Jase my best little pal!

How stinkin cute is that face? Its like I can just see it going through his mind......"another test....really....Come on. Its getting old, but whatever give me a bottle!"

He is such a good sport. Really he is my little pal who is so easy going and the most mellow thing on this whole entire earth. Didnt' make a peep while they were putting all that garbage on him. That was for the sleep study.

He has had such a rough year of life. Geez it has been a doozy. Our most recent test was a sleep study. Sure enough he has moderate to severe apnea. He stopped breathing many times had over 232 periodic limb movements. (in 397 minutes) Less than 5 per hour is normal. So he is clearly not getting a good night sleep. Once we begin O2, Im hoping he will get stronger and able to work on those muscles and start moving around!

We also have seen many specialists to try and figure out why Jase is not well. He is very lethargic and it requires so much effort for him to move. His head is very large, the size of Jordans. and he nearly 5! Needless to say that is very concerning. Especially with the lack of milestones. He is able to sit, and roll. He can also get out of sitting into laying. That is the extent of his physical activities, not much for a 13 month old. He has been working hard for 9 months trying to learn to stand or crawl. We havent' lost hope he will someday!

Jases 1st MRI indicated he had a delay in mylenation (thats the mylen sheeth that surrounds nerves.) Also thinning of the corpus callosum. (thats the part that connects the right and left side of the brain.) Enlarged ventricles, and some empty black space filled with fluid.

From what we can tell as of today, the black spaces have filled in nicely. Thank goodness. We will be doing an MRI to see if the meylination catches up.

At a recent drs visit we realized Jase has a heart murmur. It is an innocent murmur at this time and hope to not have to add a cardiologist to the list of drs.

He has had 2 episodes of turning blue and not breathing. Not sure if they are seizures, but very very scary!

We see a geneticist to see if all these random ailments lead to one syndrome. We currently have a test out to see if he is lacking the PTEN gene. That gene is a cancer suppressing gene. So if he is missing that gene, he has extremely high chances of cancer, over and over. We pray it comes back negative.

Oh and how could I forget he wears a flippin helmet!! Im not sure how I can ever forget that ginormous thing! because his head grew so fast, and he is so inactive, it got really flat. So we have attempted to round it out. It seems to be working great, and should be out of that thing by next month. Oh ill be so happy to get rid of that thing you have no idea!

Jase has been the best thing ever. Even today the lady at ti pan said, "oh he is such an angel. I walked in and noticed him from across the way and thought what an angel! It is so true. He really was sent with such a special spirit. He exudes perfection and is so so so cuddly. Oh I love him so much!!

Thank you so much for all your prayers and support. We feel them. Please keep praying for him. We need all the prayers to help up get to the bottom of this mystery!

I will keep posting and updating this journey as we take it. And I will mention the other kids too!