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In Uncharted Waters...

....with no sign of a safe harbor. This past weekend we were reminded about the fragile state of our ship. By ship I mean of course, the things that we have come to depend on in these turbulent five months. The things that keep us afloat and out of the deep cold waters. These little things are Leo's health, his big appetite, his smiles and giggles. Our daily routines with him; the bedtime baths, the therapies, the inevitable doctor visits, lazying on the couch, the little spark of pride and happiness we feel when his nurses comment yet again about his wonderful thriving presence. I felt like all this was threatened by our first experience with seizures. Seizures are the new hazard that has come up on our horizon. I guess naively, I hoped and assumed that somehow our little man would be spared. That he has suffered enough, that his parents have for sure, enough to last us the rest of our lives, thank you very much. In fact, one doesn't need much of a brain to have a seizure. Most of the hydran children that I have heard of, they all have seizures in varying degrees of severity. The seizures range from something small like a rhythmic blinking of the eyes, to episodes that last minutes and can cause all sorts of life-threatening problems. All these children are taking meds to help control the seizures. Now our little bud will be in the same boat...
Today he and I spend the afternoon at DHMC where it was determined by his PCP that he was really having seizures. Of course Leo had to have one there to prove it to them. Such an obliging baby. Anyway, to make it short, we got sent home with two different medications. One to take daily (Keppra) and one to take as the last resort. Honestly, I can't say that any of this makes me feel relieved. If anything, I feel more terrified just thinking about administering a medicine as a last resort, and then calling 911 in conjunction because of the complications from the medicine itself. The reason they prescribed Keppra was not so much because of it's effectiveness, but because of it's relatively few side-effects, compared to others. I cried the whole way home. I feel so helpless when he seizes. There is nothing that I can do to help him, and it is so very painful and scary to watch him in that state. Every second feels like an eternity as I hold him and watch his face turn duskier and duskier. I feel like even the thing that makes him Leo, his vibrant little spirit, his essence in other words, is absent during the seizure. And I just hold him and pray that this will pass, that he will take some deep breaths and look up at me with his mischievous little smile...
On Wednesday he is scheduled for an EEG. The docs hope that maybe it will help discern the nature of the seizures so that they can treat them better. We shall just have to wait and see.
Please pray for our little lion, and for his family, as we try to see the light in the darkness and steer our ship through the troubled waters ahead. As always, thanks to all for your love and prayers!

Comments

  1. I hope the transition to meds goes smoothly and helps him. You all are in our thoughts and prayers every day!

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  2. I shared some tears reading your posting. . .Many prayers for you, Justin and our giggling little Leo. Smooth waters ahead :-)

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  3. We are praying for you. Love you guys. Wish there was more we could do. Marcy

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  4. Dear family! Let's hope and pray that these seizures are temporary, and that they are more like jitters in babies or shivers in children when they are teething or getting cold, and that your little lion will learn eventually how to overcome them. He surprised you so many times already. The conventional medicine is a necessary part of our broken world, but I just wonder if there is a Homeopathic way to help keeping these seizures under control? Any homeopathic wizards around?

    May Leo's guardian angel help you to navigate the ship! Love!
    MGT

    The pictures are irresistible - we can't stop smiling back!

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  5. Every morning when I finish reading the psalms, I spend some time with an icon of our Lord Jesus. And I tell him...."I bring you baby Leo and his dad and his mom and his sister Nika to place in your arms. Love them, and keep them safe.

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  6. Praying every night. Lord have mercy.

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  7. You are all always in my prayers - I just can't get enough of looking at Leo's beautiful face and smile - he's so precious.

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  8. He is so precious! I love his smile. we will continue to pray.

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  9. Always praying for your beautiful son and your family.

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