2012 Year in Review

How do you recap 2012? It was quite the crazy year for our family. It has been an extraordinarily stressful year that just never let up. Many points through out the year we were dealing with multiple high stress issues simultaneously. As always we simply stayed focused, prayed and let our faith guide us. Despite the chaotic year we know how truly blessed we are to have support from friends, family and fans like you. That too has propelled us through the thick as we continue to rise above the adversity. There are so many people to be thankful for this year. Through our busy schedule we are slowly getting thank you notes written to send out. We want everyone to know just how much we truly appreciate everyone and everything. We would not have conquered this year without you.

Here are some of the events for 2012:

This year we learned that Elias has chronic kidney disease (CKD). This was quite a blow as we learned that his kidneys are only functioning about 50% according to tests. The results from various work-ups lead to a major surgery on his bladder and kidneys in September. We also began a catheterizing program for his bladder via a mitrofanoff. Unfortunately as we write this blog the program (every 2 hours) is not working as they planned and we may be discussing more major surgery. More on this issue coming in an upcoming update. Fortunately, Elias on the outside is not reflecting the turmoil on the inside, as is typical with him and we are so thankful for that.

We placed the first part of the post earlier this year for Elias' BAHA processor. He was becoming so sensory in a negative way with the softband he was refusing to wear it. There has been a healing period required and our follow-up last week with ENT on this was very positive. Everything has healed nicely and we are hoping to place the second part of the post during Elias' next round in the operating room coming up very soon. Once placed it will be capped for 2-3 weeks and then we will be set to go with him wearing the processor. We have been warned that there will be an adjustment period and he is likely to be sensitive. This also doesn't mean Elias will "hear" as we do. We will resume the listening therapy and hope to see great strides over the next several years. We are excited and anxious for this chapter to begin.

Elias' communication overall has really flourished this year. His receptive language vocabulary has grown tremendously and he is using a combination of sign language, gestures and augmentative communication via the iPad to communicate his wants and needs. He has also learned how to tell us when he is NOT happy, in other words, typical toddler. His overall development despite all the medical issues this year has been amazing. He is so determined and it is so inspiring to watch him conquer challenges. The child never gives up!

We also had to change the type of trach tube Elias was using due to hyperventilation issues when on the vent. Unfortunately this was something the ENT/Pulmonary doctors really did not want to do because of the tenuous nature of Elias' airway. It took them some time but found one that they felt comfortable with that wouldn't compromise or hurt his airway. It works beautifully and he has responded well it. Sadly we learned a week after the switch the company will no longer be in business. So back to the drawing board for the doctors and at this time we are still waiting for a solution to be decided.

Elias also got to take another big adventure. Last year we "broke the rules" and took him to the zoo. This year we had the opportunity to take Elias to Florida for Katharine's Grandparents 50th wedding anniversary.  They have been so loving and active in Elias' life. They have visited us many time from Florida to see Nana's little "Rocky." It was a complete surprise for her Nana and Papa for us to be there. It took quite a bit of coordination and unfortunately Elias had some minor medical issues, but it was totally worth being there for such a memorable event. We received cautious blessings from Elias' medical team on the condition that we had every hospital mapped out on the route, and a plan that he would be airlifted back to Children's if there were any medical emergencies. Thankfully we only had the small manageable issues. It did remind us however why we minimize outings. If ever there was an event that the rules were meant to be broken, this was certainly it though. Sadly Katharine's grandfather passed away November 30th so it made the trip in retrospect that much more meaningful. Elias had a great time, especially the drive to and from. Many family members got to meet the little man for the first time. It was a beautiful event and adventure for Elias! We are so glad we were able to make it happen.


Possibly the most heart-warming and touching story of our year was the Home for Elias Campaign. Upon moving here we had been renting a house and the owner was ready to sell. We were in no position to buy and the prospects for a new place that would provide Elias a safe and healthy home environment was surprisingly and disappointingly difficult. Family and friends stepped in to raise money for this cause. A very kind and generous soul, who wishes to remain anonymous came forward and offered us a 10 year mortgage to keep Elias in the home where he has grown up and thrived. Obviously 10 year is a brief mortgage period so there have been offers from friends, family and supporters to hold future benefit fundraisers for Elias to help offset medical expenses, and to help pay the home off. Two family friends, Stace and Jessica have set up a Facebook group called Hope for Elias that they maintain and moderate to help keep everyone informed. They also recently set up a donation link there as well. Please take a visit, like the group (if you haven't already) and join us in thanking these beautiful ladies for taking their time to help our family and maintaining the group. We certainly appreciate what they do.

 
We are pleased to have survived the pressures and challenges that 2012 threw at us. We are anxious to put this year behind us and are hoping for a much simpler and calmer 2013. There will be issues and challenges to overcome, don't underestimate that, but hopefully not with the magnitude and speed as they appeared in 2012. Thank you all again for all of the thoughtful words, prayers and support. Have a safe, happy and prosperous new year!