October 28th, 2015

Vala's 2015

Vala’s 2015

It has been an eventful day in the life of Emma.  We woke up this morning thinking that she had pneumonia and at different points throughout the day weren’t even concerned about the lungs and we are now back to only worrying about the lungs.

Gehring grandkids in front of the Make-A-Wish sign

Gehring grandkids in front of the Make-A-Wish sign

If you haven’t guessed by this point Emma has the doctors kind of confused again.  From 6 in the morning till roughly 11 a.m. Emma didn’t do anything other then lay in bed and complain about doctors and nurses, especially when they got close to her stomach.  She had an x-ray done in her room of her abdominal area, and really didn’t look good at that point.  Her oxygen level continues to be an issue even still this evening, but the good news is that they have been able to lower the amount she is given from a 2 to 1/2.  The best part of this story is that this evening from around 5 till 7 Emma sat up and ate a little and even participated in an Emma and Daddy dance party to Taylor Swift.  Those of you wanting to make fun of Brent, it was as funny to watch as you would imagine.  God has given us the gift of seeing our normal daughter for a couple hours this evening and we are grateful for that.

She really enjoyed the goats

She really enjoyed the goats

Now to what is actually wrong with her.  The radiologist still believe that this is a chronic issue of the lungs but that is because she has only had x-rays of her chest when she has a cough like she has right now, shockingly enough we don’t x-ray her lungs when she is healthy.  The pulmonologist is concerned about an area in the center of both lungs that appears to be enflamed as well as the outside of both lungs that appears to lined with fluid.  They have blamed that on the amount of fluid she has taken through her port but as we discussed that this evening we remembered she had only had a portion of a bolus done at the point they scanned her chest.  We apparently need to discuss that with the doctors tomorrow.  The doctors have two different explanations for this: one being that it is caused by a virus and two that it is asthma.  Last I knew we were going to treat it as though it is virus caused.  Dr. Abromowich as well as the Dr. on the floor this week are kind of thinking that Emma has possibly two different virus’ at the same time and they have taken a toll on her, this is the most probable answer that we think it is.

Had to sit on the Pink tractor again.

Had to sit on the Pink tractor again.

Some other things that have developed over the day include the platelet counts for Emma dropping back down to 19 which prompted her to receive her 3 platelet transfusion along with a blood transfusion for hemoglobin for this round of chemo.  If the rounds are going to get harder and harder as we go we are in for a long ride over the next half a year.

Emma seeing her friends from Frozen again.

Emma seeing her friends from Frozen again.

What we are going to choose to focus on tonight is that for almost 3 hours we got to see the real Emma again.  I promise you that we as a family truly understand what a gift it is to get to see our princess continue to grow and take on these challenges.  She is an amazing source of power, pride and love all wrapped into a 3 year old body and we love every second that we get to spend with her.  Even when she is struggling and not being herself.  It’s kind of scary how much she acts like her dad when she is mad.  Sorry to everyone that has to be part of that.