Jace has been so sick. He has been sick for 2 weeks, pneumonia and strep. It was rough seeing him sick, and mentally and emotionally draining knowing it was pneumonia. My heart struggled with that a lot. His fever is finally down, still a lot of coughing and a bit of wheezy breathing. They have him on an inhaler now as well. Trying school today, we will see how it goes.
Emily's elbow is healed she's back at her violin. She had seating auditions yesterday and is working hard for their upcoming concert.
Benjamin. My little Benjamin. He's struggling. His doctor changed some medication dosing to see if that helps any. He is also referring Benjamin to a psychiatrist to get set up with her. Also he's sending him to a neurologist (Eli's old neuro before we moved to KC) to make sure that Benjamin isn't having seizures or anything neurologically that we may be missing. Lastly, and most painfully, he is sending Benjamin to a geneticist (yes you guessed it, Eli's old geneticist before we moved to KC). He suspects that there is an additional diagnosis, and he suspects that it's what has been talked around for years. My mind knows that EVERY single person is affected differently. My mind knows that it's NOT the same as Eli. My mind knows it's different. That doesn't change the fact that my heart and soul are screaming in agony that I simply CAN'T go down this road. We have agreed to the referrals and will move forward down a road we have already travelled knowing that refusing to move, won't change it; but it doesn't change me from wanting to dig in my heels and not move.
Ariana is busy as always with school. She has stayed happy, healthy, and injury free. Only change with her is she is now the proud owner of a toothless smile as the top middle came out! She's excited for her 7th birthday on Thursday and is still picking what she wants for her birthday dessert!
Bob and I have a medical family that we met yrs ago, that we are helping out. We met them when Eli quit breathing at RMH in KC in January 2011. They brought us up bags full of food to the PICU and we all immediately hit it off. They had 5 kids, their youngest being their medically complex. They have recently been hit hard by life. The husband/father is very sick himself, and they have lost their home. We have borrowed 2 of their children as of yesterday, and 1 more as of wednesday to allow them to only need 1 hotel room. That takes our kid count in our home to 7; ages 14, 13, 12, 10, 10, 8, 7. We are thankful that we are able to help, and are hoping that this gives them the breathing room they need to be able to find a new home.
Me. Where am I? I'm training for my 1/2. I'm putting in quite a bit of miles and adding in strength training workouts as well. I'm going to do this. There is no doubt in my mind.
I've had a few emotionally rough days lately. Thoughts of Eli and that night have flooded my mind. When Bob & I were in town we were able to go and spend a bit of time with Eli. It was very nice!
So all in all were are we? We are busy. We are overwhelmed. We are still taking it day by day. We are pushing thru for ourselves, for our friends, our family, and for our beautiful little boy. We are holding strong onto the hope that life MUST settle at some point, I just hope it's soon!
No comments:
Post a Comment