Xander's Journey: A New Year

Happy New Year to all of our family, friends and followers! We are hoping for a much more CALM 2014 than what we had in 2013 and we are off to a great start (I know, it's only the first day, but I'm very optimistic!)

Home! and Hobbes is Happy!

Xander was discharged from the hospital on 12/26, after having a super duper Christmas! Thank you all who helped create the magic of Christmas for our children. With the adopt a family and generous donations from all of you, we had a great day and have been able to keep our family going financially. We calculated that Xander was inpatient for almost 6 out of the last 9 months and it has been a huge financial burden that you all have helped to offset! Thank you. Here is the link to our fundraiser, and we have received many donations not through this site too. I wanted to share this screen shot with you to give you an idea of what this means for medical bills, and please note this is without this most current 3 month inpatient stay.

2013 BCBS Claims - Oy My!

Many of you have asked how we are affected by the Affordable Care Act... we were sent the dreaded letter from Blue Cross that our insurance was going to end. Then they sent the letter again (thought I should act now), and then they even called to find out if we had gotten the letter. I was happy with their follow through. I worked with our agent and got a similar plan to what we have now, however, the deductible/max out of pocket increased over 300%! We are not sure how this is going to pan out for 2014, but thankfully Xander is covered by MIChild state coverage (still have to pay per month), so that helps a ton with the out of pocket hospital charges. Now so that we don't get sick... lots of Wellness Formula and Yoga (need to do lots more of this).

The past few days we have spent getting adjusted to doing all of Xander's care on our own again and getting caught up on our home life. WOOT! And getting some fresh air...

Currently, Xander is on TPN overnight, on a 10 hour cycle. Typically we hook him up to this when he returns from HBOT treatments at night. We have kept him on TPN for now because it is a guaranteed amount of nutrition that he is receiving via IV. Since his GI absorption is/was really messed up (that's a technical term), we are still unsure of exactly how much of the medication or food he is absorbing. Aaron and I asked to keep him on TPN for another week so that we can make sure he is stable as we add foods and change medications. This has been our mantra throughout the process this time (before we were thinking that he would be able to be "normal" again... but this just isn't the case!). So, now we are taking it very slow, and introducing new foods very carefully. This is a bond that we make to each other so that Xander knows that he is going to get the same answer from both of us. New foods are discussed as adults first, then presented to Xander. Before, we were letting Xander make some of these choices and we don't feel he can do that this time. It is too easy to just eat whatever he wants, rather than what we know works.

His menu now includes: Brown rice in all forms (rice cakes, rice crackers, rice pasta, rice noodles, sprouted rice), eggs (up to 8 per day), parmesan cheese, spinach, carrots, turkey slices, bananas, dark chocolate, blueberries, potatoes and Orgain. We need him to be drinking 3 Orgain per day in order to meet his nutrient requirements daily. This is the highest quality, most caloric dense, organic liquid food that we could find as a supplement. It tastes WAY better than Ensure and is made with high quality ingredients. And, the hospital prescribes it for him (it's $4 per bottle retail). I have been able to make him real dinners from these ingredients - smiles abound!

Xander has really enjoyed cooking his eggs and eating a lot. He has has easily gained 5 pounds since last week and is just simply enjoying the foods he can eat. I have been keeping the cupboard stocked for him. Keeping him up and moving is really important to a speedy recovery and he enjoys his friends a lot!