Dang, where’d the year go?

Holy crud it’s almost 2017.

Vivian is 2.5 years old now. And acting like a threenager.

There is so much to update you on – I really don’t know where to begin this time!

Firstly, we’ve moved. We needed more space, and a house that wasn’t an oven in the summer time. We needed to reclaim our lounge as a lounge and not a therapy room.

We are smitten with the new rental. We would love to buy it one day.

Viv’s new room is a bit bigger than her old one, which is fantastic. We need a new bed for her already, as she fell out of bed the week before last. Her old room couldn’t accommodate a standard single bed.

Before you ask, her bed was on the lowest position, so she wasn’t hurt, just pretty scared. Thankfully she didn’t catch the corner of her side table with her face on the way down. Unfortunately the bed she has (which I adore, because it actually looks like a bed you’d find in a home, not a hospital bed) can’t be adapted to make the sides taller, so we’re looking at bigger, more long-term options.

She also has a spare bedroom all to herself for therapy and larger toys. It’s working out really well, and we’re not tripping over toys or equipment anymore. And the house isn’t cluttered because there’s actually room for everything to have a place.

Vivian is loving the new house as well.

She has changed so much in the last 6 months. When I look back at pictures of her I can’t believe how much younger and smaller she looked. And how much hair she has now. Curly, curly hair.

vivian-happy-stretch

Where to start on Vivian updates!

Neurologically: She hasn’t had a seizure in 2 years. Woo hoo! I need to get a picture to mark that special occasion. It’s hard to get a non-blurry picture now because she is so mobile!

She has an official cerebral palsy diagnosis. Her pediatrician actually listed it in one of her appointment notes and didn’t tell us. I questioned when we’d get a diagnosis at our next appointment, because I don’t bother reading the diagnoses list on her reports and she said she was sure she’d already listed it in previous reports. I was expecting at least some announcement of that to us as Vivian’s parents, but I guess she thinks we’re the type of parents to already know because we read so much. Not much ceremony to it. When I asked her what kind, as I thought she would say spastic quadriplegic, she said spastic or possibly mixed. Although now that I have read through the different kinds, I think Vivian would have double hemiplegia/hemiparesis.

What does that mean? There are a lot of different types of cerebral palsy, but this kind means that Vivian’s brain damage affects the way her body moves (the cerebral palsy part) in all four of her limbs (the quadriplegic part). And that she has mixed tone, or spasicity, in her limbs (the spastic part). So her arms and legs will often tense up, like when she’s excited or upset, or concentrating on something.  But because her right side is more affected than her left side, I think that’s where the double hemiparesis comes in (all four limbs affected but two on one side more than the other side).

Physical development: She is sitting up now! Mainly w-sitting, but sitting. And high-kneeling. And bouncing. And almost butt-scooting because her bouncing has such momentum :) I’m hoping she doesn’t figure out that she can butt-scoot because I do want her to crawl for a bit.

She is crawling, about three ‘steps’ at a time, if something is just out of arms’ reach. If it’s further away than that, she prefers to creep along the floor using her arms and dragging her legs. Still rolling all over the place, but now with much more determination and purpose.

She is able to stand supported and lean against things for a while now, and also able to sit on her foam steps.

vivian-sitting-on-steps-with-dad-and-mr-fox-crop

Her physical therapist sent back her standing frame because Vivian didn’t need it any longer and is starting to show signs of shifting weight from one leg back to the other, so the therapist thinks Vivian will eventually walk. She is not wanting to get Vivian a gait trainer just yet, because she thinks Vivian may lose the instinct she already has to shift weight and walk from her hips instead of starting to lead and walk with her hands supporting her weight on a gait trainer.

She still uses her left side more than her right. We are still working on trying to get her right hand into the action more. She has started weight-bearing on it and opening it up some of the time when she’s four-point kneeling. Her physical therapist and occupational therapist have ordered some new wrist braces for her to wear while she sleeps, as well as some neoprene braces to get her thumbs open more because Vivian prefers holding her thumbs in very close to her hand, even while grasping things. We should hopefully get those soon.

She is still in the same pair of Piedro boots we got last summer, but now she has Leap Frogs orthotics to wear in them as well, which provide more support around her arch and inner ankle area.

And she is very, very tall. She definitely has Ben’s genes in that department. She’s over half my height now!

Hearing: Vivian has started to refuse her hearing aids. We are not sure exactly why, but our guess is her hearing has improved. Her hearing specialists also think this could be the case, because her hearing loss is/was conductive and not neurological. We will be getting a new auditory brainstem response (ABR) test done when Vivian has dental surgery in the next few months.

 

She seems to hear her favorite songs if you sing the very quietly, but if you whisper, she doesn’t really respond, so I think that may be her threshold. I’m sure it’s more complicated than that but I can only go on what I have available to me (my crappy, off-key singing).

Vision: Vivian is no longer wearing glasses (she refuses). The ophthalmologist doesn’t think they’ll make any difference and is confident Vivian can see without them, so that could be why she is refusing them. He is also not concerned that one of her eyes still turns in sometimes, as it’s intermittent and not a permanent turn. He’s not worried about her losing sight in this eye or using one eye more than the other at this point.

We also went up to Auckland last month to visit the BLENNZ Homai Campus for an official assessment. It was pretty full on, especially after having to evacuate our home in the wee hours of the morning we were due to fly out. Vivian did amazingly well on the flight up and down, so well that we are planning to save up for a trip to the US, hopefully within the next year. We do think it’ll be easier on Vivian and us to travel while she’s young for such a long flight.

Merry-go-round! #spinning #hopeforvivian #blennz

A post shared by Gwen (@gwenami) on

 

We came away from that visit with an official cortical/cerebral vision impairment (CVI) diagnosis for Vivian, and confirmation that we have been doing a lot of great things already to aid Vivian’s vision. We also got a lot of good knowledge about how to continue improving her visual environment and how to help her knowledge of the world around her, which I might go into a bit more in another post.

Dental: Vivian has almost all of her teeth in now, except for 3 of her 2-year molars. She also has a temporary cap/seal on one of her front teeth and a failed one on the tooth next to that one. Her hospital dentist has put her on the waiting list to have her molars capped, because kids with HIE are more likely to have enamel defects like the one in her front teeth, in their molars.

vivian-smiledial-sensory-garden-sitting

It was very hard to take her to the appointment to get the temporary sealant put on, but Vivian did extremely well. I wish we could have explained to her what was going to happen, though. It was really rough to see her so unhappy but she recovered very quickly.

Getting her molars capped means she’ll be going under a general anesthesia, which is when the ABR test will be done as well. I also want to have her upper lip tie released during that surgery because it would make brushing her front teeth so much easier. I know that sounds horrible to say, but I think we could have prevented some of the decay on her front teeth better if she didn’t have this upper lip tie (it’s a pretty big one). The dentist thinks he may also need to pull the tooth that has the failed temporary seal on it as it has had some rapid decay due to the enamel defect on it.

Eating: Still on the soft lumps and no dry or finger foods. Vivian is also still at the point where she will guide a spoon to her mouth but will drop it immediately when it hits mouth-level. Or she will refuse to feed herself and throw a tantrum now if you ask her to. We have a lot of work to do in this area, and I pushed to get this as a main goal for her therapy this term, so I hope in 6 months that we’ll have made some progress.

I also want us to work on getting her to drink out of a sippy cup or a straw cup but I think that might be a year of work. There’s only so many hours in a day.

Prioritizing goals is a fucking bitch.

Communication: Vivian is still ‘non-verbal’, but she definitely can communicate in other ways. She tells us when she’s happy and when she’s sad, when she’s angry and tired. She definitely can say no. You can figure out what she wants, but only if you know what you’re looking for, unless it’s blatantly obvious.

 

We will be getting help from TalkLink Trust very soon on finding an augmentative and alternative communication (AAC) system to help Vivian communicate with us so she can say what she really feels instead of us only grasping the most basic of her needs and wants. So she can have her voice, as she should.

It’s very exciting and sort of overwhelming at the same time. It’s going to be a lot of work but it will be so worth it. Again, enough details about that to write a separate blog post really.

Overall health and sleeping: Still having major, nightly trouble with sleep and discomfort, and no closer to unlocking the solution. It sucks so bad to see her in discomfort at night and not being able to help. Her pediatrician wants to do a gastroscopy to see if it’s reflux-related. I would like to rule that out as well. We had another appointment with the neurologist who previously treated Vivian, to rule out seizures. He took a look at videos of her movements and determined it wasn’t seizure-related, as during the discomfort and kicking episodes, she’s still conscious and can coordinate a pacifier-finding mission while crying. We figured as much but it’s always good to get that officially crossed off the list.

Other than that, Vivian has been pretty good. We’re lucky to have only had 2 colds (that I can remember) this year, the latest one hitting last week and still lingering.

I think that’s everything covered. I am sorry for the lack of blog posts. I started a new job, in a new field, in June and it has taken some learning and adjusting to get settled in enough to have mental energy to do anything else than unwind when I got home.

We hope you have a very merry holiday season and a happy new year. We attempted a picture with Santa but the cold she got last week meant she wasn’t feeling it on the day we were scheduled to see him. We might try again this week.

Bring on 2017 and more milestones!

3-Month Catch Up!

After my last post I sort of buried my head in the sand for a bit and let three months fly by with no updates. Oops.

Work has been very busy and I’ve become a Jamberry Nails independent consultant, which has been great fun so far and has given me some me time back. It’s been awesome having kick ass nails at a discounted price, too! Makes me feel more human on the bad days. I’ve also been going back to the gym, on days where Vivian’s gotten good sleep the night before, which hasn’t been a lot lately, but the past couple of weeks have been better.

It’s hard to remember what has happened three months ago, so this will be a bit jumbled.

Firstly, Vivian hit a year seizure free! Exciting!

Vivian One Year Seizure Free

 

Sleep (and other stuff) update: In early October we got her MMR vaccine, so she’s now caught up on all of those. That went as badly as you could expect – spotty rash about a week later. A few days after that a fever and just very grumbly overall. She had some good sleeps after that where she slept through from about 6pm to 6am and she was like a different baby the next day. So relaxed and chilled out compared to usual, and so much more focused during therapy. If only every night was like that!

Her first four molars came in around this time, so sleep again went out the window. Currently, only her bottom two molars are all the way through. The top two are taking their sweet time! Ben also was having teeth trouble of his own and was at the dentist every week for about 4-6 weeks straight. Fun times all around!

In late October, early November, Vivian started getting really constipated and having trouble with hard, formed stools that she really had to work to get out. Around this time she started sleeping even worse. Late night parties, crying, kicking, back arching. It was not fun at all. I thought it could’ve even been restless leg syndrome or spasms waking her as she genuinely was upset and not just wanting comfort and she would doze off and then jerk awake by bringing her legs up to her stomach. She was definitely in pain a lot of the time and it was really hard on all of us.

It was so obvious she was exhausted and wanted to go back to sleep but none of our normal tricks were working (singing, rocking, bouncing). It really took its toll on Ben and I, but mostly Ben and Vivian, as he tried to let me sleep because of work, bless him.

We had a check up with our hospital pediatrician in November, but saw one of the doctor’s registrars instead of our actual pediatrician, because she herself was sick. The registrar suggested we up Vivian’s Lactulose dose from 12ml a day to 20ml to help pass the stool. We were concerned about this as Vivian already struggles to get enough fluids in. We are still working on teaching her to drink water from a cup and she refuses water from a bottle. Lactulose should be taken with a full glass of water because it sucks the water from your system into your bowels to soften your stool.

Well, after this, her sleep got even worse. She would bring her knees up to her stomach and just thrash around and cry :( At this point we didn’t realize it was probably the Lactulose causing her to have stomach cramps and really bad gas. Someone suggested we ask our therapy team if they had any continence nurses who worked with them. Normally continence nurses don’t see children as young as Vivian, but when the nurse heard that Vivian was on such a high dose of Lactulose, she was quick to say that amount would cause even an adult to have some really painful side effects and suggested we try a different medication, Movicol.

So we did, and the result was pretty much immediate. Over the past two weeks we’ve had a good handful of sleep-throughs after some early waking for a bottle, which we haven’t had for almost three months. It’s been great! And Vivian’s had softer, more manageable stools. Winning all around.

Equipment update: Vivian got her new bed in the end of September; it’s fantastic. We transitioned her from the hammock over to the new bed pretty much straight away and she took to it really easily within the first night of trying. I got over my mopey feelings about it once I saw how happy she was in it.

We also got a GoTo Seat for Vivian, but haven’t really had a chance to get out of the house and use it anywhere! As soon as we got approved to get this seat, the makers released the new and improved version (that isn’t available in NZ yet, boo!), so Vivian has the older version. It’s basically a portable, high-backed seat with a five-point harness and sides that come in slightly to keep Vivian from slouching to either side.

And we are still working with Vivian to spend time in her standing frame each day. We ended up keeping the second one we tried, which is on wheels and has a removable tray that can be angled towards Vivian. It’s a better model than the first one we had (not on wheels, no tray/work space attached).

Vivian Standing Frame

And Vivian has some new kicks for the summer, a sandal version of the Piedro boots she was wearing over the winter. These are only on loan until we get the pair on order for her in the next size up; fingers crossed she doesn’t wear them down too much in the next few weeks!

Hips update: Back in October (or was it September?) Vivian was examined by the “hip lady’ – a physio who specializes in orthopaedic health (I think?), to see if her hips were developing correctly. She wrote a letter about her exam…which explained how Vivian’s hips flex and at what angles and a lot of stuff I don’t fully understand. She didn’t seem too concerned with Vivian’s range of motion, but because Vivian isn’t walking or crawling, referred her for hip x-rays.

Apparently a letter was sent out to us with a date for said x-rays but it never arrived (surprise, surprise) and thankfully the hip lady followed up on Vivian missing the x-rays with our therapy team at the Champion Centre. If you miss an appointment here, nobody calls you. You’re labelled as a ‘no show’ and it’s up to you to get referred again and rescheduled for a future appointment! Pretty awesome, considering we had no communication reach us about the appointment, right?

We mentioned this to the registrar at Vivian’s pediatrician appointment and she was able to pull some strings and get us in for x-rays that afternoon while we were at the hospital. They came back fine, from what we’ve heard (no news is good news?), so it sounds like Vivian’s hips aren’t shallow or at risk for dislocation right now. Given how many times we’ve fallen through the cracks in the system, I’ll be requesting copies of the notes to see anyway, for my peace of mind.

Weight and height: I think I mentioned previously that we were still working hard at getting Vivian to gain some good weight – we’re still working on this, but the dietitian is happy with our progress.

Longlegged Vivian

I can’t remember how much she weighed at the doctor appointment, but I think it was just under 9kg (so she’s finally doubled her birth weight!), and she is 80cm tall. Half my freaking height, and not even 2 years old. Ridiculous. Thanks, Ben’s genes! So she’s in 18-month sized clothes right now, which are loose on her but tall enough for her. A string bean, she is.

Eyes update: At our last ophthalmologist appointment, the doctor downgraded her lenses to a weaker prescription. We got transitional lenses because Vivian’s eyes are still pretty sensitive to sunlight. I really hate them because they’re dark even indoors and we usually put her in sunglasses outside anyway. He also said she most likely wouldn’t need surgery to correct her strabismus but it’s not always very apparent, and I’m wondering if it wasn’t really on the day he saw her. When she’s tired, very excited, or focusing on something very close to her face, there is still a strong inwards turn to one or both of her eyes. Another thing for me to follow-up.

Vivian Reading BLENNZ Book 2

BLENNZ sent some really awesome, handmade books made especially for Vivian from the Jellybean Club (I’m guessing it’s a group of lovely individuals who volunteered their time to make the books for kids with vision impairments).

They have lots of textures and just one main image/item on each page, which makes it easier for Vivian to see in comparison to regular books. She adores them and will spend up to an hour exploring them with her hands, but mainly her tongue.

Vivian Reading BLENNZ Book

Eating update: Vivian is still going strong on eating soft solids and we’ve mastered the art of eating soft lumps in her food as well, as long as the food itself is pretty wet. She still doesn’t like to really touch her food or bring it to her mouth on her own, but is pretty accepting of almost anything on a spoon.

Vivian Eating Al Fresco

On Christmas she tried her first taste of turkey, and scalloped potatoes (with ketchup, of course). She definitely loves ketchup! Turkey she could take or leave. With foods like that, we have to actually give her a very tiny piece and shove it past her tongue, into the side of her mouth, or she’ll just spit it out when she thrusts her tongue.

She’s started liking oatmeal for breakfast, with finely chopped dried cranberries (it’s what I could find in the pantry). No cinnamon though! It’s the only thing we can peg down that she dislikes in store-bought baby food.

Therapy updates: Vivian is rolling both ways like a champ now. Shortly after my last post she really started going for it! Sometimes she still gets her arms stuck behind her when rolling from front to back and I fear she’ll dislocate her shoulder because she just keeps trying to roll over on them. I think we need to work on this while I’m home this week. Here’s a video from the week after she decided she wanted to roll both ways:

We’re still working on sitting up unassisted, but Vivian is making some good strides there. Last week, she sat unassisted for about 15 seconds, which is her current record. We’re also working on getting her to open her right hand and bear weight on her right arm while sitting, and working on developing her protective reflexes that would mean she could stop herself from falling over while sitting. It’s been slow going in this department but she is bearing weight more and more on her left side. We hope her right will follow.

Vivian Sitting at Champion Centre

Now that she’s rolling both ways, she’s spending a lot more time on her tummy than before, and is starting to bear weight through her left arm and push her torso up. She has been opening up her right hand a lot more than before when on her tummy and reaching with her right, which is great. We also want her to bear weight on her right arm here, too. She’s also been bringing her knees up every once in a while, but never while she’s bearing weight on her arms. One day, we hope! Then she can start rocking and that leads to crawling.

Vivian has started seeing an occupational therapist (OT), who is really lovely. Vivian adores her and I think the way she approached Vivian initially has a big part in this. She wore the same top every time she came over, and always approached Vivian from the same side, and never ever got right in her face, taking into account Vivian’s CVI (corticol vision impairment). She is working with Vivian to get her to understand her own body and to explore new & different toys, and is also completing a sensory profile on Vivian.

Vivian’s speech language therapist (SLT) has given us Vivian’s very first switch, which we can record messages on. We are working on Vivian calling us using the switch; so we might record Ben saying, “DAAAAAD!” and if Vivian is playing on the floor in the living room and she hits the switch, he’ll come in and see her. This is only a week in so we haven’t seen much to report back with but will keep you posted.

Other fun stuff: 

Vivian likes to finger paint! She tried it for the first time at the Champion Centre back in November, to make some Christmas decorations, and we’ve done it again at home with her once. Will be doing a lot more :)

Vivian First Fingerpainting at Champion Centre

We went and saw Santa for the first time in early December at a special ‘Sensory Santa’ session. They booked appointments for kids like Vivian before the mall opened, so no crowd, no mall music, and no waiting in line. She had a hellish night before so I was going to take her by myself and let Ben sleep, but he joined us and it went really well.

Vivian's First Picture with Santa

She was a bit of a wiggle worm and although Santa had her on one leg at first, he ended up having to hold her pretty securely in the middle of his lap to keep her from arching backwards. His beard was pretty funny and it looked like it was tickling her so she had a bit of a grin without us needing to get her to smile, which was great because I had to stand so far away from her I couldn’t even get her attention. The sounds were bouncing around the open area of the mall and she would’ve had a really hard time hearing us trying to get her attention.

She fell asleep immediately after getting her picture taken and we walked around the mall while she slept. Ben and I grabbed breakfast together in the food court and it almost felt like a date. It’s the first time we’ve actually been out and about, like a normal family, instead of going to and from appointments with Vivian. It’s hard to believe we’ve never taken her to the mall, or even into a grocery store before that day.

We had a quiet Christmas at home with Vivian; we’ve just been focusing on making every day a good day while I have time off of work. Ben’s parents came over to exchange gifts and brought us some really yummy food and then headed to Ben’s brother’s for Christmas lunch. We would’ve gone, but our car is in the shop and Vivian’s car seat is in our car. I got to catch up with my family back home via Facetime on Boxing Day, which rocked, and Vivian and I have been taking walks every day. It’s good exercise for me while I can’t get to the gym and it’s great to get Vivian to sleep :)

PHEW. I think that’s it. I’m sure there’s heaps I’ve forgotten.

Wishing you a very happy New Year! Much love and drooly kisses from Viv ;)

A Continuation of Firsts

Melodramatic post alert.

I was talking about all sorts of firsts happening in my last post, and they’re still coming. Tomorrow we are trialing quite a big one – Vivian’s first bed is arriving in the afternoon. Much faster than I ever really wanted. It’s a junior electric bed.

I guess this is my version of what a mom of a neurotypical child goes through when they say that their baby is growing up too fast. Or maybe it’s that darn grief that I thought I’d dealt with already. I really have worked hard to move past a lot of it, so I wasn’t expecting this to be as hard as it is.

Kicking in her cot

I thought we would have a little more time to tuck her in for naps in her cot. Or to come into her room and see that she’s playing and singing in her cot. Enjoying her little patterned cot sheets and tucking things away under it, out of sight for now. Hearing her feet kick against the sides as we get her lunch or dinner ready, or hearing her squeal in delight from behind the slatted head-board, because hiccups are just the funniest things, ever.

I thought we’d have a bit more time to see if Vivian figured out she could bear weight through her arms and learn to sit up in it. To see if she would learn to pull herself up on the sides of it. To see if she would get to stand and gnaw on the rails of it and leave her story engraved there, for other babies to find and overwrite.

I thought we had at least another year of Vivian in her cot. I guess not.

The reality we’re facing is that Vivian is getting too long for our changing table. She actually is already. And since we rent our house, a home modification isn’t really an option. So to save our backs as Vivian gets longer and more awkward to lift on and off our bed or the floor, and more awkward to get dressed on our bed and in her cot, we are trialing this bed.

Too Long for This 2

I am not sold on this bed, but a trial is a trial. Somewhere in the back of my mind I’m worried that the sides won’t stop her from falling out. I know I shouldn’t bother worrying about that right now, since it’s not a realistic risk. It’s one of those things that I wish I needed to worry about already.

If Vivian’s room was bigger, we could trial a different bed, like a giant wooden cot, with very high sides. That model is too long to get in the room and still close the door (or even get through the door).

Upside Down Smile

I know I should be thankful that I can see Vivian kick about in this new bed, and play, smile, and grow in this new bed, and I really, really am. But I know I also need to allow myself this brief moment to acknowledge the hurt and this new kind of different that will become our new normal (and how we are going to have a life time of these, if we are lucky).

I know this really is for the best. And I do want the best for Vivian and for us. It’s just so surprisingly painful. Damn it. I’m so over this surprisingly painful crap.

On the bright side – it’s purple! I hope the pictures are true to life. And now I need to find some new sheets for the Vivster, who is doing very well, all firsts considered. She is taking them all in stride. Better than we are. I’ll write more about those updates tomorrow. Tonight, I need sleep while I can get it.

IR4: When Running is More Than Just Exercise

Last weekend we signed up for this really, really awesome Facebook group, called I Run 4 Michael (IR4). It’s a group that pairs up runners and other athletes with kids and adults with physical or developmental difficulties that mean they may not be able to run. It started when the creator was talking about running, and a friend of his, who was battling bilateral hip dysplasia, said “you can run for me anytime!” A group was formed back in 2012, with 10 runners and 10 buddies with special needs. It now has over 30,000 members and over 11,000 matches.

I had originally read about it back when Vivian was first diagnosed with infantile spasms, but at the time we had far too much going on for me to commit to signing Vivian up.

Last week, I saw a post about IR4 again on The Mighty, and decided to finally sign up. I thought we might be on a waiting list for about 6 months or so, but by Friday Vivian was matched with a runner! Vivian’s runner lives 9,130 miles away from us here in New Zealand, and will be attempting to run that many miles for Vivian. She waited 6 months to be matched with Vivian, so there are way more runners wanting to be matched in the group.

It’s a pretty awesome thing knowing that someone across the world from us is running for Vivian and although it may not seem like something special, it really is. The posts in the Facebook group are so heartfelt and come from such a place of love and support. Our runner has been posting updates for Vivian on how far she’s run, and we post updates back for our runner about how Vivian’s day has gone.

I highly recommend signing your child up if you’re a parent of a special needs kid, or if you have any disability or special need yourself.

Every bit of support, whether practical or emotional, really does help in those dark moments, when you’re up worrying or trying to get your little one to sleep, or after a horrible day of battling with whatever problems you are facing. It is an awesome way to take stock of things and realize the progress Vivian has been making each day. I’m sure we will have weeks when our updates might not be as happy, but we will keep on keeping on, and our runner will be rooting for Vivian along the way. A small part of me feels guilty for not running myself, but one day I will get back into exercising!

And if you’re a runner, or someone who enjoys working out, please consider signing up! You might wait for a while to be matched but I can guarantee that it will be a rewarding wait. They also have a related group for siblings of kids with special needs (I Run 4 Siblings: The Unsung Heroes), where they can get matched with a runner, and a third group that matches runners with loved ones lost (Kerri On: I Run 4 Remembrance).

While I don’t know if Vivian will ever understand that someone is dedicating thousands of running miles for her from across the world, but I know Ben and I are so touched by it. We know that Vivian knows she is loved so much, even if she doesn’t know by how many.

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