I just finished reading my last blog post. Hard to remember what was said and what wasn't when it's been a fair bit of time since I've written anything. Currently the house is free from the sick bugs. Small, tiny creatures I hope don't visit again any time soon. It doesn't help that R2D2 is in school which seems to be a petri dish for breeding germs and all things associated with those terrible little beasts. Fingers crossed they don't come back. Is there some plant or trap I can hang up in my windows and doors to ward off the vile little germs?! If not, there should be. Catch the sicknesses in a small web like spiders. Someone needs to come up with something. I would buy it.
Dinky is now just over 15lbs! An exciting yet small milestone for us there! But more on him in a little bit.
Easter was a very fun time for the big kids! Started off with their little goodie hunt. R2D2 got a Creeper ... toy ... thing which made him very happy, Tink got a tea set (finally, we've only been talking about it for ages!) and Dinky got a few small things like a new Lulujo, a Lamaze toy and a new bib. And than, SURPRISE! New bikes for the big kids! R2D2 was due for a new one. The one he was using previously made his knees go up to his ears -- okay not quite but close! Tink got a Stride Bike that she's not quite sure what to do with it yet, but she's smart and will figure it out sooner or later. I'm baking on the sooner.
My parents came over for a turkey dinner and brought the kids a few gifts of their own. R2D2 has become extremely fascinated with graphic novels and one day during an outing to the thrift store we found the first book to a series so mum grabbed him the second one. I'm not going to complain! He loves them. Graphic novels and Where's Waldo type books. Whatever captures his interest reading wise is fine with me!
Tinks vocabulary expands almost daily. Both fun and frightening as I'm pretty sure she was trying to cuss the other day while in the basement with her dad who was cussing over a project that didn't go the way he had planned it. Than again, nothing ever really goes as planned. Ever. Because why should something follow plans when it decides to make its own?! Plans make things simple and easy. Can't have that now can we? Why would we ever want that?
Last Saturday (Match 28th) things were finalized with our Pedi for getting us back down to BCCH. He finally got a hold of our neurologist who agreed that the medication Dinky was on just wasn't working the way it should. So she wanted another EEG done to see what, if anything, had changed and in order for that to happen we needed to be admitted into our local hospital for transfer to be admitted into BCCH. Sunday we were transported down and went through a whole bunch of repeat questions about pregnancy, delivery...blah blah blah. Let me tell you, repeating everything gets extremely tedious.
At 28 weeks was diagnosed with Polyhydramnios. Ultrasounds weekly after 30 weeks as well as NST and weekly doctors appointments. As far as they could tell there was no cause for the extra fluid. Birth was induced after a bedside ultrasound on the 24th at 6am to determine how he was positioned as he had just been Frank breech the week before but head down during C-section referral. Broke water at 8am with the help of another doctor, Pitocin started at 8:30am and had him at 6:10pm. Born with fluid in his right lung and his left was sticky. Pediatrician came in and assessed, did a chest x-ray. Feeding problems due to him being sleepy. Low blood sugars for the first 2 or 3 days. Nursed and then gave formula to up his sugar levels. Feeding fine after the first 2 weeks. Have noticed almost right from birth his hypotonic state, assessed by neuro, started genetics blood work in November and referral for MRI. First seizure activity started December 31, a few every couple of days. First cluster January 10. January 11 another cluster for approximately 45 minutes, went to ER started Clobazam. Follow up with Ped on the 13th. Got a call on the 14th that Neuro wanted us admitted for possible infantile spasms. EER, MRI and lumbars the following week. Showed myoclonic epilepsy/seizure disorder. First generalized seizure February 1st for 8 minutes. Second was the 13th for 20...
It makes my head spin. I'm sure I repeated all that information about a dozen times to a dozen different people. His repeat EEG didn't really show much at all. Of course he didn't have any of his jerking seizure episodes during it. One or two very small local ones. One in his shoulder and one in his leg. That was it. Everything happened AFTER they disconnected him from the head things.
Saw the cranial surgeon as well. So far Dinky doesn't need to have surgery to fix his bean but if his head doesn't keep growing it will be revisited and reassessed. New medication added into the mix and one was taken away. As well as a weaning schedule for his Clobazam. I'm not going to get overly excited over this new medication until it's been in his system for a month. All of the other ones have gone and proven themselves ineffective after the first two weeks. But I have noticed a difference in him.
He's still having the occasional twitching/seizure but not nearly as many as he had been having. His eye contact has improved tremendously as he is more willing to hold your gaze for minutes at a time. He's also a little more active. Down side is I have noticed a small decrease in his appetite so I do need to watch that. Cannot have him not eating.
I am excited for the time at home. I'm excited to be back at home. I'm excited for what PT is going to start doing with him as I would LOVE to have him have more head control by his birthday. That's going to be my goal to work on with him. July is still many months away so I don't see why it won't happen! But, things happen the way they happen for a reason. July = more head control. July = first birthdays, more specialist appointments and who knows what else.
Hopefully a garden as well! Husby has been so busy with so many other projects around the house. Our pantry/laundry room is being revamped. Last night before work he put up the first coat of paint so the next coat will be done in a few days and hopefully shelves will be going up this week. As it stands, everything is in Dinky's room. Not that he's using it or anything.
Time to start looking into movement monitors that alert with abnormal movements. I shall be bringing it up with my IDP when I see her an PT on Wednesday. I would love for Dinky to be in his room by his birthday but I just don't feel comfortable with the thought just yet. A movement monitor would probably help me immensely in making that transition.
So. Fingers crossed!
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