#14 (Developmental Concerns, CT Scan)

Happy 2014 everyone! I’m very excited to have recently heard from so many new people who are following HearsToFinn and especially happy to have been able to help anyone who is looking for resources or just a relatable story. If you are new to this blog, it’s pretty straight forward with the entries in numerical/chronological order so if you are at the beginning of your journey and looking for information, you can follow right along with the steps of our journey from post #1.

I feel like each post has its own theme to it and looking back, the majority seem pretty positive. I have to give a disclaimer here that I’m not feeling the usual positive Katie lately. I’m feeling much more like frantic, sub-standard Katie. I use this blog to share our story and as an outlet, but I’m wary of writing too many things that might make people feel like they need to cheer me up or re-affirm what a good parent I am. I feel so awkward whenever I post something on Facebook about work or the kids and I get back a response saying, “You are such a great teacher/mom/etc!” Because then I feel like people are going to think I’m writing it to fish for compliments. Let me say this right out: Today’s post is going to contain a lot of insecurities I’m feeling about myself, but I do it to get it off my chest and to possibly help others relate if they’re facing similar problems.

There’s been ups and downs for our whole family since Finn’s diagnosis, but I’m personally feeling worse right now than maybe at any other point. As much as first learning about Finn’s hearing loss was a shocking time, I was so caught up in the whirlwind of future plans that I felt productive and because of that, I never felt like I went through that “grieving period” that so many parents talk about. Maybe that’s what’s happening to me now. Is it that my emotions have finally caught up with me or are my newly found stresses and worries legitimate? Could it be both?

I can’t even pinpoint my biggest concern for Finn right now. We have the surgery date looming over us like a ticking time bomb, not knowing how the surgery will go and what activation will be like, how he will react to sound, how much hearing he’ll gain; SO much uncertainty there. Almost more worrisome for me though are Finn’s other areas of development. I’ve known since he was one month old he would be delayed in speech (duh, he is deaf), but I honestly did not really care. Communication is what was important for me and just because he’d use his hands and not his voice at first doesn’t mean he wouldn’t be able to communicate. Now though I am getting worried about a lot of areas of his progress, and not just the ones I originally thought he’d struggle with developing.

Finn is exactly 9.5 months old today. He gets assessed by multiple professionals on a regular basis. None of the professionals have expressed any alarming concern, but when we talk about his progress, there are almost always things he needs to improve on. In a couple posts from last fall/early December I was pretty excited about the fact that cognitively he seemed to be progressing quickly, recognizing the sign for milk, attempting to sign it himself. That was really thrilling to watch him start and I was excitedly waiting for him to start picking up and recognizing more signs. As far as I can tell, this hasn’t really happened. I have joined so many groups and become part of so many communities relating to babies with hearing loss and I read about other babies in the same situation as Finn and how they start signing at 6, 7, 8 months old and once they start, their language snowballs; just like when hearing babies start with a couple words and then has a word explosion and then goes on to sentences. Even if I “toss out all those milestone lists!” and keep in mind that “each baby does things in his own time” like I’ve been told, just focusing on his own personal progress isn’t making me feel better.

Ok, but maybe you’re saying, yes, but remember, it’s a lot harder for him to develop skills because he is deaf. Well I refute that because 1, deafness has nothing to do with cognitive ability (ask ANY deaf person and one of the quotes they share all the time is “Deaf does not mean dumb!”) and, 2, he was showing progress in that before. So now I’m racked with guilt that maybe it’s something on my end. Maybe I’m not doing enough for him to be able to communicate. I’m signing with him as much as possible, I’m picking up more and more signs every day, but maybe there is something else I should be doing?

Then I think about his other areas of development. He still hasn’t gained full neck-control, still not sitting up unsupported for more than a few seconds, still only getting up on all fours and rocking, not crawling. He prefers to get across the room by rolling and still would much rather just lie on his back when he is relaxing and not be bothered (this being the main reason for his Plagiocephaly –flat head syndrome- and the need for his Band Helmet). This is with months of daily Yoga and Bumbo sitting.

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I look at this to remind myself he CAN sit up, even if it’s only a few seconds : )

So on top of more worries that I’m not doing enough on my end to help him make progress, another path my wandering mind likes to take is: maybe there’s something wrong? Maybe, even with all the specialists, doctors, professionals, who see him on a regular basis, they’ve missed something. We were completely blindsided by learning that Finn was deaf –not having any deaf family members and having a perfectly hearing older daughter, so I think there is always this lingering feeling that it could happen again. We could be told that there is something else going on with Finn. We still don’t know why he is deaf (genetic testing isn’t back yet and even then, we might not get definitive results), what if we are missing something?? Or what if I’m just completely off base and just reading into things- having some sort of PTSD because I’m terrified we’ll be blindsided again??

I can’t help but remember one of our professionals telling us early on that deaf babies “have more of a chance of being delayed, but that doesn’t mean that they have to be delayed.” I took this as a personal challenge: Ok, my baby won’t be delayed! It might be hard work, but I’ll be damned if I’m one of those parents who sits back like a fatalist and accepts that there kid just won’t be up to par. How many times have I had parents of students with learning disabilities say some version of, “he’s just never going to be able to do what the other kids can do.” No way! My kid will be right on track no matter what. I won’t let him fall behind!!! Except, in that moment, I neglected to think of how I would handle it if he wasn’t “on track”. I have always prided myself with a sense of tenacity about my goals. Whether it be sports, college, or my career, if there was something I wanted to accomplish, I have always done whatever it takes to get it done. That’s exactly how I have been approaching Finn’s care (and how I’ve dealt with any set backs we’ve had with Kayla). So the fact that -in my mind at least- I am not doing enough to help Finn reach these milestones, makes me feel like a massive failure to him.

I know it is not as black and white as all that, but that is the weight I am walking around with the past couple of weeks. I go to work and, like a lot of teachers right now, feel like my hands are getting more and more tightly tied to actually teach and help the kids in front of us; making us feel like we can’t do our jobs the way we think is best for our kids because in order to keep our jobs we need to appease some seemingly arbitrary standards that don’t match up to the kid’s needs. Then, I come home and feel like I can’t do enough for my own son- and that with all the focus on him and his activities, my amazing, independent, smart daughter is constantly being put to the side or receiving a harsher-than-I-meant-it comment over some small incident because I’m stressed to my limits and running on an average of 5 hours of sleep a night because Finn is still struggling to sleep through the night, sometimes waking up for over an hour crying with no way to communicate his needs to me because I have not given him enough tools to be able to do that yet!!!

I confided in a colleague the other day and said that, “Right now, my life feels like a swirl of stress that has no foreseeable end. I feel like I’m cracking at the seems, but I’m not allowed to break.”

On that depressing note, I am reminded of a day in 5th grade. We had this math word problem up on the wall of the classroom. It was a visual math problem. It was a drawing of a snail going up a well. The problem went something like “There is a well X feet deep and this snail climbs up 3 feet every day, but each night when he sleeps, he slips 2 feet back down; How many days will it take him to reach the top?” I’ve actually used this random math problem as an analogy a few times in my life and right now feels like an appropriate time. I feel like that damn snail, giving it everything I have to move Finn forward, but every advance we make is countered by a setback.

I supposed if I slip back into my positive self for a moment I have to remember that the snail will eventually make it to the top. Rounding out the analogy, Finn will be OK. He is a happy baby for the most part and we’ll just have to start forming another game-plan or adding more strategies.

Actually, in the midst of writing this entry, our awesome Early Intervention teacher got in touch with me via e-mail (I may have sent a rather frantic sounding e-mail earlier today) with some solid actions we can take to beef up Finn’s progress, including adding a weekly Physical Therapist, SLP, and AVT (on top of her services and his TLC program). She also gave me some great ideas like making photo albums of important/relevant people, places, & toys in Finn’s life to go over with him so that he can start connecting the pictures with the signs we do. Also, making one specifically to prep him for the surgery, which I would never have even thought of!

She also responded to my fears about his cognitive delay/regression (starting signs last fall, but now seeming to not be signing at all, instead of gaining signs). Honestly, out of everything I have expressed tonight, his cognitive development worries me the most- if he was a late crawler, walker, etc. I wouldn’t be too worried about that, but there is something particularly stomach-churning thinking that your child’s brain could possibly not be developing age-appropriately.  I’d like to share her response with you all because, if your child is going through anything similar (deaf or hearing), it might be a relief to you like it was to me:

“Cognitive skills at this age are led by what his body can or can’t do as he is learning through play. If his play skills are behind due to his motor skills being behind then his Cognitive skills will be behind. Also language leads Cognition so due to his access at this time then often we see a delay until play and language catch up. I assure you he will catch up. Remember we talked about this a while back. There will be times he is behind but expect he will be adjusted and age level at preschool considering there is nothing else going on.”

OK, so that was kind of cool. In the time since I started writing this entry and now finishing it, I have actually taken you all with me through a range of emotions, sort of as I experienced them. I hope that it can help others and also that it doesn’t make me seem like too much of the crazy person I feel I am. ; )

As far as updates go, Finn had a CT Scan on December 23rd that confirmed what the MRI and all the other tests have said – which is that structurally, his ears looks perfect. That would’ve been the only thing left to cause any issues with the upcoming CI surgery, but we can check that off the list. He again did great with anesthesia and was smiling within minutes. It was pretty surreal for Dan and me. Finn had to fast for hours. We had to be out of the house by 4:30a.m. Finn would be going under anesthesia and getting another vital test done, but at some point as we were leaving I said to Dan, “Isn’t it weird just how routine this felt?” Compared to the MRI back in July and other visits, the fear and stress levels were much, much lower. That’s probably a combination of the trust we’ve put in Children’s, the knowledge that we had having experienced the MRI (anesthesia, test results, etc.) and the fact that in reality, this is nothing compared to what we are going to be facing in 27 days.

Drinking within minutes of waking up (a very good sign)

Drinking within minutes of waking up (a very good sign)

 

Within 15 minutes he was happy as a clam in daddy's lap :)

Within 15 minutes he was happy as a clam in daddy’s lap 🙂

 

I’ve talked to a few people whose children had to have surgery when they were younger and with all of their stories there was something they found out about or there was an accident and the surgeries were either immediate or within days. I think, in a way, knowing this was coming for months has given an unhealthy amount of time to worry about it. Every single parent has told us that it is a traumatizing experience. Almost verbatim they’ve said that we will at some point in that 24 hours question our decision, but every one of them also reassured us that they, absolutely, 1000% would do it over again if given the choice.

I leave you tonight with something I need: INSPIRATION! I am going to make a concerted effort to spend this weekend creating some positive energy in my life. I will take advantage of the “warm” weather and get myself and my family out into the woods somehow (my happy place)! And I vow that I will take a cue from the people in the pictures and videos below and focus on what I can control and let go of what I can’t! And if I make a promise on the Internet, I have to stick to it, right?

My source of daily inspiration:

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For career day at school, Kayla wasn’t just a doctor, she declared herself an OLI-OLOGIST! (Audiologist!) And someday she just might be.

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Seriously, they adore each other in the most heart-warming way.

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Tubby time is probably the best part of the day for all of us. Smiles all around!

 

This guy, Derrick Coleman, you’ll see him play this Sunday and maybe even get to see his goose-bump inducing commercial about people telling him his whole life what he couldn’t do because he was deaf and now he’ll be playing in the SUPERBOWL!

 

 

Oddly enough, this woman’s last name is also Coleman- no relation to the Football player haha- This is Rachel Coleman from the Signing Time videos. If that is the only place you know her from, this presentation will enlighten you on the reasons the DVDs cam to be and has one of the most relatable “finding out the news” stories. It is an hour long video, but I highly suggest it for any parent of a child with a disability. Truly inspiring!

Another, much shorter video featuring Rachel Coleman. Some great info for parents who might seek CIs, but also use ASL:

 

That’s all for now! Next up: Pre-op appointments!!!!!!!!

 

 

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4 Responses to #14 (Developmental Concerns, CT Scan)

  1. Cassie says:

    Beautifully written. It is so easy for us to put so much weight on our shoulders. When Peyton (3rd baby) wasn’t talking at two (seriously three words) I thought am I not helping her enough…practicing speech (they all have done speech so did my brother and I). All of a sudden in the last few weeks she is having her word explosion! For Austin it was before two, Carter one word at a time starting at four months…and he always just slowly added words….and Tyler is saying a few at one. Four babies I realize there are only averages because there are also extremes on both ends sometimes with an outlier haha. All of them walked crazy early…Tyler still is only taking a few steps at a year….am I not encouraging him as much? He just likes to fast crawl! On a serious side of my parenting…carter has a disease called Mastocytosis. He had surgery on May 7th, 2013 to remove a mastocytoma and biopsy it…since then he has had some more show up. He had had it since he was two months and it had been misdiagnosed on what it was, they looked at me kind of crazy when I told them it caused him to be symptomatic to things and that it reacted to allergies they would almost ignore this. anyhow one day it became very reactive and I called this infectious disease doctor who I know and love and I got him in and by the end of the day he said this could be a mastocytoma based on what you said today in the office he said he couldn’t get it out of his mind and he just knew it must have been misdiagnosed. When I looked it up immediately I knew that’s exactly what it was and we had surgery the next week so fast! From then on we had a plan we had steps in which we are taking I didn’t have time to be upset over the fact it’s a very rare disease I was so focused on the different steps that we needed to take. and all the steps that were to follow just kind of had me not sitting back and thinking about what we were going through at that moment. Then they showed back up and now there’s more steps to do like the genetic testing, tryptase tests, mri……all of a sudden we are in a waiting standstill and I am going through that same thing. Am i doing enough? I have been his biggest advocate always on top of things just like how you are which is one of the reasons why you inspire me because I see another mom doing everything possible for her son and I love that. It makes me feel like I know you so well because I see so much of me in you and vice versa so when you made this blog today it touched me so much because I go through similar emotions. When we have time to think all of a sudden some of this grief hits or more questions of am I doing enough, and am I doing enough fast enough. we go to the most amazing allergist pulmonologist doctor and one of the things he told the geneticist was that it is fine, we don’t have to rush on the MRI Cassie is so on top of her children she would be able to tell if something was going on faster than any MRI ever could. at first I took it as a compliment then all of a sudden more mastocytoma showedbup….clearly I didn’t cause this nor could anyone predict it, but as a parent I found myself saying huh maybe I’m not on top of this as much as I thought I was or they thought I was, maybe we should be rushing the MRI…it is happening soon, it will tell us if he also has systemic (internal tumors rarer in children) mastocytosis. anyways I won’t go into all the details (like I haven’t already haha) but my point is I get your range of emotions and it’s important to know you are your child biggest advocate and you’re inspiring! I love reading your blogs, I think your children are blessed to have parents like the both of you. As well as a lot of times I can relate to you. And I love your photos btw…you can see the love in their eyes….such happy children! Remember this too shall pass 🙂

  2. jeannie nadeau says:

    Thanks Katie. Hard to write, I imagine, and yet what you describe makes sense to me. Please remind me of the date of Finn’s op. Always sending you wishes for you to get all you need to support Finn in his journey. Since working with many parents over the years, I have come to believe parenting is the toughest job in the world. So I am comforted with your account of the support you are getting from most of the professionals you talk about. Trust yourself, whether you are feeling OK or worried and always ask for help. This advice has worked for me and so I pass it on.
    Love and hugs across the miles.
    Jeannie

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