Thankful for all our Blessings

Happy Thanksgiving everyone!

We apologize for not updating more and being present on social media. Things have been a little crazier and busier than normal the past few Months. Elias has also had an up and down fall with health. Just a lot going on, typical with FA. He is, as always pushing through taking it all in stride and a smile on his face.

We just wanted to tell everyone THANK YOU for all your support. We are very thankful for the blessings in our life. Elias and his supporters are certainly the two things we are most thankful for.

Thank you for being with our family and Elias’ journey. We hope everyone has a wonderful and safe holiday season.

On Two Conditions

Elias! is home from the hospital this evening. Unfortunately, all is still not well. We were discharged today under the condition that we have lab work done to check his levels first thing in the morning, and should he start to feel poor again, we are to return immediately to the ER for readmission. So why is all not well? To begin with the doctors still have no clue what is causing this. They still believe it is viral in nature, but not every virus is traceable. There is one test pending which results should post tomorrow afternoon. The other issue is overnight Elias!’s numbers went backwards. His liver numbers initially were 10 times normal limits. Yesterday they were 2 1/2 times normal. This had him trending in the right direction after some broad spectrum antibiotics. This morning though, his numbers were higher again. They were not expecting this and it adds more mystery. If his numbers rise in the lab work in the morning we will be adding the liver team into the picture, hopefully outpatient. His white blood cell count was only 2 today and his ANC dropped drastically from 2300 yesterday to 940 this morning.

After a lengthy discussion this morning with his primary FA/BMT doctor we all agreed that Elias! is once again reminding us how medically fragile and complex he can be. We may never pinpoint the cause exactly, but the liver numbers can not stay elevated like this. Thus the possibility of consulting with the liver team. Let us just pray this resolves quickly on its own. We also discussed needing to reorganize, remind & tighten up on the protective immune precautions here at home. Especially with cold and flu season rapidly approaching. We have to do as much as we can to help in prevention across the board. These viruses and infections just hit his body too hard.

It is good to be home. There is something about the healing power, comforts of familiarity and general positive feeling that comes from being home. We are still very concerned about this and hope he heals quickly and easily. As always, Elias!, despite all the negative the numbers imply, is happy, smiling and playing as if all were well. That is what provides us with comfort and peace during times like these.

Bless you all and thank you for all the love, prayers and support through yet another chapter of this journey.

Hospital Admission, Mysterious Illness

Elias was admitted to the hospital yesterday with high fever (which very rare for him) and what we ultimately discovered was his liver enzymes were 10 times the normal limits. 24 hours later his numbers have come down about half. All cultures are negative so far and as usual, doctors are scratching their heads to pinpoint the cause. We just know the IV antibiotics and hydrocortisone stress dosing seem to be making things improve. The consensus is that this is a viral caused event. They have run all the known viral panels as well with all negatives. So it is untraceable with unknown origin. Ultimately though it doesn’t truly matter as long as it is treated positively. We will just have to reassess our precautions with Elias immune comprised state.

As of now Elias is feeling happy and playful. If that continues, his numbers continue to improve,and cultures remain negative we could bring Elias! home tomorrow.

Thank you all for the thoughts and prayers as well as your continued support.

Kindergarten

Elias’ calendar is filling up….FAST! Medical appointments, surgery, therapies, and school (homebound) are coming in faster than normal. Glancing at the ‘dots’ on the calendar is insane! In September there are 21 weekdays all but 2 of them ( one is Labor Day Holiday) have something scheduled, several days have multiple appointments. There is a little perspective on how non-stop things are.

Elias had his first official day of kindergarten here at home Monday. WOW, really? Kindergarten!Let that sink in for a moment……

He continues to be ‘medically homebound’ per his doctors and it will remain this way for the unforeseeable future. In addition to the various therapies he receives from school, a teacher comes to the home twice a week for an hour each time. As we mentioned Monday was his first day with the new teacher. It went….okay by Elias standards. He participated a little bit, though stubbornly at times, mainly through sabotage and compromise. To put perspective on the lesson, it took the teacher nearly the entire hour to get through the song/activity “Old lady who swallowed a fly.” She had a puppet of the old lady, which Elias had zero interest in, along with small stuffed versions of each animal/bug she swallowed. Communication is still the biggest hurdle we face when it comes to his education. While communication for needs and wants are thriving, the ability to reason with him does not yet exist. We have had some progress with “first this-then that” but with limited activity success-wise. It is definitely a priority and a challenge for everyone to figure out the best way to approach Elias. He learns, obviously, but in his own way and time. Not exactly the education model. Next week Elias will meet his new speech therapist for school. We are excited to see what Elias will achieve this year.

Video: Chatting with the 'Cat in the Hat

Here Elias! is "talking" to a DVD case with the Cat in the Hat on it. He carries the DVD cases everywhere, to bed, to the bath, to the hospital. They are his "babies"!

Overdue

It has been quite sometime since we posted here on the blog. Life gets hectic sometimes and things get pushed to the side and neglected unwillingly.

We have been blessed to have so many people follow Elias! journey. We aim to continue that and thank you all for your loving support.

In between updates you can catch bits and pieces on a Facebook page friends manage for Elias! Hope for Elias!

That moment you hear for the first time

Here it is! Video capturing the first moments of Elias! hearing for the first time with the implanted abutment for the BAHA