HOLY GROWTH BATMAN!!

At our appointment today with Jases pediatrician, Dr. McCune was good. Dr. McCune by the way, has been so amazing through all this. He has been our biggest advocate in trying to get to the bottom of all this. He is more than wonderful and would reccomend him to EVERYONE! ok back to appointment.

I addressed his head growth, which I knew was alot this month becuase one day his helmet didnt' fit. Literally. Dr. agreed and showed me this new chart. The last two dots at the top are growth in ONE MONTH!!!

So that alone is very very troubling. I have noticed his eyes have been a little off. One side seems a little weaker than the other. The eyelid is a bit droopier, and he can't quite follow objects anymore.(his geneticist and physical therapsit noticed this recently) His eyes cant go from the very corner of his eyes to the other corner.

During therapy he can not lift his head off the ground when we are in the crawling positon. His head just seems to heavy at this point. He was able to do that 2 months ago.

He is not eating as much anymore.

His heartrate drops below 80. Dr. doesnt' seemed concerned with that. Great we will take it :)

His off the charts Periodic Limb movments.

With everything mentioned it seems like an MRI is in order. We will go in Friday morning at 6:30 am to have the MRI. This should tell us so much. I will know if this is a hydrocephalus issue, (which I hope.....) or if the mylination is still delayed. It will be a big day and hopefully we will have so many answers. I just hope they give us the results Friday, and not wait all weekend.
We also hope all goes well with sedation. It should.

Ill post results as soon as we get them.