Thursday, December 29, 2011

Monday, December 19, 2011

December update

Amid all the Christmas preparations the travel plans for the Italy trip are in full swing. “Uncle” Martin was able to purchase the airline tickets by using his considerable amount of frequent flyer miles and that is such a huge help. (Who knew that his constant work-related travel would turn out to be such a blessing for Amelia.) DJ and Kristina have located a small apartment to rent near the hospital in Verona and they have been gathering lots of helpful information from two other families who have already been through this experience. For example, it’s good to know that in an Italian hospital you are expected to do what you’re told and you don’t make requests. Amelia’s head will be shaved prior to the surgery and she will probably be transported by ambulance to another facility for observation right after the operation. She will be in the hospital for approximately three weeks and one parent can stay with her. They won’t be in the children’s ward, so they need to have lots of things to keep her busy. Another helpful hint was to bring shirts that will not have to be pulled over her head while the incision heals. We also learned that when the device is activated (three to four weeks after surgery), it is done in very small increments and under sedation. One of the children showed signs of being able to hear some sounds about a month after activation, the other took a bit longer. Since every child responds differently we have no idea what to expect. Adjustments of the device are called “mapping” and we hope that this can be done at the House Ear Institute in LA after they return home. This is the clinic that is working toward obtaining FDA approval of this surgery in the US, so the staff at HEI are very interested in following Amelia’s progress. One of the doctors has expressed an interest in traveling to Verona to observe her surgery.

In order not to let anything interfere with the Italy trip we are keeping an eye on Amelia’s overall health. She seems to get colds quite frequently and is congested much of the time, which is probably due to all the Kindergarten germs Siena brings home to share with the rest of us. At her last ENT checkup Amelia showed an ear infection and had fluid in both ears, so Kristina and DJ are leaving room in the schedule for possible tube surgery before they leave at the end of January.

Our fundraising efforts are continuing and we are reaching the halfway point. Our family continues to be overwhelmed by the generosity of our friends and family in these tough economic times. Even perfect strangers who hear of Amelia and are touched by her story are sending donations.

“Amazing Amelia” is just taking all this activity in stride and she seems to be enjoying the Christmas season. She is surprisingly careful with all the decorations and is adding lots of holiday signs to her language repertoire. It did not take her long to learn “pie” at Thanksgiving and she very quickly learned “Christmas tree, Santa, presents, angles, stars, snowman and hot chocolate“. She mimics absolutely everything, even when we scratch our heads or cross our legs! Recently she has started to show an interest in letters and numbers and she can now recognize A-F and 1-4. She sees Siena doing her homework (yes, really, lots of homework in Kindergarten!) and wants to participate. Reading books with her is a constant challenge since she wants to sit on our laps, touch the book, turn the pages and observe the signing at the same time. One or two more hands would be so helpful!

Sunday, December 11, 2011

Fall pictures

I realize these pictures are out of season but they are too cute not to share. After all, this was Amelia's first pony ride :) I will try to catch up with more pictures before Christmas....

Wednesday, November 9, 2011

Exciting announcement

I'm sorry it has been awhile since my last post. It seems like things have been non-stop since we have made the decision to go for the ABI in Italy! The fundraiser at Tango went very well......good food, good people and lots of fun. I promise to post some pictures soon. I have been having trouble uploading video to this blog but I'll keep trying.

OK....big announcement......we have a date for Amelia's ABI in Italy! We need to be there by Feb 2nd for testing and then if all goes well, her ABI will be implanted on Feb 7th. That sounds like a long time away but it is coming up quick and we have a lot of planning to do. We found a small apartment within walking distance to the hospital for a good price and are working on plane tickets now. Luckily, my brother Martin has offered his airline miles to us (and he has a ton from traveling with work) and that should cover most of it (thanks Martin!!). We have a few other offers from friends to help cover the rest if we need it. That will be a huge help since plane tickets are expensive.

Wednesday, October 26, 2011

It’s been such a long time since I wrote in my journal, I hardly know where to start.
As a two-year-old Amelia is showing off her little personality in all that she does. Usually she is very good-natured, but the “terrible twos” do shine through on occasion. She knows exactly what she is allowed to do and what is a no-no. Sometimes it just seems to be worth it to pull all the towels off the bars and throw them on the floor! I’ve seen her smack her own hand after she pulls all the CDs of the rack! Most of the time though, she is easily entertained and co-operates with all our instructions. Her sign language skills improve everyday and she keeps us on our toes. Whenever we introduce a new sign, she tries it immediately and knows how to pose her little fingers in ways I never thought such a young child could. She now responds to little sentences, like “what is Siena doing?’ or “tell Opa bye-bye”. She puts a few signs together herself, such as “get more books” and “dirty, throw away”. A few weeks ago she invented a sign for broccoli. (The word is usually finger-spelled, which has no meaning for her yet.) She calls it “little trees”. Makes sense, doesn’t it?
Amelia’s small motor skills are terrific and she is a whiz at puzzles, matching games, play dough and stringing beads. Since she does not put things into her mouth like other toddlers, she is allowed to play with toys containing small pieces and she loves those, especially if they belong to big sister Siena.
Gross motor skills are another matter. Amelia is walking much better, but is still somewhat unsteady when she is outside or in unfamiliar places. Her depth perception is not very good and she is uncomfortable when the color of the pavement changes or there are cracks in the sidewalk. Her physical therapy includes climbing stairs to strengthen her leg muscles and to help her coordination. We have to watch her carefully since she would just launch herself off the steps if we did not stop her. She also has to walk on a low beam to narrow her wide stance and increase her sense of balance. An obstacle course of small stools and boxes is also good for her. She is beginning to pedal her own tricycle and attempts to ride a little scooter. Outside she still wants to hold onto something or someone most of the time and she does not like bright sunlight as it really bothers her sensitive eyes. Amelia’s glasses transition to sunglasses, but they are still not dark enough for her. She loves cloudy days which is not the norm in southern California.
A few months ago Amelia’s hair finally started to grow in. It’s very fair and wispy and has defied all our efforts to make it lay down. It has been a source of amusement to all who see her since it stands straight up in the air and looks like a fuzzy halo. Nobody can resist touching it! Just this week it’s beginning to settle down a little.

Since Kristina and DJ made the difficult decision to go forward with plans to take Amelia to Italy for a brainstem implant we have been overwhelmed with the response from our family, friends and even from perfect strangers. The fund is growing steadily and we are so thankful for each one who has been able to contribute.
First the blog went public, then a Facebook account was established and we sent out letters appealing for help to nearly everyone we know. In early October a wonderful group of Kristina’s co-workers hosted a fundraiser in a local park which was so much fun. There was great food, a raffle of items donated by local businesses, a silent auction of beautiful paintings, crafts and other items, a jumpy for the kids and even an appearance by Batman and Catwoman in the bat mobile. The event raised almost $8000.
Next weekend the Tango Restaurant in Escondido is hosting another fundraiser for Amelia. The owners are friends of DJ’s and they are planning a special luncheon with raffles, silent auctions, entertainment and fun for the kids.
In November another friend of Kristina’s is running a marathon to raise money for Amelia. She will be running from Coronado to Imperial Beach pushing her 1-year-old twin boys in her jogging stroller. That should attract some attention!
Meanwhile some articles have appeared in the local papers to appeal for help and Amelia has become a recipient of the Mitchell Thorp Foundation which will sponsor a huge Walk-a-Thon in January. The MTF is a local non-profit organization which helps critically ill children with medical expenses. We have begun attending their planning meetings and are so impressed with the wonderful people who work so hard to bring hope and help to others.
Kristina had an email from the clinic in Italy offering a November date for Amelia’s surgery, but since at least a third of the funds have to be in hand to schedule the operation this was not possible. Since then we have received a large donation from some very dear friends and are now hoping to be able to schedule the trip in February. Keep praying that the Lord will continue to bless this effort and provide all that is needed.

Saturday, October 8, 2011

Fundraiser at Kit Carson Park - Oct 1st

Our first fundraiser was so much fun. My friends did an amazing job getting everything organized for the event - from walking store to store to get items for the raffle, to figuring out the food and drinks and then cooking, decorating, selling tickets, making sure everyone had a good time, and cleaning up afterwards. Whew, they did it all! One of my friends even designed a shirt for the event with the help of her son. The shirts turned out so good that we are looking into having some made professionally so they may be available soon.

Amelia had a great time meeting everyone (including Ivy, an african-senegal parrot) and enjoyed her first experience in a bounce house. We had lots of great items in the raffle and silent auction. There were beautiful pieces of artwork including paintings, photographs, jewelry, birdhouses, and a hand painted child's rocking chair to name a few. Thanks to everyone who really meant a lot to us!

I know I've said it before but it was awesome to see so many people from different areas of our lives come together to support Amelia. Family, friends old and new, coworkers, neighbors, friends of friends, .......... everyone was there. It's hard to explain how good it felt to be surrounded by so many people who care about us. It reaffirms our decision to go for the ABI and I know we will be able to get there with all of your help. The moral support has been overwhelming.

Here are some pictures of the event. I was too busy to take any so thank you to Kristin and my dad for remembering to take some pictures for me.

Sunday, September 18, 2011

can't find the words

I am at a loss for words right now.........

I am so overwhelmed by everyone's kindness and generosity. I just hope that one day I will be able to use the knowledge that we are gaining on our journey to help others in need.

Thank you for all of your continued love and support. We couldn't do it without you!!

Friday, September 16, 2011

Fundraiser Oct 1st

We are having our first fundraiser for Amelia on Oct 1st at Kit Carson Park in Escondido (El Arroyo #2 picnic area). We are going to have food and drinks, a bounce house, raffles with lots of gift certificates from local restaurants, and a silent auction featuring work from local artists (prints, photography, jewelry...). Please come join the fun! We hope to see lots of you there :)

example of some of the artwork

Monday, August 29, 2011

the dreaded eye patch

Amelia is supposed to be wearing an eye patch over her right eye for at least one hour a day to strengthen her left eye because it is weaker.  She is very near sighted but appears to have good vision in her right eye with glasses.  Her left eye has a lot more problems largely because most of that lid was missing when she was born.  She has some jittering in that eye and she developed a corneal ulcer when she was about 3 months old.  The ulcer healed fairly quickly but has left small indentation on her eye.  Because of this she has some depth perception issues.  Whenever she needs to walk over different types of floor (ie carpet to tile or tile to wood) or even has to cross a crack in the concrete, she puts her hands down first to see if it is uneven.  She is definitely learning to compensate for this problem and has no problem navigating around places she is familiar with.    The fact that she is missing the balance nerves in both ears makes walking even more difficult but she is improving daily.  As I said before, she is a very determined little girl and is not letting anything slow her down :-).

Now, back to the eye patch......  As you can imagine, she is not a big fan of the eye patch.  We have to entertain her the entire time she is wearing it just to get her to keep it on.  She is actually getting better with it on so I am hoping that means that her vision in her left eye is getting better :-). 

Siena joining in the fun
Mama too
On the coffee table? Whatever works!
Now we're just getting silly :)
Horse's turn next

Tuesday, August 23, 2011

We made a decision...finally!

After much agonizing, tons of research, countless doctor consultations, hearing evaluations, prayers, hearing aids, plus a few MRIs and CT scans, we have finally decided to go forward with taking Amelia to Italy to receive an Auditory Brainstem Implant (ABI). This was not an easy decision but we feel it is the right thing to do for Amelia. I think I have been leaning in this direction the whole time but everything seemed so unreal. I sometimes still think it is unreal to have a daughter born with so many difficulties. Our family has led a relatively normal life with many of the usual ups and downs but nothing as serious as what Amelia has been through and will go through. Yet she has been such a blessing to our family and has opened so many new doors for us to explore as well as introduced us to so many amazing people. Amelia is truly unaffected by all of her obstacles and gets so much joy out of life. She is also incredibly strong and determined. I have learned so much from her already and she has made me a much stronger mom for both her and Siena. It also seemed so unreal to imagine that I would be taking my daughter to Italy for a medical procedure that she is not able to get in the US. I do believe it will eventually be approved by the FDA but we don't have the time to wait. The earlier she gets the implant, the greater her success will be at comprehending sound. What is real is our love for Amelia and our willingness to do whatever it takes to provide her every opportunity available in life.

We cannot do this without everyone's help. As my mom stated in a previous post, we will need to raise about $100,000 to cover the cost of the procedure as well as travel expenses. We will need to be in Italy for about 6 weeks because the implant cannot be activated until a few weeks after it is put in place and she will require close monitoring after that. Because the implant is not FDA approved, our insurance will not be helping us at all. We would like to be able to schedule the ABI within the next 6 months.

There is a special fund set up for Amelia which is open to receive donations. We would appreciate any amount that you can give toward the cost of Amelia's surgery. We realize that this is a lot of money to be raised, and that each one of you has your own needs within your family. Please give whatever amount you feel comfortable contributing. No amount is too small, or too big, and you are not obligated or expected to give, but we are asking you to donate if you can.

Donations can be made to the following:

Mission Federal Credit Union
C/O Amelia Heston Benefit Account
PO BOX 919023
San Diego, CA 92191-9023

Donations can be made in person or by check through the mail. I've also set up a paypal button on this blog. There is no additional fee for you to use paypal however they will charge us a small percentage of each donation.

Thank you everyone for all of your love and support.  Please continue to keep Amelia and our family in your thoughts and prayers.

Thursday, August 18, 2011

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.


Sunday, June 26, 2011

Happy Birthday Amelia!

Today is Amelia's 2nd birthday! We are looking forward to celebrating with family and a few friends. She may not understand birthdays yet but she is definitely enjoying the festive atmosphere. DJ, Siena and I greeted her this morning with balloons in her crib and all of us signing Happy Birthday and she was very excited :)

Thank you everyone for all of your love and support!

Sunday, June 5, 2011

Thursday, May 26, 2011

Her Favorite Toy - a horse from Del Mar

Amelia's favorite toy is a stuffed animal horse that Siena got from the Del Mar racetrack before Amelia was born. Siena had no problem letting Amelia take over the horse and Amelia has loved it ever since. The horse has long arms and legs that Amelia likes to put around her head and neck as well as chairs, bed frames or anything else where it can hang down. Her favorite thing to do right now is to put her glasses on the horse or have the horse sit and slide while she makes the appropriate signs.

She lost her horse a few months ago and we could not find it anywhere! Grandma contacted the racetrack and managed to get in touch with someone who was able to find a new horse and promptly mailed it to Amelia. Yea Grandma :)! In the meantime, we found her old horse so now we have a back up in case it ever gets lost again (or falls apart......whichever happens first).