Wednesday, March 23, 2011

EEG results...

Daniel and I drove in great anticipation for yesterday's test. I sat in the back with Mabel, trying desperately to keep her awake for the long drive. We kept her up late and woke her up at 5 am so that she could be sleep deprived for the test. This causes aggravation in the brain and therefore shows a more accurate result of seizure activity in the brain.

As we arrived at the hospital, I murmured once again, "I can't believe we have to do this..."
and we continued to go through the motions; walking through the hospital doors. There is a sense of adrenaline that kicks in each time we get ready for a new test or meeting with a new Dr. Each hospital is starting to feel a little more familiar, but this particular place gives me such peace.

After getting checked in and signing the paperwork, we went into a quiet room with Mabel as she got hooked up to all of the correct wires for the EEG. This was a time of sweetness for me as I watched her lay calmly, as always. She was swaddled perfectly which is normal for her while she is sleeping. She startles so often that she would never sleep without the pressure of the blanket holding her tightly.
When she was finally ready, I took my place next to her on the bed.
She fell asleep after about 10 minutes and as I knew the test was monitoring her brain, I was so still. I prayed that the Lord would bring results that would help us help her. I watched her sleep contently in disbelief. There are still so many moments that I can't believe this is our journey now. I can't believe that she is having delays and an increase in what we believe to be seizures.
The wonderful nurse who was performing the test came in after 15 minutes and said that she wanted to swap me out with Daniel to finish the test because Dr. K had walked down and wanted to see the videos that I have of Mabel during a couple of her seizures.

First of all, how amazing that Mabel has such a great Dr! She took time out of her day to be present during Mabel's EEG. She could have waited to see the results later, but she didn't and I am so thankful and appreciative! The Lord truly has directed us exactly where we need to be.

Right away she told me that she was seeing some abnormal patterns on Mabel's EEG. She wasn't witnessing any actual seizures but she did see patterns on the test that proved she was prone to having them. More so when she was sleeping than when she was awake.
She wanted to see us in her office after the test was complete.

When we made our way upstairs after the test I felt such relief. Finally we are getting somewhere! We are able to treat some of Mabel's symptoms and help her in a way that I can be a part of and actually see. The neurologist prescribed a seizure medication that Mabel will be on for at least two years. She informed us that she believes that we are on the right path as far as Dr's are concerned. She also reiterated the fact that she believes Mabel will have a medical diagnosis that we will hopefully find soon. She went on to say that she believes that we are dealing with either a metabolic or genetic disorder.
She eased my heart even more by stating that she wanted to be the main Dr over Mabel's care and diagnosis. I am so grateful to have finally heard that from someone.
It's a relief to know that she will be on board with whatever symptoms we come to her with.

Mabel's weight has only gone up by a couple of ounces and other than that she didn't notice any significant change; neither positive or negative.
We finished up the day by collecting the blood necessary to send to Massachusetts (I was wrong about the Mayo clinic as I mentioned in my previous post...) for a clear answer to the genetic syndrome that they have been concerned about from the beginning. However, with each stick of the needle, Mabel responded to the pain! Other parents may have been devastated at how much she cried, but we could have listened all day.
To know she is feeling pain is actually a great sign compared to the alternative!!!

So after an emotionally taxing day, I was exhausted. I am so thankful to have gotten results from the test that will help us bring relief to Mabel. I am so overwhelmed at the idea that this could be the beginning of a lifetime of intense care for her. My hope and prayer is that the Lord would continue directing our path that we might find answers quickly and be effective in whatever treatment Mabel is going to need.

Thank you for reaching out to me! You bless my life and encourage me everyday. I just need you to know that although I don't always respond to each one of you, I am consistently humbled by your love and support and genuinely do appreciate each of you who takes the time to pray for our family. Thank you for writing and letting me know you are near.
I know you are. I can feel your love.

There are moments when I don't feel like talking much about any of this. There are moments when all I want to do is talk about it. Either way, just knowing you are willing to listen when I need to share is just what I need--friends who will love me on the good days and support me through the bad ones.
The Lord truly is our light and our salvation. Whom shall we fear?

Resting in His goodness today and praising God for Dr's who are wise, husbands who are patient and children who are so very precious.
This life, this day, this moment...
They are worth it all.
Every single bit of it.

1 comment:

Bethany said...

Seeing your sweet Mabel go through all of that brought back so many emotions and tears. No baby should have to deal with that....or parents for that matter. You are being very brave. I am so proud of you.& so happy and relieved you are on the right track. That deserves an Amen!! Still praying for your sweet family. I sent an email earlier with my email Really looking forward to connecting with you!!