Life has been busy! I realized that I haven't updated in a few weeks. We are still in survival mode over here. We take life day by day over here.
MRI-
P went in for her MRI so that they could take a look at the outside of her digestive tract and to get a fuller picture of what was going on. Unfortunately we had to sit and wait for a long time because there was a patient in emergency that needed the machine so we got pushed back a couple of hours. She was a trooper! She did great during the wait and did great for the procedure as well! The only thing that I was unaware of going into this is that they would be putting a breathing tube in. I put my brave pants on and tried not to freak out about it! She was knocked out for 3 hours for the MRI. I, of course, was a wreck. I gnawed through a roll of tums and wandering aimlessly through the hospital and at one point sat in the lobby and stared at the ceiling. I am REALLY not a very patient person!!
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| A girl and the iPad and her blanket...happy baby! The earbuds didn't last very long. We forgot HER headphones. :( |
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| Watching her THIRD movie as we wait patiently for our turn. |
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| Beating momma at Go-Fish! |
Infusion #2-
P still fought the IV for her infusion. But once the IV was in, she did great! She had plenty of company for this infusion. Her Grammy and Papa Otto joined us and so did "her" Joe. They had a great time playing with an IV kit to help her become more comfortable with the process.
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| Dr. P & Nurse Joe giving the babydoll an IV. |
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| Goofing around! |
P has started her anti-rejection medication, Imran. Finally one medication that tastes good and that she actually doesn't mind taking!! She is still on the Iron (which she hates) and is now on Vitamin D as well. We will be starting some probiotics for her as well pretty soon. She is still drinking the Boost drink boxes. We are starting to get creative with shakes/smoothies in addition to drinking the drink straight from the box.
We met with the dietician as well. Right now, she wants to keep P on the least restrictive diet. Other than adding the drink boxes, we haven't made any changes to her diet at all. This could change as we proceed but the biggest concern right now is getting weight back on her and we will do that in any way possible!
This week we meet with the Immunohemotology unit to determine if P has an immune deficiencies. We also go back to do more blood work to see if any of our levels have changed. Keeping our fingers crossed for positive news on both fronts!!
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| TACOS! A friend of ours made dinner for our infusion day. P was a HUGE fan! She has been obsessed lately with tacos and pepperoni. Must have something to do with the spicy factor. |
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| Sometimes we let her do anything that makes her smile. She insisted on taking her baby, Mabel, and her stroller with us to the high school basketball game! Whatever makes her happy!! |
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| P and Momma built a fort. She decided that she needed to post a sign that no gorillas were allowed! :) |
