Madi has hit a few milestones at this point -port implant, lumbar punctures, bone marrow samples, coming home from hospital, the end of steroids - but, Thursday marked the end of her first 28 days. To mark this grand day in Madi's life, she got to get a lumbar puncture and bone marrow sampling. Good times, huh?!
Here she is all hooked up to IV fluids and Vincrystine. I believe there was a movie playing and that blanket was in the warmer before they brought it to her. We get to the hospital test and treatment area an hour before the scheduled procedure. Plenty of time to get her prepped and ready for Dr. Rob. Since she didn't sleep well the night before, she fell asleep and stayed asleep as she was wheeled away.
Madi can't eat the morning of these procedures. Makes her a bit grumpy. So, we packed a couple of pieces of banana cake to make things all better afterward and have a more comfortable ride home. (I really need to do something different for a travel pillow.)
We will head in to the doctor's office on Tuesday afternoon to get all the result and find out what the next step will be in Madi's treatment. We did get good results Thursday on her CBC : Hemoglobin 11.5, platelets 90K and ANC 1260.
Many people ask us how things are going. I thought I would take the time to let everyone know how our days usually go. This isn't an 'oh, woe is me' thing, just a realistic picture of where we are right now.
The first part of our morning is consumed with getting the older 2 ready for school and out to the bus by 8:30. I fill my day with the normal taking care of kids and house that any other mother would do. In addition to that, is taking care of Madi. It's a lot like having a 43 lbs new born right now. She lets me know when she is hungry and I get her food - sometimes several plates of food. She lets me know when she needs to go to the bathroom and I help her get there - most times I carry her, sometimes she walks. She lets me know when her stomach hurts and what she needs me to do to help her manage the pain (time on my lap, tummy rub or foot rub). I help her get back and forth to the bathroom several times at night, as well. I'm grateful Kevin was thinking ahead when we got home from the hospital and put an extra bed in Madi's room for me. It makes it much easier for me to take care of her and not disturb Kevin's sleep during the work week.
Life isn't bad at this point. We could be dealing with so much worse. Our biggest frustration right now is having to watch Madi go through everything. She is such a strong little girl, though, and is handling this phenomenally. Now that she is off steroids we are starting to see more and more of her personality come back as each day passes. Such a blessing!
Since I have to be available for Madi and can't just head out the door to play with the little ones, I've been so thankful for the deck Kevin put on the back of our home. Bike riding and outdoor play is much easier with this space available to us. I've even lightened up a bit on some of the indoor play.
Next will be a basketball goal somewhere in the kitchen. :)
Here she is all hooked up to IV fluids and Vincrystine. I believe there was a movie playing and that blanket was in the warmer before they brought it to her. We get to the hospital test and treatment area an hour before the scheduled procedure. Plenty of time to get her prepped and ready for Dr. Rob. Since she didn't sleep well the night before, she fell asleep and stayed asleep as she was wheeled away.
Many people ask us how things are going. I thought I would take the time to let everyone know how our days usually go. This isn't an 'oh, woe is me' thing, just a realistic picture of where we are right now.
The first part of our morning is consumed with getting the older 2 ready for school and out to the bus by 8:30. I fill my day with the normal taking care of kids and house that any other mother would do. In addition to that, is taking care of Madi. It's a lot like having a 43 lbs new born right now. She lets me know when she is hungry and I get her food - sometimes several plates of food. She lets me know when she needs to go to the bathroom and I help her get there - most times I carry her, sometimes she walks. She lets me know when her stomach hurts and what she needs me to do to help her manage the pain (time on my lap, tummy rub or foot rub). I help her get back and forth to the bathroom several times at night, as well. I'm grateful Kevin was thinking ahead when we got home from the hospital and put an extra bed in Madi's room for me. It makes it much easier for me to take care of her and not disturb Kevin's sleep during the work week.
Life isn't bad at this point. We could be dealing with so much worse. Our biggest frustration right now is having to watch Madi go through everything. She is such a strong little girl, though, and is handling this phenomenally. Now that she is off steroids we are starting to see more and more of her personality come back as each day passes. Such a blessing!
Since I have to be available for Madi and can't just head out the door to play with the little ones, I've been so thankful for the deck Kevin put on the back of our home. Bike riding and outdoor play is much easier with this space available to us. I've even lightened up a bit on some of the indoor play.
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