Wednesday, February 1, 2012

Ruby's Turn

Little Ru Ru is getting a blood transfusion today. Her hematocrit has been hovering just above the level that they like to transfuse, and she dipped down to the transfusion level today. Our nurse was able to get her IV in one stick and she will get two rounds of blood 8 hours apart. She can't eat for 24 hours, so she will probably not be very happy with that. I was able to give her her last bottle at noon today before they started giving her the blood. She is taking her bottles really well. She and Millie are both getting 2 bottles/day. Millie only took half her bottle yesterday, before she got too tired. Our nurses say that Ruby continues to be the feisty one! She weighed 3 lbs 11 oz today and Millie is 4 lbs 2 oz!

This is a picture of Ruby today. She is wearing a little hospital gown that Scott's Aunt Charlene made her. This was after our nurse got her IV placed.

Millie taking a snooze.

Although I worry about the girls all the time, Jake continues to be my biggest worry. He has had several episodes of "abnormal motor movement." It's hard to explain but he will kick his feet, slap his arm and roll his head around in repetitive movements. He has done it twice at school and once at home, but he did it for three hours straight at home. I am not convinced that it is not seizure activity, but his neurologist thinks it is a reaction to the new seizure medicine we started him on. He has been on it a few weeks and his mood has been so much better. The last two weekends have been great, because normally he cries/screams for 4-5 hours/day, and he hasn't done that, but now we have a new problem. We have stopped his medicine and we are giving it a few days to see what happens. If the episodes stop then I guess it probably was the medication. Today he had a small episode at school, then he was very weepy and almost listless at home this afternoon, and he has not been eating much. I don't know what to think. It is heartbreaking and scary, so we could use your prayers that we can find a solution.

Emmett has a cold this week. It only slowed him down for 1 day. Here he is taking a break with our dog Avery. Avery will be 13 this Spring and she is so sweet and lets Emmett crawl all over her.


  1. EK - i am so sorry to hear about jake having these episodes. i will pray that God can bring you and your doctors an answer and a solution to this scary situation.
    glad to hear that the girls are continuing to gain weight.
    i love the picture of emmett and avery!

  2. What heartfelt posts Elizabeth. Continuing to pray for your family. It is great to have you home, neighbor.