Surgery Updates - Birth to February 2010

February 2010 trip to Detroit - Right eye surgery:

Liam just before surgery in Detroit

On February 15th we had an EUA (Evaluation Under Anesthetic) and procedure on Liam's right eye booked. We were so disappointed to learn during the EUA that Dr. Trese was unable to operate as Liam's right eye is still full of blood from his Sick Kids surgery way back in November. Until the blood is absorbed surgery is on hold - we're scheduled to return to Detroit in June, 2010 for another EUA and hopefully a vitrectomy/retinal reattachment and repair on his right eye. 

We felt deflated. But little did we know how much our appointment with Dr. Ferrence on February 16th was about to lift our spirits! We entered her office not really knowing what to expect - what does a blind baby need with an optometrist! No glasses prescription was going to give him sight - but we went anyway. Dr. MaryJo Ferrence is a pediatric Optometrist specializing in vision rehabilitation in babies. She works alongside Dr. Trese in Detroit. I believe she may be the only one of her kind in all of the United States. I'm unsure if we even have someone like her in Canada! My mom and I went to this appointment a little sadened as our February 15th EUA had been so disappointing. Dr. Ferrence conducted many tests that day, in fact, our entire appointment took 4 hours! She tested Liam's reaction to stimulation using coloured lights - after a few attempts at yellow and green he finally reacted to red light in his left eye! She then put a pair of VERY strong glasses (coke bottles) on Liam, he was lieing on a mat on the floor. Dr. Ferrence then asked me to get really close to his face and speak to him, she said "come on mommy, get close to Liam and let him see mommy's face for the first time". I got about 2 inches from Liam's left eye and started talking to him, "mommy's here Liam, can you see me...". Well his eyes were as big as saucers! His body became totally stiff! Was he seeing me! Was he seeing sights he'd never seen before! Was Dr. Trese's December surgery a success! Although I was directly in front of his face, Liam's eyes were facing to his left. I asked Dr. Ferrence about this and she said it's because Liam is using the inner part of his left eye to see, so by looking to the left, he was using that small patch of vision to see...something! Both Dr. Trese and Dr. Ferrence saw areas of attached retina at our February appointment - she said it would be like looking through a piece of swiss cheese - she gave him a visual acuity of 20/400, and said that rarely does she see babies with Liam's potential in her office! We left that day with a prescription for glasses and so much hope for the future! I'm still a little skeptical, I can't actually SEE that Liam is using his vision - but Dr. Ference says that once we get him wearing his glasses and start exercising his eyes with different light stimulation and eye strengthening techniques that he should start developing some degree of vision in that eye, and we should start to see some changes! She likens it to when a baby has one bad eye - treatment is to patch the good eye to force the bad eye to develop - and it works! So why can't a very strong glasses prescription and stimulation therapy work with Liam! We'll soon find out! 

New Glasses!

We're presently awaiting Liam's glasses to arrive around mid-March. At the point we have Liam's glasses in hand we'll start our at-home exercises and begin saying a few prayers! We'll see both Dr. Trese and Dr. Ference for follow-up appointments in the summer. We also have Liam's cleft palate repair at Sick Kids around that same time so it appears it'll be another busy summer at the Reid residence! 

As far as milestones go, Liam will be delayed by virtue of the fact he's visually impaired. As he can't learn by SEEing what others are doing around him (sitting, rolling, crawling, standing, eating, using a spoon, holding a bottle, etc.) we have to teach him to do all these things using various methods taught to us by the wonderful people at Ontario Foundation for Visually Impaired Children and Durham Infant Development. So far, Liam is sitting up unassisted, rolling from his front to his back when prompted, discovering his voice, LOVES his jolly jumper and is developing some really good floor sliding skills I might add, and at LONG LAST starting to eat from a spoon (which is particularly challenging because he isn't aware of anything 'coming at him', let alone some 'instrument' - spoon- with a strange textured substance all over it! (Textures are extremely difficult for some V.I. kids). All in all we're thrilled with Liam's progress! He still struggles with head movement, but lately has been moving his head to the beat of music which is really adorable! He's an amazing little guy and I can't wait to see what he'll do next!

December 2009 trip to Detroit - Left eye surgery:

Face down position to keep gas bubble pushing
on retina to keep it in place

On December 18th my mom and I travelled to Detroit for the second time. With so much uncertainty, we didn't know what to expect! Liam's surgery was scheduled for 1130am and we were to arrive at the hospital at 10am for registration. Dr. Trese spoke with us briefly about what he would be doing, a vitrectomy and lensectomy on Liam's left eye. After about an hour, Dr. Trese emerged from the O.R. to tell us that he had successfully removed much of the tissue and stalk that was blocking Liam's vision. He had increased the size of Liam's pupil to allow more light to the back of the eye, and said his retina, although thin, was attached in places and he had inserted a gas bubble to keep the retina pressed up against the back part of his eye. For the next 4 days, we were to keep Liam in a position where he was facing the ground to let gravity assist the gas bubble stay towards the back of his eye. This was no easy task - but in typical "Liam fashion" , he endured all he was required to do! Mind you 4 days in a hotel room with a 6 month old only able to face downwards isn't an easy undertaking! Dr. Trese says Liam's eyes are pretty bad, but he's seen worse. He expects that as a result of this surgery, Liam should have light perception and hopefully some motion vision. And as I've repeatedly said, any degree of vision will make a big difference in Liam's life and that's all we can hope for at this point! Only time will tell. We'll return to Detroit in early 2010 for surgery on his right eye...and now the eye drops begin...21 drops a day! This kid's a trooper!

Liam's Eye Surgeries:

After Sick Kids surgery

In November of 2009, Liam underwent a vitrectomy and lensectomy to hopefully restore/save some vision in his right eye. Unfortunately, sometime during our lengthy 6 week wait for surgery time, his retina completely detatched, and during surgery, was torn. Our surgeon chose not to reattach his retina at this time. Currently, he sees nothing from this eye. But in late December 2009, we will travel to Detroit to see Dr. Trese. He will preform a retinal reattachment, silicone gel and membrane peeling, in the hopes some degree of vision can be restored. 

In January 2010, Dr. Trese will attempt surgery on Liam's left eye. His plan is an enzymatic vitrectomy (this is the experimental procedure not funded by OHIP, or performed in Canada, which has given so many kids with PHPV and FEVR a fighting chance at sight), silicone gel and membrane peeling. Again, with the hope of providing vision.

We won't know for awhile if these procedures work, but even to have the hope that some degree of vision will be restored is enough for us! The thing about visual impairment is that there are varying degrees of blindness. Before Liam's diagnosis, I didn't realize just how important ANY degree of vision can be. To even see shadows, or have some light perception can make such a difference in a visually impaired person's life. We want to give Liam this chance!

Liam's Cleft Surgeries:

Liam has had many procedures to date. His most noticable being his lip repair on October 28th, 2009. He looks absolutely gorgeous!

Liam with full tape gear wearing
his NAM to pull together his
palate before surgery

Our first view of Liam in recovery...
without a cleft!

Heading home today! Wearing No-Nos

Dr. Fisher at Sick Kids did such an amazing job! His cleft palate will be repaired around Liam's first birthday. He will endure many other surgeries throughout his life to complete his cleft lip/palate repairs. Nose revisions, further lip adjustments, his palate repair, a bone graft (to assist with dental issues cleft babies have), as well as many dental procedures and a lot of orthodontic work. We have a lot of support from Sick Kids and we know we're in good hands.