Saturday, March 10, 2012
Sunday, March 4, 2012
- Communicating our specific needs, leaning on others and asking for positive thoughts and prayer from anyone who willing to help.
- Creating wristbands for people to wear asking the recipient to simply think of Evan every time they glanced at it and share his story with others. We've distributed over 500 of them so far.
- Going online and placing Evan on prayer lists around the world. Ensuring services will be said in his honor.
- Asking others to have mass, a service, worship directly in Evan's name.
- Designing tee shirts and asking others to wear them on Evan's transplant day as a symbol of solidarity. The goal being, every single person who sees that shirt on that day will think of Evan. They may not know what the shirt is for, but I believe getting them to purposefully notice it will catapult them into our field of consciousness that day. We've sold 179 to date. Envision how many people you see in an entire day, multiply that by 179! Every family member and friend in hospital transplant day will have a shirt on. Imagine the buzz that alone will create; it's limitless!
- Working with alternative medicine via a Qi Gong Master, Psychic, and team of healers.
- Creating lists of songs to play to Evan now and when he's in the hospital. Reading the same stories. Making sure there are the familiar patterns developed to establish a calming environment. Taking pictures of things he enjoys so he can have a link to the outside world. Creating a scenario that will feel as normal as possible.
- Telling Evan every single day multiple times a day how much we love him. Letting him know how strong he is and how much he has accomplished in his life.
- Indulging Evan in his interests and ever expanding his awareness and accessibility to those things. Allowing him to fully enjoy his life.
- Meditating, exercising, eating well, enjoying family time, creating the most healthy and peaceful environment we can in this moment: resting, simply existing in this space.
- Vacuumming, bleaching, washing, and Lysol-ing every single surface in the house (including walls, ceilings, screens, switches, accessories). Instilling clean practices. Antibacterial soap for hands and dishes, new sponges, masks, gloves, air purifier, taking apart the vacuum and removing all old dust. Buying a lockable box to place all shoes in upon entering the house. Carrying antibacterial wipes and gel. Ensuring not one precaution is missed.
- Initiating and creatively working to increase Evan's protein and caloric intake while balancing his fluid intake with his blood pressures.
- Communicating every scenario I can think of with his transplant and dialysis teams. Being an active and instrumental part of his team.
- Making list after list after list to ensure we are always productive and always moving forward.
- Participating in a voluntary transplant program provided by the insurance company. This one fell right in my lap. When working diligently fortune often does align seamlessly in one's path; preparation meets opportunity.
- Not worrying about things out of my control such as the surgery; and the money needed to pay for our expenses while he's in the hospital; or anything I miss in my preparations. Trusting every need will be met. Everything we need will be provided and any energy spent on intangibles is energy wasted.
- Continuing to give back to others. It's with our deepest gratitude we are all alive in this moment and it's important to always give to the universe what we receive or need; the law of reciprocity is ever evolving.
- Taking the time to ensure you have the information you need to be of the best service possible to us. If people want to help I need to ensure we utilize you in the best way we can. It's important to give to you if we are to expect anything in return.
- Making sure you understand how much we love and appreciate you and your efforts. Without the masses, what Evan does, what this family does, would not be possible. You're an integral part of the team. Thank you for always being there.
- Continuing to take the next indicated action, whatever it may be. As long as we've moving forward, as long as we're doing everything in our power, the answers and support will come. They always do.
Thursday, December 15, 2011
Friday, September 30, 2011
Wednesday, July 6, 2011
Tuesday, June 14, 2011
Saturday, June 11, 2011
Evan is currently in a spica, full body cast, after a right hip reconstruction; one of the anomalies on his right side. The course is 15 weeks in a cast, one month in a brace, then rigorous physical therapy so he can learn to sit and crawl again then he’ll learn to walk! The cast comes off July 6th. This was a planned surgery which is always a good thing; another check off the list.
Evan has reached the minimum weight and height requirements to be eligible to receive a kidney transplant. At 21 months he is now 22 lbs. He was added to the UNOS Kidney Transplant List on June 3, 2011. This was a big check off the list!
He has an appointment with his transplant team to discuss the next steps. The biggest step is the construction of an incontinent bladder. He needs a functioning bladder before he can receive a kidney. The timing of both must be precise so a living kidney donor is ideal. His dad is a match and almost finished his donor work up. We remain positive that he’ll qualify as Evan’s donor, but multiple plans are in place in case needed.
Additionally, Evan was recently prescribed eye glasses for farsightedness. His eyes, particularly the right are crossed. The Dr. is hoping his eyes will relax with the glasses and his vision will get worse. In three months he’ll be re-evaluated. If all goes well he’ll get a different prescription and be done. If his vision remains the same he’ll require surgical intervention to detach the muscle and reattach it further back. His follow-up is at the end of August.
Developmentally Evan is behind, but he is well advanced considering the time he’s spent in the hospital. He speaks at least 35 words, uses sign language and even knows a few words in Español. His hobbies include: pointing at things and asking, “that?!”; blowing kisses; turning pages in books; playing, listening and dancing to music; throwing things on the ground; laughing; repeating what we say; meeting new people; and talking on the phone.