Last Day of School a thank you to the staff

So, my first grader is having her last day of school today.  Fortunately, her oldest sister was able to go with her to help out.  They had some bouncy houses and she cannot do those with Chiari.

I am so thankful for all the staff at her school, but especially nurse Paula and her First Grade Teacher Mrs. Y--k.  In fact, Abri wants to be a first grade teacher when she grows up!  She told us short people make great teachers.  She is excited about her yearbook and I think she is going to greatly enjoy seeing all the familiar faces from school of other kids and staff.

I want to apologize to the teacher she gets next year.  This is because we are currently and will probably continue to spoil her rotten all summer!  :)

Abri has lost her first upper big tooth.  The other one is going to be gone soon too.  My toothless sweetie is getting so big.

I look at her and think about all the good days she has without headaches and neck pain and swallowing issues and leg weakness.  Then she has breakthrough moments that are severe for her and I know we are doing the right thing.

Here is what Abri's Chiari looks like right now:

Here is a picture from the chiari institutes site:

Abri does not have the syringomyelia (unlike her 4yr old sister Olivia), and that is another reason to do the surgery.  We never want her to get it either.

It is hard to tell that Abri has Chiari because she seems fine so often.  Here is what happens when her neck is flexed and extended:

Do you see how that "Chiari" which is really the "tonsils" of the cerebellum get pinched in there?  See how her brainstem gets "knocked around"?  That's what causes all her weird symptoms all over her body!  I cannot imagine how crappy that would make me feel all the time every time I moved my neck around!  I think Abri's beautiful smile is what keeps us from remembering that herniation is restricting her CSF flow.

As this month of May ends, we look toward a surgery that is getting closer.  I am writing a lot about this now, so that in the future when my kids or others ask me how I did it, I'll be able to remember!  Some days seem to run together.  Keeping ourselves totally occupied with business is the only way to avoid obsession about this situation.

Today, Olivia was dragging her feet on the carpet.  Her legs were hurting again and last night Abri was crying over the inside of her head feeling too full she will say.  She says it is like a balloon.  I worry some about Abri and Olivia's head pressure, but I know that God has it all in his hands.  Somehow, hearing these complaints helps me to know that we are doing the right thing, and I think that is how God comforts us in a strange way.

We cannot wait to get past this surgery and DEFEAT THE DEVIL AND CHIARI ALL AT THE SAME TIME!  What a testimony we are going to have!!

Thank you for all the people praying for us.  We love you all.

More on Instability, Syrinxs/syringomyelia and surgery in 30 days

So, we took Olivia to get her CT scan done.  She was NOT happy to be going :(

Dr. George ordered the scan in order to check her anatomy for "instability".  He did not specifically say anything about the retroflexed ondontoid that I have wondered from the "hill" on her MRI.  I'll be asking him about that at our next visit, scheduled the day before surgery.

Olivia did GREAT for the CT.  NO SEDATION!! That's a first.  I wish the health insurance companies would just pay for the scans all at once instead of having to go 4 different times!  Here is a picture of her during the scan:

                                                              So brave with Daddy

Abrianna is scheduled for a craniectomy with great hope that she doesn't need anything else, but we are having to give consent for more things.  I guess when you have a surgery like this you have to consent to let the Neurosurgeon do whatever it takes during surgery. 

Olivia is scheduled for a craniectomy, duraplasty, and laminectomy in order to get her Chiari Malformation Type 1 and Syringomyelia under control.   I have requested that they harvest Olivia's own skin for the dural patch rather than use a foreign patch that could cause complications if her body rejected it.

Both surgeries are scheduled for 90 mins each.  I am thinking that Abrianna's should be faster should they only have to do the 1 thing. 

 For those who are new to the blog and havn't seen the pictures posted of what the MRI looks like currently for Olivia:

Her Syrinxs are very large.  So large, they saw them on the CT scan.  Here is what Olivia's CT scans looks like:

3D is so cool Right?  Anyways........According to Dr. George, Olivia's bone anatomy looks great and he is not worried about instability.  I am going to specifically ask him about retroflexed ondontoid at pre-op appointment the day before surgery.  Praise the Lord for good news finally!  But I looked through the images on the CT scan several times and I could sort of see the syrinx when I adjusted the brightness but I definitely had to know what to look for because I really can't see it on the images at all!

That makes me even more concerned for her because of what she has gone through.  I remember when she was 3 she would say all the time "I'm not feeling good" and "My neck is beeping".  :(

Well, both girls are scheduled for surgery on June 20th in Austin TX with Dr. George.  It is extremely stressful. 

I'm looking forward to having this fixed and moving past this.  Every year I say "I just have to make it to Christmas this year".  Currently, I just wan to get through July 4th.  That is two weeks from surgery and Independence Day.  I am going to celebrate July 4th as our independence from Chiari.  Everyone says that surgery is NOT a cure and I know that.  However, knowing that we are working to get rid of the syringomyelia is independence.  Working towards reduction of neck pain and headaches for Abrianna as well is independence.  Freedom from disease.

I am being told this is going to be harder on me than my children.  I sure hope so.  Currently, that is definitely the case.  Can't even look at them without my heart sinking in, with a sharp pain that immediately jumps into my throat.  I swallow away the tears so that I do not worry them.  Sometimes they look at me and say "what's wrong mom?"  and I just tell them "I have a swallow stuck in my throat". 

Amazing that your kids can see right through you right?

Well, that is the update for now. Here's a pic of my Chiari warriors with their sisters.  :)