Thursday, July 7, 2011

Repeat EEG results

We woke up at 5 am; my girl and I.  She cried for the next 2 hours because she was so tired.  It was torture for both of us and the day was just beginning.  Mabel has to be sleep deprived for her EEG's.  It's exhausting in every way.  We have to drive an hour to the hospital and it is such hard work keeping her awake the entire time.  However, today it worked and the test went beautifully.

We didn't get great results.  Basically, she is still having consistent seizures both asleep and awake.  Her brain is actually seizing more actively during her sleep then while she is awake.  We saw some visible tremoring towards the end of the test as she was waking up and they were able to monitor and record that as well.  Dr. K explained that most of the seizure activity is coming from the back of the brain.  It doesn't lead us to any answers, but it does pinpoint where the seizures are transpiring.  She did mention that it does tend to coincide with the retinal dystrophy that was confirmed in her ERG a few weeks back.

With all of that being said, she mentioned a few disorders, diseases and syndromes that fit the current symptoms.  Each of them were tests that we are currently waiting to hear results from.  She was pleased to know that the geneticist was on the same page and said that she wouldn't run any further tests until we have results from this group.  She decided to increase Mabel's seizure medicine and we will do that twice in the next month.  If her seizures are not better, we will try another medication.  At this point we did discuss how a diagnosis could possibly help give us a clue as to what medication would be most reliable in treating Mabel's seizures, however that isn't always the case.  Some disorders and diseases are far too difficult when it comes to treating symptoms like this.

I sat in the office today and was proud when Dr. K was noticeably impressed with Mabel's progress.  She noticed an increase in her looking at is (which is true and wonderful) and also in her strength.  Mabel smiled the whole time and it just melts my heart.  Despite it all, she's so happy and such a blessing.

Today I felt as if that confused, sad, overwhelmed, over thinking mom had taken a vaca.  Today I felt at ease, content, covered in peace and wise.  I am thankful for the strides that I have taken in this process that has been so grueling and trying.  If I were on the outside looking into the office today I would say that I was a mom who is slowly pulling it together and I am really proud of that.

Of course we got home and I had to make a quick trip to the Dr. myself.  I have a sinus infection with body aches, a sore throat and cramps on top of it all.  And then we find out that while we were gone, Heidi got out and bit [but didn't break the skin] a little boy who was walking by the house.  I find this unusual since she is our family dog and is around kids all the time but nevertheless, our awesome neighbor called the pound and now I have a huge mess to clean up.  The last thing that I needed to deal with was people thinking that my wiener dog is my main priority. 
I'm upset she bit the kid.  Obviously.  But he and his mom came by and talked with Daniel and he seemed fine.  It could have been done and over with.  But no.  Nosey neighbors have caused me even more stress {and money} that I just didn't need. 

So I had a good, long cry.  And then I pulled it together.  Now I feel exhausted and cannot even believe that we are spending every day that Daniel has off doing something at a hospital with Mabel.  But we are doing it and it's ok. 
We're going to be ok.
It's just life and we'll make it through this.

In less than 3 weeks we should have answers for Mabel.  I'm counting down the days and praying that we are taking all the right steps in the meantime.  I see how God is orchestrating everything together around me and I am thankful.  He is a good God who cares about the details of our lives.  He has us in His hand even when it feels like we are far from His care. 
We aren't.  He is so very near I can feel His very breath upon my skin.
He is absolutely all I'm living for:  He is the only thing that makes it all worth it.

I know that Mabel's story is touching many of you and I'm grateful.  But please let it always be about Jesus.  Please know that He has a plan for your life that is great, pure, and wonderful.  If He is intriguing you to pray for Mabel today, I am thankful.  But please feel free to email me with your requests so that we can pray with you too.  Our need is no greater than another and we would love to cover you in prayer.

Pound Puppies, here we come:(

1 comment:

It's not unusual to be loved by anyone said...

Oh Ramee...after reading this i would love to come over and give you a big fat HUG and tell you how proud i am of you and Mabel. I don't have the right words every time and sometimes i don't even know what to say...but i am reading your blog every day and i am thinking of you and your family a lot. You will always be in my prayers girl!!!