ah, allora.........

On Friday DJ and I tried to find a toy store in a different area of town. DJ did a great job navigating the bus system and getting us to the address listed online but unfortunately the address must have been wrong because there was no toy store to be found. We walked around the middle of nowhere for awhile but eventually gave up and took the bus back to our apartment. Ah, allora.... We went to the little tobacco shop just below our apartment and bought a deck of cards for ~$10 which seemed kind of expensive but Amelia has been enjoying them so it was money well spent. To be honest, her favorite "toys" are still her burp cloth and our belts :).

A cool thing happened on the bus though. A young girl (~15?) noticed Amelia and I signing and started to ask us about it in Italian. It turns out that she is also deaf. She showed us her hearing aid in one of her ears and explained that her mom was also deaf and they used sign language in their home. She was fluent in Italian, English and Sign....impressive :). We only had a chance to talk for a few minutes before she got off of the bus. We told her we were here from CA for a special surgery to help Amelia to hear. She thought that was very cool and we were all happy to make a new connection :).

Last night we set off for another adventure. This time we were trying to find the Birreria (beer hall) that DJ found online. It was only a short walk from our apartment but we had to find streets with sidewalks. We tried to cut through the hospital but it didn't work (unless we wanted to scale an 10' stone wall). DJ was determined though and we did eventually make our way there - without having to climb any walls :)

Everyone got what they were looking for:

It was a fun place and I'm sure we will be back there again before we leave :).

Enjoying our time our time out of the hospital

Late afternoon last Friday Amelia was released from the hospital....yea! We have to go back daily for her antibiotic injection. On Monday they changed her bandage again and her surgery site is healing well. That is the first time DJ saw the sutures and he thought it was gruesome. The wound is actually 6-8" long and runs from above her ear down to her neck. She tries to itch at the bandage sometimes but usually leaves it alone (besides smearing pasta sauce and chocolate all over it :) )

We are enjoying being together in our apartment and are thankful to have a kitchen to cook our own meals in. Last night we were a little homesick so we made cheeseburgers but usually it's pasta and pizza...yummy!

On Saturday we finally made it to the city center. It is very beautiful with lots of Roman ruins all around. It was very crowded....much different than the area we are staying in. We are going again this afternoon for a picnic lunch and to take a closer look at some of the sites. It is supposed to be sunny the rest of the week and may even warm up to 60 by the end of the week.

We received some great news the other day. House Ear Institute in LA was able to get approval from the FDA to work with Amelia's ABI. They had to apply for compassionate use of the MedEl device since it isn't approved at all in the US. This means we will be able to get all of her mapping (sound adjustments) done in LA instead of having to fly back here. A representative from MedEl Europe will fly to LA to get everything set up. What a relief! We appreciate all of the hard work everyone has put in to make this happen :).

still in hospital - day 14

For those of you not on facebook, Alicja's surgery went very well and she is out of the ICU now. Dr Colletti was very pleased at the intial testing of her ABI - yea!




-Amelia-

One of my best friends from college, Patti, came for a visit :). She is living in London now and we haven't seen each other for about 7 years so it was great to see her. This is her first trip to Italy and almost all she got to see was the inside of the hospital - what a great friend! We did actually get to go out to lunch a couple times (thanks DJ!). Patti and Amelia became friends right away and she helped all of us break up the monotony of our hospital stay.

Monday the 13th was a tough day. Amelia still had to have an IV for fluids and antibiotics and it kept coming out. Between the IV and daily bloodwork, her poor little arms are black and blue. DJ noticed on Mon morning that Amelia's hand was very swollen and her fingers were turning purple. The IV in her wrist had come out of the vein overnight and was filling her hand with fluids. Her fingers were constricted with tape....poor thing. We had to go up to the 5th floor (pediatrics) to get a new IV put in (the 5th one) and this was after she already had blood taken earlier. We were all very upset. DJ and the nurses were trying to comfort me almost as much as Amelia since we both were crying (guess I can't be strong mom all of the time).

Patti and I went out to lunch and while we were gone, the IV slipped again. DJ had enough and told the nurses no more IVs, we were done! What a good dadda :) So now Amelia is IV free and can roam around without a large pole always rolling around after her (it was making her nervous). She is also sleeping much better which means I am too.

We were supposed to get out of the hospital on Thurs afternoon. We were all packed up and ready to go when the word came from Dr Colletti that none of the families could leave until Friday morning.........we shall see what happens tomorrow.

Today Amelia had a bandage change without sedation so I was able to get a quick look at her surgery site. It was a very quick look since I had to hold her still while the doctors and nurses changed her bandage. There is ~3" long cut behind her ear and she has lots of stitches. The area looks really good and seems to be healing nicely. The bandage will stay on for 5 more days and then I'm not sure if it will come off or be replaced.

The past couple days have been beautiful and sunny. I can't wait to get Amelia outside for a little fresh air and sunshine. There is a nice park across the street from our apartment and I am hoping we will be able to take Amelia there to play on the swings sometime next week :)

Alicja

Surgery day was incredibly emotional not just because of our worry for Amelia but also because of another family we have befriended here. Their daughter (just a few months older than Amelia) was supposed to recieve her ABI on the same day as Amelia. Her name is Alicja and she has CHARGE syndrome. Alicja was taken to the surgery room first and Amelia followed about 1 hour later. Unfortunately Alicja started having bronchial spasms when they tried to turn her to the correct position. The anesthesiologist came out and told her parents the news and said they may try one more time if the spasms stopped. Alicja ended up not being able to get her ABI but I am happy to say that she came out of anesthesia just fine and has recovered well.

Her parents were devastated that she was not able to get her implant. They have been raising money just like us and have been planning on this for a long time. They are awesome parents and are doing everything they can for Alicja. They will stop at nothing to give her the best life possible. Alicja also has a very supportive and loving extended family. Her grandmother has just arrived from Poland to be here with all of them.

The doctors are going to try again to implant Alicja's ABI this coming Tues morning. Please keep Alicja and her family in your thoughts and prayers for a successful surgery.

For more information about Alicja please visit

www.alicja.org

On Facebook - Alicja CHARGE

Amelia has an ABI!!

Feb 7th - Surgery Day

We were woken up at 5:45 to be at the surgery waiting area by 6 am. Then we had to wait until 8 before they brought Amelia back for surgery. That gave us a good long time to stress out and most of you know how much DJ enjoys waiting. Dr Wilkinson (from House Ear, LA) was able to be in the operating room during Amelia's implant to observe Dr Colletti first-hand. It was nice to see someone that we recognized and comforting to know he would be in the room with her. After a few hours (I honestly lost track of time for the entire day), he came out and told us that the implant went very well. Once the ABI is put in place, the doctors activate it just to make sure that it is contacting the correct spot in the brainstem. They were all very pleased with the response on the computer so that is a great sign. The device is then shut down for at least 30 days until official activation so the swelling goes down and the area heals. It was a couple more hours before they finished "closing her up" (shudder) and then brought her upstairs to the ICU.

I was able to be with her in the ICU but they could not wake her up until after she had a CT scan 4-5 hours later to make sure there was no internal bleeding. Her CT scan was done at 7 pm and looked good so they were able to slowly wake her and take out her tube (she was intubated the entire day). She was still very groggy because she was on strong pain meds. She woke up at 11 pm, looked at me, signed "hurt" and then went back to sleep. Heartbreaking but also a great sign that her brain was ok :). I stayed with her and held her all night. The doctors and nurses in the ICU were incredibly kind and helpful and took good care of us.

The next day Amelia was able to return to her room in the late morning. She slept most of the day and remained on pain meds. That day and night were very difficult. Her face was swollen and she just kept moaning softly. The only good thing about her face being swollen is that it helped keep her left eye closed so it did not dry out as much as usual.

By the following afternoon, Amelia was looking and feeling much better. She is now off pain meds and wanting to play. She is still hooked up to an IV for fluids and antibiotics so she is not able to move around much so DJ and I are very busy trying to keep her entertained. Thank goodness for our iphone and ipad! The nurses on our floor are awesome. They are doing their best to communicate with us. One nurse who speak English very well even translated the daily menu items for us even though it was kinda fun picking stuff out and seeing what we ended up with. Most of the food is good and you know you can't go wrong with the pasta :).

Update from Verona

We made it to Verona safe and sound. It took a long time to get here (3 planes, 2 buses, 1 train and a taxi) but everything went smoothly and Amelia did amazing of course.

Our apartment is very nice and we made ourselves at home right away. The weather here is very cold (~30 F during day, 15 F at night) and it has snowed 2 times already (not normal for the area apparently). We bundled Amelia up in the stroller and checked out the town. We are on the outskirts of Verona within walking distance to the hospital. We found the market and were able to get 2 Italian cell phones (with a sales person who didn't speak any English - thanks DJ). Did I mention that our apartment is on top of a ristorante/pizzeria? (again, thank you DJ) We haven't been able to try it yet but I'm sure we will get a chance after Amelia is out of the hospital.

We checked Amelia in to the hospital on Thurs morning. Now that was an adventure! Definitely different than what we are used to. There was no main check-in desk at the hospital (at least we couldn't find one) and we didn't know where to go so we had to ask around for Dr Colletti. We made it to the correct floor and were told to sit at the table down the hallway and wait for Dr Carner (head of ABI team) to arrive. We were there for at least an hour, surrounded by people chattering in Italian with bandages on various parts of their heads, thinking "what are we doing here?". None of the staff had even asked for our names yet. We kept reminding ourselves of the other families we met who have already been through this experience and that helped give us a little courage. We finally were admitted to a room and settled in.

There are 3 other families with children who will also be getting ABIs on Mon and Tues. They are from Canada, Singapore, and Ireland (originally Poland). They all speak English which is great because most of the hospital staff does not so we are all trying to figure this out together.

Only one of us is allowed to stay overnight at the hospital. DJ usually goes back to the apartment in the evening to do homework while I stay the night in the hospital with Amelia. He comes back the next morning and I go back to the apartment for a few hours in the afternoon to take a little break and catch up on emails. We haven't been able to get wi-fi access in the hospital yet...no one seems to want to share the login/password. Tonight DJ is going to try to find the superbowl on the TV or internet.

Amelia is doing well in the hospital. We brought lots of toys to keep her busy and take a daily walk to the cafe downstairs for chocolate milk for her and a cappuccino for me. The worst part about the hospital stay is the huge shot of antibiotics she has to get in her little butt every night. It breaks my heart everytime but I know it is very important that she does not get any type of infection.

I have lots more to say but I am running out of time so that will be it for now. Amelia's surgery is still scheduled for Tues but I don't know a time yet.