Day 10 and Freedom!

After 10 very long days here at Childrens and a long 11 days total from being away from home and we finally get our discharge papers. It's been a long time coming. Well, not a long time coming per say but...it has been an interesting time away.

I miss my big kids. I cannot wait to hear all about the wonderful things and adventures they have had. We've picked them up a little present while we have been down here. Just something to let them know we've missed them. Because we have so that's not to bad. Going home means we can eat real food again. I can cook again. And bake. And just....be home. Get everyone back into their own routines, but being here, I hope will help Dinky learn to sleep through the noises of the house.

It's been just over 72 hours since he's had an episode. Success in our books! So now we have a schedule that we need to follow in regards to increasing one of his meds and decreasing another.

He's had a small battery of tests and blood work. It will be a couple of months before we know what it is exactly that he has. But having a diagnostic label won't change anything other then the help we cam get for him. I'm sure there will be a few frightening moments where we will feel helpless and hopeless, but those moments will pass.

Because regardless of what it is, Dinky is loved so very much by everyone and he knows it!!

Good news is our new neurologist also deals with genetics AND she has clinics in Terrace which is SO much closer to us! We do need to be back down here for July for followup appointments with the eye doctor here and the visual impairment specialist, but fingers crossed we can see Neuro closer to home in 6/8 weeks for a followup. I don't want to have to come back so soon.

All I can say is I am SO thankful that I am so in tune with him. We could have ignored the twitching and shudders. On his discharge sheet it gave us a small diagnosis of myolonic epilepsy. I'm going to be googling when I have more of a chance to check things out.

But for now, Dinky is doing really well. And that's all that matters. Whatever the future holds...

We will do this as a family. Through thick and thin.

Have I mentioned that my husby is SO wonderful? He's been a great pillar of support. And my parents. And his. I don't know what we would do without them.

Day 6

Things at home seem to be well in hand. I'm not sure what we would do without the support from both sets of parents. I miss my bigs so much and it sucks being stuck here for who knows how much longer. And to add insult to injury, R2D2s birthday is tomorrow.

So much for being home for it. But regardless, I know he will have a wonderful day and perhaps we will be home in time for the party on Saturday! And if not then maybe Monday. I'm being hopeful.

So what has happened since our last update. Not much over the weekend. Some blood work. We got 2 passes so we were able to get out of hospital for a few hours. Visited with a couple friends here and there as well as The Grammas. Not every family can boast about having 5 generations. So that means we have to be extra awesome because our kids have 2 GGGrammas. How cool is that?!

We have had dosage increased 3 times now. Today has been a better day. MRI was on Monday. That sucked. Fasting was really hard on him. Blood work was late so because of that he didn't get a full hours feed before they cut him off totally at 8am. Of course he wouldn't take water. So that was pretty rough. We were told the LP would happen while he was still sedated as it would be way easier while he was sleeping.

That didn't happen. Of course it would happen the next day. They would do it on Tuesday. So more fasting needed. And more blood work.

So comes Tuesday. With blood work that didn't work out so well and resulted in a heel prick. Dinky doesn't like giving up his blood. I swear the moment he knows he needs to provide blood he tells his veins to run and hide!!

The visual impairment doctor came and did a quick assessment and he seemed pretty okay with how Dinky was doing. Not sure what he has written in his notes. Will need to get a copy of everything for our own record.

So his LP didn't go as they planned. Because they didn't listen when we said sedation would be better. No. They had to do it unsedated. Of course it didn't work. So now we get to repeat the thing again tomorrow.

Which means more fasting for him. As well as sedation. It better freaking work tomorrow. I'm not sure if we can go through another failed LP.

MRI results should be given some time today. I'm nervous and anxious about it. Still in the ward room. No ones even tried moving us to a semi private or private room. And because we aren't in a semi or private room, we don't qualify for the Sunshine Bundle which includes extra perks like coffee/tea voucher, gift shop voucher, cable, parking pass... And can't get into that until we get moved. Can't get moved because it's busy. Ugh.

I can't wait for release. It will be so nice to be able to see my family. And my house. And to cook. I miss cooking. I miss cooking so much. I didn't think I would miss it but boy do I ever.

Also, Husby has been freaking amazing for the whole time we have been down here. I feel bad for him. He's been cooped up most of his days here in the hospital with us. So I've been trying to get him outside and doing things. Poor man. The exciting parts of our days generally involve watching the construction out the window.

Well, if this doesn't give us answers I don't know what will.

It seems that some form of electronic devil ate my post. So I shall have to start again only this time a little shorter. Since we saw the Ped on Tuesday, he called Neuro and then called me.

He said they both agree that MRI and EEG need to be done to see why he's got infantile spasms, as that's what they thought it was. So they wanted us down there for....Thursday. I got the call Wednesday. Somehow by the grace of all things good I managed to get Husby a flight using his Aeroplan points as the best way for me and Dinky to get down would be for an interhospital transfer. So we were admitted into our local hospital Wednesday, late afternoon and transferred Thursday morning.

First ambulance ride for either of us! Dinky got a new bear which was really nice of them. First flight for him and first flight for me in something that small. We got picked up by another ambulance and brought to BCCH. Were admitted and set up in a bed. Obviously we got here before Husby. Who managed to show up in the nick of time just as we were getting ready to head down.

EEG was fairly uneventful as he decided to not have any spasms. And then he did. Hooray!! Glad he had them so they could record them to see what was going on. But where does that leave us? We waited a few hours for someone to tell us what's going on.

EEG showed signs of epileptic activity, but not every twitch is a seizure but they don't know which is what. His seizures are Myoclonic which is an uncommon seizure for infants to have so it gives them a good solid foundation to start looking in. Change in meds happened last night... MRI will be happening some time in the next couple days as well as a probable lumbar puncture. BCCH ophtomology will be looking at him, blood work and urine work will be sent to biochemical to see if it's metabolic.

So, just heard from MRI, will happen sometime Monday. Fingers crossed we can skip this joint Tuesday..

Because we would really like to be home for Wednesday as my bestie is coming out and R2D2s birthday is on Thursday..

Would be nice if they provided some meals here for me but food is for patients only. Parents are screwed. Not exactly nice... Even if they provided coffee. Or something. This is so expensive.

Not fair. Not fair at all. Husby is going to miss a bunch of work unless he leaves us here and goes back. Which he won't do..

Thought I suppose it is what it is.

And that's that.

It has been a long while.

Well, we survived Christmas. All three of them. I love the holidays. I love being with family, surrounded by good food, good company and good memories. I don't, however, enjoy all the chaotic mess that comes with it. But we survived. We were all spoiled. And we all had the best times.

Just a short update. I'm tired, I have a headache and Tink isn't helping matters at all by being her wonderful, charming loudasheckspazzingpants.

Dinky is now a giant 13lbs2oz! It's fantastic!! He's got the biggest cheeks on him!! His eye appointment went well, his eyes are good for now and another check in March.

However, he's having for lack of a better term, mini seizures. At first they started as just random twitching of his hands and legs. They would stop for a few days and then happen a few times again. And then the other night they happened a lot. I managed to get a video where he had his eyes rolling back. Next morning he was having a lot of these "tweaking" fits. So we took him to emerg.

The oncall doctor was able to get a hold of our pedi and explain the situation and what was happening. So we got a prescription. That doesn't come in liquid. Go figure. We were able to get a dose of the anti-seizure meds at the hospital, crushed up in some apple juice.

Dinky liked the juice!

And this morning he has only had 4 minor twitchings. Improvement I hope. So we meet with our pedi tomorrow for a check over and to see what's going on, if we can get and of our Children's stuff rushed now that there's been this new development. I might sound like a jerk, but I hope we are able to get in sooner rather then later.

It would be nice to know what's going on. And what we can do to help. This being in limbo really, really, really sucks ass and has a way of making a person feel extremely helpless. Not exactly the best feeling to have.

R2D2s birthday is in 10 days. His due date was for today but he made me wait another 10 days before he was forcefully evicted from his comfy womb. My little boy is turning into a wonderful young man.

And it sucks.

Why do children have to grow up so fast? What's the rush?