Family Business

I'm afraid our other 3 kids are too worried about Tommy and his contacts and patch.  I don't mean that they are worried about his future or are all doom and gloom.  They worry about the day-to-day stuff.  If they notice his patch is off, their first reaction is "Mommy!  Tommy's patch is off!" in near panic- even if it is the evening.  They worry about his contact and whether it is in or not.  My oldest was born a worrier- but she is constantly gazing into his eyes to make sure she sees it.  It is difficult to see, so she regularly sounds the alarm "I CAN'T SEE HIS CONTACT!"
It struck me most when Tommy rubbed his contact out last Friday on the drive home and it was sitting on his cheek.  My 4-year old was in the car yelling that Tommy lost his contact!  At first, I just thought she was trying to get in on the panic action.  Her 6-year old sister peers over the back seat and said "It's true, he lost his contact!"  Lo and Behold, the contact was sitting on his cheek, plain as day (and thankfully safe!)
While I am happy to have help in keeping track of all of this, other times I worry that they are too worried about non-kid stuff.  No 9 year old should have to worry about her brother's patching time.  (Although, if I am honest, she'd find something else to worry about if it wasn't that!)  No 4-year old or 6-year old should watch out for her brother's contact.
I guess that's just one more reason my girls will be spending time on a therapist's couch someday....

Telling our story

Tommy is now 5 1/2 months old.  His cataract is such a small part of who he is, that I don't even think about it on a daily basis.  Sure, I think about his contact (whether it is there or not) and his patch (and how much he hates it), but all that is just part of our routine... much like brushing teeth or getting dressed.  While I don't exactly forget that he has a patch, I don't often remember that it is strange for a baby to be wearing one!  So, it has started to surprise me when someone asks about it.  
I've had to explain the story quite a bit lately, as my husband gave a testimony in church a few weeks ago about small groups.  He told Tommy's story- it relates to small groups as our small group was an amazing source of support for us. 
Now a lot of people in our church (in our relatively small town) see us around town and ask about Tommy.  It is very difficult to explain the patch.  People think we patch the "bad eye" to protect it, or we previously patched the "bad eye" after surgery.  They are often surprised that we patch the "good eye" to make the "bad eye" stronger. 

Strangers are a different story.  I think I have it down pretty well, I usually tell them that he had a cataract at birth, similar to the cataract you get when you are older.  I also tell them that it is different, because 1) it is rare and 2) since a baby learns to see after birth, the cataract is a much bigger deal and we are working to correct his vision.  I tell them that he wears a contact, and laugh about how much it costs ($250 EACH, not for a year's worth!) I explain that we patch the "good eye" to make the cataract eye get strong.  Those who are interested will ask follow up questions, those who are bored will glaze over and be glad when I am done talking.  Interestingly enough, I have never had a negative experience with all of this.  I've caught people staring, which I completely understand, I tell them the story (whether they asked or not!) and it is fine.  We certainly have had quite a few kids ask us what happened, and I modify my above speech just a bit.  But really, no one has been malicious.  I've had a few "poor baby" or "isn't that terrible?" comments- and I agree with them, it is terrible that he had to go through this and will deal with a lot growing up with this.  But I also feel very thankful that he is otherwise a healthy, happy little baby.

More on Infant Contacts for Aphakic Children

The contact Tommy uses is a Bausch and Lomb Silsoft lens.  We didn't have a choice of lenses, this is just what our ophthalmologist prescribed.  These are extended wear (our doctor recommends changing weekly, although the package insert says that some people change them monthly).  Upon further research, I'm happy he chose these!

Most ophthalmology text books recommend the following guidelines for infant contacts:
1.  Lenses should have maximum oxygen permeability
2.  Lenses should have variety of power options available
3.  Infant lenses need a steeper base curve
4.  Infant lenses need small diameters
5.  Lenses need to be easy to handle and fairly sturdy
6.  Lenses need to be able to tolerate medication administration
7.  Lenses should be reproducible
Source:  Scalfani L.  Aphakia. In: Horn MM and Bruce AS, eds. Manual of Contact Lens Prescribing and Fitting. 3rd Ed. St. Louis, MO: Elsevier Inc, 2006; 577-8.

Silsoft lenses meet all criteria- AND they are extended wear, which makes it easier for our busy family.  In addition, Bausch and Lomb has great customer service.  Tommy's contact was ~2.5 months old and it began to cause eye irritation (red and itchy while contact was in).  I called the manufacturer to inquire about potential problems, and they were very helpful.  They sent me a new lens (at no charge!) and sent a postage-paid mailing label to send his old one back so they could examine it.  The new lens came within 5 days as promised.

I found an interesting link while researching them... some of you may find this helpful: http://www.revoptom.com/content/d/news_review/c/18417/dnnprintmode/true/?skinsrc=%5Bl%5Dskins/ro2009/pageprint&containersrc=%5Bl%5Dcontainers/ro2009/simple

I've read a little bit about other lenses, but have no experience, so here is just a listing:  Flexlens (daily wear), Kontur Kontacts (daily wear), Alden Optical Lenses... and I am sure this is not a complete list!

He Can See!

Our last visit to the ophthalmologist was fairly boring (and quite short!).  At 4 months old (3 months post-op) it consists only of an extensive eye exam.  The last visit didn't even include dilating!  I'm not complaining... just surprised.  I keep expecting things like EUA (exam under anesthesia) or lengthy visits or dilating or glasses prescriptions... and was happily surprised with a dismissive "We'll see him back in 4 months!"

We always have a few questions.  One question we've always wondered about and never dared ask was "will he be able to see out of that eye?"  And the doc seemed surprised at the question and replied "Oh, he can see!  We won't know what his vision will be, but we hope it to be 20/70 or 20/50."  What wonderful news!!  If Tommy didn't have one "good eye" and had 20/70 vision, he could drive during the day.  If he had 20/50 he could drive unrestricted.  We don't have to worry about that, assuming his "good eye" has normal vision.  Our doc called his aphakic eye his "spare tire eye".  If the "good eye" goes bad (macular degeneration or something) he has this eye to back him up.  It was wonderful news!  I'll take a boring visit any day!

I did it!

Tommy has become an expert at losing contacts.  So far, we have found them: in his car seat, on the wood floor, on the carpet, in his swing, and at daycare.  Each time I stress out and panic.  But, I have now successfully inserted his contact twice- with no crying (for either of us!)  I've also managed to take it out twice.  Since I am slightly (OK very) squeamish about eyes- I am quite proud of myself!  I never thought I'd be able to do it... if I can do it, anyone can!  If only I could figure out how to make him keep the contact in (and the patch on)...