Its been a month since my last update, we have had a ton of things going on. Cami is unfortunately still dealing with ear infections. They started in November and she has not been able to shake them despite being on multiple rounds of antibiotics and getting 3 days of rocephin shots. We have an appointment next week with her ENT and will likely have to consider tubes again. When she had them previously it was a terrible experience for all of us. I am not looking forward to that conversation however we can't keep pumping her full of antibiotics every couple of weeks either.

We did get the labs done for neurosolutions and received those results via telemed on 02/05. It was a ton of insight as to what's happening internally. We know that Cami is already at a disadvantage because of her genetic abnormalities however the doctor is very confident that he can get a plan of action set up to optimize the things that we can before getting in for the intensive and stem cells. He also said that it will be good to get started on this new regimen to prepare her body for the intensive and stem cells. I should have all of that information next week. I did schedule the 3 week intensive starting on 06/29 and put the deposit down. I know we are still very far from our goal however I wanted to be on the books with them and if we don't meet the goal by June 1 we can reschedule and will not lose the deposit. 

I will be finalizing the t-shirt design this coming week and we will get that rolling the link will be posted on my FB page. 

I have not heard back yet from the organizations that have reached out to me wanting to help. I am sure there are things working in the background. 

As always thank you all so much for all of your support this far on our journey. I am hopeful for what the future holds.