Tuesday, January 18, 2011

An EEG in pictures

For those who have never been though a 24 hour EEG with a young child, it's impossible to even properly describe. Picture your worst nightmare, make it last 24 hours (or one week like our last EEG) and throw in a very cranky toddler.

The only things that have been more stressful are the seizures themselves and the lack of anything working to treat them.

I didn't take any pictures of hooking him up because it took both me and Jonathan holding him down to get it done. It sucks. I HATE the process almost as much as I hate seizures. When we do the 20 min one in the doctors office it is less stressful. The tech's over there are much calmer and more experienced plus they don't have to cement them to his head. The whole process just sucks and according to the tech's it will until he 4 or 5. God help us.

The only up-side of this EEG, and the reason I was able to take pictures, is because we actually got sent home with the monitor on! YAY! We got to be at home, out in the world, and most importantly, out of a tiny hospital room tethered to the wall.

When we left the hospital we headed to the mall because it was cold and wet outside. We rode the carousel a few times, and the train that runs in the mall. Jack LOVES the carousel, has a frequent rider card, and has been known to cry when we make him get off. He had a good time walking around and it wasn't to obvious that anything was going on. Either that or people were too scared to say anything.

When he was ready for a nap we headed to the car. The doctor actually wanted us to let him nap in the car so that we could get a seizure on the EEG. The problem was that the car wouldn't start. Long story short, the battery was dead and my mom's boyfriend, Ron, came and rescued me and Jack while Jonathan dealt with Sears and the battery. I suppose it would have been worse had Jack and I been on our own and I had no food for him, EEK! But it was sucky timing. I dropped Ron back off at his house and drove Jack around in his car. He had 1 seizure for sure and another episode that I suspect was a seizure.

That evening my mom came over to hang out with the little man. She also brought us dinner and wine! And our friend Rita came over too.

This is what his head looks like all bandaged up. The EEG leads are glued (AKA cemented) to his head and then wrapped. He pulled at it for a little while but eventually left it alone.

Then he had to wear the backpack, which he did really well. He has an ace bandage on his head here because at 3 AM we had to wake him up to re-wrap his head because everything but the leads came off. He didn't go back down until 5:30. Just add EEG tech to my list of mom duties. That's one that they didn't teach me in college.

I love this hat! And it was the best thing to put over everything they tape to his head. Dr. Kane ran into us one of the times we were at the hospital and he really liked it too :-)

And this is the way we all felt about the whole thing.

He did get bundled up to go on a car ride. And this hat and gloves set just cracks me up.

That night I had a pallet on the floor of his room. I "slept" with my glasses on and the monitor right in front of me so that every time he moved I could check and make sure he wasn't tangled, or pulling on his head, or having a seizure. I got maybe 3 hours of very interrupted sleep. Thankfully Jonathan took over early in the morning and let me sleep another 1.5 hours.

And he did a lot more car riding around the house too. You can kind of see the leads that are glued to his head in this picture.

24 hours later it was back to the hospital to get un-hooked. It's much easier and quicker than the hooking up process. Part of what sucks is waiting for 45 min each time, even though we're there on time. And as soon as he saw the tech again, he turned the other way and tried to get away. Thankfully he didn't fuss when we picked him up and took him, but I was concerned at his reaction.

We got back to the room and the tech took the box out and said, "I've never seen this code before on the screen. I'm not sure if it recorded." I stopped breathing. I was going to have a breakdown if it didn't record. She called another tech and found out that one of the batteries came lose, but that's why they put in 2 new batteries when they hook them up. Thankfully it did record and everything was fine. But Oh My God, don't do that to us.

This is what his head looks like under all of the bandages. I think there are 27 leads. Each one has to be measured, marked, and the cemented to his head so you can see why it takes a while. Then they all have to be tested to make sure they work.

The they just bathe his head is acatone mixed with baby oil and give him a scalp massage to get them off. And after he gave the tech a big hug, said thank you, and blew her kisses. He is the sweetest child ever.

As for the results, we won't know anything until Thursday when we see the neurologist. I know that he had 1 seizure. He also had what I've been wondering about while he slept in his crib, so I'm really glad that they'll be able to tell me if it is a seizure. He did not have one of the new seizures that he's been having and I'm just now beginning to wonder if he's having yet another kind a seizure. So he's now had infantile spasms, partial seizures, what I think are tonic seizures (or maybe tonic clonic, I'm not sure which) and now possibly complex partial seizures and/or myoclonic drops. That is far too many seizures for a child who's not even 2.

I'm not sure what's going to happen at the appointment. I suspect we may be sent to Houston for a scan thus sending us back down the surgery road. But I also think that his meds need to be reduced and maybe the diet tweaked a bit.

I'm not sure what is best for Jack at this point, but I do know that we have to do what we can to get the seizures to stop. I rarely have pity parties for us because I know that it's not going to help. And we really are the lucky ones. Jack is still the child who everyone looks at and thinks that he's completely normal, I'm just worried that if we don't get these seizures to stop, he won't remain that child. And while I do not pity him in any way, I still worry for him.

Sunday, January 16, 2011

Random picture

Jonathan took this picture when we were at the TSC camp. This was basically how Jack and I slept each night. He woke up ever 1/2 hour to an hour so the only way to go was co-sleeping. This would be why we don't go places with him often. But the picture is cute, even if it's grainy because Jonathan knew better than to use the flash and risk waking us up!

Thursday, January 6, 2011

a day in cloth

There was this funny game on the cloth diapering board to take a picture at every diaper change. They were super cute so I though I'd share here too.

But first, let me update you on the medical stuff. The cardiologist appointment went okay. The good news is that the tumors didn't grow. Really, that's great news. The tumors also didn't shrink but it's hard to tell considering he's a moving target for the sonogram tech. We go back in another 3 months to do this all over again. If they don't grow again then we don't have to go for 6 months.

We continue to battle the seizures. We got a new monitor that can record any movement while he's sleeping. We have no idea if we are seeing an increase in seizures because we now know they are happening or if they really have increased. I think they really have increased, but who's to say.

I emailed one of the seizures to the neuro and he started Jack on yet another drug and wants to do a 24 hour EEG next week. The good news is that the EEG with be at home! We will take him to the hospital to have him hooked up and then send us home with a little backpack. His seizures look very different now. We see the neuro in 2 weeks (from now) and I am going to ask about reducing his other meds, because this is getting crazy.

And that brings me to today. Because he started the new med last night, today was hell. H-E-L-L! He was super cranky and I have been hit no less than 50 times. If it continues tomorrow, I'm calling the doctor. I don't know if I will survive another day like that.

Anyways, here is how he started the day and the best expression of how the day actually went. He's wearing an antsy pants pull-up cloth diaper. He got too tall for the previous diapers so I went with something should get us through potty training. It can be snapped on like a diaper or pulled up like undies. I really like them.

Then in his happy heiny cow print because I though he was going to take a morning nap, which he didn't. But I can add a lot of stuffing to it so that it can hold a lot.

So we got dressed to go out. This isn't a great picture, but it was made by a work at home mom at Dolce Baby. Unfortunately, it is almost too small.

Then he did have a nap, thank God. And then he was super man! Because lets face it, this kid really is a super hero. This diaper is almost too small too, but it goes with the shirt :-) And I don't have a link because I can't remember where I got it.

And because even super hero's do house work. (Another antsy pants)

And really the boots just make this outfit!

Monday, January 3, 2011

cloth diaper pictures

Pardon this post for some cloth diaper pictures that I am listing to sell. I'm linking here so I can post all of the pictures.

Bumgenius 3.0 one-size cloth diaper in excellent condition. All come with 2 inserts, most inserts are new. $10 each or $70 for all 8.

If you search really really hard you can see a few spots of discoloration, maybe. All look great.

Velcro is in good condition, all diapers were hung dry.

Some normal pilling, does not effect use.

Bumgenius 3.0 AIO organic one-size diapers. $12 each or $50 for all 5.

Very clean and soft!

These have by far been my favorite! There are a few spots on the inside where you can see some worn out spots. Does not effect use.

Bella Bottoms, hemp. Each has only been worn a few times. $10 each or $15 for both.

Some slight discoloration to the inserts.

For all diapers $120!

Extra stuffers! $2 for each on the left, microfiber. $4 for each on the right, microfiber/hemp (g-diaper inserts)