Saturday, April 27, 2013
Cupcakes with various cancer tags
Display for finish line- streamers, flowers, pinwheels, PVC pipe.
Warrior wall -
Food - pulled pork/buns/chips/desserts/ drinks
Use colors on noodles - ribbons - decorate with lavender for all cancer. Shelter - use plastic and 3M hooks - tape.
Friday, April 12, 2013
Wednesday, April 3, 2013
I would like to nominate my cousin Cassie.
4 1/2 years ago, she gave birth to Baby Braxton. Braxton was born with Gastroschisis. That is when the intestines are on the outside of the baby's tummy. The doctors worked to get his bowel back in, but it did not all survive, so they had to cut out the majority of the bowel.
Now he is a "Short Gut" kid.
He was in UNMC for 8 months before he ever went home.
Over the span of his 4 1/2 year life, he has had 30+ surgeries. He seems like a vibrant healthy boy - but if you lift his shirt - you know different. Scars leave their mark everywhere.
Braxton never got to eat as a baby. His nourishment has come from TPN (total protein nutrition) that is fed through a Central Line to his heart that delivers the TPN to his body. And if you could see inside his body, you would see a liver that is at stage 4 of liver disease because of the TPN.
He has a G-button that allows Cassie to put a special formula directly into his stomach. He has in the last year or so been doing Feeding Therapy where he has been working on learning to eat by mouth. The skill of chewing, pushing food from side to side in his mouth and swallowing are not natural. Braxton has come leaps and bounds on his eating skills in the last 3 months!! He has been able to cut way back on time needing to be hooked up to the TPN. He has to have an intake of 500 calories 5 times a day at this point. They continue to work towards increasing that week by week. If he doesn't get enough calories by food, then he has to be hooked up to the TPN more.
Braxton was just "released" from feeding therapy this week!!
TR is Braxton's daddy. He has been such a rock for Cassie and Braxton - keeping bills paid and with them as much as possible. But, because he has had to work all the time, Cassie has had to do most of Braxton's care on her own. TR also has a country band that on the weekends across the state.
Cassie had gone to school to be a CNA before she got pregnant with Braxton. Who knew that her schooling would play such a HUGE roll in taking care of her own child!!
They have been through a lot over the years - but they are still so strong! I just am so humbled by Cassie's routine day after day. But for them, it is their normal.
Cassie is an amazing mom and TR is an amazing dad! Braxton is their life (as we can relate). They hope to have another child some day, but for now B needs Cassie's attention nearly 24/7. There aren't many others (besides their part time nurse) that could truly manage all his medical needs day in and day out. Cassie is his full time nurse, his feeding therapist, his everything. No one else knows when and how much and what meds he needs every day. No one else knows how to measure out his food to determine his calories. She is an amazing woman and mom! She continues to believe that God has a purpose and did indeed pick them to be Braxton's parents, even on the days that she is tired or worried, she trusts in His plan.
They still have to make numerous trips to Omaha to UNMC (especially at the first sign of sickness because of B's central line), so I know that gas cards for fuel would be helpful. They all love country music, and have iPods, so maybe iTunes. Cassie has taken up knitting and crocheting, so yarn.... They are all country - camouflage, cowboy hats, and bling! Braxton loves the Cars themed stuff. He is one little smarty pants... Cassie has done preschool type interacting with him from day one! I don't think he can actually read yet, but he is so darn close. So any learning preschool level things would be nice for B. Huskers or Steelers are their favorite sport teams. Their house is completely cowboy!
Thank you for considering them for a Love Bomb!