Meds Schmeds

I called the Neuro to get the new prescription I had been watching for in the mail. I think Paula was planning on talking to the doctor before she sent it off and then it just skipped her mind because when I called she remembered what we had talked about and had indeed talked to the doctor. We had recently gone to three capsules of Zonegran the morning and three in the evening, we have a script written for 2.5 and three so we weren't in danger of running out, it was just something on the list.

I told Paula that Dylan hasn't had spasms since about a week or two after we bumped her up, so that is the magic amount for now. She said "I spoke with Dr. Thompson again and we reviewed Dylan's EEG and we are surprised she is doing so well!" After a good pause I said "At all? Or just right now?" I wasn't sure what she meant!! She started laughing and said "So well on Zonegran! I am not surprised she is doing so well in general!" It was pretty funny.

They are surprised that the spasms haven't already developed into drop seizures because that would be a very typical progression from Infantile Spasms. BOO! It's good that it hasn't happened yet though for sure as I specifically inquired whether that was around puberty (which is a VERY scary time for children with seizures as they tend to develop all sorts of complications then) or earlier and she said definitely earlier, usually by now. But, of course, Dylan didn't have your typical infantile spasms either! So you never know. I commented that it's just a big guessing game!

I told her the spasms don't bother me if they don't effect Dylan which, of they are mild, they don't seem to. Apparently there isn't actual damage being done when she has them so that's good. They just become a problem when they are stronger and they wipe her out. When we start seeing them they are very mild and hard to pick up on, but they tend to get stronger until we change the med.

So we have a plan in place for when the spasms become a challenge again. She is at the maximum amount of Zonegran that they would want to give her at her size so we will switch to a medication called Depokote. She said the problem with Depokote is that you risk other complications (liver and white blood cel count I think?) and we will have to do regular labs to watch things. Boo to regular labs but it has helped that she is an easier poke than she has been. Shoot, last time we went to Endo we did a draw right in the office for the first time ever.

Paula told me to watch for drop seizures, where Dylan would fall forward, and to let her know of the spasms become a problem again. Again, drop seizures, boo.

Meanwhile, I think we are within 10 days of no more POKES! We are just waiting for her meds to run out. Yay!

Asher walks. Like full on walks across the room, changes directions, walks. It was all over the course of three days from the first unassisted steps to full on wobbly walking. I even took him to the splash pad with the boys and had him doing the walking around into the water. He was pretty cute he would touch the fountain and then scream in torture when he was splashed. Over and over again. He finally decided the fountains were fun until the big spray sprinkler came on and then he would scream and couldn't get away fast enough.

Duncan is really big on telling us how much he loves us. "Mom, do you know how much I love you?" and when we say "how much?" he said "Eighty sixty onedy fivedy." and we say " wow! that is a lot!

If you ask him how many brothers and sisters he wants he says "eighty onedy six" Specifically, eighty one boys and sixty one girls. He gets very excited at the thought of all of those brothers and sisters! That might be a few too many kids though, even for us!

And, just in case you are wondering, no we haven't moved Duncan's room yet. Haha!

Matthew did order a play set for the back yard though. A big old honking play set. No messing around, this thing is huge. Jessica bought one for Tildy's second birthday and I knew that she probably spent quite a bit of time researching options. So basically the hard work was done. Yea, I totally did that, I totally cheated. It took Matthew a little while to wrap his brain around where it was going and how we were going to do it but he did it, it was ordered and we will be seeing it in a week or so. Then is the fun of putting it together!

Jessica and Steve wired Tildy's to put a light in the house (cute) and I told Matthew we should rig ours with a mister. It's already pretty hot outside, maybe? So funny. The boys are really good about playing on the little metal swing set we picked up from somewhere so I am sure they will have a ton of fun on a the real deal.

Ian has kind of turned into a little terrible two year old in the last week or so. Throwing his body around in big fat fits. Running from you, even hiding. He's gotten kind of naughty with his little independence! He must do things himself, I put his milk in the shelf and he threw a fit, went to the fridge, took out his milk, then put it right back in same spot! Gannon said he put him on the trampoline at Ami's and he climbed down the ladder to climb back up again and do it himself! Yikes!

Mama got a new stroller. Matthew didn't think all four kids would fit on it and I knew they would! When I set him the picture he called it the clown car of strollers! Pretty sure we exceed the weight limits though.
At some point Duncan will walk right?

The stroller was the second time we went to the splash pad this week, this is the first.
I was a bit unprepared.

I didn't know that we were going to get wet but we rolled with the punches.

Super fun. And no pictures of the second time because I was walking around getting soaked with Asher. 

Asher crawled through this diaper box several times. Kept him busy for a while!

Big box fun

I got this BMI chart the last time we went to Dr. Endo and kept forgetting to take a picture. I was cleanign out my paper basket getting rid of things so I made it happen.
I think it is so funny because her BMI is all over the place!

Uncle Kiko watching a show with the littles before bed time.

This is the very first picture Duncan has drawn EVER. Normally he just scribbles. I was in shock.
Look how great this train is!! WOW!