Update

Lots has been going on. We had an MRI of the brain and spine to see if the Chiari is getting worse. Its recommended mri's every 6 months. While that is alot of radiation, so much can change in his head in 6 mo. So its a decision that is hard to make. With Jase still not making much progress, we decided to see what was going on in there. Also from day 1 of this journey, drs. told us by 2, we will know whats going on with the myelnation.  So this is pretty close to 2 and Im anxious to see whats going on with mylenation.   Genetist also ordered an MRS. Different type of MRI to look at the brain tissue to see how its metabolizing things. (i hope that is right)

Well both MRIs (head and spine) looked good. Spine was totally normal. Brain remains unchanged. not better but not worse. The meylination looks just fine. So that is excellent news. The Chiari is still 9 mm and drs. are not convinced that Jases symptoms warrant surgery at this point. I am so glad we havent' had to go into that sweet, special head of his.

Until today.  As we went on a wonderful trip to California, I was able to hear and watch Jase sleep very closely.  I noticed he was gasping and waking up a lot, for no apparent reason.  He has also had 2 episodes of waking up in what seems like a night terror. Totally inconsolable. Which is VERY VERY out of character for him.

I captured this video of him sleeping.  you will notice that he stops breathing a lot, but not for too long. I sent the video to his Dr.  She was quite concerned because he is not in respiratory distress. That means there really is no reason for him to stop breathing so much. Unless something in his brainstem is causing the problem. Thats exactly where the Chiari is. Brainstem.  So she is thinking that Chiari is causing his apnea to get worse.

After Jase had tonsils out, his apnea had improved alot. He still had apnea, but dr felt good taking him off oxygen.    Now he's back on oxygen and more than before.  Its disheartening to  have this happen, because we had just gotten to a good place where I was ok with what the drs. were telling me.

Speaking of.....what the Drs. told me.   We had another appointment with the Geneticist last week. To review the good MRI results.  She also said that looking at everything she is confident saying that he doesnt' have a degenerative brain disease, or metabolic/mitochondrial disease. This was the biggest load lifted off my shoulders. I was so relived. I couldnt' imagine anything worse.
I asked well then what? whats going on? why cant' he crawl, or walk, or even make a sound other than hummimng and an ahhh here and there.  and hes almost 2.  She basicly said that Jase will be the equivalent to a mentally handicapped person.  He learns so slowly and always will. She also said he wont speak. He should walk, maybe not till 5 or 6, but he should walk eventually.  I was so relived to hear this news. I have known for along time that Jase will be mentally behind and will  need help his whole life.  So I actually left in great spirits.  

So now that this is coming along its another bump in the road that hopefully doesnt' lead to a brain surgery.  Its discouraging and upsetting.  Im SO over drs and tests.  and Im sure Jase is as well.