Make a Joyful Noise…

…because Jake can hear it!

Yes friends, you read that right. My son can hear!

The journey has been arduous. The saga has felt unending. The obstacles have seemed insurmountable.

From the time Jake was a tiny babe of 5 months old, we knew that he had conductive hearing loss, due to fluid build-up in his ears. For the past four years, we have waited for those tiny ears to grow, so that tubes could be inserted to drain the fluid. We have struggled with hearing bands, hearing aids, more hearing tests than we could ever have imagined, failed surgeries, and so much more. Last month, we finally got tubes for Jake, the fluid was drained, and it was waiting time to see if it would actually work.

Super early on in the journey! This is called a “Baja headband”…basically does what hearing aids do but less intrusively!

Last week we had a follow-up hearing test at the hospital. These hearing tests are sometimes hard for Jake, as they require a lot of attention, and to sit still and follow instructions for long periods of time. The last test we had was deemed inconclusive, since he had a hard time cooperating. This time, however, he rocked it! He had an audiologist administering the test, and another one in the sound-proof room with us, helping him focus and concentrate.

When the test was done, the audiologist came in from the booth, looked at me with a smile, and told me that he had done a fantastic job. She then showed me his results, and he was in the normal range across the board!! Not only that, but she officially told me that Jake no longer needs his hearing aids! I looked at her, turned to Jake, and gave him a great big bear hug, tears of joy streaming down my face. It was such an amazing moment, to see something come to fruition that we have hoped for and prayed for during these four long years.

We will consistently go for follow-up tests, to make sure that everything is on track in the hearing department, but Jake has been officially discharged from the hearing aids, and declared to be in the normal range for hearing.

So make a joyful noise! We sure are…!!

 

[31 for 21] ~ That Is Progress, People!…

Hope.

Today’s word is hope.

Ever since we started preschool in September, we have been pushing the hearing aids.
“Hearing aids?” you ask…”Does Jake wear hearing aids?!”

The answer is yes. He does (sort of). We have had them for quite a while. We went through a phase where we used them a lot, and then I had a baby. And I found it almost impossible to do everything else that we had going on in our lives, plus try and watch Jake 24-7 to make sure he wasn’t ripping them off and trying to eat them (which he has done multiple times). When we started preschool, however, we decided that it really was in his best interest to use them, and so off we went.

The only problem was, they were too small. The molds no longer fit properly in his ears, and so he would get annoyed by them very easily (I don’t blame him) and then rip them out. Constantly. All the time. Today, however, we picked up our new molds. And wonder of wonders, he left them in for a good two hours before he began to try and take them off! Progress people, that is progress!

Wanna know what else is progress? (even if you don’t, I’m going to tell you!) He has come up to me several times, as well as to Curtis a couple of times (so it’s not just my imagination) with the case in which the hearing aids reside. He has handed me the case, and pointed to his ears. Hallelujah! They are obviously making a difference and he is clearly enjoying his heightened sense of hearing if he has asked for them several times now. Hope springs eternal…hope that he will wear them, that they will make a difference, and that his speech and communication will just take off from here.

*I recognize that these pics have nothing to do with hearing! I just liked them*

 

 

Knock on Wood and “Ho Ho Ho”…

Knock on wood…

If you’ve been following me for any amount of time, you will remember that from time to time I post updates on Jake’s hearing.  As I look back, the updates started around 2 years ago, when he was just about 6 months old.  And it is only FINALLY this week that I feel like we have a temporary solution that is going to be a great one!

The short version is this: Jake has fluid build-up in his ears, which is causing conductive hearing loss.  The goal is to eventually put tubes in, drain the fluid, and restore his hearing.  This has proven to be quite challenging, however, as my child has the smallest ear canals known to man!

The amazing, fantastic, incredible news is that this week we finally got hearing aids for Jake!  These should help in the meantime, while we wait for tubes.  They are really important in this phase of life, as Jake is now firmly entrenched in the age where he needs to be able to hear properly in order to acquire more language, speech, comprehension, and communication skills.  You can imagine, then, how thrilled I am that we finally have hearing aids!

The even more amazing, fantastic, incredible news is that so far, three days into having the hearing aids, Jake is actually doing a great job of keeping them in his ears (for the most part!!).  This is HUGE folks!!  The more he keeps them in, the better he is hearing, and the better he is hearing, the more positive the experience for him.  And believe it or not, I feel like I can see a difference already!  Maybe it’s just me being optimistic, but I feel like he is attempting to copy speech and to imitate new sounds more than he was doing last week!

Hopefully the streak continues, he keeps them in his ears with minimal issues, and we can finally begin to move forward in this journey that has seemed endless.  Knock on wood…

…And “Ho Ho Ho”…

We saw Santa today:)

At a Christmas party we attended a couple of weekends ago, our children were NOT into Santa in the least.  They screamed, they cried, they liked him from about a 5 foot radius, but refused to get any closer!  So, needless to say, we weren’t expecting the best reaction today.

In a surprising turn of events, however, our visit with Santa was great!  Our kids were totally into it, neither of them were scared or crying (although I did sit with Cole on my lap, just for good measure), Jake said “ho ho ho” as we approached him, and they both said bye with a smile and a wave as we were leaving, candy canes clutched in their tiny hands!

And I guess because I was in the picture, we can technically say that all three of our kids were present and accounted for!!

 

[31 for 21] ~ “Wordless” Wednesday…

…and Monday, Tuesday, Thursday, Friday, Saturday, and Sunday.

Wordless.

That is Jake thus far.  Wordless.  Non-verbal.  Non-speaking.

Here are the things I know that contribute to this:

1. Jake has Down syndrome.  Little ones with Down syndrome take longer to learn how to talk.  Partially because they have some cognitive delays, and partially because they have low muscle tone, which affects the muscles of the mouth and tongue, which are very important for speech.
2. Jake has some conductive hearing loss, due to fluid build-up in his ears.  It is hard to learn how to speak properly if you are unable to hear properly (for more on our journey in this area, look here or here)
3. Jake is rockin’ some other skills.  His social skills are amazing (as anyone who’s met him will know!)  He walked really early.  His gross motor skills are awesome.  But because he is so mobile, all his energy has gone into those skills.  He has not had a lot of mental energy left over for learning how to speak.

It’s not that Jake doesn’t know how to communicate.  Oh my word does he ever!  He is pretty good with signing.  His non-verbal communication, while sometimes frustrating to decipher, is constantly improving.  He is 100% personality, he knows exactly how to make known his wants and desires, and he is learning more every day.

But still…

We are waiting (often not-so-patiently) for a word.  For the day Jake says “Mommy”.  Oh how I long for that day!

 

Attention Span…or Lack Thereof…

Jake is a busy little guy!

He owns about a million toys, but rarely sits down and intentionally plays with any of them.  He would rather use the toy in some sort of non-conventional way, like throwing the pieces into the recycling, or dumping them into the laundry basket and pushing them around the house.  He rarely pays attention for more than a couple of minutes at a time, and besides meals, he hardly ever sits down.  He is just a go-go-go type of boy!

An increase in attention span is one of the major goals that we have for Jake over the next few months.  Today we started a six-month contract with a Developmental Aide.  She is going to come into our home a couple of mornings a week, and help me work one-on-one with Jake.  Our goals are related to attention span, increased communication skills, and honing some fine motor skills.  I am really excited for this opportunity, as I think it will be good for Jake to have structured time at home.

Today was our first day, and it went fairly well, all things considered!  He was able to focus for several minutes at a time on specific tasks, and although his attention span wasn’t as long as we would like it to be, it was a step in the right direction.  He actually engaged with a few of his toys that he usually passes by or ignores, which was fun for me to see.  And I heard him vocalize a new sound this morning!  We were reading a book and I was pointing to the picture of the snake and saying “sssssssssssssnake” and he attempted to make an “s” sound!  I am one proud mama, as that is a sound that he has never attempted before.  Because of his mild conductive hearing loss, the “s” sound is one that he has a hard time picking up on at all, so the fact that he not only heard me, but also attempted to imitate it back to me, is a HUGE milestone and cause for celebration!

We have also been having lots of summer fun…update on that in my next post!  For now, let’s just say that we are excited to work on our attention span and communication skills, and we are having a blast this summer!  Here are a couple pics to leave you with!  (they are off my iPhone, so the quality is not great…)

On Canada Day we went to North Glenmore Park for a picnic. Isn’t the backdrop beautiful?! Our city is awesome!

 

And…More Surgery…

That’s right.  There is more surgery in the cards for this household.  This afternoon, in fact.

This time it’s for Jake.

Technically, I don’t know if this would count as surgery.  Thousands of kiddos get it.  It is low-risk.  It is quick and painless.  But as a mama, any time you have to put your kid through something, even if it’s for their own good, it is still hard.  Any time you have to hand your kiddo over to a team of nurses and doctors, who are taking your precious kiddos life into their hands, it is nerve-wracking.

That’s the bad news.  Here’s the good news…this procedure is for Jake to FINALLY get tubes put in his ears!!  You can read more about this journey of patience we have been on HERE (written in Feb 2012) or HERE (written in Feb 2013), but needless to say, although I am understandably nervous, I am also incredibly excited that this day has finally arrived!  The goal is that once the tubes are in, the fluid that’s been sitting in his ears forever will drain, thus eliminating his conductive hearing loss.

Here are a couple of pics of my baby boy, 14 hours into fasting, waiting as patiently as he knows how in the pre-op room, and making all the nurses ooh and aah over him with his mischievous little grin and his happy-go-lucky antics…

Pre-op, just hangin’ out in the crib!

Jake taking selfies with my phone!

We are sad:(
And snuggly.

Trying to escape…

Yep, I totally photo-bombed Jake’s selfie!!

Update:  Well today ended up being extremely frustrating for me as a parent.  After starving my child all day, waiting around for what seemed like forever, carrying my precious Jake into the operating room, laying him down on the table, watching the anesthesiologist put him to sleep, and waiting anxiously in the waiting room, we found out that when the surgeon went to actually make the incisions in his ear drums and put the tubes in, his ears were, in fact, too small:(

So, here we go again.  Another 6 months of waiting, and we will have to do this day all over again.  Kudos to the surgeon for trying and for doing his very best to help us.  But alas, we wait.