Saturday, December 7, 2013

That Blogging Hiatus

OK that was a big blogging hiatus.  Mostly because nothing exciting is happening but ALSO because we:
  • moved 
  • started a new business
  • had a different medical diagnosis with our first
  • had some business trips thrown in the mix
But A is doing great.  Her hair is growing in, so I can't tell if that is causing her head to look more rounded, but I think it looks more rounded.  Her head circumference has transitioned from the 99th percentile to the 75th percentile.  Usually children with craniosynostosis score in the 99th percentile because their head is so oblong ... so I guess this is promising?  Or it's a disaster waiting to happen.  We just have to wait from our pediatrician to get all of our medical records from all over the place (did I mention we've moved six times in eighteen months? Crazy, I know) before we can get a read on that.

And that's the news from Lake Woebegone.

Thursday, August 29, 2013

Children's Hospital

We just had a second appointment for A this past Monday.  It went very well.  The diagnosis and prognosis are still the same.  Surgery is still suggested and we'll need to start seeing an ophthmalogist to monitor the pressure on A's retinas to make sure there isn't any sort of build up in her skull.  We'll see an ophthamologist every six months until she is three years old.

We're seeing her chiropractor every other week and her cranio sacral therapist every week.  It's been nice to get into a bit of a rhythm.  That's also allowed for a lot of introspection.

Mainly, I think over her first couple of weeks of life and think ... wow, baby, you've been through a lot.  The surgery for craniosynostosis for infants under 8 weeks of age might have been something we would have considered but there was no way for us to have received the diagnosis before the 8 week mark.  Life is funny like that sometimes.

Our chiropractor started a new adjustment on Wednesday (or I think I should say her body asked for such an adjustment) that is for the hard palate.  Moving to new areas in the head is always a good thing in my mind because it seems that more and more pieces of the puzzle are being unlocked.  Natural sorts of healing are slow but steady.

Otherwise, there's nothing new to report in our neck of the woods.  Many blessings to you and yours!

Friday, August 16, 2013

An August Update

So, again, I've missed more than one Monday .... le sigh.

At this point, I'm SO excited about our progress.  It's slow and steady but it's steady.  Our cranio sacral appointments have been excellent for the past two weeks with a lot of movement in the temporal bones that would not be possible if the suture were still completely fused.  I'm guessing that would mean we're seeing at least a bit of loosening ... somewhere?  Being the parent in this situation is no fun because I can't make any sort of "professional" opinions.

Our chiropractor went away on vacation, so we missed a week and I could definitely tell with A's head shape.  She developed almost a ridge on her forehead.  She is going through a growth spurt right now and I'm guessing as much support as we can offer would be helpful ... but this is uncharted territory, so your guess is as good as mine.

As for nutrition, we have been able to solidly get A's supplements into her and I think that's really causing a change in her body.  Her most recent hair test showed an elimination of toxic metals but still not the types of changes I'd like to be seeing.  A protocol also takes some time to get started.  The body needs time to start up the eliminative organs and to open the decongenstive pathways.  Hopefully the next three months will be huge for her.

Oh!  We have officially entered the realm of "crawl/walking," so Daddy has been chasing A around with the sauna lamp.  It allows for more saun-ing but it also involves more head bumping.  Our first literally never fell.  Ever.  But A falls constantly and seems to bump her head often.  I've fortunately gotten over worrying about it but it definitely forces me to be truly committed to supplementation, sauna therapy and our appointments, as well as making sure the house is baby friendly.

Tuesday, July 23, 2013

Whoops!

Well, Monday passed me by!  Oops.

At this point, we are settled into cranio sacral appointments and chiro appointments (for each of the girls) weekly.  Yikes!  It's getting to be expensive, but we have such excellent help that I'd like to take advantage while we can.

A's head is showing significant rounding as our appointments progress.  I'm considering whether or not I'd like to post pictures due to her privacy being protected.  I'm leaning toward it though, just because it's so apparent that her head is rounding.  So, stay tuned for that sometime possibly, maybe.

Her cranio appointment was fabulous today.  It seems that the suture is becoming flatter as we continue with cranio work.  The therapist commented that she felt the two plates in the top of the head moving upward, which ... any movement is good movement! 

She is taking a mega nap right now and that is usually a good sign of healing on her part.  Good appointments usually equal a lot of sleeping.

In other news, we could be looking at some more life changes, so we'd appreciate your prayers!

Monday, July 15, 2013

The Weekly Update

I feel like things have finally settled down after all of the moving, so I'm committing to a regular weekly post for this blog until further notice.

This week we have both cranio sacral work and a chiropractor appointment coming up.  A is just about to crawl and her teeth are coming in something fierce, but overall she is a happy little bundle of joy.  She is usually smiling, and when she's crying it's interspersed with smiles ... I have a lot to learn on that front.

We are continuing to give her supplements.  I feel so bad for her though, because they taste terrible and it seems that she's just not quite ready for food (which would help mask the taste a bit).  They don't mix well in breast milk and they make her smell awful, but with that small rant aside, she's taking them like a champ.

Sauna therapy also continues and, I think, is quite effective. At least she really likes that part. :)

Should anything miraculous occur toward the end of the week, I'll give an update!  Otherwise, thanks for the prayers and keep them up.

Thursday, July 11, 2013

The New Therapist

On Tuesday, A had her first cranio sacral appointment, and WOW!  I was really impressed. 

Quick background:  Cranio sacral therapy is a massage therapy techniques that focuses on the cranials (head) and sacrum (talibone area).  It gently removes imbalances in the patient's body to allow the body to heal itself.  More can be found here: www.upledger.com

As I held A in my arms, I could see the bones in her head moving around.  Strange, yes ... but I good sign in my mind.  It was encouraging to know that the bones in her head are able to move still and I know that she will continue to grow and adapt as well as she is able.  The body is an amazing thing.

We've really committed to her supplementation protocol and detoxification with infrared sauna therapy.  We're hoping that clearing out her heavy metal toxicities will allow her body to adapt as well as it can.

I think we've decided that whether or not her suture comes unstuck, we will not choose surgery.  At least for now.  We've seen enough to know that her body is capable of adapting as it needs to for now.

Friday, June 28, 2013

Oh look ...

Look at this, two posts, back to back ... wow!

After more reflection on our month, I have to admit that I am nervous/worried/scared/etc.  I guess every parent has normal concerns about their children but I it just hit home that having a complication on top of just raising a child is harder that I anticipated.

We've moved several times over the past year, had a baby and recovered from mold exposure and I think we're finally a bit more stable.  Fortunately and unfortunately, it's given me the ability to reflect and realize that I actually have been avoiding truly facing our decision about surgery and how that could affect A long-term.  Like, I'm avoiding pluming the depths of my emotions and soul to feel how that feels ... ah, feelings, how I can loathe thee at times!  Thou art so powerful!

As I looked at her head last night, I thought "man, I hope you're hair grows in soon ... because your head is just funny shaped."  I feel in my gut that she's going to be fine but I still wonder how this will affect her and how everything will turn out in the end.  If anything, her personality points me to believe she's going to make the best of anything.

Thursday, June 27, 2013

And that was June ...

Well, it seems that the month of June just slipped through the cracks here at our house.  I'm currently starting a practice (www.redemptivenutrition.com) and the hubby is starting with new students.  Lots of exciting things but little time for extras.

But the newest and most exciting thing to happen in our house since sliced bread is ... THE red light!!! That would be infrared sauna therapy.  Basically you shine several chick brooder lights on your bare skin and it promotes detoxification.  It also promotes blood circulation to the area on which it shines--which is a huge plus for A.

We saw dramatic improvements in A head shape after shining it on her for just ten minutes.  We do several five minute sessions daily.

We've also started her on a supplement protocol, which is less successful because it's just hard to get the huge amount of supplements in here in the morning and at night.  Which is no excuse really.

Overall, I think we've come to the conclusion that we are not opting for surgery at this point and will continue with alternative methods of healing.

Keep prayin' y'all!

Friday, May 31, 2013

A Plateau

So, it's been a little while between appointments for A and we have some good but bad news.

A has reached a plateau--meaning her body is in alignment but her suture is not coming unstuck.  The CT scan still needs to be sent to our chiropractor so that he can have more information about the fusing of the suture.

We did get A's hair analysis back though.  Yuck.  It seems that she is full of heavy metals and we're guessing that is the hold up with the "un-sticking" of the suture.  We'll be starting a supplement protocol for her as soon as her supplements get here (read: I wish that was yesterday!).

Please continue to pray for us!  I think we've gotten into the hard part of the journey.

Thursday, May 23, 2013

Nutritional "Stuff"

I just completed a certification in Nutritional Balancing and wanted to write a post about nutrition and birth defects.

Craniosynostosis is considered a birth defect and birth defects are usually caused by a lack of zinc in the mother.  I will confirm for you based on how I feel that zinc is lacking, but I recently sent away hair samples for both A and myself.  I'm interested to see what sort of patterns show up on the test.

We'll also be starting infrared sauna therapy (http://www.drlwilson.com/ARTICLES/HEAT%20LAMP.htm) on her ridge.  Sauna therapy has been amazing;y healing for our family and we're hoping that it will assist the healing process.

I will make sure to post an update on birth defects, nutritional balancing and the like when our results come in.

Nursing & Craniosynostosis

Nursing can be trying enough without any extra issues.  A misshapen head is an extra issue.

Dear mother who is nursing a baby with craniosynostosis ... YOU CAN DO IT!  My experience with A has been that her latch is shoddy, at best.  Her incessant amount of clicking (indicating a poor latch or thrush) led me all over the internet and into the arms of a decent lactation consultant.  Though we found out A had posterior tongue tie, having it clipped barely touched the problem.

And so, we come to chiropractics.  As soon as we had a chiropractor start working on her head, her latch improved.  The chiropractor we met with in MD had been trained by Dr. Carol Phillips in cranio sacral work and she was an amazing help with our nursing issues.  Unfortunately, when we missed two weeks of appointments while moving to PA, I became painfully aware of how frustrating nursing issues in the exclusively breatsfed baby can be.

Now that our chiropractor is working on A's head, her nursing is wildly better but also temperamental surrounding appointments.  Monday's appointment, for example, was really solid but she's been clicking a lot this week and grabbing my chest like she's falling out of my lap.  I'm hoping today's appointment will adjust that slightly :)

Saturday, May 18, 2013

Appointment #3

Can I give a big WOOOOOOHOOOOOOO!

Appointment #3 was awesome!  Maybe I'm just excited to keep seeing changes but I think this was the best appointment yet.  A's frontal bone (think forehead) made some great progress up and out.  She actually has a forehead now instead of the strange pinched look she had before.  The top of her head is much more rounded and I think there is a slight softening in the ridge along the top of her head.  Maybe I'm delusional, but maybe I'm not ...

Dr. J also did some work with the maxilo-facial bones, which gave her face a fuller "baby" look.

Finally, Dr. J suggested that I rub A's big toe as it's a trigger point in reflexology for the head.  I'm not sure about reflexology at this point but since I've seen so much positive from our chiropractic, I think I'll blindly follow on this one.

I am super excited for Monday's appointment and will report in then.

Thursday, May 16, 2013

A New Update

I know this is being posted back to back, but a lot happened between our diagnosis and now ...  it would be rather confusing to have to all in one post.

Anyhow,  A has had two appointments with Dr. J.  The goal of KST Technique is to remove the blockages in the body that are keeping the body from healing naturally.

At our first appointment, Dr. J asked all sorts of questions about my pregnancy, labor and delivery.  First, A was "stuck" in my pelvis for about five months of the pregnancy.  A good chiropractor would have been able to un-stick her, had I know to ask but alas, the chiropractic care I was receiving seems to have been sub-par.  So sad.

Secondly, it seems that a child's head will collapse on itself and then "pop" out again when it is being delivered.  The cranial bones will shift to be as small as possible and then return to the correct shape.  Amazing!  Anyway, it seems like A's head did not shift to come easily through the birth canal--hence the massive number of stitches.

After our first appointment, A's head showed significant change in the temporal bones (above the ears).  Before the appointment, they were flat against the head and after the appointment they bulged out over the ears, which definitely looked funny.  After our second appointment, the frontal bones began to bulge out as well.  We have another appointment tomorrow morning.

Dr. J informed us at the start that we're looking to slowly unlock the sutures in the order her body is ready to unlock them.  Slowly, we're hoping to unlock all of the sutures in the head so that the sagittal suture (along the top of the head) will be able to move freely.

Finally, we are Catholic and we're praying for the intercession of blessed John Paul II to "un-stick" A's saggital suture so that she can avoid surgery.  John Paul the Great, pray for us!

Wednesday, May 15, 2013

Our Diagnosis

This blog chronicle's our attempt at the non-surgical treatment of Sagittal Craniosynostosis.

Our second daughter, A was born on January 16, 2013 in MD.  We're the "crunchy" type, I guess, so we went as natural as we could.  After only 2 hours in labor and 13 minutes in the birth center our lovely bundle was born.  She was beautiful and perfectly warm and velvety .... and she had manged to cause a bit of damage!  An hour and a half and about 50 stitches, or so, later, I was good to go.  Remember the stitches--they play into the story later.

After two meetings with a pediatrician, we decided we would prefer a different pediatrician.  Unfortunately it took about five weeks to get an appointment with her.  In that period of time, we found out our rental had mold and we had to move.  Whomp. Whomp.  This is after having moved in only three months prior.  Needless to say, we weren't paying to much attention to any sort of developmental issues.  At our first pediatrician appointment with our new pediatrician, Dr. K, she suggested that the shape of A's head was concerning and scheduled a neurologist appointment for us.

At that point, I didn't understand what the appointment was for, or I would have recognized that a neurologist was not appropriate choice for us.   A neurosurgeon's office was where we belonged.  We ended up needing to cancel the neurologist appointment and then, much to our surprise, we were asked to leave our intermediate housing arrangement quite suddenly and decided to return to PA where we had originally started our family.  If you're confused, don't worry .... we are too.

Anyhow, the Sunday after we had gotten settled in PA, I finally sat down to look up all of this "fused suture," "synostosis" business everyone kept harping about.  This image says it all ...

http://childrenshospital.org/az/Site2130/Images/Final_Cranio2.jpg

It was obvious to us that our daughter had Sagittal craniosynostosis.  The next day, Monday, April 22, I called every neurosurgeon that I could find.  Fortunately, we live only 40 minutes from Children's Hospital of Pittsburgh.  They also happened to have a cancellation that coming Wednesday, April 24.  How convenient!!  I booked the appointment and off we went.

We arrived early and were checked in promptly.  Two physician's assistants checked over A and then met with the neurosurgeon, who diagnosed A with Sagittal Craniosynostosis.  That would mean that the top suture on her head is fused closed and eventually her head will grow to be hot dog shaped.  There is also about a 15% chance that she will have developmental delays, though many doctors disagree over whether that's caused by the fusing or just something that is metabolic/DNA related to having fusing.  This is my favorite link about craniosynostosis:  http://www.childrenshospital.org/az/Site2130/mainpageS2130P0.html 

Now, I appreciate allopathic medicine (http://en.wikipedia.org/wiki/Allopathic_medicine) and they are fabulous at treating serious issues but allopathic medicine is not the end all be all of the medical world.  Both of our girls had been seeing a chiropractor who also used cranio sacral therapy in their practice.  She had learned from Dr. Carol Phillips (http://dynamicbodybalancing.com), who is a wonderful resource.  When I informed our neurosurgeon that we had been seeing a chiropractor to see if it might help with the fusing, he laughed in my face.  I don't appreciate being laughed at--particularly to my face.

So, there we found ourselves, with a diagnosis of Sagittal Craniosynostosis (confirmed by a later CT scan) and a neurosurgeon who gave us only one option.  Surgery.

Surgery involves cutting open the skull and cutting out the fused suture.  It is least invasive before the 8 week mark, though few people catch it by then.  It is also considered less invasive before the six month mark.  We are fortunately only at the four month mark, so we're taking our time to explore our options.

Immediately, I contacted Dr. Phillips, Dr. Wilson (www.drlwilson.com), whom I highly respect when it comes to naturally healing the body through nutrition and another chiropractor.  Both Dr. Phillips and Dr. Wilson suggested that the suture can be "un-stuck" through chiropractic and cranio sacral work along with nutritional balancing.  The other chiropractor suggested strongly that this is a surgical matter only.

Dr. Phillips was so helpful as to try to locate a cranio sacral therapist in the area.  Unfortunately, she could not find anyone, so she suggested I call every chiropractor in our area.  Funnily, there are about fifty chiropractors in our small town alone, so I had plenty of options.  After writing down my list and calling about ten of them, I found two that could help me.

In the process of my calling, I learned that cranio sacral technique is actually massage therapy, of sorts, and that I should call massage therapists to find one.  In the meantime though, I also found another technique called KST Technique (http://www.teddkorenseminars.com/).  Two separate chiropractors were recommended and I promptly scheduled appointments with both of them.

Our choice was obvious after the two appointments and we had an intake appointment within the week!  We have had two appointments so far with good results.  I will continue to post and we'll see if we can successfully avoid surgery.