Boy does it feel good to be home (well, at least to Gran & Poppy's) after our stay at the hospital overnight. I know a baby boy who was in need of a good bath and a momma who was in need of a hot shower. Drake's home-nurse, Lisa, is our lifesaver! If it wasn't for her, I would not have had dinner or breakfast...and possibly my sanity. We were reunited this evening at Gran and Poppy's with daddy and Kennedy. It was obvious just how much Kennedy missed us by her excitement when I saw her face! Then, she crawled over to Drake's carseat & used his foot to pull herself up. She knew just how Drake needed to be unhooked to get out of his carseat and she tried to help. I love the picture that Drake's home-nurse snapped of this precious moment!
After Drake's overnight EEG, it was determined that he is currently having both infantile spasms and myoclonic seizures. His diagnosis is modified hypsarrhythmia. We will begin treating these spasms and seizures tomorrow with two different medications. We would have begun today, but none of the pharmacy's had the medications in stock. Drake's neurologist, Dr. So, is wonderful and is working with us to control Drake's seizures while not sedating him to a point where he would not be our little boy. We will need to work together closely over the next few months until we can figure everything out.
Drake will begin his medications of Depakote and Carnitor tomorrow with a gradual increase. This is just one more hurdle in our journey, and something we will overcome! His episodes have been happening more frequently lately and we are excited about knowing what these are and getting them under control.
Precious, precious babies.
ReplyDeleteprayers everyday for all of you but especially Drake.
ReplyDeleteso precious and so sweet god bless all
ReplyDeleteBeautiful pictures and I am amazed at the miracle of these two darlings. Drake has such soulful eyes; they reach right into your heart!
ReplyDeleteHi. I am not entirely sure how I stumbled upon your blog months ago, but have so enjoyed reading about your children. My husband and I have almost 5 year old twins that were born at 27 weeks. Our son had a rough course and spent 10.5 months in the NICU while our daughter only 12 weeks. He came home with a trach, ventilator, oximeter, apnea monitor, oxygen, g-tube, feeding pump, etc. Shortly after his 2nd birthday his trachea was reconstructed and he has done very well. He is developmentally delayed with a communication disability and a sensory disorder. But, in spite of it he and our daughter are the very best of friends. She is his best teacher and their relationship something that no one will ever be able to put into words. I can see that in the pictures you posted today. They definitely have a bond that is far deeper than words. They are precious.
ReplyDeleteGod Bless you all.
Mike, Laura, Thomas and Julia Bidne
www.caringbridge.org/visit/bidnetwins
I love seeing the progressive pics- it's so amazing how much both of them have grown!! Glad you investigated and pursued a diagnosis and found treatment options - Their incredible progress is largely due to your persistence!
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