#15 (Pre-Op appt. /Post-Op Therapy)

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Finnegan Daniel, 10 months old, 1 week pre-CI surgery. At Boston Children’s Hospital for his Pre-op appointment.

FOUR DAYS… four days until Finnegan has his Cochlear Implant surgery. We have been anticipating this day for just about Finn’s entire life and it’s incredible to look back over the months of appointments, research, & decisions and know that it will come to fruition this week. The surgery is scheduled for Thursday -we won’t know the time until Wednesday afternoon, but they said it could be as early as 7a.m. so we are looking at a 4a.m. departure time from Casa de Moriarty.

 

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Enjoying some Au Bon Pain breakfast in the lobby of BCH before our appointments.

The pre-operation appointment went really well on Thursday. It was sort of like a dry run getting packed up and into Boston that morning- though probably only a tenth of the apprehension as we’ll have next Thursday- but it went well, we didn’t have too many questions for them or find out anything really new, but I suppose that is a good thing at this stage.

Outside BCH

Outside BCH

Loving the fish tank in the waiting room.

Loving the fish tank in the waiting room.

Such a stuffed animal baby. Loves anything soft : )

Such a stuffed animal baby. Loves anything soft : )

We brought Kayla with us so that she could have an opportunity to meet the doctors and nurses who will take care of Finn and try to calm some of the worries she has had, but once we got there it was all about the café, fish tanks, and making friends. I do think it will be nice for her to be able to picture the bright, cheerful hospital and remember the staff who treated her so special come Thursday when Dan and Finn and I are all staying over the hospital and she is back home.

Fish face!

Fish face!

Children's staff made her feel special all day, topping it off with this super soft Police Cat to take home.

Children’s staff made her feel special all day, topping it off with this super soft Police Cat to take home.

As much as the surgery is the central focus for us, Finn has a lot of other things going on for him that have divided our attention a bit. I wrote in the last post about the concerns about some of his developmental delays and mentioned that a plan was being formed to address these things. Since that post, we certainly have added to his regimen. On Mondays he continues to go to TLC- school for the deaf. Tuesday through Friday, in addition to the developmental specialist for E.I. coming once a week, he now has weekly visits from a general Speech Therapist, an AVT (AVeD) specialist, and a physical therapist. The speech he needs for obvious reasons, but after his evaluation from E.I. we decided we needed to put more focus on his physical (gross motor) development. The specialists aren’t really sure why Finn is a bit delayed in this area, but they’ve recommended we get a consultation with a neurologist. He may just have hypotonia (low muscle tone), which would account for his difficulty in trying to sit up and keeping his neck/head controlled. The physical therapist has also noticed that he tends to keep his head at a tilt to the left. This could be because of an issue with his neurons not communicating with a group of muscles (that is a complete non-medical way of putting what I understood the PT to be saying). There is a list a mile long of what could be the issue, so this Tuesday we have a consultation at BCH so we can see which way to go from there. Depending on the results of that, we could be adding Occupational Therapy or another specialist to his weekly “team”.

There is an OT who works specifically with kids who get Cochlear Implants, so I called her after booking our Neuro appointment to ask if Finn did get referred to OT, would we go straight to her or to general OT at BCH. She gave me some much-needed perspective. She said that most of the kids she sees at Finn’s age get referred to her because their development is so extremely delayed they need things like neck cushions and other drastic interventions to help them function. In a way that I find so very common of BCH doctors (& all of their staff really) she made me feel justified in my concern for Finn, she said she was proud of me for advocating for him in such a proactive way, all the while making me realize that his degree of delay is still somewhat minor when you open up the spectrum. Yeah, if you are going by “average” milestone markers, he is delayed in SOME areas, but he is ahead in some cognitive areas and she just went on to say how everything is relative.

I had never met or talked to this woman in my life before that phone conversation, yet she gave up 20 minutes of her time to call and  chat with me about my son and my worries. And at the end of it, it was pretty clear that she wouldn’t be the specialist who Finn sees (because of the types of cases she normally has), but she made sure to mention that she’d follow up with Neuro after our appointment on Tuesday and to make sure I called her if I had any questions. She could have been just as pleasant and told me who I should call, but no, she connected to me personally and made me feel like I just gained another ally for my son. I’m actually tearing up writing this because I do not know that I would be handling things very well if I didn’t have this hospital, this FAMILY, in our life.

As I mentioned before, Finn had an evaluation recently with E.I. and we set up goals for him for speech, ASL, and motor skill development. Each specialist created with us his/her own specific specialty’s goal(s) and told us how they would implement them and how we could help his progress by doing things with him daily. Dan and I being just a TINY bit psychotic about wanting to do all we can on our end, took notes and made sure we got specific answers to what and how often we should be doing things (side note: I have found in my experience with E.I. that they must have to tread lightly about what they ask of parents because they seem to wait until we press for info or strategies before giving us a more active role. This is helpful to know for any parents who are going through E.I. for services. It’s not a matter of them not wanting to divulge, I’m guessing it’s more of a thing where they don’t want to overwhelm parents who might already be struggling).

Dan has put together a Ling Sounds bag and we dedicated the closet door to holding therapy info and his daily routine/check list & monthly schedule (this may be the most organized we’ve ever been).

Finn's door.

Finn’s door.

Daily checklist of therapies/activities and other quick references.

Daily checklist of therapies/activities and other quick references.

Finn gets his own calendar, lucky boy.

Finn gets his own calendar, lucky boy.

It’s a little overwhelming to look at and sometimes it seems impossible to fit all of that stuff in on top of regular life with a baby, 4 year old, & two full-time working parents who work opposite shifts. But I know since we’ve started it, we have already seen major jumps in Finn’s total development. I don’t know if it’s the therapy, the fact that he doesn’t have that damn heavy helmet on anymore, or just a natural growth/developmental burst, but in the last 3 weeks Finn has begun to stabilize his head movements, he has developed at least 3 new sounds by (we think) mimicking our lip movement (this is HUGE for a profoundly deaf kid), his visual attentiveness to sign language is astonishing, and today he had his first crawling movement. These results give us the fuel we need in those moments when it gets tiring.

Eating his banana and Cheerios like a big boy (something he wasn't doing just a couple weeks ago!)

Eating his banana and Cheerios like a big boy (something he wasn’t doing just a couple weeks ago!)

Also, a lot of the “therapies” he gets are strategies that are presented through play and reading so we just incorporate that into our life in a (somewhat) natural way. Kayla LOVES practicing the Ling sounds with him –she always asks me to get the bag down so she can make the fun noises for him and see him react. My favorite activity is that we have to read 10 simple books a day that have a similar topic. We read the same 10 books for a week or so, which will help him with phonological awareness, vocabulary, and other speech skills. That being said, if there is anyone out there whose kids are growing out of their baby books and you are looking for an excuse to clear out some space, we’d be happy to take them off your hands. We are specifically looking for: nursery rhyme books, simple transportation (cars, trucks, etc.), simple books about animals, and touch & feel books.

Ling Sounds Speech Therapy with Dr. Kayla

 

So, we actually have two big days this week, though, obviously the surgery overshadows everything, but the Neuro appointment will be big in its own way because the results of that will point us in some sort of direction (and hopefully it will put at ease any of the “scarier” things that keep me up at 2a.m.). I’m sure after Tuesday it will be hard to focus on anything else except for the surgery. The hospital assures us that Finn will have a speedy recovery time, but he seems like a pretty tough kid so far so I expect he’ll be back to his smiley self pretty quickly.

In the meantime, I’m just going to try to put all my focus on having fun with these two crazy kids : )

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One Response to #15 (Pre-Op appt. /Post-Op Therapy)

  1. jeannie nadea says:

    Thanks a million Katie. I am keeping Thursday free for psychic support to all of you and the staff at BCH who are involved in his care and treatment. He looks so much older and little boyish now. He also has the best smile. Know we are/all rooting for you. Love and hugs,
    Auntie Jeannie

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