Doesn't it figure?

Doesn't it figure that the first night in many days that your child actually WANTS and is ABLE to sleep more than an hour at a time would want to sleep on the night that I have to sleep deprive him for his EEG in the morning? Matthew was up all night on Tuesday night into Wednesday, didn't nap all day yesterday for my Mom while Chris and I were meeting with the cochlear implant team at CHOP, and didn't even fall asleep on the turnpike coming home! We kept him awake until 10:15pm and had to wake him up at 2:15AM this morning, and keep him awake now until his test at 0930. Matthew and I have been changing activities every few minutes, and the poor thing is so tired. He just lays his head down and cries looking at me like "Mommy, why can't I just go to bed?" He has had such a traumatic time lately with appts, tests, pokes, unknowns. Please pray for my baby today.....

We have suspected some seizure activity, and really want to get to the bottom of all of this with this test today. Thankfully, we have an amazing pediatrician "Kate" who has helped us since day 1 get the tests Matthew needs. Neurology hasn't even given us an appt. yet, and that is SO frustrating for a parent(who is a nurse by the way) whose child is having seizures and has new findings on a brain MRI! Just don't seem to understand it, but I will keep on fighting until we get Matthew the care he needs.

After meeting with the implant team yesterday, we do have to get answers to his MRI and things before we can proceed with the implants and further testing for those. But, they are working on insurance authorization to even see if it will be covered at CHOP. That will take 2 weeks, so please pray that will go through. Then, we can see the surgeon, and have the rest of the testing done for the implants. They then all meet as a team and determine whether Matthew is a candidate. Oh, do we hope he is.

Right now, we do have bigger issues....Mommy and Matthew staying awake these next few hours so we get the best test results. But seriously, there is something really not right about sleep depriving a child to try and INDUCE seizures......I will be so glad when this test is over.

We have a little while before Daddy wakes up and then that will pass some time having breakfast with him before he goes to work. Then, I hope the sun will be up so we can go for a little walk, take a bath, then be ready at 9 to leave for our test!

Pray for my Matthew today if you have time! (And for Mommy and Daddy too.....we are pretty wooped right now physically and emotionally!)

Love,
Melissa