Hello?

This week has been horrible. It began on Sunday with the sudden passing of an FA patient from complications of the 2 bone marrow transplants he had a few years ago.  Every time another FA patient earns their wings are just somber reminders of how devastating and deadly this disease is. Our prayers are with the Barbier Family as they lay Justin to rest this week. Justin's mom has been a huge support to us and through Elias' journey. Our hearts are very heavy for her loss.

On to a very serious issue and potentially disastrous problem. We received a letter in the mail yesterday that was to notify us that Elias medicaid was being discontinued due to insufficient information provided during annual re-certification. We are not even sure what was supposedly omitted? We have left two voice mails requesting a hearing on this matter, but have yet to receive a response. Tomorrow is the deadline to request a hearing with continued benefits until a final decision is reached. The letter was dated July 11, 2011 yet we received it on July 18, 2011. It should not have taken 7 days for us to get this first off, but the hearing deadline is spelled out in that letter as 10 days from the date of the letter. I will call again in the morning hoping to get a call back or better yet an actual person. If they do not call back tomorrow I am not sure we would be able to get the hearing. This is absolutely critical that Elias maintain his medicaid. Elias has capped out long ago of our primary insurance provider. Without it we are finished and Elias needed treatments are in jeopardy, not that we are not already in financial turmoil from all variables and medical expenses anyway over the past 3 years. A lapse in coverage even briefly could create issues for supplies, equipment and services. Very stressful and worrisome this is, until we get it resolved.

I can not remember if we had mentioned this in a previous update so forgive the repeat if so. It appears the school system has misplaced or temporarily not filed Elias paperwork for enrollment. Without it he can not begin services. This was turned into the guidance counselor at the school prior to the IEP meeting which was April 28th. While it is irritating that the school system office does not have this, our primary concern is the fact that turned in included copies of Social Security Card and Birth Certificate required to register. After a week to allow them time to investigate and locate the file, this week they are dodging my calls and not returning voice mails.

Which leads me to another point. We contacted GI 2 weeks ago about concerns we had. It took them a week to return our call and then we were told his GI doctor was on vacation. If they had been more timely in returning the call that wouldn't have been an issue. So medication was ordered for a week to get by until the doc returned. We were told they would call yesterday to check in and get a report to pass on when the doctor returned today. You guessed it no call. I even asked them if I needed to call in when they originally set the expected phone call up. They said oh no we are making note of it now that won't be necessary. Apparently it was. Today has come and gone without a call as well. So tomorrow first thing I get to call and find out why and what the plan to treat Elias is. His speech therapist was also a no call no show today and while I have left a message with her, again still no call back. Bottom line is that it is becoming increasingly more common for his providers to just not call. Why is that? Are we that busy and if so why would you set an expectation of calling someone and just ignoring it. That is just plain rude and unprofessional, especially when it has been more than one day overdue. I know this is a big rant but quite frankly I am disgusted by the manner in which people provide service and hap-hazardously return phone calls. Sorry for the rant I will end it there.

If all that wasn't insane and hair pulling enough Elias felt like we needed a little more stress. He has begun yet another cluster of breathing episodes. While the number of times he has stopped breathing has been lower than normal (thank God) with everything else, particularly the medicaid problem, everything is a bit more charged. Poor Elias. We hate seeing him like this. It just sucks the life out of him. Hopefully the week will improve, but for now we just watch over Elias and try to go on with business as usual.

Raspberries & Smiles Are Back

Yesterday yielded some positive points for Elias! He has started doing his raspberries and flashing smiles again. Those were welcomed sights and sounds. His color is beginning to return and the area around his eyes are beginning to look closer to normal. Late yesterday evening we even caught Elias “standing” on his knees a few times. You could tell he felt woozy in the head so all those attempts were short lived. At least he is trying. Hopefully in a few more days he will be sitting and standing up again. We were able to for-go any pain medicine as well. That was a little surprising to us considering his incision site is open. We realized we neglected to mention that part in previous updates. They purposely left his incision open to help it heal faster and reduce the infection risk. They used the same incision line for both the surgeries. So we are packing and covering it with a wet to dry gauze. This is certainly slowing down his mobility progress a bit. We expect there to be more signs of normal life returning today as he gets stronger each day. We increased his continuous G-Tube feeding rate slightly yesterday as we begin working him back towards getting him time off the feeding pump and his old regiment.

One final thought and prayer request to share. We mentioned Joshua Lytle in our previous update. Sadly he passed away at 6:15 pm Thursday. As his mother stated, “FA may have claimed his body but not his spirit. Heaven has gained a new superhero angel who glows green and shoots fireballs.” Please pray for peace and comfort to surround this family. We Thank You!

The Need for a Cure!

This has been a rough weekend mentally. As you saw from the site announcement another FA child has gone to heaven. 6 year old Ashlynn was such a fighter. Her bone marrow transplant and the medications that go with it really took their toll on her organs, particularly her lungs. She passed away on Saturday afternoon, according to her mother’s facebook posting, in her arms around 1 pm. She just had a trach placed on Thursday in hopes that it might help her overcome the lung issues while on the ventilator. We reached out to her parents offering support and help since we had been down the trach and then the ventilator path with Elias. It was sad to hear and really created a somber mood for the weekend. It is such a senseless pity that these children have to suffer as they do, but they all do it with such warm loving and inspiring spirits.

Last weekend was a Pink for Bravery Day in honor of a family in the United Kingdom who was celebrating the life of their daughter they had lost a few years ago from FA. It began as something they just did among themselves, but this year it spread to the rest of the FAmily. All day on facebook people were sending photos to this family of them dressed in Pink. It was touching to see, we can only imagine how the family felt. There may only be a few of us families in the world with FA, but it is probably one of the most caring and supportive group of individuals, most of whom we have never met, brought together by an unfortunate disease. Which FYI in case you missed it we got an official tally on the first International Fanconi Anemia Day, $135,000 raised for research! That is quite an effort for a first year. It is going to take efforts like that though to beat FA! The past few weekends have been a somber reminder of how important it is to support research for FA. Our scientist and doctors have made incredible strides, but there is still so much yet to learn.

Thanks for taking the time to listen to us about this. We try not to dwell on the life-threatening side, but when it slaps you in the face with each passing child and adult it is difficult to ignore. It is day like these where we hold each other close and thank God for the days he has given us and try to above all else be true to being a family full of love, hope, and each other.