August 25, 2015

Our hearing journey is finally over

  It's finally over.  It's actually been over since March, but I never wrote a post about it. Since our life has been pretty quiet lately, I thought I would update y'all on those sweet little ears of Sadies'.
  As everyone knows my quest for Sadie to hear has been off and on for her entire life.  We excepted her hearing loss early on. It's a part of who she is.  It's not a terrible thing, it's a just a different lifestyle that we were ready to embrace.  We were ready to learn sign language, ready to adapt our life.  All was good.  But as Sadie started to show more about who she was and what she struggled with I started to rethink her hearing loss and started to consider a cochlear implant (CI).
  We tried the hearing aids in the very beginning, but seemed to be get no where with them, even though occasionally we swore she heard us, it just wasn't consistent.  And since the beginning of her life we had also tried signing with her, but we couldn't even get a wave out of her (at least not one that was consistent with hi or bye).  She can't stand her hands touched, so to try to attempt forming her fingers in any type of sign language was impossible. I was frustrated and I felt terrible that Sadie may never have any form of communication with anyone other than us.  That's when I really started to look into a CI.  Who would have thought that journey was so long and complicated!
  Fist we saw (or we were planning on seeing) a CI Dr here in our hometown. However, that Dr said, without even meeting Sadie and just reviewing her medical records, that he was not going to touch her and she was not a candidate for a CI. In a way, I appreciated this because it saved me some time and energy and I thought "OK, well I guess that's that".  However, a few months later, I was not OK with this answer and got really sad again about the whole situation.  He didn't even give her a chance.  Od course you know what happened! I started to look again.  Found another CI Dr about 2 hrs away.  I pursued this Dr.  After meeting with him and his crew about 3 times or so, he finally decided that nothing seemed concrete or consistent when it came to her hearing. He decided to do a test under general anesthesia called a promontory stimulation. It is test that they actually go in the ear and touch the actual auditory nerve with an electrical probe (or something like that) and then they watch the brain response to see if the part of the brain that is for auditory, lights up.
  In February we had this test performed and then in March we got the final report and the Dr's final thought about her hearing.  The test showed that after multiple attempts to stimulate the left auditory nerve, there was absolutely no response from that ear. Which is also consistent with the MRI findings, "no nerve was seen".  But the right ear when stimulated would show a response. But it was extremely inconsistent. Sometimes the nerve would "spark", other times absolutely nothing.  The Dr described it as "fatiguing quickly".  This also was consistent with the MRI, as it showed a very thin nerve on the right.  I found all that out the day of the test.  The Dr then ended our conversation that day with "I'm not sure what to think, but I'll run it past all my colleagues in different states that work on difficult, not so simple, cases to get their opinion before we make a final decision".  I knew in my heart the answer, but I still hung on to a string of hope.
  Finally at the end of March, I got the word that it was over.  Sadie was not a candidate for a CI.  Even though I knew in my heart that this was the answer, even though I had been told this by another Dr, I was still super sad and shed a few tears.  Not because she can't hear and never will, but because she has so many challenges in life, I just wanted to try to make one thing a little less challenging.
  It took me awhile to get over it, but as always I did.  Sadie is who she is, and I can't change it. I can only embrace her for who she is and go forward from here.  Do I still think that she can hear us sometimes? Absolutely! Do I still talk to her like she can hear? Absolutely! Does she respond to us at the most perfect times? Absolutely! That one nerve sparks often, just not often enough for a CI to work.

This was taken after the testing was done and we were headed out of the hospital.  I'm pretty sure I could read her talking in herself in her mind here and she was telling me "stop taking pics, I'm tired, put me in the car, I'm over all this testing"!  LOL I love her!

*By the way, I have found another hearing option. It's called an auditory brainstem implant (ABI). But it's still in the beginning trials for children here in the US, but it's been successful in other country's. Soooo maybe in the future our hearing journey may begin again, but for now... we are content.

August 19, 2015

Theraputic Kitties

   I grew up with animals. I think animals are important for kids to have. They teach compassion, responsibility, love. They are great companions.  I know typically most people gets dogs as a therapy pet, however, we already have a basset hound.  Since I love cats and all of my cats that I have had as adult have passed away from old age, I thought it was time for another cat.  I started searching. I wanted an old cat that wanted to just cuddle and lay around and was tolerant of movement. I searched for probably a year or so (only on-line).  Didn't really have much luck. The girls and I started to go to different pet stores, the pound, cat rescues, etc...  One day we went to the pound and Chloe fell in love with this cat. She wasn't old like I wanted. She wasn't calm like I wanted. But she was very lovey, and purred like a little engine.  She couldn't get enough of us. The girls quickly fell in love with her.  After I himmed and hawed around and debated for awhile, I finally agreed.  We brought Jacquelyn home (Jackie for short).  After she warmed up to the family and environment, she quickly took to Sadie. Jackie doesn't lay down with Sadie as often as I would like her too, but she does hang out with her occasionally.  I'm hoping that as the cat gets older and being that she will already be used to Sadie she will lay with her more often.  We shall see.  (By the way, we got this cat back in January. She was 6 mo old).
First they just laid next to each other.

Then Jackie started to reach out for Sadie,

Finally Sadie started moving closer to her. Now obviously with Sadie's avoidance with touching things with her hands, she didn't reach out. But she did reach out with her foot.  She did this several times. Jackie just laid there and was patient as Sadie kept "kicking" her.

Then 3 months later (in March) I was looking for volunteer opportunities for the girls to do this summer.  Since they love animals I thought I would look into animal shelters and such. I found that there was a cat rescue house about 2 miles from my house. Perfect!  So one day we all went there to find out more details.  We looked around at all the cats and took a tour of the building.  As we walked around I asked about the volunteering, they told me that they only took volunteers 18 yrs and older.  I was bummed, so were the girls.  As I went to leave, I looked for the girls and they weren't around.  I found them cuddled up with a cat. A very sweet, fluffy, beautiful, 6 mo old male cat. I knew in my heart how this was going to end, but I tried to stay strong.  I told them no over and over.  But the cat just kept laying there in their arms like a baby, purring, and looking at me like "I'm so sweet, adopt me, your girls love me and I love them". He was so docile. I gave in. I couldn't help it. He won my heart right away too.  So we adopted him on the condition that he got a long with Jackie and Slinkey (our dog).  Luckily for the cat, he fit in perfect with our family and the other pets.  We kept him.  When I took him to the vet for a check up. They told me that he was a Maine coon. Come to find out that they are known to be therapy cats because of there gentle, sweet personalities and nicked named "the gentle giant" because of their large size.  Crazy how the Lord works in mysterious ways.  This cat is amazing with the girls.  He tolerates everything and never complains. When they are done he just gets up, walks away, and sleeps.  This is Rocky.

All stretched out.  He just turned 1 yrs old.  He's supposed to keep growing until he about 3-4 yrs old. He's going to be a big cat!

August 14, 2015

Surgery #6

   Here I am, again, sitting in the waiting room waiting for Sadie to come out of surgery.  This is the last place I thought I would be this summer.  But as usual Sadie makes her own plans and I just do what she says.
   The summer has been full of eye infections.  Luckily, no ulcers like we have had in the past, but many scratches to the cornea that led to surface infections. It all started the week before school was out (so the last week of May).  She started poking herself in that eye and grabbing her cheek/eye area.  If you recall from my past posts, Sadie does not feel her eyes or her face for that matter.  So poking them doesn't hurt and she doesn't realize that she shouldn't do it.  It used to be a huge problem when she was a baby, but over the last year or so she has left them alone.  The beginning of June we started to visiting her eye Dr.  We also took her to the ENT to make sure it was not an ear or throat infection, we also even tried the dentist thinking that maybe it was her teeth that was bothering her.  All those appt's led to nothing, no reason for the poking.  It's just one of Sadie's little quirks.  However, this quirk can lead to big problems.
   As we continued to visit her eye Dr (frequently I might add) and tried many different ointments and washes, it became clear that we really needed to do something with this eye.  That's when surgery was mentioned. The Dr stated that if we couldn't get this eye infection under control that he wanted to do this fairly rare surgery that involved an amniotic sac  "band aid", sewing them half shut temporarily and some other stuff.  That night Sadie and I had a heart to heart chat about how we really don't need more surgery and she really needs to leave her eyes alone so that they heal.  She listened, for the most part.  Over the next week or two her eyes healed up and were looking good.  The eye Dr said there was no need for that surgery anymore. Yay!  But he wanted us to go to a plastic eye surgeon because of her bottom eyelids.  Sadie's eyelashes turn in because of where her eyelids lay.  Her eyelashes are scratching her cornea.  This is not new news.  We saw this same plastic surgeon when she was about 6 mo old or so for this same problem, but at that time he wanted to wait to do anything until she was older.
  The next week we got into see the surgeon and then surgery was scheduled for the next week.  Which leads us to today.  Her official surgery was called bilateral Entropion repair.  All they are going to do is make a small incision under both eyelids do whatever it is that they do and put some dissolving stitches in there.
  The surgeon hast two outcomes that he wants from this surgery. 1. the lashes will stop scratching her eyeballs and causing infections and 2. maybe open the eye itself up some more.  Sadie has squinty eyes.  I think it is more of a trait that she got from my husband. But squinty, plus a paralyzed side of face doesn't make a great combination.
 This was in the PACU. You can tell Sadie was not awake yet as she let me hold and play with her hand.

Now she's awake and happy.  Hasn't cried or complained.
Headed home!  She rocked this surgery out. No complications or issues.  She's becoming a pro at surgery.  I hate that she's had so many, but so thankful that she handles it so well.
And these are her "new" eyes.  They are wide open. Her eye lashes are no longer on her eyeball.  She looks so different to me!  But still just as cute as can be.


August 05, 2015

Random highlights of the summer

*Our neighbors house caught on fire.  My girls and some of the neighborhood girls wanted to help so they set up a lemonade stand. They raised over a $100.  These girls rock and have a huge heart.
*The girls found a snake.  Chloe was dared to pick it up.  Gross!  But look at that face. She loved that she took the dare and did it.  That's when I know she is her fathers daughter. Cause I would NEVER do that.

*Chloe was in a parade for girl scouts.

These guys waved as she rode by.

*We went to the beach.

Sadie had school this day so she didn't get to go, but I'm pretty sure she was ok with this.  She is still not a fan of the heat and gets a little a crazy when over heated.  Plus, with the fact that she doesn't feel her eyes and blink appropriately, I would hate for sand to get in there.  We already have enough eye issues going on this summer as it is.
*I jammed my finger and ripped the tendon off the bone. Really? Ain't nobody got time for this!  I have to keep this splint on 24/7 for 6-8 wks.  If I accidentally bend it while changing it to the other splint, I have to start the 6-8 weeks over again.  I originally wasn't going to do anything, as I thought it was just jammed, it couldn't be that bad.  Well, guess I was wrong.  The swelling got bad and I had to take my wedding ring off cause my finger was turning blue. 
*Slinkey got hit by a car.
What a day that was.  Aubrie accidentally let him out of the back yard and since he is a basset hound, his nose took over and off he ran.... right in front of a car.  The girls witnessed the whole thing.  I hear this blood curdling scream from Chloe as she runs in my house and screams that Slinkey got hit by a car and is dead.  My heart stopped, I ran outside. Slinkey was not dead, but he was hobbling pretty darn bad over to the side of the road.  I went over to him (along with a bazillion other people and 6 little girls that witnessed the accident). Slinkey was holding up his leg and blood was dripping from it. I sent the girls all over to a friends house and Slinkey, Sadie and I went to the vet.  Sure enough he had an open ulna fracture and lots of lacerations. He earned himself a night in the hospital, lots of stitches, and the "cone of shame".  He's a lucky dog that he didn't get hurt more.

August 02, 2015


  We went on an impromptu weekend vacation.  Nothing to fancy. Just wanted to spend time as a family.  Just somewhere out of town to get our minds off of the dramatic life that sometimes surrounds us.  Sometimes I think I get so wrapped up in the everyday bump and grind of life and work, and the electronics, and the drama of other individuals and all the medical research, Dr appts and therapies, that I sometimes forget one of my most important jobs... my kids and husband.
  Friday night I told my husband we were pretending we were rich for the weekend and we were just going to go and have fun and not think about the money.  That's what we did.  At first it took a little bit to figure out what everyone would enjoy and we had to make the most out of our time restraint, and even though we were going to pretend to be rich we still had to be a little realistic.  We took the girls to Soaring Eagle indoor waterpark and hotel.  Somewhat close, somewhat cheap, easy access for wheelchairs, no extreme heat, activities for all ages and sizes.  It was fun.  All of us had a good time.  It was a much needed breath of fresh air.


We didn't tell the girls where we were going. After I checked in and gave them the brochure there was so much excitement and happiness. It was so worth waiting to tell them (even though there was a lot of complaining in the car on the way up "Are we there yet?, I'm hungry, I have to pee, I'm bored."  You now the usual stuff kids say that drive parents nuts).

Here they wait so patiently for mom and dad to get ready and for their crazy mom to stop taking pictures. 

   The first day we immediately put Sadie in the lazy river.  We thought floating down a river would be relaxing to her.  We were WRONG! She hated every minute of it.  She screamed the entire time and then we put her on the lounge chair where she screamed the rest of the time we were at the park that night.  She did her regular "frog pose temper tantrum".  In hind sight, it was not the lazy river that she hated, it was the life vest that she had to wear.  The lifeguards wouldn't let her in without one on.  You would have thought it was a torture device for her.  The pic below was taken in between screams when it appeared that she was calm.  Looks can be deceiving!
Many fun things for the girls to do. 

This was the big waterslide.  The one that twirls around outside and then dumps you in the lazy river.  Aubrie was scared to death of this slide from the minute we got there.  We'd ask if she wanted to go on it and she would say "NO WAY"! All of a sudden she grabbed this two person inner tube  and said "lets go Chloe".  And she and Chloe drug this huge tube up 4 stories of stairs and down they came!  I was so proud of her for conquering that fear.  Even though she said she hated it, she went on it a couple more times. ;)  I asked Chloe later when we were alone, if Aubrie freaked out at the top before they came down, she said "yes, but I told there was only one way down and she HAD to go down." Sisterly pressure and love!
Aubrie wanted to try to include Sadie "all by herself".  We wouldn't let Aubrie do to much with Sadie cause we didn't want any drowning accidents.  But this was one thing that Sadie liked and couldn't drown. 

Rocking climbing wall. You climb up and then fall in.  Chloe never made it very far up, but she tried and that's all that counts.  It took her a long time to build up her nerve to do it.
The big bucket of water would fill and then spill over.  Not sure how much the girls liked that, but at least they participated... once.  Lol
Day 2 we started Sadie off by just letting her chillax in the lounge chair.  This was much more her style.  Much more happier then she was on day 1.
She chilled for a while and then daddy took her in the water sprinklers.
Wasn't her favorite, but she tolerated it.

Finally, Sadie's favorite activity. The hot tub!  I think she was suppose to have a life vest on but they either didn't see us or choose not to say anything.  Either way Sadie just relaxed, kicked back and put her legs up.  She cracks me up!
Daddy worked in a very short therapy session where she practiced standing.  Look at that form: straight legs, back and chin up, no arching.  She is working so hard at therapy these days.
After the hot tub and "therapy session", it was time for her to eat.  She ate and fell sound asleep.
Then the ride home.  I'd say it was a pretty successful, fun weekend.