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

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.

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.

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).

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!

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.

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.

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.

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.

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.

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).