Heaven Sent!

Liam started daycare in August of 2010. This was a monumental event in our lives considering when I first learned of Liam's vision problem I thought I'd never return to work, I'd be his sole care-giver for eternity, that no daycare in the land would accept him, that my life was over - again, this was back during my DARK DAYS when I could barely peel myself out of bed, aka, the dark pit I continued to fall deeper and deeper into. I couldn't have been any more selfish or wrong!!!

One of Liam's
first days at daycare
 

Enter Schoolhouse Playcare...we know the centre and ladies well as my middle son Brady attended this very daycare from infancy until he started JK. The ladies in the infant room have been nothing less than extraordinary with Liam! They’ve all been so open to my never-ending suggestions and constant ramblings about all things 'vision', so patient about having to do a little/a lot extra with Liam, and very welcoming to the steady stream of resource professionals who visit Liam in his daycare setting. I was absolutely terrified that the ladies wouldn’t know what to do with Liam and would be apprehensive about having him in their care – within the first days of starting daycare my fears had all but vanished!

By December of 2010 Liam’s daycare hired Enhanced Staff Worker, Sal. Because of Liam’s disability, he is entitled to a one-on-one teacher during his time at daycare. Sal is has been heaven-sent! She reminds me of a friend, Melissa, who cared for my oldest son Lukas, now 7 years old, when he was a baby – tragically, Melissa and her dad were killed in a car accident 5 years ago when Lukas and her own daughter were just babies. Melissa did wonderful things with Lukas and I will forever love and remember her for that. I feel as though we’ve been blessed with that same type of person having Sal in our lives for Liam. She spends 6 hours a day with Liam teaching him about everything and anything! Sal has developed her own IPP (Individual Program Plan) where she outlines his development in various areas; cognitive, physical, sensory, and social/emotional. Sal has identified his strengths and needs in each of these areas and every day she works on activities with Liam to help him meet goals she has set out for him. Are there really people like this in the world….YES!!! Sal has accompanied me to Liam’s visual playgroups and even to his Speech/Language development appointments at Grandview Children’s Centre! My biggest fear is that some other daycare or children’s facility will gobble her up because she has SO MUCH TO OFFER! But just for now she’s all Liam’s! We LOVE her and she loves him – but really, what’s not to love! (insert big proud mom smile here…)

At the end of each work day I make my way to pick up Liam and he is always found HAPPY in the arms of Sal or our other Angel, Monika. These girls are truly 'heaven-sent' and we are so blessed to have them in Liam's life!

My new obsession

Anyone who knows me can attest to the fact that I have a little ‘crazy’ running through my veins. And no, not "Dexter Serial Killer Crazy", but a little "Hyperactive Kristina Crazy". And although I don’t accurately fit into the diagnosis OCD I do have somewhat of an obsessive or addictive personality. When I get something in my mind I just can’t let go! Mind you, I’m not the ‘tap the light switch 10 times before turning it on’, or the ‘scrub my hands clean until the skin breaks” type, but I do have some degree of obsessive compulsive tendencies. My latest obsession seems to be noticing, reading, learning, promoting, educating, meeting, befriending, and researching anything and everyone that in some way has any association with blindness, visual impairment, vision loss – whatever you want to call it.

Jose Feliciano (Singer/songwriter most known for his Christmas tune “feliz navidad”)
Ronnie Milsap (Country music singer)
singer Apl.de.ap (of Black Eyed Peas fame)
Peter Falk (aka: TV’s Columbo!)
Sammy Davis Jr (The Brat Pack)
And yes, closer to home, The greeter at my local Walmart

What do all these folks have in common? 

Varying degrees of visual impairment.

Liam with Aunty Karen, Summer 2010

For some reason I’ve become somewhat of a magnet for people’s ‘blind’ stories too. It’s as though they feel the need to share and say, “hey, I know someone who’s blind too, can we be friends now?” Although I make a joke of it, I do find it comforting that so many other people share their stories with me. Stories of men, woman and children living life, a FULL life, with varying degrees of vision loss. It’s becoming less of a big deal in our household that Liam has a significant vision loss. Or as Dave refers to it, “Liam’s little vision problem”. Ha ha! Hey we all have our coping mechanisms! Whatever works right?

*Baby Bocelli* Celebrates Christmas

Merry Christmas! Now where's breakfast?

Daddy helps Liam
open his first gift of the day

Poppy I LOVE my new drums!

Lots of laughs with
Aunty Keri & Aunty Karen

What to buy the visually impaired child…. The gift of music! It seemed to be the popular choice for Liam this year! And I expect, for many years to come! Santa delivered a drum, harmonica, flute, tambourine, and maracas for Liam's, and our, musical entertainment!

He really is such a 'baby Bocelli' (as in Andrea Bocelli) playing all his little baby instruments and singing in his little baby voice!!! I just love that nick-name given to him by Great Aunt Wanda! So fitting...and maybe by putting it out there in the universe he may just become the next Jeff Healey/Stevie Wonder/Ray Charles! I think Liam "Wonder" has a nice ring to it, don't you?

Palate Repair Anyone?

It’s been 7 months now since Liam’s palate repair surgery. That was definitely the most difficult of his surgeries to date. June 2, 2009 - Another early morning, we arrived at Sick Kids to check in at 6am. Liam’s surgery was the first of the day scheduled for 8am. We knew that this surgery required at the least one overnite in the hospital, maybe 2 nights at the most.

Dave and I left Liam in the capable hands of the Sick Kids nursing staff and ventured out into the beautiful June day and enjoyed a breakfast at EggSmart near the hospital. We made our way back to the waiting room and eventually we were told we could go see Liam. He seemed ok – he was lying on his tummy to allow for drainage out his mouth, he was swollen a little, but was being kept comfortable with a healthy cocktail of painkillers. Once he was moved to the recovery floor we were told he would be watched through the night by a nurse and that it was preferred the parents leave the hospital for that first night. Dave and I spent the nite at my sister’s apartment downtown and ordered pizza and watched some ‘computer’ – they don’t have cable – who doesn’t have cable? The next morning, Dave dropped me off at the hospital with my overnight bag – overnight, not overnight’s’ plural - and he made his way to work. I was NOT prepared for what I was about to see.

The morning after palate surgery

Liam was still lying on his tummy and when I turned him over his eyes were completely swollen shut. His face was puffy and he looked so sad and helpless. I asked the nurses about his eyes and they weren’t certain why this was happening, it wasn't the norm after palate surgery. They just figured it was because the doctors had checked his eyes during his palate surgery. My heart sank! I KNEW this wasn’t the norm as Liam had his eyes checked during surgery many times and nothing like this EVER happened. Why were the other palate repair kids up and eating, some were walking around – why was Liam comatose in his little hospital cot? I was told to try to keep him propped up  to help the swelling go down from his eyes and face. It was heartbreaking. He was still very groggy, on a lot of pain medication and IV fluids. By mid-day we were moved to our own room – for ONE nite… well, 6 days later we were released! 

2 days post surgery

Sitting up, 4 days post surgery

5 days post surgery

Daddy and Liam, still  hooked up
to meds and fluids

HAPPY to be finally going home!
6 days post surgery

Liam REFUSED to eat or drink anything! He didn’t eat a morcel for 6 days straight. The nurses kept him on IV fluids to keep him hydrated, but try as I may, he wouldn’t eat or drink. Eventually, after 5 days alone with Liam at Sick Kids, Dave came and stayed overnite to give me some time to recharge at home. At that point the nurses suggested to Dave that he force-feed Liam his fluids by syringe…that if Dave was able to get 10 mls into Liam by syringe we would be allowed to take Liam home. The next day Dave got 10, then 20 mls in Liam. And so started our 3 month battle of force-feeding by syringe. Liam never has taken to the bottle again – to this day he refuses to even hold a bottle or sippy cup! I was advised by Sick Kids not to force too much, as this would make Liam associate feeding with something negative – I started spoon feeding him fluids – SPOON FEEDING FLUIDS! I’m thankful to say it’s all in the past now… we went from not feeding, to syringe feeding, to spoon feeding, and thankfully now, to a sippy cup – albeit that I still hold for him – but hey, baby steps!

This surgery marks the end of our 'cleft related' surgeries for some time now. Liam will be seen again by the cleft team when he's 3 years old. The next biggie will be a bone graft surgery where bone from Liam's hip will be removed and placed in the cleft area of his palate. This will happen at around 6 years of age. The bone will assist in keeping Liam's adult teeth in place. A nose revision surgery will take place sometime when Liam is between 4 - 6 years old. Followed by many dental interventions/sugeries and possible further nose/lip revisions. Surgery will give him what mother nature didn't - a perfectly symmetrical face - even though he'll never see it. Scratch that - NEVER say never right? Who knows what the future holds...

Goggles, I mean glasses

Well, Liam's glasses finally arrived, and for a while we were doing SO WELL wearing them! When I didn't see an immediate difference in his vision or his behaviour, I became so discouraged that I stopped using them! I've since learned that kids who have had both lenses removed surgically will not see ANYTHING without the aid of some sort of artificial contact lens or glasses. Liam has had both lenses removed so in order for him to have any sort of usable vision his glasses are a must. What might seem like no degree of vision to me might be the world to him! It's not unreasonable that he can only see 1 or 2 inches from his eyes...even with his specs.

You simply can't comprehend the 'mass' of the goggles, ah-hum...glasses... from a mere picture. The term 'Coke bottles' just don't give an accurate visual of these babies! The lenses actually BLUDGE in the centre, so from a profile view, they appear dome-ish (if that's even a word). In the centre picture you can see Liam's long luscious eyelashes...that should give you some indication of the amount of magnification! In the right image you can get a very clear look at his 'brown' eye. This is interesting as he has BLUE eyes! His right eye turned from beautiful blue to brown after our surgery at Sick Kids Hospital in December 2009. His iris has now started to shrink - very frustrating that this is surgery induced - it's a build up of blood from a vitreous hemorage during surgery and subsequent scar tissue! His eye will never return to its original blue colour, our only alternative now is a cosmetic contact lens which we'll look into when Liam is a bit older.

If there was only some magical potion to make Liam WANT to wear the coke bottle glasses life would be grand! Not only are they thick, they're HEAVY! But he looks pretty darn cute if you ask me!

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.

Our Family

Our family...we are...Kristina and Dave Reid. We live in a suburb about 45 minutes east of Toronto. We've been married for 7 years and together have three wonderful sons, Lukas, Brady and Liam; as well as Dave's oldest son, Nathan.

Lukas, our eldest, is 7 years old, attends Grade 1, loves to play hockey, ride his bike, and is currently addicted to video games! Lukas is our kind-hearted and thoughtful 'angel-face'. He fits into his big brother role so wonderfully, always making sure little brothers "Braid" and "Lee-Lee" are happy.

Brady is 5 and attends SK. He is our mischievous one, we like to say he's 'spirited'!!! Anyone who knows Brady can attest to this! He can usually be found wearing his tattered and torn Spiderman costume, that is now, I think, 2 sizes too small! This costume has been well loved - but I think Santa will bring him a new one this Christmas! Lukas and Brady can be found on any given day, playing and having fun and sometimes getting into trouble! But no matter what the activity, they will undoubtedly be found 'together'.

Liam is the newest addition to our family - he's our Gemini baby, born in June of 2009. He's the quietest and most content baby you could meet. Always happy, just taking in the world around him. I've often wondered why he's so quiet, but recently I was told some visually impaired children are quiet because they are taking in the world around them - using their ears, not their eyes - to 'see' or discover their environment. He smiles when we kiss him, and loves to be held and cuddled.

It's a busy household... but we love every minute of it and wouldn't change a thing.

Liam's Journey

Liam Kristopher Reid was born Thursday, June 18th, 2009 at 7:53am at Lakeridge Oshawa Hospital. After a very LONG labour, we were finally introduced to our third son - and we were elated that he had finally arrived to complete our family of five. At my 20 week ultrasound, we learned Liam would be born with a cleft lip and palate (click here to view before and after photos, the change is astounding!). It was difficult to accept, but after networking with SO MANY other families, we realized that if Liam had to be born with a 'birth defect' (those words are hard to come to terms with when you're speaking of your own child!) that a cleft lip and palate paled in comparision to other congenital conditions. Liam was in our lives, the Sick Kids appointments began, and life went on - he fit perfectly into our little family, and his big brothers Lukas, Brady and Nathan adored him!

Almost right after his birth, we noticed that there was something wrong with Liam's left pupil, it didn't seem to ever dilate, never changed with light, always remained small, and in pictures his pupil would appear 'white'. After 3 visits to my family doctor, always being told 'he's fine, it's ok', we insisted his eye be examined more closely. It was discovered that Liam had a congenital cataract on his left eye, that if not operated on within the first few weeks of life, could cause blindness. We were immediately referred to the Sick Kids Opthamology Clinic, where it was discovered that Liam suffered from something much more than just a cataract. A congenital eye condition affecting both eyes called PHPV left him blind in both eyes. This diagnosis has been devastating to us. We were told surgery wouldn't help, that there was nothing medically to be done and we would raise our baby boy as a blind child. We left Sick Kids in a daze. I don't think any of us remember that drive home, Dave and I barely spoke, but just sat in traffic and wondered about the future of our 5 week old baby who was sleeping soundly in the back seat.

Since then Liam has had an EUA (evaluation under anesthetic) on both eyes on Sept. 8th/09; his cleft lip repaired on Oct. 28th/09; suture removal on Nov. 4th/09 and a lensectomy and vitrectomy on his right eye on Nov. 6th/09. All surgeries have been successful except his Nov. 6th eye surgery. We had hoped it would have restored some sight, but sometime during our lengthy SIX WEEK wait for surgery time, his retina had completely detatched. In an attempt to clear out his right eye and hopefully make way for some vision, our surgeon tore Liam's retina and decided that reattaching wasn't an option. Again we left Sick Kids and drove home in a daze.

But I just couldn't stop there... I researched LIam's condition and found a doctor in Detroit - Dr. Michael Trese. He operates on kids from around the world with PHPV and has achieved some wonderful results! We travelled to Detroit on Nov. 18th, and during our consultation with Dr. Trese he seemed hopeful that he could help restore SOME sort of vision for Liam. Even light perception or shadows would be incredible as currently he lives his life in complete darkness. His first surgery is scheduled for December 18th, 2009 in Detroit. His 2nd surgery will take place sometime in January 2010. These will be the beginning of his many surgeries with Dr. Trese.