Lucas is now a few days into being up to his full dose of medication and is finally acting normal again. He was very grumpy and sleepy for the first 3 days, but today has been a bubbling well of joyful giggles (except for when he had to have "tummy time" and fussed until he was flipped back to his back). He pretty much hates the medicine, and complains every dose with sad fussing that makes me feel like I am evil forcing him to swallow it. He has had only one more seizure and it was the night before beginning his full dose (last Thursday evening) and it didn't time out at more than 5 minutes, so we didn't worry or have to call anyone or rush off anywhere. We are believing that now he will not have any more seizures. Ever. (Please, God.)
We are trying to get him enrolled with vision therapy, but we have to have a recommendation from his ophthalmologist, Dr. Lueder, to do so. His physical and occupational therapists work some with his tracking (and so do we), but a vision therapist specializes in such things and we think would be wonderfully beneficial. I don't know how long it will take for Dr. Lueder to get around to filling out the required paperwork. We'll let you know what happens with that.
Tomorrow, Lucas gets his second dose of testosterone to prep him for his hypospadias correction scheduled for November 21st. He tolerated the first dose pretty well and I managed to not cry or even vomit after giving it, though I felt a bit queasy for the first couple of minutes I comforted him while he cried. I'll be glad after I'm finished with it tomorrow and though I'm glad I know how to do such things, I don't think anyone really wants to do anything that causes pain to their child, even when it's for the best.
We meet with a different neurologist on Tuesday and will let you know how that goes. The two doctors assigned to Lucas' case at Children's are great, but if we need them, we only get them if they are on call. This other neurologist is at a different location, but if we need him, we can get him.
We'll keep you posted and try to get some more pictures and/or video up soon. He's the cutest boy in the world and I think everyone should be able to see so for themselves! :)
6 comments:
I'm so proud of the strength and fortitude that you guys have and that Lucas has. I can't wait to see you all for the holidays. You are in my thoughts and prayers daily.
Love,
Aunt Marcy
Make your mommy and daddy proud tomorrow, Lucas. Be strong, and you'll probably get extra kisses for it!
Try to understand that tummy time can be just as enjoyable as back time...
Love, Erica
God,
I pray that you are big for Lucas. That you sweep into his body and heal him of these seizures. I pray you are big for Esther and Mark. That you continue to hold them up and strengthen them. Thank you for the amazing work you have already done in little Lucas. Thank you for the incredible therapists you have give him. Please convict the eye doctor to fill out the forms needed for vision therapy.
We love you and thank you for all your blessings
hey guys, so glad to hear Lucas is doing better.
Thanking God for the wisdom to know that your heart and your love for one another could hold and care for such a treasure as Lucas. I am believing for miracles of healings, goodness and favor to be filling each of your hearts and your home this year. Looking forward to all the updates and current events. Have a most blessed and peace filled Thanksgiving and Christmas. In Jesus name. Sweet Esther, thanks so much for sharing so beautifully the love and the heartaches that bond a mother and her child.
How are you Lucas?
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