Before it’s an after thought amidst the upcoming schedule for Keira’s treatment and Olivia going to Amsterdam weekly for her treatment, I need to look back on the past week.
As far as time at the hospital for Keira goes, it was truly minimal in comparison to the first week. She had an abdomen ultrasound and x-ray (which came back normal, as have the rest of her tests), we took her with us for our training in the isolation room (where we will be for at least 40 days once they administer the gene therapy) and that was about it.
For Olivia, she had two appointments with the physiotherapist here (equivalent to physical therapist in the US) and then our third visit ended up being an additional visit with the pediatrician’s team regarding her thumb (her go-to for self-soothing) which needed some antibiotic cream and some concern regarding her ongoing pain, for which we’re scheduling an abdominal ultrasound next week.
Many MLD kiddos have issues with their gallbladder that then requires its removal (and we hear afterwards it makes a big difference) so we will see what the results say. We are hoping another surgery is not so near in her future since everytime she is administered anesthesia her disease progresses. But if it lessens her daily pain, it will be a necessity.
Thankfully, we still get regular smiles and keep her as comfortable as we can. Being like Eva always makes her happy. 👇🏻
For big sis Eva, she is always rolling with the punches and learning to be a better big sister each day. Her Kindergarten class meets at 8:15am, which is 5:15pm our time. Given that this is nearing the time we get dinner going and the time all of our family, friends, clients and doctors in the US are available to chat, it has been hard to keep her as involved with her hometown school as we would have liked.
Now that we have a timeline for upcoming months in regards to both Olivia and Keira’s treatments we are hoping to figure out a routine for her. Even if schools reopen here in September, doctors are recommending she stay virtual for the safety of Keira and Olivia. If anything, I am determined she will learn Italian! 😊🇮🇹 In the meantime, she is enjoying her bike rides around the lake (thank you, Laura and Silvio) and making wishes in the fountain.
While it is often hard to see the silver linings, we always have hope, love, family and faith to move us forward. We know this will all be well worth it to provide our dear Keira a chance at a normal life.
P.s. we have also really enjoyed our recent rainy days (which we rarely see in Arizona).