Monday, October 31, 2011

God's Grace

This past weekend I had the joy of watching one of my best friends get married. This involved a plane ride that I was petrified of. This past weekend was as much about God showing me grace as it was about visiting a longtime friend. You see, I was almost in tears as the plane accelerated down the runway. I would say I was absolutely terrified. I prayed the Our Father…many times. Then suddenly the most miraculous thing happened. I felt a true sense of peace. God lifted my vale of fear and I was able to enjoy this trip taken 36,000 miles in the air.

I enjoyed the scenery and God’s creations. It was amazing to fly over the ocean and then the expanse of desert. Next came the red sand of Zion National park. The national treasure of the Grand Canyon looks so small and large all at once from that elevation. It is amazing that it is followed by the peaks of the Rockies. The Rockies were covered with snow from the storm that had hit Colorado 3 days earlier. It was so gorgeous to see the snowcapped mountains so close.

Walking out and seeing snow still laying piled on the side of the roads and lightly coating rooftops is a site we don’t get here in California. The graces God showed me did not stop there . I had the pleasure of meeting other people who have been a part of my good friend’s life all these years. People I have heard about but have never met.

The faith and goodness of these women surrounded this whole weekend. From the rides I was given, to the place to stay and meals, to the spontaneous prayer session we had on Saturday night. The love all in attendance poured on the new couple was palpable and beautiful to witness!!

On top of all of this I had the super fun experience of re-learning to square dance. I didn’t realize that it could be so fun. Plus it is good exercise!! I hadn’t square danced since the 6’th grade…it was much less awkward this time around.

So thanks for all the prayers…God is good ALL THE TIME!!!

Sunday, October 16, 2011

The Right Path

I believe I have said before that our journey has entailed twists and turns that in the end seem to be of divine intervention.  This latest path is no different.  Just like the others I went sort of kicking and screaming, but now that I am on that path I am thankful I was directed that way.

Friday morning we made our way to Lucille Packard's Children Hospital to the department of Neurosciences.  I confessed on our way that one of my fears was actually that this Dr. Seeing Jasz for the first time after he is so much improved will take one look and tell us we've wasted his time our son is fine.  I told John ,"then we look like crazy people."  My wonderful husband responded with, "then we just say, thank-you our son is healthy and be one our way!"  Yep our outlooks are different, he would be happy being called crazy if it meant our son had no more worries.  Once he put it that way I relaxed.

We met with Dr. Lee-Messer and he spent about 2 hours with us.  Not once did he deny our son has something going on.  He did a cursory exam and asked a ton of questions.  He tested Jasz' reflexes and found what everyone else has found...they react about one in ten times...very hard to get a reflex.  He looked at him and said, "you are a tricky one aren't you?"  He said he could tell based on the tilt of his pelvis and how he holds himself that he is low muscle tone.  He asked us if anyone had mentioned Mitochondrial disease before.  I am not sure if I updated after our last visit with Dr. Carter, but that is what she suspects also.  So, now we have two neurologists suspecting the same disease.  Here is a link for more information on Mitochondrial disease:

He then went through a litany of tests asking if Jasz had had any of them, including an MRI, a muscle biopsy, an ECG...  None of those have been done.  He mentioned he was surprised that an ECG hadn't been done considering usually things that affect the skeletal muscles often affect the heart.  So he ordered one up.  He also asked about genetic testing.  Well Jasz did have genetic testing done and that was the test that showed a deletion on one chromosome and an insertion on another.  The lab who runs the test actually recommended that John and I get tested as well to better ascertain the significance of the test.  This information was not told to us.  Dr. Messer thinks we should get tested because if we exhibit the same anomaly it is unlikely to be related to Jasz' muscle issues.  He did tell us to exercise caution when deciding to get the test as it could have consequences for our ability to get health insurance coverage.

He thinks a less detailed test specifically testing for Mitochondrial disease would be a good idea.  But what he really wants to do is look through Jasz' test results more closely and discuss it with his Colleague's in the genetics department.  Then meet with us again in January.   

Some other points that he brought up are Jasz' changes in strength and ones sided weakness being intermittent can be a sign that this is something affecting the brain.  What i feel good about is now we have a new team of Dr.'s added to the puzzle that is my son.  Since it is such a large hospital with so many specialties, other experts can be consulted where necessary.  I also appreciate that Dr. Messer is not jumping straight to invasive tests, he is taking his time to insure we get the right answer.  He even suggested that a muscle biopsy may not even be necessary.  How nice that we get another Dr. who is of a similar mindset in terms of testing, just because you can doesn't mean you should. 

John and I wonder a little at an ECG not having been done before considering how easy it was to do and how much it is indicated in cases like Jasz'.  Also the idea that, the genetic test results haven't been looked into more.  These are just questions in our head but may be more of a factor of what each Dr. has at their disposal. 

After spending about 2 hours with Dr. Messer we had lunch and took Jasz over for his ECG.  This was a way faster test than I thought it would be, and Jasz did really well!!  We did not leave Stanford until the afternoon and we were wiped.  I was amazed at how that trip exhausted me.  I think all the unknowns leading up to the actual visit took their toll.

In the end, I am glad I was dragged down this path.  We have more specialists available to us now and i feel we are getting closer to an answer.  Something Dr. Messer said really made me feel good.  He said that we have done all the right things and have made good decisions for our son.  He also said that the fact of how well Jasz is doing is a testament to who we are as parents.  Wow, that was really nice to have that affirmation. 

I guess we are left with some decisions to make, which is not something new on this journey.  We are also left with the knowledge that we have a Dr.  Leaving no stone unturned in searching for an answer for our son.  Thank-you God for the people that have been put in our path in the timing they have...what a blessing!!

Thursday, October 6, 2011

Many Hats

Greetings from the desk of the woman with many hats.  As though I am not already wearing enough of them I added one to my head this week with the opening of my online board game store (which I hope you will take a look at)  It is a perfect fit for our family.

As you know I am PTSA president this year and it is quite gratifying to see all we have laid out for the year and to know I have a good team helping to make it all happen.  Our big one is our first ever Spartan Carnival.  It is such a cool feeling to know I am part of creating a new tradition for our school and our community.   It is all falling into place so nicely and that puts a smile on my face.

As PTSA president there are lots of meetings to go to and sometimes my boy must come with me.  I was nervous about going to the luncheon with the Superintendent, Mr. Bush, this past Wednesday with two year old in tow.  But I came prepared with food I knew he could eat, coloring and of course cars.  I explained to Jasz that while we were eating he could make as much noise as he wanted, but when the grown-ups got quiet he needed to also.  He said okay but I held little hope.  Boy was I wrong.  As soon as the meeting got underway, he quieted down and entertained himself.  I had to leave early because the girls had a half day.  My Council president e-mailed me today, because she knew i would be happy to hear, that after I left Mr. Bush told the whole room how impressed he was with my boy! What a compliment.  It was nice to know it wasn't just my own motherly pride, others saw it too.

I for the first time got to volunteer in the K-2 classroom.  It was so much fun and it was so nice to see the smile on Alina's face and her pride that her momma came to help. It was all possible due to a good friend who watched Jasz so I could go. 

I have realized lately just how lucky I am in the friends I have.  We have some really good friends who are there for us when we need them.   In fact, some are helping us next week while we take Jasz to Stanford.   They pray for us, cry with us and laugh with us...we have been blessed indeed!!

So thanks to all who help me wear so many hats!!

Tuesday, October 4, 2011

My new Addition

I have started a new adventure. As a parent who loves to have family game night Simply Fun was a perfect fit. All the games can be played in 30 minutes (the perfect attention keeping time for kids), are easy to understand and are educational. stay tuned for an invite to my launch party, but in the mean time check out my website:
and let me know if you would like to place an order.
Thanks for your support