Monday, May 3, 2010

Update on "Joaquini"

My little angel boy is growing up. He is consistently standing on his own and taking 2-3 steps without prompting. With prompting, he is taking 5-8 steps. He may be walking by the time we return from Ukraine in a week. It's so exciting and I can't wait for him to take this next "step" in his development.

On another (more disturbing and shocking) note, my mom took Joaquin to see the eye doctor last week since we were in Ukraine and didn't want him to miss this appointment. We've been waiting over 9 months to see this doctor. Pediatric opthamologists are few and far between. The last time we had Joaquin's eyes checked, his vision was excellent and he had a strabismus that we were addressing with patching periodically as needed. His strabismus has slowly improved with time and when he started creeping on hands and knees, it was improving even more. He has excellent vision as far as we knew because he can make the sounds and signs of different animals and objects when looking at their pictures and he never runs into things or stumbles and he seems to know and "see" exactly what he wants to. He loves his Signing Times videos and also imitates those while watching the TV and it never appeared that he was using only one eye. So we knew he could "see" and weren't concerned too much. We were just eager to hear what the specialist would say about his improved strabismus and see what else was new with his sight.

Imagine my surprise and shock when I got an email from my mom that the doctor said Joaquin is almost BLIND in his left eye. WHAT?!?!? So the specialist recommended immediate patching of the right eye for 3 hours per day for 3 months to see if he can regain any sight in his left eye. Shock...that's all I felt...shock. When did his excellent vision deteriorate when all we saw was progress?

So my mom has been patching Joaquin religiously since then. What is very interesting is that even when patched, Joaquin can see. He gets around just fine, doesn't bump into things. He watches his programs and looks at his books. He does everything he normally does...so how is that blind?!? We will continue to do the patching and I am VERY eager to go to the next appointment and try and figure out what is going on with Joaquin's sight. I have a million questions and I will NOT miss this appointment.

I feel horrible about all of this. I feel responsible. I don't understand how this happened. I just want the best for my boy and will do whatever I can to help him. So I'm hoping and praying that his sight will be regained in his left eye. These things we take for granted...sight...vision...are so crucial and seem even more so when the challenges are already stacked against my little guy.

Love you "Joaquini"!

10 comments:

stephanie said...

OMGooodness! You cannot put any blame on yourself! one, get a second opinion if you can. And two, if J is doing well with his eye patched, that's great! Maybe it's not as bad as the doc thinks. And three if it is as bad it obviously isn't bothering him much, somehow he is not letting it stand in his way if you saw all that improvement.I can imagine your shock though, I would be too!
And I will be praying for Joaquin's sight too!

Kimberly said...

Oh Jen, I can feel you heart hurting while reading this :(

Is it possible that the doctor misdiagnosed? Either way, Joaquin is AMAZING and resilient and I'm certain he will regain any lost vision in those three months : )

xoxo,
Kim

Jennie said...

Jennifer - I'm no ophthalmologist, but I have a bit of experience with some of these diagnoses. Micah has strabismus and has worn glasses since age 1 in hopes of avoiding surgery (though it does appear he will need surgery, likely this fall). One of the reasons that doctors correct strabismus is to avoid amblyopia. My guess is that Joaquin is not truly "blind" in that eye. But his strabismus probably was bad enough that his brain is no longer recognizing what he sees in that eye (that's what amblyopia is).

My hubby had amblyopia as a child and went through significant vision therapy to correct it (it was not detected until he was 7 or 8). And we just received that same diagnosis for Nathan (age 4.5, "typical").

All that to say... Joajuin is just two. And I'm sure with the right therapies he will rebound quickly. He's a tough little guy.

Don't feel guilty... you were doing as you were told.

Derek, Kenzee and Gage said...

Sorry to hear about the bad news, I'm sure a lot of questions are going through your mind and I hope you are able to get them all answered thoroughly. So fun all the great improvements he is making, he is growing up so big!

Sasha said...

Oh don't blame yourself. Wysdom has some major eye issues. His eyes do cross and he also has nystagmus. We are doing the patching of the good eye (left) to get the right to work more. Our opthomologist has stated that he will hate the patch because it will leave him blind. She didn't mean literally blind. What she meant is that the weaker eye is not used and therefore the pathways to the brain are not strong and have to be developed by patching. The patching of the good eye, causes the weaker eye to work make the connections with the brain. So maybe this is the same for Joaquin?

We are to patch from 1-2 hours a day. Ha!!!! That's a joke. Wysdom tears it of in a second. Anyways we have figured out how to keep it one and when we go back to see her, we will find out if we are going to have a surgery.

I would say don't beat yourself up. You are doing the best you can and who know's you could get that re-evaluated. It sounds like he can still see when patched. Ugh I am sorry that you had to wait so long. Praying that it all works out. Sending hugs!!

Mel said...

Way to go with the walking Joaquin- what a star!

On the eye front, don't beat yourself up. My friend had a 4 1/2 yera old who had shown no signs of any problems, and then completely failed his kindy vision check. He had the same issue as Joaquin, which is now finally improving 2 years and much patching later :)

He is obviously doing well as he is walking- look out for the trouble that's in store next!

Monica Crumley said...

Oh, Jennifer, I can feel your pain and shock, but it's not your fault -- you are NOT responsible for Joaquin's vision! Obviously, Joaquin hasn't let lack of vision get in his way with all his developments, so how could you have known? I know you'll do what you can to help regain his sight! And that in itself is very encouraging to know you may be able to reverse this. I love hearing about Joaquin progressing in his standing/walking. Can't wait to see him again!

Jen said...

I was so happy to stop in today and read that Joaquin is a walker. In my book 3 steps is enough to be considered a walker. Yeah Joaquin!!

I will be praying for Joaquin to regain his sight and for the doctors who will be treating him that they may have all the knowledge necessary to care for Joaquin in the best way possible.


So happy to see pics from Ukraine. You are such a blessing to Sophia and I can only imagine that she will be quite a blessing to your family as well.

Marie said...

I have extropia of my left eye. It isn't noticable to look at- but I feel like I am always reminding the eye to focus. I don't process information as quickly with my left eye either. I was patched as a child and wear glasses. I wish I would have had surgery as an infant to correct it- maybe it wasn't available then- I am 44!
With patching and surgery- I'm sure Joaquin will have sight. He will always have a dominant eye. Be aggressive with treatment while he is still young.
He is such a cutie!!

Heather said...

I spent 22 years going to the same pediatric ophthalmologist for my amblyopia. Because of Dr. Jacobson, I never had to have eye surgery. When I was growing up, my mother patched my "good" eye for several hours a day. And at that time my eye was shifting around 40% and now it only shifts 4 - 6%. I attribute my good eyesight to him!

So please don't feel bad at all - you are really helping little Joaquin. :)

He works in Santa Rosa for Kaiser (after starting his own practice, North Bay Eye Associates). If anyway lives close or is willing to make the trip, I highly recommend him. He was the best doctor I have ever had. (My whole family went to him after I did - parents, grandparents.)

Website: http://www.permanente.net/homepage/doctor/markjacobson/