Our New Normal [s] » Our little family's realization, that there is no normal

Rio’s Story pt. 1

The Office

When my son was diagnosed with Microphthalmia, I felt my world come crashing down,  fear and grief flooded in. I was exposed. My prior feelings of invincibility forever washed away by one word I had never heard before, but would grow to know all too well.  Micro meaning little, ophthalmos meaning eye.

“Little Eye.”

What is this? What does this mean? What causes this??? Did I do this to him? So many questions. And LOADS of technical, sterile, and clinical answers boiling down to one thing: My son is blind in his right eye and it is significantly smaller than his other eye. It will not grow to the same size unless science or God change that someday.

More Questions: What will this look like? What happens next? Is he in pain? I’ve never even heard of this thing, much less know where to turn. I turn to the internet. NOT wanting to call another doctor who will just fill my head with more “maybes” and “possiblys”, and now talking “surgeries”. I couldn’t stand one more “worst-case-scenario.”I hear the song “A Day in the Life” by the Beatles… The middle of the song where all the traffic and noise come to a crescendo, and then the alarm clock goes off… “WAKE UP… This is your new reality. Your new “normal”.

What does this new normal look like? Is this going to change everything? I couldn’t get answers fast enough, as my gorgeous teensy 3 week old baby boy that I couldn’t wait to meet, was yet again having to go in for yet another needle prick, and yet another MRI to make sure his brain had fully developed. My sweet, fragile, innocent and pure baby. I searched and searched. All I found were things that scared me even more. Taking my fear and giving it to God were not an option in those days, because I couldn’t sort through my disappointment enough to even consider He didn’t cause this, yet, or He wasn’t punishing me or my husband. Although, I know that is not His nature to do that. Tell that to a woman who’s whole foundation has just been shaken! Who had spent the last 10 years serving the Lord whole-heartedly. So, I kept looking for an answer. Doctors’ dissertations, and clinical case studies, extremes. I just wanted a photo. One stinking photo that I could look at to tell me what my new normal would look like. So I could begin to wrap my head around it while we waited for weeks and weeks to get referrals and appointments. The longer I went without information, the bigger this thing became in my imagination.  “I know this isn’t about me, but if I can’t come to grips with this, HE never will!” I would pressure myself into thinking “If Gabriel and I don’t settle this in our hearts, what are we ever going to be able to tell him?” Envisioning the day when he comes home from school crying because someone was making fun of him?

One picture. That I never found.

Well, now that I have had 7 months of our new normal, I have decided to document Rio’s trips to the Ocularist so that I can paint the world the picture that I so desperately needed to see. And hopefully, someone else out there can relate and curtail half the anxiety I had, just by seeing the photos. And having someone tell you “It’s not that bad!” And the “new normal” gets more and more normal every time.

I am not an expert on this, by any means. I can only offer to you- my experience. You can’t argue my experience. It’s mine. But, I share it with you gladly.

“Hey, It’s not that bad…”

……………..

The human skull needs the growing eyeball pressing against it to stimulate the skull to grow properly and proportionally. So when someone has “little eye” or “eye-s” a scaleral shell or conformer is fitted and inserted into the little eye. Is kind of like a very thick, very hard contact lens. Now, in our case, he has very little, (if any) sight in this eye at all, so we are not trying to “save” the vision or help it develop at all, If we were, then “patching” would come into play where the good eye is patched for a certain amount of time per day forcing the child to look only out of the under-developed eye, thus causing it to “work out”. The human eye is done developing and growing by the time a child is 5 or 6 years old so the window of opportunity for this is narrow. Some people take that option, but it was not recommended for us by some of the worlds leading Opthalmologists and Retinal Specialists, so we took their advice and are just doing the ocular therapy, recommended by both Rios Opth’s, and his Cranio-Facial Docs.

He also had to see a Geneticist, and an Endocrinologist for loads of other tests as he also has a small cleft in his lip- right down the middle. They wanted to rule out all kinds of other serious conditions. Which, thank the Lord, he does not have.

So, now, with the tests run, and the results in, we go to the Ocularist once a month to switch out Rio’s conformer for a larger one that helps him to open his eyelid, and presses against the socket of the eye- stimulating that part to grow. We do not take the shell out. The Ocularist does. Rio rubbed it out once, and we found it in his crib- and washed it, and put it back in. They taught us how to do that. And that first time was really scary, and Rio screamed, and I cried because I made him cry. But he stopped after about 30 seconds.

We have only had to take it out ourselves once because we all had severe pollen reactions (him included) to the point where his eye was completely bloodshot red. It cleared after 2 days, so I put it back in.

Fast Forward to now, Rio is a strapping young Toddler of (almost) 3 who has this shell thing DOWN! No one ever knows he even has a prosthetic unless it’s irritated and goopy, or if you happen to catch him in a sidelong glance where it makes him look a little cockeyed.

Our next big hurdle is teaching him how to handle kids who stare or make rude comments. But our New Normal, is not new anymore, it’s just Normal now.

Click here to view the PhotoDocumentary of Rio’s First Shell.

Please comment back and spread the word so that other people can easily find this when they do a search on Google or whatever. If you blog about this mini photo documentary, and link back to it, it raises it up in the search engines.

Thanks, and feel free to check back for updates, or look in the archives to see the whole journey as it is played out. I began this blog while I was pregnant with Rio. And continues it today.

The Chair...
The Chair…
Rio’s Chart
Shell Boxes- they are like little jewelry boxes- for different types of jewels
Shell Boxes- they are like little jewelry boxes- for different types of jewels
His old shell
His old shell. If you look really close you will see little air bubbles trapped behind the shell this is normal.
Waiting with a scowl
Waiting with a scowl
The Ocularist removes the shell
The Ocularist removes the shell. That blue tool in his hand is a rubbery suction-cup type thinngy that sticks to the shell and helps slide it out.
Still taking it out
Sometimes it takes a couple of tries- especially when baby squirms
Rio with out the shell
Rio with out the shell: without the added support, his eye is very sunken in which becomes more and more noticable as he grows
No shell... I make funny faces.
No shell… I make funny faces.
the most handsomest (sorry, I can
the most handsomest (sorry, I can’t help it!)
He rubs his eye alot while the shell is out
He rubs his eye alot while the shell is out- it must feel strange to him, because he is used to it being in all the time. Scott says it actually provides him with relief once it is in.
They wrap the old shell in wax and keep it for further shaping and sizing reference
They wrap the old shell in wax and keep it for further shaping and sizing reference
The shiny, new shell: little holes are drilled into it, so the eye can still get oxygen
The shiny, new shell: little holes are drilled into it, so the eye can still get oxygen
Conformer Detail: size reference
Conformer Detail: size reference, the black dot is so that you can tell if it is in. Sometimes, since it is clear, it can be hard to tell for sure. So, thus the black dot. Vivia, Rio’s sister discovered the black dot one day and asked me.. “Mommy, why does Rio’s eye have a black dot?” And I said, “So do yours…” She didn’t believe me, so she looked in the mirror, and goes. “Oh… yah. I do!” 🙂 She never brought it up again except to say “We both have black dots, right mama?”
conformer detail: inside. note the thickness
conformer detail: inside. note the thickness
Ocularist Scott prepares the new shell for insertion
Ocularist Scott prepares the new shell for insertion
all set. Here it comes
You can see the suction tool well here
Rio knows what
Rio knows what’s coming… fusses in protest
Inserting the Conformer
Inserting the Conformer
adjusting it
adjusting it
done. this takes all of 5 seconds, he fusses for about 30 more. And he
Done!  This takes all of 5 seconds, he fusses for about 30 more. And he’s happy again in no time!

 

On our next visit, Rio will be getting fitted for his prosthetic piece. Which means it is an eye with “art”. This will be the actual piece he will wear that will have a pupil and iris painted on it so that you won’t even be able to tell the difference unless you are looking for it. I will make sure and keep documenting our journey through my lens.

Thanks for stopping by, and please don’t forget to leave a comment.

🙂

If you want to learn more, you can check out these sites I have found that actually had good information:

http://www.prostheticeye.com/

http://www.geocities.com/phpv_2000/

http://www.anophthalmia.org/index.shtml

 

March 6, 2015 - 1:29 am

Leslie - My daughter

Your email is never published or shared.

C o n n e c t
C a t e g o r i e s
A r c h i v e s