What I worry about…

Hoo boy!  Today’s suggested topic from The Daily Post is “Are you stressed out?” Well, really… who isn’t stressed out these days?  If you’re not unemployed or under-employed or upside down in your house or already lost it you’re in the minority.  It seems like everyone is broke.  There are furloughs and lay-offs and foreclosures everywhere I look.

Daddy-O and I are working.  Thank you, God.  We are, however, trying to navigate the quagmire that is the Mortgage Loan Modification process.  They sure don’t make it easy but they do make it extra stressful so that’s something.  Heh.  Business has really picked up for Daddy-O in the last month or two so we’re starting to see a wee, tiny light at the end of the tunnel.  (Hopefully, it’s not a train.)  But that is not where my stress lies.

Danny needs scleral shells.  I’ve known about it for a while now but life always seems to get away from me.  When I got his school pictures back in November I realized how imperative it is that we start the process of getting his prosthetic eyes.  His eye socket seems to be dropping.  His face is becoming asymmetrical.  Not. Good.  What’s really not good, though, is the cost associated with the shells.

 

Danny's Kindergarten Picture

 

D. Danz & Sons is the company that services our area.  Luckily, I hear they are one of the best available in the prosthetic eye business.  That’s the good news.

The bad news is that the cost for each eye is $4,610.  Yep.  You read it right…  for the pair of shells it will cost a whopping nine thousand two hundred twenty dollars!  $9,220! The worse news is that my insurance will only pay $1,000 total.

I really don’t know how we’re ever going to pay for it.  NOT getting them is not an option, though.  sigh.  I never thought I’d need to worry about things like this since I have very good insurance through work.  It’s funny how you don’t realize just how difficult medical (and insurance) issues are until there is a problem…

I did get a point in the right direction from our Pediatrician.  They told me about a local organization called Jack’s Helping Hand.  I had heard about them before because they have a toy lending library for special needs kids.  What I didn’t know is that they have a program to help with medical/lodging/travel costs not covered by insurance.  I just need to hurry up and do the paperwork since Danny’s appointment is February 19th.

Please put in some prayer time asking that Jack’s Helping Hand accepts our request.  I honestly don’t know how we’ll cover the costs if they don’t.  Perhaps  we’ll do some sort of fund-raiser.

Anyway… that’s my big worry these days.  Not as big or bad as it could be.  Not so different from anyone else.  Just money.  Just with a little twist…

Advertisements

The Bombs Bursting in Air…

Five years ago this week we found out that Danny would never see.  He was 9 weeks old.  I can remember the heartbreak and trauma like it was yesterday.  Here is an excerpt from the email we sent to our friends and family that day.

We discovered Daniel’s eye was very clouded over on Memorial Day.  We suspected a cataract.  It took us two weeks to get into the Pediatric Ophthalmologist – not that getting in sooner would have made a difference anyway.  She (the Dr.) took one look at his eyes & made an appointment for the next day at Children’s Hospital Los Angeles.  Things happened very fast after that. 

Wednesday found us at CHLA seeing Dr. Song who specializes in cataracts & glaucoma.  After about 5 minutes and a quickie ultrasound on his eyes he said he had tumors behind both eyes & casually threw out the words Retinal Blastoma.  Know that I about checked out right then & there.  Glaucoma & cataracts are one thing… cancer is another entirely.    Dr. Song ran down the hall & grabbed Dr. Murphree who specializes in  optical tumors.  Dr. Murphree and another doc plus a resident all spent a bit of time doing an u/s on his eyes & decided that they needed to have a CT Scan & do an Evaluation Under Anesthesia (EUA) the next day.  He had bilateral detached retinas & maybe tumors but he wasn’t sure. 

So, fast forward to the EUA.  Thankfully, in the middle of the procedure the social worker came out to ask more questions to see if this was caused by his prematurity and let us know it WAS NOT cancer.  Insert a universe-sized sigh of relief here.  Unfortunately he did have glaucoma, she says.  Back to the OR.  

So, here is the official diagnosis/prognosis.  Daniel is blind.  Can you hear our hearts breaking?  He has Norrie Disease, narrow-angle glaucoma & bilateral detached retinas.  He will never be able to see.  Norries also carries with it about a 50% chance that he will lose his hearing at some point & be developmentally disabled.  That is yet to be seen.  There is really nothing they can do to restore his vision.  They can, however, relieve some of the pressure from the glaucoma.  So, on Friday, June 24th we will go back to CHLA so they can remove the lens & scar tissue from his rt eye.    They will do the left eye later on.    Obviously our lives have changed drastically overnight.  We’re still reeling from the news.  We appreciate your prayers for strength & good care while we go thru the surgeries.  We know God has a special plan in mind for our little man. 

In rereading this email I’m struck by two things: my immersion in the facts of his situation to forestall the pain heading my way (a coping technique I still lean on heavily) and our faith in God’s master plan. We have come a long, long way since that day.  We’ve discovered that the developmental delays are overstated but the hearing loss associated with Norrie affects closer to 100% of the boys.  The Lord giveth and the Lord taketh away. 

Life with Danny is always full of surprises!  I took the boys to watch our local SLO Blues play baseball on Saturday night.  It was fireworks night.  I had Danny sitting on my lap for the show.  It was awesome!  Easily as brilliant as any 4th of July fireworks display I’ve ever seen only better because it was so very close.  I could feel the booming reverberate in Danny’s chest as I held him!  After the show he talked about the fireworks non-stop as he usually does when something excites him.  One of his comments, however, stopped me cold.  “What was the big lights and the big booms?  Was it the fireworks?”

“Big lights?”  What?! 

“Danny,” I asked him, “could you see the lights?”

I never got a straight answer from him.  He was way to absorbed in his own questions to answer any of mine.  But he does have some light perception so it’s not a big stretch to think he actually saw the bright explosions of light in the fireworks show.  Can you imagine how beyond thrilled I am?  Can you imagine what a pure joy it is to think that there is something in the world that my sightless son can see and that particular something just happens to be so spectacular?  To think he may actually be able to understand on some level the “rocket’s red glare” line from the National Anthem (his favorite song).  Oh, be still my heart!!!

I’m just saying that life is good!  I am so lucky to have a wonderfully happy, healthy 5 year old with more gifts than disabilities.  I wouldn’t trade him for the world… but feel free to make an offer anyway.  Ha!  I’m always open to negotiation!

Shell Game

Good news.  Turns out Danny had double ear infections.  His hearing became much better as the infections cleared up.  I am still troubled by his occasional comments about ear ringing.  I’ll withhold excessive worry about impending deafness, however, until A)I’ve managed to get him a hearing test and B)I free up some space on my Worries card.

In the meantime, I’d like to introduce you to my next medical dilemma.

Adorable face, is it not?  Despite his never-ending malaise this winter and his general hatred of having his picture taken he still manages to look cheerful.  Certainly more cheerful than Mommy is looking these days.  There might actually be some sort of reverse correlation going on.  I just can’t prove it.

Notice anything different about his right eye?  It seems to be sinking back into his head.  Probably because that eye seems to be shrinking.  Dr. Tawansy warned me this might happen.  The eyeball is a spacer for the eye socket.  If a child loses one or both eyes before his skull fully develops there is bound to be some deformation.  The solution is prosthetic eyes.

Of course, Danny still has both of his eyes.  They are just abnormally small due to the Norrie Disease.  In his case he will need scleral shells.  Scleral shells are sort of like an enlarged, thickened contact made of plastic that can be placed over the original eyeball.  They make a mold of the eye socket using a material similar to the stuff a dentist uses for impressions. Danny is sure to f-r-e-a-k!!! I have no idea if this is covered by my insurance but the fitting fees are in the $2500 to $3000 range.

So, that’s all the bad news.  The good news is that his eyes will look completely normal once he has shells.  Oh, Heaven.

Here’s a question for you:  what color should we make his eyes?  He was born with brown eyes like the rest of us.  However, his eyes have been blue since infancy and that’s what he’ll tell you if you ask him what color his eyes are.  His blue eyes are striking with his dark coloring.  I must admit I’m partial to that.  But he’d fit in with the rest of the family better with brown eyes. Just out of curiosity Daddy-o asked Danny what color eyes he’d like to have.  His answer:  red.  Or green.  But really red because he likes red.

Heh.

Whatever

Yesterday was a big day.  I went to observe a kindergarten class on Danny’s behalf.  A Special Education Kindergarten.

I’m always amazed when something offends or bothers me because I’m usually so whatever about stuff.  The first time his Orientation & Mobility therapist brought a cane for Danny to use he paused before showing it to him.  He looked to me and asked if I was ok with it — the cane.  I didn’t understand what he was asking at first.  I was too busy being excited for Danny to examine my own emotions.  I hear a lot of parents get a little freaked out when they see their little ones using a cane for the first time.  Meh. I wouldn’t know. 

There’s a possibility Danny is somewhere on the Autism Spectrum.  It’s never bothered me.  Whatever.   He is who he is and a label on his quirkiness isn’t going to change anything.  What it may do, though, is identify other tools we need to provide for him to be successful.

We have always planned on mainstreaming Danny.  In theory, he’s just like every other kid only he can’t see.  Why make any more concessions to his disability than we have to?  Life moves fast so try to keep up.  Blah, blah. blah.   Daddy-o and I don’t cut either of the boys much slack in the expectation department.  Sink or swim.  Right.  Right?

This school year it has been particularly difficult to find an aide (para-educator) for Danny.  They spent a good amount of time interviewing before school started.  When I finally got the gal’s name I Googled her for some reason.  What came up was less than comforting.  There were at least a dozen sites where she professed to be a Wiccan into Paganism and the Occult.  I totally lost my cool.  Turns out our school district doesn’t Google their potential applicants.  We’re on our third aide since September.  The Wiccan didn’t make it out of the gate so we had the Para-Educator’s educator working with Danny until they found someone else.  That someone else was a guy who had been aiding in the preschool class for a while.  He was enthusiastic but had no formal para-education training.  Danny loved him.  Turns out it was because he was an enabler that didn’t challenge Danny at all.  Which brings us to our current aide.  I’m not a fan.  Danny seems fairly ambivalent.  She strikes me as a clock-puncher.  She has no investment in Danny’s successes or failures.

Danny has done a good amount of backsliding as a result of all this instability.  Our case workers have been urging us toward placing him at their main school – the one for special needs kids.  That translates two ways to me.  Sending him to their school would relieve them of hiring someone specifically for Danny.  Also, the more kids in their school program the easier to justify it’s existence.  It would also mean a long bus ride each way because it’s in the neighboring town.  Seems like a little much for a 4 year old.  Plus it wouldn’t be very convenient for us.  I guess the whole Special Ed thing was a big component in my resistance as well.  Hey, no one is more surprised than me. 

When push came to shove and The Kindergarten Decision had to be made, I had to acknowledge that Danny is just not ready.  Not for mainstream kindergarten, anyway.  But I didn’t want to stick him back at the State Preschool again next year  The class makeup could be anything from mostly 4 year olds to all 3 year olds or somewhere in between with Danny 5 going on 6. 

So I went to check out the Special Ed Kindergarten yesterday.  There class consisted of 6 kids of varying  abilities… heavily weighted towards the Spectrum side of things.  Initially, I cringed to hear the lack of verbal skills from 5 year olds in the second half of kindergarten.  Surely, Danny doesn’t belong here, I thought.  But then I saw 1 teacher and 3 para-educators to 6 kids.  And saw the required peer interaction to earn free play time.  I talked to the teacher about how they spend inordinate amounts of time with each new activity or event; practicing and perfecting each routine until all are confident in their ability to perform.  I wondered how often Danny feels drug through life… a traveler on a journey he has no control over.  And I realized that was the place for him. 

In August my son will start Kindergarten in a Special Education class.  He’ll be surrounded by children with Autism and mental and physical disabilities.  They will be his friends.  He will thrive.  And I will be a proud Mom.  I’ll be all whatever again for the next big thing.

"A Capella"

is Danny’s newest word. I’m not sure where he heard it but he was very frustrated for a full day because the sitter didn’t realize what he was saying. Of course he was pronouncing it “a cambella”. And at first he thought it was the name of a song so he kept saying, “I want to sing A Cambella.”

The sitter thought he was just making up words but the tempo of the word was to familiar. When I asked if he meant “a capella” he just about spun himself into the ground in excitement. Finally, someone understood him!

Now all we do is sing a capella, which he’ll tell you is songs without music. His current a capella favorite is Skidamarink, only he gives it a little Danny twist.

I love you in the morning
and in the afternoon.
I love you in the evening
And under the balloon.

Oh, skidamarinky dinky dink
skidamarinky doo
I love you.
‘Deed I do. Yes, I do.


Is he not just the cutest little guy? Sometimes I just want to squish him because I can’t stand the cuteness another minute!

In other news…

I attempted to get Danny’s baseline hearing test done today. I don’t know if I’ve mentioned this before, but there is almost 100% certainty that he will suffer mild to profound hearing loss at some point due to his Norrie’s Disease. At any rate, I took him in to get his hearing tested but he was far too enamoured with listening to the new sounds through the little ear buds in his ears to bother with putting the lego blocks into the fireman hat. No results there. We were able to get results from one test that esentially measures the amount of sound which escapes from his ear after he hears it. That test he passed with flying colors. Which means he could only have the mildest of hearing loss if any at all.

So… Yeah!

Two hospitals, 295 miles apart, in less than 4 hours. Beat that!

4 am. That’s when my alarm went off this morning. 45 minutes later Danny and I were on the road to Bakersfield to see Dr. Tawansy, his retinal specialist. We don’t go often (once or twice a year) to the high risk / ROP clinic Dr. Tawansy holds at Kern Medical Center. We don’t really need to. But lately I’ve noticed that Danny’s left eye seems to be shrinking back into his head. So, off we trudged to the valley.

It’s weird to sit in a tiny room surrounded by non-English speaking mothers and their micro-preemies with my ginormous 3 year old who weighed in at a respectable 7lb 3oz when born 5 weeks early. I feel like a poser.

It was mostly good news today. They eye drops I stopped over a year ago without asking permission are no longer necessary. In fact, The good doctor said I probably did the right thing since he obviously doesn’t need them. Ha! Take that Daddy-O!

The Incredible Shrinking Eye, however, is every bit the harbinger of possible bad things to come that it would seem to be. It seems his eyes aren’t producing/generating – whatever eyes do – enough pressure to maintain proper eye size. This is fairly typical and to be expected. Unfortunately, if his eye shrinks below 50% of it’s normal size it can start affecting the growth of his eye socket. Which would require the use of schleral shells to help act as a “place holder” for the eye socket. They are sort of half-prosthetic eyes that fit over the real eye. Sound really uncomfortable, doesn’t it? Well, we’ll follow up on that later.

But here is the shocking news. Danny has light perception.

Did you see how calmly I said that? Like it’s no big deal? Yeah. No big deal. Except Danny can see something! Even if it is only light. It’s more than we ever thought he could see. More than we thought he ever would see. Can you see my smile from there?

When Dr. Tawansy shined his light in Danny’s eye, D squinched his eye shut, shied his head away and brought his hand up to block the source of the light. And the doctor had never touched him. But he did nonchalantly confirm the light perception when I mentioned it. Holy cow!

We got home at 1:30. Just in time for Ben to call from school crying because he’d fallen on his injured wrist again while playing soccer at school. sigh

I left Danny at the sitters, picked Ben up from school and headed to my second hospital in four hours. So much for working a few hours today.

Turns out Ben has a Buckle Fracture in his wrist. It’s when the outside of the bone buckles but doesn’t break. Like a green tree branch when you bend it.


They put a soft cast on it and we go to see an orthopedic doctor tomorrow or the next day for a cast. He may not be able to play soccer which starts this week (and which Daddy-O is coaching).


I finally got home for the day at 4 pm.

For anyone keeping track, that was 11 hours of driving/waiting room time, 295 miles, 2 hospitals, 1 splint and 1 medical breakthrough all in one day.

I’m pooped!

"A rose by any other name would smell as sweet."

It’s been growing clearer lately that D is showing more and more signs of being autistic. He has Norrie’s Disease. Autism is known to be fairly prevalent (roughly a third) in Norrie’s boys. For the last 6 months or more I’ve gone back & forth every few weeks or so on his symptoms, first convinced he is clearly autistic then doubting the evidence before me. When we’ve approached his Vision Instructor about his behaviors and our concerns she always dismisses them by saying how similar blindisms and autisms are…

Well, about a month ago D obtained a new therapist of sorts. There is a graduate student getting her Masters in Behavioral Special Ed (?) who also aides at the county special ed preschool. D is in her Master’s study. Through her observations at his mainstream preschool (i.e. he never interacts with his peers) we set some social goals at his first IEP and she did a video taped play date with my girlfriend (who is an OT) and her daughter to discuss with her professor.

I rarely see D with other kids his age. We just don’t know any. But at that play date I saw behavior I have never seen before. There was hand flapping. A lot of hand flapping. And I heard a word used many times that I had also never heard before.

Perseverate.

That would be the mower / blower / vacuum / weed eater noises that he joyously makes for sometimes hours on end. Sometimes up to 9 hours. Sometimes so long that I want to put an ice pick in my ear. But it makes him so blasted happy to do it that we let him and we smile because he is adorable doing it too.

D turns 3 on Sunday. On Monday he falls under the School District’s jurisdiction for therapy & special education. We will contact them to pursue an evaluation/diagnosis on the autism issue. Nothing like hitting the ground running. I think they are going to hate me. We are hoping to take him to the Autism Diagnostic Center in Fresno. Everyone agrees that he is “very high functioning” even if they won’t actually say they think he is autistic. However, the Drs around here have been known to give an autism diagnosis because that is what you want. I would like something a bit more reliable and specific than that, thank you very much.

Our day to day world of laughter and frustration with the Light Of Our Lives won’t change one way or another because of an “autistic” label. But an accurate diagnosis will give us access to a few more tools for his life-skills tool belt. Us too. And I’ll take all the help I can get.

I do have a question or two for those of you who’s kids are also autistic. Once their autism became obvious, was there degeneration or progression of skills and behaviors? Or is this as individual as the children themselves?

Socialization has long been D’s weakest area but he seems to be making great strides there. On the other hand, he reverts to the mower/blower noises far more frequently and asks repetitive questions continually and becomes quite upset if he doesn’t get the expected/desired answer. I can’t help wondering if the pressure of socializing is causing the other “comfort” behaviors…