I am finally sitting down to write another update as we sit at our hotel after finishing day 1 at Duke University (Childrens) Hospital. It feels surreal that we are finally here and tomorrow is the big day (stem cell infusion) that we have been anticipating since we found out about Avery’s HIE diagnosis. 

Another apology that I’ve left everyone hanging on recent updates (time seems to fly by, yet standstill at the same time). We’ve been really busy the past few weeks with a lot of updates and (great) progress leading up to this trip. I will backtrack to give you some of the latest updates and then finish up with how our Duke visit is going and what tomorrow holds for us. 

Avery’s genetic fibroblast (skin biopsy) came back and is consistent with Pallister-Killian Syndrome. PKS is a chromosome abnormality when a tetrasomy of the short arm of chromosome 12, and occurs for no known reason.  If you’re interested, Pkskids.net is a great place to learn more, and we will answer questions the best we can with what we know so far. 

We have been able to space out our feeding specialist visits because Avery has done so well taking her bottle and has even gone up a bottle nipple size. She has gained 1 lb 10 oz in 2 weeks (roughly 1.8 oz a day) which puts her at a whopping 13 lbs 15 oz now. Which really reaffirms that she has been eating so well and am glad we have gotten her on a bottle, hypoallergenic formula, & reflux med that seems to work! 

We had a follow up EEG which unfortunately still showed abnormal background brain activity and will keep her on the seizure medication until further notice. We plan to transition her to a different medication at our appointment in September that doesn’t act so much as a sedative and will have less long term side effects. 

Avery got her little hearing aids one week ago today. What an amazing day this was for our family! Seeing her face light up when she heard our voices so clearly for the first time brought me to tears. We are still adjusting to life with our “new ears”, but I know they are going to do amazing things for her and her progress! I’m sure there will be some days she may wish she didn’t have them in our crazy household! Big sister had the honors of picking them out, so they are “pink rainbow glitter” hearing aids (naturally!) We can’t go without thanking 20/20 hearing, Lions Lighthouse, & PENTA for all of their efforts in making this happen. They have truly been angels to us throughout this entire process!

Now to the main event - our big Duke trip! As I said earlier, we are hoping this is the first of multiple trips that we make here (we will find out more tomorrow when they actually have her cord blood in hand and can tell us how many treatments we should expect from it). Today was a long day, but mainly consisted of admin work, physical and vital check, and getting our itinerary for tomorrow. Personally, the highlight of my day was running into the legendary Dr. Kurtzberg in the lobby on our way out. She is the incredible doctor behind all of this research/development in stem cell therapy (specifically in brain injury). She has invested and dedicated her life to this and we cannot thank her enough for what she has done to help Avery (and so many others). To get to personally meet her and thank her in person was so rewarding! 

As for day 2 (tomorrow) - We will arrive there around 11am and the IV team will come to place her IV port. Her stem cells are scheduled to arrive from the lab around 12:30pm and the infusion is scheduled for 1pm. They expect our day to be about 4-5 hours long from start to finish. Much better than we anticipated it to be! And if all goes well, we can go home the next day. In the grand scheme of things, this sounds so short for such a miraculous treatment! I am truly blown away by this hospital, the medical staff, and the quality of care/treatment they offer patients (Avery). We are forever grateful they have accepted her into this program and truly think that big things can come of it. As always, to God be the glory! I promise to update you all after we get home!

“Before I formed you in the womb I knew you, before you were born I set you apart” Jeremiah 1:5