Goodnight Eva

Life just isn’t fair.

I haven’t been following this blog for terribly long, but in the short time I’ve been following Eva’s story, she has truly captured my heart.

I don’t have the words to express how deeply sorry and saddened I am and how I wish I could wrap Eva’s Mum up in love.

I am so sorry about your Peanut. She touched so many hearts.

What a difference a day makes.

Yesterday I was excited about Eva’s new high chair and today there is no Eva to sit in it.

Last night at around 9pm Eva woke crying. Both I and my amazing and brave housemate Ess went into comfort her. Ess passed her to me and we could tell something wasn’t right. Eva was taking great gasping breaths. Then suddenly she stopped.

She started to turn purple around the lips and it was at that point that Ess took over, putting Eva back down and starting chest compressions. We kept going until the ambulance and fire trucks arrived and then they took over. By 9.30pm they gave up and let my little girl relax.

A simple cold one day, and gone the next.

I don’t have clever metaphors today. I don’t have creative flow or inspired words. I have all encompassing grief that abates…

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Keep Reaching!

Another week (and a bit) done and dusted!

Last week, Vivian’s reflux was acting up a bit, which means we’ve been revisiting intake land, and have had to up her Gaviscon doses accordingly. She’s been struggling a bit to pass everything with needing this much Gaviscon, so when we go to see the pediatrician at hospital again, we will be asking about alternatives to Lactulose, which apparently is very dehydrating.

Monday we went to the Champion Centre and Vivian only stayed for a half session. She woke up at an awkward time, and was due back to bed when we needed to be there, so she got pretty tired about half way through and had had enough!

Throughout the week Ben has been working with Vivian on her rolling and sitting. So far she rolls to her right much easier than her left, while on her tummy. She doesn’t like putting weight on her right arm to push over to the left, so that’s what we’re to focus on now. That and weight-bearing through her elbows, and getting her wrists to turn in towards her face (think of a baby doing little bicep curls).

Her ACC physical therapist was really pleasantly surprised about how well she is picking things up, like touching her toes. While she doesn’t do it unassisted on the floor yet, she does try at least and got her toes a few times while we have been relaxing on the bed. After Vivian warmed up with the PT, she attempted a few quick toe grabs while we were talking above her, which is great.

Vivian Toe Touch

 

Vivian’s little personality is starting to really show during these therapy sessions. The therapist can try to get Vivian to look turn to one side and Vivian will instead keep her head straight and turn her eyes. Cheeky! She is a sucker for a really sensitive snail toy that a lovely Mum sent us from up north; she found the toy too noisy, but it’s awesome for Vivian because it provides instant feedback when Vivian makes a move. Eventually the snail gets the better of her and she will turn for it.

After her PT session, Vivian had a quick play and then we zoomed off to get her fitted for her very first pair of glasses. Unfortunately they only come in two colors (guess which ones) but they should be pretty darn cute. Vivian’s really not going to love them touching her face unfortunately, so we will need to work with her to desensitize her to having them on. If all goes well we might be able to pick them up this Friday after Vivian’s hearing aid appointment.

This is Vivian’s latest sound discovery:

What I was actually trying to record #babyyodeling #hopeforvivian

A post shared by Gwen (@gwenami) on

This week we have Vivian’s pediatrician appointment coming up so keep your fingers crossed that she’s put on a decent amount of weight, please :)

Hope you have a wonderful week!

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.

We’re on a Roll!

Happy belated Valentine’s Day!

VivianValentinesDay

Look at those eyelashes.

It’s been a really busy two weeks.

We have started sessions back at the Champion Centre, and our ACC PT has still been coming over. This extra time with a PT has been awesome for Vivian. She has started rolling from front to back with little to no assistance!

 

We are so excited by her progress. It’s really amazing for us to see. The night after we realized she was ready to start rolling, Ben had popped her on her front in her cot for some tummy time and then when he went back in a few minutes later, she was on her back. I didn’t believe him at the time, so we tried to get her to do it again, but she refused. Typical Vivian!

She will also help you if you start to roll her from back to front, so much so that now she can slowly roll the entire length of her yoga mat (with help), without becoming scared.  Very exciting for us!

We are still working on Vivian’s rolling, putting weight on her arms and knees, and sitting up, along with her grasp. Our ACC PT is ordering Vivian a special piece of equipment to help her with all of these things. It’s a Squiggles Early Activity System, from Leckey. It looks pretty awesome, so I hope it doesn’t take forever to arrive.

We had Vivian’s ophthalmologist appointment on Wednesday to test her eyesight. They ended up needing to put some drops in her eyes to dilate her pupils, which she wasn’t extremely happy about, but it was worth the extra information that the doctor was able to get.

He thinks Vivian has close to normal sight and said that she is long-sighted at the moment. And she has one eye that is slightly crossed at times, due to her brain possibly having to switch between one eye and the other constantly. He also didn’t think she had any degree of cortical vision impairment at this stage, due to her intermittent tracking and focusing on objects. We have a prescription for her first pair of glasses and we are now waiting for the optometrist near us to order in some frames to fit her tiny head.

The ophthalmologist said that we might see a big change in the way Vivian interacts with toys and us once she has her glasses on. We are really very hopeful about this. I am afraid of being too hopeful.

Vivian was also fitted for more hearing aid ear molds on Friday (very busy week!) and so we will pick these up next week. We decided to step outside our color comfort zone and go for a bright green color (ooooh, styley)! Hopefully it doesn’t look like she has stuff growing out of her ears, lol. I’m afraid of getting red ones because I don’t want people to think her ears are bleeding. Weird thing to worry about, I know.

More smiles from Vivian:

New Therapy Team

Since our ACC claim was accepted, we now have another team of specialists to work with Vivian.

So in addition to the Champion Centre team, we now have another group of folks from Astech Assistive Therapy. We haven’t yet met with the Speech & Language Therapist yet, who will help with Vivian’s feeding, but the PT/OT person has come by twice so far.  The Champion Centre has been on break since right before Christmas, so it’s nice to get some therapy in while waiting to get back to our weekly appointments there.

Vivian really likes this new therapist, but I think most of all she likes being at home where she is comfortable. It makes me wonder if we should’ve chosen a home based service for her early intervention provider. But we do love the Champion Centre team a lot, and we are happy going each week now that we know what works for Vivian in the car.

I haven’t been home when these new sessions have taken place, since they’ve been on days when I work, but Ben gave me a full run down and the therapist sounds pretty awesome. She almost got Vivian to roll completely over from back to tummy the week before last (when I made the Facebook update about it). Very exciting! She is confident that Vivian will be able to roll both ways eventually, and was quick to point out that it’s not Vivian’s body stopping her from rolling. Vivian isn’t rolling yet because she doesn’t want to roll yet. She will roll from side to side and hang out there, but if you start to roll her over completely, she will stop you if she doesn’t feel like being rolled over.

Ben says that Vivian also was tracking objects visually really well for a brief period during the sessions, which is what made her almost roll over. It’s super puzzling because other times she really doesn’t register anything at all from what we can tell. It’s almost maybe a matter of her not being distracted by anything else? We still have so many  unknowns there.

The therapist also showed Ben a new exercise for Vivian’s wrists, to keep them from getting stiff from not being used, and is ordering us a piece of equipment to help Vivian learn to sit up while being supported in her core a bit better, as she is jut not strong enough to use the Bumbo seat we have for her.

Vivi First Pram Walk

Other updates:

On the feeding front, it’s still an uphill battle. She will not eat for me in my arms, and might take about 20ml for Ben in his arms. She will wait till she’s swaddled and in the hammock before eating. And her intake has been down this week, so of course I am worrying about that.

She had an OK week overall, but has been pretty unsettled today and I don’t think she is feeling at all well. Lots of naps and fussing, although today her eating was better today than any other days this week.

We are giving her lactulose daily again after she started struggling a bit with her poo. Poop to that! She is taking most of her medications a lot easier than she used to though, so at least we have that going for us.

Next week we are back to being busy with appointments and therapy sessions. I’ve started using Google Calendar for all of our appointments so Ben and I can know at a glance what is coming up and what days are free for new appointments. Crazy busy, baby!

What’s new in your world this week?

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