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.