don't I keep telling my kids they need to "obey sweetly"?). And accepting of whatever Peter is, while both pushing him to develop as much as possible and at the same time not being frustrated that he is not what other babies are.
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