We had a fantastic Christmas, but I want to wait until my pics are done uploading before I share all about it. Tonight Daddy changed out Hannah’s trach like we do every Sunday night. Out with the old, in with the new. Trying to keep things as clean and sanitary as possible. I was with […]
[Continue reading...]This Christmas
25 Dec by
It is 2 am. I just finished Hannah’s overnight feeding and put on her humidified trach collar. Then I went into the hallway and looked over our ledge upstairs to our family room below. It is overflowing with Santa presents. We really overdid it this year with the gifts, especially for Ethan and Abigail. Let […]
[Continue reading...]Dear Santa
25 Dec by
Dear Santa, All I want for Christmas this year is a cure for Neuronopathic Gaucher’s Disease. Love, Ethan, Abigail, and Hannah’s Mommy
[Continue reading...]MY iPad!
24 Dec by
I was watching Ethan start playing with the iPad. Hannah heard it turn on, and she crawled over as quick as she could to see what Ethan was doing with it. It was really funny because she basically threw herself over his legs to see what was on the screen. Then, she proceeded to […]
[Continue reading...]Winter Cleaning
24 Dec by
The clock just changed to midnight. It is now Christmas Eve. We spent the day today (day before Christmas Eve) doing a major winter-cleaning of Ethan and Abigail’s rooms. We have this “tradition” that the kids rooms have to all be cleaned and really organized or Santa won’t bring them any new presents. You […]
[Continue reading...]Keppra and “the vest”
22 Dec by
Hannah had her Keppra level drawn at her Cerezyme treatment on Monday. It was at 9.0. Dr. Brown, Hannah’s neuro, wants it to be therapeutic at 15.0, so she is raising her Keppra dosing to 2.0 mL 3 times a day from 1.5 mL three times a day. The Klonopin will stay the same […]
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