Play Ball!!

This summer we decided it was a good time to sign Kemper up for T-Ball. He's five, a perfect age to start right? Apparently I didn't get the memo that you're supposed to sign your kid up for sports while still in utero. Turns out K was the only kid on the team that had not previously played before. Most of the others had been playing for at least two years! This was going to be his first time in a group sport activity, so naturally we were a little nervous.  Kemper has always been a homebody, keep to himself kinda kid so we weren't exactly sure how it would go. Luckily it all turned out for the best!

We took him to the park down the street to test out his batting skills. He was a natural with a really good swing!! Nothing like Daddy/son moments to melt your heart.

Baby sister loved getting outside to watch her brother practice. We had to give her her own ball because she insisted on practicing herself. Softball may be in her future, she has a great arm!

We decided to have Kemper try T-ball first, mainly because it is a non contact sport (for the most part) When you have cochlear implants it's just something you think about. I know other CI recipients have done/do contact sports, but this being our first time doing any type of sports we didn't want the extra worry of him hitting his head. Although, in the planning process it didn't even cross our minds that the children are required to wear batting helmets while at bat. Cochlear implants and helmets really don't make the best combination. I think we tried every helmet out there to find one that would fit comfortably over his CI's without knocking them off. We originally tried the Adidas Incite batting helmet . It was a helmet that you could put on and then turn a dial that would tighten the helmet to your head for a more custom fit. We loved it and the idea. The only problem we had was that K has a tiny pea head like his mother and we could not get the helmet tight enough. I was just loose enough to knock his coils off his head when he moved. Total bummer. Next we moved onto a regular Rawlings T-ball Helmet   We were able to get a tighter fit with this one but his processors and coils did not have enough room. To help with this my husband cut off a small portion of the 1st foam layer of padding around his ear and where the coils would go. While I don't recommend removing padding from a safety helmet, I was okay with this because very little was removed and  this is T-ball not the major leagues. I think we will be okay!!

PIRATES!!
Kemper still loves anything that has to do with Pirates so I found it so fitting that his team name was the Pirates.
My skinny little thing, I think his uniform wore him.

Kemper had a great coach this season. He challenged the boys and was very patient them. He also made them work as a team and encourage each other. I loved that when a player would make it to home plate all the boys in the dugout would yell like a pirate ARRRRGGGGHHH!!

 A few games into the season Kemper's coach was looking for a little help so my husband stepped in as an assistant coach. K loved having his Dad on the field and having someone there to help him with his batting helmet.

I had a crush on the assistant coach.

This is what 5year old T-ball looks like.
I love Kemper's clueless facial expression, the coaches all pointing in different directions, kids playing in the dirt... It's not the easiest sport to teach or learn for sure!!

Pirates!!
So thankful for such a great group of boys and coaches.

My sister made Kendall her own Pirate uniform. It had a Pirate skull on her shorts and a number 7 on the back of her shirt. She was an adorable little cheerleader on the sidelines. She would clap and get so excited when she would see her brother at bat.

 His first season of T-ball was a great learning time for him. He made a lot of progress with his catching, fielding, and hitting. Kemper was so proud of the patch he earned for making a great catch during a game.

I never thought I say this but I kinda miss our 8am Saturday morning games.
Good times, Great memories!!!

Cochlear Implant Activation!!

Here we are again!
 

Kendall had her cochlear implant activation on February 27th, two weeks after her surgery .

We made it a family affair and brought her brother Kemper with us. He was so excited for Kendall to  "get her ears turned on."

   Her audiologist started the activation with the introduction of beeps and tones from the computer into her implants.  The initial sounds didn't phase her but as they continued she would stop playing with her toys and look up at me like "what the heck was that?" 

When her audiologist first transitioned over to speech sounds Kendall got a little nervous and began to fuss. The sounds were quickly turned off and she continued to play. The second time speech was introduced she didn't cry or fuss but she quickly turned to me for support. The third time she hardly took notice. She just took a quick pause from playing to look at me in wonder then she would start doing a little bounce in my lap each time she heard a noise.

We had a special guest follow along with us on activation day. Our local news channel had contacted us when Kendall was having her surgery and asked if they could do a story on her. They also wanted to do an update on Kemper. They had done a story (can't find video version) on him back in 2010 when he was implanted. It was fun but so nerve wrecking. They take so many shots and ask so many questions, so you never know what they will use. Plus trying to wrangle two kids while talking on camera is near impossible. Two versions of the interview were shown on the news that day, thankfully the one with me talking showed up late night. I thought the prime time version that I have linked below was much better. My husband did the talking!;)


North Texas Toddler Hears for the First Time « CBS Dallas / Fort Worth

Kemper and Kendall's audiologist takes a picture of  all her cochlear implant recipients on their activation day. K found his as well as the spot left open for his baby sister.

With our favorite audiologist Leslie.


It took Kendall a good two/three weeks before she was fully comfortable and understanding sounds. We had to make a several trips back to the audiologist to make some tweaks to her C.I.s during those first few weeks.  Her audiologist originally give us four programs, each one gradually increasing her access to sound. Every couple of days and we were supposed to go to the next program as tolerated. Only thing is we could never get to program 2 before she started blinking at sounds requiring us to keep her volumes and sensitivity settings really low. Each time we would adjust her programs she would be fine for a day or two but then she would start blinking to sounds, alerting us that her program was too loud. It was like as her brain adjusted to hearing sounds it was requiring less and less stimulus to get a reaction. This was quite the opposite for her brother.When he was activated we had to make multiple trips back to increase his settings.

Kendall has taken to hearing like a fish to water. She loves to hear. We thankfully haven had any issues with her taking  her C.I.'s off, except while in the car. Although everything tends to come off while shes in the car bows, shoes, socks...;)




Here are a few videos of Kendall in her first 2months of hearing.

March 17 (2wks 4 days hearing)
responding to her name and understanding "hi"

March 19 (3 weeks hearing)
A friend posted a video of her baby making raspberry noises with her mouth, Kendall didn't even need to see it in order to imitate it!

March 26 ( 1 mo hearing)
Kendall responding to her name and acknowledging that I am speaking to her.

April 21st (almost 2 mo hearing)
Trying to shake her egg but shakes her booty instead!
I did not give her any visual cues, she understands the word shake!

Cochlear Implant surgery - check!

Well the time has finally come and gone. Kendall had her cochlear implant surgery on February 12th . (She's kept us so busy since, I'm just getting around to blogging about it!)
Thankfully we had no issues with insurance and the surgery was approved very quickly. Although for a while we were not sure if it was going to happen, even right up to the day before. Kendall had been fighting a virus that left her so congested and snotty for over 4 weeks. We fully expected her surgeon to say no to the surgery once he heard her nasty cough. We were shocked when he said that he was comfortable with continuing with the surgery. He said she's been fever free, her lungs and ears were clear,  and that the virus was most likely on the very tail end. We were just dealing with drainage that could take weeks or more to dry up. It was now or risk her really catching something down he road.

 On a side note, I don't think that I mentioned this before but originally we were were offered the option of getting Kendall implanted at 6 months old. The catch was that due to her age and size she would only be implanted on one side. She would then have to come back in a couple of months to do the other side. I wasn't comfortable with having her go under anesthesia twice so we opted to wait and have it done bilaterally at 8 months.

We were up bight and early. We had to be at the hospital by 5am to prep for her surgery that was scheduled for 7 am.

 I was worried she would have fit not being able to eat prior to surgery, but thankfully she wasn't cranky. All the medical equipment and my iPhone kept her distracted.

The surgery took a little over four hours. We were updated on Kendall's status frequently by the OR nurse with this pager. The time actually seemed to fly by and before we knew it our surgeon was out showing us pictures and telling us it was a success.

Seeing her for the first time in the recovery room after surgery. It was a total flashback seeing Kendall all bandaged up like her brother. They even had the same hospital gowns. I can't tell you how may times we said to each other  "Can you believe we are doing this again?"

Once we got back to her hospital room Kendall was able to take a good three hour nap. We had the hospital staff bring us an adult hospital bed and we took turns holding her in our arms. Just like her brother, she wanted nothing to do with sleeping in a crib after surgery. They both preferred to be in an upright or inclined position. The small dose of morphine also helped get us through a rough spot after she woke up from her nap.
  Speaking of morphine, Kendall had a morphine dose ordered for every hour if she need it after surgery. She had one dose while she was in recovery and didn't need another until about five hours after that. We were grateful that Kendall didn't require pain medication that often because our nurse was pain in the butt about giving it to her. She kept telling us that a just a dose of Tylenol should take care of the pain as Kendall screamed in my arms. She also said that we should only give her Tylenol because she won't have morphine tomorrow when she went home. Really? I thought, she's in acute pain, she just had surgery on both sides of her head, and it's been five hours since she had anything! The doctor prescribed it for after surgery for a reason, otherwise I would have just taken her home and given her Tylenol myself. Grrrr.  It was all I could do to not go all momma bear on her and pull the I'm a freaking pediatric ICU nurse card on her. Thankfully my husband was there to calmly but sternly state "my wife would like her to have morphine and I need you to get it." She got the hint. ;)

Can you believe this was our hospital room? or shall I say rooms? I guess the census was low because they gave us a VIP room. It had a another room attached that had a pull out bed, refrigerator, microwave, and TV for the guest staying with the patient. Kemper and his cousin had a blast turning it into their own pad while visiting.

We had a pretty smooth night. Kendall was up about every 3-4 hours to feed and get an occasional scheduled pain med, but otherwise she was totally fine. I snuggled up with her in bed until around five am.  I could no longer stand the crick in my neck from not being able to move in fear of waking her. Daddy took over and I got to try out the "guest" room. The next morning Kendall woke up happy as a clam. It's amazing how resilient kids can be. She just wanted to play and play.

To minimize swelling Kendall had small drains placed behind her ears during surgery to drain the extra fluid. They were easily removed the next morning by her surgeon. She still had some drainage afterwards that required us to change out her dressings every once in a while. You would think I being the nurse I would change them out but nope Daddy insisted on doing it.

 
  Kendall had her surgery on a Wednesday morning and we were home by Friday afternoon. It just all went by so fast and we couldn't have asked for it to have gone any better. (well maybe the morphine part.)   K even enjoyed his time away from us. He had a blast getting spoiled by my parents.

Valentines Day was two days after surgery and none of her cute Valentines outfits would fit over her head, so we improvised!!

We took Kendall's ear muffs, Princess Leia buns, water polo headgear, ear protectors off Sunday night. They had told us to take them off Monday morning but she had such a hard time sleeping with them we decided to take them off a night early. (we did this with K too) Sure enough she slept through the night once we did.

Her swelling was much less than her brothers, most of it was on the top portion of her head where the implants were and around the temples. Kinda made her head look like an upside down triangle.

Her ears are really swollen here, but I thought her incisions looked great. Kemper's incisions looked very similar and nowadays you have to really look hard in order to see them.

           
My sweet bionic babies!!

K back in 2010 at 9 months                                     Kendall 2014 at 8 months


Up Next:
ACTIVATION!!!!
  

Hearing birthday #4

February 11th we celebrated Kemper's 4th hearing birthday!

We like to take this day every year to thank our family, friends, doctors, therapists, teachers, and all those that have been with us throughout this journey. It really does take a village. When K was first activated I would watch tons of YouTube videos of other children with cochlear implants and I was amazed to see them listening and speaking so well. It was so hard to imagine that K would be doing the same one day. I'm so proud of how far he has come.

 K's hearing birthday celebration started off at school where his awesome teacher made him a happy hearing birthday hat to wear at school. He just loved it and even wore it the rest of the day.

 At home I can't get this boy to be quiet. He's a talker. He has no problem telling us what he likes and doesn't like, but put a camera in from of him and ask him a few little questions and he turns into a silly ham that can't remember anything. Here's my attempt at an interview with him.

Later that night we did our annual family celebration over at my parents house. Kemper had the privilege once again of deciding on the menu:  pizza and cupcakes. Surprised?
 My older sister can never resist getting K a present. This year she bought him the soundtrack to the movie Frozen. If you don't know the movie Frozen A. You must not have small children. B. You live under a rock.
 We Kemper has now memorized every song on this album.

Pretty much everyday after school K goes to his playroom upstairs and plays his CD's. We bought him a karaoke machine for Christmas so he loves to sing with the microphone. Its amazing how much he loves music. He's always asking for some type of instrument or CD. How ironic is that?!!
Like I said before Kemper is not a huge fan of being filmed so he would never agree to me video taping him singing. I had to get a little sneaky and hide the camera behind his toys to get this shot of him singing "Let it Go" from the movie Frozen. Keep watching and you can see him really get into it.

Thank you Cochlear Implants for our happy boy!!

Sedated ABR/ MRI

When Kendall was 6 months old she had her last hearing tests to verify her degree of hearing loss. During these tests they looked at her brain activity to see any reaction to varying noise frequencies. To make sure they would get accurate results and not get any interference from her moving they sedated her. The entire process took about two hours total and she tolerated the sedation well. The results were as expected- profound bilateral hearing loss.

The last step in our cochlear implant candidacy process was to get an MRI. They needed to make sure that her cochleas and auditory nerves were fully developed. We were not too nervous about getting these results since we already knew that a flawed Connexin 26 gene was the cause of her hearing loss, but we still had to rule out any other causes.

She was such a champ and had no issues at all. The only problem we had was trying to keep all the medical equipment out of her mouth!!
 When Kemper had his MRI  they gave him IV sedation. This time with Kendall they just used gas to put her under and it was so much better. She had an easier time coming out of sedation and was back to normal in a very short time. It seemed like it took forever for K just to wake up post MRI.

Thankfully the MRI results were as expected too-  her auditory canal structure is intact as well as her auditory nerve so she is a perfect candidate for cochlear implants!

Hearing aids round two

 Well the time has come for Kendall to get her set of expensive chew toys  a.k.a hearing aids. I'll admit I wasn't as excited to get Kendall's aids as I was for her brother to get his.  Knowing that Kemper didn't get any benefit from them I was highly doubtful Kendall would either since she has the same degree of hearing loss. The only reasons we did get them were for that slight chance she could get some stimulation to that auditory nerve and the fact that we had to as part of the cochlear implant candidacy criteria. 

My sweet girl at three months old getting her first pair of ear molds made for her hearing aids.  Thankfully we were able to rent these hearing aids for about $500 as opposed to buying a pair.

Two weeks later Kendall sporting her Phonak Naida S III  hearing aids.

Like the pink sparkles? They were requested by her brother. He insisted that she get pink hearing aids. We couldn't get the actual aids in a color but luckily for us we were able to pick out the color of her molds.

It didn't take long for the squealing feedback noise to drive me nuts. Just the way I remembered. I think it's almost impossible to keep them on a child this young, especially when they are not sitting up yet. For the most part she has left them alone but they just squeal and fall out almost each time she turns her head. I tried putting a cap on her but she hated it and it just made the situation worse. Unfortunately she is not showing any difference in her hearing except for a few times we saw her turn her head to look at the dog when he barked, but we are not 100% sure she just didn't see him move with her peripheral vision.  We plan on getting her cochlear implants a little sooner than we did with Kemper so that should shorten our time using these pesky things!

Happy 3rd hearing birthday!!

February 11, 2013 

Three years ago today my baby boy heard his  first sounds  ever through the use of cochlear implants. We always take this day to say thanks to our family, friends, doctors, therapists, and teachers that have helped us along the way. K is doing awesome, far better than we could have ever imagined. If you didn't see his C.I.'s behind his ears you would never think this child was born profoundly deaf. While our journey is still not over, we are forever grateful for the love and support we continue to receive.

To continue his traditional hearing birthday we did our usual big family dinner followed by cake and ice cream.

Kemper insisted on going to the store and picking out his own cupcakes for his "ears"
He also insisted on having his own grocery cart. Thank you Kroger for supplying mini carts, they make shopping so much easier :) When we got to the cashier to checkout I asked him how he was going to pay for them and he replied "With the money in your purse!"

Time to blow out the candles with a little help from his cousin Nolan.

Enjoying his cupcakes and being silly with his cousin Nolan.

My husband and I try and keep it simple just dinner and dessert, but his grandparents can never resist getting him a present.They got him a garbage truck with all the lights and sounds of a real one. It even picks up trash and dumps it! It's such a boy toy & he loved it.

Cheers to many more hearing birthdays!!

Happy 2nd Hearing Birthday!!

This past weekend on the 11th we celebrated the second anniversary of Kemper's cochlear implant activation. Two wonderful years of hearing. If only I could have fast forwarded to this day when he was first diagnosed  I could have saved myself sooo many tears. He's doing great .He's just your typical toddler boy!

 

I love being able to celebrate his hearing birthday. It gives us a chance look back at all of our accomplishments and thank all of the people that have helped and supported us through this journey.

  K loves birthday parties, so the day before I told him we could make his favorite chocolate cake and invite our family over for dinner & a party for his ears. The morning of the party he woke up so excited, he didn't even have his"ears" on and he said " Mommy I wake up! I go to Target and get chocolate cake?"
He had fun decorating his cake with sprinkles and M&M's.

My side of the family over for dinner. I cooked K's favorite spaghetti dinner. K and my dad had us laughing as they waved their hands talking with an Italian accent " It's a spaghetti!"

yummy!

Cake time!!

We normally don't do presents for his hearing birthday but his aunt Maria couldn't resist. She got him a Mickey Mouse and friends t-shirt and underwear and also a huge cookie!

He had a great time. He kept saying "Everybody at my house!" he loved having everyone over.
We are all so very thankful for this day and the many more hearing birthdays to come!


Here is the video of Kemper's hearing journey I posted last year. I updated it a tiny bit. Enjoy!