Medical and Zoey Update

This week was mainly a return to normal, but it felt really busy with lots of medical discussion.

Maddy had a good week with school, ballet, and time with friends. She loves life right now and is full of smiles no matter what we have planned.

Maddy and her best friend, Brooke

Maddy at the dentist

Alex is having some issues with increased stomach pain as well as some apparent problems with his TPN (IV nutrition) so I spent a good chunk of my week speaking to our dietitian, pharmacist, GI and nurse as we tried to come up with a solution on what we should do to make things better. I cannot say that we have come up with a solution but the discussions continue in hopes that we can get Alex feeling better again. It has been a long 2 years of almost constant pain and generally feeling unwell. We are anxious for him to get back to better days.

Both kids also saw hematology this week. Maddy has come such a long way from the days when we saw Dr. Beam on a monthly and sometimes weekly basis, because her blood counts were so concerning. She is doing great and is now seen just once every six months! Alex continues to do well in this area and his counts look much improved after his last blood transfusion and subsequent iron infusion.

Brave girl didn't even cry for blood draw

In other good news, our new insurance that we were so concerned about has been really easy to work with so far and they have been quick to get us approvals when needed. They are even working to try ad allow us to stay with all of the supply companies we know and love. Maddy's Hizentra (immune replacement) that was denied for several months last year was already approved and while she isn't thrilled to go back to being stuck with 4 needles a week, I am relieved to be able to keep her as healthy as possible and keep her from the decline that many mito kids experience with illness.

We had a visit from "our" Erin. Maddy was so excited that this time Erin and Greyson stayed till she got home. She loves babies as much as her mama!

Maddy holding Greyson

My Zoey update...I was thrilled to get a message from Beverly this week letting me know that Zoey has made enough improvement in her confidence that they have resumed scent training. We still have a ways to go, but each step forward means a step closer to home! We continue to raise funds for Zoey's Training and are so grateful to all have who stepped up to help us. Please continue to share our link so we can ensure that Zoey gets the full training she needs.
 Zoey's Fundraiser

Thank you to everyone who has reached out, prayed, and supported us. we are blessed you are in our lives!

Ali