Tuesday, March 17, 2015

When my heart is overwhelmed

I know it's been a while.  I've been trying to process everything that's been going on lately, and while I'm still not there, I think I can think clearly enough to write some of it down.

March 5th we were back at Children's Hospital to see C, the audiologist, and also meet our new ENT.  Let's call her "J".  C did another hearing test.  This time Holland wasn't quite as cooperative.  She had a slight cold, and apparently that can make it even less fun.  So, they did the best they could which resulted in a confirmation of the previous results.  Holland is definitely severely hard of hearing in her left ear, and profound in the right.  We were then discharged from C's caseload.  That means we will just be seeing H from now on.

J was really nice, just explaining to me the different types of tests that we need to do to find out more about Holland's hearing loss.  She will need an eye exam, electrocardiogram, MRI, possibly a CT further down the road, and we have the option of doing genetic testing to see if there is anything that we could have passed on to her.  This all seems like a lot for a little girl.  It makes me sick to my stomach, just thinking about it all.  We go back to see J again in June.

March 9th we were back in the city, this time at a place called Central Speech, which is the place where they do auditory/verbal therapy.  They work mostly with cochlear implant users.  In fact, if Holland does get an implant in the future, this will be the only option for therapy.

Our meeting was just for information purposes, to help us decide if we wanted to go there for therapy.  They talked about implants and how they work, as well as what type of therapy they do there.  One red flag to me is the fact that they don't allow the use of sign language with this form of therapy.  The staff there don't even know any sign language.  They did explain that this is a very critical time for Holland to learn to listen and speak, which makes sense, but I would hate for her to be left with no language at all when in situations where either her aids or implants don't work for some reason, or there is too much background noise to hear anything.

We did decide to go this route regardless of their view on sign language, simply because we may end up going the route of a cochlear implant.  We will be traveling to the city once a week for therapy. We figured that starting therapy there would be more beneficial than possibly having to switch partway through.

March 10th we went to see H for Holland's hearing aids.  He fit them to her ears and taught us how to put them in and turn them on, etc.  Holland did fairly well.  She was fussy, but it was also nap time.  We did notice a reaction when they got turned on.  Her eyes lit up and she seemed to notice the sounds around her.  I would like to say that she loves them and is hearing things.  However, she pulls them out constantly and I don't know what she hears.  It's been a full week now, and she seems to be getting worse instead of better at keeping her hearing aids in.

Sunday, March 01, 2015

Audiogram and Putty Buddies

In case you have never seen an audiogram (I never had until recently) I figured I would show you what it looks like.  Basically, I don't understand a lot of it, but I can figure out the basics of the main graph in the middle of the page.  Hopefully we will continue to learn more as we continue this journey.


This morning we tried out the Putty Buddies when I gave Holland a bath.  I'm not 100% convinced that they worked as they should, but I'm willing to give them another try.  It was hard to tell if they really sealed over her ear or not.



They are basically very soft silicone that you can mold into whatever shape.  They are supposed to seal over the ear to keep water out.  I actually was able to just rip one in half and use a piece of it for each ear, since her ears are so tiny.

This week we go to see the audiologist "C" in Winnipeg.  They are going to repeat the hearing test just to make sure that the results show an accurate representation of Holland's hearing.  Though C was pretty sure that she got a very accurate result.  We shall see.

We also hope that her hearing aids will arrive this week.

Next week we will visit the cochlear implant clinic in Winnipeg to begin the process of testing and learning about implants.  If the hearing aids do not benefit her enough, this will have our foot in the door and the process started for implants.  We don't want to waste any time!

Thursday, February 19, 2015

Happy Birthday Emery Shae!

5 years ago today I woke during the night because I thought I needed to go to the bathroom (once again), only to realize that I was having contractions.  4 hours later, Emery Shae was born into the world!  She was 8 lbs 10 oz, and 20 1/2 inches long, and loved much by her big brother and sister.




 1 year

 Her second birthday at Grandma & Grandpa Friesen's house.

Her third birthday, shortly before we moved to our new house!

Fourth birthday


When Emery woke up this morning and came downstairs, I was ready and waiting for her.  She has been so excited, anticipating her birthday for months!  

  I wanted her to be happy when she woke up, so I lit a couple candles and had her presents waiting.

Her sleepy little face showed up a few minutes later.

 She enjoyed her Cheerios for breakfast after opening her gifts.
 
 This is what we got her.  We hope she will love zipping around outside with it!

She picked out her hairstyle for the day too.

Emery is such a sweet little girl, eagerly looking forward to starting school in September.  She makes friends easily and loves to go out for the morning to play with them, or to have her friends come over to our house.

Emery is 46 1/2 inches tall and 50 pounds!!  She is our tallest 5 year old yet!

We love listening to the things she says and hope that she keeps her sweet spirit.

Here's to another great year!

Tuesday, February 17, 2015

Valentine's Date

I wasn't sure we would be able to go out at all this year.  We usually go out for dinner, nothing too fancy, but this year we had no plans.  But by late morning we found out we would get the chance to go out after all.

Last year my Mom & Dad invited all of their grandchildren over for a special dinner on Valentine's Day, and they decided to do the same thing this year.  The kids had a blast making their own pizzas, and it provided free babysitting for us!

So Keith and I drove around, since we hadn't made any reservations.  We tried one of our favourite spots in town, but the wait was an hour.  We decided to try a restaurant that is really close to our house, but is more of a senior's hang out :)  It's in a complex that houses a senior's home, pharmacy, grocery store, etc.

We only took one picture, so no evidence of the night, but we had a nice time visiting and eating our Mennonite food.  Dessert was especially good.  Keith ordered a blackberry rhubarb pie and I had a lemon blueberry cheesecake.  Mmmm... so good!

Mostly, it was just nice to spend some time alone, just the two of us.  I can't remember the last time we did that.
Can you find the bird?



Friday, February 13, 2015

One more Audiologist visit

Sitting in the office
Yesterday H called and asked us to come in one more time this morning.  He had some more options to share with us.

The audiologist who made the diagnosis is in another city and had sent Holland's audiogram to H.  He clarified a few things with her (let's call her "C") and wanted to tell us about it.  He also wanted to do another impression of her right ear because it didn't work that well on Wednesday.

Holland knew that the blue goop needed to go in her ear
Holland has more hearing in her left ear than in her right ear.  She has a severe loss on the left. Holland's right ear is right at the bottom of the chart.  All levels were above 90, so a true profound loss.  Some levels were above 110.




 H thinks that Holland may not be able to make much use of a hearing aid in her right ear.  We have to still try, since that is a requirement, no matter what.  But she may be a candidate for cochlear implants.

Waiting for the blue goop to harden
So, we are getting a loaner pair of hearing aids for her in the next few weeks.  We can use them for a while to see if they help her at all.  H thinks that because they have to amplify the right ear so much, it may just distort the sound so much that it isn't helpful at all.

So we don't have to purchase the hearing aids until we know if they actually help.  This is good news!

Of course, I dread the thought of cochlear implants, but I'm willing to do it if it will help Holland.  We are being referred to the cochlear implant program in another city.  We should be able to get information and see if Holland is a candidate for the surgery or not.

Also, we go see an ENT in March to do some testing into what caused Holland's hearing loss.  That will also help determine whether cochlear implants are an option.


In the meantime, I found a few fun products that we will use to help Holland in various ways.

The first one is to keep her ears dry because she has T Tubes.  I found these Putty Buddies and Ear Band-It for swimming.  We have a few plans for family trips this year and we want her to be able to enjoy the water.  The ear plugs will also be helpful for bath time.  It's tricky to wash her hair without getting water in her ears.



I also found  a product to help her keep her hearing aids clean, dry, and on her head.  Ear Gear sounds like a fabulous product and I hope it helps us keep track of those tiny little hearing aids.


Thursday, February 12, 2015

Around our home today

Today is an at home day.  Rowan has been sick the past two days, so here we stay.  So I have baked spelt bread, mixed some cookie dough, watched my girls do their thing, and catered to my sick boy. 

Here are just a few pictures.
My kitchen after baking bread and making lunch...





Mmmm... looking yummy! 

Somehow when I stay busy, it makes me happy

Wednesday, February 11, 2015

Hearing Aids

Today Keith and I took Holland to see our local Audiologist.  The topic of the day: Hearing Aids.

For the sake of privacy, let's call the Audiologist "H".

H says that based on Holland's current audiogram, she should do well with hearing aids.  So we talked about the cost (crazy, I tell you!) and how they work.  Then H made impressions of Holland's ears.  She was such a little trooper and thought it was pretty fun :)  I wish I had my camera with me to capture the funny blue goop in her ears. 

In 2-3 weeks we should get her hearing aids and see how she does.  Apparently we get to pick the colour.  Any ideas?  Pink or purple would be the typical girly colours.  I haven't seen what all the options are though.

When we got home, of course, it was lunch time :)