Friday, June 29, 2007

Well, it's nice to be home. I got a pretty good nights sleep last night. Anything is better than a hospital chair/bed. We started Emeric on his medication last night. Today I did notice a few seizures, I'm not sure how long the meds take to kick in. Hopefully soon!

Tomorrow we're having a "Pamper Me" day up at church and it's a fundraiser for our church youth group. They're giving haircuts, seated massage, manicures, etc... I'm excited because I really need a haircut! Other than that we don't have any plans for the weekend!

Hope everyone has a good 4th of July weekend!

Thursday, June 28, 2007

A Diagnosis

Well, we're home from the VEEG. It went well. Emeric was NOT thrilled(obviously!) to have the electrodes glued to his head but overall he did pretty good. The EEG did pick up quite a bit of seizures activity, most of which we didn't even notice. They had him hooked up for 24 hours.

Today we met with the neurologist. She'd ordered some blood work and we did get those results before we left. A few things were high but she wasn't too concerned about most of them. The two she's going to have redrawn on Monday were both related to the liver enzymes. He'll go in Monday to have those redrawn and also some other bloodwork to test for metabolic disorders and genetic conditions.

The doctor has diagnosed him with a Generalized Seizure disorder. She put him on Dilantin for now. She won't keep him on this as Dilantin is a broad spectrum drug and she wants him to be on something specific for his seizure type. The problem is she is going out of town and cannot review his EEG in enough time to determine what meds will work best for him. So, we meet with her in about a week and she'll switch his meds then.

If the blood work comes back and doesn't show a cause for the seizures then she'll need to do more extensive testing.

We asked for a referral to the Minnesota Epilepsy Center so we should get more information on that when we see her in a week.

Along with this Emeric's Physical Therapist has said she believes he has mild hypotonia(low muscle tone) and that could be what's causing some of his developmental delays.

Well, it's late and I'm super tired! I didn't get much sleep last night! :)

Monday, June 25, 2007

Be forewarned...

I'm in a really bad mood right now so basically this entire post is about how pissed I am at various people....

First in line... the stupid neurologist office. They called today and said Emeric cannot eat for 6 hours before his EEG which is at 1:30 PM!! I called back and asked to speak with the neurologist to figure out why he can't eat since he just had an EEG last week and I nursed him while they put the cap on! So of course her receptionist calls me back! @@(That is me rolling my eyes!) I tell her receptionist there is no way he'll go all day without eating so she says she'll call me back. So she calls back and says, "yep, he can't eat for 6 hours before!" I told her it was ridiculous to expect a baby to go all day without eating and that they should've scheduled it in the morning! She says it can't be scheduled in a morning and wants to know if I'm sure he can't make it all day because after all, I can feed him at 7:30am. Ugh, yeah I'm sure. @@ So then she says she'll talk to the neurologist and call me back AGAIN. Yeah, there was a reason I asked to speak to the NEUROLOGIST and NOT her receptionist!! @@

Second in line... Kaydence. She's been peeing on the floor all the time lately! She wants me to physically take her to the bathroom myself and take her underwear off for her, both of which she can, and has, done herself. So I've been saying no, that she can do it herself. Well, she doesn't agree and pees on the carpet! Then this afternoon we're standing .23" away from the bathroom and she says she has to go. I tell her to go. She starts screaming and pees in front of the toilet in her underwear! I spanked her, and yelled at her and of course now I feel like crap but OMG I am SOOOOO sick of pee all over the dang floor. Not to mention all the underwear and shorts I wash through the day! So there went the no spanking. She hasn't been spanked in months. Well, she's apparently going to continue being stubborn because she's been sitting on the toilet for 10 minutes and won't get off without me taking her down. Yeah, not happening.

I'm in a bad mood. I need to get out of the house!

This weekend we went to Grandma Kim's for a birthday party for Kylie. Lots of relatives, food, and swimming so it was fun. Kylie loved the water and swam with her cousin Baylee(in matching suits ;)) most of the time. We stopped and had lunch with my friend Anna and her daughter Ryann on our way home. The girls enjoyed seeing Ryann.

Jake was home from his motorcycle trip and burnt to a crisp. He had a bandana on his forehead so there's a very distinct line crossing his face. LOL. He had fun and is already talking about buying another bike so I can go with. Rightttttttt...

The kids are crabby today and so am I. I don't think any of us got great sleep all weekend and it's obvious. The girls are watching Barbie Fairytopia and I'm hoping Kaydence will fall asleep!!

Friday, June 22, 2007

Today I've got a ton of cleaning up to do around the house. I've been putting it off all week but we're leaving tomorrow for Grand Rapids and I can't keep putting it off. I did get my garden partially weeded last night though so that was good. I sunburned my back horribly though which is oh so comfortable!

Jake is leaving tonight for the weekend. He and three other guys are driving their motorcycles into the Badlands in SD. I'm going to head to Grand Rapids for the weekend because the thought of sitting cooped up in the house all weekend makes me want to poke myself. My mom is throwing a birthday party for Kylie since they didn't make it to our house for her birthday. She's pretty excited!

Now, for a change of thought.... I need a calendar. I have a really small one with approximately .2523 millimeters of writing space and it's not working out. Emeric has so many appointments right now that I could really use an 8x11 sheet of paper for each day. Next week: Monday-WIC appt., Tuesday-OT and I'm also pretty sure I scheduled PT to come out the same time as well! Ugh. I stupidly didn't write down when she was coming thinking(naively) that I would remember amongst the other hundred appt's we have. So now I have to find a way to get a hold of her. Wednesday the Early Childhood Teacher that plays with Emeric is coming out and then we leave for Fargo for the 24 hour Video EEG(VEEG). So far Friday is open, which I plan on keeping that way because nothing really is more important than garage saling. ;)

Well, this is way too long and my hair is getting dry without styling crap in it. Which means I look terrible. Adios.

Wednesday, June 20, 2007

We're starting to get somewhere

Emeric had an appointment with a pediatric neurologist yesterday. She does believe that Emeric is having seizures but wants to schedule a video EEG where he will be videotaped as well as being hooked up to watch his brain waves. That will last 24 hours and he'll be admitted to the hospital for 2 days. She said IF that comes back normal and shows he is not having seizures she wants a sleep study done to rule out narcolepsy! She did say she's never seen narcolepsy in a baby this young and is pretty sure it isn't that.

I talked with her about Emeric's developmental delays as well as his autistic like behavior. I told her our family doctor had told me that Emeric has autism. She said she does see a lot of characteristics of autism but that she wants to rule out seizures first. She said seizures can really mess with the brain and could be responsible for his delays.

There's a neurology clinic in Minneapolis that she's going to try to get us into this week for Emeric's EEG but if they can't fit him in then it will be next Wednesday-Thursday in Fargo.

I'm just praying for some answers. It's hard not knowing what is going on. I'm not sure which diagnosis seems "better" right now. Autism or Epilepsy? I guess we'll wait to see the results of the upcoming tests before we start worrying too much. Ok, well I've already passed the point of worrying too much but I'll try! ;)

Please pray for Emeric and for the specialists working with him that they'll figure out what's going on and how to treat it!

Early Intervention is also coming out once a week to work with him for 30 minutes and so far it's been ok but he really doesn't tolerate much more than 10-15 minutes of interaction and even then he doesn't really interact so it's a struggle for the women to get him to actually do what they want him to do. But, it's still interaction and that's what he needs. I'm planning on talking to Carmen(she's in charge of which therapists come out and when) and seeing if it's possible to give him more services. 2 hours a month is just not enough.

Well, this is getting long. I better get going! The girls are hungry! :)

Monday, June 18, 2007

Why we're here...

I started this blog in hopes of keeping family and friends updated as to what is going on in our lives! The kids are doing well.... Kylie just turned 4 and she's pretty excited about it! Don't dare call her a little girl because she will correct you. "I'm the BIGGEST girl mom!" she'll say. Kaydence is 2.5 and she has quite the personality for such a short stature. She loves to copy her big sister and follow her around quite a bit, which Kylie just loves! ;) Emeric will be 10 months old on Thursday and I can't believe he is that old! I can tell he's contemplating crawling but for now it isn't high on his priority list. Early Intervention has been coming and working with him as he is delayed in most areas. Mostly social/communication skills but they're also going to work with some fine and gross motor skills as well. Emeric has an appointment with a pediatric neurologist tomorrow because he's been having seizures and we're not sure why. I'm praying for some answers tomorrow but I have a feeling it might be a long road to getting answers as that's been my experience so far!

Jake is doing well. He's working with his uncle doing construction and he also has a lawn mowing business in the summer time and just hired his first employee! :) He stays busy and when he's home he spends most of his time playing with the girls! He just built them a swingset, which they are very proud of!

I've been spending most of my time researching online and worrying more than is healthy, about Emeric. I also planted a garden this year and look forward to all the vegetables and flowers later this summer! Unfortunately it's been raining quite a bit and I haven't had a lot of time to work down there. Not to mention with 3 kids everything seems like a bit more work!

I hope to keep this updated so you all can read about our family and see how we're doing!


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