Barcelona via Tour Bus

 A fellow Chiari friend suggested taking in the sights of Barcelona from atop a Double Decker tour bus. Being a hop on, hop off bus with many sightseeing stops we opted to stay on the entire time for Mandy's sake- only getting off halfway through the tour to eat lunch. It was a little cold and stormy the second half of the tour but we so enjoyed all of the picturesque sights from the top story of the bus  ♡

Our favorite sights were Montjuïc Mountain where many of the 1992 Olympic events were held, La Sagrada Familia, Antoni Gaudí's renowned unfinished basillica, (which was started in the 1880s) and Port Vell where we got our first glimpse of the Mediterranean Sea. The Nuria Restaurant in the Catalunya Plaza was absolutely incredible as well.

The Catalunya Square was magnificent

Arc de Triomf

Heading up Mt Montjuic

This mild climate offers ideal growing conditions for these non native varieties of  cactcti sent as gifts to Barcelona from all over the world 

Olympic Stadium 

The disk in front atop the pillar is where the Olympic torch was lit in 1992 Olympic opening ceremony by a lone archer with a fire arrow

Lunch Stop

Nuria Restaurant, estblished in the late 20's. Such a lovely place, would highly recommend!

Ash and I had a local dish, the paella chicken and Mandy & Grant had pepperoni pizza ♡ Both were to die for delicious!

Cafe con leche

We checked with Mandy to see if she wanted to continue with the tour.. and although she was a little sore, the short walk from the bus & having a bite to eat had given her a break from the sightseeing so she insisted she wanted to finish it out! We figured once she had enough we could disembark and grab a taxi back to the hotel any time.. but she ended up wanting to see the entire tour! ♡

Back on the bus!

We had brought a seat cushion as well as a small back pillow for her which made all the difference! 

 La Sagrada Familia! 

We hope to return later in the week

After a very long day for Ms Mandy we grabbed a taxi and headed back to the hotel ♡ (she went on to lift 1 lb weights and walk at the gym later that evening! She's determined to get stronger!

Why not Decompression Brain Surgery?

 We've had some people ask why Mandy didn't just get the decompression brain surgery as originally prescribed back in 2019.. initially her surgery was cancelled due to Covid.. then as she did more research she wasnt so sure she wanted to risk the potential side affects of such an invasive procedure.. with her being an adult and having a pretty severe case of it there were no guarantees that the surgery would even be successful. Many  Chiari patients with such a severe herniation go on to have additional decompression surgeries. Her neurosurgeon gave her the option of trying to live with the symptoms or seeking to reschedule the procedure. She chose to try and live with it and trust the Lord for guidance, healing or just the strength to live with the condition.

 Fast forward to 2022 and further testing we found out it's been a spinal issue all along, pulling her brain stem down into her spinal column causing the Chiari Malformation. .. Her filum cord was too tight & thick- essentially the size of a 3 year olds, presenting similarly to a tethered cord, pulling down on her spine and brain, not allowing for natural growth and progression. Her spine barely has any curvature because of the restriction and of course it's caused many other symptoms and issues throughout the years. By severing the filum cord with this surgery it has released the pressure and may allow her brain stem to recede (to what extent we do not know yet..) as well as allow her to go on to develop and physically improve. She will need physical & occupational therapy to build up her previously constricted muscles that have have been under used.. it may take a while to regain her strength but honestly she has a very good chance of living with minimal symptoms from the filum disease.. At this time the Institut Chiari & Siringomielia & Escoliosis de Barcelona is the only specilaized neurosurgical center who offers this fairly non invasive procedure. The brain surgery may have relieved some pressure temporarily but this procedure has corrected the cause of why she had the brain condition to begin with. We are so grateful for a fellow Chiari survivor who introduced Mandy to the medical research about the filum surgery & for introducing her to the surgeons in Barcelona who were able to review her numerous MRIs and determine that she would be a perfect candidate for the procedure. More information can be found Here

Thank you so much for your prayers & support!

 Love you all ♡

Slow & Steady ♡

 We've been laying low while Mandy recuperates from her surgery. Every day she gains strength and a little more mobility. We've been warned that there will be set backs and progress.. over the next year or two. Already she has enjoyed less pressure at the base of her neck, much more feeling and flexibility in her feet and legs as well as experiencing more stability while standing. I'm so grateful that Grant & Ash are here because we can take turns going out in pairs for groceries as well as essential trips to the laundrymat & pharmacy.. while the 4th person is able to stay at the hotel with Mandy. Today though she was able to join us in about a 10 block stroll along the quaint quarter in which our hotel is located. It's not a tourist area.. which makes for such a lovely and authentic Spanish experience. In the 10 days we've been here we haven't met one American! 

Gorgeous Barcelona sunrise

Our home away from home ♡

Grant & I set out to find a laundrymat!

Finally found it, thanks to Google maps! :-)

This Cafe had the best Cafe con Leche! 

Next stop, flowers for Mandy

We left the flower arranging to Ash

So pretty!

The next day Mandy & Ash joined us for a walk around the neighborhood! We scouted out a fun stationary store and pet store we hope to visit on Monday!

Surgery Day!

Ash & Grant escorted us up to the clinic again on surgery day. Her interpreter then pushed her across the street to the hospital where they set her up with a room and got her checked in. I stayed in the room until I was called down to speak with the Dr after surgery. It was a success. They severed her filum which had been pulling on her spinal cord, causing the chiari as well as her straightened spine, numbness in her extremities, neurological effects and loss of mobility. At this time we do not know to what extent her body will recover but having the tension released will at the least stop the progression of the filum disease. Already she is having a very small decrease in head pressure, is walking much more straight as well as having increased sensation in her legs and feet. She will need physical therapy to build her muscles back up. Recovery to whatever capacity her body will enjoy may take months, maybe longer to realize but already she is so grateful for what progress we've already seen! Thank you all for your continued prayers and support! 

Mandy & I with our sweet escorts

Mandy's interpreter Anoop is a funny guy! Has really made her feel comfortable

Mandy's room

From her hospital window we had a view of the park. These ladies were enjoying an exercise class

After about an hour and a half I was called down to this waiting room. I was able to speak with the Dr after a while but wasn't able to see her until about 2 hours later 

Her sweet friend Emily who has been to the Barcelona Chiari clinic and has the same surgery sent her flowers ❤️ 

Once she got back to the room and had a consult with the Dr we texted Grant & Ash that she would love visitors

They've been encouraging her to walk around as much as possible.. she's had some pain & pain med issues but were getting them worked out ❤️ 

Finally released to head back to the hotel! Thank you for your prayers! 

Pre-op testing & appointments

 It was a super long day but she's doing very well! We met with the Dr who will be performing the surgery.. who carried out neuro & muscle testing, took her family history, reviewed the numerous MRIs all while communicating through a very kind translator who transported her back and forth to and between the clinic & hospital where they did a blood draw, pcr and ekg test with the anesthesiologist, & filled out admission papers for her surgery and stay. Her team is hoping for a huge improvement! 🙏🏻 

 Grant & Ash escorted us in the early morning thankfully its only 2 blocks away

At the clinic ❤️ 

We report to the clinic at 11 am tomorrow morning. at which time our interpreter Anoop will wheel her over across to the hospital for surgery. Surgery will last about 45 minutes. She and I will stay 24 hours after which she can return to finish her recovery at the hotel. ❤️ We would appreciate your prayers!