Wednesday, May 7, 2014

Our big girl

May, 2014
It’s been such a long time since I wrote a journal entry I hardly know where to start. 
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? 

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.

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.   

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. 

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. 

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.

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?

Sunday, July 14, 2013


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.

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.

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.

Monday, March 11, 2013

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!


Monday, November 19, 2012

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!