This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Wednesday, March 12, 2014
Not sure how to get use to this new life
Life at home has been nothing but a roller coaster of emotions. I don't know how we are going to get through this. Yesterday was so full of unpacking suitcases, laundry, finding places for all the new toys the kids acquired, going through 30 days of mail, cleaning 30 days of dust and grime, and learning how to manage my medically fragile child and give enough attention to the other two who are desperate for mommy and daddy. I'm finding it incredibly hard to keep 6 hands away from Jayen's head. Brilyn has, on multiple occasions, smacked him or head butted him and each time I cringe and cry, hoping and praying that it didn't do any damage. I'm on pins and needles constantly watching him. I am questioning whether everything I see is a seizure or just Jayen "drunk" on the meds. This new Jayen is hard to get used to. Don't get me wrong, I LOVE that he is sitting down playing, eating, and coloring. I love that he isn't bouncing off the walls, but I am wondering when my Jayen will come back. Will he come back? Will he ever be the same boy he was before? I cry every time I look at him because I love it and hate it all at the same time.
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