Monday, July 06, 2015

Progress

How does time fly by so fast?  Seriously, I didn't think it had been over a month since I posted anything!

It's been a month full of pulling first teeth...



Swimming lessons, during which we had our first ever tornado siren go off, which meant getting out of the pool and heading into the arena to wait it out.  No tornadoes touched down in our town, but there were some small ones just a ways away from us.

Just last Tuesday we had our driveway cemented!  That was pretty fun for the kids.  They loved helping tie the rebar and watch the workers fill the forms with cement.  And now, they are definitely enjoying the smooth surface.  In just a couple days, I will finally get to park in my garage again, after weeks of parking on the street!



As for Holland, I would say it's been a monumental few weeks for us.  Just last week I met with our audiologist at Central Speech, J.  He's pretty great.  He seems to understand Holland and her crazy awesomeness.  We were supposed to do a hearing test with her hearing aids in, but J decided that instead of putting her through the stress of something she totally doesn't get yet, we would just have a chat.  Which was good.  He asked me to fill out some paperwork and then a questionnaire that helped us to pinpoint where she is with her listening skills compared to where she should be at her age.  She has definitely made improvement in the past 3 1/2 months, which is great.

video


At one point J asked how Keith and I are doing and where we are at with everything.  That was my cue to tell him that we definitely want to go ahead with a cochlear implant for Holland's right ear.  See, up until this point, we hadn't really said yes.  It's been on the table, so to speak.  But I have been hesitant.  It's surgery on my baby.  It means a lot of hard work and therapy.  Though, who am I kidding; no matter what choice we make, it means a lot of hard work and therapy.  My biggest hang ups are the fact that she may have to have a CT Scan which would expose her to a lot of radiation, and she also needs to have a meningitis vaccine.  I don't really want to get into it, but I'm not thrilled with this.

Ultimately, knowing that Keith has always been very much for cochlear implants, and that I hear such amazing success stories, I finally gave in and decided that we need to do this, ASAP, so Holland can have the best chance at learning to listen and speak. We are hoping for a surgery date in early September.

And still, deep down, I really really want us all to learn ASL.  I think it's incredibly important for us to make an effort to learn a language that comes more naturally to Holland.  I just hope that I can find the support and energy to do it all.

Today Holland had her MRI.  I am praying that they got really good images so that we can avoid the CT Scan.  Holland was a real brave girl.  She didn't get to eat or drink until 12:30 today.  She had to be sedated, since it's pretty much impossible for a toddler to stay still long enough for an MRI.  She didn't even flinch when they put in the IV!  That was pretty awesome.  I couldn't even look.  I just held her tight while she watched.  It was the weirdest thing when they gave her the sedative and she instantly flopped!  I was holding her head while she sat there, and all of a sudden she was limp!  When she woke up, she was mad about the IV and the monitors.  But otherwise, she perked up once she had a little snack. 



Anyhow, I'm exhausted and I have a lot left to do today.  So off I go!

Monday, May 25, 2015

Lazy Sunday Afternoon Update

Hello, friends!  Yesterday while lounging around all afternoon, I thought about how I should probably post a bit of an update here on the old blog.  I even attempted to film some video of Holland to show you what she has been learning at her therapy sessions.  While I did get some cute little videos, she didn't feel like cooperating.  Silly girl!

So, let's get to the updating.  Maybe a quick recap?  Holly was diagnosed in early February with bilateral hearing loss.  Severe in her left ear and profound in her right ear.  In mid March she was fitted with hearing aids and has been wearing them daily for the past 2 1/2 months.

We also started therapy in a city that is 1 1/2 hours drive from us.  So I take Holland once a week to sit and "play with toys" aka, learn to listen and speak.  We play with playdough, shape sorters, wind up toys, sand, water, and many other things.  Holland's therapist, let's call her B, is wonderful and knows how to keep things moving so that Holland doesn't get too upset about sitting for an hour.


About a month ago we started to see some small steps forward.  She is now starting to babble a bit like a baby.  She says "mamamama" which is pretty cute.  I wanted to catch it on video, but haven't yet.  Hopefully soon!  She is also starting to use the rhythm of speech in her babbling.  So she might use "um um um" to mean come come come.  Slow and steady!

We are definitely still pursuing a cochlear implant for her right ear.  There are tests and and appointments that need to happen before we know for sure if she is a good candidate for the surgery.  She will need an MRI sometime soon.  Possibly a CT Scan.  I'm hoping to avoid the CT, if at all possible.

Overall, I'm encouraged with how things are going, though there is still a very long road ahead of us.  I can't wait to feel like I actually know exactly what is going on and who to ask which questions.  It's getting easier, for sure.


I will end with an interesting little story from last weekend.

We spent the weekend at my in-law's house, three hours from us.  We did fun things like visit the Narcisse Snake Dens.  Maybe I will post about that later :)

On Sunday evening, while it was SNOWING outside... yes, snowing, my Mother-in-law mentioned that we could call up a relative that has two deaf kids and see if she would like to meet us sometime.  I was kind of hesitant, because I'm not a phone person. Especially not with strangers!  But, she made the call and then put me on the line.  I chatted with the mother of the 2 deaf "kids" who are actually adults.  We hope to meet her and her daughter in a couple weeks!

The most interesting part of the story is that they helped to start the clinic where we go for therapy.  Years ago, there was no place in our Province to get Auditory/Verbal therapy, so they had to drive quite a distance.  A bunch of parents got together and started this clinic, where they now have a great staff available to help out families like ours, free of charge!  Pretty awesome.

So, that's it for today.  Thanks to those of you who tough it out and keep checking back here for updates :)

Monday, May 04, 2015

Little update

The past few weeks have kind of flown by.  Not much to say or share, but I thought I would post a little something.  This post will be rather unorganized and random!

The weather has been amazing here for the past while!  Summer temps in April... love it!  I think we may have been close to hitting 30 degrees (Celsius) a couple times.  Needless to say, we have spent a lot of time outside!

Rowan and Bria are both doing well in school.  Just 2 months left and we will be enjoying summer break.  This year really flew by.  I know I didn't blog much (or at all) last school year, but Bria hated going to school.  It was really tough to even get her in the door to the school sometimes.  This year, she has been so much better.  Though she still struggles with getting ready fast enough in the morning.  She is not a morning person!

Bria also participated in acting classes from January to the beginning of April, when they put on a play that they wrote themselves!  She played Anna from Frozen, and she had a blast.  I think with some practice, she could be a great actor.  She memorized all of her lines really well.

Emery is having a blast riding her bike this year.  She only needed a few minutes to remember how it all works, and she was off and riding!

Holly has been showing some change in regards to response to sound.  She now turns to me when I call her name, which is so awesome!  Of course, with hearing aids, there is a distance issue.  We have to be close enough to her for her to hear, but I'm still really encouraged.  She also just started babbling in the past few days.  She says mamamamama.  It's really cute :)  It's fascinating to watch a 2 year old babble like a baby though.  They really do have to go through all the same developmental stages of hearing as a newborn!

Holland got a cute wooden puzzle for her birthday.  I think we must do that puzzle at least 10 times a day.  I'm glad she loves it, but it does get old after a while!

Emery and Holly have been taking turns being sick this past week and a half.  Emery started with a sore throat and double ear infection.  Then Holland got a nasty cough.  Now Emery is fine and Holland still has a horrible runny nose.  Both things have prevented us from going to AVT therapy for the past few weeks.  It's pretty disappointing because we need all the help we can get!  They just don't want any sickness in the building, and I don't blame them.  Hopefully we can try a session via Skype tomorrow.  If I can figure that all out.  I've never used Skype before.

Tomorrow Keith turns 32!  Crazy, I know.  He doesn't look a day older than 29... haha!

Wednesday, April 22, 2015

She turned 2

So I'm completely behind on posting this, but better late than never, right?

On April 14, our little Holland Grace turned 2.  What a wild ride these two years have been!


Surprise baby. My only late baby. She threw me for a loop.


But oh do we ever love her!  She is such a little bundle of energy and cuteness.


We kept her birthday celebrations pretty low key.  Just cake and presents here at home.  She honestly had no idea it was her birthday anyway :)


Happy Birthday, Holland Grace!

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!