I tried to get some good pictures of the kids to make Christmas cards. They didn't turn out all that well so I'll probably be trying again in the next couple days!

Yesterday I started feeling sick and by evening I was really sick. I went to bed at 8:30 and I thought I was fine this morning until I got up. Now, I feel really sick again. I'm hoping I don't have to call Jake to come home from work!

The girls started gymnastics on Tuesday. I think they're really going to like it. Kaydence was pretty leery of joining until I mentioned the trampoline and I think that won her over! She's about a head shorter than all the other kids in the class of 3-5 year olds. Since she turns 3 next week the teacher let her join to be with Kylie, so that was nice. Kylie carried her around a lot of the time though, lol. She was very protective of her, it was cute to watch. I think it's good for them to get out and do something just for them.

We got a call yesterday from our doctor to tell us that Emeric still has the bacterial infection in his colon despite the antibiotics he was on for 2 weeks! This means we're probably going to have to put him back on weeks of antibiotics to try to clear it up. He was just starting to gain weight but if we let it go he'll probably start losing again.

Physical therapy has been going well for him. He's finally cruising along furniture although he can't figure out how to get around corners yet! :)

The occupational therapist only comes out once a month, which isn't much, and I'm pushing for more. She screened him yesterday for sensory processing disorder and if he qualifies that would give him more therapy, so we'll see.

Well, I'm going to go try to lay down and put in a movie for the kids. Kylie is old enough now that I can ask her to help me watch Emeric. It's nice but I know sometimes I'm just being lazy when I ask her to go do things so I try not to do that too much!! :)

Have a great weekend everyone!

Christmas pictures

Postponed...

We had Emeric in this morning for his pre-op and the doctor won't clear him for surgery. Understandable since he's coughing, got a runny nose, running a fever, etc. but it sucks because we NEED this spinal tap before they'll start him on treatment!! So, I'm hoping he'll be well soon because he goes back in 2 weeks and if he's well then they'll reschedule the procedures. We could go ahead and do the spinal tap without anesthesia but it'd be so painful for him I know I would feel horrible.

We're all turkeyed, I mean tuckered, out!!

We had a good Thanksgiving. We went to Katie's (my sister) house and had dinner with her and her family and my mom, Roger, and the boys. My uncle came for a while too. The kids enjoyed playing together since they don't get to see each other real often.

On Friday Katie and I got up and left her house at 3:15am to go shopping. Are we crazy you ask? Well, yes. But I came to the realization we were much more grounded than most people shopping. There was a crowd of people outside of Menards at 4:45am and the store didn't even open until 6:00am! I am NOT that much of a die hard. Frostbite just isn't for me. Overall it was a good day, I got lots of great deals and wasn't too annoyed with the gazillion people also looking for good deals, which ends up leading to pushing, yelling, sprinting through stores with carts, stealing carts(yes, this happens), etc.... It was fairly comical and I wished I'd have had a camera! :D

Tonight we had Jake's dads birthday so once again we filled ourselves with fattening food. I think I've gained at least 5 lbs since Thursday!

We just got home and put the kids to bed. Emeric is sick again. He's running a fever, coughing, snotting all over the place, and just acting miserable. I'm worried he's going to develop pneumonia. He has an appt. tomorrow morning for a pre-op before his eye surgery on Thursday so the doctor should be able to listen to his lungs, check his ears, and hopefully he'll get over this quickly. He's seemed tired a lot lately, or at least more tired than usual. Especially in the morning. He'll wake up and within an hour he's back in bed. It's so hard to know when something is "normal", related to sickness/teething/whatever, or related to the mitochondrial disease. If I tell myself it's normal than I'm ok but when I start thinking about whether or not it's related to his disease it's hard because I know that fatigue means his cells aren't getting enough energy, which is obviously not a good thing. I don't know, I try not to think about it too much honestly.

Jake has been really worried about Emeric lately and we finally talked about it some last night. Not much but enough to let me know it's been really weighing on him too.

Anyway.... It's the start of a new week and a busy one at that! Doctor appt. tomorrow, therapy a couple days this week(for Emeric, not me, ha ha!) and then Thursday the eye surgery and a spinal tap. HOPEFULLY! We're trying to get it worked out so they do them both together because I have no desire to put him under two separate times. I really hope they get it worked out, I'll be praying for that!

Have a good week!!

It's one thing after another...

Kaydence has been coughing for 6 weeks so I decided to take her in today to see if it was more than just her asthma. The cough was mostly at night which is a big symptom of asthma but the last couple days it's gotten a lot worse and she's been coughing nearly non stop. Turns out she has pneumonia. She also has an ear infection. No wonder she hasn't been sleeping well! The doctor gave me the choice of whether or not to put her on antibiotics or to try to let her get over it on her own and I decided that since she's had it for a month and a half and hasn't gotten over it yet that I might as well treat her. Also I really can't have Emeric getting it. The doctor thought too that she most likely wouldn't get over it on her own. So please pray Emeric doesn't get this! He's still got something going on, he's still running a low grade fever and acts like he doesn't feel all that spectacular.

The next couple weeks will be busy for us with Thanksgiving this week, Black Friday shopping on well, Friday obviously, :) and then Jake's dad's birthday party on Sunday. Next week Emeric has a doctor's appt. on Monday and then Thursday he has his tear ducts irrigated and a spinal tap. My goal after that appt. is not to have ANY appt's until next year. Yeah right. I can hope though! :) All I want for Christmas is my two... kids to stay out of the clinic!! After Christmas and New Year's Emeric is having his 48 hour Video EEG which I am already DREADING. I think Jake will hopefully stay at the Ronald McDonald House there since last time he slept in the van! This time it's a little bit colder. The room is tiny and they only allow one parent to stay overnight but I told Jake that's not a good enough reason for him to get off the hook and I end up being the only one there to keep Emeric from pulling 25+ cords from his head for 2 days! Plus I figure we might as well make it a point to stay in the Ronald McDonald House in every state. Just kidding!!

Have a Happy Thanksgiving!!

It's one of those days...

Jake is gone overnight for work and it's only 9:00am and I'm bored already. I really want to decorate for Christmas but Jake would kill me if I put the tree up any earlier than the day after Thanksgiving. He really hates it up that early even but he deals with it!

The girls are going to start gymnastics soon. Well, at least I hope. They talked about taking skating lessons but I'm not so sure. I can't see either of them enjoying it(maybe I'm just not giving it a chance) and it's cold and it's on Saturday's. Gymnastics is on Thursdays, it's a warm gym where I can sit with Emeric, and they'll be so cute in their outfits. :) So we'll see. I want them to be able to do something. Everything has been so focused on Emeric for so long, well forever in their eyes, that I want something just for them. Technically in 3 months Emeric can start. They start them in a mommy and me class at 18 months. I think we'll stick with PT instead. LOL

Emeric is doing good. He isn't having seizures so the new ones he had must've been from his fever. He has an appt. Monday with the neurologist so I'll talk with her then about it. He's also having his spinal tap in the next couple of weeks and then having his tear ducts irrigated. I feel so bad for him having such a busy month of procedures. Hopefully this spinal tap will give us our answers and we won't need to go through with the muscle biopsy.

Well, I hear Emeric splashing around in the toilet so I'm off. :) Have a great day!

Kaydence's birthday is coming....

And I asked her what she wants.

A tomato. That is all.


She's a strange child. I can't figure out where she gets it from! LOL

Long weekend

Emeric was sick all weekend with a fever. With him we have to be extra cautious as a fever can trigger new symptoms with this disease. Thankfully today he feels much better but he was so miserable all weekend. He also developed some new types of seizures but I'm hoping they were just from the fever and we won't have to deal with those now.

The girls are doing fine. Yesterday Kaydence was up at 8:30 and decided to turn the tv on. She was lying there, inches away from the tv with her hands behind her head and I walked out in the livingroom and without looking away from the tv she said, "Mom, will you throw in a pizza for me." LOL As you can imagine, I got on that right away! HA!

Pictures from Mayo

The first few pictures are of Emeric's scope procedure.

Some recent pictures

Results

We finally got our results from Cleveland: Mitochondrial Disease with a secondary neurotransmitter disease. The neurotransmitter disease is treatable. Not curable, but treatable. They'll start him on something for that after he has a spinal tap to determine exactly which neurotransmitter disease he has. They'll also be starting him on something called a "mito cocktail" which is basically an assortment of vitamins and supplements meant to try to slow down the progression of the disease. There is no real prognosis with this disease because it's so different for every child. We'll most likely be going back to Cleveland for a muscle biopsy in the next few months.

We went to Mayo at the beginning of the week for Emeric to see the GI and have an endoscopy done. The endoscopy came back essentially normal, just a couple small things there. We did figure out(hopefully) why he's losing weight. He has a bacterial infection in his colon. He's on antibiotics for that for 14 days and then they'll re check his stool. If the infection isn't gone he'll have to be on weeks and weeks of antibiotics so I'm praying it's gone and he'll start gaining more weight.

The girls came with to Mayo and they were thrilled. The Ronald McDonald house was full so they put us in a room for a discounted rate. The hotel had a waterpark so the girls were really excited. I was glad I decided to take them. I think they were getting tired of being left at home all the time.

We took him in yesterday because he's sick. He's running a fever and it came on really suddenly. After 2 chest x-rays, blood work, a strep test, etc. they can't find anything wrong. The doctor was actually more concerned since she couldn't find anything than she would've been if it would've been something obvious like an ear infection, or a cold. They said we could take him home but if he got any worse they wanted to admit him. Thankfully he didn't. Now this morning he's still pretty sick but his fever came down with Motrin so that's good news. Yesterday at the clinic he had 2 myoclonic(jerking) seizures that I'm assuming were from the fever. I'm really hoping that's why and that he's not going to start having that type of seizure now. :(

That's my update for now. The girls are screaming at each other and if I don't go throw them in their cages now they'll wake Emeric up.(that's a joke of course! ;))