The past week or so has been a bit low for us after suffering a key advocacy defeat on a very important issue for Elias. As we went through the paces of contesting the decision the more people we discussed this with, the more demoralizing this whole effort has become. Even his medical team that strongly recommended this is struggling to come up with the next step.
This process has consumed much of the past week. The more people we end up talking with the more depressing the issue has become. Without going into details, the bottom line is as parents and advocates you can trust that no one has your child’s interest at heart. We have learned that even if you follow-up proactively to ensure all is being done in a timely manner, you must go a step beyond and request proof. A person’s word is worth nothing! Fortunately for us we have some of those words in writing via email communications. That may be the one thing that brings any form of justice out of this, but that is unlikely. We would encourage every parent that advocates in any manner to make written communication the preferred method. Any verbal communication should be followed-up with a written synopsis initiated by yourself to summarize your understanding of the discussion and the intended actions. Ask for clarification that your synopsis and understanding is correct. This will provide evidence of misunderstandings & potential deception, because as in our case writing it did not create a conscience of accountability. We were told what we wanted to hear, and deceived on how things were being handled. We have learned the timeline we have been lead to believe was not accurate and it appears the request for more material was not requested by those involved in the decision. This put us up against his age out date which was used as one of the main points for denial. So was the extra information needed? That is something we can not get a clear definition because it cost valuable time that potentially contributed in part to the denial, which is very ironic. It was a lesson learned, but at an expensive price. As tough advocates we have just been made even more vigilant. We hope that our lesson will reach other parents/advocates and they will benefit in a positive manner. It really doesn’t matter what the advocacy is for, it applies to all scenarios.
Elias has been better this week. He is still battling some minor respiratory issues, but at least he is breathing on his own. We have had some varying weather systems moving in and out of the area the past week and have noticed it affecting Elias. This is something we have seen in the past but have never been able to fully connect. So we are tracking that again. There have been some days that he just lays there and doesn’t do much. We did have a GI appointment yesterday. He has decided he wants to scope Elias again. Mainly he just wants to make sure everything is looking fine on the inside and that his esophagus does not need to be dilated. This will happen with the next airway bronchoscopies in a few months to minimize the times he has to go under anesthesia. His weight has dropped a little again despite increasing his total daily volume. The extra calories have helped his energy level though, that is a positive. Elias dropped just below 18 lbs which is about 8.3 kg. Since July 2010 he has been hovering around 8 –8.4 kg. That is 17.5-18 lbs. On Elias’ 2nd birthday, last May he had just broken 17 lbs. So it seems we are on pace to only have gained 1 lbs in a year and believe it or not he has only grown 2 inches! That surprised us as we reflected back on the numbers. To put that size in perspective, that is about the size of a 9-12 month old. We do not mind that Elias is, well tiny seems appropriate, we just need him to grow for his airway to even have a chance to improve. The FA endocrinologist say Elias is even small for FA standards, but they are hesitant to pursue any therapeutic options at the moment. Maybe that is what makes everything he does look so darn cute!