Summertime

Our summer started off with a family trip to Lake Tahoe to celebrate my parents 50th wedding anniversary (congratulations Omi and Opa!!).

We also celebrated Amelia's 4th birthday while we were there.

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.

http://www.jtc.org/parents/summer-session-info

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.

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. 

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.

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.

http://abclocal.go.com/kabc/story?section=news/health/your_health&id=9171314

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.

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 :).

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.

Update from Erika (Omi) from February 2013

Wow! 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.

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.

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.

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!

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.

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!

 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”?

Love and blessings!

Erika 

Happy Thanksgiving

- by Erika and Kristina

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.  

She is always a very busy little girl!  Monday to Friday she goes to pre-school from 8am to 1pm and has adapted quite well to the daily class routine.  She knows where to put her backpack, her lunchbox and her jacket and where to sit at circle time.  She learns by watching the others and does her best to participate in all the activities.  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.  This is important for her to know.  

 

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.  She has mastered the curly slide and scares the teachers when she climbs some parts of the play structure.   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.  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.

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,  eee, ooo, shhh, mmm and ssss.   Some days she responds well to them, other days not so much.  The speech therapist uses different objects and games to make learning fun and Amelia likes the interaction.   Being the rascal that she is she often does things “wrong” on purpose, because she thinks it’s funny.   Her own vocalization is still very limited.  She basically makes one sound but uses it in a variety of different ways.   When she is asked to repeat a word she gets the number of syllables right almost every time.  This learning process is going at a very slow pace and we try not to get frustrated.   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. 

Working on ling sounds with DJ and Siena

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.   We have also taken the big step of letting Amelia ride home on the school bus.  Only two little girls are on this run (strapped into special safety harnesses) and it is only a 15 to 20 minute ride.  The morning run would take about an hour and a half and that is just not acceptable.

Amelia is constantly on the move and wants to be as independent as possible.  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!   She knows where everything goes and insists on putting it there.  She wants to dress herself and help with laundry and dishes and making the beds, well she tries!   She also can be very noisy and has learned to squeal with gusto just like her big sister.  Her favorite toys are Siena’s big doll house (which is a great learning tool) and books and puzzles of all types.  She has recently started enjoying watching TV and loves the Signing Times videos. 

    

Amelia and Siena watching Signing Times

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.    But she also sleeps very well, ten or more hours a night.   Naps are rare, but occasionally she still needs them.  After a day with Amelia, we usually need one too!

We hope this will give you some idea of where we are in Amelia's development.   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!

                                                   Have a very Happy Thanksgiving!

Rock-a-bye -Baby

September 15th, 2012  
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!
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!
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!