Thursday, January 28, 2010


Jude had several seizures again last night, and one was terrible. Tears began streaming down, he was gasping, and bright red stripes laced his face. It makes me wonder if Jude isn't losing oxygen during his seizures now. So I put an email into the neurologist today to see what he suggested. I have also noticed that Jude is opening and closing his mouth on a repetitive basis. He did this at three months old, and that's when we discovered something was wrong with Jude. I took him into the hospital letting them know he was opening and closing his mouth, and it was strange. Turned out those little movements were grand mal seizures. So this is also concerning me.

This all happened at a unique time. Jude was re-evaluated yesterday for the MDCP program. They send out an RN once a year to evaluate your situation. By the end of the meeting she told Mike she thinks Jude needs a nurse on top of his respite care. Mike explained that we had talked to someone about that before, but since Jude doesn't have a G button it's not available. The nurse was nice, and said we needed to call our respite office, and talk with them. She explained that she believes the amount of seizures he has will eventually cause a respiratory issue. So I placed a call into them, and they agreed, and are working on the situation.

So we are waiting to hear back from the neurologist, and I will post an update. On lunch I have to take my car in because fate doesn't like me Also mother nature is about to dump another ice storm on North TX. I was praying it would miss us, but I just got notification that our office in Amarillo shut down for the day because it's already terrible there. I am still hoping it doesn't reach us. Come on Spring!!!


Candace said...

Oh Jenn, you struggle and I am feelin' your pain, right here, sweetie! I don't blame you about the oxygen thing...I would be worried too! They are calling for snow here, which we never get! And of course, Carl is leaving in the morning for a three day work trip out of town! Praying for NO snow here, so he can drive safely!

Our Journey said...

sorry that things are getting worse, but thankfully mdcp came out when you need them most! hopefully they will bump up your hours and get you a nurse!

praying for yall, hang in there!

Kaidence's Mommy said...

Please know that we are praying for ALL of you!

Colleen said...

I hope sweet Jude's seizures get better. I will keep him in my prayers!

jocalyn said...

Sorry about the seizures. Has your neuro talked about switching meds, or maybe even starting the Ketogenic Diet?

Texas Medicaid won't approve CCN hours for seizures only. Check with your insurance though. We were able to get Aetna to cover some nursing.

I hope MDCP increases your hours...but we just had our review and I was surprised our hours were decreased...and we got a gbutton and diabetes diagnosis this year. Guess cuts are being made all around?!

Hang in there.