One neat, little package

I’ve been meaning to write and update you on our follow up visit with Dr. M, the developmental optometrist.  But, that stomach bug I was loving last week turned into a full-fledged family affair.  I wasn’t loving it on days 4-6.  Saw that coming, right?  Yeah, me too.  So…I’ve been busy.

Anyway we did meet Dr. M and it was another great meeting.  She summed our daughter up in one neat, little package.  There were many times throughout the meeting when I was so wishing I had thought to record the meeting.  Do people do that at doctor’s visits?  I feel like I really need to start doing that.  I’m totally listening to everything, but my head starts to drift to the past and future and making sense of it all.  I drift to the mama stuff.  The heart.  The heartache.  And when I do that, I’m missing important details.  Usually having Dave at the visits helps because he’s a much better listener to the doctors.  He doesn’t put (as much) emotion into his listening like I do.  Unfortunately while Dave did come to the visit, he was still suffering from the lingering effects of the stomach bug and it wasn’t easy for him to be his usual, attuned self.

What we did hear was that Kelsey’s current level of development is delayed and can be “easily” explained because of her in utero stroke and hydrocephalus.  The ventricles in her brain were dilated, and not equally so, in the womb.  The right ventricle was larger than the left.  Remember, her right eye is her “bad” eye.  The vision in her left eye is perfect.  Her right eye is dramatically worse. Also, if you look at her move, her right leg is definitely weaker than her left leg.  She lets it drag up to standing, versus placing it firmly or naturally in place.  I put “easily” in quotes because what Dr. M explained makes total sense…now.  And if you really look through it all and think back, it makes a lot of sense.  It fits.  It’s a reason.

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Her right leg is often out of alignment, which is making it difficult for her to move “correctly.”

It may make sense, but it is so reassuring to have a doctor tell us this.  No one else told us this.  So when we kept bringing Kelsey to the ER, to the neurosurgeon, to the ophthalmologist, the pediatrician, the orthopedist, and to her therapists no one could validate that something was wrong.  No one took the time to explain all this.  We kept asking why Kelsey was so irritable?  Why wasn’t she developing?  Why!?  Most of the doctors would barely even acknowledge the irritability.  They would acknowledge the obvious delays more readily, but not explain much else about them or what to do besides physical, occupational, and speech therapy.  Check, check and check…but not much growth has been seen in 9 months despite our some times thrice (or four…quadice? fource? force?) weekly therapy sessions.

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This week’s first of three therapy appointments. Looking, thankfully, very happy.  Sit and read my favorite book? Sure thing, Lady!

There was one part of the visit that brought me to tears.  Dr. M explained that the world according to Kelsey is scary and it’s been very hard.  You can read more about what she’s been through here. Until strabismus surgery in April 2014, not too much was required of her.  She was a baby.  But around the time when she was supposed to start transferring into toddlerhood, we changed the way she saw the world by “fixing” her eyes.  So she started over again but hadn’t had a chance to learn the skills that are now delayed to begin with.  She said she’s confused, scared, underdeveloped and the world she sees does not comfort her.  This is tough thing to hear for a mom who tries so hard to make everyone happy.  Boo.

BUT, we did learn some positive news.  We learned that she does NOT have amblyopia (a vision development disorder in which an eye fails to achieve normal visual acuity) anymore!  This is a great cause for celebration.  I write that because I need to remind myself of this.  When there are so many medical and developmental obstacles to overcome with your child, sometimes it’s very hard to remember to celebrate the milestones or hurdles that are crossed.

Sometimes it is a wonderful cause for celebration.  When a two year old says his first word, “hi” for the first time, it’s the most precious word you have ever heard.  When a near three year old is able to climb a flight of stairs, it’s simply amazing.  But when you’re in the thick of daily struggles like we are now, it’s easy to overlook how great it is that what was a diagnosis, is no longer one.  I guess!???  It’s hard for me to let go of diagnoses too.  I’m so glad to see them go but I’m not quite convinced they are gone forever.  I’m scorned, I guess you could say.

So back to positive news.  No amblyopia.  She’s using BOTH eyes to see.  The left to see far and the right to see near.  Can you imagine?!  Also, Dr. M reiterated that the strabismus (crossing) surgery worked.  Her eyes aren’t crossing!  Huge!  But, of course, I’m still hesitant and worried about regression. These kids have turned me into one Negative Nelly.  Dave is a quintessential optimist (LUCKILY)!  I am a self-described pessimist but through research, the optimist calls me a pragmatist.  I like that better, anyway.  See?  He sees the bright side of E.V.E.R.Y.T.H.I.N.G.  We are a good match.

Again!  Digression to negative.  I’m sorry.  No more crossing!  No more lazy eye!  Basically everything we’ve done to this point has not been futile.  It all worked!  And that is wonderful because throughout all this I was beginning to think that these last 9-10 months were wasted.  On the wrong path of patching and surgery that only seemed to produce a miserable toddler.  But apparently that all worked.  That’s very good.

Now, Dr. M wants Kelsey to use both of her eyes to see near and far…together in binocular vision like most of the world uses.  In addition to a new prescription for her glasses, today the doc also painted a clear nail polish-like substance on the inner corners of Kelsey’s glasses.  It’s purpose is to reduce any double vision that she might be having.  This will also encourage her to use her peripheral vision muscles more.  When we went in today to have this substance applied, Dr. M was very pleased with how well Kels was using both eyes equally to look around.  I was less pleased with Kelsey’s whining, cup and snack tossing, and flailing of her body against the toys I was offering.  This all amongst a packed waiting room.  “Yup, Dr. M!  I’m pretty pleased with what I see too!!” <Insert eye roll>

She’s a ‘neat’, little package, my Kelsey.  Full of love and snuggles and a laugh or two, here-and-there one minute, and cries and whines and clingyness the next…and the next…and the next.  And while this may sound like every American Toddler Next Door, she’s not.  There is something this baby is trying to tell me.  I will keep trying to figure it out.  Because even though I’m a pessimist, I don’t give up hope very easily.

10 thoughts on “One neat, little package

  1. Awesome, post, Kim- K- love it, and you…. you were given these kids for a reason… because you never give up :). And I don’t think you’re all that much of a pessimist either! You sure haven’t let a lot get you down! Love you so and am so grateful for the good news on Kels!

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  2. Not sure how you’re able to remember all of what is covered during your visits with Dr. M, much less simplify for all to understand. It brings tears to my eyes and so much hope to my heart that you
    (we) now have help for dear,
    sweet Kelsey.

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  3. Dear Kim,
    I love reading your posts because they reflect the reality and honesty of a loving, caring mother. I speak for many when I say you are such an inspiration to me!!! You have had to face many challenges with your two beautiful children and in my eyes you are one amazing woman and mother. I am so glad that you have found Dr. M and I pray that she will help your precious little Kelsey have an easier path as she follows this path of life.

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  4. What a great post. The insight you give about the difficulty of actually giving away former problems is brilliant. It is often the case and rarely verbalized. I see it as a transition. I discovered after many years that I look out of one eye for distance and the other for near. I’m glad you are getting all the deserved correction but just want to say that it didn’t cause a problem until I got glasses and my eyes felt weird until I adjusted. Only saying because the human body is so marvelous and adaptable. Keep posting!!

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