We are still waiting for the call to head to Arizona! In the mean time we have been working hard to find a facility to do an intensive therapy program while we wait and will follow up with another intensive post stem cells. 

In the past two months Millie has completely weaned off of one of her seizure meds and has been much more awake! And of course this is relative to the amount of sleeping she was doing before which was about 95% of each day and now we are at maybe 70% which is back to where she was pre-seizures. But with the good often comes the ugly and Millie has been dealing with daily vomiting issues likely linked to her new diagnosis of Dystonia (google it).

 She also had a swallow study done which showed severe silent aspiration. The past 22 months of hard work put in on feeding has been all brought to a complete stop… it’s hard to accept but we know it’s for the best.

Looking ahead! There is still so much good stuff going on and we are so grateful for every experience. We continue to feel God’s presence and hand in all of this and for that we are the most thankful.