tag:blogger.com,1999:blog-2940236979822975962024-03-13T12:53:43.077-07:00 amazing ameliakristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-294023697982297596.post-952958360008311982014-05-07T08:44:00.001-07:002014-05-07T08:44:49.871-07:00Our big girlMay, 2014<br />It’s been such a long time since I wrote a journal entry I hardly know where to start. <br />Amelia’s recovery from her surgery last September was long and tedious and not at all like her usual style of “bounce back and keep on going“. Since the stints had to be removed from her nose to stop the bleeding there is not much of a change to the shape of her nose, but her lower eyelid is not as droopy and her lip healed well. The real problem post surgery was that her hearing was really affected. Nobody seemed to be able to tell us why that should be, perhaps there was some swelling in her brain stem? <br />
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<br />We were so glad to be able to communicate with her in sign language during that period of time and eventually her hearing returned and she regained the progress she had lost. She also had a number of colds and little illnesses that kept her out of school quite often, but she enjoys her preschool class in the DHH (Deaf and Hard of Hearing) program and is making good progress. She gets picked up by a small school bus at 7:20 am and returns home at about 11:45am. Two long bus rides for a relatively short school day, but Amelia takes is in stride even when the bus breaks down and the driver does not know sign language! She is the only child on this bus route and often there are scheduling mishaps and she is kept waiting. In October she received a special award for being the class “Vocabulary Superstar” for her sign language skills. We are not sure if she really understood what it was, but she stood proudly on stage and posed for the camera. And of course a party in the classroom is always a treat for any reason.<br />
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<br />In December Amelia started Horseback Riding Therapy and does she love it! She is very tired of all her other therapies and would rather not go, but on Wednesdays she is raring to go and can hardly wait. She rides at a very special place called “Reins” out in farm country and I feel so privileged to take her there every week and be able to observe the work that the dedicated staff do with so many special needs children and horses. When we turn into the road leading to the farm, it’s like entering another world. Large pastures with white fences and horses everywhere, big trees, lovely trails, stables, and outbuildings to house the offices and all the equipment they need. Amelia quickly learned the routine and knows where to find her helmet and visor and to make sure her horse is waiting in it’s stall. She rides a fat little Icelandic pony named Kvika, the cutest little horse ever. There are special ramps for the children to mount their horses and then a team of tree people stay with them while they ride either on the trails or in the arena. They work on her balance by letting her lean from the horse to place and retrieve objects or by letting her ride backwards and side saddle. She is also learning to control the reins to tell Kvika to “Go” or “Whoa”. Her favorite part is when they allow her to trott for short distances. Amelia also loves it when she dismounts and gets to find a bucket and some carrots to say thank you to her horse. Hanging up her tackle is also very exciting for her. <br />
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<br />We can see some improvement in Amelia’s balance and she is now willing to ride a little scooter with three small wheels. She still likes her tricycle better and whizzes around on it confidently. Her dad got a co-pilot attachment for his bike which allows Amelia to ride a child’s bike right behind him. She really loves that and said she was done with the trailer she usually has to sit in on family bike rides. It’s so important to her to always feel like a “big girl” and do as many things as she can independently. She wants to buckle her own seat belt in the car (and the school bus!), dress herself, unlock and open all doors, carry everyone’s backpacks, purses and keys, make the beds, and carry dishes to the sink. She’s really fast and we constantly have to be on the look-out for potential mishaps in her efforts to beat us to the next task. <br />
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<br /><br />We can practically see her busy little brain at work in trying to figure out the world around her and she amazes us with her reasoning and inventiveness. She notices everything and comments on it. It takes us forever to go for a walk, because she wants to talk about things all the time. And since she can’t walk and sign at the same time, we have to make lots of stops. We recently had a big discussion about bees. She really did not believe what I told her about bees making honey and so we spent a few hours at the home of some friends who keep bees and they graciously allowed her to observe the whole process. She also got to pick juicy oranges off a tree that day which was another lesson learned. <br /><br />A by-product of making Amelia independent is that she really wants to make her own decisions! She will decide what to wear, what to eat, what to play, where to walk and which book to read. If we suggest she wear the red shirt, she will most certainly choose the yellow one and it’s a battle to get her to wear shoes when she really wants to wear her flip-flops! Everything has to be negotiated: pigtails vs. ponytail, sunhat vs. baseball cap, jacket vs. sweater and on and on. If you give in too easily she changes her mind, just to keep things interesting! Very occasionally she arranges for a compromise as in the case of her latest lunch craze. She has been wanting to eat a “dippy egg” for lunch every day for weeks and one day I decided that we were having a sandwich instead. We did a couple of rounds with me signing sandwich and Amelia signing egg. Her signs were getting bigger and more emphatic when she finally stopped and looked at me slyly. She then signed “egg sandwich”. And that’s what we had for lunch, of course.<br />
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<br /><br />After reading all this I’m sure you are wondering how Amelia’s hearing is progressing and the operative word is “slowly”. Kristina and DJ recently had the opportunity to get together with two of the other families whose children were implanted at the same time in Italy. One of the dads commented that he expected their progress to be slow, but not at the “speed of a glacier”! So we are not alone. Amelia continues to get speech therapy every week and she is identifying more and more words. It’s thrilling when she suddenly stops what she is doing to let us know she can hear a bird sing or a door squeak. She makes lots of noise, but her speech production is still very limited. Her facial muscles seem to be a bit more pliable, since she now smiles more readily and she can pucker and make kissy noises. We are hopeful that the latest mapping of her device will help her to begin to hear some of the softer sounds she needs to hear. Her mappings are now being done on the John Tracy Clinic campus since the House Ear Institute had lost it’s funding for these services. For us that meant the special FDA approval which was granted for Amelia was also lost and they had to begin the approval process all over again. It took six months! Just in time for Amelia to need her next adjustments. God’s timing is always perfect, isn’t it?<br />Erikahttp://www.blogger.com/profile/02511969901128830723noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-65705292963034527372013-07-14T00:30:00.000-07:002013-07-14T00:42:12.509-07:00SummertimeOur summer started off with a family trip to Lake Tahoe to celebrate my parents 50th wedding anniversary (congratulations Omi and Opa!!).<br />
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We also celebrated Amelia's 4th birthday while we were there.<br />
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My mom, Siena, Amelia and I are currently attending the International Summer Session at John Tracy Clinic in LA. Click on the link below for more information.<br />
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<a href="http://www.jtc.org/parents/summer-session-info">http://www.jtc.org/parents/summer-session-info</a><br />
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We just finished our first of three weeks of classes and have learned so much already. While Amelia is in her preschool class, Siena is in a class for older siblings and my mom and I are in parent/caregiver classes. Not only are we learning so much from the teachers and specialists, we have also met so amazing families from around the world who are dealing with many of the same issues we are.<br />
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Perhaps one of the most exciting things for us is that there are 2 other families with children with ABIs here as well. Ted and his family are from Singapore and they were actually in Italy the same time we were so he has the same hearing birthday as Amelia. We spent what was probably the most intense 6 weeks of our lives together in Italy and it is wonderful to see them again. We are also excited to finally meet Evie and her family (from England). Evie received her ABI in Italy about 3 months after Amelia and Ted. All 3 kids are doing well and they seem to gravitate towards each other in the preschool class. It is not very often we are able to spend time with other ABI families so this is very special. <br />
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Siena is loving the sibling class and immediately bonded with a very nice girl from Ireland. The siblings are learning about hearing loss and the special role they have our families but mostly they are just having fun playing and being silly.<br />
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On Friday, an LA news station ran a short story about JTC and featured Amelia. In the video, Ted is the little boy standing up in class and Evie is the little girl in pink next to Ted. Of course big sister Siena is helping out in the video as well.<br />
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<a href="http://abclocal.go.com/kabc/story?section=news/health/your_health&id=9171314">http://abclocal.go.com/kabc/story?section=news/health/your_health&id=9171314</a><br />
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We are continuing to use a total communication approach with Amelia (sign language and auditory-verbal) because while we are working on her auditory skills, we don't want to lose her growth in language as a whole and not be able to communicate with her. We are learning lots of new skills to help her and also to empower us to be even better advocates for her.<br />
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Amelia has grown so much this summer already. I think she is finally potty trained (yippee!!) and she is teaching her animals to sit on the potty as well :).<br />
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She also wrote her name for the first time in class on Friday morning. We have never seen her even attempt it before but she saw another girl write her own name so decided she needed to as well. She didn't miss one letter! Tonight, DJ caught her on video drawing a person on her chalkboard for the first time. She erased it almost as quickly as she drew it so luckily he caught her just in time. Amelia usually prefers to watch us color and draw instead of doing it herself. She seems to just take everything in and learns so quickly through observation. Then she surprises us by being able to do things without us actually teaching her how to do it. Amazing.<br />
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<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-66573440636072642942013-03-11T00:17:00.000-07:002013-03-11T00:17:58.814-07:00Update from Erika (Omi) from February 2013Wow! It’s been three months since last real update. Sorry! Life just moves along at such a rapid pace and we don’t often stop to take stock. Kristina has been posting little updates on Amelia’s facebook page, but of course not all of you see those.<br />
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Amelia’s hearing and comprehension is progressing, but at a very slow pace. She gets speech therapy several times a week, some at school and some at Rady Childrens Hospital. She has had a number of colds this winter (the preschool kids just seem to pass those germs around) and that interferes with her school attendance and with learning. Her vocalization is better, but still very limited. Her cleft lip and palate probably have something to do with that. It’s so cute to see her try to pucker her lips to make an “ooo” sound. And she is now turning much more often when we call her name.
Amelia makes a lot of noises, but we have to work very hard to make her produce the sounds we want and it does get frustrating. But last week there was a little milestone! Kristina and DJ were observing a speech therapy session when Amelia suddenly turned to Kristina and said “mama”. Yipee! That was the first time she said it without lots of prompting.<br />
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In January Amelia had another mapping session at the House Ear Institute in. Getting the right settings for her to access certain sounds seems to be a very tricky business and it’s a matter of trial and error to find the right program. There is not a lot of data to learn from since there are so few children with this device.<br />
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Amelia suddenly got a high fever and a rash on a Saturday evening a few weeks ago and Kristina had to take her to the emergency room. I met her there and we spent almost five miserable hours being shuffled around the hospital with a very anxious little girl. She ended up having scarlet fever (strep with rash) and we had to start her on a course of antibiotics. Amelia is still terrified of hospitals and I got to experience how hard it must have been to go through all the procedures she had to endure in Italy. Being a parent of a child with lots of medical problems is definitely not easy! At the same time, she stopped responding to sounds (even loud environmental sounds that she always responds to) and we were having trouble deciding if it was because she was sick or if the processor was not working properly. Her amazing team at Med-El and House were able to get a new processor with her programs already loaded on it to us very quickly and she is back to her normal hearing levels. Yay!<br />
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Our family participated in the Mitchell Thorp Walk/Run again this year. This wonderful foundation helped us with our fund raising last year and we just wanted "pay it forward" for some other deserving children with dire medical needs and overwhelming medical costs. It was a beautiful day and lots of money was raised for this worthy effort.<br />
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We have decided that Amelia needs both sign and oral language. At school she gets only auditory-oral, but at home we sign and talk. Unfortunately, no schools in the area have a total communication program which is what we feel Amelia needs at this time so we are working with the school district to create a program that will work for her. A new sign language class for parents and caregivers has started recently and we are beginning to learn how to read little stories with her. She needs more than just pictures and single words and we need to get more creative to keep that busy little brain challenged. Of course this challenges our brains as well, but that may be a good thing!<br />
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I’ll end with a little story to make you chuckle. Amelia was eating cereal and was looking at the colorful box of Lucky Charms on the table. She had already commented on the rainbow and the elf (leprechaun) when she pointed to the piece of masking tape I had used to keep the box closed. I couldn’t remember the sign for tape, so I signed “band-aid”. She looked concerned and asked if the box got “hurt”?<br />
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Love and blessings!<br />
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Erika
kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-65079120654305257602012-11-19T17:41:00.000-08:002012-11-19T17:41:40.164-08:00Happy Thanksgiving <!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: inherit;">Thanksgiving is approaching and since we count all of you
among our blessings and are so thankful for your support, we thought we’d give an
update on what’s happening with Amelia these days.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">She is always a very busy little girl!<span style="mso-spacerun: yes;"> </span>Monday to Friday she goes to pre-school from
8am to 1pm and has adapted quite well to the daily class routine.<span style="mso-spacerun: yes;"> </span>She knows where to put her backpack, her
lunchbox and her jacket and where to sit at circle time.<span style="mso-spacerun: yes;"> </span>She learns by watching the others and does
her best to participate in all the activities.<span style="mso-spacerun: yes;">
</span>The children are fairly tolerant of her, but she is learning that she
has to take turns and cannot just push anyone around or take what she
wants.<span style="mso-spacerun: yes;"> </span>This is important for her to
know.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="http://2.bp.blogspot.com/-XBFkfUQ0PrQ/UKnvRTBvfkI/AAAAAAAAAiU/0jayPbBDmRY/s1600/IMG_1831.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-XBFkfUQ0PrQ/UKnvRTBvfkI/AAAAAAAAAiU/0jayPbBDmRY/s320/IMG_1831.JPG" width="240" /></a></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Out on the playground she is more comfortable now that she
is familiar with the layout and has even joined the “gang” when they ride their
little tricycles in a big circle.<span style="mso-spacerun: yes;"> </span>She
has mastered the curly slide and scares the teachers when she climbs some parts
of the play structure.<span style="mso-spacerun: yes;"> </span>Her sense of
balance and her vision continue to be a concern to all of us, and she does not
like to walk anywhere outside without holding someone’s hand.<span style="mso-spacerun: yes;"> </span>We make her do it, but she complains all the
way! She receives physical therapy two times a week at school and twice a month through Rady's Children's Hospital.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="http://2.bp.blogspot.com/-XK2VE_cGPZA/UKnwGowG31I/AAAAAAAAAic/giubAoE34aE/s1600/amelia+on+trike+at+school.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-XK2VE_cGPZA/UKnwGowG31I/AAAAAAAAAic/giubAoE34aE/s320/amelia+on+trike+at+school.jpg" width="320" /></a></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Three or four times a week all the children have a 20 minute
speech therapy session and in Amelia’s case they are still working on learning
to identify and respond to the basic “ling” sounds which are aaah,<span style="mso-spacerun: yes;"> </span>eee, ooo, shhh, mmm and ssss.<span style="mso-spacerun: yes;"> </span>Some days she responds well to them, other
days not so much.<span style="mso-spacerun: yes;"> </span>The speech therapist
uses different objects and games to make learning fun and Amelia likes the
interaction.<span style="mso-spacerun: yes;"> </span>Being the rascal that she
is she often does things “wrong” on purpose, because she thinks it’s
funny.<span style="mso-spacerun: yes;"> </span>Her own vocalization is still
very limited.<span style="mso-spacerun: yes;"> </span>She basically makes one
sound but uses it in a variety of different ways.<span style="mso-spacerun: yes;"> </span>When she is asked to repeat a word she gets
the number of syllables right almost every time.<span style="mso-spacerun: yes;"> </span>This learning process is going at a very slow
pace and we try not to get frustrated.<span style="mso-spacerun: yes;">
</span>We often think that she understands a lot more than she lets on, but only
Amelia knows for sure! She also has speech therapy once a week through Rady's Children's Hospital and we work with her at home.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: inherit;"><a href="http://3.bp.blogspot.com/-WUvtCRqmh4Y/UKnxJSZjwnI/AAAAAAAAAis/SuZp7UVZ9Mw/s1600/IMG_2138.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://3.bp.blogspot.com/-WUvtCRqmh4Y/UKnxJSZjwnI/AAAAAAAAAis/SuZp7UVZ9Mw/s320/IMG_2138.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Working on ling sounds with DJ and Siena</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;">Since she has to be driven to school in the morning and the
teacher encourages parent participation we all take turns driving her and then
spending a little time in the class room to observe and help out.<span style="mso-spacerun: yes;"> </span>We have also taken the big step of letting
Amelia ride home on the school bus.<span style="mso-spacerun: yes;"> </span>Only
two little girls are on this run (strapped into special safety harnesses) and
it is only a 15 to 20 minute ride.<span style="mso-spacerun: yes;"> </span>The
morning run would take about an hour and a half and that is just not acceptable.</span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="http://1.bp.blogspot.com/-CzCkEQHzyPM/UKnuvGdnfQI/AAAAAAAAAiA/QeODwUpNLbk/s1600/IMG_1904.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-CzCkEQHzyPM/UKnuvGdnfQI/AAAAAAAAAiA/QeODwUpNLbk/s320/IMG_1904.JPG" width="320" /></a></span></div>
<span style="font-family: inherit;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="http://2.bp.blogspot.com/-EGBV8UqH6k0/UKnu10un9hI/AAAAAAAAAiI/PMJp0jX_LWc/s1600/IMG_1905.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-EGBV8UqH6k0/UKnu10un9hI/AAAAAAAAAiI/PMJp0jX_LWc/s320/IMG_1905.JPG" width="320" /></a></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">Amelia is constantly on the move and
wants to be as independent as possible.<span style="mso-spacerun: yes;"> </span>We remember Siena saying “I do it byself” and although Amelia can’t say
it, she lets us know that she does not need any help!<span style="mso-spacerun: yes;"> </span>She knows where everything goes and insists
on putting it there.<span style="mso-spacerun: yes;"> </span>She wants to dress
herself and help with laundry and dishes and making the beds, well she
tries!<span style="mso-spacerun: yes;"> </span>She also can be very noisy and
has learned to squeal with gusto just like her big sister.<span style="mso-spacerun: yes;"> </span>Her favorite toys are Siena’s big doll house
(which is a great learning tool) and books and puzzles of all types.<span style="mso-spacerun: yes;"> </span>She has recently started enjoying watching TV
and loves the Signing Times videos.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: inherit;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: inherit;"><a href="http://1.bp.blogspot.com/-q7hmLYbyM8M/UKnwstpCCmI/AAAAAAAAAik/H3B6I925YAY/s1600/IMG_2145.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="http://1.bp.blogspot.com/-q7hmLYbyM8M/UKnwstpCCmI/AAAAAAAAAik/H3B6I925YAY/s320/IMG_2145.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Amelia and Siena watching Signing Times</span></td><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;"><br /></span></td></tr>
</tbody></table>
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<span style="font-family: inherit;">She absolutely never stops and we have to watch her
carefully, because she knows how to open doors, turn on fans and work the
remote control of TV and VCR.<span style="mso-spacerun: yes;"> </span>But she
also sleeps very well, ten or more hours a night.<span style="mso-spacerun: yes;"> </span>Naps are rare, but occasionally she still
needs them.<span style="mso-spacerun: yes;"> </span>After a day with Amelia, we
usually need one too!</span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">We hope this will give you some idea of where we are in Amelia's
development.<span style="mso-spacerun: yes;"> </span>It’s an exciting time for all of us but it can also be overwhelming. We feel a lot of pressure to make sure we are doing the right thing and providing Amelia with everything she needs to be successful. We are learning as we go and know will have to make many adjustments along the way. It is comforting to know we are surrounded by so many people keeping us in their thoughts and prayers. We are so thankful for all of your love and support!</span><br />
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<span style="font-family: inherit;"><b><span style="mso-spacerun: yes;"> Ha</span>ve a very Happy Thanksgiving!</b></span></div>
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<span style="font-family: inherit;"><a href="http://4.bp.blogspot.com/-byKpq0JERhs/UKn4HjJJtlI/AAAAAAAAAjA/cS4xbRr-RYU/s1600/thanksgiving+artwork.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-byKpq0JERhs/UKn4HjJJtlI/AAAAAAAAAjA/cS4xbRr-RYU/s320/thanksgiving+artwork.jpg" width="239" /></a></span></div>
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kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-70357625358685092252012-09-18T14:51:00.000-07:002012-09-18T14:51:40.483-07:00Rock-a-bye -BabySeptember 15th, 2012 <br />Yesterday Oceanside clocked 108 degrees. It was a record breaker, but not one we ever really wanted to achieve! Most of us don’t have air conditioners here, because usually we only need them a few days of the year, so you can imagine how miserable we all were. Thankfully a section of our house is air conditioned and we spend our day in those rooms waiting for the heat to pass. Yesterday I received a very unexpected blessing that really brightened my day!<br />Amelia was here with us. She had just completed her first four day school week and she was enjoying some down-time just playing with her toys. She makes a lot of noise these days when she plays, nothing in any way recognizable, but she seems to like it. We had to go out briefly to go to her physical therapy appointment and she worked hard at climbing stairs and walking on uneven surfaces (which she absolutely hates!). Amelia does not seem to need a nap anymore, but after lunch we sat together in my rocking chair and I was singing songs to her. Now you need to remember that songs or music have never been a part of Amelia’s experience and she only recognizes a few songs from her speech therapy sessions. Since she does not like to sit still, she was participating with her hands and doing “the wheels on the bus” and the “itsy bitsy spider” as I was singing. She got quieter and quieter and suddenly I realized I had actually sung her to sleep for the very first time ever! What a tremendous feeling! Usually when I rock her she has just had her bath and is not wearing her hearing device, so she can’t hear anything, but this time she actually listened and enjoyed it. Wow!<br />Isn’t it amazing how much we take for granted with our “normal” babies? Singing to them is something we do automatically and without giving it a thought. For Amelia this is brand-new and another aspect of her changed existence. I am so thankful!<br /><br />Erikahttp://www.blogger.com/profile/02511969901128830723noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-64270574888015315572012-09-16T23:16:00.003-07:002012-09-17T18:14:11.686-07:00A dad's perspective<i>DJ wrote this essay for an on-line class he was taking while we were in Italy. He managed to express a lot of what we were feeling at the time as well as when Amelia was born and I wanted to share it with all of you (with his permission of course).</i><br />
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<div style="text-align: center;">
<span style="font-size: large;"><b>Hope for Hearing</b></span></div>
<div style="text-align: center;">
<b><span style="font-size: small;">DJ Heston</span></b></div>
<div style="text-align: center;">
February 2012<br />
<br /></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>As my wife and I sit waiting for any news from the
doctors an uneasy feeling floods my brain.<span style="mso-spacerun: yes;">
</span>It has been over four hours since our daughter went in for surgery.<span style="mso-spacerun: yes;"> </span>Doctors and nurses come and go at a dizzying
pace but no one stops to shed light on Amelia’s progress.<span style="mso-spacerun: yes;"> </span>Maybe it’s the language barrier - this is one
of the excuses I am using to reassure myself.<span style="mso-spacerun: yes;">
</span>Badges are swiped at one door, pin codes punched at another.<span style="mso-spacerun: yes;"> </span>It’s cold.<span style="mso-spacerun: yes;">
</span>The operating rooms are in the basement of the hospital and it is
snowing outside.<span style="mso-spacerun: yes;"> </span>She has endured numerous
surgeries so far but this one is very different from all of the others.<span style="mso-spacerun: yes;"> </span>This one was elective not mandatory.<span style="mso-spacerun: yes;"> </span>This was brain surgery with irreversible
consequences if something went wrong.<span style="mso-spacerun: yes;"> </span>This
was <i style="mso-bidi-font-style: normal;">our</i> decision.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>My wife’s pregnancy seemed pretty typical considering
this was our second child.<span style="mso-spacerun: yes;"> </span>This is easy
for me to say because I did not have a child growing inside me; although I did
eat for two on several occasions.<span style="mso-spacerun: yes;"> </span>Since
my wife had just turned thirty five she was subjected to a little more prenatal
screening than the average mother-to-be.<span style="mso-spacerun: yes;">
</span>Every test came back normal.<span style="mso-spacerun: yes;"> </span>She
called me at work and within forty five minutes after arriving at the hospital,
our second daughter was born.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>Disbelief is the only way to describe my emotions.<span style="mso-spacerun: yes;"> </span>I remember thinking of ads in the newspaper with
charity organizations showing images of children in South America with cleft lips;
they were tough to look at.<span style="mso-spacerun: yes;"> </span>This was
Amelia.<span style="mso-spacerun: yes;"> </span>She was born with a cleft lip
and palate, eyelid colobomas, large skin tags, and a hole in her heart.<span style="mso-spacerun: yes;"> </span>She was rushed by ambulance to Children’s
Hospital where she would spend another three weeks.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>The doctors diagnosed her with facio auriculo vertebral spectrum.<span style="mso-spacerun: yes;"> </span>This is a broad diagnosis which lumps
together multiple disorders into the same conclusion.<span style="mso-spacerun: yes;"> </span>While it was comforting to hear her
abnormalities identified, it meant little to us.<span style="mso-spacerun: yes;"> </span>Certain images of the future became
obscured.<span style="mso-spacerun: yes;"> </span>Following the birth of our
first daughter, at particular moments I could picture myself in my parent’s
shoes.<span style="mso-spacerun: yes;"> </span>I could see my child going to
school, getting married and having children.<span style="mso-spacerun: yes;">
</span>All of these notions came to a screeching halt.<span style="mso-spacerun: yes;"> </span>Would Amelia ever be normal?<span style="mso-spacerun: yes;"> </span>Would she ever be able to lead a normal life?</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>The fifth day in the hospital a specialized ophthalmologist
performed surgery on Amelia’s left eyelid.<span style="mso-spacerun: yes;">
</span>Three months later, she had surgery on her other eyelid and had her
cleft lip repaired.<span style="mso-spacerun: yes;"> </span>At eleven months old
surgeons repaired her cleft palate and reconstructed her left eyelid.<span style="mso-spacerun: yes;"> </span>She had a few other surgeries in between to
replace tubes in her ears to relieve fluid accumulation.<span style="mso-spacerun: yes;"> </span>We had some amazing doctors.<span style="mso-spacerun: yes;"> </span>Amelia would not have progressed so far
without their expertise in their respective fields.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>Most newborns receive their newborn screening within the
first twenty four hours after birth to determine their ability to hear.<span style="mso-spacerun: yes;"> </span>Amelia had so many other postpartum
complications that she did not receive her hearing test until a few days later.<span style="mso-spacerun: yes;"> </span>When she failed it, we were not overly
concerned.<span style="mso-spacerun: yes;"> </span>It is not uncommon for
newborns to fail the newborn screening test.<span style="mso-spacerun: yes;">
</span>Then she failed her BAER test.<span style="mso-spacerun: yes;"> </span>In
the months that followed we came to the stark realization that Amelia was deaf.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>Deafness is not the end of the world.<span style="mso-spacerun: yes;"> </span>American Sign Language or ASL has become more
common and is being taught in some schools and colleges.<span style="mso-spacerun: yes;"> </span>My wife took a baby sign language class with
our first daughter which really helped her communicate before she could
actually speak.<span style="mso-spacerun: yes;"> </span>Since Amelia was born
with special needs, we were enrolled in the early start program and had a sign
language instructor come to our house every other week.<span style="mso-spacerun: yes;"> </span>ASL has played a valuable role in our family
by helping us communicate to Amelia and her to us.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span><span style="mso-spacerun: yes;"> </span>While ASL has
been a tremendous help we still pondered the possibility of Amelia being able
to hear.<span style="mso-spacerun: yes;"> </span>Currently, many children who
are born deaf receive cochlear implants before the age of two.<span style="mso-spacerun: yes;"> </span>A cochlear implant is a device that is
implanted under the skin near the ear which stimulates the auditory nerve and
produces sound.<span style="mso-spacerun: yes;"> </span>Researchers and doctors
have stressed the importance of implanting children at a very young age to
obtain the best results.</span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>A cochlear implant seemed like a viable solution until we
learned Amelia was missing her auditory nerves.<span style="mso-spacerun: yes;">
</span>An MRI of Amelia’s skull confirmed this fact.<span style="mso-spacerun: yes;"> </span>A cochlear implant would not work.<span style="mso-spacerun: yes;"> </span>Amelia’s audiologist e-mailed us an article
about a procedure called an auditory brainstem implant or ABI.<span style="mso-spacerun: yes;"> </span>ABI’s are similar to cochlear implants except
for the electrode is placed on the brainstem.<span style="mso-spacerun: yes;">
</span>It is a very complicated and serious surgery.<span style="mso-spacerun: yes;"> </span>More importantly, it is not approved by the
FDA for children less than twelve years of age.<span style="mso-spacerun: yes;">
</span>After some research we learned of a doctor in Italy, Dr. Colletti, who
has successfully implanted children and achieved tremendous results.<span style="mso-spacerun: yes;"> </span>We sent him Amelia’s medical records and
waited for a response.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span><span style="mso-spacerun: yes;"> </span>When we received
confirmation from Dr. Colletti that Amelia was indeed a candidate for an ABI
and he was willing to perform the procedure we were at a crossroads.<span style="mso-spacerun: yes;"> </span>Amelia had recently turned two and had
progressed beyond our expectations.<span style="mso-spacerun: yes;"> </span>She
had started to walk and was using more sign language every day.<span style="mso-spacerun: yes;"> </span>Do we risk her future on a procedure that
could leave her brain damaged?<span style="mso-spacerun: yes;"> </span>While the
chances are slim, there is a chance that the wrong area of the brainstem could
be touched leading to seizures and brain damage.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>There was also another factor which weighed heavily in
our decision: price.<span style="mso-spacerun: yes;"> </span>The procedure was
about ninety thousand dollars and not covered by insurance.<span style="mso-spacerun: yes;"> </span>I had been laid off from my job of over
fifteen years and returned to school.<span style="mso-spacerun: yes;"> </span>My
wife and I are prideful people but there was only one way to give Amelia the
opportunity to hear: ask for help.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>While I was reluctant to share our hardships with
everyone, I was also very concerned about coming up short on fundraising.<span style="mso-spacerun: yes;"> </span>What if we only raise a few thousand
dollars?<span style="mso-spacerun: yes;"> </span>What if we raise a tenth of the
money?<span style="mso-spacerun: yes;"> </span>We will have to come up with the
balance.<span style="mso-spacerun: yes;"> </span>There is no turning back once
we start receiving donations.<span style="mso-spacerun: yes;"> </span>We can’t
say, “We came up well short of our goal and won’t be able to go ahead with the
procedure, but thank you for your contribution.”<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>Overwhelming is the only way to describe the support we
received.<span style="mso-spacerun: yes;"> </span>My wife’s co-workers held a
fundraiser at a park.<span style="mso-spacerun: yes;"> </span>An acquaintance
had a neighbor who hosted a fundraiser at her restaurant.<span style="mso-spacerun: yes;"> </span>A friend of ours obtained sponsors and ran a
half-marathon.<span style="mso-spacerun: yes;"> </span>My wife’s parents went to
church with a family who held an annual walk-a-thon through their non-profit
organization.<span style="mso-spacerun: yes;"> </span>The organization supported
families whose children suffered from illnesses and disorders and they
generously accepted Amelia as one of their beneficiaries.<span style="mso-spacerun: yes;"> </span>Five months later we have reached our
goal.<span style="mso-spacerun: yes;"> </span>It is very humbling to have so
many people pitch in to help change our daughter’s life.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;"><span style="mso-tab-count: 1;"> </span>We finally see a familiar face appear through the secured
double doors. Dr. Colletti must have seen the look of consternation on our face
and approaches.<span style="mso-spacerun: yes;"> </span>In perfect English with
the obligatory Italian accent he asks, “Has anyone talked to you yet?”<span style="mso-spacerun: yes;"> </span>When we reply “no” he reveals, “Amelia is okay,
they are just finishing up.<span style="mso-spacerun: yes;"> </span>The implant
looks great, great potential!”<span style="mso-spacerun: yes;"> </span>What a
relief.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: "Arial","sans-serif"; font-size: 12.0pt; line-height: 200%;">It
has been five weeks since the surgery and here we sit, in fair Verona.<span style="mso-spacerun: yes;"> </span>The device gets activated on Monday, the day
before we leave.<span style="mso-spacerun: yes;"> </span>It is turned on at
extremely low levels at the beginning and is finely tuned over months and
years.<span style="mso-spacerun: yes;"> </span>The decision to proceed with this
surgery has been one of the toughest decisions my wife and I have ever
made.<span style="mso-spacerun: yes;"> </span>Before we embarked on this whole
journey our five year old daughter asked, “When Amelia turns four, will she be
able to hear me call her name?”<span style="mso-spacerun: yes;"> </span>Let’s
hope.</span></div>
<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com1tag:blogger.com,1999:blog-294023697982297596.post-20922970524929637772012-08-29T15:33:00.004-07:002012-08-29T15:33:53.883-07:00Amelia's first day of preschoolAmelia started an auditory preschool program for deaf and hard-of-hearing children today. She has been wanting to go to school ever since her sister Siena started last week. She was very excited to get a new backpack last night and help pack her own lunch. <br />
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<a href="http://1.bp.blogspot.com/-F8eRmBcwjjA/UD6WWQjtPnI/AAAAAAAAAhA/bONZfN3sT14/s1600/IMG_1757.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" fea="true" height="240" src="http://1.bp.blogspot.com/-F8eRmBcwjjA/UD6WWQjtPnI/AAAAAAAAAhA/bONZfN3sT14/s320/IMG_1757.JPG" width="320" /></a></div>
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Amelia will be going to school 4 days a week for 5 hours a day. We were a little worried it would be too long of a day for her but she was so busy playing when we arrived to pick her up that she barely even noticed us standing there.</div>
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I suppose I can take the small bruise to my ego if it means she is enjoying herself :). Her teacher and the rest of the staff are wonderful and we are looking forward to a great first year at school and all of the accomplishments it will bring.</div>
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kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-44342211516906490962012-08-28T20:39:00.001-07:002012-08-29T10:54:50.268-07:003rd mapping at House Ear Institute<div class="separator" style="clear: both; text-align: center;">
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Here are a few pictures and videos from Amelia's third mapping. It is very exciting to watch her become more and more aware of all the sounds around her. We are working on trying to get her to recognize more speech sounds. Every night DJ and I play the "listening game" with her to check her response to the Ling-6 sounds. These sounds represent speech sounds from low to high pitch and help us as well as her audiologists gain a better understanding of the quality of the sounds she hears. The sounds are "ah", "ee", "s", "sh", "oo" and "m". We had been able to get consistent responses to all of these sounds expect "oo" and "m" so at this mapping session, the audiologists are trying to adjust the programming on her ABI to see if we can get better responses. This was a few weeks ago and with the changes, we are now getting a few responses to those sounds but still not as consistently as the other ones.<br />
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In this next video, Amelia's ABI is connected to the computer and each electrode is being tested separately. A sound plays through the device and when she hears it she responds by looking at the video monitor and placing a puzzle piece in the puzzle.</div>
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Ok, I'm having trouble uploading the video so I will try to update this post tomorrow......<br />
<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-13221025841739094302012-07-31T22:27:00.001-07:002012-07-31T23:12:35.883-07:00When Cochlear Implants are Not an Option Please click on the link below to see an article from House Ear Institute about Amelia.<br />
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<a href="http://www.houseresearch.org/stories/articles/aheston.html">When Cochlear Implants are Not an Option</a><br />
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<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-64897854383981657262012-06-26T13:39:00.002-07:002012-06-26T13:40:46.760-07:00Guess who's 3 today!I can't believe Amelia is 3 years old today! We have been having fun celebrating her birthday. We started on Sunday afternoon with a party with friends and family.<br />
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Yesterday we went to SeaWorld......... </div>
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And now we are off to the Del Mar Fair. Do we know how to celebrate a birthday or what?!kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-53970981294606135892012-06-19T22:23:00.000-07:002012-06-19T22:23:27.296-07:00Father's Day Fun<div class="separator" style="clear: both; text-align: center;">
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Sunday we had fun celebrating Father's Day and thanking DJ for being the amazing dad/husband he is. <br />
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After breakfast, Siena and Amelia gave DJ the cute cards they made for him at school. <br />
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Then we drove to South Carlsbad State Beach to check if they were any last minute beach sites available for Sunday night. Luckily, there was a campsite available so we rushed home and packed up our stuff as quick as possible and headed back to set up camp.<br />
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Then spent the rest of the day relaxing, playing,<br />
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and enjoying the beach (even if it was a little chilly and overcast).<br />
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No camping trip is complete without s'mores.<br />
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<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-34028815979745099122012-06-19T09:35:00.000-07:002012-06-19T19:31:29.658-07:00More noise!Tom and I were away for two weeks vacationing in sunny Aruba and had a wonderful time. We came back tanned and rested, or so I thought until two days after we returned and I came down with some sort of bug (cold/flu etc.) that kept me in bed for days. Okay, enough whining from me! I know what you really want to know...... <br />
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Kristina and DJ took Amelia to her second mapping appointment at the House Ear Institute on May 30 and it went very well. Using clever tests and games they were able to get a response from all 12 electrodes this time which is great news. (At the last visit it was only 5.) She also has a new coil on the back of her head and this one is pink. It goes with the pink battery pack behind her ear which is a bit smaller than the old one since it only holds two batteries instead of the previous three. This one fits better and does not put as much strain on her ear. Also her hair is growing in again and will probably soon hide more of the appliances. At the moment it’s a very cute little pixie hair do and most of it stands up on end. It’s all about style, isn’t it?<br />
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Amelia appears to be hearing more things all time and is becoming more aware of her surroundings. She’s also much noisier! While before she would often play very quietly and we constantly had to go looking for her, she now makes lots of “baby sounds” while she plays. Sometimes they are soft sounds, but often very loud too. She seems to be experimenting with patterns and noise levels. Just as she used to sign to herself when she looked at her books, she now makes sounds at the same time. We just love hearing her “chatter” like that.<br />
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The HOPE speech therapy is still going on twice a week and those dedicated and clever ladies have managed to extend her coverage through the end of the summer. Amelia loves to see them come and is eager to play the games they use to coax sounds out of her. She’s able to produce a fairly good “mmm” now and learning to differentiate between “ooo’s” and “aaa’s” and “eee’s”. She’s not consistent with this yet and she tries to cheat when she has to repeat the same sound too often. She just gets louder and higher as if to say, “There - take that!”.<br />
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Amelia does well with patterns of sounds. “Quack, quack, quack” becomes “ah, ah, ah” and “beep, beep” sounds like “eh, eh”. She enjoys it when we sing little songs like Old Mac Donald and the Wheels on the Bus to her, even though we have no idea how much she actually understands. And she has developed a new interest in the toys that produce sounds. She’ll push those buttons over and over until we want to run screaming from the room. The other day I saw her “counting” her ten stacking cups. She touched each one in turn and made a little sound with each touch. Thrilling!<br />
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We are all trying very hard to use more words and less sign language in order to force her to focus on hearing, but it’s not easy, just like breaking any other habit. We also want so much for her (and all of us) to continue growing and developing in ASL. We were told to orally “narrate her life” as we go through every day activities. “Time to wash your hands. Wash, wash, wash. Come and sit in your chair. Up you go! Up, up, up. Now take a bite. Would you like an apple? Here’s your apple. It’s a yummy apple. Take another bite. Now drink your milk. Mmmm, milk. Milk is good.” And so on and so on. It’s exhausting, but if it’s best for Amelia, we can do it!Erikahttp://www.blogger.com/profile/02511969901128830723noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-47268601508812519522012-05-14T00:52:00.000-07:002012-05-14T00:52:18.150-07:00Mother's Day weekendI took Friday off of work so I could attend a Mother's Day Tea (juice and muffins actually) at Siena's kindergarten class. It was so much fun watching the kids sing and dance and they made all of us beautiful placemats. Her teacher said she learned lots of interesting "facts" about all of us ladies.....haha....I'm sure she did :).<br />
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I was home in time to hang out with Amelia while she finished breakfast and I recorded this amazing video of her "talking". This is the best response to speech sounds that we have seen yet :)<br />
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I'm sorry it is so short but I ran out of space on my camera card. She repeated these sounds throughout the day. We changed her ABI to a new program on Sat and she has done it once or twice since then.<br />
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Then I took Amelia to her physical therapy session. My mom usually takes her so it was great to get the chance to see her in action. Amelia has a new therapist and I was very impressed with her. As usual, Amelia was very excited to participate in all of the different activities.<br />
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Amelia and I picked Siena up from school and we headed to Golden Spoon for some frozen yogurt.<br />
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Today, DJ made crepes for breakfast and they were delicious :). Then we delivered cookies to our two awesome moms/grandmas, visited with some friends, and took a walk on the beach. It was a beautiful day and I enjoyed spending it with my family.<br />
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Happy Mother's Day!</div>
<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-82872960961690252452012-05-01T22:25:00.000-07:002012-05-01T22:26:11.082-07:00Amelia's in the mixAmelia is a busy body! She <strike>wants</strike> needs to be involved in everything. I can't tell you how many times she has smashed our toes with her step stool while following us around the kitchen trying to "help" with cooking, washing dishes, loading the dishwasher, ... everything! Naturally, she especially wants to do everything Siena does. Siena is such an awesome big sister. She is very patient with Amelia and really<b> </b>wants her to be able to hear and talk. Luckily she is a great role model since she talks non-stop all day long :). She teaches Amelia many new things everyday without even realizing it.<br />
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I'm sure it must be difficult for Siena to have a little sister that gets so much attention. Everyone is always asking about Amelia and we are always either taking Amelia to doctor/therapy appointments or having therapists come her to work with her. This isn't to say that Siena doesn't get plenty of attention from us and her doting grandparents but I'm sure it can be tough. She does get jealous at times but for the most part she takes it all in stride. It is her "normal" and jealously between siblings happens in all families, special needs or not.<br />
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This weekend we made up a new game for Amelia that Siena called musical hide and seek. Siena and I would take turns hiding and would play an instrument (usually a drum or tamborine) while Amelia looked for us. Amelia was really good at this game and was definitely locating where the sounds were coming from. We had lots of fun and I'm sure we will be playing musical hide and seek again soon.<br />
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Being a busy body has really helped with Amelia's therapy appointments. She is usually raring to go and can't wait to play with the new toys the therapists bring. She loves solving problems and puzzles. We went for her first mapping (sound adjustment) at House Ear Institute in LA on April 18th and she did great. It was a very long day (10:30 to 4:30 with an hour break for lunch) and she played and stayed engaged for the entire session. Finally, around 4 pm, she had enough and let us know she was over it. I think she fell asleep before we even got out of the parking garage!<br />
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Amelia is still responding consistently to loud sounds (clapping, loud kissing sounds, banging plates and silverware,....) and some softer sounds like keys jingling. She seems to be noticing new sounds daily. Today, for the first time, she responded to Hannah, our dog, barking at the door as well as the door bell. She does not seem to respond to voices yet except inconsistent responses to shhhh sounds. Her brain is still learning to listen. The last two days she has been incredibly vocal and repeats uhh, uhh, uhh over and over again so we are wondering if maybe she is beginning to hear her own voice and playing with controlling it. Every day is a new and exciting day in the Heston household :) Never a dull moment........<br />
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<br />kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-81740080255469449282012-04-15T09:07:00.001-07:002012-04-15T09:09:05.516-07:00How do you spell P-A-T-I-E-N-C-E? <br />Now that Amelia is back from Italy and has her ABI, we all just want to get on with it and see lots of improvement every day. So many people have asked me: Can she hear now? Can she talk yet? But that’s just not how it works! The process of learning to hear is very, very gradual and we have to be patient and allow Amelia to adjust to sounds at her own pace and in her own way. <br />And wanting to do things her own way is just what Amelia is all about at the moment. She is a two-year-old after all! The phrase, “she wants what she wants when she wants it, and she wants what she wants right now” could have been written just for her. And she lets us know exactly what “Amelia wants“. If Siena has it, “Amelia wants” it too. If there is something on my plate that looks different than what’s on her plate, “Amelia needs’ it. If you are wearing a necklace or a watch, “where’s Amelia’s?“ If she sees a book she would like to read, she points and signs “Amelia read book“ until we do it. If she feels like playing with a certain toy, she signs and prods us until we figure it out. If her toys are not set up the way she likes them, she rearranges them her way. If she decides that she does not want to do something, she lets us know that also. Her little hands are always busy and she’s signing all the time. And when we can’t read her signs a little fussing and whimpering usually gets the desired results. That is not to say that we have a little tyrant on our hands, because Amelia is usually a happy little girl and fun to be around. But she knows her own mind and makes sure we do too! <br />So what’s different since the operation? Well, Amelia can’t tell us what she is hearing, but we are very sure that her world is changing. She wants her ABI attached the minute she wakes up in the morning and again as soon as she gets up from her nap, which tells us that she is eager to experience whatever it has to offer. We see her playing with toys that make noise in a different way now. She has always enjoyed pushing buttons, but now she pushes them over and over with purpose. She wields the little wooden mallet on her peg-bench with much more enthusiasm, and when she claps her hands she now does it harder so that it produces a noise. She has no idea what any sounds mean or even where they come from, but little by little she will start to isolate noises and learn their meaning. She doesn’t seem to tune in to our voices yet (we are told that will take the longest), but she can tell when we make kissing noises! She recently learned to pucker up for a kiss, so we practice that a lot. She also loves to tap her spoon or fork on various dishes and glasses and it has become a game at every meal time. A few days ago she became interested in a squeaky dog toy and her plastic bucket full of Legos is now much more fun to shake and shake and shake. So there are many little signs of progress and we’re thrilled with each one of them. <br />And she hit one more milestone a few days ago. She jumped for the first time . . . both feet an inch off the ground at the same time, so exciting! This may not be a big deal for other kids her age, but without a balance nerve it’s an achievement. <br />Last week DJ took Amelia to the eye doctor and even though she has been there before and not gotten hurt in any way, she started whimpering while they were still in the elevator and kept it up during the whole examination. Obviously she has not forgotten her hospital experience, and we are concerned about her visit to the House Ear Institute next week. A representative from MedEl Europe will be flying to LA for this initial mapping of her ABI and to go over the programming with our audiologist there. <br />If Amelia cries the whole time it will make this process much more difficult. So, once again we are asking your prayers for Amelia to be calm and content while this important work is being done.Erikahttp://www.blogger.com/profile/02511969901128830723noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-9912082314124402912012-04-04T22:14:00.000-07:002012-04-04T22:14:31.556-07:00A quick update and some pictures<div class="separator" style="clear: both; text-align: center;"></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Amelia's ABI</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-km231RSMgyw/T30mEojyrcI/AAAAAAAAAZQ/9aF19ijbnKY/s1600/Amelia+with+doll+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-km231RSMgyw/T30mEojyrcI/AAAAAAAAAZQ/9aF19ijbnKY/s320/Amelia+with+doll+1.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She's very excited that her doll has an ABI too :)</td></tr>
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We are very pleased to report that Amelia is doing very well with her ABI. When she wakes up in the morning she points at her ear to let us know to put it on. She wants it off before her nap but asks for it immediately after she wakes up. She is responding consistently to loud sounds, esp clapping and tapping utensils on plates. We weren't expecting her to have any response to sounds for at least a month so we couldn't be happier with her results so far. We have her first appointment for mapping (sound adjustment) at House Ear Clinic on April 18th. A representative from MedEl Europe will be flying to LA for her initial map to go over the programming with our audiologist there.<br />
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We are busy trying to get back to our "normal" routine which means I have less time to do updates but I will do my best since I know so many people care about Amelia and are anxious to hear how she is doing :). kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com3tag:blogger.com,1999:blog-294023697982297596.post-12785484760430859492012-03-18T22:41:00.000-07:002012-03-18T22:41:10.172-07:00Video from morning after ABI was activated<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwMIFNCFUlcSfM7FuFpH6qd3d-_o5aEAhSbP376818Zr84zZ6eheZtQDeBlGmDplMOk9gGebhXzFfFN1iQBzw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>For those of you who are not on facebook, this is a video of Amelia the morning after her implant was activated. What a difference from the day before!!kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-45016661213065795022012-03-18T18:27:00.002-07:002012-03-18T18:35:34.979-07:00They're home (March 15th)<br />Tom picked up some very weary travelers at the airport late last night and we feel like we can breathe a little easier now that they are safely back home. Kristina said that Amelia was extremely anxious going through the airports and security screening and whimpered the whole time, but once she was settled in the airplane she did great during both long flights. Maybe she thought that the airport was still another hospital where she was going to get hurt in some way. Amelia has always been so completely trusting and accepting of everyone around her and we hate to see that this ordeal seems to have broken that trust. However, she is very young and I'm sure this experience will fade in her memory.<br /> I just returned from a quick visit to the Heston home to return some of Siena's clothing and they were busy unpacking and trying to get get their house back in order. They are planning to pick up Siena from school today and I know she will so excited to see them.<br /> Amelia was still in her pj's and was wearing her new hearing device. It looks like a button that is attached to the back of her head (on the right side) with a little wire leading to a small device which is clipped to her collar. She seems to have accepted this new addition to her person and does not seem to mind it at all. Her hair is growing in again and she looks like a little boy with his summer buzz cut. The scar behind her ear looks huge but seems to be healing nicely. She was happy to see me and she picked up right where she left off six weeks ago, hanging up my keys and making sure all the buttons on my sweater were fastened. :)<br /> These past six months have been such a whirlwind of activity for all of us, that we hardly know what to do at the moment. We are thankful, awed, relieved and more than a little tired. I guess we'll have to allow some time for settling down and then tackle the next chapter in Amelia's life which this learning to interpret and process sound. <br /> Stay tuned and please keep on praying. God is listening!Erikahttp://www.blogger.com/profile/02511969901128830723noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-18957004467790742392012-03-12T14:45:00.000-07:002012-03-12T14:45:46.004-07:00Activation DayPhew....what a day! We are all exhausted so I'm going to make this quick.<br />
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<div style="text-align: center;"><i> Amelia on the way to the hospital this morning</i>....</div><div style="text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-gVGpXYynxDQ/T15ekkBzmZI/AAAAAAAAAXg/IfbCgc2KRAA/s1600/photo%25284%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-gVGpXYynxDQ/T15ekkBzmZI/AAAAAAAAAXg/IfbCgc2KRAA/s320/photo%25284%2529.JPG" width="239" /></a></div><div style="text-align: center;"><i>so cute!!</i></div><div style="text-align: center;"><i> </i></div>We arrived at the hospital at 7:45 this morning. All 4 families were told to come at the same time (as usual) so Amelia was second in line to get her ABR (or BAER - auditory brainstem response). It is a test performed under sedation where electrodes are placed around her head to measure brain waves in response to various sounds. The test took about 1 hour and Dr Carner told us that she was responding to low levels of sound which makes him very happy because it means she has lots of potential. If it makes him happy, it makes us happy too since he knows what all of that means :). It was almost 1130 by then and he told us to return at 2:30 for her activation. <br />
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After a quick lunch at our apartment we tried to relax a little bit before returning to the hospital (didn't really work). Amelia didn't get a nap which is never a good thing. She also is getting worse and worse about going to the hospital. All we have to do is cross the street on the way to the hospital (and away from the park) and she starts crying and tugging to go in the opposite direction. Activation took about 45 minutes. There were 2 audiologists in the room as well as a representative from MedEl. Everyone was incredibly nice and there were many toys in the room to try to keep Amelia entertained.<br />
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Her device was hooked up to the computer and they went through the electrodes one by one according to her response in the ABR. Amelia cried the entire time! She responded very obviously when the electrodes were activated but usually that just meant crying even louder. She could hear for the first time!! It was a crazy mix of emotions for me as I was excited to see her respond but at the same time my heart was breaking while she was crying. The audiologists payed close attention to Amelia's responses and would turn the volume up and down as necessary. The device has 12 electrodes and 9 of them were activated (all 12 of them were tested and then the last 3 were turned off).<br />
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We took the device off and another MedEl representative went over all of the details of the device (batteries, charging, tiny pins that hold the device together... lots of little details). It took ~1/2 hr and Amelia cried during that as well (did I mention that she doesn't like the hospital - poor thing - too many shots, IVs and bandage changes).<br />
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I can't even imagine how different and scary all of this must have been for her. Her world is changing! We waited to put her device on again until later at our apartment when dinner was almost over. We were hoping some dessert might distract her. She was scared and did not want to wear it at first but she was much calmer than in the hospital. We left it on for about 20 minutes. We turned it off but left it on her head and we could immediately tell she noticed a change. She was very still for a few moments and seemed to be processing her newly acquired sense. We know she has an insatiable curiosity about the world around her so we are hopeful that leads to an eagerness to learn about sounds as well.<br />
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So much for making this quick......... My mind is very full and I have a lot to process so I will leave it at this for now.<br />
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Thanks to all of you for supporting us on this journey!kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com2tag:blogger.com,1999:blog-294023697982297596.post-89507547158812708332012-03-09T14:08:00.000-08:002012-03-09T14:08:25.350-08:00Our last week in ItalyIt's hard to believe we have been in Italy almost 6 weeks already! This last week we have spent relaxing and exploring Verona (well....DJ has been doing a lot of school work and maybe not as much relaxing as Amelia and I). On Monday Amelia's ABI will be activated and if all goes well, we will be leaving Verona on Tuesday afternoon. And giving Siena a big bear hug on Thursday :).<br />
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<div style="text-align: center;"><i>There are some seriously cool playgrounds around here:</i> </div><br />
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<div style="text-align: center;"><i>Amelia enjoying the bus ride:</i></div><br />
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<div style="text-align: center;"><i>Found some delicious gelato in the city center:</i></div><br />
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Tomorrow morning we are planning on checking out the farmer's market down the street.kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-61286841518044319742012-03-05T13:49:00.004-08:002012-03-05T15:01:45.778-08:00One day at a timeWe were able to go to the Dolomites in Northern Italy for a few days (in between hospital visits). We stayed in Castelrotto (or Kastelruth) in a beautiful hotel with amazing views all around. <br />
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One day we took a cable car to Alpe di Siusi. It is a vast alpine meadow with all different types of recreational activities available - skiing (downhill and cross-country), snowboarding and lots of hiking esp in the spring and summer. The weather was unseasonably warm while we were there but they were expecting more snow in a few days.<br />
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The Dolomites are very close to the Austrian border so most everyone there spoke Italian, German and English but German seemed to be the favored language. All of the names of places and menu items were written in both German and Italian. It didn't even feel like we were in Italy anymore. The architecture was completely different and we were able to get different types of food such as tyrolean dumplings (yummy!), sausages, strudels and delicious breads. It was a well-needed mini-vacation for us and we felt rested and rejuvinated when we returned to our apartment in Italy.<br />
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Today Amelia had her stitches removed :). The incision is healing nicely. We were hoping the bandage would be removed permanently but the doctors put a new one on again. It will be removed Thurs so we can deal with it for a few more days. Her skin is getting very irritated from the tape being put on and removed so many times (it is very sticky!) but hopefully her skin will recover quickly. <br />
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Her activation day is now scheduled for Mon the 12th. We are leaving for Milan on the 13th and flying home early on the 14th so hopefully it all works out. We are anxious to get home and see our family and friends (esp Siena - we miss her so much!).kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-38182973707222458352012-02-26T12:22:00.000-08:002012-02-26T12:22:33.634-08:00ah, 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 :).<br />
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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 :).<br />
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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 :)<br />
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Everyone got what they were looking for:<br />
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It was a fun place and I'm sure we will be back there again before we leave :).kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-71930128252113325022012-02-22T02:29:00.001-08:002012-02-26T12:32:33.482-08:00Enjoying our time our time out of the hospitalLate 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 :) )<br />
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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! <br />
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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.<br />
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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 :).kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0tag:blogger.com,1999:blog-294023697982297596.post-78789397369094803902012-02-16T09:24:00.002-08:002012-03-05T14:16:14.741-08:00still in hospital - day 14For 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!<br />
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-Amelia-<br />
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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.<br />
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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). <br />
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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.<br />
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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.<br />
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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.<br />
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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 :)kristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com1tag:blogger.com,1999:blog-294023697982297596.post-55593556862357917662012-02-12T08:41:00.000-08:002012-02-12T08:42:30.985-08:00AlicjaSurgery 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. <br />
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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. <br />
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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.<br />
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For more information about Alicja please visit<br />
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www.alicja.org<br />
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On Facebook - Alicja CHARGEkristinahttp://www.blogger.com/profile/01251439288378125649noreply@blogger.com0