#19 (Assessment Results & Waiting)

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Today’s post is dedicated to any parent who has had to learn the difficulty that surrounds waiting for an answer on your child’s health. I don’t care if it’s the minutes waiting in the office for a quick strep test or the agonizing time parents go through waiting for more major results, there is no stress like that of the mental torture a parent endures when given the time to imagine their baby in any amount of discomfort.

Summer has come and gone, for us it was packed full of adventures and memory-worthy family time. We were able to spend a lot of time regrouping and for the first time in a year, we had a brief reprieve from the constant and strenuous schedule that is our real life.

Now school has begun, both for me and Kayla. Finn’s appointments and therapies are getting scheduled for regular weekly time periods again. Dan gets the burden of being the daytime parent/Finn’s advocate thrust back mainly on his shoulders while I’m at work. It’s an adjustment we knew was coming, but that won’t make it any less difficult.

Even though we had a lot of down time this summer, we also got something accomplished that we have wanted for a while now. I’ve written previously about our worries about Finn’s development outside of just his hearing and language. He’ll be 16 months in just a couple of days and though we are so proud of the progress he has made in the last few weeks, it has been obvious to us that there are some major gaps in his development unrelated to hearing.

We’ve known this for awhile and actually started raising concerns to Early Intervention (EI) as early as last January when they assessed him. We advocated all spring and Finn was in to see a neurologist (who cleared him), started OT at Boston Children’s Hospital (BCH), added PT to his EI speech & language services. All these things were great and we definitely saw some progress (especially after he started OT), but by June when he was evaluated by EI for his yearly assessment, we were still concerned that Finn seemed to be significantly delayed in a lot of areas. As good as most of EI’s services have been, they’ll be the first to admit that they are limited in what they can do as far as diagnosis and more specialized areas. At that point we had some of his specialists saying he was fine, just a little delayed, some blaming his low muscle tone, some saying it could be vestibular, and other “maybes” and “could bes”. Our heads were spinning: are we just overreacting or are we not being proactive enough?! Are we getting the right services for Finn or are we expending unnecessary energy (for him and us) on services that aren’t even effective? Or does he need MORE services and we aren’t doing enough?

At this point our development specialist through EI suggested that we might want to take him to BCH for an overall assessment. Our trust in BCH has never waivered and we put our faith in the doctors there. The assessment day was long, but the doctor was (as usual for BCH) incredibly patient and thorough. She even took part of her time to talk with Kayla about how she felt about the past year and Kayla got time to express herself and how she sometimes doesn’t feel as special as Finn even though she loves him very much. It was a very touching connection that the doctor made with her that she had absolutely no responsibility to do, but did anyway because, as time has proven again & again, BCH treats the family, not just the patient.

After the assessment, the doctor went above and beyond to make me feel like Finn was her most important priority. Unlike a lot of Finn’s caretakers, she wasn’t going to be looking at him from her own narrow specialty (not at all an insult to his other specialists, just the nature of the job), she was going to get data from his pediatrician and EI and analyze everything. We set an appointment for a month later with her and our otolaryngologist. In between, Finn also started having some issues with one of his Cochlear Implants (CIs) and for the first time since he was activated, he would blink and cry whenever we put them on him. Though we were reassured that a change in program with his audiologist would probably fix that issue, it was more than a little unnerving for dan & I who (as usual) started worrying about the slight possibility of it being an internal issue that would require another surgery.

Luckily, the day we came in for Finn’s other appointments, his audiologist swooped in while we were in the waiting room for the other doctors & grabbed the CIs (and Kayla whom she took with her for an adventure- and I think to give us some grown up time with the other doctor) and when we got the CIs back and later tried them out, he didn’t seem to be having any discomfort anymore (still blinking a little, but no tears! Yay!).  One problem solved.

The meetings with the otolaryngologist and the developmental psychologist were not so straightforward. Finn’s test results came back significantly delayed in all areas on the Bayley assessment. We had been expecting low results on speech given he doesn’t talk nor sign and we thought he’d score on the lower side on motor skills, but I was taken aback by other results (such as cognitive) being low. Ironically enough, his highest score was receptive language – yes, even in the midst of finding out not great news, Dan and I got a chuckle over the fact that our deaf son’a strongest skill was “receptive language”.  

Well ok, what does that all mean? That’s why we did the eval, right? It means more tests and more waiting! There are still a lot of possibilities that his being born deaf + significant delays in multiple areas could mean. And there’s still a possibility that they could be unrelated (though that seems to be too much of a coincidence).

There is one possibility out there that Dan and I are trying our best to educate ourselves about, but at the same time, we are trying not to get needlessly upset or anxious about.

When Finn was diagnosed as Profoundly Deaf, we learned that  sometimes his type of hearing loss, when more obvious reasons have been eliminated, could be due to some sort of syndrome. They rule out all of the more life threatening ones pretty early with EKGs and keeping an eye on his kidneys, but then the path goes to genetics and that is a time consuming, step-by-step process. Because insurance doesn’t want to pay for hundreds of needless tests, they have you test in groups of genetics, from most likely to least likey. In their defense, our insurance has been fantastic and it does make sense to test that way. The first two rounds for us (which take at least 2 months each to get results from) have all come back negative. But as our doctor explained, even though these are the “most common” genetics to cause deafness, it still only accounts for a 25% of all genetic causes- some of which they haven’t even identified the gene for yet, so it could be genetic and the results still come back negative.

The major group of genetics they are testing Finn for right now is for the genetic marker that causes Usher’s Syndrome (click on it to learn more). Some kids who are born profoundly deaf and then show delays in areas, such as walking and other motor delays, fit into the descriptions of a kid who has Ushers. It is a genetic condition in which you are born deaf and around adolescence, you start losing your sight and by adulthood you will have a varying degrees of sight loss, but almost always at least legally blind.

Ok deep breath. Scary stuff to think about. We won’t get any news until the end of October at the earliest and so we are both keeping ourselves in check trying not to dwell on that prospect too much and spend weeks with unnecessary anxiety.

So what do we do until then? We bump up Finn’s therapies and get him walking (he will have at least 7 weekly therapies, 4 of which at BCH in Lexington); we schedule an eye exam and something called an ERG, in which Finn will be sedated and contacts with electrodes will be put on his eyes to test his retina; we continue his speech & language- with an extra fervor knowing that, in time his hearing could be absolutely vital to him; and, lastly, we lean on each other and our friends and our family for love and support and laughter. That last one can be so easily dismissed, but it might be most important of all.

 

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3 Responses to #19 (Assessment Results & Waiting)

  1. Liz says:

    Katie,

    I am an audiology graduate student, who had the privilege of working with Finn’s very first audiologist over the summer. She referred me to your blog, as a way of learning through your writing what families go through post-diagnosis. I want to thank you for your honesty and candor in writing your blog – for me, it is truly an educational experience that can’t be learned in the classroom, or even in the hospital. But, it is stories like yours that create a compassionate & thorough professional (who can consider the patients and families and their lives outside of the clinic). Stories like yours are also a strong and welcome reminder of why choosing to spend 8+ years in higher education is so worthwhile (that reminder can sometimes get lost in the slog of graduate school)! So thank you, thank you, thank you for this blog. As an aside, I have a classmate pursuing her Ph.D. in audiology, with bilateral CIs & Usher’s syndrome. She is very successful and the extensive speech-language therapy she had as a child was all worth it – she is quite articulate and her quirky personality shines through! I hope that my comment can provide YOU with hope – Finn can be anything he wants to be! My friend just happens to be a prime example. Good luck to you on your journey, and thank you again for this blog.

    • katielyn22 says:

      Thank you so much for your comment. I’m glad I can offer a perspective that is valuable in the field. Also, I appreciate you sharing about your friend. It helps to be able to know that regardless of his diagnosis, he won’t be limited if we keep working hard!

  2. Jeanne Nadeau says:

    I apologise that I have been unable to comment on #19. I have been in shock and dealing with stuff here. I think of you all daily and hope for the best whatever the test shows. I am focussing on what I want as much as I can and hope you feel the loving vibes we are sending your way. You guys are great and thank you for sharing this experience this way.
    Love and hugs, Jeanne and Sue

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