It’s Been A Week

First of all, THANK YOU for everyone who thought and prayed for us during Hannah’s stay in the hospital. She did so well and took everything in stride. She was literally “tied” to a bed by her hair and never once tried to run or get down or escape. It’s like she just knew what to do. 

So, we arrived around noon Monday, they hooked her up and the monitoring began. By mid-day Tuesday the doctors thought they knew the issue but wanted to observe her another night. There was never a seizure to capture, but there was lots of activity. What was determined, is Hannah has eses seizures. Her brain does not seem to settle or slow down at night which could be the cause of her sleep issues, focus issues, speech issues and so on. Again, left unchecked and unmedicated, could cause neuro-regression. Whew, yes that’s a lot. 

So she was discharged Wednesday having meds and a plan to repeat the EEG in a couple of months. 

Of course, being the guy he is, Keith has been researching since we heard the diagnosis and reaching out to others. If the medicine does indeed help the eses it could be huge for Hannah. 

Right now it’s a lot of wait and see and a lot of H adjusting to medication. Just in time for school to start, haha. 

We know that this was not accidentally found and the Lord has big plans for Hannah. We thank God that this was discovered at age 5. 

Please pray the medicine can be adjusted properly so that Hannah can handle it and it not only prevents seizures but controls the eses. 

Right now we are taking it day by day. 

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. 

Lamentations 3:22-23

A Puzzle

Who do I cling to?

From where does my help come?

My help comes from the Lord. 

Maker of Heaven and Earth. Ps 121

As many of you know Hannah has always been a puzzle to us. One of her early intervention speech therapists once described her like that, and even though it made me cringe a little, I think it defines her perfectly. As she grows older most of her decisions make sense to me once I figure out what she was thinking, but lots of times it’s like putting together a brain puzzle. 

One thing that a neurologist warned us about when she was 3 months old was the possibility of seizures. At that time, she had lots of other things going on so we just prayed that she would never have one and it would never be an issue. It’s actually a question I get every time we see a new doctor. And up until now I have always answered no. 

Well, it happened (see previous post) and even though I know many people have seizures and live fine lives with them I still did not want this for my daughter. I don’t like checking her every time she is lying quietly on the couch or feeling relieved when she comes into our room at 2am. 

Last week she had a routine EEG. Keith went with her and said she did very well. She sat the whole time and let them put tons and tons of probes all over her head. She was a rockstar, really. 

Going into this EEG we knew there would be abnormalities because her brain has been malformed since birth. But when a doctor schedules a telehealth visit at 9am on a Monday you know it’s not good news. Hannah’s seizure seems to have started some mis-firings on the right side of her brain. Left alone they could cause more damage. Medication is needed. We spent Monday waiting for her neurologist to call with an appointment which could possibly be the next day. 

After a lot of discussion between doctors it was decided that she could wait 3 weeks (insurance mandated wait period) for a follow up EEG. 

So we wait. 

This, unfortunately, is another piece of the Hannah puzzle. We pray that the right medication is easily (& quickly) found and that her hospital stay is as short as possible.