Honestly

I know, I know.  I have not made our official "Cranio Surgery" post.  I've had a hard time writing it, honestly.  This last surgery, the recovery and the entire past two weeks have been some of the most difficult times of my life.  I'm doing them.  I'm living them.  We are hanging in there, but boy oh boy, are they hard.   I seriously feel like I've had to "check out" of my head for a while, just to survive.  I tell myself things aren't so bad and that Jayson is doing so well!  But as soon as I have a moment to myself, reality smacks me in the face and reminds me that there is a big part of our lives right now that is so unnatural, so horrific, and completely traumatizing.

Honestly

Jayson is doing quite well.  Remarkably well.  Most people would have no idea he just had a major cranio surgery two weeks ago.  Everything with surgery has gone according to plan!  No surgical issues, no healing issues, nothing!  He is sleeping well, eating some oral feeds, playing, signing/communicating and YES, even WALKING!!!!  He blows me away.  Jayson can seriously do anything, and with a smile on his face.  He amazes me more and more each day.

Honestly

He is in a lot of pain.  They said he wouldn't be.  And I think this is the hardest thing for me.  My son does not show pain.  He very very seldom cries, and his cry is nothing like a typical child crying.  He never once cried in the hospital during recovery, for example.  We knew he was in pain because of his high heart rate, his squirminess, his respiratory rate, and his breath holding/lack of breathing.  But at home, he showed he was in pain.  I'm not sure if this could potentially be a good thing!  It is healthy and "normal" to be upset when you are in pain.  So maybe the fusiness, the complaining, the crying, and the silent tears are really a blessing?  But for me, each tear cuts into my mommy chest and leaves a gaping wound.  I hate that my baby hurts.  He has suffered more than any human ever should.  I wish so much I could take it from him, or communicate with him and let him know it won't be like this forever... but I can't.  Because honestly, it might be. And he just doesn't understand.

Honestly

I thought things would change and improve quickly and immediately, just like after Chiari Decompression surgery.  But progress has been slow, and that's okay.  We are slowly adjusting the space in his skull.  It will take time to truly remove pressure, and then the brain has to decide whether or not to move and fill its extra space.  But I really thought J's seizures were caused by the pressure.  I hoped they were.  I hoped that even a slight change in pressure would perk his little brain right up and the seizures would stop.... forever.   But, they didn't.  They were bad in the hospital.  We are thinking they are the culprit that made him stop breathing 6 times one night in the hospital.  And yesterday, Jayson had at least a dozen seizures.  They were bad ones, and made him cry and scream out and jerk and hit his poor sore head.  I was holding him during one of his seizures and he jerked super hard, and somehow his distractor out of his head caught on my sweater and pulled as he jerked.  Poor poor poor baby.  And he's likely seizing right now in his sleep beside me, as he is groaning and jerking.  I hate seizures.   I hate them.  I really really hate them, and they may not be going away.

Honestly

I'm proud of myself.  I have done some very difficult things the past 2 1/2 weeks.  Extremely difficult things.  I knew I could do it because I had no other option, but I'm holding it together suprisinly well. I have learned to go to another place in my head, almost check out.  I've turned into kind of an avoider the past couple of weeks, but it's a survival tactic.  My son has a ginormous scar from ear to ear.  He has two open oozing wounds caused from pressure points in the back of his head.  He had two metal rods extending out of the front of his head, with skin wounds that bleed and discharge throughout the day.  Quite honestly, it's remarkable I haven't completely lost it and that I manage to take care of my boy and my family without collapsing mentally, emotionally and physically.

Honestly

This is hard.  Damn hard.  And I'm not strong enough.  You know that saying, "God doesn't give you more than you can handle?"  False.  Completely false.  There is a popular blog post that I like about this very topic.  I guarantee that God has given me way more than I can handle.  I am barely hanging on.  This isn't living.  This isn't thriving.  This is hardly surviving.  And I'm merely surviving, thanks only to God's grace and His love for my family.  He is giving me the strength to get through this, but I am not strong enough.  I am suffering from quite extensive PTSD from Jayson's chiari surgery, the lack of care he received several times that first year in the hospital and how he similarly was neglected by many doctors who didn't see this new condition years ago, the fact that he stopped breathing several times in the hospital on my watch in the middle of the night two weeks ago and would not breath in or respond to stimulation much like the 3 times he stopped breathing that first year of his life, and the simple fact that it is once again winter season and we are shut-ins.  I am not happy.  I am not well.  I just simply am.  I have to hold my child down twice/three times a day and listen to him scream while my husband turns his distractors.  I have to witness my child flinch any time someone gets near him because he's afraid they are going to hurt him.  I have to clean all of my son's healing and open wounds twice a day.  This also requires me to hold him down, use gauze, Qtips and hydrogen peroxide to clean his wounds, and then put antibiotic ointment all over each wound as he shudders, fights and screams out with each touch.  I have to stare at the wounds, and smell the discharge and dried blood every time my precious boy sits on my lap or wants to cuddle with his mom.  I live my life with waves of nausea combined with a pit in my stomach that aches any time I see, hear, or think of the horror my child is going through.  I witness the huge strain on the relationship between my son and his daddy because he can't understand why his daddy keeps holding him down, turns the rods and in his head, causes him pain and doesn't respond to his clear cues that he doesn't want to do this anymore.  This is my life.  And I know it is just temporary, but it is hell.

Honestly

I worry a lot.  I worry that the pain won't get better, or that the space in his skull isn't enough.  I worry that this surgery and the associated care and pain will cause lasting emotional damage.  I worry things will never be the same again.  I worry that things won't change for the better.  I worry that we may have to do this surgery again one day.  I worry that other major health concerns could be missed, just as this one was.  I worry that it might take me a long time to recover from all of this, just as it will for Jayson.

Honestly

I have not allowed myself to acknowlege how difficult this has been.  Not at all.  I haven't talked about it with anyone.  I'm fearful that my confession would imply ingratitude.  I do not want God, nor anyone, to get the idea that I am not grateful every minute of every day that my son is here and is doing so well.  We discovered a life threatening condition, one that was greatly affecting his life and his development.  There is treatment for this condition, and surgery went incredibly well.  I have so very much to be thankful for, and truly my heart is full of gratitude.  I would not change any of this, because it is for the good of my son.  But tonight, I felt like I needed to be a little transparent and honest.  I am grateful, but I am suffering because my son is suffering.

Honestly

I know I will be okay.  I have been through other hard things, and I came out okay.  Not without a lot of scars, but I was okay.  I hope one day to be more than okay, but for now being okay is good enough.  And I think Jayson will be okay.  He is in pain.  He is experiencing high anxiety, fear and confusion.  But I really think deep down he understands we are doing this because we love him. There is no other way any of us would get through this.  Love, faith, and God are getting us through.  And one day this will be a memory, a horrific one, and we will realize that we all came out okay.

Please continue your thoughts, prayers and encouragement.  They give me strength and perspective.  We are truly blessed beyond measure to have our angel son and so many friends and family members who love and support us.  I honestly don't know how we would get through this without you.  Thank you.

Much love <3

Professor Plum~ In the Conservatory~With the Knife

As I've been researching Jayson's new diagnosis and our different treatment options and surgeons, there were many times I felt like this was like a game of Clue.  

Who would do it?  

Where would it be done?  

With which method or tool?  

There is one thing I will say definitely sets our situation apart from a game... There was no roll of the dice in this decision making process.  Our decision was very, very, very carefully made.  My husband, family, friends and I poured hours of research, tears, and time on our knees in prayer to make this decision.  I even read a Plastic Surgery medical text book and dozens of research articles!!  So pick your cards and place them in the confidential envelope.  Drum roll please....

WHO:
Dr. S (our original craniofacial surgeon) and Dr. K (a different neurosurgeon)

{furthermore known as Dr. Suit Jacket and Dr. Canuk}

WHERE:

in the Operating Room at Primary Children's Hospital in Salt Lake City

WITH WHICH METHOD:

with the Posterior Vault Distraction method (aka with the rods out the head)

and when????

to be done

THIS THURSDAY, NOVEMBER 13, 2014

Surprised?  I'm sure some are, and maybe some aren't.  This decision was definitely not made based on what Mike and I feel most comfortable with.  It was truly based on what is best for JAYSON.  I would much rather have Jayson get his surgery done and over with in the operating room, and just come home and let me snuggle him back to health.  I would rather NOT have to have rods sticking out of his head that make me vomit every time I look at them and I really don't want to have to adjust them and cause him pain.  But I will do whatever I have to for my son, including this.

Let me explain what I learned in my research in comparing the Posterior Vault Distraction (PVD) surgery and the Cranial Vault Expansion (CVE, also known as CVR) surgery and why this decision became quite easy once we looked at the facts.  

We chose PVD because

1.  PVD slowly stretches the skull and skin over the course of a couple of months leaving no or very few holes in the skull that would need to be filled later. The skull is stretched 1 mm each day for 2-3 weeks, and the skull slowly fills in with soft bone.  After the 2-3 weeks, the distraction rods are taken off and the skull is allowed to harden before the entire distraction devices are removed from his skull.  The other CVE procedure tends to leave lots of holes because the expansion is immediate instead of slowly over time.  They holes cause pain and problems and likely would need to be filled at some time.

2.  PVD provides up to an INCH of extra room, with an increase of 30-40% space in the skull. This means a small likelihood of needing another surgery to expand the skull. The other CVE procedure provides a max of 1cm per surgery, often requiring multiple CVE surgeries in the next 10 years

3.  PVD has a lower morbitidy percentage. Less deaths sounds good to me

4.  PVD has less blood loss and a quicker procedure, leading to less deaths

5.  PVD is less invasive. 

6.  PVD has more permanent results. There is little to no chance of the skull sliding back into its old place because it is stretching and filling in slowly over time. The CVE procedure has a higher percentage of sliding back into place when it is done at the rear of the head. As the child sleeps, the pressure on that part of the skull can push and slide it into its old position.

7.  The Cranio surgeon cuts open scalp from ear to ear in a zigzag pattern. Neurosurgeon cuts the skull along that same line, but straight. A little distraction device is screwed into the skull on each side. It reminds me of a door hinge, screws on each side of the divided skull. The the distraction rods are connected to the hinges and the skin is sewed up around them. Not very much exposure to the brain. The dura (covering) of the brain is not cut and the brain is not exposed.  The other CVE procedure involves the same cutting, but then removing and reshaping the skull, then creating a gap and securing it with a plate, pins or wire leaving a portion of the brain unprotected by the skull until the skull starts to grow and eventually fuse together. This fusion process often leaves holes mentioned above.  

Once we selected Posterior Vault Distraction, the doctor selection process became somewhat easy.  Distraction HAS to be done locally because Jayson will require weekly checkups and frequent x-rays with the rods in his head.  Dr. F in Dallas and Dr. S who was trained by him in Dallas (Dr. cat skinner) only do Cranial Vault Expansion surgeries.  Dr. Suit Jacket, our original craniofacial doctor, missed a lot, didn't want the CT scan, and screwed up BUT he is the best plastic surgeon at our hospital.  I wanted to give him a chance to redeem himself at the meeting we were holding today, Tuesday, with a different neurosurgeon, Dr. Canuck.  And he did.  There was no apology.  No ooops.  No explanation.  But he and the neurosurgeon were dead set on doing this and doing it well.  They seemed very comfortable with the procedure and easily answered all of my questions.  They spent over an hour with us answering my list of over 40 questions. :)  (Hey, what can I say, I'm a thorough mom especially when they cut my son's head open.)  Here are some pictures of what is going to happen and a list of my questions and the answers they gave me.  I'm sure many of our friends and family have similar questions.

The distractor that will connect to the skull on each side

Skull A is before, Skull B is after the cut and the distractor is put into place

Over 2-3 weeks the distractors will stretch the skin and separate the the two parts of the skull.  Soft bone will fill in as it slowly separates.  The distraction rods coming outside of his head will then be removed while the distraction device stays for 3-4 months while the soft bone hardens.

X-ray image of distractors

Pictures of a baby a couple of days after surgery on the left, and a few weeks out on the right.  The silver part you can see is the distraction rod.  You can see it's shorter on the right because it's further in her head stretching.  You can see the head is completely shaved, and a zig zag cut is made and stitched from ear to ear.

Questions:


DISTRACTION DEVICE

• Brand- Synthes
• Springs- No springs
• Amount of space- up to 40% more
• Internal vs. External distractors- Internal
• How many rods? 2
• Device thickness- 2
• How long will rods be in? 2-3 weeks
• When will distraction device be taken out of skull?- 3-4 months
• Likelihood of an allergic reaction- very possible with Jayson.  Plan in place.
• Rod Removal How and When- after 2-3 weeks in clinic
• Device Removal How and When- after 3-4 months, another inpatient surgery, 1-2 days in hospital
• When does adjustment begin and end- begins 3 days after placement surgery, ends 2-3 weeks after placement surgery
• Possible device complications- infection risks, device is not rigid; it's flexible. No device complications at our hospital in past 2 years
• Risks of Infection (superficial or internal)- Superficial risks, treated with hydrogen peroxide and antibiotic cream daily.  No known internal infections at our hospital in past 2 years
• O2 cannula or CPAP use at home (mask will touch incision sites and possibly distractors)- should be fine to just use O2, we will revisit this in the ICU
• Cleaning and Bathing- distractor site will be cleaned with Hydrogen Peroxide and antibiotic cream daily

SURGERY

• Suture brand and type- we will use the ones Jayson is not allergic to that we used in his Chiari wound correction surgery
• What is their experience with multiple suture cranionsynostosis- they say it is a common condition that they treat at our hospital and they have been doing distractions for two years.  They claim multiple suture cranio is not as rare as the literature says, and they see and treat it frequently
• Number of days and nights in ICU and in hospital- 1 night 2 days in PICU, another 2 days and nights in neurotrauma unit
• Length of surgery- 2.5-3 hours, he will likely be in OR 4+ hours
• Procedure for blood loss- bags of blood (Jayson's type) will be in OR ready for transfusion.  Blood transfusions are needed in 33-50% of these surgeries
• Pain and pain management- will be monitored in PICU and on the floor- I will follow up with this question more on Thursday
• Will pressure be measured before or during surgery?  Yes, an ophthalmologist will measure his intracranial pressure before they begin the surgery in the OR to have a baseline
• Chance of inpatient genetic testing- we will have a genetic consult inpatient and push for approval of whole exome sequencing during this time
• Surgery risks- blood loss, low risks because brain and dura are not being touched

Long-Term Follow Up and Care

• Follow up for rods and devices- weekly check ups, x-ray after 2 weeks
• Follow up after device removal- clinical appointments every 6-12 months
• Pain and Pain Management at home- stretching process doesn't seem to be too painful, easily managed with Tylenol and Motrin
• Changes to long term care involving docs, meds, appointments, imaging- need to follow up on this question during rounds
• Precautions for activity with rods- hard to limit toddler activity, encouraged me to get in touch with other parents to see how to keep J from touching or messing with the distractor rods
• Visitor Restrictions- none ordered, use caution

Other Questions

• Does Jayson seem to fit any of the multiple suture craniosynostosis syndromes (Crouzon, Apert, Pfeffer)- no, but he may be in that family of syndromes
• Is the scalloping or erosion to the skull problematic to the skull- no, skull is durable
• Could this craniosynostosis cause brain damage- yes, if the intracranial pressure was high for a long period of time
• Could the brain damage be reversed- if the damage wasn't actually permanent and it was temporary due to the pressure in the brain, yes it's possible
• How long until his brain moves back into the space created- pretty immediately if it's been compressed.  There will likely be extra space and that is to accommodate future growth
• How will this surgery affect his chiari- it may help and give him more space
• Does the fact he's had decompression surgery complicate this posterior surgery at all- no, it is done slightly higher in the skull from where his skull was removed

So that's it.  That's our decision and we feel good about it.  Well, about as good as one couple can feel when their baby is having his head cut open for the THIRD time.  Please pray and send positive thoughts our way---hope and pray that Jayson will do well through surgery, that his doctors will know what to do, that pain will be as minimal as possible, that we won't experience complications, and that this procedure helps Jayson as much as possible.  That truly is the thing that is keeping us going--HOPE.  Jayson is doing well now... imagine how well he will be doing when his brain is free from pressure!!!!  We are trying to stay hopeful....hopeful of many more miracles to come.  Thank you for hoping and praying with us. We truly feel your strength.

And lastly, WEAR YOUR PURPLE ON THURSDAY!  Purple is the color for epilepsy, Chiari AND Craniosynostis!  Coincidence?  Maybe.  But probably not.  :)  Be sure to tag me in your pics of purple showing your support for Little J!  Love you all.

From Jayson

Hey guys!  Jayson here.  I've had a rough week.  I've had to keep myself entertained while my mom researches head stuff on the computer.  I've been busy giving her lots of hugs because her face has been so sad.  Mommy says my brain is squished and she's worried.  I'm not worried.  I'm brave!

And I'm strong.

And I don't let anything stand in my way.


Because, let's think about it...

My brain may be squished, but I still can

My brain may be squished, but I still can

My brain may be squished, but I still can

My brain may be squished, but I still can

My brain may be squished, but I still can

Don't worry friends.  I am tough.  I am brave.  I can do anything.  I am a superhero. I never give up.

If I can do all of these things with pressure in my head, imagine all that I will be able to do after surgery.

Thank you for your encouragement and always believing in me.

Love,

Jayson

I'm Only Human

I feel this song is very appropriate to my situation right now.

I'm only human.  I bleed when I fall down.  I crash and I break down.  I can be a good machine.  I can hold the weight of worlds if that is what you need; be your everything.  I can do it.  I will get through it.

But

I can take so much, til I've had enough.

There are some words that are knives in my heart right now.  Not just the words of the new diagnosis, but also really simple words of criticism.  Just as a warning-- I'm super fragile.  Please be kind with your words and refrain from judging me at this emotional time.  I am a very open person.  I vent when I'm upset.  I ask questions when I'm confused.  I cry when I'm sad and I yell when I'm mad.  And I am doing this all very openly right now on my blog and on the world of Facebook.  Be kind, be patient, be understanding.  I am not blaming anyone.  I am not bashing anyone.  I am not praising anyone either.  I'm just being real, and I'm letting myself go through my emotions.  I invite you to be a part of that journey with me, but in participating I ask that you refrain from judgment.  Until you truly have walked in my shoes, you honestly have no idea what I am going through mentally, physically, emotionally and spiritually.


That being said, how about an update?


Quick Summary:  We got a call from our craniofacial doc today who says there is no need to do more tests.  We have all the evidence we need to move forward with surgery.  I'm thrilled Jayson does not need to go through any invasive procedures!  I have an appointment with our current cranio doc and a new neurosurgeon on Tuesday. (Our current neurosurgeon has asked to be excused from Jayson's care.  This is heartbreaking and confusing, but I will look into this later).  Additionally I met with another craniofacial surgeon today for a second opinion.  Also, I have been in contact with another craniofacial doctor via email who is the head of a specialized Craniofacial Clinic in Dallas, Texas.  We are looking very closely at these three doctors/surgeons, their strengths, their approach, and their follow up.

We have really 2-3 options right now and we will need some time to think about the pros and cons, and pray about which is right.

1.  Our current craniofacial doc with a neurosurgeon at Primary Children's wants to do what is called a  Posterior Vault Distraction.  In this process a metal device is placed into the skull and J is stitched up with a couple of bolts sticking out of his head. After a short hospital stay, J would come home and for 2 weeks Mike and I would adjust these bolts so that they slowly stretch his skull and skin.  He would then have to leave the device in for a couple of months to let things set, then go back into the OR to have it removed.  It will allow for up to 30% more space and the likelihood of more surgeries is low.  However, there is a good chance of infection to the bone and brain which is really scary.  Good and bad.

 Imagine this, only in the back of the head.

This team has a lot of experience, comes highly recommended by our Comprehensive Care doctor (who I respect very much).  They are also local, Personally, I have a hard time with the idea of working with this team since this cranio doc went years without diagnosing Jayson, dismissed us when we came to him 2 weeks ago asking for a CT scan, told us Jayson didn't have cranio, said he'd call with CT results and didn't, and then pointed blame at me yesterday in a phone call asking why I hadn't had Jayson in the OR for an eye exam in the past.  Um... I didn't know I should have, because no one thought Jayson had cranio.  So yeah, I'm going to listen to what they have to say but I'm not crazy about this team due to their negligence with Jayson.  I will meet with this team on Tuesday to discuss details about surgery, and schedule it if we decide to go with this team.

2.  I joined a couple of cranio support groups over the past 48 hours.  There were countless suggestions that we see Dr. F in Dallas, Texas.  He specializes in craniofacial, directs his own clinic, has many awards and recognitions, has fabulous bedside manner, isn't about the almighty dollar, willing to consult via web and phone, and willing to offer free consult before surgery.  Everywhere on the web we has 5 star ratings and not a single bad comment.  He commonly deals with Multiple Suture Craniosynostosis and very rare, complex kids.  90% of his patients are from out of the area and state.  He does not like the Posterior Vault Distraction approach due the risks of infection.  He prefers Cranial Vault Expansion which is taking the skull and pulling it apart and out about 1 cm (at the most) and stitching things back up.  The skull slowly starts to fuse back to itself, but can often leave holes if the child is over 12 months.  Often times these holes need to be filled back up.  This is also usually a more temporary fix and more surgeries are basically inevitable since you can only add less than 1 cm of space at a time.  This is because the scalp still needs to fit over the skull to sew up.  In the other approach, the skull and skin are slowly stretched so more space can be made.  The benefits of this approach include that it is done in the OR and we don't to have to maintain protruding rods out of Jayon's head nor tighten them on a daily basis.  The risks of infection are lower and the doctor explained that Jayson's brain may or may not move and spread out to fill that extra space anyway.  So if his brain chooses not to move and spread out once either procedure is done, it doesn't matter if we made 1cm or 3cm of space.  In that case, another part of the skull may need to be opened up to make room in another surgery.  This doctor asks that we send him our medical records, then we'll schedule an appointment a couple of weeks out to see him in the clinic and then have surgery a day or two later.  He will only take us if our medical records show that this surgery is medically necessary, which they should.

Sort of the same as above, but imagine a pin or plate is used to make about 1 cm of room instead of an extended post out the skull.

We are very interested in having this doctor do the surgery.  He really is the best.  However, I haven't met him.  Dallas is a long ways away.  Having surgery there would be very difficult without support of our friends, family, and other doctors.  It may burn bridges or hurt feelings of our other doctors here to go somewhere else.  Also, it will be expensive.  Travel expenses, food expenses, lodging expenses, and out of network hospital expenses.  But ultimately, Mike and I are feeling strongly that we need to go to the doctor who has the most experience, and this guy is it.  We are leaning towards this option.

3.  I discovered that a craniofacial surgeon who studied under and worked with Dr. F in Dallas now works in Utah!  He works with Primary Childrens Hospital on select days and operates very much like Dr. F.  He, too, prefers the Cranial Vault Expansion approach and he has 10 years of experience.  I asked him if he has had a lot of experience with mutliple suture cranio surgeries and he said that Primary's has done a lot!  15 in the past 10 years.... lol  Yup, apparently 15 is a lot.  Guess this gives you an idea about how rare this type of craniosynostosis is.  This doctor operates very much like Dr. F and he is the one who explained the CT report and images to me, as well as the difference between the two types of surgeries.  He was really good to explain, show pictures and images and answer my questions.  He was also very enthusiastic, personable, and confident.  He learned from the best doctor and he performs 2-3 cranio surgeries a week.

I was not a huge fan of this doctor.  He was personable but almost to the point of lacking professionalism.  He had a car salesman approach and compared himself to our other cranio surgeon frequently.  He constantly explained how he was better and his approach was best, and subtly put down the other surgeon.  His way of talking about patients was almost humorous, but in a way disrespectful.  He referred to his patients as heads.  He'd say things like, I do a lotta heads.  Had three heads last week.  Hey nurse, grab me that picture of that head we did last week.  He was referring to the patient, not just the head.  He also said a few times, "Well there are many ways to skin a cat, either way, you're still skinning the cat."  This almost made me laugh.  This catchphrase is not my favorite anyway, but used in the context of actually talking about removing the skin and skull from a child was both funny and inappropriate.  He pushed so hard to sell himself that I wondered why he needed to work so hard?  Is he pushing for more patients?  Is he needing more patients for his research?  Does he want to test his methods so he is trying to get us on board? Or maybe, he's just really excited and confident?  I don't know, but I gotta think about this guy.  If I was 100% confident in his abilities to treat my son, it wouldn't matter how quirky he was.  I'd have him do Jayson's surgery. But I'm still undecided.

So that's where we are.  Again, please realize I'm not trash talking anyone.  I'm just being real about my feelings and my experiences.  Any one of these three doctors could very well be cutting open my son's skull, so I do not think any of them are bad doctors or incapable human beings.  They all have their strengths and their weaknesses.  I just wish they didn't ;)

I had a friend message me today and ask how I was feeling, REALLY.  I thought of this analogy:

I feel like I'm stranded in the middle of the ocean, just doggy paddling trying to stay alive.  I have some life vests thrown at me.  However, I'm so overwhelmed with the fact that I'm drowning I can't logically pick which of the life vests I want.  None of the life vests seem appealing because I just keep thinking about how much it sucks that I'm stuck in the middle of the ocean.  I'm tired, angry, confused, and overwhelmed.  All of the life vests are a life-saving option, but my brain can't decipher which is best even though any would be much better than none.  All I can think about is how much I wish I wasn't drowning.

That is where I'm at right now.  I don't think I'm ready to choose because I'm still so heartbroken that we are in this situation.  I haven't accepted it yet, but I think I'm getting there.  I just need a little time.  Luckily, we have it.  The doctor today said that Jayson's fusion of 5 sutures at his age is one of the most complex situations he's seen. But clinically, Jayson is doing so well.  The doctor does not feel this is a super urgent situation.  We can take our time and carefully select the best option and the best doctor for Jayson.  He's in pain, and Intracranial Pressure is dangerous, so it's urgent, but not an emergency.  We can cautiously look at our options, and make a decision.  And if all else fails....

Anger. Fear. Worry. Anger. Desperation. Heartache. And a lot of Anger.

Well folks, it seems things are going to get really hard again.  My brain cannot even begin to process what is happening.  I can't believe we're doing this again.  I feel we've paid our dues, my son has suffered enough.  Why would he have to suffer more????

Dr. B, our neurosurgeon, did NOT read the CT report at our appointment last week.  He just scanned through some images on his mouse and said it looked like things were fused and we would need to see Dr. S, the craniofacial specialist, again.  See the last blogpost for details: Too Much Brain to Contain

Well last night Jayson's eye movements were crazy.  They had been escalating for the past 2 1/2 weeks, and I mentioned it to all of our doctors.  They carefully noted it down, but left it at that.  I noticed after several video tapes I made of Jayson's eye movements last night that I had been focused on the inward pulling and increased nystagmus of Jayson's LEFT eye.  This distracted me from the real concern-- his RIGHT eye.  Jayson has Duane Syndrome in his right eye.  It shoots up when he uses it to look left and it doesn't look right of midline.  Lately, it has few movements at all.  I sat and compared this video to past videos I have taken of Jayson and his eyes to see that his right eye still had some movement from side to side.  Not anymore.  The left eye is moving so much to compensate, but I think my son's vision in his right eye is greatly affected right now.  The thing about Duane Syndrome is that it is congenital and unchanging.  It is caused by damage on the 6th cranial nerve.  When there are further changes to the eye movements with Duane Syndrome it is due to pressure on that 6th cranial nerve... namely, Intracranial Pressure.  Did you just cuss out loud??  Me too.  Shit is right.

So then I realized that Dr. S has yet to call us to discuss the CT results.  Dr. B mentioned there was some fusing, but I really didn't know what that meant beyond that.  It had been a week since the CT scan and I got a crazy idea to look at the results myself.  After looking at the EEG results on my own I swore I would't do that again... but I couldn't help myself.  I was a worried mom, and I needed to know if it was worth making a bunch of phone calls the next day.  I never in my wildest dreams expected the results I read.  See for yourself.

Basically this report says that nearly every one of Jayson's sutures in his skull are fused.  To give you an idea of how many sutures we have and when they are supposed to fuse, see this chart:

Jayson's report said that his Metopic, Saggital and Coronal sutures were completely fused.  Parts of his Lambdoid were fused, and the Squamosal was not fused.  No mention of the others.  You can see that most of those sutures are not supposed to fuse until his 20's.  The report also mentioned scalloping in the inner table of the skull.  This means, permanent damage to the inner bony layer of the skull due to erosion.  How do things erode?  With liquid.  That is why the report suggests this is evidence of intracranial pressure, which leads me to believe there is extra fluid on his brain.

This is bad.  This is very very bad.

This could explain the symptoms I have been freaking out about for months:

• increased seizures
• new generalized seizures
• new eye movements
• headaches
• migraines
• rubbing his face, eyes and ears in pain
• sleeping problems- sleeping too much, and very interrupted sleep patterns
• dilation of one eye
• microcephaly
• pushing his head into surfaces to cause pressure-- thought to be "sensory"
• crying uncontrollably and rubbing his head
• random crying and fussing

Heartbreaking, right?  What is really heartbreaking is the road we are heading down...

I am waiting for calls back from docs and for the GO signal, but it looks like Jayson will be going under anesthesia very soon for a special eye exam that checks pressure.  Our cranio doc was under the impression we had already done that, apparently.  The cranio doc said he would call neurosurgery today to see if they would like to have a monitor placed. During this procedure, the neurosurgeon will drill into his skull and insert a monitor into one of J's ventricles which will measure pressure for 24 hours in the ICU.

What comes next is even more heartbreaking.  When there are more than 2 fused sutures it is called "Multiple Suture Craniosynostosis".  When this condition happens in a child with a syndrome it is called "Multiple Suture Syndromic Craniosynostosis".  It is recommended that surgery to open up and mold the skull happens before 12 months.  Clearly this is not the case for us.  This was missed by so many specialists it is beyond ridiculous.  Due to this fact, it is now a very complex, complicated process and my understanding is that it is repaired one suture at a time.  We may be looking at many, many skull and brain surgeries in Jayson's future.  When the skull has gone this long being fused, it causes many problems within the head--- eye placement, vision, ear placement, hearing, mouth and jaw alignment issues, swallowing, respiratory issues, etc.  Therefore, each skull surgery also tends to involve reconstruction of different facial features so that they can function properly.  No, I have not been told this is our road.  I just did research about Multiple Suture Syndromic Craniosynostosis and that is what I found.

And there is even more heartbreaking news.  Not all craniosynostosis results in intracranial pressure, but Multiple Suture Syndromic Craniosynostosis has an extremely high likelihood of intracranial pressure.  When it is not treated early on, typically before age 12 months, there is often short-term and long-term brain damage.   We will never know, but to think that maybe some of my son's brain damage could have been prevented had we been more proactive is seriously heartbreaking.

My boy is in pain.  He has pressure.  And his life is in jeopardy.  Intracranial pressure can cause increased seizures, brain damage, stroke and death.  It is nothing to mess with.  I am hoping and praying Jayson's pressure is not at a severe level and that perhaps we caught this in time before more permanent damage is made.  I am hoping and praying Jayson's doctors act quickly and we can get quick answers with the best plan for the best outcome for Jayson.  I also hope and pray I can keep my cool because I have never in my life experienced this level of anger and frustration.  My concerns for his microcephaly, head shape, seizures, and brain have been dismissed so many times and now we are in crisis mode.  Please keep my sweet boy in his prayers.  Please keep his doctors in your prayers.  Please pray for my and Mike's strength that we can go forward with faith and not crumble from the heartache.  Thank you for all of your love and support.  I will keep you updated.

Too Much Brain to Contain

I know we all have our problems... but Jayson's problems are extra special.  It's a known fact that every mom claims that her child is the smartest in the world.  I am not an exception to that rule.  My child is brilliant.  His brain is huge.  I've got the images to prove it :)  Okay, well his brain is typically sized, but it's his skull that is not big enough to contain his brain.  Either way you look at it, Jayson has......

We already addressed the problems in his brain stem by decompressing his Chiari Malformation in January of 2013.  During this process, Jayson's neurosurgeon Dr. B took out some of Jayons' brain tissue (brain tonsils), some of his skull, and some of his top vertebrae to make room for his brain.  The brain stem is responsible for important skills like swallowing and breathing.  Decompression surgery significantly helped Jayson.  Quite honestly, it saved his life.

But the battle isn't over.

There is still not enough room.

His brain stem is still tight, but the doctors don't think they could do any better if they went back in.  Jayson is just very small back in his brain stem area.  But the brain stem is no longer the only issue.

Jayson's head circumference is just barely over 45 centimeters.  That's small, folks.  That is off the charts small, and it has been 45 centimeters since he was about 8 months old.

It doesn't take a rocket scientist (or in this case, a brain surgeon) to figure out that it is not a good combination when the brain continues to grow, and the skull doesn't.  I may not be the sharpest tool in the shed, but I know that could be problematic.  Our geneticist was really concerned, so we were referred once again to our craniofacial specialist/surgeon.  He, however, was not concerned.

Right?  This was seriously my face.  Our conversation went a little something like this:

Dr. S:  What are we seeing you for today?
Me:  Jayson has seen you in the past and you told us to follow up a couple of years down the road, so here we are.  Also, our geneticist is really concerned about the fact that my son's head has not grown since he was 8 months old.  His microcephaly is off the charts.
Dr. S:  I see.  And so why are you here?
Me:  Well our geneticist suggests a 3D CT scan of his head.
Dr. S:  That's a lot of radiation.
Me:  Yes, I know.  But it seems like it may be necessary.
Dr. S:  Does he feel it's necessary?  Or is it you that feels it is necessary?
Me:  I don't know.  I'm not very knowledgeable in the medical field, so I'm sure my thoughts may be a little unfounded or ignorant.  But we know Jayson's MRI's have been normal so his brain is growing typically, but his skull is not growing.  I am thinking that could be problematic.  Perhaps that is causing his big increase in seizure activity and sleep problems.  But those are just my thoughts.
Dr. S:  Yes, that can be problematic. But I don't know that there is anything we should do about it.
Me:  Well is there a reason why his skull is so small?
Dr. S:  There are two reasons why his skull would be small.  Either his brain is small, so therefore his skull is small.  Or his sutures fused early.
Me:  Well, since we know his brain is normal sized, can't we then conclude that his sutures fused early?
Dr. S:  It's possible.
Me:  Well how would we know.
Dr. S:  Through a CT scan.
Me:  So isn't that a good reason to get the 3D CT scan?
Dr. S:  That's a lot of radiation.
Me: Yes, I'm aware of that, but it seems like there is a good reason to have it done.
Dr.  S:  Maybe, I'm not so sure.  That is a lot of radiation.
Me:  Well if his sutures fused early, is it causing pressure on the brain?
Dr. S:  It could be.  Has he had an eye exam?
Me:  What?  Yes.  I am not sure which eye exam you're talking about.  But yes, he's seen an ophthalmologist and had his eyes dilated for an exam.
Dr. S:  How did that go?
Me: ....... well...???.... he needs glasses.  He has nystagmus, strabismus and Duane syndrome in the right eye...
Dr.  S:  Sounds like his pressures were fine.
Me:  I didn't know they checked pressures?
Dr.  S:  If they didn't tell you about it everything was probably fine, so there probably isn't any pressure on his brain.
Me:  I have spoken with neurology, neurosurgery and ophthalmology about this, and no one has ever mentioned to me that we can tell the pressure in the brain by a simple eye exam.
Dr. S:  Yes, he is probably fine.  So what can I do for you?
Me:  Well, we were referred to you because of his microcephaly.  He has had increased seizures, headaches, migraines and sleep issues.  We wondered if it was from pressure on the brain.
Dr. S:  A lot of things can cause seizures, headaches and sleep issues.
Me:  Yes, I know.  We just wanted to rule this out... likely with a 3D CT scan.
Dr. S:  That's a lot of radiation.
Me: Yup.
Dr. S:.......................okay................. let me go get that order for you then...............  And I suggest you follow up with Dr. B.  I don't think you'll need to see me again.

Yup, that was it.  Painful, right?  And I wish I was lying or exaggerating... he really did mention the radiation concern THREE times.  So I got the order from him, set up an appointment with Dr. B, our neurosurgeon, and headed down to radiology to schedule J's CT scan.

The scheduling gods were watching over me, because we experienced a medical miracle.  I got the run around, was on hold several times, on the phone for over 20 minutes, and spoke with 5 different people, but I FINALLY got the okay to schedule our CT scan while Jayson was already under anesthesia the next week for a series of surgeries and procedures.  Let it be noted--->  I have YET to meet anyone else who has successfully scheduled a procedure in the OR followed by a procedure in the radiology department.  Radiology does not share or play nice with others at our hospital.  Like I said, the scheduling gods were watching over us!!

We got the scan successfully done on Monday, and we very very quickly went over it today.

Dr. B had an emergency surgery today, so he was an hour and a half late getting to our appointment, so our time was brief.  Like 5-7 minutes brief.  As he rushed in the door he said,  "Sounds like you have a lot of questions for me.  Jayson sure is a complex kid.  Let's see how quickly we can get through your concerns."  #1

We discussed Jayson's new eye movements, recent seizures, and headaches and migraines.

"And his seizures don't register on an EEG I see.  We just can't figure him out.  He's super complex." #2

We discussed Jayson's sleep issues, but also his big progression in skills lately.  No choking, no swallowing issues, no vomiting.

"That's the thing.  He doesn't always show us all the signs.  He can really be struggling in some areas and progressing in others.  He's hard.  He's one of my most complex patients."  #3

We went over Jayson's flex extension x-ray looking at his C1 ring.

"There's some movement there, for sure.  We don't like to see that, but we wouldn't want to go in and do anything about that right now.  So far, I think it's looking okay."

I asked if he would need to wear a neck collar to stabilize him, and he said not at this time.

We then looked at the CT images.  Like in fast motion.  As in he used the little wheel on the mouse to scroll through at a lightning speed.

"So regarding his skull, have you seen Dr. S?"

Me:  Yes, we just saw him last week and he told us to follow up with you, and that a follow up with him was not necessary.

"It's probably because Jayson is so complex... it's hard to know."  #4

"Well, let me show you a few things.  So things don't look too bad.  He's got some major flattening on one side of his skull.  And some other weird shapes in random places.  It's problematic because his brain is going to keep growing and it will fill in these spaces, and the shape of the skull will start to affect the shape of the brain, and cause pressure."

"And then we can see that the skull is closed.  It's fused.  It likely fused early.  His brain is still growing, but his skull cannot.  That's problematic.  That will likely cause pressure."

"I don't suggest we go in and do anything about it right now.  He's progressing well and seems to be doing pretty well considering.  Things look a little worse than the symptoms he's showing.  But Jayson is super complex.  (#5) He could surprise us and suddenly not be well.  I think we need to keep an eye on it, and I tell you what I'm going to recommend.  I think whenever you decide he is having a difficult time that we bring him into the ICU, I'll do a little incision in his head and we will place a little probe/sensor for 24 hours.  We watch him in the ICU and let him just do his thing, and it measures the pressure.  This will let us know if we need to do a shunt or a ____________ surgery"

At certain points, doctors say really really long words that I can't begin to repeat, let alone spell, and I miss the name entirely.  This is one of those cases.  I do know the surgery was a reconstructive skull surgery; an expansion surgery of sorts. Perhaps it was "Cranial Vault Expansion" surgery, but it seems I would have remembered that one. :)   Basically, I'm thinking of it as a skull expansion remodel so there is more room for Jayson's genius brain.

And basically that was it.  So now we wait and see.  Not the greatest of news, but I'm happy we don't have to do surgery now!  I'm also happy that we have a plan next time things go South and all of our doctors start scratching their heads.  Instead we will just call Dr. B and head to ICU to monitor the pressure in J's brain.  Sounds awful; sounds invasive; sounds like we have a plan and a possible explanation to some of Jayson's biggest issues.

And in case you didn't notice, we set a new record today.  In our brief 5-7 minute appointment (Yes, Dr. B talks FAST) our doctor said, "Jayson is complex" FIVE different times.  It's seriously gotten to a ridiculously funny level how often that phrase is used by all of Jayson's doctors on our team.  It's their catchphrase used to mean, "I have no flippin idea".  But I will be honest, Dr. B is our most confident, most arrogant doctor... and to hear insecurity in his voice today along with the five "complexes", I'm a little nervous....

So there you have it... Little J is complex.  But what else would you expect from a brilliant kiddo whose brain is too much to contain?!?!  I'll tell you what I expect...

A Parable

par·a·ble

ˈperəb(ə)l/

noun

1. a simple story used to illustrate a moral or spiritual lesson, as told by Jesus in the Gospels.  a succint, didactic story, in prose or verse, which illustrates one or more instructive lessons or principles.  A parable is a type of analogy.

I had a dream a week ago, that was actually more like a vision.  I was not completely asleep, and I had a special feeling before it happened which led me to believe I was about to have a spiritual experience.  I learned several lessons through this vision, that I believe was much like a parable.  I do not ever want to forget it; it was meant for me, and taught me much about my unique journey.  It can be interpreted in so many ways, and I think by writing it down it can continue to teach me throughout the years.  I also want to share it.  I got the impression as this vision was meant to share, that it might help others who are on a unique journey in a similar or different way.

I was in a valley with Mike and Jayson.  The valley did not have any buildings, cars, houses, or structures.  It reminded me of what the Salt Lake Valley might have looked hundreds of years ago as the pioneers were about to settle here.  We had wagons pulled by cattle and horses, and life was very simple.  The valley was green, plentiful and beautiful.  There were rivers and lakes, and the valley was surrounded by very tall, beautiful mountains.  There was a clear passageway through the mountains, almost like a canyon, but due to the curvature and length of the passage, it was impossible to see what was on the other side of the mountains.  

There were many people in the valley with their families and their wagons.  There were a few of us with stationary wagons, spread all over the valley.  Our animals were grazing, and we were all glowing with happiness.  All of the many many other families, however, were traveling very quickly.  They were following one after another in a line heading towards and through the canyon.  They had a destination in mind, and they were very intent on getting there.  Their wagons and animals moved quickly.  Mothers were dragging their children by the hands, telling them they must hurry to get to their destination.  Fathers were driving the wagons, urging the animals to keep the pace.  They, too, were happy, but rushed.  They kept looking forward, noticing others were ahead of them, and wanted to keep up.  They didn't want to be left behind, and they had a very important place to go.  

I spoke with several of the mothers, and I asked them why they were leaving this beautiful valley.  "It has everything you could need," I said.  "It is calm here, it is beautiful and peaceful, and life is simple.  Why would you want to go anywhere else?"  I was told that they were told of a great destination.  They weren't sure where it was, or how long the journey would be, or how they would know they arrived.  But they didn't want to be one of those left behind in the valley.  They wanted to keep moving forward.  If they weren't moving forward towards some destination, they were stagnant.  What kind of life would that be?  It was important to them to keep busy, to keep moving, and not to be left behind.  They said they were trying to find joy in the journey, but it was difficult because they had to keep moving.  There was little time to enjoy the beauty of the valley where they currently were at.  All they could think about was where they were headed, and how wonderful it would be.  

I was not able to move forward with them.  My wagon was stationary.  Part of me wondered what was on the other side of the mountains, through that passageway.  Part of me wondered what kind of happiness they might find there.  I saw all of them and their families traveling, and part of me longed to go with them.  I, too, did not want to be left behind.  But I had no choice.  So I looked around me, and saw the beauty of the valley, the colors in the mountains, the sparkling water, and the greenery that surrounded my family.  I saw other families who were also noticing all of the beauty.  There was an appreciation for the little things:  the grass, the trees, the lakes and rivers, the animals, the blue skies.  There was a focus on time with family, not the futures and opportunities that lie ahead for the family members.  I noticed the families in the valley were different, like mine.  Their children were different.  Their wagons were stationary too.  But our families seemed to be glowing and radiating with happiness.  Our lives were simple and slow paced, and our focus was on our families and what was happening NOW, not where we were headed in the future.  

We watched others speeding by and partly longed to be with them, but also party felt bad that they were not able to stop and enjoy all of the beauty around them.  They were not able to enjoy the moment they were in, because they were so focused on where they were headed.  They were so busy pulling their children along with them to some unknown destination that they were not enjoying time in the valley and all it had to offer them and their families.  I felt grateful my wagon was stationary.  I felt grateful we were living and loving every minute in the moment instead of rushing and heading towards an undefined destination.  We were finding joy in our current situation, and not taking for granted even a moment of precious, beautiful time with our families.  I knew my place was there in the valley.

The next part was religious, special and personal, so I do not want to share too much.  But I dreamed that Jesus Christ came, and the first place he came was the valley.  Christ stayed with us in the valley, and he held and comforted our children who had special needs.  He was not rushed to see the busy people; he spent time with us because we made time for him our lives by appreciating all of the small things, and enjoying all of our blessings in the moment we were in.  We may have been left behind, we may have been slow, our lives may have been different, but Christ visited the valley first, and spent time with our children.  It was in that moment, that those who were rushing towards the passageway started to be envious of those of us who were stationary.  They knew that they too would see Christ, but he stopped and spent time in the valley first.  They started to question where they were heading, what the rush was all about, and why the felt the drive to busily move forward.  They couldn't stop their journey, so they just silently admired the stagnant.  

And my vision ended.

A parable teaches a lesson, and often it can be interpreted in many ways. A parable can also be symbolic and may have many representations.  That is why I think this vision can be compared to a parable.  I think many who read it may interpret it differently, but I think that if I share it many might benefit from their own interpretation.  The valley, canyon, wagons, stagnant families and moving families might all have different representations.  Let me share with you my current interpretation:

Currently, I think those stagnant wagons and families in the valley represent my friends, those with special needs children.  They are stagnant because of their different challenges.  They can't leave the home often, they can't make great plans, they can't travel, and in many cases they can't ever move to a new place because of their ties to local doctors and hospitals.  They don't get date nights, they don't get time to attend religious events and ceremonies, and they feel stuck.  They see others around them and feel like others' lives are moving forward and on without them.  Yet, they are happy.  They are glowing with happiness because they understand the purpose of life.  They get what this journey is all about.  They love the little simple things, and the beauty around them.  They aren't distracted by future possibilities and people rushing nearby.  They are focused on their families.  They don't worry about the future and the beauty they might be missing.  Instead they are enjoying the beauty in the moment with their special child, and with their families.  

The people rushing by are typical families.  They are holding their kids hands and pulling them along so they can keep up.  They don't want them to miss anything, and they want the best for them so they keep moving forward.  They don't know what the "best" looks like, or if they will know when they get there, but they believe their purpose is to keep busy and to keep moving forward.  

The canyon and passageway are distractions.  Distractions include activities like karate, dance, sports, and academics; they also include new jobs, travel, and opportunities.  The people want to rush to this passageway thinking this passageway and its activities will get their family and kids where they need to be.  They think it will prepare them for their final destination.  I did not see the final destination in the vision, because it doesn't exist.  These families keep moving forward passing through valleys neglecting the beauty and rushing through passageways hoping to arrive at a beautiful destination that doesn't really exist.  These families did not slow to enjoy any of the beauty because they wanted the best for their kids, and therefore kept pushing them through passageways and activities.  There was also a lot of pressure, because that is what the majority of the families were doing.  They saw other families doing activities and going through the passageway, and they didn't want their kids to miss out.  They did not want other kids to pass up their kids on their way to the destination.  It is important to note that they, too, were happy on their journey, but it was so focused and busy.

Christ visiting the families in the valley first represented a reward for a simpler grateful lifestyle.  All of the families would eventually see Christ, but Christ visiting the families in the valley first showed that keeping up with others and rushing to new destinations was not a pathway to Christ and the grand reward.  Enjoying what you have, spending time with family, and finding joy in the simple things in life was embraced and rewarded by Christ.  Living this lifestyle and staying in the valley prepared us to be in the right place at the right time to see Christ first.

The envy of the rushing families for the stagnant families represented typical families' sympathy and paradoxical admiration for special needs families.  They passed by feeling bad that some of the wagons were stagnant, but they noticed they were radiantly happy and that Christ visited them first.  This made them envious.  Typical families often notice and feel sympathy for special needs families because all of the pain and suffering we go through.  They also tend to admire our strength and outlook on life.  They notice we appreciate the small things, and live life on a day to day basis.  Although they are happily caught up in their rushing day to day happenings, they admire those of us who slow down and enjoy the beauty of family.  They also are sometimes admirable of the perspective we have on life.  We recognize life is fragile and we don't take a single moment for granted.  

I hope that no one feels that I interpreted this vision to mean special needs families > typical families, because that was not my interpretation.  I feel this vision was given to me to teach me that my journey is different and sometimes I will feel stuck and like everyone is moving forward without me.  But many of those around me are moving forward simply because it is what they feel they are supposed to do.  They are busy and their kids are involved in many things, and I'm jealous of the things they are doing, but their business does not allow them the time to enjoy the valley.  And because I have been given the gift of a special life, I have the privilege of enjoying the small things and focusing on what is most important.  I feel this vision taught me there will be a reward for that and that Christ looks favorably upon our simple lifestyle and our attitude of gratitude.  A part that surprised me in my vision is that others busily passing by may admire my unique journey; they may wish they could have this understanding of what really matters in life.  I find it hard that others would envy and admire my situation, but I think that was a lesson I was supposed to learn from this vision.

Thank you for reading this.  I am grateful for my beliefs, and that I know God communicates with us through answered prayers, visions, and scriptures.  Personal revelation is not only a gift given to prophets of old.  We, too, can receive personal revelation from our Heavenly Father.  He communicates with His children today.  I am so grateful that He communicated this beautiful parable to me so I could learn from it and be uplifted during this difficult time in my life.  I am glad for the testimony I have of Him and His son, Jesus, and for the blessing of knowing my family is eternal.  I know that regardless of what happens in Jayson's future, he is one of God's special children and we will all be together in heaven one day; and Jayson's body will be perfected.  I hope this parable and my testimony can uplift others who are reading it, regardless of faith or denomination.  We are all in this journey together.  And we will be rewarded for our faith and attitudes towards our trials.  The joy is truly in the journey, in the valley, and not in the destination.

If you want to learn more about my faith and denomination, I am a member of the Church of Jesus Christ of Latter Day Saints.  More information can be found at:  http://www.mormon.org/

Crossing All of Our Fingers and Toes

It's almost a thrill.  So much riding on one decision.  Genetics at our last appointment decided we had so many good possibilities presented to him, that it would be easier to do Whole Exome Sequencing.  This is a test he almost never orders.  He has got to be close to retirement age, and he told us as I asked a bunch of questions that he has only ordered a hand full of these tests in his career.  We felt so honored to be among the families in which he decided to fight for answers.  He agreed to write a letter to our insurance company asking for preauthorization.  He said it would be done within about 10 days, and then our insurance company usually takes 10-14 days to make a decision.  Well, Yesterday I realized it had been a MONTH since our genetics visit, so I decided to start bugging people. :)  I called and left a message for his medical assistant and I called my insurance company.  My insurance company said they had NOT received a request for preauthorization yet. :(  I was fuming.  I had been told it would be a fight, but I was hoping it would be different for us.  I got a call from our geneticist's medical assistant today who told me she sent the fax on September 24th, but they have received notice that a bunch of faxes did not send that day, and they have since replaced their incompetent fax machine.  She apologized an innumerable amount of times and said she sent it via fax this morning while on the phone with my insurance company to be sure it sent.  The insurance company said they would also mark it as urgent and make it top priority since it was supposed to have been sent weeks ago.  So now, we wait.

I'm not very good at being patient.

I'm not very good at dealing with things that are out of my control.

I kind of obsess about it and freak out.

And I've currently gone off my anxiety meds.  Bad idea!

So I have to focus on what I CAN control.  I can control my faith.  I can exercise my faith.  Now is a time to pray, and pray a LOT.  And we have been blessed by the miracle of fasting in the past, and I fully believe now is another time in which God can bless us for our faith.  In my faith we believe that when we both fast and pray there is great power, because we are showing sacrifice.  It is easy to constantly be asking God for things and hoping he blesses us, but it is more meaningful to Him when we show sacrifice ourselves.  In my faith, this upcoming Sunday is our monthly Fast Sunday.  I am asking for those members of my LDS faith to remember our family during your fast, and to pray that the insurance company may preauthorize our request for Exome Sequencing.  For those not of my family who believe in God and the power of prayer, I request that you please remember my family in your prayers and ask for this preauthorization to be granted.  You may also participate in a fast with us by missing 1-2 meals and praying on our behalf.  Mike and I will be fasting on Friday, October 10th.  We do not want to wait until Sunday, and we will be out of town, so we plan to fast on Friday.  I have also seen miracles happen when many people fast and pray together, and that is why I am asking you for your help.  For those who do not believe in organized religion, you play a big part in our journey as well.  You, too, have greatly blessed our lives with your positive thoughts, encouragement, and hope.  I have had several of my dear friends who do not believe in God still participate in a fast, as it still shows dedication to the cause.

So whatever your beliefs, please pray with us, hope with us.  We need a miracle, and we know with your love and support God can provide us with one, again.  We love you and thank you for all of your love and support.