Pushing through- Our last day of testing in Milan

Wednesday we woke just in time to arrive to the hospital by 8:40 and started our long last day here.

It’s hard, and emotional to think that we have completed our part in this incredible opportunity of a clinical trial.

I have so many picture like this from over the years 💙💗

The day started with spirometer testing, which we have never had before. I’m so glad to have had this testing because when Eli gets sick sometimes we notice that it seems he can’t express things very well from his chest. It’s good to have a base to know where we go from here.

We got to see Sam who we have known since the beginning, and although we both don’t know how to speak the others language well, love and kindness is universal and Sam has always shown us that for years.

Off to some more neurological evaluations in which the kids seemed to do really well with. Although I personally have questioned Eli’s surgery at times, Marina showed us a video of Eli walking at CHOP taken before his surgery and it reminded us just how poorly he was walking. No one was even sure HOW he did what he did at that point.

Eli had his Visual Evoked Potential next, which he is not a fan of.

Many times during the weeks we had to just keep telling them that this was the last time and to push through. Sometimes their moods would not be great and the anger would show, but knowing we were almost finished seemed to make them be able to push through a bit easier.

We went down to the pizzeria for our last pizza from under the hospital and it had to be quick before we went back up for Ella’s VEP.

One good thing about having Eli and Ella both here is one of them can always see what the other is going through first, which thankfully made this king test go much easier for Ella.

We also got to say goodbye and thank you to Evan who is the gentleman who has done the kids nerve conduction testing over the last ten years.

We went back to the third floor, for more blood work and to wait to see the physio again.

We had some time after this before we visited with Dr. Aiuti so we decided to sit outside and enjoy the beautiful day.

Around 4:30 we went back in to see Dr. Aiuti who is the clinical research director here at San Raffaele. We are grateful to have had some time with him to discuss the kids and say thank you for the opportunity to be here. He has also been with the kids since the beginning with Dr. Biffi, when she was here.

On the way out we were reminded just how lucky we are and also how far gene therapy has come since we started here. There is a wall of pictures of children that have had their lives changes with gene therapy here at the hospital. It’s always a joy to see this wall and I have shared this numerous times before. Yesterday it took on an even more emotional meaning as we have reached the end of our journey here. Seeing so many children who have been given another opportunity at life is simply indescribable.

Ella with her friend Ava 💗💗

We went back to the residence, did some laundry and had our last dinner at the hotel here.

I’m sure there will be some tears today as we say our goodbyes, but they will be happy and grateful tears. Soon we will be with Eric and Evan again and there will be more happy tears.


~ by Rebecca on April 27, 2023.

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