With Halloween upon us....

Daddy vs. the Contacts

After reading this on eyepowerkidswear.com, Infant Contacts 101, Joel and I decided to have him learn how to put in and take out the contacts.  It would be great to have another set of hands that's knowledgeable in case I am unavailable.  

Tonight was a great success!  Though he admitted being nervous, he triumphed in the right eye after only 2 tries!!!  (I had already taken out the right CL.)  Way to go, honey!!!!

And not a hint of jealousy from me (who is a contact lens wearer) who struggled for MONTHS to really get it right!  :)

Eye "contact"

Looking back on Em's baby photos, I see so many pictures of her looking directly at the camera, from very early on.  She got used to mommy being in her face, and I became her paparazzo.  :)  I have done the same for Sades, taking many pictures of her daily life, trying to capture every moment.  What I have noticed from my Aphakic baby is that she has a very hard time focusing on something for more than 1 second (the vision teacher calls it "broken tracking"), so I am unable to get many pictures of her looking at the camera, smiling at me with her amazing beautiful face. It breaks my heart, and it's a new learning experience for me: trying desperately not to compare my little gal to other babies her age, or even her older sister.
But today I got the greatest gift - a picture of Sadie smiling at me. I'm not sure if God knew that I needed a "win" or if the contact lenses are helping her vision.  But I know that I will treasure this....forever.  

"Hi, Mommy!"

SUCCESS!!!!

I.....GOT.....THE....CONTACT........LENSES.....IN......BY......MYSELF!!!!!
(Ok, perhaps Em assisted by distracting Sadie, but still.)
Do you know how hard this is?  Seriously?!  It's like trying to put pants on a fish.  Just shows what you can do if you HAVE to.  Success!

Renaissance Festival

We were lucky enough to get free tickets to the Renn Fest today, and I'm super glad we went, as it was great weather, and Em had a wonderful time.  Sadie slept most of the time, but when she woke up, instead of keeping her in the stroller, I put her in the Baby Bjorn so she could "see" what was going on.  I had her big brimmed pink hat on her, covering up her eyes from the powerful rays of the sun.  It's so tough to be outside with her glaucoma; it makes me sad that life is so bright for her.  

As we were walking up to a vendor to get some ice cream for Em, the gentleman working behind the counter mentioned that Sadie couldn't see from underneath her hat.  Maybe it was his tone (don't-you-know-your-baby-can't-see-anything) or look of questioning, but something inside me snapped.  "She has glaucoma!", I almost shouted.  I'm sure he meant nothing by it, but some days I am able to be patient with the comments and some days the comments trigger my "Momma Lioness" (as Sadie's wonderful ECFE teacher calls it).  

Sorry, vendor at the Fest.  I'm still learning how to deal with this life that God has given me.  

Picture of Sades in her hat (from a previous outing).  BIG brim to cover her eyes!

Organization for this cluttered mind!

I had a conversation with my dad yesterday; I explained to him that my life has changed in ways I never knew it could.  Obviously, having my second blessing in my life was bound to change our family and our lives in wonderful, amazing ways.  But, with Sadie's diagnosis, things have REALLY changed.  I now live in a world of surgery and doctor's appointments, plus looking at Pintrest ideas for visually impaired children as well as blogs and websites for children with glaucoma.  In order to make sense of the chaos, Joel found and bought a fantastic product, "My Doctor Book".  I finally got the finishing touches done last night, and I love it!!!  I will bring it to every future appointment for Sadie, including our visits to Gillette Children's for physical therapy.  

Inside it has space for business cards, insurance information, medicine info (doses, date taken, etc.), and procedural information.  I have added tabs for each surgery that Sadie has been through, so I can look back and refer to doctor's notes at any time.  I love this!

Post-op!

    Although I certainly don't enjoy going to post-op appointments on my own, I understand that Joel has taken his share of time off recently, so I journeyed to campus yet again to check in with Dr. G.  Sadie was SUPER fussy last night and this morning, and although it's to be expected post surgery, it makes the whole family a little irritable.  It's certainly not easy to hear her suffer during the 40 minute car ride; Tylenol just doesn't cut it after a Goniotomy.  
    As we arrived at the clinic, Sadie was (yet again) the youngest patient by at least 70 years.  The only good thing about that is we get a lot of sympathy from the elderly patients, similar to how a great grandparent would be.  This time around I talked to a very nice older couple who asked about Sadie's shield and patch; they were quite surprised to hear about bilateral cataracts in a baby.  
    After a blow-out diaper, using all the wipes I had, and coming unprepared with no extra outfit (Murphy's Law!), we were called back.  Sadie was unable to be soothed by bottle, pacifier, rocking, etc. so by the time the intern came in to take off her patch, I just asked that he do it QUICKLY.  She always cries so hard when the tape comes off, and it breaks my heart, but thank God she is easily soothed.  
    The right eye looks WONDERFUL!  We are jumping with joy, and I am holding on to hope that this surgery remains successful.  Her cornea is very clear, and there is little blood and bruising this time.  Dr. G was very happy to see the eye so clear as well.  We are back to our strict regimen of drops 4 times a day, shield on for a week, no contact in the right eye for three weeks, no rubbing, etc.  (By the way, trying to keep a STRONG WILLED 4 month old from rubbing her eyes is a FULL-TIME JOB, and it's exhausting.......)
    Next EUA (examination under anesthesia) is November 11th at 9am.  We pray for LOW glaucoma numbers and NO SURGERY NEEDED!  :)