August 25, 2011

Monday, my goodness Vegas was hot!  Kass & I headed to tennis practice around 12:30 since practice was from 1 to 3pm.  Ugh, hottest part of the day.  Gotta get the kids used to practicing at that time since school starts next Monday and that's about when practice is going to be anyways.  Kass had a bit of difficulties with the warm up so she sat down for the rest of it, then she tried to hit a couple balls, but she felt dizzy and had to sit again.  She was able to hit for about a good 45 minutes, but eventually she decided to go inside the club house in the air conditioning and wait with a friend who was having difficulties as well from the heat. I know that this is very frustrating for her, the fact that her body just cannot perform to the level that she was used to, but I marvel at her determination.  We feel that she needs to learn for herself the limitations of her own body, obviously with a little guidance.  It's an important part of growing up to let children make some of their own decisions to learn consequences of their actions.  I truly believe it makes them better adults.

The meeting with the counselor went well to implement a 504 plan for Kassidy's junior year.  We decided that she would go into school late to allow for more rest and more time to prepare her medication for the day.  She will only really take 4 core classes (US History H, World Literature H, Pre Calc H, &Anatomy/Physiology H) and 2 electives (Foods & Office Aid/Rest Period).  We decided that it would be better for her to take H honor classes instead of the AP (advanced placement) classes she was registered for since they require more of the student.  Unfortunately, because of her schedule she is not able to take orchestra, which is a little disappointing for her.   She has played the violin since she was very young and loves competing to be first chair whenever possible.  We will miss going to her orchestra concerts.

I also met with the nurse to explain Kassidy's situation and what steps we need to take in case of a seizure.  She was very helpful and helped me learned of some other 504 options I should add to the plan; like allowing Kass to leave 5 minutes early from class to prevent kids in the hallway getting caught on her tubing and maybe pulling out her catheter.  All in all, we feel we are getting closer to a smoother first day of school.

Tuesday, wasn't a good day at all for Kass. She wasn't feeling well at all and decided to stay home all day and rest.  On Wednesday she felt better, but was still feeling a bit of chest tightness.  When I went t drop off her blood sample at Quest I got a text from her saying that her chest was really hurting; so I called Marilyn at the Burzysnki Clinic and she told me that since it had been the second time she was experiencing this and it's not a known symptom of the treatment, that it would be good to take her in for an EKG, so we decided to go to Centennial Hills Emergency.

At the ER, we were taken in right away, but the waiting began when we were given a bed.  An EKG was done right away which showed normal results.  Blood samples were taken for a battery of tests including a D-Dimer test which showed a positive for a blood clot.  :(  This is always a worry since she does have the intravenous catheter that can clot at any time even if it used continously throughout the day.  An x-ray of the chest was done which again was normal so then a cat scan was ordered.  All these test showed no clot, but did show signs of pleurisy (inflammation of the lining of the lungs), most likely caused by the dang decadron.  This can cause sharp pains of the chest. So we were given a prescription for ibuprofen and sent home 7 and half hours later.

When we got home, we were wiped.  I didn't feel that tired while at the hospital, but as we both walked in at home we both felt exhausted.  Stress can really wear you out.  We look forward to tomorrow when we meet with Dr. Milne for her monthly checkup and talk about starting her on the natural anti-inflammatories instead of the decadron.

Kass & Thiago!

We are so thankful that we have been surrounded with family this week, since it's been a bit challenging to say the least.  My aunt, my cousin and the new baby have been here keeping us company, which has helped immensely with Kass and just keeping our minds busy and not worry so much about Kyle being gone.

One day at a time!!!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. 


~Eleanor Roosevelt~