Monday, July 25, 2011

Finding the right path for Amelia (from Omi)

Currently we are all struggling to know the right path to take for any intervention to help Amelia to hear. There is still the possibility to have her be part of the clinical trials at the House Ear Clinic which would necessitate a cochlear implant first and then the wait for FDA approval for the brainstem implant. The other option is to take her to Italy where the leading expert on brainstem implants is located. Since early intervention is a crucial aspect of her recovery this is the path we are currently pursuing. Dr. Coletti has examined her medical information and agreed that she is a candidate for this operation, but naturally the cost is monumental. We would have to raise about $100,000 to pay for the surgery and a six week stay in Italy. Kristina has looked into setting up a non-profit account to raise funds for Amelia and is running into roadblocks everywhere. This seems to be a fairly straightforward process in other states, but apparently not in California. We need your prayers for guidance and direction in this endeavor. We want the very best for Amelia and that includes God's will for her. As always we thank you for being a part of this journey with us.


Saturday, July 9, 2011

Surgery update

Amelia had her surgery yesterday at ~230 pm. It has been quite a long time since her last sugery so we were worried about how difficult it would be to fast her all day. She couldn't have any solid food after midnight the night before so her 8:30 bottle was her "last meal". She had jello for breakfast and her last apple juice had to be finished by 11:00. She did surprising well :). We were able to distract her most of the day although it broke my heart to see her walking around the kitchen signing eat and I couldn't really explain to her why she couldn't have anything.

The first part of her surgery was with Dr. Kikkawa, her ophthalmologist. He and his team (he is an excellent surgeon and very well-known so he always has an entourage following him around) put a silicone tube in her left tear duct to help keep it clear. He also cut a small red piece of skin from her upper left eyelid that was left over from her earlier eyelid reconstruction. He was not able to go through her nostril to insert the tube since her nostril on that side is small and deformed so he ended up having to make ~ 1/4" incision on the bridge of her nose right next to the inner corner of her eye. It just needed a few sutures to close up the incision.

After the eye surgery Amelia was off to get a 3-D CT scan of her skull. Her neurosurgeon is checking to see if the holes in her skull are closing on their own. She has a small hole in the front of her skull (almost in the middle of her forehead). He is also checking to see if she is missing the bone between her nasal passage and her brain which helps protect her brain. I didn't even know we had a bone there and this is potentially very scarey and she will need to have a bone implant done if she is in fact missing it. For now I am chosing to believe that everything will be fine and the bones will grow on their own because I have enough to worry about at this time.

From there she was taken to a partial recovery room to have a heart ECHO done. This is a sonogram of her heart to see if the hole in her heart has changed at all. Her cardiologist thinks it is getting smaller just by listening to her heart but he wanted to take this opportunity to get a visual check. We should be hearing from him in about 1 week.

Finally, after 3 hours, they brought Amelia to recovery and we were allowed to see her. She was very confused and her eye looked worse than we expected but all in all she did great. Her nurse said she was a trooper and called Amelia "Stable Mabel" because her vital signs remained consistant the entire time. As usual, Amelia immediately tried to rip out her IV and was ready to eat. We are very fortunate that she does so well with anesthia because this is her 7th surgery (I think, honestly I have lost count).

While we were putting Amelia in the carseat to take her home we noticed that the tube was visible in her eye. It actually goes across the edge of her iris. We were not expecting that and thought the tube was coming out because she was blinking and crying and lots of blood was coming out. We ran back into the hospital and they had us page the ophthalmologist on call. We had a lot of trouble getting a hold of him because of bad cell phone reception. After about a 1/2 hour we decided to just go home. He called after we were on our way and said the tube is usually visible but only about 1 mm in your eye. After we got home and calmed down, I remembered that because of her malformed eyelids her tear duct on that side is much further towards the middle of her eye than usual so we think everything is ok. Hopefully it won't affect her vision in that eye since it is already her weaker eye and the tube needs to stay in for 3 months.
Today Amelia is almost back to normal. She is sleepier than usual and a little more "clingy" but we are always surprised at how quickly she recovers from such a big ordeal.

Friday, July 8, 2011

Birthday pictures

Kid's table
Hanging with Aunt Shelly
Surrounded by family and friends
Lots of little helpers
New drums
Amelia's favorite sign - dessert :)
Yummy cupcake

Amelia turns 2 (from Omi)

On Sunday we celebrated Amelia’s second birthday and she had a great time. There were more than twenty people at the party and she took it all in stride. She worked her way all around the crowd mooching appetizers and managed to eat a good part of her hamburger too. We all tried to sing “Happy Birthday” in sign language, but we’re not sure that she actually saw us, because she had her eye on the chocolate cupcake with a candle on it. She signed “dessert” and “chocolate” and then dug in. What a mess! Then it was time for presents and once she got the hang of opening them, she became quite good at it. She didn’t let all the other little ones (who wanted to help) intimidate her. She got some lovely gifts and everyone really made an effort to buy things she would enjoy and which would keep her challenged. Her favorite present was a doll that wears glasses. Amelia loves to play with glasses and always tries to put her own glasses on her toys. So now she has a pair of little glasses to play with. We really can’t believe that she is two years old already.

Considering all that she has been through and the constant frustration of scheduling her visits to doctors and therapists, it has been a long two years. But in other ways the time has flown by and our family and friends have loved watching Amelia grow and learn in spite of her challenges. She is a true miracle in the things she has achieved and she continues to amaze us with her love of learning and her eagerness to attempt new things. You’ll be surprised to hear that Amelia will be going to Palomar Community College later this summer. (I did tell you she was smart!) She’ll be going to their preschool program two mornings a week. We’re excited for her, but also a bit nervous.

Kristina is in the process of trying to schedule some surgery for Amelia on July 8th. Since the doctors usually try to group the surgeries to make good use of the sedation time, this was to include tubes in her ears (ENT), a CAT scan and unclogging her left tear duct (eye surgeon). As usual things are not going as planned. The pre-op appointment with ENT revealed that the tubes are not needed at this time. This is a very good thing, except it messes up the scheduling for the operating room, since the eye surgeon is not part of the Rady Children’s Hospital staff. For a while it looked as though the whole thing would be cancelled, but we seem to be back on track and now the cardiologist want to include an echo-cardiogram. Amelia’s heart murmur still has not gone away and although it is not giving her any problems the doctor wants to see exactly what’s going on in there.So, I am again asking for your prayers on behalf of Amelia. Even minor surgery is always risky and we need the Lord’s help and guidance throughout the whole process. And since Amelia is getting older and more aware of her surroundings she might not put up with everything as easily. Fasting before the anesthesia will not be fun.