I'm guessing this is what all of the hullabaloo was about during that whole Obamacare thing ... but honestly, I'm really shocked at the poor quality of the care we have received overall due to the way the medical system has to be set up.
Short history: It seems that, until about 1970, your personal doctor was able to keep track of your medical history and suggest the best course of action. Then, insurance companies realized, "wait a minute!," the cost of health care is going to skyrocket - we have to do something about this!
Enter the beginnings of the crazy system we have now. From my personal experience, because insurance companies are looking to keep their costs low, and they really can't pay for everything because there is so much illness going on (let's just assume that together, rather than they're greedy bastards). Therefore, the quality of care everyone receives totally sucks.
Take our case for example, my daughter has a pretty straightforward skull deformity. It usually requires surgery. Last November, I started the process to have that surgery done. By January, I had arranged the consult necessary and gotten the "OK, I recommend surgery" from Dr. Fearon. Due to Dr. Fearon's demand, we were not able to schedule until the end of March. So that's a four month turn around time. Not too bad for a serious surgery. Or is it .... is a four month turn around time really a good idea for such a serious condition? I mean, I was basically told my daughter would suffer insanely serious consequences, and it's takes several months to schedule the surgery to correct that. Something is a little off there.
But, wait, there's more! (eat your heart out Ron Popeil) Now our insurance company gets involved. We used to be part of a PPO and didn't have to get regular referrals and authorization, which are different, you know. We switched to an HMO last year, and I didn't do enough homework to realize the ins and outs of how this whole thing works. So then, we had to find a new in-network pediatrician and in-network doctors, which, in my opinion, aren't the greatest fit for our family, because we had a lovely relationship with our other doctors that are now out-of-network. But if I want to treat my one daughter for her skull deformity and my other daughter for some sensory issues, I need to beg my new pediatrician for a referral to those specialists I was already in a relationship with before I switched to my new insurance. AND THEN, even after doing all of that, I asked for a referral and didn't understand that an authorization was required for surgery. So, I wasted the time of those at my new in-network pediatrician's office (which they are a lovely and truly helpful bunch - they are working the insurance hoops too, otherwise, they don't eat), and I've now wasted a lot of other people's time (neurosurgery at Children's and Inova) and I've drunk a couple of glasses too many of the vino in the process.
So now, our surgery was cancelled because insurance didn't like the surgeon we wanted to go to. I have to go to surgeons who provide a surgery I don't want for my child. I'm having to visit providers I don't plan to go to, taking up their time and money from our insurance provider to see them. I've been of Children's National a couple of times now and I don't need to be taking up appointment slots. Furthermore, we received a second denial for our appeal and now I'm going to have to bother plenty of peoples at the Maryland Insurance Administration (also, a wonderfully helpful bunch and they have really caused all of this to move forward quickly).
All in all, this does seem like quite the broken system. Doctors are not able to practice medicine because they have to jump through hoops to receive compensation - doctors have to eat too :). They have to overbook themselves to make enough money to live and they aren't able to suggest the best care of their patients, only the care that is available in a small pool in their local area. That sounds like a recipe for disaster. We have experienced that disaster personally, and we don't have a truly complex case that involved multiple offices.
All in all, I've spent a ridiculous amount of time just in the last month going to appointments, making phone calls and writing appeals. That time should have been spent caring for my children, building up my husband and nurturing our family. I really feel for everyone who is at the mercy of this system and I pray that something can be done about it very, very soon.
Wednesday, April 1, 2015
Wednesday, March 18, 2015
Well, that was interesting.
Everybody just hold your breath. For the next week please.
After a lot of hard work, from some very dedicated people, UnitedHealthcare has denied our claim. While this wasn't completely out of left field - I do hope they jump on the "hey, get us things on time bandwagon!" It seems that we will need to reschedule our surgery but, through our appeal, we should eventually get the green light for surgery with Dr. Fearon.
It's possible that we could get that decision this week. It's possible that we could still have surgery on March 24th - but at this point it would only be by a divine act of God. Which hey, didn't He say something like that was possible?
Thank you for all of your prayers. Truly, they have sustained us. And hopefully they will bring about a positive decision for our little girl soon!
After a lot of hard work, from some very dedicated people, UnitedHealthcare has denied our claim. While this wasn't completely out of left field - I do hope they jump on the "hey, get us things on time bandwagon!" It seems that we will need to reschedule our surgery but, through our appeal, we should eventually get the green light for surgery with Dr. Fearon.
It's possible that we could get that decision this week. It's possible that we could still have surgery on March 24th - but at this point it would only be by a divine act of God. Which hey, didn't He say something like that was possible?
Thank you for all of your prayers. Truly, they have sustained us. And hopefully they will bring about a positive decision for our little girl soon!
Friday, March 13, 2015
The Authorization!
At this very moment, the only thing holding us back from successfully moving forward with surgery is to have the authorization paper faxed to the insurance company.
Seriously, every person is ready to move forward at rapid speed - just one piece of paper! Please pray the authorization is completed correctly and faxed quickly to the correct person at our insurance company.
THANK YOU!
Seriously, every person is ready to move forward at rapid speed - just one piece of paper! Please pray the authorization is completed correctly and faxed quickly to the correct person at our insurance company.
THANK YOU!
You did it!
"You did it! Now it's done!"
This children's song has been stuck in my head for the past 12 hours, or so, because WE DID IT! It's not quite done ... but to use an analogy, the birds are in hand, just not on the dinner table yet.
Yesterday, was an awesome day and I know that your prayers really got us through. I did a whole host of things, but mostly, spent about six hours on the phone and four or so hours in doctor's office with the girls. We got the necessary authorization and that will be sent to the insurance company today.
I will also get a letter from my PCP stating that delaying the surgery will harm Azelie's health and that should seal the deal to get an answer likely by the end of the day but at latest early next week. At that, my friends, is the power of grace. We fought hard and Jesus won. YES!
Thank you ALL for your prayers and positivity through this whole process. We are still not in the clear but I am confident we have enough time and enough people on our side, that this whole process will go smoothly to having our insurance company at minimum cover the fees associated with the surgery.
Please pray for smooth sailing behavior-wise for the little ladies and for all of the necessary paperwork to go where it needs to go (faxes like to get lost, people get busy and crazy stuff can still happen) .... it's not really over, until it's over.
Pier Giorgio .... enjoy that drink, my friend!
This children's song has been stuck in my head for the past 12 hours, or so, because WE DID IT! It's not quite done ... but to use an analogy, the birds are in hand, just not on the dinner table yet.
Yesterday, was an awesome day and I know that your prayers really got us through. I did a whole host of things, but mostly, spent about six hours on the phone and four or so hours in doctor's office with the girls. We got the necessary authorization and that will be sent to the insurance company today.
I will also get a letter from my PCP stating that delaying the surgery will harm Azelie's health and that should seal the deal to get an answer likely by the end of the day but at latest early next week. At that, my friends, is the power of grace. We fought hard and Jesus won. YES!
Thank you ALL for your prayers and positivity through this whole process. We are still not in the clear but I am confident we have enough time and enough people on our side, that this whole process will go smoothly to having our insurance company at minimum cover the fees associated with the surgery.
Please pray for smooth sailing behavior-wise for the little ladies and for all of the necessary paperwork to go where it needs to go (faxes like to get lost, people get busy and crazy stuff can still happen) .... it's not really over, until it's over.
Pier Giorgio .... enjoy that drink, my friend!
Thursday, March 12, 2015
An Insurance Snag
I hate doing things last minute. I'm a planner and enjoy planning until kingdom come. But it seems that life (ahem, Jesus) has put us in the precarious situation we are currently in. Obviously, He wants to be glorified through this whole thing because, get a load of this .....
We scheduled surgery about a month ago. Dr. Fearon turned out to be our of network - OK, not so bad, not so bad. His fees come to about $10,000. I don't have that, but I can raise that (thank you previous missionary work). But that would be all me and my effort.
So now, our insurance wants to deny the whole claim because we haven't gone through an in-network PCP to and in-network surgeon. We would owe all of our fees up front if we choose to go the self-pay route. All $43,101.00 of them. Now, I get it .... insurance companies have an algorithm and there are certain providers who fit into that. They then participate with UnitedHealthcare and UnitedHealthcare knows they are providing the best care within their guideline.
When you need a specialist, your in-network PCP can suggest another in-network specialist and again, United Healthcare knows that new specialist is totally kosher with all of their rules. Great. Find another in-network specialist.
Well, our story looks like this .... go to the wrong type of specialist from a non in-network doctor who doesn't participate with any insurance, get the incorrect information. Finally schedule with a neurosurgeon under a different insurance that doesn't require referrals for specialists. Move to a new insurance in a new state and see a whole host of non-network doctors that we pay for completely out of pocket to try to treat A, then attempt to integrate all of those medical records into a system that we have not been conforming to for about five years (that would be the children's pediatric insurance system). And you get the following challenge:
We didn't start this process with an in-network doctor. We didn't stay with and in-network surgeon and so we don't get coverage that we need.
Now before we grab our pitchforks, let's just look at this from the insurance perspective. They don't know if my non-in-network PCP is a quack or even a medical doctor (she is, FYI), so when she authorizes me to see someone, it doesn't mean much to them. Furthermore, they don't have any sort of data on Dr. Fearon and it would take them a bunch of extra time to figure that out. They ARE a private company, needing to make a profit, so that people can have jobs and our economy can continue to eek forward.
Soooooooooooo, we need to be able to 1) get a referral to an in-network surgeon, 2) get a second opinion from them, 3) weigh whether or not that surgeon is a better fit for us and 4) if they are not, write a very informative appeals letter about why the in-network surgeon is not as qualified to do the surgery on Azelie as Dr. Fearon.
And all of that basically has to happen by tomorrow afternoon. Right.
So, unless a ridiculous number of things - which I am prepared to at least attempt - fall into place in the next 48 hours, we are probably going to have to re-schedule.
Now, rescheduling isn't the end of the world. But I do have another daughter who also likes her schedules. She is prepared to get on a plane on the 22 (March 22nd, that is) and I think she might just drive herself, if we don't take her :) Also, my saintly mother is coming with us and has taken the week off work. And I've just planned about a ba-gillion things for the week of March 23rd! So please join me in praying for a miracle of bureaucratic might that the insurance company magically files it's paperwork quickly (me calling them every hour probably won't hurt either :)
Pier Girogio Frassati - dude, we need you! Pray for us! And have a drink for me because it's Lent down here.
We scheduled surgery about a month ago. Dr. Fearon turned out to be our of network - OK, not so bad, not so bad. His fees come to about $10,000. I don't have that, but I can raise that (thank you previous missionary work). But that would be all me and my effort.
So now, our insurance wants to deny the whole claim because we haven't gone through an in-network PCP to and in-network surgeon. We would owe all of our fees up front if we choose to go the self-pay route. All $43,101.00 of them. Now, I get it .... insurance companies have an algorithm and there are certain providers who fit into that. They then participate with UnitedHealthcare and UnitedHealthcare knows they are providing the best care within their guideline.
When you need a specialist, your in-network PCP can suggest another in-network specialist and again, United Healthcare knows that new specialist is totally kosher with all of their rules. Great. Find another in-network specialist.
Well, our story looks like this .... go to the wrong type of specialist from a non in-network doctor who doesn't participate with any insurance, get the incorrect information. Finally schedule with a neurosurgeon under a different insurance that doesn't require referrals for specialists. Move to a new insurance in a new state and see a whole host of non-network doctors that we pay for completely out of pocket to try to treat A, then attempt to integrate all of those medical records into a system that we have not been conforming to for about five years (that would be the children's pediatric insurance system). And you get the following challenge:
We didn't start this process with an in-network doctor. We didn't stay with and in-network surgeon and so we don't get coverage that we need.
Now before we grab our pitchforks, let's just look at this from the insurance perspective. They don't know if my non-in-network PCP is a quack or even a medical doctor (she is, FYI), so when she authorizes me to see someone, it doesn't mean much to them. Furthermore, they don't have any sort of data on Dr. Fearon and it would take them a bunch of extra time to figure that out. They ARE a private company, needing to make a profit, so that people can have jobs and our economy can continue to eek forward.
Soooooooooooo, we need to be able to 1) get a referral to an in-network surgeon, 2) get a second opinion from them, 3) weigh whether or not that surgeon is a better fit for us and 4) if they are not, write a very informative appeals letter about why the in-network surgeon is not as qualified to do the surgery on Azelie as Dr. Fearon.
And all of that basically has to happen by tomorrow afternoon. Right.
So, unless a ridiculous number of things - which I am prepared to at least attempt - fall into place in the next 48 hours, we are probably going to have to re-schedule.
Now, rescheduling isn't the end of the world. But I do have another daughter who also likes her schedules. She is prepared to get on a plane on the 22 (March 22nd, that is) and I think she might just drive herself, if we don't take her :) Also, my saintly mother is coming with us and has taken the week off work. And I've just planned about a ba-gillion things for the week of March 23rd! So please join me in praying for a miracle of bureaucratic might that the insurance company magically files it's paperwork quickly (me calling them every hour probably won't hurt either :)
Pier Girogio Frassati - dude, we need you! Pray for us! And have a drink for me because it's Lent down here.
Friday, February 20, 2015
Financial Assistance for Azelie's Surgery
For those of you who have expressed interest in helping us financially, you can find more information about that here:
Surgery for Azelie!
(see how that rhymes if you say it all catchy-like?!)
Surgery for Azelie!
(see how that rhymes if you say it all catchy-like?!)
Wednesday, February 18, 2015
Azelie Surgery Update
The details for Azelie's surgery, thus far:
Surgery will be done at The Craniofacial Center in Dallas
which is located in Medical City Children's in Medical City Dallas Hospital on
March 24, 2015 @ 12:30pm
Dr. Jeffery Fearon will be the head surgeon and will be assisted by a neurosurgeon
If you would like to commit to praying for us and all of the medical staff before, during and after surgery, please leave a comment (and a way for me to contact you).
Surgery will be done at The Craniofacial Center in Dallas
which is located in Medical City Children's in Medical City Dallas Hospital on
March 24, 2015 @ 12:30pm
Dr. Jeffery Fearon will be the head surgeon and will be assisted by a neurosurgeon
If you would like to commit to praying for us and all of the medical staff before, during and after surgery, please leave a comment (and a way for me to contact you).
You want to what?!?
After many, many, many appointments with Dr. Phillips in Annapolis, we have all come to the conclusion that surgery is the next step for us. It's so obvious that it's almost like, well, let's get on with it then! I am currently on hold waiting to actually schedule a date for the surgery. And I'm nervous (and I have vertigo).
Anyhow, we got to a point around Christmas where A started showing signs of a ridge protruding on her forehead. It doesn't seem that anything serious is happening, but that calls for another scan of some sort. Which lead us to face the fact that we didn't appreciate our original neurosurgeon as much as we could of, and instead, prefer a surgeon in Texas.
After contacting Dr. Fearon's office, we started the back and forth of pictures, explaining our particular case and making sure Dr. Fearon was the guy for us. I recounted my conversation with A's original neurosurgeon, Dr. Fearon interrupted me to say "actually, neurosurgeons don't fix this problem. I fix this problem." Well then, your boldness has sold you, good sir!
{small pause to speak with the scheduling department}
I will have to wait until Monday to schedule - but here we go!
Anyhow, we got to a point around Christmas where A started showing signs of a ridge protruding on her forehead. It doesn't seem that anything serious is happening, but that calls for another scan of some sort. Which lead us to face the fact that we didn't appreciate our original neurosurgeon as much as we could of, and instead, prefer a surgeon in Texas.
After contacting Dr. Fearon's office, we started the back and forth of pictures, explaining our particular case and making sure Dr. Fearon was the guy for us. I recounted my conversation with A's original neurosurgeon, Dr. Fearon interrupted me to say "actually, neurosurgeons don't fix this problem. I fix this problem." Well then, your boldness has sold you, good sir!
{small pause to speak with the scheduling department}
I will have to wait until Monday to schedule - but here we go!
Monday, September 1, 2014
Pier Giorgio Frassati, pray for us!
Starting September 5th (we like Mother Teresa, too :) we will be praying for the miraculous healing of A's head. Either for the suture she does have to become unstuck, or for a suture to miraculously form. That's not too much to ask, eh?
Pier Giorgio Frassati is in need of another miracle and we are in need of a miracle ... so let's pray together! Starting this Friday, September 5th, we will pray this novena to Pier Giorgio Frassati for the complete healing of A's craniosynostosis.
Blessed Pier Giorgio Frassati ....
PRAY FOR US!
Again, the link is: http://www.frassatiusa.org/index.cfm?load=page&page=256
Pier Giorgio Frassati is in need of another miracle and we are in need of a miracle ... so let's pray together! Starting this Friday, September 5th, we will pray this novena to Pier Giorgio Frassati for the complete healing of A's craniosynostosis.
Blessed Pier Giorgio Frassati ....
PRAY FOR US!
Again, the link is: http://www.frassatiusa.org/index.cfm?load=page&page=256
The End of Summer!
So, it's labor day. And the end of summer. Yes!
Though I documented our progress with chicken scratch on some paper over the last month, I in no way got to write it all out here. I'm still trying to breathe .... maybe it's the humidity here?
Great news -- A is doing fabulously and has been able to release any sort of muscles torques and tightnesses that were impeding her growth and the un-fusing of her suture. Bad news -- it seems that she possibly didn't have a suture to begin with.
The head is composed of several bones and the two of the "top" of the head are called the parietal bones. The parietals run along the sagtital suture, which should expand as a child grows to allow for brain growth. A's parietal bones seem to have a suture that is twisted and overlapped in the front but solid bone in the back. And that seems to be the worst case scenario.
Overall, I'm pretty thrilled that she has been able to receive the treatment she has so far and I'm still hopeful that something might work out.
Though I documented our progress with chicken scratch on some paper over the last month, I in no way got to write it all out here. I'm still trying to breathe .... maybe it's the humidity here?
Great news -- A is doing fabulously and has been able to release any sort of muscles torques and tightnesses that were impeding her growth and the un-fusing of her suture. Bad news -- it seems that she possibly didn't have a suture to begin with.
The head is composed of several bones and the two of the "top" of the head are called the parietal bones. The parietals run along the sagtital suture, which should expand as a child grows to allow for brain growth. A's parietal bones seem to have a suture that is twisted and overlapped in the front but solid bone in the back. And that seems to be the worst case scenario.
Overall, I'm pretty thrilled that she has been able to receive the treatment she has so far and I'm still hopeful that something might work out.
Saturday, August 2, 2014
Hair Testing and the Like
When A was about 5 months old, we started her on a nutritional balancing program. Nutritional balancing (NB) uses hair mineral analysis (a sample of hair in analyzed at Analytical Research Labs in Arizona) to reveal mineral imbalances in the body. It took awhile for her hair to grow in enough to be able to send it away to get analyzed, but her hair came back to show that she had high levels of heavy metals and that her body had several underlying infections she was struggling to fight off.
You can read more about why that would be here.
While we've tried to keep her on a program as much as possible, it was actually much easier to feed her supplements when she was not walking (or climbing, which is her only past time at this point). While we've gotten one round of supplements in daily for the past several months, I'd really like to be getting her supplements in two times daily.
NB focuses on supplying the body with enough minerals to allow it to produce enough energy to deal with any health issues you are facing. Personally, we love NB and after being on GAPS, Paleo and Weston A Price, it's by far the best and most economical option.
I'm pretty excited to see her results as we've continued to have her retested and move forward with NB.
You can read more about why that would be here.
While we've tried to keep her on a program as much as possible, it was actually much easier to feed her supplements when she was not walking (or climbing, which is her only past time at this point). While we've gotten one round of supplements in daily for the past several months, I'd really like to be getting her supplements in two times daily.
NB focuses on supplying the body with enough minerals to allow it to produce enough energy to deal with any health issues you are facing. Personally, we love NB and after being on GAPS, Paleo and Weston A Price, it's by far the best and most economical option.
I'm pretty excited to see her results as we've continued to have her retested and move forward with NB.
July Appointments
So the weeks of three appointments rushed by and we have great news to report! A face has rounded considerably and her occiput (the bone in the back) has "fallen" backwards, which will allow her skull to even out.
In "bad" news .... whenever I refer to bad news, I always think of this :)
Anyhow, her speech pathologist threw out the term "apraxia of speech." That's a bit serious. Or maybe it's not. So, for now, SIGN LANGUAGE! We'll be learning sign language together to help A communicate. Is there a saint for sign languaging?
I will be posting a string of pictures to show our progress after this weekend (the hubby was away this past week, so 'nothing' but eating and sleeping happened this week).
In "bad" news .... whenever I refer to bad news, I always think of this :)
Anyhow, her speech pathologist threw out the term "apraxia of speech." That's a bit serious. Or maybe it's not. So, for now, SIGN LANGUAGE! We'll be learning sign language together to help A communicate. Is there a saint for sign languaging?
I will be posting a string of pictures to show our progress after this weekend (the hubby was away this past week, so 'nothing' but eating and sleeping happened this week).
Friday, July 11, 2014
The Onslaught Begins
First, the word onslaught is so dramatic, I had to use it.
For the past two weeks, we've only had one appointment a week, due to some scheduling issues. Next week begins three sessions a week and I have a feeling it's going to be a lot. It seems that having cranio sacral work drags up tons of other stuff too. I believe that our physical, emotional, mental and spiritual nature is all bound up in one but when you start moving things around, it seems that emotional stuff can really get the best of you. Yes, we did just move and have a death in the family and have some huge schedule adjustments for two small and wonderful girls, but I'm thinking this emotional roller coaster I feel like I am on is connected to Dr. P's work as well.
I did want to give an update though .... with only those two appointments, we have seen a HUGE improvement in A's ability to communicate and in the words she can use. We now have toy, balloon, boy, water, possibly Daddy and yes. And chick chick .... this girl loves her meat, particularly chicken. Those are great improvements and I'm so thrilled every time to hear her say things, any things. Even noises are great.
As we move into the three times a week appointments, I'm going to be giving shorter blog posts after each appointment, just to keep tabs on what is going on and what is changing. Eventually I am hoping to put together a bunch of pictures, so you can actually see the changes that are taking place. For those of you who have a sagittal baby, you'll know what I mean by the following description:
So far, A's head has gotten wider right above the ears, the top of the head has expanded upward and most excitingly the "doorknob" on the back of her head has been significantly reduced (possibly to the point of it being almost flat, but I don't think I'll go that far yet). Her head is still longer than it should be and her eyes are still very wide set and almond shaped ... I think that's going to be the strangest part, when her face becomes more full and round and she doesn't "look like" A anymore.
So, this weekend has some exciting things in store (baptism, party, birthday party for Z), THEN! the many appointments begin!
For the past two weeks, we've only had one appointment a week, due to some scheduling issues. Next week begins three sessions a week and I have a feeling it's going to be a lot. It seems that having cranio sacral work drags up tons of other stuff too. I believe that our physical, emotional, mental and spiritual nature is all bound up in one but when you start moving things around, it seems that emotional stuff can really get the best of you. Yes, we did just move and have a death in the family and have some huge schedule adjustments for two small and wonderful girls, but I'm thinking this emotional roller coaster I feel like I am on is connected to Dr. P's work as well.
I did want to give an update though .... with only those two appointments, we have seen a HUGE improvement in A's ability to communicate and in the words she can use. We now have toy, balloon, boy, water, possibly Daddy and yes. And chick chick .... this girl loves her meat, particularly chicken. Those are great improvements and I'm so thrilled every time to hear her say things, any things. Even noises are great.
As we move into the three times a week appointments, I'm going to be giving shorter blog posts after each appointment, just to keep tabs on what is going on and what is changing. Eventually I am hoping to put together a bunch of pictures, so you can actually see the changes that are taking place. For those of you who have a sagittal baby, you'll know what I mean by the following description:
So far, A's head has gotten wider right above the ears, the top of the head has expanded upward and most excitingly the "doorknob" on the back of her head has been significantly reduced (possibly to the point of it being almost flat, but I don't think I'll go that far yet). Her head is still longer than it should be and her eyes are still very wide set and almond shaped ... I think that's going to be the strangest part, when her face becomes more full and round and she doesn't "look like" A anymore.
So, this weekend has some exciting things in store (baptism, party, birthday party for Z), THEN! the many appointments begin!
Tuesday, July 8, 2014
We made it!
We are now officially living in Hyattsville. And I'm never moving. Ever again. In fact, I'm never leaving this house ... even if someone pays me to leave, packs my things and sends me on a vacation to Rome first. Seriously, I love this house AND this community AND our garden. AND I DETEST MOVING.
And on top of making it, we really made it. Dr. P agreed to treat A at a reduced cost. Like, it should have been about $1000 a month and instead it's within our budget. UH-MAZ-ING. I feel like it should have been a bit more challenging really. I kind of forgot about paying her and kind of half prayed my novena to Pier Giorgio Frassati (I chose him for the financial aspect, because, hey, he still needs a miracle) and it worked.
I simply went to her first appointment and we agreed to chat via email. She asked what we could pay and gave us that rate. WOW! I ran around my house yelling loudly for awhile and probably scared the girls or something, but WOW! We made it.
And on top of making it, we really made it. Dr. P agreed to treat A at a reduced cost. Like, it should have been about $1000 a month and instead it's within our budget. UH-MAZ-ING. I feel like it should have been a bit more challenging really. I kind of forgot about paying her and kind of half prayed my novena to Pier Giorgio Frassati (I chose him for the financial aspect, because, hey, he still needs a miracle) and it worked.
I simply went to her first appointment and we agreed to chat via email. She asked what we could pay and gave us that rate. WOW! I ran around my house yelling loudly for awhile and probably scared the girls or something, but WOW! We made it.
Friday, June 20, 2014
Moving Forward
The last month, or so, has been one crazy ride. Starting in the middle of May, we attended my sister's dental graduation, and ordination, several family parties, another ordination, a wedding and a semi-week at the beach. Whew! That was a lot. Now it's time for a change.
In one week, we'll be moving closer to the husband's work and closer to Dr. P for A's treatment. We just moved here, hoping that we'd be settling in for awhile. I have to say that the past eight months have been incredibly taxing. There has been a lot of growth in our family and while I'm excited to move forward -- I'm rather scared.
We've moved a bit and every time it's just so promising ... and then, well, it doesn't quite work out. At this point, I'm not too interested in it all working out with rainbows and unicorns, but honestly, this is my child's head (!) and it's a bit serious.
With all of that being said, we could use a few extra prayers for the next week as we get all of those extra things around the house rounded up and put on a truck and moved to a new location.
In one week, we'll be moving closer to the husband's work and closer to Dr. P for A's treatment. We just moved here, hoping that we'd be settling in for awhile. I have to say that the past eight months have been incredibly taxing. There has been a lot of growth in our family and while I'm excited to move forward -- I'm rather scared.
We've moved a bit and every time it's just so promising ... and then, well, it doesn't quite work out. At this point, I'm not too interested in it all working out with rainbows and unicorns, but honestly, this is my child's head (!) and it's a bit serious.
With all of that being said, we could use a few extra prayers for the next week as we get all of those extra things around the house rounded up and put on a truck and moved to a new location.
Monday, June 9, 2014
Delays and Possibly Delays
So, it seems that single suture craniosynostosis could potentially cause developmental delays (speech, poor memory learning disabilities, etc.). That would follow logic. Put pressure on the brain (or the brain stem because of pressure on the occiput -- the bone in the back of the head) and certain functions could be impacted.
Last week, A was evaluated by early intervention. I wasn't exactly worried about anything in particular, but the evaluation is free (as it is in most states ... so get 'em early and often! or something like that) and something serious, like cranio, can worry anyone. Turns out she is delayed in speech, and has a few issues with other things, but speech was the big one. I've read lots of different things by different people at different times and I've concluded that the higher likelihood of developmental delays would definitely merit surgery. So why have we decided to pursue other means of healing?
Well .... surgery is an excellent option if there were absolutely no other way to help the body help itself. I have an alternative view of the body, which fits into my worldview. This does not make me right and others wrong, but it does make me have to make certain choices for my children. Honestly, I wish I didn't have to make this choice and I could wait until my children could reason all of these things out by themselves, but that is one of the kickers in parenting, no?
Anyhow, I believe that the body can and will heal itself, given the opportunity. Therefore, craniosynostosis isn't so much something to be attacked as quickly as possible but instead something to take a look at and identify why A's head is growing a certain way.
Our time with Dr. Phillips has been illuminating on that front. As I wrote earlier, the muscles of the body all interact with one another, the bones interact and when one thing is out of balance, everything can get out of balance. Right now, her skull is pushing on her brain, causing a speech delay. I think a more long-term approach would be to get the body to stop growing in a certain way that causes the pinching of the brain. Through my research, I concluded that teaching the muscles of the body and the bones of the head to grow differently is more effective than forcing them to be a certain way.
I have to admit, I dropped the ball and didn't follow through with finding a great cranio sacral therapist for A from the get go. It's so sad to look back and to see how my shortcomings have affected both of our children but such great good has come from this learning process. I used to read things like that from others and wonder -- how crazy are those people? I guess we're on the crazy train over here. Cranio has been such a positive in our life and in our marriage and I have to say that I'm glad now that we have chosen the path we did. Hopefully, there will be no more dark valleys but I think we'll be alright if there are.
Last week, A was evaluated by early intervention. I wasn't exactly worried about anything in particular, but the evaluation is free (as it is in most states ... so get 'em early and often! or something like that) and something serious, like cranio, can worry anyone. Turns out she is delayed in speech, and has a few issues with other things, but speech was the big one. I've read lots of different things by different people at different times and I've concluded that the higher likelihood of developmental delays would definitely merit surgery. So why have we decided to pursue other means of healing?
Well .... surgery is an excellent option if there were absolutely no other way to help the body help itself. I have an alternative view of the body, which fits into my worldview. This does not make me right and others wrong, but it does make me have to make certain choices for my children. Honestly, I wish I didn't have to make this choice and I could wait until my children could reason all of these things out by themselves, but that is one of the kickers in parenting, no?
Anyhow, I believe that the body can and will heal itself, given the opportunity. Therefore, craniosynostosis isn't so much something to be attacked as quickly as possible but instead something to take a look at and identify why A's head is growing a certain way.
Our time with Dr. Phillips has been illuminating on that front. As I wrote earlier, the muscles of the body all interact with one another, the bones interact and when one thing is out of balance, everything can get out of balance. Right now, her skull is pushing on her brain, causing a speech delay. I think a more long-term approach would be to get the body to stop growing in a certain way that causes the pinching of the brain. Through my research, I concluded that teaching the muscles of the body and the bones of the head to grow differently is more effective than forcing them to be a certain way.
I have to admit, I dropped the ball and didn't follow through with finding a great cranio sacral therapist for A from the get go. It's so sad to look back and to see how my shortcomings have affected both of our children but such great good has come from this learning process. I used to read things like that from others and wonder -- how crazy are those people? I guess we're on the crazy train over here. Cranio has been such a positive in our life and in our marriage and I have to say that I'm glad now that we have chosen the path we did. Hopefully, there will be no more dark valleys but I think we'll be alright if there are.
Drive your Car .... but not on Route 66
Put the car in drive. Just put it in drive, my friends.
Once you're moving, it seems that great things happen. We talked with Dr. Phillips (now referred to as Dr. P) about having to drive to Annapolis and not being able to start until July (she's booked!). She suggested a cranio sacral therapist, that she trained herself, who is about half an hour from us AND on this side of the crazy that is route 66 and 495. If you have never experienced the one two punch of Route 666, as we call it, and 495 -- DON'T. It will hurt your brain.
But this great news for us because we can get started in June, hopefully.
We're still working out the finances. Honestly, we can barely afford our bills right now, and another rent payment on top of ours is out of the question.
After emailing Other Cranio Sacral Therapist (or OCST), she agreed to meet with us on a barter basis. YES! I love a good barter.
Great. June is in the bag. Now for the rest of treatment, however long it might take. One step at a time, one step at a time.
Once you're moving, it seems that great things happen. We talked with Dr. Phillips (now referred to as Dr. P) about having to drive to Annapolis and not being able to start until July (she's booked!). She suggested a cranio sacral therapist, that she trained herself, who is about half an hour from us AND on this side of the crazy that is route 66 and 495. If you have never experienced the one two punch of Route 666, as we call it, and 495 -- DON'T. It will hurt your brain.
But this great news for us because we can get started in June, hopefully.
We're still working out the finances. Honestly, we can barely afford our bills right now, and another rent payment on top of ours is out of the question.
After emailing Other Cranio Sacral Therapist (or OCST), she agreed to meet with us on a barter basis. YES! I love a good barter.
Great. June is in the bag. Now for the rest of treatment, however long it might take. One step at a time, one step at a time.
Tuesday, May 20, 2014
Navigating the Insurance World
We have been so fortunate to be able to stay on my husband's previous insurance, which is FABULOUS insurance, to say the least. We are getting to the point though where it might be time to move on and to switch to the insurance of his current employer.
And so, the insurance saga begins ... I guess it's not quite a saga, but it is sad that alternative therapies are not usually paid for by insurance companies. This could easily devolve into a whole health care issues post, but I will try to stay away fro that.
We spoke with Dr. Phillips about insurance and she does not participate with any insurance companies but she did offer two diagnosis codes that have worked for other patients of hers. Then I found the group number for our new insurer and called to ask about our benefits. Because my husband's new company is small, the insurance provider could not offer a yes or no to some specific based on their plan BUT the woman I spoke with was wonderfully helpful.
She mentioned that if she were the only type of provider (chiropractor and cranio sacral therapist) in a 30 mile radius, that we could apply for what is called a gap exception and receive coverage as though she were an in-network provider. I'm not sure that will fly, but we can always try it.
In all of this, I have found that calling (and bothering to no end) your insurance provider is actually worth it. Now, we'll just see how all of this pans out.
And so, the insurance saga begins ... I guess it's not quite a saga, but it is sad that alternative therapies are not usually paid for by insurance companies. This could easily devolve into a whole health care issues post, but I will try to stay away fro that.
We spoke with Dr. Phillips about insurance and she does not participate with any insurance companies but she did offer two diagnosis codes that have worked for other patients of hers. Then I found the group number for our new insurer and called to ask about our benefits. Because my husband's new company is small, the insurance provider could not offer a yes or no to some specific based on their plan BUT the woman I spoke with was wonderfully helpful.
She mentioned that if she were the only type of provider (chiropractor and cranio sacral therapist) in a 30 mile radius, that we could apply for what is called a gap exception and receive coverage as though she were an in-network provider. I'm not sure that will fly, but we can always try it.
In all of this, I have found that calling (and bothering to no end) your insurance provider is actually worth it. Now, we'll just see how all of this pans out.
Monday, May 12, 2014
A New Twist
Great news! It seems that A's head can be treated non-surgically!
Now for the back story ....
During the holidays last year (that would be Thanksgiving 2013 onward) A's head started looking "longer" and more like she had cranio. I worried but the holidays were happening. Then winter happened. That was a long, wet and cold winter, eh? And eventually we found ourselves looking at a toddler who just wasn't quite right. Her right eye drooped sometimes, she lost her balance easily (she was regressing ... yes, I know babies fall often), her sounds/language was slow and she still had that crazy gagging "thing."
(A note on the gag thing ... we visited the ENT and everything is in order physically. It seems that she has a few issues with her diaphragm--which we'll get to in a minute!)
So, after a few sleepless nights, I returned to the age old question -- "What DO we do with this blessed head?" Our original neurosurgeon is one of the best but he left me with burning questions that were just unanswered. The only answer he seemed to be able to give was that surgery fixed this problem, the "whys" shall not be seriously entertained if you won't do surgery!
Enter Dr. Fearon. Dr. Fearon, director of the Craniofacial Center in Dallas, answered my questions without even having to talk with me! I highly recommend the deformities section of their website here. It is superior-ly helpful to sort out just what is going on with all of the different types of cranial (bones of the head) stuff that is going on out there.
Anyhow, the most important information from Dr. Fearon is that single suture fusing seems to be largely caused by environmental factors. That would mean the baby gets stuck in the womb a certain way and the pressure causes the suture to close prematurely. A was stuck in my pelvis for about five months. First, ouch and second, I told you so! every chiropractor and midwife I asked. Though it's just my mommy instinct, I would definitely guess A's cranio is due to the pressure from my pelvis (poor girl!).
After reading all of that information and contacting Dr. Fearon, I got in touch with a cranio sacral therapist I had originally spoken with before A's diagnosis, Dr. Phillips, in Annapolis. Dr. Phillips usually has a three month waiting list, but she just happened to have a cancellation that week (isn't that always the way we roll!) and the girls and I drove the two hours for the appointment.
I recounted A's womb position and Dr. Phillips reported that her body structure seemed to be off. Furthermore, her craniosynostosis might just be an issue with her being stuck in the womb and was likely treatable non-surgically. Though I tried to focus on what she was saying, that was such a relief, that honestly, I missed a lot of details. It seems though, that when a child get stuck in their mother's pelvis, first, the head gets pinched but secondly, the body get twisted and can torque the diaphragm (and other muscles). The diaphragm wraps around the body and the muscle fibers connect into the trapezius muscles which stretch up throughout the occiput (which is in the back of the hear near the brain stem) and become the mucles fiber covering the brain (called the dura).
Long story short, she head was pinched in utero, which caused the fusing but on top of that, her body grew incorrectly, due to the pinching, so now her diaphragm is pulling on her brain and causing head head shape to be worse.
Good news though! Dr. Phillips has treated cranio before and is optimistic for A! Now, we'll just have to get some of the details straightened out and start treatment (which won't be until July because Dr. Phillip is mega-booked).
Now for the back story ....
During the holidays last year (that would be Thanksgiving 2013 onward) A's head started looking "longer" and more like she had cranio. I worried but the holidays were happening. Then winter happened. That was a long, wet and cold winter, eh? And eventually we found ourselves looking at a toddler who just wasn't quite right. Her right eye drooped sometimes, she lost her balance easily (she was regressing ... yes, I know babies fall often), her sounds/language was slow and she still had that crazy gagging "thing."
(A note on the gag thing ... we visited the ENT and everything is in order physically. It seems that she has a few issues with her diaphragm--which we'll get to in a minute!)
So, after a few sleepless nights, I returned to the age old question -- "What DO we do with this blessed head?" Our original neurosurgeon is one of the best but he left me with burning questions that were just unanswered. The only answer he seemed to be able to give was that surgery fixed this problem, the "whys" shall not be seriously entertained if you won't do surgery!
Enter Dr. Fearon. Dr. Fearon, director of the Craniofacial Center in Dallas, answered my questions without even having to talk with me! I highly recommend the deformities section of their website here. It is superior-ly helpful to sort out just what is going on with all of the different types of cranial (bones of the head) stuff that is going on out there.
Anyhow, the most important information from Dr. Fearon is that single suture fusing seems to be largely caused by environmental factors. That would mean the baby gets stuck in the womb a certain way and the pressure causes the suture to close prematurely. A was stuck in my pelvis for about five months. First, ouch and second, I told you so! every chiropractor and midwife I asked. Though it's just my mommy instinct, I would definitely guess A's cranio is due to the pressure from my pelvis (poor girl!).
After reading all of that information and contacting Dr. Fearon, I got in touch with a cranio sacral therapist I had originally spoken with before A's diagnosis, Dr. Phillips, in Annapolis. Dr. Phillips usually has a three month waiting list, but she just happened to have a cancellation that week (isn't that always the way we roll!) and the girls and I drove the two hours for the appointment.
I recounted A's womb position and Dr. Phillips reported that her body structure seemed to be off. Furthermore, her craniosynostosis might just be an issue with her being stuck in the womb and was likely treatable non-surgically. Though I tried to focus on what she was saying, that was such a relief, that honestly, I missed a lot of details. It seems though, that when a child get stuck in their mother's pelvis, first, the head gets pinched but secondly, the body get twisted and can torque the diaphragm (and other muscles). The diaphragm wraps around the body and the muscle fibers connect into the trapezius muscles which stretch up throughout the occiput (which is in the back of the hear near the brain stem) and become the mucles fiber covering the brain (called the dura).
Long story short, she head was pinched in utero, which caused the fusing but on top of that, her body grew incorrectly, due to the pinching, so now her diaphragm is pulling on her brain and causing head head shape to be worse.
Good news though! Dr. Phillips has treated cranio before and is optimistic for A! Now, we'll just have to get some of the details straightened out and start treatment (which won't be until July because Dr. Phillip is mega-booked).
Saturday, December 7, 2013
That Blogging Hiatus
OK that was a big blogging hiatus. Mostly because nothing exciting is happening but ALSO because we:
And that's the news from Lake Woebegone.
- moved
- started a new business
- had a different medical diagnosis with our first
- had some business trips thrown in the mix
And that's the news from Lake Woebegone.
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