Happy New Year (almost)!

Well, we are still hanging out in the hospital.  Alli is looking much better.  We are just waiting for her oxygen to catch up with how she looks.  The doctors have told us that the virus can run a course of 8-21 days.  This seems to be on the longer end for her, but we are patiently waiting it out.  The good news is that they feel her lungs will re-inflate and work just as well as they did before.  They just need some extra help right now.  She is off of bi-pap and on high pressure oxygen.

Jason has been spending days at the hospital and I have been spending time with Samantha, Linda, and Jay.  Yesterday we took Samantha to an indoor play area and she had a blast.  The weather here has been cold and rainy, so we needed to get her out of the house.  

Friday, while Jason was at the hospital, I met with the nutritionist regarding a blended food diet for Alli.  One of the reasons we felt strongly about putting a g-tube in was the ability to put Alli on a more normal diet from whole food sources (not to be continued with Whole Foods sources - which would really strap the budget - but I digress).  We are hopeful that this will help build her immune system, improve her reflux (hopefully getting her off of reflux meds), and help to regulate her digestive system (in other words, help her poop more efficiently and regularly :) ).  Initially the nutritionist and I had a different approach as to how to achieve a healthy and balanced "home brew."  However, we worked our way to common ground.  Her initial suggestion included some carnation instant breakfast and a wide variety of jarred fruit and vegetable alternatives.  I'm not sure why anyone would take their kid off of formula and put them on a "home brew" of processed food.  What is the point of that!?  So, I explained (patiently as possible) that we weren't interested in a processed food diet, and that we were hoping to put together a 'brew' with as many raw and organic ingredients as possible.  So, we found common ground at a brew that includes whole milk, kefir, quinoa, fresh fruit, fresh vegetables, kale, flax, evoo, juice, hard boiled egg, etc.  MUCH better.  I also managed to get a recommendation for a powdered whole vitamin, as opposed to her suggestion to just crush up a flintstones and call it a day.  By the end of the conversation I believe her exact words were "you don't seem like the parent who wants to use the flintstones - so here is another alternative."  I'm glad we finally got on the same page.  

So now, the OCD side of me kicks in.  I have my Vitamix, which we were able to get at a discount thanks to some help from our GI.  For anyone that has a medical issue that requires blended food - Vitamix offers a 25% discount and ships for free!  I have my starter recipe with all of my raw and organic foods.  Now, I am obsessed with achieving the perfect combination of the most healthy foods possible for Alli.  Ridiculous.  Just about any combination of fruits and vegetables will be better than the formula we are giving her and at some point, I will settle down and come up with a good rotation of mixes, but I like to get things right the first time.  So, now I have to get my head around how and where to start and just bite the bullet and do this.  It will be best for her and I think may actually be good for the family, in general.

We hope everyone has a wonderful start to the New Year!  We look forward to the coming year with great anticipation as we await the arrival of our little guy and the celebration of Carrie and Luke's wedding...and well...everything else that will happen in between.  We have been so blessed - truly.  Samantha is thriving at home and at school and is so excited about the arrival of her little brother.  If Alli had undergone anything similar to this last year - before or after her heart surgery - it would have been a much different situation.  So, despite the frustration of being in the hospital, we have the balanced perspective to know that we are much better off now than we would have been then.  Her seizures are settling down and I'm confident we'll get to some (hopefully permanent) level of seizure control in the coming months.  Her heart continues to show good function.  There is much to be thankful for in light of our immediate circumstances.  And though we had different plans in mind for our holiday break, we are fortunate to not have had to juggle work in the middle of all of this.

Happy New Year!