Well we tried to do the cranial sacral therapy (CST) but it didn't go too well. Isaac was pretty uncomfortable being in another new office and just wouldn't calm down. The therapist was awesome though - she said there is no rush to get him going on this and making sure he's comfortable is the most important. We stayed and chatted for about 20 minutes and then left.
We still can't get his pediatrician to write a referral for it but we're going to proceed and pay for it anyway. I'm going to keep working on it. I think it's a whole Eastern vs. Western medicine thing.
Can't believe the holidays are already upon us. Lyndon's folks are down this weekend and I'm making an early Thanksgiving tonight. Next week we are going to my cousins for the holiday and then spending the weekend in Portland. Excited about that and it's been years since we've been down there. Then....Poof....it's December. Yowzers!
Saturday, November 21, 2009
Friday, November 13, 2009
What to do what to do
My mom was on her commute home over a week ago and was chitchatting with a guy whose nephew had a tumor in his neck and when it was removed, had nerve damage to his face. He went to a nerve and paralysis center in Houston and had a surgery performed that helped the damage.
Ever since that conversation, I've been investigating more and more the options we have as far as Isaac's face is concerned. See the ENT we saw at Mary Bridge said just give it a year and then you'll have what you have. However, it's so hard to just sit back and see what's going to happen. Since then, I've spoken with the craniofacial program at Children's Hospital in Seattle as well as the doctor in Houston who does nerve surgeries. We see the doctors at Children's on December 11th. What I learned from the doctor in Houston is so so interesting so I'll try to explain it as best as I can. I believe that the craniofacial program in Seattle will have similar suggestions.
He said that what he would recommend for Isaac would be to have a surgery where he would cut just in front of his ear (like a plastic surgery cut) and would go in, first would shock the nerve with like 1200 amps (I believe that's the number he used) and if his face twitches, then they would know that the movement should come back. However, if there was no movement, they would proceed to take his facial nerve and reroute it/connect it to nerve #5 which is the nerve that allows you to chew, moves your jaw up and down. The result of this surgery would be that Isaac could move his jaw in a certain way and it would enable that side of his face to smile. It would basically move that muscle for him.
The paralysis can be seen pretty drastically in a few areas of his face. He can't crinkle his forehead, his can't close his eye, he can scrunch up his nose and he can't smile. So basically he has lost the animation in that side of his face.
If we don't go for this surgery (which should be done in the next few months before the muscles in Isaac's face just die) then there is another option which would be to wait and see for a couple of years. Then if he doesn't regain the movement, they could perform a surgery that would take muscle from one of his legs, put it in his face and then do some reanimation/nerve moving. So that is how I understand it.
It's not purely cosmetic - it's also because his facial droop will affect his speech, his eating, etc.
As far as his eye is concerned, this is another huge worry because he is at risk for scratching his cornea as his eye doesn't get the tears and remains a little open (even when he sleeps) at all times. Right now we are putting drops in his eye every two hours and at night a gel (which he hates) but there's an option of putting a weight in his eye which will allow it to close and he can learn how to manage that as he grows up. I'm not sure when they would want to do such a surgery - at what age would be best, etc.
This is just some of the stuff going on in our household these days. Making lots of calls, trying to get all the information we can. I will be needing to take more time off from work in order to make these appointments. I will absolutely fly to Houston if needed but am hoping the same thing can be done in Seattle.
It's been really difficult to get Isaac's pediatrician to be open to discussing these options. I'm honestly so shocked that none of the providers we've seen have pointed us in this direction - it's had to be on our own initiative. I've requested another referral for some "energy work" called craniosacral therapy which my massage therapist thinks could be very helpful but have been turned down for that. Maybe because it's not medicinal? I think we'll be going ahead with it anyway - just because I want to try everything possible to get my son whatever care would be helpful. Here is the official description of what craniosacral therapy is:
A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system.[1] The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.[2][3][4] Several studies have reported that there is little scientific support for major elements of the underlying theoretical model, which has not been rigorously analyzed.[5]
I figure it's worth a try!
Ever since that conversation, I've been investigating more and more the options we have as far as Isaac's face is concerned. See the ENT we saw at Mary Bridge said just give it a year and then you'll have what you have. However, it's so hard to just sit back and see what's going to happen. Since then, I've spoken with the craniofacial program at Children's Hospital in Seattle as well as the doctor in Houston who does nerve surgeries. We see the doctors at Children's on December 11th. What I learned from the doctor in Houston is so so interesting so I'll try to explain it as best as I can. I believe that the craniofacial program in Seattle will have similar suggestions.
He said that what he would recommend for Isaac would be to have a surgery where he would cut just in front of his ear (like a plastic surgery cut) and would go in, first would shock the nerve with like 1200 amps (I believe that's the number he used) and if his face twitches, then they would know that the movement should come back. However, if there was no movement, they would proceed to take his facial nerve and reroute it/connect it to nerve #5 which is the nerve that allows you to chew, moves your jaw up and down. The result of this surgery would be that Isaac could move his jaw in a certain way and it would enable that side of his face to smile. It would basically move that muscle for him.
The paralysis can be seen pretty drastically in a few areas of his face. He can't crinkle his forehead, his can't close his eye, he can scrunch up his nose and he can't smile. So basically he has lost the animation in that side of his face.
If we don't go for this surgery (which should be done in the next few months before the muscles in Isaac's face just die) then there is another option which would be to wait and see for a couple of years. Then if he doesn't regain the movement, they could perform a surgery that would take muscle from one of his legs, put it in his face and then do some reanimation/nerve moving. So that is how I understand it.
It's not purely cosmetic - it's also because his facial droop will affect his speech, his eating, etc.
As far as his eye is concerned, this is another huge worry because he is at risk for scratching his cornea as his eye doesn't get the tears and remains a little open (even when he sleeps) at all times. Right now we are putting drops in his eye every two hours and at night a gel (which he hates) but there's an option of putting a weight in his eye which will allow it to close and he can learn how to manage that as he grows up. I'm not sure when they would want to do such a surgery - at what age would be best, etc.
This is just some of the stuff going on in our household these days. Making lots of calls, trying to get all the information we can. I will be needing to take more time off from work in order to make these appointments. I will absolutely fly to Houston if needed but am hoping the same thing can be done in Seattle.
It's been really difficult to get Isaac's pediatrician to be open to discussing these options. I'm honestly so shocked that none of the providers we've seen have pointed us in this direction - it's had to be on our own initiative. I've requested another referral for some "energy work" called craniosacral therapy which my massage therapist thinks could be very helpful but have been turned down for that. Maybe because it's not medicinal? I think we'll be going ahead with it anyway - just because I want to try everything possible to get my son whatever care would be helpful. Here is the official description of what craniosacral therapy is:
A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system.[1] The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.[2][3][4] Several studies have reported that there is little scientific support for major elements of the underlying theoretical model, which has not been rigorously analyzed.[5]
I figure it's worth a try!
Thursday, November 12, 2009
A lot to report
I really have so much to say and so much to report...I simply don't have the time lately so please stay tuned.
Sunday, November 1, 2009
Halloween Pics
Just a few from Halloween. We had a pretty mellow night - took the kids out with our friends Shaun and Cliff and their son Caden. Sydney was supergirl, Isaac was Woody and Caden was a ninja. They scored some major loot. Now if I can just stay away from it.....
Monday, October 26, 2009
They Stare
OK, it's starting to wear on me. People who stare at Isaac...trying to figure out what's wrong. I know I've done it to others just out of curiosity but now I'm on the receiving end. I want to walk up to them and just tell them what happened. So they can stop staring. But that would take a lot of time and be emotionally draining so I try to ignore it. But it gets to me. So I'm saying it to you all (just to get it off my chest)... Please don't stare at my little boy!
Saturday, October 24, 2009
Happy Birthday Lyndon
Happy 34th Birthday Lyndon!
We spent a nice evening with some friends from Olympia. Some had to cancel as the flu and bug is running rampant around here but we still had a nice time. Oddly enough, yesterday was the one year anniversary of us being back in Washington. On Lyndon's Birthday last year, we woke up in Montanta, had cupcakes in Idaho and made it to my parents by the evening. We are still so happy about being back!
Tuesday, October 13, 2009
Countdown
In two more days, I go back to work full time and Isaac goes back to daycare full time. It's overwhelming to think about. Lately, I've been so anxious when it comes to anything and everything Isaac. Like when I talk about him to friends, I feel my blood pressure rise, I talk faster, I stumble on my words because I just can't get over the fears I have yet. Maybe it's to be expected - almost like post traumatic stress but it's not a great feeling. Having the reduced hours has been great - it means that Isaac is only at daycare for about three hours before he naps and shortly after he wakes up from nap, I pick him up. Now he will be dropped off at 7 a.m. - he naps at 12:30 p.m. so that's a long stretch of play. Anyway, it's going to be like bringing him for the first time again for me I think...
Isaac had three falls last week. First he fell off a stool at my mom's house - right onto his head. We were freaked. We called the pediatrician and once we finally spoke with our doctor, were told that he would be telling us exactly what he would tell any parent of a "normal" two year old. Because Isaac's fractures were most likely healed by now. Later in the week he took a tumble down our stairs and bonked his head and on Friday he fell out of a chair at daycare...onto his head. Maybe this has helped contribute to my increased anxiousness lately. Anyhow, I finally called his pediatrician in a panic on Friday. I want another CT scan - I want to know that his fractures have healed - that falling on his head hasn't re-injured anything, etc. He said no. He doesn't feel he needs one because there are no signs that there have been any damage. To the brain or the skull. Again, he feels he's a normal two year old. So hard to grasp....even now.
Isaac had three falls last week. First he fell off a stool at my mom's house - right onto his head. We were freaked. We called the pediatrician and once we finally spoke with our doctor, were told that he would be telling us exactly what he would tell any parent of a "normal" two year old. Because Isaac's fractures were most likely healed by now. Later in the week he took a tumble down our stairs and bonked his head and on Friday he fell out of a chair at daycare...onto his head. Maybe this has helped contribute to my increased anxiousness lately. Anyhow, I finally called his pediatrician in a panic on Friday. I want another CT scan - I want to know that his fractures have healed - that falling on his head hasn't re-injured anything, etc. He said no. He doesn't feel he needs one because there are no signs that there have been any damage. To the brain or the skull. Again, he feels he's a normal two year old. So hard to grasp....even now.
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