...

I'm just going to say this.

We have no idea who our neurologist is. Our ped got a hold of whom we thought was our neurologist only to be told that no, she in fact wasn't. Talk about a complicated situation that is really starting to make me lose hope in the place that is supposed to be an amazing hospital. I have yet to have a really good experience there. Now our Ped is on the war path for any kind of answer as to who the hell is taking our case and why the hell it's taking anyone so long to get their act together.

On top of all that, Dinky needs a G-Tube. He's not gaining weight and when he gets sick he loses weight so quickly it's kind of scary and unsettling. Not to mention that he is probably aspirating feeds quite often which explains why he's constantly on antibiotics... So Ped called this morning and told me that on top of finding out that we have no actual neurologist, he talked to one of the surgeons down at BCCH who said to write a referral letter and he will try and get Dinky in as soon as he can.

So I texted our IDP, who called me and chatted for a bit and she called our PHN to talk (who's out of office until Monday) and then she called our Ped to find out if there's anything she can do on her end. We really are blessed with such a great team that is working together to try and get Dinky the best care possible. I'm not sure where I would be if I didn't have them. Or really, my whole support  network that we have set up.

So. Dinky gets a G-Tube. Which means that we're going to be getting onto the At Home Program (AHP) which will help buffer the cost of everything. Ugh. I feel sick. So much going on all at once that it's just like my brain is ....

Mush.

Bits of this and that and everything in between.

I've become frighteningly lax in regards to this blasted blog. Sometimes I find myself wanting to close it so I don't have to do anything with it...and I somehow manage to talk myself out of it. I enjoy blogging, I really do. I just don't seem to really have the time to sit down and write out a post as often as I would like, which makes me sound lazy. And I really am. Writing a blog post isn't always the easiest of jobs, you know?

Tink is at the farm this weekend. Mum picked her up yesterday and shall drop her off tomorrow some time before she takes R2D2 to the rehearsal for his piano recital on Tuesday. I'm so excited to go watch him play. I love listening to him tinkering away on those ivory keys, but I do know that he's looking forward to summer break from not only school but piano as well.

It's nice just having him around (well, and Dinky obviously), we're able to actually spend some good time together. Last night we went out to a wedding reception for one of Husby's co-workers and it was a lot of fun. They had carnival games set up and cotton candy. R2D2 was in his prime, running around and winning tickets to bring up and collet prizes. I don't think he needs any new toys. Ever. In fact I'm pretty sure I could keep some of that stuff and gift it for Christmas! I just don't think I could get away with doing that to him. He's crafty and clever that one. I love him. He's such a treat. This morning he asked if he could play his tablet (yes, we broke down and let him get one) and I said sure...after he helps clean up. So now he's downstairs in his room playing for a bit after he helped clean up by picking up all the stuff off of the floors.

Dinky is feeling under the weather. Yesterday he wasn't feeling the greatest and this morning he's so tired, slight temperature, not hungry and was caked in boogies. And being sick tends to mean some time in the hospital and an increase in his seizure activity. Which I have noticed already this morning. I'm pretty sure that there needs to be a tweak in his medication as I've been noticing a few little twitches once or twice a day for the last couple of days and more than one or two today. Which means that something isn't working the way that it should be...and that he's getting sick. An increase in seizure activity is going to be the normal for us every time Dinky falls ill.

Just like how easy it is for him to get sick.

Which drives me mental because he doesn't have his vaccinations yet. Every time we try and get them done something happens. He gets sick or he seizes and winds up in the hospital. So not only is there Whooping Cough running rampant in our area because parents are (in my own opinion) freaking dolts (most of the time) and refuse to vaccinate, thus letting these diseases back into the herd...so not only is there that but there's freaking bacterial pneumonia as well. JUST what we need!


Husby fenced in our small little garden patch and we planted it about 2 weeks ago. Nothing overly complex. Potatoes, peas, beans, carrots, beets and spinach....as well as a small pot of chives. I'm pleased to announce that we have veggies growing! Almost everything is up to some varying degree or another, except the carrots. While we only have a few beans that have popped out of the soil, the peas have taken off. Which makes me wonder if I should have only planted 2 peas per hole rather than 3. Either way we like peas so that's a bonus. Also my little hanging tomato plant has green fruit already! I'm excited. I think I might enjoy gardening.

At least until the weeds get out of control. In the mornings I try to go out for a few minutes and pull what I can and revisit the patch in the evening. I do know that I shall be rethinking the strategy a little bit and trying to plan things a bit better next year, but this really is the first year I've had a real garden. At the old house we had a small patch but nothing to this degree (which in itself isn't all that large but a good size for being right in town!) so I've got all kinds of weird giddy going on. I hope to be able to make this as successful as possible, and if I can, learn about the right kind of veggies to plant that can be frozen (like what kind of peas I can shell and freeze!!)

I really do need a hobby.

OH! Before I forget, Dinky got his weight checked the other day and he is now 7.18kg!

Though being sick and not eating it better not go down...

This makes me all kinds of excited.

Okay. I should go find something productive to do. Because sitting on my butt isn't getting the floors cleaned. And they really, really need it because they're gross. I really should try getting them washed a little more often...

Mail, snails and puppy dog tails.

It's been about 2 weeks since I've last updated. Nothing of note has really happened which is a blessing. Dinky is slowly gaining the weight back that he lost. 10 ounces doesn't seem like a lot of weight to most "normal" people but for him it was a huge, huge problem. There was talk about needing an NG if he couldn't gain the weight back orally and if that was the case, a G-Tube would have been in the works as an NG is really only for temporary terms according to our Ped. That and Dinky hates them like there's no tomorrow and the last time he had one in he kept ripping them out.

So I'm glad to say that he's just under what he was previously.

April 24th, he was 6.91kg.
April 29th, he was 6.64kg.
April 30th, he was 6.65kg.
May 1st, he was 6.74kg.
May 4th, he was 6.77kg.
May 9th, he was 6.88.

So our Ped is happy and as long as the gain keeps steady a feeding tube isn't in our future!

Now, let me tell you about this really special piece of mail that Dinky received from an amazing young woman on the Island. Her name is Angel and she has a non-profit business called Hugginz by Angel. What she does is she makes blankets for children that are ill or "special needs". She spends time picking out individual fabrics for each blanket, sews them up and spends a few moments hugging the blanket and infusing it with her love.

A few months back I sent in a request for Dinky not knowing if he met her requirements or not and on the request form it asks you for specific interests/colours, so I filled it out with: dragons, pirates (his bedroom has these brilliant painted pictures from an equally brilliant mum friend of mine), and whales/ocean life.

One of my friends on Facebook tagged me in one of Angel's pictures asking me if this blanket was for my Dinky. And it was! It truly, for real, was for him. I was so shocked and in awe that she took the time to make a blanket for him. Not only did she make a blanket that is just perfect for him, but she took the time to fill it with her love and a piece of her heart. When we received the blanket, the first thing I did was wrap him in it and he cuddled down and went to sleep. Included in the box was a Curious George movie, a small travel pillow she had made and a zebra plushie.

Even just writing about it I can feel all kinds of emotions happening and I'm just so overwhelmed at the love people have for one another. So we use his Hugginz blanket every night. Actually, scratch that. We use it all the freaking time. I love it so much that it gets packed around all over the place when we leave the house.

Summer time is a measly few weeks away. Hard to believe that we're already almost into the middle of May. I need to start hounding my Neurologist in regards to when our appointment is in June as we've got our reservations on the Island booked. So many road trips in our future. Terrace some time next month and Vancouver at the end of June...and again in July for an eye appointment and Bio Chemical. So the first time down to Vancouver we're dropping R2D2 off on the Island with my gramma. The second trip down we will figure out a way to get him so that we can bring him home with us. So many road trips I'm starting to plan what we're bringing with us now.

Tink had her assessment done with the Speech Therapist and she said that Tink's perfectly fine. She has 103 words according to the little booklet thing I had to fill out. And that's just what I can actually understand. There are so many garbled could be words I've got no clue what she's trying to say.

But I DO know when she's sassing me. She places her hands on her hips and gets a total teenager look on her face and just rambles. And rambles. And rambles, often leading to her getting mad at me. They say what your toddler is like at 2/3 is what they're going to be like when they're 16.

I'm just going to point out right now, we're screwed..

I've managed to convince Husby I want a small lap dog. So come the end of July I shall start looking around to see what's out there locally/shelters. Our pup is 9 and it's high time we got another dog so that they can see what our family dog is like, thus turning into another one of Remi. I can only hope. Remi is just wonderful. I love that shedding, nasty, constantly needing to be brushed because he's blowing out his coat and it's disgusting as he looks like a poorly sheared lamb with patches of longer thicker fur and sleek summer coat...

The birds and the squirrel love it through! Fur doesn't last long in our yard! By the time he's done shedding he will need to grow in his winter coat, or at least that's what it seems like.

Dinky has cut 5 teeth and is working on his 6th. He had 2 when we went to the hospital on the 24th. I received some Punkin Butt teething oil. I LOVE the stuff!

"Yuck. UGH. Monny, lookit this. YUCK."

...that's my cue to end this now. Who knows what kind of trouble Tink is getting herself into...