Tuesday, July 19, 2011
Great is Thy Faithfulness
Mireya's had a great week. Her white cell count continues to increase. It is a huge possibility that we can go home very soon, possibly within days (yes days). Of course I'm taking that with a grain of salt until the final word arrives, not to mention there is sooooo much to be done. This is a few weeks earlier than expected, but what a great exception to the plan. God is good!
Reya has continued to experience these 'growing pains', much to her medical teams delight. It's funny to watch her say 'my back hurts' as they look like they want to slap a high five and do the 'Engraftment Dance' which I have yet to see by the way. What hair is left on her little buzzed head is continuing to fall out. Her head is so pretty and smooth. Some nights she ask me to sleep with her and we just cuddle and rub each other's head. Some nights I want to rub that head and make a wish that she will go to sleep. She has been keeping strange evening hours, even without a nap in the day. So we are the crew that sleeps well into the morning.
Another pretty little smooth headed girl was admitted on the floor yesterday. Her name is Emily and she is also 4 years old. She will be having a autologous bone marrow transplant. An autologous BMT is where the patients own bone marrow is used. We went to visit her this evening to see if she wanted to do an activity with us. This in itself if a victory. Mireya has been up and very active in her 'own space', but going out on the floor has been a totally different animal. It usually results in major meltdown, so for her to 'want' to go down the hall and visit Emily was awesome. Emily was in the middle of dinner. My girl is still doing TPN, so the concept of actually eating has been a passing phase. The girls have planned to get together some time tomorrow and play in the Family Room.
I can count on one hand how many times we've strolled the halls. Venturing out usually includes some sort of bribery (I mean reward). Reya's new fascination is Disney World. I'm sure after all of this a trip to the Happiest/Most Magical Place on earth will be warranted. I don't know that it trumps the Ultimate Beach Vacay, but it's definitely up there. Ok...I digress again, so usually if we 'walk' to the Family Room we can look at Disney World Princess You Tube videos on the computer in there. Of course we could do this in the room on my laptop, but she hasn't figured that out yet.
In preparation for transitioning her care at home we need for her to starting eating. This week she has managed a couple bites of yogurt, a french fry and two packaged apple slices. That bone marrow requires more than that to thrive. So they are cycling her TPN off for a few hours a day to give her the chance to try incorporating some things on her own. We've had some great successes this week and know that Reya's progress will continue to be blazing trails because that's the kind of God we serve.
Sing the Praises to the King....All Hail King Jesus (He Reigns Forever)!!!!!