Wednesday, June 19, 2013

Poor Neurology. 

It's one of the few specialists that has been spared my presence until now.  I promise, and my husband would confirm, I'm really not that bad.  Although, there is a GI doctor and a neonatologist or two out there who would say that I'm a pretty tough crowd. 

I'm a fighter and an advocate for our daughter, I ask a gazillion questions, and I analyze everything. 

I always wondered why God gave me this incredible gift of researching, locating, dissecting, and analyzing things.  If I didn't have 19 chil'ren and weren't so old, I might go to medical school. 

Growing up, I was always under the impression I had this gift for my future in the FBI. 

But no.

It was for my future as a SNM, Special Needs Mom. 

So here's the scoop from yesterday's appointment: 

1) We loved Vanderbilt, so inviting and family friendly.  Anna Claire and Ava were not thrilled about spending the day at the hospital, but upon entering the building, that all changed.

2) We loved the neurologist.  Come to find out.....He had NO IDEA who the person was who emailed him and asked if he would see Alli sooner.  He just felt led to say, "YES!" 

Let me just say, God is oh so good!!

3) Since this was his first time to see Alli, he had a lot of catching up to do.  He quietly listened as I laid out the last 29 months, asking questions when he felt led to do so.  Score for a doctor who listens.

4) We discussed the seizures and while her EEG didn't show epileptic seizures, he assured me that doesn't mean she didn't have seizures.  In fact, based on my explanation of her episodes, he believes she is experiencing Petite Mal and Complex Partial Seizures 

5) We discussed since she was Severe IUGR her risk factors for long-term neurodevelopmental disorders.  Her head circumference has remained extremely small which is also worrisome.  These two things alone, make her extremely high risk for seizures, news to us.  We knew she was at risk, but not extreme high risk. 

6) Development has been slow for Alli.  While there is progression, it has been significantly slower than other severe IUGR micropreemies of similar gestation and weight.  Her extended NICU stay and oxygen needs were taken into account, since she remained in the hospital 3 1/2 months longer and required oxygen longer than the "typical" severe IUGR micropreemie at a similar weight and gestation. 

7) We concluded that she could be potentially having seizures many times a day.  They've just gone unnoticed.  If this is the case, this could be the contributor in why her development has been slower than the norm. 

8) Everyone was in agreement that we did not want to medicate daily for these seizures.  At this point we're having to weigh the pros and cons of medicating and the cons win.  Now, if it is found that she is abnormally seizing daily, we will change our treatment plan and medicate daily.  We did leave with a prescription for a suppository to use in case of an emergency.  John and I both feel very good about having this on hand should Alli have the Big Mama of seizures. 

9)  Speaking of the Big Mama of seizures.  He felt confident based on her being high risk and her recent increase in activity, that she would have a Grand Mal sooner rather than later....The stereotypical convulsing, stopped breathing, type of seizures.  I claim never, in Jesus name.

10) He wasn't a fan of the EEG we did last week.  They simply sent him a report and he wanted to actually read the study and see the environment she was in.  John and I totally knew this was going to happen and tried to get out of doing the EEG in Knoxville.  Regardless, we'll do it again.  Thankfully, he believes the drive over will be enough time for them to get a good study!  So we don't have to keep the baby sleep deprived!  He's also suggesting we do a 24-48 inpatient EEG soon.

11) The EEG revealed abnormally slow brain waves, which is to be expected with where she is developmentally.

12) On the same day, Alli will have a sedated MRI.  Between her seizures and severe developmental delays, mainly speech (testing 6-9 months on most aspects) we need to get a good look at her brain.  It may or may not change the treatment plan, but we have to see what's actually going on up there. 

To sum it all up: 

Severe neurodevelopmental delays, Petite Mal and Complex Partial Seizures, High Risk for Grand Mal, abnormally slow brain waves, sedated MRI and EEG within the next two weeks, emergency medication for seizures. 

And did I mention this guy had NO IDEA why he said, "YES" to seeing Alli?? 

We still feel like things are up in the air, but we know that every step of the way, God is leading.  We are so thankful that His plans always succeed and go above and beyond what we envision.  We need not worry when He is leading.  Because He is and He does. 

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