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SJ’s 2nd Year of Preschool

I can’t believe this will be SJ’s last year of preschool. I never  necessarily even planned for my children to even go to preschool, but as you know SJ case is a little different. The idea that a year from now she will be starting kindergarten really shocks me! I suppose I am getting ahead of myself. One year at a time. I am so very anxious (in a good way) to see what this year will hold for her.

You may have noticed I have a page on my blog now that is dedicated strictly to SJ’s story and her current progress. I don’t have any recent updates because I feel like we have been at a stand still over the summer. I always keep a log of new words and phrases that I notice SJ saying and the last time I did an entry was the end of June. Maybe some of it’s because I have been too busy to notice, or maybe it’s because she was on vacation and out of school so she is just plateauing. Or perhaps this would be a slower time anyway. These burst of vocabulary breakthroughs do tend to happen in waves. I’ll be glad to have her back in school full time though, and not because I want to be away from her because I don’t. 

It’s just that I can tell a difference in her progress when 
they are purposefully working towards speech compared to the incidental learning that usually happens at home.




She has two new teachers this year. One is for academics the other is speech. I hate change and having school age children has forced me to adapt to new people on a regular basis. Bleh! However, I LOVED her therapist in Louisville, I loved her teacher in the toddler program, and her therapist last year, and I am sure these two lovely ladies that she is currently paired with will be just as nice of a fit. I already have a good feeling about it since SJ received a card addressed to her personally with a hand written note inside. It told SJ to her to let her mom and dad know that she will be in the classroom on a certain day and time and to come by to say hi. In other words, meet the teacher.

Last year’s teacher and this summers therapists. She will forever have a special place in our hearts!

I do have one little prayer request which isn’t really hearing or CI related, but it kind of is. SJ has always had huge tonsils. She snores like a 50 year old man and she has since she was a one year old. Seriously. However, we have had many experienced Doctors and Pediatricians take note of this fact without showing any concern. My mom brings it up a couple times a year because she just wants to make sure SJ is safe and her airway passages are clear. Then SJ’s team of therapists brought it up at our end of their meeting and told me to talk to her ENT about it at our next appointment so last week when I saw her Otolaryngologist I did just that.

He said that her tonsils are a 3+, and that is on a scale that ranges up to 4. So they are in fact big, but without frequent strep throat or sleep apnea (neither of which she deals with) there is no reason to remove them. In fact there is some kind of a cautery tool that they would normally use for surgery that cannot be used on SJ because of her implants. An alternative procedure would affect the coronary bleeding which is an added risk to consider when weighing how valuable this surgery would be to her. Once again it doesn’t mean that they are ruling it out and don’t want to do the surgery, but he is going to reevaluate in a year and see if she has grown into them at all. He said sometimes these things correct themselves with time. I don’t know why there always has to be another hand, but on the other hand he said there are advantages to doing the surgery while the child is still young. It’s easier on them, so we don’t want to put it off if it is inevitable.

Sheesh. Don’t quote me on all the details of that because I wrote down what the Doctor said, but I don’t have the paper in front of me. I just remember him saying to not worry about her for now because there is space in her mouth, so she is fine. It would be my heart’s desire that she would not have to go through another surgery if we can avoid it. I pray that this situation will be cleared up without any medical intervention. In the grand scheme of things it is not an earth shattering concern and I do believe God’s hand has her covered head to toe.

So that’s what is happening with the girlie. She has had a wonderful summer.

 I am sure she is going to be bummed to realize it’s over, but happy to be reunited with her friends. One week to go!

By |2015-05-18T05:08:53+00:00August 12, 2014|Hearing Loss, My Life, Special Needs, Uncategorized|1 Comment
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More Than Words Can Say

*This was originally written over a year ago. Sometimes I just need to write even if I keep it to myself, but today, on the 2nd anniversary of her diagnosis, I am ready to share.*

In the world of hearing loss I feel like the label “Late Identified” is a big red stamp across my daughter’s forehead. These days most deaf children are diagnosed through a brief newborn hearing screening before they even leave the hospital. Since SJ wasn’t born at the hospital we never had any testing done until she was over two years old. 

SJ at two years old, a month after she was diagnosed.

SJ’s birth was perfect. It was hands down one of the most amazing, beautiful, and spiritual moments of my life, but if I could change the past then I would have had a screening test done after the home birth.


The first seconds of SJ’s life!

 As with any treatment plan, like with cancer or autism, the earlier you can diagnose and intervene, the better. There are so many benefits to getting started at a young age when it comes to language, and we lost two years of valuable time. However, having those years of not knowing did have some benefits. 

When I blogged for the first time about SJ’s hearing, Amanda (from Oh Amanda) left me a link to a woman she called her hero. That woman was Rachel Coleman of Signing Time. I read her story, got several of her videos, and she soon became my hero as well. Her daughter Leah was also late identified because the hospital had taken a break from newborn screenings for a brief time before they became mandatory and that was when Leah was born. Here is what Rachel said about her daughter being late identified.

 “Was it meant to be? I don’t know. I wonder how over-protective and lame I would have been if they had handed me my newborn baby and said, by the way she’s profoundly deaf. Looking back I can see the blessing it was that we got to know Leah for her first year with the complete expectation that she could do anything, she was limitless. When we did hear her diagnosis “severe to profound hearing impairment” when she was 14 months old, we mourned. We cried. We felt silly. We couldn’t believe it. We thought there was a mistake. We hoped it would go away. We felt all of that and more at once! Finally we looked at Leah and she was still her happy beautiful self. And we recognized that for Leah nothing had changed. Nothing was wrong.”

Boy do I relate to that! When we first came to SJ’s school, one of the advisers had commended me on how well I’ve done at communicating with SJ despite her hearing loss. She told me that many parents have a hard time just talking with their deaf children and unknowingly tend to turn their conversation toward someone that is listening to them. I’d like to take credit for being so loving, but I didn’t know she was deaf.

 Another therapist was astounded by SJ’s cognitive abilities and said she had never worked with a deaf child potty trained at such a young age. I’d like to take credit for that too, but once again I didn’t realize I was potty training a deaf child (and besides that she initiated it). For over two years I treated her like any other baby/toddler. We didn’t fret. We weren’t trying to protect her. We weren’t taking action. We just loved her as she was, and in the mean time she loved us back and proved to be a very capable, thriving, joyous little lady. 

I know now more than ever how vital communication and language is. However, in those years we “lost” by not starting therapy or using hearing devices we also gained a lot and I learned a valuable lesson. She understood me. She may not have understood my words, but our love transcended all of that. Our hearts spoke to one another. I have always told my kids that I love them more than words can say and for SJ I’ve lived that truth. 

By |2015-05-18T05:19:43+00:00May 5, 2014|Hearing Loss, Motherhood, My Life, Special Needs, Uncategorized|10 Comments
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SJ’s Latest Evaluation

This week was parent teacher conferences at SJ’s school. I wanted to do something special for her teacher’s because SJ goes to the best school ever with the greatest staff in the world.

Exaggerate much?

Well, to me it is all of that, and it’s been a God send for SJ. The least I could do is look up a simple thank you on Pinterest. I liked this printable from Tammy Mitchell Designs.

Instead of having SJ (Sedona) sign them I scanned her name and added it to the printable. That was her teachers favorite part, getting to have a keepsake of her name which she had JUST learned to spell.

In fact, out of nowhere she has been blowing me away with her handwriting. She can’t read, or sound things out. She doesn’t know ANY of the alphabet. So, considering all that, it is amazing that she can not only spell her name by heart (which is a long one), but she also knows several letters from her friends and family’s names. Just one example is when she saw the word Happy and thought it said “Hailey” which is a classmate. Then she had written some names on a piece of paper to which she pointed from bottom to top saying “Sedona, Zion, Ezra, Mommy”

 Some of the letters she did get right, and I don’t think it was just a coincidence. She is starting to make the connection. She also very suddenly went from scribbling blobs to drawing houses, rainbows, buildings and people.

And here is one of daddy playing guitar.

There are other areas she is falling a little behind in. I don’t want to focus on that because her team assured me and reassured me that she is doing wonderfully and it’s nothing to be alarmed about. I am going to work on making sure she keeps her implants on ALL the time at home and the school is going to pull her out of nap next year, since she doesn’t nap anyway, so that she can have more tutoring. I’m sure she will be fine and we can all pray and believe that she catches up in the area of sentences and can continue to move forward in order to really reach her fullest potential!

Lastly, here is a video I put together for her teachers to see the progression she has made since coming to the school a year ago. If you’ve watched any of the videos on my blog you’ve probably seen most of these and can skip this, but it’s still interesting to see 18 months unfold in 6 minutes. The first clip is with hearing aids and she can’t speak at all, she is mostly just looking at the therapist and trying to mimicking through the visuals. Nearly 6 months later she is implanted and activated, and she started to hear words and repeat them. This potato head video was an enormous breakthrough for Sedona. The third clip is summer school and she is still mostly repeating words with prompting, but she recognizes several vocabulary words. Then fast forward to this year where she can understand a TON more and is saying a few simple sentences and communicating by answering questions. The last clip is one I took at home of her practices some of her vocab. She knows 300 words now (give or take) and is has even started to sing for the first time.

That’s what’s happening with SJ. I want to do a blog post about Z’s school next. I was a part of a Common Core webinar yesterday and it’s been confusing and a little scary, but nevertheless I love his school. I will elaborate on all that later. I hope everyone has a really GOOD Friday!

By |2015-05-18T05:20:09+00:00April 17, 2014|Hearing Loss, Uncategorized|3 Comments
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I Want Apple Juice (and other glorious statements)

I feel like SJ’s been tattling on Z since birth. One time, before she could ever talk at all, she came running into my room crying. Z came following right behind her yelling “she’s lying”. Hmmm. That sounds suspicious. However, she has come a long way in the past 6 months and the progression is evident in the way she and Z bicker. In October she went from just pointing at Z to actually being able to say his name.

It really was a major milestone. Then in December she started piecing two words together and saying “Z hit!” (or Z push, Z hurt, Z boo boo, etc.) Her latest achievement is the 3 word combination such as “Z hit me”. I hate to be so enthusiastic about sibling rivalry, but it really is exciting to watch her build her communication skills!

There are other things I am sure would annoy most parents, but I am just thrilled to hear her talk. For example the other night we had cut off juice for the day and told her she could have water. She didn’t like that and she just kept whining JUUUUUUICE. Then when she was given a cup of water she said “No. I want apple juice.” Perfectly clear. How am I supposed to respond to that? I didn’t give in, but I did smile and maybe clap a little.

She has said several other sentences recently like

“Mom, I hear phone”
“I hear it”
“I want pudding”
“I will do it”
“Daddy sit down.”
“Baby Ezie’s turn”

She can also count to 5 and knows several colors.

She sang 5 little monkeys along with her class for a school presentation. Here is a video of Z and SJ practicing.

Last week she was in The Very Hungry Caterpillar play and said her line perfectly, which was “I eat hotdog”, without any cue.

 Way to go SJ!

She is making great strides. Even her bedtime routine has made a complete 180 degree turn since I last complained mentioned it. It’s hard for me to capture her talking on video. I always have my hands full, and you know how kids are, they stop the moment the camera  is ready. However, the webcam helps some because she seems to respond well to the computer. That’s how the video above was recorded (Z changed the background to fish), and this one is her showing some of her vocabulary word pictures. In it she says over 20 words. I know she is very difficult to understand. There are a lot of sounds she can’t make yet, like the “C” sound which is why car sounds like “har”. She understands so much though and she is able to articulate more and more each day.

That’s just a small portion of a ten minute video! That girl is on fire. It was this time a year ago that she said her first word and now she knows a couple hundred words. For 6 years Z was the only one talking and it won’t be long now that I will have three chatter boxes on my hands. Bring it on.

Captions for the video:
Bird, cow, dog, rabbit, hand, ear, feet, eye, horse (twice in a row), bug, strawberry, hamburger, kitty cat, bike, cow (which she calls horse at first), sink, hotdog, crackers, pizza, chair, cup, bed, spoon knife, fork, boat, phone.”

By |2015-05-18T05:20:42+00:00March 25, 2014|Hearing Loss, Uncategorized|2 Comments
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