About Me

Palmyra, VA, United States
Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.

Friday, April 8, 2011

Week 26

Today is Friday. TGIF.  Things are going.  I finished doing our taxes on Tuesday evening. I hope they are accurate.  This would be the first time in like 14 years that I have done them myself.  I'm not completely confident of the whole Turbo tax thing.   Unfortunately, with the govt shutdown our refund will be postponed. It wasn't a significant amount but it was something to pay bills with.  Well I officially switched cell phone providers and pay month to month.  It keeps my bill low and affordable.  Its no blackberry but it does the job.  
Well the latest saga is that Jasmine has some severe separation issues.  When we went for Jasmines last chemo, it had become apparent that this was not just a passing thing.  She cried every time I left her sight.  It's been like that all week.  A struggle for all of us.  One for Jasmine to get over without making herself sick, for David to deal with chaos after my disappearing act, and for me guilt and worry for leaving.  She's regressing in some ways. Some of the things that have been happening recently have been known to happen to parents with children of a lesser age.  Since she's been out of school, her social skills have been compromised.  David thought these anxiety issues were only caused by me but today she proved him wrong.  When David took off to go to work, Jasmine started crying and pushed me to the door.  I let her see David get in the car, and she went ballistic  when he reversed the car out the driveway.  She has become so accustomed to us doing things with her that on Tuesday she let us know it. Tuesday, David got up early to take Jasmine to DC for a MRI and followup.  Well, I knew that this was going to become a problem at the door.  I decided to walk Jasmine to the car myself thinking I could fake her out. David got into his car and started the engine.  When Jasmine realized it was his car door handle I was reaching for, she got really upset.  She cried while pulling at my car door handle instead. She started stomping and hitting my car.  She fought me in trying to get her strapped into his car seat.  He said she cried and screamed for a good hour before she calmed down a little bit.  It was a long day for them.  They didn't get home until almost 9 pm and left at 6:30 am.  Wednesday was no different.  I went to work and she had managed to slide herself underneath the window blinds.  She pounded on the window crying.  I waved goodbye and left. David said she kept pulling David's finger to get him to open the front door.  The nice part is that I'm greeted with a nice hug or huge smile when I get home.  Unfortunately, I had to experience  a small taste of what David had to endure.  It was no fun trying to calm her down. 
Jasmine's doctor emailed David about her MRI and it was thankfully negative.  We also got our results from the genetic testing part of the PPB study.  It appears I carry the mutated DICER1 gene.  This gene it appears is the culprit that sent us on this journey.  It has certainly given me a lot to think about right now. However, I'm actually focused on the now more than the future when it come to this information.  I want to continue to participate in the study as much as I can.  I know that someday they will get to the bottom of this and I need to know that I'm doing something to help solve the problem.  It is unfortunate that there are so many issues with trying to get legitimate information when it comes to family history.  I wish I knew our family tree better or more specifically our family medical history.  I hate to think about how asking simple questions like "is their any medical problems in our family?" can provoke such a guarded response.  Maybe its just a old school way of thinking, a cultural thing, or just lack of knowledge.  I wonder what goes through their minds.   The question is asked with no ill intent but merely just a cry for help in gaining useful information that can save a life or even lives.  I encourage those who don't have a recorded medical history to do so or share it openly with your loved ones.  My history is a mystery for many reasons, some are just from a mere lack of medical care, and some are from denial (maybe to keep loved ones from worrying). It does nothing but hurt the ones you love more.   I truly think that even the simplest of things that were once overlooked could have been something greater in disguise.  My perception of things have changed greatly.  I don't have the cultural perception of "wishing bad" or "its all in your head" or trying to make others go through what I'm going through because I'm miserable.  My only intention is to be open and honest to make others aware. I care about what happens to others enough for me to inform them what is most definitely there. When I had my miscarriage before Jasmine, I shared that information with others after I grieved.  I shared it because no one would with me. NO one told me how common it was. Everyone shared the positives of an experience but never the negatives.  I think they should be shared equally.  Its a 50/50 chance.  You never know which side of the coin you'll be looking at.  The truth can hurt sometimes, but it can also set you free. 

Three more treatments.  Jasmine's eyebrows and eyelashes have hung out longer this time.  I wonder if her body knows the treatment is coming to an end. Thankfully she is growing and keeping a normal growth curve. She must be the only kid her age who likes mint.  HA! She loves mint oreos.  It must be from her mint flavored oral swabs that she has grown to like the taste. 

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