Wildman Emmett!

I’m really excited because I’ve found some special needs equipment recently that would make some things so much easier (and safer) for us!

Emmett is growing to be quite a tall boy and since he’s not your typical 2 year old, we’re facing quite a few challenges already. I came across Caroline’s Cart today. This is so awesome, you have no idea. I was just telling Ryan a few weeks ago that I wished stores had carts available for children with special needs. Since Emmett can’t sit up on his own, we can’t put him in a regular shopping cart. Usually I have to do groceries by myself in the evening, or Ryan will come with me on the weekend while he pushes the cart and I push Emmett in the stroller. It would be absolutely fantastic if our stores here could get on board with this. I want Emmett to be as involved with things we do as much as possible, and this would make grocery shopping so much easier for me to get done during the week. That way we can do other things as a family on the weekend instead of groceries! There’s a spec sheet on the website so I had Ryan print a few copies out. I’ll be bringing them to Sobeys, Superstore and Walmart and hopefully talk to the managers about it. I’d like to try and get this out there so other families can see that this is available and they too can speak to store managers about it. Might be even worth contacting some newspapers to get the word out! Seriously, this would help a lot of families. Caroline’s Cart also has a facebook page so pass along the info to someone you might think may really benefit from these!

Another thing we’ve been looking a lot into lately are special beds for Emmett. Since Emmett loves to get up on all fours and doesn’t really have spacial awareness, he launches himself forward or sideways. Or when he’s feeling extremely adventurous, he gets right up on his knees and flings himself backward… or forward… or sideways. And does these acrobatics at 3am.  I bought some kitchen chair cushions to tie around the top of his crib so he can at least launch himself into those. The crib is still sidecarred to our bed, so when he does feel like doing this in the middle of the night I can catch him before he smashes himself around and settle him down.

There are two beds that I really like. The first one is The Safety Sleeper!

It’s essentially a zippered tent bed that you slip a mattress through. There’s a great coverlet on it so when Emmett rolls to the edge, he can’t fall in between the tent and mattress. In the above photo, foam pads can also be purchased to cover the poles on the outside, which is something we would need for Emmett for sure.

What I really love about it is that it’s portable! It would be so great when we travel for his appointments, visit family (which doesn’t happen very often because of sleeping situations) or go on vacations. All we need is a blow up mattress to throw in it! The photo below shows one in a hotel room.

See? FANTASTIC! We need our WildMan to be safe at night. This bed, after all said and done, will probably be around $2500. We’re currently looking into seeing if our insurance will pay for part. If they will, Social Development might also be able to help pay for some of the cost as well. Just waiting on a letter from our pediatrician “proving” why Emmett needs this. Fingers crossed!

The other bed is a Sleep Safe Bed. This one is insanely expensive. The starting price is $8500… I know, right? Craziness.

I love that the sides are high and can also be padded.

And that it comes in these fun colors!

However, this one obviously isn’t portable.

I think we’ll be aiming for the tent bed first. That one should hopefully last him for a long time and, if need be, we can look at purchasing the larger bed for him when he’s older.

Thank goodness for the internet, seriously. I’m always looking for things that will make things easier for us and for Emmett and finding the tent bed and these shopping carts made me so happy! Let’s just hope both can become a reality for us soon.

At 7:31pm tonight Emmett turned 2 years old! And yesterday at 1:30pm we were given an “official” diagnosis.

Periventricular leukomalacia (PVL)

This. This is what Emmett has. This is what I’ve been repeating in my head since yesterday, over and over again.

Taken from MedLine Plus:

Periventricular leukomalacia (PVL) is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. “Leuko” refers to the brain’s white matter and “periventricular” refers to the area around the ventricles.

PVL often leads to nervous system and developmental problems in growing babies, usually during the first to second year of life. It may cause cerebral palsy (CP), especially tightness, or increased muscle tone (spasticity) in the legs.

Babies with PVL are at risk for major nervous system problems, especially involving movements such as sitting, crawling, walking, and moving the arms. These babies may need physical therapy.

A baby who is diagnosed with PVL should be monitored by a developmental pediatrician or a pediatric neurologist, in addition to the child’s regular pediatrician.

Taken from Wikipedia:

Two major factors appear to be involved in the development of PVL: (1) decreased blood or oxygen flow to the periventricular region (the white matter near the cerebral ventricles) and (2) damage to glial cells, the cells that support neurons throughout the nervous system.[5] These factors are especially likely to interact in premature infants, resulting in a sequence of events that leads to the development of white matter lesions.

The initial hypoxia (decreased oxygen flow) or ischemia (decreased blood flow) can occur for a number of reasons. Fetal blood vessels are thin-walled structures, and it is likely that the vessels providing nutrients to the periventricular region cannot maintain a sufficient blood flow during episodes of decreased oxygenation during development.[2] Additionally, hypotension resulting from fetal distress or cesarean section births can lead to decreased blood and oxygen flow to the developing brain. These hypoxic-ischemic incidents can cause damage to the blood brain barrier (BBB), a system of endothelial cells and glial cells that regulates the flow of nutrients to the brain. A damaged BBB can contribute to even greater levels of hypoxia. Alternatively, damage to the BBB can occur due to maternal infection during fetal development, fetal infections, or infection of the newly delivered infant. Because their cardiovascular and immune systems are not fully developed, premature infants are especially at risk for these initial insults.

It is often impossible to identify PVL based on the patient’s physical or behavioral characteristics. The white matter in the periventricular regions is involved heavily in motor control, and so individuals with PVL often exhibit motor problems. However, since healthy newborns (especially premature infants) can perform very few specific motor tasks, early deficits are very difficult to identify.[9] As the individual develops, the areas and extent of problems caused by PVL can begin to be identified; however, these problems are usually found after an initial diagnosis has been made.

The extent of signs is strongly dependent on the extent of white matter damage: minor damage leads to only minor deficits or delays, while significant white matter damage can cause severe problems with motor coordination or organ function. Some of the most frequent signs include: delayed motor developments, vision deficits, apneas, low heart rates, and seizures.

Additionally, infants with PVL may not be able to assume the same positions for sleeping, playing, and feeding as premature or full-term children of the same age.[10] These developmental delays can continue throughout infancy, childhood, and adulthood.

Premature infants often exhibit visual impairment and motor deficits in eye control immediately after birth. However, the correction of these deficits occurs “in a predictable pattern” in healthy premature infants, and infants have vision comparable to full-term infants by 36 to 40 weeks after conception. Infants with PVL often exhibit decreased abilities to maintain a steady gaze on a fixed object and create coordinated eye movements.[12] Additionally, children with PVL often exhibit nystagmus, strabismus, and refractive error.

Occurrence of seizures is often reported in children with PVL. In an Israel-based study of infants born between 1995 and 2002, seizures occurred in 102 of 541, or 18.7%, of PVL patients.[5] Seizures are typically seen in more severe cases of PVL, affecting patients with greater amounts of lesions and those born at lower gestational ages and birth weights.

Another common but severe outcome of PVL patients is the development of epilepsy. The link between the two is not entirely clear; however, it appears that both genetic and early environmental factors are involved.[18] One study estimated that 47% of children with PVL also have epilepsy, with 78% of those patients having a form of epilepsy not easily managed by medication.[19] Many of these affected patients exhibit some seizures, as well as spastic diplegia or more severe forms of cerebral palsy, before a diagnosis of epilepsy is made.

So, there you have it. Lots of info, I know. If you made it through reading that, thank you.

Both neurologists seem to agree that this happened sometime during fetal development. That is more of a rarity. PVL most commonly occurs in premature and low birth-weight infants. I know I haven’t gotten around to writing Emmett’s birth story here yet, I’ve been meaning to do that. In short, Emmett was born at 41 weeks and was 8lbs 9oz. I laboured for 18 hours, pushed for 2.5, attempted (and failed) forceps delivery and then cesarean. It wasn’t a very easy labour and delivery, to say the least. Which is why I’ve been hesitant to write about it. Even though it happened 2 years ago now, it’s still very fresh in my mind like it was yesterday. And when I really get to thinking about it, I feel anxious, nauseous, sad, angry, etc…

Usually PVL is caused by decreased blood flow or decreased oxygen flow to the back of the brain. She also mentioned it could have been caused by low blood sugar, too. I also came across this, “Additionally, hypotension resulting from fetal distress or cesarean section births can lead to decreased blood and oxygen flow to the developing brain.” As far as we know, Emmett did not show any signs of fetal distress. But again, and I’ve mentioned it before, I wonder if something was missed.

This isn’t Emmett’s MRI scan, I should have asked if I could have taken a photo, but at least it will provide you with a bit of a visual.

The white areas on both sides, where the arrow is pointing, is the area of where the scar tissue is located. Emmett’s was not that bright white or large, however. But those areas are supposed to be dark/black.

Since getting the diagnosis, I’ve been feeling surprisingly relieved. What’s been making us question everything for the past two years finally has a name. There’s an explanation. I can’t begin to tell you how difficult it was not knowing what was going on, what was causing his seizures, his visual impairment, his developmental delays… it just feels like a huge weight has been lifted. It feels like I’ve just exhaled for the first time in 2 years. We know what we’re facing and we know that what we’ve been doing for Emmett has been what he needed. We just need to continue his therapies to make him be the best he can be!

Today, I am so thankful for that little boy. I am so thankful to share him with Ryan. I am so thankful to have a husband that absolutely adores his little boy. Ryan is absolutely wonderful with Emmett. I’m thankful that we finally have an answer to the endless amount of questions we’ve had. Last year I felt a little sad on Emmett’s birthday. I kept going back to when he had his first seizure. To the NICU. To the ER. Back to the NICU. Trying to recover from a cesarean. Test after test with no answers. Sad that I had no idea what was in store for any of us. Even though the memories of his birth are still fresh in my mind, this year it feels a lot sweeter. I’m proud of how far I’ve come, how far we’ve all come. Emmett works so hard, I’ve never seen such determination. And I know there are some very trying times ahead, but I can’t help but feel so thankful for it all tonight.

Emmett will be turning TWO on Thursday! We had a birthday party for him on Saturday with just immediate family. I had a very talented past co-worker draw up a birthday poster for his birthday party. It’s AMAZING! I love it so, so much.

Of course there were cupcakes!

And Emmett got a whole new summer wardrobe, which he desperately needed. He seemed to like his new clothes!

And a jump-o-lene from us! He’ll have fun bouncing on his bum in here, I think. Once Ryan is finished his playroom/sensory room this will go in it.

Even though we only had immediate family at his party (our parents and Ryan’s sisters), it was still really rough on Emmett. He missed his afternoon nap because there was too much going on. Lots of voices and noises kept him awake. Since he has a visual impairment he’s really sensitive to sounds. After everyone left he started having a lot of seizures and couldn’t even fall asleep until 11:30pm that night. He had a decent nap yesterday morning but still had a really restless sleep last night and only finally fell asleep and midnight. Today he’s been having a lot of seizures again. It makes me so sad. I get so nervous when we have more than 4 or 5 people in the house at once because I know it’s hard on him. We didn’t even invite any of his little friends and that makes me even more sad. After this party it kind of makes me not want to have anymore for him! It just completely wipes him out and he gets so many more seizures. I hope that one day he won’t be as sensitive so we can have celebrations for him and not have to worry about what will happen. I’m watching him on our video monitor right now and he’s having yet another restless sleep and is pretty much wide awake again.

We’re heading to Halifax/IWK again this week for Emmett’s eye exam and to speak with the neurologist about his MRI that he had in March. That trip will screw him up even more, too. He never sleeps well when we’re not home and his eye exam is during his afternoon nap. ARGH! And of course we go to Saint John next week for the 24 hour EEG. Everything is hitting at once and I can’t wait for next week to be over. Hopefully we can get Emmett back on schedule and his seizures settled down a bit.

We’ll be in Halifax for his actual birthday, so I will bring some balloons and we can have a little birthday celebration in the hotel room. Our crazy WildMan is almost officially two years old. Amazing

We have entered the exciting world of gait trainers! What are gait trainers? Well, here’s a good definition from good ol’ wikipedia:

A gait trainer is a wheeled device that assists a person who is unable to walk independently to learn or relearn to walk safely and efficiently as part of gait training. Gait trainers are intended for children or adults with physical disabilities, to provide the opportunity to improve walking ability. A gait trainer offers both unweighting support and postural alignment to enable gait practice. It functions as a support walker and provides more assistance for balance and weight-bearing, than does a traditional rollator walker, or a walker with platform attachments. It also provides opportunities to stand and to bear weight in a safe, supported position.

Lately we’ve noticed that Emmett has been more interested in standing (while we hold him under his arms) than trying to sit or crawl. When he gets up on all fours he goes straight up onto his knees. He just wants to get up! So we asked about gait trainers at one of Emmett’s last pt sessions and we gave it go! When he first went in it at pt he sped forward almost right away. It was so awesome! I really wish I would have gotten a video, but I did get some photos while he was standing in it. And lucky us, we got sent home with it so Emmett could practice!

Bear with me, lots of photos! The first few are of Emmett and Ryan having some snuggle-relax time waiting for the gait trainer to make it’s official appearance. It’s so nice to see our big boy standing upright!

.
We’ll see how it goes for the next two weeks and if we feel he’s ready for one then we’ll look into getting one for him. I’m hoping we can get one on loan from the Easter Seals if they have one, because this one in particular, after all said and done, is about $2,000. Sigh. Special needs equipment is so !@#$ expensive it’s unreal. And extremely frustrating. Hopefully I’ll be able to get a video soon! He’s been having quite a few little seizures over the weekend, so whenever we put him in the trainer he has a hard time concentrating on what he’s doing.

In other news, we have an appointment at the IWK coming up again. We’ll be meeting with the neurologist to discuss Emmett’s MRI results and then he has an eye exam after. His eye exam was supposed to be last December but they’re apparently very short staffed in the ophthalmology clinic so we’re finally getting in now. Only thing is that we’ll be there for his 2nd birthday. I asked about rescheduling but it won’t be until fall, and maybe even winter, before they can fit us in again. We’re doing his birthday party with family this coming weekend, though! I can’t believe our Wild Man is already 2!

We had some really nice weather today so we brought Emmett outside to hang out in some dandelions.

.
Oh, how I absolutely adore this little boy.

We met with Emmett’s neurologist in Saint John yesterday. And wouldn’t you know, he hadn’t received the MRI results and had no idea there was any issue. HUGE SIGH. I really, really should have called his office to check in to see if he had received the results. I just figured 5 weeks would have been plenty of time. Everything is transferred electronically for frig sake. He didn’t seem very impressed that he hadn’t received anything yet, either. He had one of his nurses call the IWK to see if they could send it asap but, of course, no one answered their phones. No one ever answers the phones at the IWK. For us, anyway. ANOTHER HUGE SIGH.

Anyway.

Before we met with the neuro Emmett had a 20ish minute EEG. He is so good when he needs EEGs. Most kids scream and freak out and need sedation. Emmett just hangs out while the leads are put on his head. He usually tries to roll around but with Ryan and I on either side of him we keep him still. All we have to do is show him his light wand and he’s as good as gold.

We then brought the neuro up to speed with everything and I went through my giant list of questions. We sat in his office talking about everything for an hour. Emmett’s EEG was basically the same as the last few. Not better, not worse. Still a lot of epileptic activity. We asked if Emmett would be a candidate for brain surgery and he doesn’t seem to think so. Emmett didn’t have an actual seizure during the EEG, he only saw all the “in between” activity, and he said sometimes it came from the right side and sometimes the left. But, in about a month, we’re going to go to Saint John for a 24 hour EEG to see if his seizures all start on the same side or not. If they do, then he’s a candidate. When he said he didn’t think he would be a candidate for the surgery my heart sank. But at the same time I felt relieved, it was very strange. I wanted to cry and be upset but at the same time say THANK GOD WE’LL NEVER HAVE TO PUT HIM THROUGH THAT! We’ll see what happens when he has the 24 hour EEG. He did say that if one side showed a big chunk of the seizures and a few came from the other side, it might still be possible, but we should seek a second opinion. Maybe a trip to Toronto or someplace in the states, who knows.

When it came time to discuss the scar tissue that showed up on the MRI, I asked him if the seizures caused it. He basically flat out said no. And that it was likely something that happened during development, and as the brain is much more mature now, we can finally see it on an MRI. This was the first time that he’s actually given us a straight answer and answered quickly. Usually he kind of takes a while to answer and carefully chooses his words and they’ll always include either “We can’t know for sure” or a “Maybe” or “It’s hard to say”… so for him to come right out and say no, and that it was something that happened during development, it really took me off guard. And of course sent me back into that mindset of, “Is this my fault? What did I do?”

It was hard hearing that it was probably something that happened during development. I had my share of moments over the last two years wondering if it was something I did that caused all of this. I know these things happen and you can’t do anything about it, but it happened to us. I was the one who carried him for 41 weeks. It’s hard not to want to blame yourself. As far as I know, I did everything “right”. But again, we really don’t know for certain and will never know what exactly happened. And it doesn’t matter. We can’t go back and change anything.

Onward and upward.

We also got a prescription for his carnitine deficiency. And I must say, I’m really happy we have good insurance coverage because if we didn’t we’d be shelling out $150 a month for this supplement. I won’t be able to give it to him until the dietician works it into his diet and makes adjustments to all of his recipes. I’m sure it will contain some carb, hopefully not too much so it doesn’t interfere with his vegetable and fruit amounts.

He also agreed that the scar tissue is what’s to blame for his developmental delays, visual impairment and seizures. Exactly WHY the scar tissue is there, we still don’t know. But at least we’re finally getting some answers.

I cannot believe our little dude is going to be 2 years old next month. It honestly doesn’t even feel like one year has gone by, let alone two. Birthday planning is underway and his party will most likely consist of just immediate family. He gets pretty overwhelmed with a lot of chatter in once place so hopefully all goes well.

Tomorrow Emmett has a very special playdate! I’ll leave it at that and make another update soon.

Let’s see, what have we been up to.

A LOT.

First of all!

-EMMETT FINALLY ATE A SOLID FOOD/KETO MEAL! AHHHH! After exactly 2 months of not wanting food since he got sick back in February. Here’s hoping he’ll eat more meals tomorrow!

-He is getting up on all fours a lot more!

-His vision has started to kick in again! He’s been tracking objects, looking at toys we present to him and making some eye contact and looking at our faces!

-He has an interest in standing again! While we hold him up, of course.

-EXCLAMATION!

Second of all, why did no one ever tell me how scary croup is?! We ended up taking poor Emmett into the ER last Saturday night. We had no idea what was going on. He had a bit of a runny nose earlier that day and by dinner time he had the barky cough and his voice sounded so, so awful. He was having such a hard time breathing when he went to bed. It hit him so hard and so fast. I couldn’t believe how terrible his breathing was! I wasn’t that scared since he had his first seizure when he was 2 days old.

We got to the ER at 9:30pm and got home at 4:00am. The doctor thought he was going to have to be admitted so I headed home around 1:30am to get some sleep and pack up his meds and ketocal for breakfast. But around 3:00am his chest really cleared up and Ryan called me to go pick them up. He was given a few nebulizer masks and a steroid to bring the inflammation of his larynx down. His voice was back to normal Sunday morning and now he’s fine! It left just as quick as it came, so weird.

Last week we had lots of appointments, one being with a social worker from social development. We found out yesterday that Emmett’s case has been accepted. A social worker is supposed to get in touch with us in a few weeks. More info on what that’s all about here.

We also had our APSEA appointment and she brought him a resonance board! I’ll let you be the judge whether you think he enjoys it or not. He even does a Michael Jackson impersonation at the 0:26 mark!

A resonance board is a flexible sheet of wood that gives tactile and auditory feedback whenever Emmett moves and especially when he kicks it. The kicking makes a sound and vibration and encourages him to repeat the movement. Kinda neat.

This week I had to cancel Emmett’s PT because I wanted him to rest after that horrible croup thing. His next appointment is only on May 9th. Having to reschedule his PT is one of the reasons why I really hate when he gets sick. And next week it’s our appointment in Saint John with the neurologist for a regular half hour EEG and to discuss our millions of questions about his MRI results. I’m feeling a bit (a lot) anxious for that. We’re also seeing his pediatrician next week so we’ll be able to talk about his MRI results a bit then, too. And we see APSEA again next week as well as the registered nurse. Another jam packed week!

Emmett’s also been getting pretty spoiled in the last few weeks. I realized his high chair was only a 33lb weight limit and he’s at 30lbs. But since he’s always rocking and smashing into it, that wears on the thing even more. His memere and pepere bought him a fancy new high chair that has a 50lb weight limit. So hopefully this will last for another little while!

.
His thumb cracks me up. Emmett approved!

.
Caught him right before a sneeze. He was still pretty stuffed up when these were taken.

.
We also bought a new stroller. A DOUBLE stroller! For Emmett and baby #2 on the way! I did quite a bit of searching for strollers. We needed something with a decent weight restriction for Emmett and one where we could have a rear facing seat so we can always see Emmett to keep track of seizures. We decided on the Baby Jogger City Select (in red)! Each seat has a 45lb weight limit and 16 different seating arrangements.

.
Emmett also got his first piece of special needs equipment – a bouncy chair! Also a birthday gift from memere and pepere! Emmett is too big for any of the typical chairs that are sold in stores because most kids are independently sitting and walking by the time they’re… um, I don’t even know, exactly. But you get the point. The chair we got for him though is just a little too big for him right now. Dangit! But he’ll grow quickly and fill it up soon. The chest restraint hits him right at the chin right now. He kinda likes to chew on it, though. I couldn’t stop laughing when we first put him in it. He had no idea what to do with his arms, haha.

.
“Where do my arms go?!”

.
Rollercoaster ride?

.
His feet don’t quiiiite touch the ground yet. I think we’ll put something under him so he can use his feet to push and make the chair bounce.

.
What a turkey. Love this kid!

.

Last but not least, Emmett got a care package from Auntie Trish that included this really awesome book!

.
Told you he’s been getting spoiled! But he deserves it all, of course.

As you can see we’ve been keeping really busy here at the Valdron household. And busy is a good thing. It keeps our crazy minds occupied.

Last Wednesday I was reading a blog update from Love That Max and she linked to another blog update about a little boy named Gavin. She wanted us to all rally around this family and give them love and support.

This was Gavin and his mom, Kate, last Tuesday.

.
Gavin suddenly had a seizure the next day. He then went into cardiac arrest and was in critical condition.

I “liked” Kate’s facebook page, Chasing Rainbows, and made my way over to her blog to read about her family. I couldn’t believe what I was reading. They had been through so, so much. Much more than any family should ever have to endure. I felt instantly angry because it just wasn’t fair that they had already been through so much, and now Gavin was slipping away.

When I liked her facebook page, there was a little over 400 likes. Today there are 13,500+ likes. Love, support and prayers are pouring in for the Leong family from all over the world. So many parents of children with special needs kiddos said they saw Gavin in their little boy or little girl. And it’s true, I see Gavin in Emmett. The strength and determination our kids have surpasses all comprehension. The amount of love and support we get from friends, family and strangers is one of the most amazing things I’ve had the privilege to experience. These kids change lives and when one’s life is taken away much too early, and so suddenly, the special needs community grieves as one collective whole.

I have been thinking about this family non stop for a week and sobbing every day. Gavin was the last thing on my mind before I went to bed and the first thing on it when I’d wake up. Every morning I would hope for an update that he would suddenly be better.

But yesterday, on his mother’s birthday, he was officially pronounced dead. People had been asking where they could send flowers and donations, but Kate posted this:

Ed and I will be announcing our choices for “in lieu of flowers” donations to honor Gavin in a few days, but today is my birthday and this is all about me. I’ve come up with a special, totally FREE way to honor my sweet son who could inspire the most profound emotion without ever saying a word. I’m asking you to help someone… document it with words and or a photo… and place it on the Chasing Rainbows Facebook Page. Then be sure to check the page often to get inspired by the outpouring of love. Here are some great ideas for you… Find a special needs classroom in your community. These are usually low funded and always looking for donations. Perhaps you have toys your kids don’t play with anymore that could be used in the classroom or during therapy. Random crayons that are laying around. I know we always needed rug gripper to place under Gavin’s behind when he sat – that’s a good need. Do you know a special needs Mom in your neighborhood? Church? School? Tell her you’d like to make dinner for her family. What night would work? Then tell her the only requirement is they have to give a “cheers toast” to Gavin during dinner. Help someone struggling to unload groceries into their car in the rain. Donate clothes to a women’s shelter. Check with your local children’s hospital for volunteer opportunities – even if it’s just for two hours of your life. Save all of your magazines and bring a big stash to your local hospital. You have no idea how helpful that is to parents who spend days, weeks or months (as I did when Gavin was a baby) sitting in their child’s hospital room. These are just some ideas… be creative! And think of Gavin when you do it. Share his story with the person you are blessing. Tell them that Gavin Leong changed the world with little acts of courage, determination and a sweet smile… without ever saying a word. And then ask them to pay it forward to honor his legacy. This would be the best birthday gift you could give me. There is no time frame – you could post something today or a year from now or five years from now. Thank you for helping me to honor my amazing little boy. And feel free to share this anywhere you want!

If you feel inspired to do some good (and who wouldn’t, really?) have at it! I haven’t decided what to do yet but when I do I will post it to her facebook page.

Kate has shown so much strength and grace through all of this. She and Ed are amazing parents and all I want at this point is to give them the biggest hug. I sent Kate a message on facebook and I hope my words offer her the smallest bit of comfort. If you’d like to know more about the Leong Family, here is her blog. Just have ten or so boxes of tissues handy.

Emmett will be turning 2 next month and I’ve been planning a SuperHero themed birthday party for him. Kate referred to Gavin as her SuperHero, too. I think Emmett’s birthday party can also serve as a tribute to all the SuperHeroes out there like Gavin. There are so very many.

Rest in peace, Super Gavin.