April showers today. So many in fact that I didn't go to work. But that was another kind providence, as it enabled me to go with Sharon to Jacob's appointment with the neurologist today. Our girls stayed with the Gatchell's, some friends from church who have 3 older boys, 2 girls aged right around our girls and a boy 2 months older than Philip.
We appreciated the doctor--evidently the current trend is less formality, as he just goes by "Matt." He ran through lots of exercise-type tests with Jacob as observations. He is convinced there are no neurological problems, which is what we expected. However, there is definitely something chronic going on with his muscles. The enzyme numbers I referred to in the previous post refer to an enzyme found in everyone which serves to break down muscle in the muscle development and replacement process. Elevated levels might be found in someone who has been working out in the gym, but Jacob's level is about 100 times the upper normal level.
What we have learned today is that more tests are needed. We are not yet aware of where God is about to take us, but the horizon looks stormy. We need to take him to the cardiologist to make sure that (since the heart is a muscle) his heart is strong. We also need to go for more bloodwork to see what that can show us. Depending upon those results, a next step would be to go to York Hospital for genetic testing to narrow down the underlying causes. The term "muscular dystrophy" has come up several times in these last days, but the doctor told us today that even if his problem were to be in this category, there are many differnt flavors this disorder can take.
So we are still left waiting. We are so glad that God has known about this since before time began. Though taking him for his 6 year old well checkup has quickly turned into a new phase in our lives, he remains the little boy we have loved for 6 years. We haven't seen any deterioration or regression in him, and so for now everything is the same as it was 2 weeks ago other than our growing awareness of future consequences of this condition.
For years I have wondered that we had both lived so long without going through any really deep waters, and had been thinking that sooner or later something would surely be brought our way. We are receiving this from God's hand, from the same God of whom Job spoke, "Shall we receive good from God, and shall we not receive evil?" And we are praying that we would look expectantly to see how God will sanctify this trial to us as parents and to our family. Each of our children need to seek the Lord, and we know this will be used of God for good. Please continue to pray with us for clear thinking and daily grace.
Monday, April 20, 2009
Thursday, April 16, 2009
No pictures, just news
I'm not so good at reading my own blogs, which means that sometimes I leave everyone hanging. Last time I mentioned Philip's doctor appointment. His visit to the cardiologist went very well, other than the hour and a half trip to Gettysburg (for followup visits they said they have an office only 25 minutes away in Shrewsbury--wish we knew about that before this visit!). The doctor did an EKG and some other tests and said everything looks good so far. There is some constricting of an artery that leads to the lungs, but she said that is frequently found in babies who grow quickly (he has gone from 7 lb 7 oz to 11lb 8 oz in less than two months, praise God!).
But as we thank God for that good news, we have other matters in the works that leave us a bit concerned--not fretful, but thinking. Since Jacob was a baby, he has always been a bit slower to develop physically than other kids. He was always "floppy" as a baby, and even into toddlerhood and beyond has not had good muscle strength. We had him evaluated several times over the years and were told he had hypotonia, which is low muscle tone. He has continued to progress, although not at par with those his age. He can run now, but not normally; his hips look very loose when he runs. He can jump a little bit, but only get an inch or so off the floor. I think the hardest thing is watching him go up a flight of stairs. He still has to go one step at a time (both feet on one step before stepping up to the next), and often uses the handrail to help pull himself up.
We have been saddened at times to watch him fall a lot and not be able to keep up with his friends. And now, as younger children are able to run past him in the hall or on the steps, he is starting to realize that he is a little different. He can't keep up with Sarah Beth as they run through our yard. But he can pedal a bike quite well, and often takes initiative and drags the trash cans to the street. We have known he is behind, but have pushed him (healthfully, we believe) to do what he can do.
He just went for his 6 year appointmet. We had recently changed doctors because we found one much closer. But in God's good providence, we stumbled upon a very good doctor. Sharon liked her the first time she met her. She takes a real personal interest in the family and even remembers the siblings names. She had Jacob do various things to see his development level. She noticed that he still can't get up from sitting on the floor without pushing off the floor with his hands. She was very surprised that no one thus far had sent him for any kind of testing. (Others had sent him to orthopedic specialists for evaluation, but no tests have been done.) She feels the problem is more nerve/muscle than bone, which makes sense. We were sent for a blood test on Wednesday--he was very brave and didn't even cry. Today we got a personal call from the doctor that something unusual showed up in the results. There is a certain enzyme that is found in most people at levels between 30 and 200. Jacob's level was 22,000. We aren't sure quite what that means yet, but we are to take him to a neurologist on Monday.
It seems that most were saying hypotonia was a description of his problem, but it may be that hypotnia is only a symptom of something else. I mentioned to Sharon when she called me that I am grateful we have a biblical framework to put all this information in. We know Jacob was made exactly the way God wanted him to be made. We've heard others say before that God doesn't make mistakes, but now I am starting to appreciate that firsthand.
Please pray with us as we continue with the testing. Perhaps God will show us something we can do that will help him improve in his abilities. We just don't know much at this point other than he seems to be a pretty normal kid who is developing a little slower and a little more "imperfectly" than others. We continue to need wisdom to help push him to his limits and not beyond, and to help him develop a biblical way of thinking about how God has made him. We are glad at this point that he isn't in school, where his challenges no doubt would be played upon by other kids. That time may come, but for now he is still a (mostly) happy little 6 year old.
Thanks for reading and caring.
But as we thank God for that good news, we have other matters in the works that leave us a bit concerned--not fretful, but thinking. Since Jacob was a baby, he has always been a bit slower to develop physically than other kids. He was always "floppy" as a baby, and even into toddlerhood and beyond has not had good muscle strength. We had him evaluated several times over the years and were told he had hypotonia, which is low muscle tone. He has continued to progress, although not at par with those his age. He can run now, but not normally; his hips look very loose when he runs. He can jump a little bit, but only get an inch or so off the floor. I think the hardest thing is watching him go up a flight of stairs. He still has to go one step at a time (both feet on one step before stepping up to the next), and often uses the handrail to help pull himself up.
We have been saddened at times to watch him fall a lot and not be able to keep up with his friends. And now, as younger children are able to run past him in the hall or on the steps, he is starting to realize that he is a little different. He can't keep up with Sarah Beth as they run through our yard. But he can pedal a bike quite well, and often takes initiative and drags the trash cans to the street. We have known he is behind, but have pushed him (healthfully, we believe) to do what he can do.
He just went for his 6 year appointmet. We had recently changed doctors because we found one much closer. But in God's good providence, we stumbled upon a very good doctor. Sharon liked her the first time she met her. She takes a real personal interest in the family and even remembers the siblings names. She had Jacob do various things to see his development level. She noticed that he still can't get up from sitting on the floor without pushing off the floor with his hands. She was very surprised that no one thus far had sent him for any kind of testing. (Others had sent him to orthopedic specialists for evaluation, but no tests have been done.) She feels the problem is more nerve/muscle than bone, which makes sense. We were sent for a blood test on Wednesday--he was very brave and didn't even cry. Today we got a personal call from the doctor that something unusual showed up in the results. There is a certain enzyme that is found in most people at levels between 30 and 200. Jacob's level was 22,000. We aren't sure quite what that means yet, but we are to take him to a neurologist on Monday.
It seems that most were saying hypotonia was a description of his problem, but it may be that hypotnia is only a symptom of something else. I mentioned to Sharon when she called me that I am grateful we have a biblical framework to put all this information in. We know Jacob was made exactly the way God wanted him to be made. We've heard others say before that God doesn't make mistakes, but now I am starting to appreciate that firsthand.
Please pray with us as we continue with the testing. Perhaps God will show us something we can do that will help him improve in his abilities. We just don't know much at this point other than he seems to be a pretty normal kid who is developing a little slower and a little more "imperfectly" than others. We continue to need wisdom to help push him to his limits and not beyond, and to help him develop a biblical way of thinking about how God has made him. We are glad at this point that he isn't in school, where his challenges no doubt would be played upon by other kids. That time may come, but for now he is still a (mostly) happy little 6 year old.
Thanks for reading and caring.
Friday, April 10, 2009
The past few weeks
Spring is showing itself lately, and the kids are spending more time outside. While the daffodils are up, and the pears are blooming, we are still having some cold nights. Two days ago I went out about 5:45 to leave for work, and there was an inch of snow covering everything. Of course it was gone before noon, but it made for a pretty drive once the sun came up.
Spring time is digging in the dirt time again, and as I got our little planter bed ready for radishes and carrots, we found some worms, so our red wagon became a worm hotel. Notice that the girls have the worms, while Jacob didn't want to hold them for the picture (although he will hold them).
More kids mean less space, so taking a cue from Ikea, we are trying to use our vertical spaces. Now the bunkbeds that Lydia and Jacob have been using (and which Joshua and I used to use) have space for three. This will let Philip have his own room for now. (For those who may worry, there is a board that goes on the top bunk for Lydia and a removable closet rod that attaches to the middle bed for Jacob.)
Last Saturday Lydia and I went out for the evening. Lancaster Bible College was producing the play Little Women and I thought she would enjoy it, especially as it was a musical. She thanked me 3 times on the way home and told me of the million things we could have done that night, this was the best.
Spring time is digging in the dirt time again, and as I got our little planter bed ready for radishes and carrots, we found some worms, so our red wagon became a worm hotel. Notice that the girls have the worms, while Jacob didn't want to hold them for the picture (although he will hold them).
We are still waiting for the first official smile, but Philip is making some attempts. I don't think this counts as official, but it looks pretty close. He has a habit of crossing his eyes, which makes him look a little other-worldly, but most times his eyes are working together.
At his checkup this week, the doctor said she heard an irregularity in his heart which she thinks is just a slow development where the valves haven't totally closed yet, but she is sending us to a pediatric cardiologist next week to make sure.More kids mean less space, so taking a cue from Ikea, we are trying to use our vertical spaces. Now the bunkbeds that Lydia and Jacob have been using (and which Joshua and I used to use) have space for three. This will let Philip have his own room for now. (For those who may worry, there is a board that goes on the top bunk for Lydia and a removable closet rod that attaches to the middle bed for Jacob.)
Last Saturday Lydia and I went out for the evening. Lancaster Bible College was producing the play Little Women and I thought she would enjoy it, especially as it was a musical. She thanked me 3 times on the way home and told me of the million things we could have done that night, this was the best.
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