Joyful Holidays

December 12th, 2013

11.11

Was it only a month ago that Miah had her piano recital?  I guess it’s been a busy month!  We are so proud of this girl.  She’s been playing piano for less than a year, and is just flying through the levels.  It is a pleasure to listen to her practice each morning, and now Ami is showing an interest as well.

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Two recitals in two days!  We are thankful for an awesome teacher.  Next week they’ll be playing for some Retirement Centers.  Yesterday their small choir sang at a Retirement Home also.  I’m so glad they love music, and are willing to share it with others.

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School has been fun, too.  Here Ami is writing with a homemade quill pen dipped in homemade berry ink, just like the Patriots once did!

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Ami had her annual visit with the cleft team at Children’s Hospital.  The mountain passes were clear this trip, but you can see it was still a long drive!  Her surgeon continues to be happy with her progress, speech, etc.  She will need a surgery in the spring to patch her perforated eardrum, though.  Thankfully her left eardrum healed, and she is hearing well with that ear.

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The girls look forward each week to art class and choir practice with some good friends.  The turkeys they worked on so diligently did not survive till Thanksgiving.

 11.22

I see a couple very proud cousins!

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Wish we could see you more often, Benson!

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Somebody made another contribution to L*cks of Love!  And she is SO happy to be rid of all the tangles!

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We had to go Christmas Tree hunting to find some snow.  Good thing Ami reminded Dad to throw in the sled!

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This was before our single digit temperatures, but the campfire still felt good!

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The Christmas Tree skirt is getting shorter…

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And shorter!

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We finally got some snow at our elevation.

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It wasn’t much, but it still brings joy!

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Speaking of joy, Ry’elle certainly brings joy to Miah and Ami when they see her each week.  I think they bring her joy, too.

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It must be Christmas time!  Cooks in the kitchen!

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Saying Hi to Lily the Camel.

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And visiting our local village of Bethlehem.  We are enjoying the Season!

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Clinic Day

January 13th, 2013

This past week we took our annual drive to Children’s Hospital for Ami’s cleft team appointments.  Though we gave ourselves more than an hour extra travel time, we finally made it just 5 minutes late!  You can see why ↓.  After driving with very poor visibility over the first mountain pass, going 23 mph behind 3 snowplows over part of the second pass felt much safer!

We were thankful to make it home safely that evening after waiting for avalanche related closures to open back up on both this and the other route home!

This time around, Ami didn’t meet with her surgeon, just ENT, SLP, and audiology.

This, of course, requires wait time, but they actually do a great job scheduling the appointments one right after another.

Ami chose a book from the prize box after going through a minor “surgical procedure.”  Her T-tubes ↓ had worked themselves out of her eardrums, and were residing in her ear canals along with a fair amount of wax.  She has had them for about two years.  The ENT was hoping they would stay in another year or two, as her anatomy is still prone to ear infections.  Instead, she now has a small hole (left ear) and a large hole (right ear) in each eardrum which will continue to act as tubes.  They may or may not close on their own over time.

After that procedure, Ami passed her speech assessment with flying colors!  She has worked so diligently these past two years, and we are all thankful for her amazing progress.  The hearing testing in Audiology did not give us such great results, but we were comforted to learn that her minor hearing loss is temporary (while her eardrums are perforated), and it is in the low frequencies that are not crucial to speech development.  We will most likely continue to hear her frequent, “Huh?”  Our laugh for the day was when Ami was in the sound-proof room being fitted with special ear pieces and wires for the testing.  Her comment to the assistant:  ”I don’t want nobody to see me like this!”

Can You Hear Me?

August 24th, 2012

I found out some information today that I thought I’d share with those who may be interested.  Ami had tubes placed in her ears when she had palate surgery, due to ear infections and minor hearing loss.  We had heard that this is common for cleft affected children because the eustachian tubes may be positioned differently, allowing fluid buildup.  I understood that by placing tubes, the fluid could now drain and alleviate pain and pressure, and that it should help prevent ear infections.  But no one told me how this works.  This site gives more detailed information on what is happening in the middle ear.

Several months ago Ami had an ear infection so we visited her pediatrician to get it taken care of, and were told that her tubes were doing what they were meant to do, draining the fluid.  We also saw that she had a lot of buildup of wax and crusty dried fluid.  Not wanting to disturb the tubes, her pediatrician wouldn’t remove it.  After realizing that her hearing was being compromised, we got a referral to a local ENT, and in a relatively simple procedure he removed LOTS and LOTS of wax!  The bill for the “surgery” was not so simple.  Six months prior to this, at her annual check up with the CL/CP team at Children’s Hospital, she had also had a substantial amount of wax removed by the ENT.  (Her hearing test indicated that her hearing was now in the normal range.)

Now three months go by and we notice Ami does not seem to be hearing so well.  Yep, we can see that wax building up again.  (For some reason, ear wax in Asians tends to be dry and sticks to the ear canal, so buildup isn’t easy to remove.)  We’re thinking, okay, I guess wax removal is going to be a quarterly event for this one!  Because of the tubes, we cannot give her ear drops to help with the process.  Well, after talking to an audiologist friend, we found out that their office will remove ear wax for a fraction of the cost.  Basically the same procedure, but not considered a surgery.

Today Ami had her appointment.  She even got to watch the process on the computer screen.  In talking with the audiologist, he said that the tubes do more than drain fluid.  They work as a substitute eustachian tube, allowing air into the middle ear also.  In layman terms, he explained that the tissues in the middle ear have moisture in them, and if the eustachian tube closes up due to a cold, etc, then the tissues will release fluid, like ringing out a sponge would do.  By allowing airflow, the tubes can prevent this fluid from forming in the ears.  I may not have gotten all my facts straight, but I thought it was quite interesting and helpful information.  So ears are cleaned out, Ami is feeling fine, and she no longer has an excuse for not hearing us!

Growing Up

September 17th, 2011

These photos are a little old, but I haven’t taken the time to do much blogging lately, so it shouldn’t matter, right?

As Ami is about to grow out of the Early Intervention (0-3 yr.) program, she had a speech evaluation this week to determine if she would qualify for services through the school system.  Let me just tell you, that she is a talker!  She has amazed us with her progress in speech over the past 6 months.

We also give credit to her wonderful SLP (Speech Therapist) who works with her each week, and gives us specific areas to work with her on, as well.  After her palate repair, we started with blowing bubbles, blowing through a straw, sucking through a straw, blowing a whistle.  Things we take for granted, that Ami was unable to do without closure between her oral and nasal cavities.

The first sounds we worked on were “B” and “P”, the voiced and unvoiced “plosives”, which require air to come out of the mouth without escaping through the nose.  (Once her palate was repaired and healed, Ami has had to learn to use new muscles to close off her throat when speaking.  Thankfully she didn’t develop any fistulas, and thankfully her soft palate is long enough [reaches far enough back in her throat], that she can make that closure.  Otherwise, air would escape [and sometimes still does] out the nose when speaking, making it difficult to form many sounds.)

As she practiced and mastered those sounds, we worked on the “D” and “T”, also voiced and unvoiced, just requiring a different mouth formation.  Ami is such a little mimic, she would be learning the new sounds consistently within one or two weeks.

Our next sounds were the “G” and “K”.  These were a little trickier, but it was gratifying to hear the progress from sometimes, to often, to always.  As a teacher, (and someone who enjoyed taking linguistics classes), I find it fascinating to work with Ami’s SLP and learn some of her “tricks-of-the-trade”.

Other sounds we have worked on are “F” and “S”.  We are just now working on the voiced equivalents, “V” and “Z”, as well as the the many “S” blends.

Ami’s pronunciation and vocabulary are pretty good for an almost three-year-old, especially one who has a CL/CP diagnosis.  (And especially considering that she has only been hearing English spoken for one year).  We were all curious.  Would she even qualify for speech services?  When giving one-word responses to the SLP evaluating her?  No.  When being observed in play and hearing spontaneous speech, coupled with her CL/CP diagnosis?  Yes.  We are happy.  Ami will continue receiving speech services, and while she is still young be given every opportunity to speak well.  She still has areas to improve, and I know that it will be easier to work on those areas now rather than later.  We are just so proud of her persistence and how far she has come.

Ami Self?

April 8th, 2011

I guess I should give a little follow-up on Ami now that she’s nearly two months post-op.  She has been back to normal activity, feeding, sleeping, etc. since six weeks after surgery, which has been about two weeks now.  And she is one happy rambunctious girl, no longer subdued.  Before then, we had stopped with the arm restraints at night, and WOW did that make a difference.  She (and us) have been sleeping so much better at night.  At the six-week mark, we started letting her feed herself, and my was she pleased!  She started asking, “Ami self?” every time we sat down to eat, meaning, ‘may I now feed myself?’  At first I didn’t understand, her “self”, as she doesn’t have a good “s” sound yet, but Miah kept telling me what she was asking.  She still says “Ami self?” whenever we eat or have snack, then she gives a big grin to show her pleasure.  Yet if Miah or anyone else hands her something to eat, she looks at me for approval before putting it in her mouth.

This photo is already a week old, but can you see the new tooth coming through right by the cleft (there are still stitches right next to it)?  No wonder her hands were going in her mouth and she was wanting to chew on everything once the no-no’s came off!  We thought she was done, for now, with 19 teeth, but she’s working on number 20!  It’s very common for kids with clefts to have extra teeth, missing teeth (which we originally supposed was Ami’s case), and teeth erupting in the wrong places.  We’ll monitor this one, and see what the Cleft team and dentist say when we meet with them in a couple months.

In speech Ami is working on B’s and P’s, D’s and T’s.  These sounds are considered “plosives”.  You make them with a force of air.  Prior to her surgery, these were not sounds Ami was capable of because, with an open palate, the air would just escape out her nose.  We are also practicing blowing (bubbles, straw, recorder) so she can learn to use the muscles in her newly formed soft palate to close off her throat so the air will come out her mouth and not escape out her nose that way.  We are so thankful Ami was able to have these surgeries before she developed any compensatory speech habits that would have been hard to break.  She definitely loves to talk!

We had another 4+ mile walk on the riverfront again this week with Aunties Tisha and Nancy.  Miah and Ami had a great time throwing sticks in the water down at the river.  There’s nothing like dirt and water to entertain kids.  Or adults.