Monday, Monday

This morning, the doctors decided to do an MRI on Titus - which we quickly vetoed since he can't have an MRI with his cochlear implant (it would suck the magnetic implant right out of his skull). Instead, they settled on a CT Scan. Again, they are searching for answers by ruling out other things.

When Titus was a few days old, he had a CT Scan that showed a cyst at the base of his brain. This is called a Dandy-Walker Variant. When Titus was 10 months old, another CT Scan and a MRI was done. At that time, they could not detect the cyst. Today, they could see the cyst again. It really doesn't change anything - but one of the effects of Dandy-Walker variant is delayed motor skills - which Titus has.

Dr. Gelfand, the pulmonologist, has turned down his oxygen levels to see how he would do - and as expected, he's doing great (he waits till he comes home to have sinking spells). Even during his naps today, his SATs were high as his oxygen was very low. We pray that continues. We have grown accustomed to keeping him oxygen, but it will be a glorious day when he is off oxygen altogether.

They also ordered a 24-hour EEG test which started around 3pm today. Titus has about 20+ nodes glued all over his head as he is hooked up to the machine. Becky stated that he has done quite well with it today.

His fever is gone, his rash is getting better, his blood levels are still tricky though. His sodium is low, so they are giving him sodium chloride with his feeds - again, no real explanation why his blood levels are acting up though.

So, maybe tomorrow, maybe Wednesday, and Thursday at the latest is what we are praying for.

Also, one more prayer request. Months ago we applied for the HIPPS program. It's a state-wide program that will assist with insurance premiums. I have called every few weeks checking on the status since we haven't heard anything (but were told it would only take 2 weeks to be approved). Today they told me to call back on Friday. It would be great if we were approved for this program and would appreciate your prayers on that.

Cade still has the flu and has a hacky cough. He goes in cycles of feeling ok to play games to feeling tired. So tonight, while he was feeling good, all us boys played a rousing game of Uno. Tucker and Cade are hysterical playing Uno and it makes them feel like one of the big boys.

Thank you for the prayers. We know it's your prayers on days like today that carry us through.