Our new typical Saturday

Today started out SO wonderfully.  I woke up to Jeslyn yelling for me.....REALLY yelling for me throught he baby monitor. "Mama, mama, mama" over and over.  I didn't go in right away because I love the sound of it.  After a few minutes, Larkin asked if she could go in to talk to Jeslyn.  I hear her say "Good morning, Jes" and then I hear Jeslyn say "SISSY!!!" 
I walked into the room and her face just lights up and again she yells "Mama!"  Then she points at her diaper and says "Ewww poopoo" and then to her changing table and says "dipey".  Seriously, how is this even possible for a child who only really started hearing 4 months ago?

All day long, she followed me around the house pointing at things and saying what they were. She goes to the refrigerator and I ask her what she wants and she says "Please milk".  When she's hungry she runs to her highchair and says "Eat".  She is in the mimicking phase and repeats everything.  I am just so optimistic about her future and being mainstreamed in school.

I love you my sweet girl!!!

So amazing! Jeslyn's new words....

Jeslyn is continuing to say more words.  She has now gone beyond learning her sounds in AV therapy to saying words.  To date, she says the following words spontaneously:

Hi
Bye bye
all gone
more
please
thank you
shoe
night night
shhhhhh
Cricket (calling our dog)
Joey (calling my mother-in-law's dog)
Larkin
momma
daddy
where'd he go?
Grandma
baby
ewwwwww (when I change her diaper)

All of this since her activation in June!!!!

Here is a video from last night.

She was recently featured in the Children's Hospital magazine.  She did such a great job and the story is really good.  Here is the link to that article.

http://ololchildrens.org/workfiles/WeeBeFALL_2012.pdf

Emotional evening for mommy

As the mother of two hearing impaired children, I cannot appropriately explain the feelings I have as I watch them grow from profoundly deaf to hearing.  I am absolutely amazed at how many new words Jeslyn says each week.  She has recently added "What's that",  "all gone", "uh oh", and "so big".  She also yells for her sister Karson, although she calls her Coco.  She jabbers and it's as though she's really telling us something. She adds hand gestures and so many new sounds and it really is precious.  Yes, I am a proud mom, but more importantly I know that ALL hearing impaired children who meet the qualifications for a cochlear implant have this potential.

I firmly believe that everyone has the right to decide what is best for their child, which is why I find it so difficult to understand that anyone would be upset with the decision we made to implant Peyton and Jeslyn.  Is there anything WRONG with being deaf? Absolutely not.  Is there anything wrong with giving a child the opportunity to hear? Absolutely not.  So let's all just get along and realize that the decisions I make for my child may not be the same decisions you make for yours and I will never belittle you for that.  However, you also need to realize that if you even begin to question me and the decisions I've made for my daughters I will make sure that you see exactly how successful and happy my children are.  Peyton was implanted at 4 and 8 years old and was mainstreamed since pre-school.  She has been a straight A student her entire life and she is now a 7th grader.  Jeslyn went from being 99% non-communicative to saying more words than a 1 year old within 2 months of having her implant turned on. 

I cannot wait to see what's in store for both of my girls.  Yes, there will be challenges as they grow and when they are grown and go out on their own, but we will cross those bridges when we get there.  For now, I will praise God for his goodness and the doctors, audiologists, and auditory verbal therapists that continue to perform miracles!

New video of Jeslyn talking

Here is Jeslyn showing off her verbal skills just 1 1/2 months after activation!

Houston, we have WORDS!!!!

We had Jeslyn's 2nd programming for her first implant today.  Everything went well and she is testing (in the booth with her implant) at 30 dB consistently.  Considering she was at 85-90 dB when we started this process, she is AMAZING!!! 

She is also saying several words/sounds!!  She now says: moo, meow, woof, quack, horse (clicks her tongue), baaaaa, tweet, milk, more, hi and bye!!!!

She knows pat-a-cake, wheels on the bus, and itsy bitsy spider!  I can't tell you how much I love watching her learn and grow every day.  Her little brain is like a sponge. 

The hospital is going to put her on the cover of their children's hospital magazine and I can't wait to see how the photos turn out. 

Healing nicely and on our way to activation day!

Jeslyn is back to her normal self.  The swelling has gone down considerably and she acts like nothing has happened.  Her steri-strips are still on and she isn't touching them very much at all.  Here is our sweet girl three days after surgery!

Activation is August 7th!

Surgery #2!!

The final surgery day was July 2nd.  We got to the hospital at 5am and she was whisked off by 7.  Surgery went perfectly and we were home by 10:30am.  She seemed to recover much quicker from the anesthesia this time too.  Within a couple hours of being home, she was climbing and running all over!

Hanging with daddy in pre-op

Snuggling with momma

Two hours after we got home

 One day post op

Two days post op

She did have swelling this time, which according to the surgeon was because he had already operated in this area.  She is so happy and acting like nothing happened.  She is such an amazing girl!!!

Our first attempt at AV therapy...she's a ROCK STAR!!

Today was our first auditory verbal therapy appointment and Jeslyn ROCKED it!!  She made every sound that Shelly worked on and was so engaged the entire time!

First audiogram after activation!

Jeslyn had her first programming session after her activation yesterday.  So, her audiologist set her processor with progressive maps meaning that we turn it up every single day until she is the last program highest volume.  She is on her second set of progressives now and did so well during programming that the audiologist decided to put her in the booth to test her. 

Not only did she hear the sounds, she also was able to determine which direction they were coming from the majority of the time.  Her hearing level went from 85-90 decibels to 30-40.  That is an AMAZING jump for just two weeks with an implant. 

I can't wait for her to get the second one!  That should make it perfect!

SO proud of my girl!!!

Me & my superstar!!

Knee pictures

 the first picture

 Two days later

Finally getting better after anti-virals

Staph infection might delay surgery #2

So, Jeslyn's been fighting some type of health issue ever since surgery.  The staph they found in her ear was staph warneri.  Apparently this is a pretty abnormal staph to find in that area.  Dr. Arriaga put her on 14 days of Augmentin.  That completely upset her stomach and caused a terrible yeast rash on her bottom.  

Four days after she finished the Augmentin, she got strep and was put on Clindamycin.  Clindamycin should have covered the strep as well as any residual staph infection. Again, the upset stomach and yeast rash was in full swing.


Four days after finishing the Clindamycin, the VERY TINY scrape on her knee started to get bigger and turn red.  She then woke up on Saturday with blister patches on her leg.  We ended up at Urgent Care and we were told she has a staph infection.  Apparently, it is a staph that is resistant to Clindamycin, because it grew in spite of her taking it. 

The urgent care doc prescribed Bactrim and we started that Saturday.  By today (Tuesday), she had a couple of new blisters which tells me the Bactrim is also not working.

We headed to her pediatrician today.  He decided that we should consult dermatology (he's not sure if it's a combination of bacterial and viral) and if they determined that it is a staph that is resistant, we would most likely be admitted to the hospital for IV antibiotics.  Otherwise, we will create a new plan of care. 


I am so frustrated for her.  My poor sweet pea has been on antibiotics for almost 8 weeks now.  I pray that the dermatologist can give us a clear answer and we can avoid the hospital and still have her second surgery on July 2nd!


I'll post pictures tomorrow, but it looks so bad!
 

How it all works

As a mom who has dealt with this for 8 years, I tend to assume that people  know the lingo associated with cochlear implants and that is simply not true.  So this post is to describe as best I can the terms I use in these posts.  

Implant - the internal device that is put underneath the skin and funneled through the cochlea.  

Processor - the external part that sits on the ear and has a coil that has a magnet on the end.  This magnet attaches to the internal implant magnet.

Remote - This is an AMAZING new technology that allows the parent/patient to control many settings and options by the touch of a button.  Especially helpful with kids, it has an alarm that tells me when Jeslyn takes her processor off, so that I can get it put back on!

Here is a wonderful picture that shows how it fits inside and out.

ACTIVATION DAY!!!! June 8, 2012

It's finally time for us to turn on the implant and see how she handles the new sound!

I have to say that her reaction was not a beautiful "A-HA" moment that you sometimes see on the internet.  She didn't like it at all and ripped the processor off every chance she got.  

                             (First reaction)


This is more activation, but in this one, she is much more determined to keep it off of her head, lol.

                            (A bit more dramatic displeasure)




However, by that evening, she wore the processor for around 1 1/2 hours while playing with her sisters and the dog.  


The next morning, I put the processor on during breakfast and she cried for about 10 seconds and then wore it all day without a problem.  She is an inspiration to me for sure!!!


The only time she takes it off is when she's tired and then she will not leave it on at all.  I have to say, this is going much more smoothly than I expected.

Healing nicely!

Jeslyn continued to improve every day after surgery.  Children are so amazingly resilient, I am in awe of her.  She was up running around the next morning and acting like nothing happened!

                                                   (Five days post-op - looks AMAZING!)

Surgery day, May 7th, 2012!

Surgery day finally arrived and we got to the hospital at 5 am.  Jeslyn was a trooper.  Because she was the first baby to have cochlear implants done at Our Lady of the Lake, the media crew was there to film the whole thing.

They took her back right at 7am and got started.  They did the right side first (her worse hearing ear).  Everything went very well and they started on the left side right away.  She was scheduled for bilateral implants, but unfortunately the surgeon, Dr. Moises Arriaga, found infection in her left ear, so we had to wait on that side.  He was able to get everything done that wouldn't be affected by the infection, so when we go back in July, it will be a much shorter procedure.  

                        (Just a short time after surgery, eating a graham cracker)

                                                            (The next morning breakfast with daddy!)

                                 (Big bandages off, all that's left is steri-strips)

The first step

Once we realized the extent of Jeslyn's loss, it made sense that she wasn't saying the things other kids her age were saying (like mama, baba, etc).  Our next step was to get hearing aids on her as soon as possible.  

Again, I have to say that we are so abundantly blessed to be surrounded by such caring, passionate audiologists who were there for us every step of the way.  We were enrolled in Early Steps (a program for children birth to age 3) and received loaner hearing aids within 2 weeks.  Jeslyn instantly loved the hearing aids and we realized just how much she had been missing.  She started saying "baba" and "mama" within a couple of weeks. 

Oh no, not again!!!

I am the hearing mother of four beautiful girls ranging in age from 13 years to 17 months.  Our oldest daughter, Peyton, was born hearing and suddenly lost her hearing at age 3. She had her first cochlear implant at age 4 and her second at age 8.  She is now an almost-13 year old main-streamed straight A 7th grader.  She has no speech delay and is flourishing!  Our second daughter, Karson, was born two years later and has normal hearing.  The third girl, Larkin, came along in 2008; she also has normal hearing.  Our little surprise, Jeslyn, was born in December of 2010.  She passed her newborn hearing screen, but then things began to change...

Because of our oldest daughter, I have been vigilant in watching the other three to make sure that if a problem exists, I would catch it right away.  Jeslyn is a happy, active little girl.  She plays hard, and for that reason, I guess I made the excuse that she was really focused or distracted by her toys. Although, one Saturday morning, Jeslyn woke up and I went in her room to get her.  I walked in and she was lying with her back to the door.  I said, "Good morning Jeslyn", no response.  I said it again, and still nothing.  I went to the window and opened the curtain and she instantly turned and stood up.  That is when I became worried that we were in for another journey of hearing loss. 

Luckily, God had placed us right where we needed to be.  I happen to manage a neurotologist practice.  I explained to the audiologist what I was seeing with Jeslyn and she said to bring her in right away.  The next day, she had her first test and the results were not good.  Her audiogram placed her in the moderate to profound hearing loss range.  

The next step was a sedated ABR, CT scan and MRI.  Because she is so young, we hoped that the results would be better when we took out the environmental factors.  Unfortunately, the results were worse than better.

Sadly, we realized that this journey was ours to take yet again.