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.

A glimmer of hope

Yesterday we met with the developmental optician I told you about.  It was everything we wanted from this doctor (any doctor!!) and more!

Dr. M was calm, intelligent and intuitive.  Immediately she was perplexed as to how Kelsey was near-sighted.  In my reading, I’ve also found that most amblyopic (lazy eye) kiddos are far sighted.  She was taken aback by the extreme prescription of Kelsey’s glasses (the right lens).  If I look through it, without my near-sighted contact lenses in, I cannot see.  The prescription is so intense.

Dr. M noticed quickly that Kelsey was using her right eye to focus, and that the alignment of her eyes was very good.  The surgery had fixed the strabismus.  We knew our pediatric ophthalmologist (PO) had also been impressed with the alignment at our last visit.  She was impressed that Kels was really using that right eye.  She immediately wondered if the Rx was too strong and should be reduced.  Interesting!!  In November, our PO was very concerned that the vision in the right eye was so poor and had decreased significantly.  I certainly didn’t think reducing the Rx was what we’d be told to do, but I’m not unhappy about it!

Jumping ahead of myself a bit, the doctor told us that everything we had done up until this point was right.  It was right to have the surgery (although she would have preferred we do some vision exercises prior to the surgery).  It was right to patch.  The Rx in her glasses was correct when they were prescribed.  The patching worked.  While we aren’t thrilled with the way our ophthalmologist handled her care as a whole child, it does seem that all the right things were done…in his office.  That’s not to say that so much more could have been said, advised, explained and referred elsewhere.

We didn’t have to explain much about Kelsey or her history to Dr. M.  She seemed to understand a lot just by looking at Kelsey play and interact.  Dr. M quickly had a handle on her motor skills and development.  And she explained the connections of vision to those skills, speech and language, and behavior…all of which was A) So fascinating and B) Exactly what we wanted to hear.

Like we already knew, Kelsey is seeing the world with one eye at a time.  But, the good news is she’s actually using the right eye quite a bit…not ignoring it or having a “lazy” eye. Dave and I could tell that this was true in the past few weeks.  She was interacting more with her eyes, looking at things she hadn’t looked at before, and was clearly using that eye to see more than she had in months prior.  We attributed this to the use of the Atropine drops in her good eye, which acted as an eye patch that Kelsey could not remove.

We asked about Kelsey’s irritable mood and behavior pretty early on in the visit.  At first, I was a tad discouraged when Dr. M said that her behavior was “typical, age-appropriate behavior” in reference to her clinging, whining and attachment to Dave and I, and any adult that could pick her up, really.  I spoke up, though, and said that I didn’t agree.  This was not “our first rodeo” to quote a good friend.  Not only do we have another child, but we have another child with special needs, developmental delays, and major reasons to be irritable, clingy, and moody.  And he’s not.  While he had his fussy period from 4-12 weeks old (what baby doesn’t!?!), he was generally happy for most of his short life…especially after he got those copper shots (another post for another day).  At least at home, in safe and familiar places he was content.  Kelsey is not.

I’m also a teacher.  I spent seven years getting two degrees that focused on children.  Not babies and toddlers, per say, but children.  I’ve taught for ten years and I have plenty of experience with a full array of ages and abilities of children.  I have nieces and nephews.  And I have a billion friends with fifty billion kids.  She is not the same.  She is different.  She doesn’t play the same.  She doesn’t interact the same.  Something is wrong.  So telling me that she is “typical” doesn’t help.  I want you to confirm that there is something wrong.

And then she did.  Dr. M said in a matter-of-fact way that Kelsey was responding in a typical and age-appropriate way, for her disability.  Basically, this is what I interpreted.  She’s smart.  You can tell it’s in there.  But…she was five weeks early and had five surgeries before she was one.  Four brain.  One eye.  Side note-That same “rodeo” friend shared that 80-90% of learning is gained through vision!  Isn’t that amazing??  And vision is all about the brain.  Sight is reading the letters 20 feet away, but vision is how your eyes send a message to your brain and how your brain interprets what you saw.  Those two organs connect on so many levels, and then you develop.  You grow.

Dr. M basically went on to say that Kelsey basically has an achievement gap.  In these days of high-stakes testing, I think we can all relate.  She is at an age where she should be doing all kinds of things.  And she can feel it.  She wants to walk.  Even more so, she is DESPERATE to talk.  Even to use sign language or gesture.  To tell me that she HATES when I cut her bananas in half-moon shapes and she’d actually prefer the whole damn thing, thank you very much! Or that she does not want to see that stinking ladybug toy she liked when she was 9 months for the 80th time today.  But her eyes and her brain and her body can’t do it…yet.  THEN, she said that the language centers of the brain are in the left hemisphere.  Which is accessed through the right eye.  Or something to this effect.  Dave is the listener at doctor visits.  I don’t process as well because I’m too busy worrying about the future, stressing about the delay, giving Kelsey her favorite toy and drink and snack and lovey and pacifier to keep her happy so we can talk. But did you get that? Despite my digression? The speech and language centers of the brain are so heavily connected to the right eye!!!  Her “BAD” eye!!!  So no wonder she’s delayed in this area!  Hallelujah!!!  Knowing is so-much-more-than half the battle!!!!!

Even more fascinating and relieving for an insomnia causing concern is related to her gross motor functioning.  Okay, so it wasn’t as clear or easy to see why she’s not walking…probably because her gross-motor milestones aren’t as delayed as the rest of the lot.  She’s crawling, pulling to stand and beginning to cruise and climb steps. BUT, she did reassure me about a huge fear of a recent tick of Kelsey’s.  For the last month or so, she’s been having these little startles.  Jumps.  Hiccups.  I worried the worst possible scenario was taking place.  I worried about seizures.  We emailed our neurosurgeon’s office who are so amazing with contact, questions, answers and help.  They told us it wasn’t shunt related and to call our pediatrician.  We went to our pediatrician pretty quickly after that.  He witnessed the startle, and coupled with the fact that they were new, happen when she’s tired, are infrequent with no recovery period or pain, he told us not to worry.  They were benign myocolonic jerks.  But, I wasn’t completely reassured.  I wanted to know why.  And I worried it was another problem to add to Kelsey’s list.  So, while frightened of the worst, I asked Dr. M if this problem could be related to her vision.  The developmental optician (not the neurosurgeon or pediatrician) told us that her motor skills, and lack there of had a complete correlation to these jerks.  Her body, brain, eyes, and skills were off.  Not functioning as they should.  So these jerks were no surprise…a motor relief or outlet for her brain…and gave us no cause for anymore worry or concern.  Amen!  What a relief!!!!  I cannot tell you how happy this made me.  This and everything she was saying.  She was saying “I see you daughter.  She is smart.  She is delayed.  Here’s why.  I am going to help her.”

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You is smart. You is kind. You is important.

Prognosis:  Good!

Prescription:

  • Reduce the Rx in the right lens, increase the Rx in the left lens of her glasses.  Dr. M had Kelsey wear these multi-lensed glasses, much like the “A or B?  A?  Or B?” machine you and I use at the eye doctor.  But they were little glasses Kelsey wore.  Dr. M looked at her eyes through the lens, watched her, waited, watched again, tried to get her attention, and BAM! Dr. M took them off, said “OH MY!” and basically did a little jig of delight.  Apparently she saw everything she needed and hoped to see.  Her hypothesis on Kelsey was correct.  She did not need the intense high Rx in the right lens of her  glasses.  The doctor would decrease the right lens, give the left lens a bit of an increase in Rx (currently there is none), and hope that with this and therapy, Kelsey would start to use her eyes together to see and interpret her world.  It was very, very reassuring to see how our daughter made a doctor squeal in delight.  I don’t completely understand what she saw, but I know it made her understand our Kelsey Ann, and that is, like I said, more than half the battle.
  • Stop using the Atropine drops!  I thought we were destined to be life-long patchers!!!  This is amazing news.  I’m a little hesitant because it seems too good to be true.  I also don’t want anything (her vision or crossing) to regress.  We do NOT have room for regression with this girl!  Dr. M seems to have a good plan to keep tabs on her for exactly this, so I feel better.  Not dropping means not having to dilate Kelsey’s eyes three days a week.  Hooray!  As I explained, Kelsey’s eyes stayed dilated long after the last dose is given.  Her eye is dilated today even though she last had the drops over a week ago!!  Dr. M said some people can stay dilated up to four weeks!  Yikes!!!!  So, this also means that she won’t be as light sensitive. This past Sunday we went to lunch in a very bright restaurant and the poor baby had to eat with her eyes closed because of her photo sensitivity.  It was pathetic!
  • Come back, without Kelsey in a week.  Dr. M likes to have a follow-up appointment with parents only to discuss the exam and evaluation.  What a concept!  Can you imagine being able to have a scheduled, uninterrupted time to talk to your child’s doctor?  Wouldn’t that be such a gift??  If I’ve learned anything in these seven years and hundreds of doctors is that they’re busy.  Busier than you and I, for sure.  Too busy.  They want to help (most…I think), but they have to move on to the next patient, surgery, chart.  I am so excited for next Friday.  For a doctor’s appointment.  It’s sad, I know.
  • Vision Therapy (VT).  I’m sure this is what we discuss next week but many references were made to what we will do at home and in VT to help Kelsey.  Bring it on.
  • Our final direction was to NOT have Kelsey wear her glasses until the Rx is fixed.  I asked, as we were leaving, if she should continue to wear the old Rx and Dr. M said to give it a try without them.  If we could tell she needed the glasses, to go ahead and put them on her, but to try and see how she adapts without the glasses and drops dilating her eye.  This made me a little nervous too because we have seen progress, behaviorally and developmentally when Kelsey wears the glasses.  BUT, I’ve also noticed that was after putting her drops in.  So when you blind her good eye, it makes sense that giving her bad eye a little help would be preferable.  Go figure.  I’m on the hunt for the quickest way to get her lenses swapped out.

After this appointment yesterday, today was SO much more bearable.  I knew (mostly) why she was whining or upset.  And even if I couldn’t interpret exactly what she wanted, I knew there was a plan to fix it.  Phew!