Recently, we have noticed a new type of seizure. This is perhaps a 4th kind of seizure. This is not good news. The more "types" of seizures you have the worse your long term prognosis. Sigh.
Beginning on Saturday we noticed Oliver squinting. Similar to what it is like when you walk into the daylight after being in the movie theater. He looks uncomfortable to say the least. Andrew and I both feel sick about it. You know when you are a parent and in your gut you just feel like something is really wrong? Well that is how we feel about his eyes!
Yesterday we took him to our pediatrician and she couldn't find anything wrong. We spoke to Oliver's pediatric ophthalmologist this AM and they concurred with our pediatrician's assessment. Apparently, if this was a traditional eye issue, there would be other symptoms. Of course I wonder if somehow the Sabril has something to do with this? Lord I hope everything is ok with his vision long term!
As I write this I am waiting to hear from the Boston team. I have emailed a video of the squinting and am waiting their reply. Since Oliver has an ambulatory EEG scheduled for Thursday here in Wilmington, they may suggest we wait until then to decide our next steps. Of course if he has to go inpatient for an EEG we'll try for Duke or to go back to Boston.
Prayers for peace, you know the kind that passes all understanding...would be super helpful. Of course, prayers for wisdom and insight from our doctors would also be great. I'll try and keep you updated.
Oh friends, thank you for walking through this with us! Your support is such a treasure to us!
"I would have despaired unless I had believed that I would see the
goodness of the Lord
in the land of the living."
Psalm 27:13
3 comments:
Words fail at a time like this. Just know that I am praying praying praying for God's mercy on your family. We love you.
Sherry
You have my prayers. Being a parent makes the journey of stress and struggles you continue to endure so much more painful to watch. Hugs and prayers are being sent your way.
Oh Stephanie.
I pray for you and your family. I pray for peace, for answers, solutions, for laughter and love. And strength. And energy. Goodness....the list could just go on and on!:)
You're doing an amazing job and I'm sure Oliver feels the love of his parents. Always remember that!
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