We received another call from the neurologist that Emeric's ammonia levels are elevated. Mayo is trying to get him in tomorrow. I'm waiting for a call.
We have an appointment for 8:00am Thursday, August 2nd!!!
I took the kids to Sucker Creek Preserve last week to go "hiking". When Kylie said we were going for a walk Kaydence reminded her it was "hiking" and not walking. LOL They had fun. It was a pretty short train but there were signs up explaining the area and Kylie thought they were pretty cool. We brought some snacks and they've been bugging me to go again.
Emeric has a Vitamin B12 deficiency. We don't know much right now, other than that he has to have the B12 lab done again. If it again comes back low he'll start receiving injections of B12. I'm not in a typing mood but wanted to update.
Today my nephew and another little boy from our church decided it would be fun to give Kylie a hair cut. This of course right after she decided she wanted to grow her hair "down to her feet". The first two are before pictures and the last two are the after. Hopefully you can see a difference! LOL
Sorry it's been a while since I posted last... I've been busy with Bible School! The girls are ready to stay home for an entire day I think. They love going to Rhonda's but they're getting tired. Emeric is doing good over there and everyone says he is such a good baby.
Emeric has been doing well. His seizures have lessened a lot since raising the Lamictal. We actually increased it again today and then in 5 days we'll increase it again. We had two appointments yesterday in Fargo for him. The first one was with the opthalmalogist to discuss his clogged tear ducts. She wants to wait a month and have us try to massage them a few minutes 3x a day and see if that works first. I told her there is no way he'll let me touch his face let alone for 3 minutes! So we go back in a month and she'll schedule surgery to open the ducts and also do a full eye exam.
We also saw the neurologist. She hasn't gotten back most of the blood work yet. She did get back the urine organic acid screen and his Methylmalonic Acid is still elevated. I guess that suggests a Vitamin B12 deficiency, which they also tested for, but we haven't gotten back yet. So at this point we're waiting on those results. She gave us orders for a couple more blood tests and another urine test.
She also wants to keep an eye on his head size. I mentioned to her that it was well over the 100 percentile and that it had jumped from the 50%. She said she wants to watch it and said it could just be a hereditary thing or it could be something else.
We also got an appointment at Mayo for September 27th so that's good news. I figured it would be this fall so even though it's 2 months that's fine with me. He's doing well and we've seen huge improvements on his medication. The neurologist noticed it as well. He's engaging more and interacting and he's babbling a lot. Yesterday he started pushing himself forward with his legs so I think in a few weeks or less he'll be crawling. We'll see!
We're taking the kids to the fair today. I think we're crazy since it's VERY hot. The heat index was 111!!! So we might not be there long!
Have a great day everyone!
That's the doctor's office of course.
Yesterday we drove up to Fargo to get Emeric's blood work and urine tests done. They poked him 3 times before finally giving up because his veins kept collapsing. :( So, this morning we went in again and thankfully they were able to get what they needed.
Kylie also had an appt. today. Just a 4 year well check. She's the healthiest kid I know and she did fine. She asked if she got to have blood tests today like Emeric. LOL. I told her no and that she should be happy because they aren't fun! She passed her eye exam with flying colors and I think she has better eye sight than I do. She also had a hearing test and the nurse kept telling her to raise her arm if she heard a beep so she kept flapping her arm up and down the whole time because she didn't really understand!
So now we're out of the doctor's office(keep your fingers crossed) until Tuesday. Then Emeric meets with the neurologist again as well as having an eye appt. to discuss surgery for his clogged tear ducts!
We're raising his meds today so if you think of praying for him I'd appreciate it. I worry about reactions when he increases quickly like that.
I've decided to start listing some prayer requests because I've had a few people asking what they could pray for. So, I guess for starters:
*Pray that we get quick answers to these tests and that our neurologist will know what needs to be done
*Pray that Mayo will accept him for an appt
*Pray for the girls, I know they're getting tired of being shipped all over the countryside while I drag Emeric back and forth
*Pray for us financially because it really sucks driving back and forth to Fargo constantly, especially with gas at over $3.00 a gallon again!
I want to buy the kids a Power Wheels Jeep. Can we afford it? No. After crying all afternoon I think I've figured out why I even want it.
I worry about Emeric and whether or not he'll live a good life. I wonder if there's something going on that might take him away from me. I wonder if his seizures won't be able to be controlled and he'll end up mentally retarded. I just worry.
I feel guilty. I feel like my girls are getting the shaft because if I'm not running Emeric to the doctor's office I'm on the computer researching crap or on the phone trying to get his medical records sent over, or talking to the insurance company figuring stuff out, or I'm hushing the girls because one of the therapists is here working with Emeric.
So I'm trying to make it up to them. I want to buy them things, I want to take them places, I want to let them eat pop tarts for breakfast everyday when they want them because I feel bad.
I want to buy them this stupid, meaningless power wheels jeep because I know it will make them smile, which will make me smile, which will get my mind off everything else. For a while at least.
I feel guilty for making it all such a big deal. There are plenty of people that deal with things far worse than I do everyday and have a lot more strength than I do. I feel like on the outside I do have that strength but on the inside I just want to hide away in my room and pretend like everything is fine.
I want God to heal Emeric. I don't know why he won't. I don't know what his plan is but right now I'm feeling like I don't like his plan unless it includes not making Emeric suffer.
I can't get over this guilt. I will forever live with the guilt that had I not had so much intervention in my pregnancy he would be fine. It is all my fault and I didn't even NEED any of that. I could've chosen to live with the pain and held off but I didn't. I was selfish. It wasn't even that bad, just an annoying ache. But, when it was all going on my husband paid attention to me and that felt good. I know in my heart I could've went without most of the stuff I took while I was pregnant and even though doctors were telling me I needed it I know I didn't. I could've said, "no the pain isn't that bad" and dealt with it, but I didn't, and now I'll pay. Worse than that is Emeric will pay. My poor baby is going through all of this because of me.
None of this makes me love him any less. If anything I love him more. It isn't about being disappointed that he's not the "perfect boy" we'd hoped for, because he is. It's about the fact that he'll live with all of this because of me. I know it's "just" seizures but right now it's feeling like a death sentence.
I got a recent picture of Emeric, I thought it was cute! :)
The neurologist called again today and said his med levels were really low in his blood still. How frustrating! So now she wants us to raise the levels and also increase the Lamictal next week, a full week sooner than we'd planned. I told her the Lamictal was making him an insomniac so she wants to see about switching him to Depakote.
As far as the urine results... They pretty much indicate a metabolic disorder. Problem is there are over 1,000 metabolic disorders so it will take more extensive testing to pinpoint anything. Here's a link for anyone wanting to know what a metabolic disorder is: http://www.nlm.nih.gov/medlineplus/metabolicdisorders.html
I've been talking to a woman online who knows how to read lab results and knows a lot about metabolic disorders. I emailed her the full report and she said it sounds like a Fatty Oxidation Disorder: http://www.fodsupport.org/fods_defined.htm
Of course that's just her opinion based on her knowledge and I'm not taking it as fact, it's just something else to pursue. I guess the fact that his seizures increased dramatically when he started eating solid foods is a huge indication of a metabolic disorder. It makes sense, I mean when you start eating food your body has to breakdown the proteins and with a metabolic disorder the proteins aren't able to be broken down properly.
Anyway, it's late and I've googled myself to death so off to bed!
We got a call yesterday from the neurologist letting us know Emeric's urine came back abnormal. Which means more redoing the test along with further testing. His urine tested positive for organic acids which suggests a metabolic disorder. We won't know anything more until the test results come back and that may take a couple weeks. In the meantime the Lamictal has obvious started to kick in. I've been hearing of the infamous insomnia associated with Lamictal and now I'm seeing it first hand! Yippee! (insert sarcasm). Last night Emeric was up until 10:30pm which is about 2 1/2 hrs past his usual bedtime. He's also getting up at night again which is more than likely from the meds. I really hope once his body adjusts to the Lamictal that he'll start sleeping better. Although since we are doubling the dose in 2 weeks I don't see any light at the end of the tunnel. Yet.
Some positive things: Yesterday Emeric clapped his hands!! This is the first sign of imitating us we've seen from him. The PT was pretty impressed! He tends to hold his left hand in a fist a lot and I mentioned this to her. She said she had noticed it but at this point she wasn't sure why and the fact that he uses it with only slightly less preference than the right is a good sign!! She'll be back in 2 weeks.
Kaydence has started getting quite the personality. This is also known as: not listening. She enjoys standing, feet firmly planted, until the umpteenth time you call her. I've started going and taking her hand myself and she doesn't like it in the least so she's been increasingly compliant since that's obviously a better option than not doing something yourself. ;)
Kylie is also doing well. She's learned to write her name and she'll copy most any name you write down for her on her magna doodle. She continually talks about going to school, which is still over a year away. It seems everyone is shutting down my idea of homeschooling. First Jake, now Kylie! Kylie also has her 4 year well check next week and she's looking forward to it. LOL I think she feels important that she's the one going to the doctor instead of Emeric. She NEVER goes to the doctor. She's never sick. She asked if she was getting shots or blood work. LOL I said no. She wanted to know why and I just said because you don't need them. I didn't want to explain to her that I've decided immunizations are a huge pharmaceutical money maker, that the diseases she's being vaccinated for are not life threatening, that they use formaldehyde, aborted fetal tissue, monkey tissue, aluminum, and God knows what else as preservatives, and well, I'll just stop there. I'll save that post for another day! :D
I picked up some groceries today. Since we're trying to stay away from High Fructose Corn Syrup it takes me at least twice as long at the grocery store. All I needed today was Miracle Whip and cereal. Easy right? Wrong. Even Miracle Whip has HFCS in it! Geez! I tried to think of another option and got tired so I just grabbed some and justified it by telling myself that the kids don't eat it anyway! I'll work on their health and then mine! :) The cereal aisle was the same thing. I finally found two boxes of cereal without a ton of crap in it, but it took me at least 10 minutes! It's ridiculous!
Well, as usual I'm long winded. I should probably get offline and take advantage of the fact that Emeric is asleep and Jake's mom has the girls and do some cleaning!
Sorry I meant to update on Monday after we saw the neurologist.
Emeric was put on Lamictal, in addition to the Dilantin. As soon as the Lamictal reaches a high enough level we'll cut out the Dilantin.
Last night Emeric had a lot of cluster seizures again. He woke up from sleep and acted really out of it. In about 15 minutes he had around 10 seizures. Jake and I were deciding whether or not we should give him the Diastat. We probably should have but we were really nervous and hoping they'd just stop on their own. Which they did thankfully!
This morning he woke up with a low grade fever & runny nose so I'm sure that's part of it. Fever lowers your seizure threshold so they want us to keep him fever down.
The girls have been doing well. They got to go to grandma's on Monday while Emeric had his appt. and they always enjoy that. They never want to come home! :) Kaydence has been doing really well with going potty on the toilet. Thank goodness! I was getting sick of that! She's also been off dairy products for a couple months and doing good. I think the biggest improvement is she's sleeping better. Plus we're all eating healthier! :)
We've started cutting out anything with High Fructose Corn Syrup in it from our diets. Unfortunately EVERYTHING has HFCS in it, so it's hard to find good food! If you read labels you'll see even "healthy" whole grain bread has HFCS in it!
Well, that's all for now folks! ;)
Yesterday Emeric woke up and was playing on the floor while I got the kids ready... I walked past him and all the sudden I heard him say "ma ma"!! I started crying! LOL I couldn't believe he FINALLY said something meaningful!! :) All day yesterday he said ma ma, ba ba, etc... I'm so happy! :)
On another note... We decided to go in to the beach yesterday since Jake was working. We met Erika and Gavyn there. We stayed for a couple hours and let the kids play and swim and when we got ready to leave we went out to the van which now had a flat tire!!! I didn't know who to call so I called Jake's dad and he came in. He was about 45 minutes from town so we waited for about an hour and a half before he came and put the donut on. Which of course was also FLAT! Ugh! I drove with it flat anyway over to Walmart and had the tire repaired. It ended up being a looooong day in town and we didn't get home until right before a BBQ we were supposed to get to.
We got home, changed clothes, and headed over to the BBQ. The church was throwing a party for the 4th of July so we ate dinner, played softball, and then watched some fireworks. The mosquitoes were terrible and we finally brought the kids inside! We got home around 11:00pm and put the kids to bed.
Today I have no plans... I need to get the girls clothes put away, which is a day of work in itself! Who bought them all those clothes anyway?? ;)
Today has been a rough day.
This morning Emeric woke up and had 7 seizures within less than 10 minutes. I knew these are considered "cluster" seizures and aren't a good thing. He quite for a while so I figured he'd be ok. A few hours later it started again. I called up to the neurologist's office and talked to her Physician's Assistant(she's on vacation). Her PA recommended I bring Emeric to the ER and have them give him Diastat. Diastat is a suppository which will stop seizures immediately. I told her he again had stopped the cluster seizures so I wasn't sure if we should do that or not. She told me she'd get a hold of the neurologist and call me back. Well, she called back and the neuro(Dr. Elzind) wanted Emeric to go have a blood draw to see how much Dilantin was in his system. She also called in a prescription for the Diastat. We went in and had his blood drawn and headed home. As soon as we got home the PA called and said the Dilantin was really low which is why it isn't helping and that Dr. Elzind wanted us to go to the ER and have them give him a loading dose of Dilantin and then have his levels rechecked 2 hours later. So...
We got to the ER and they had to try to get an IV in. They tried his arm and couldn't get it to work so they had to try his foot. Thankfully that worked. I about broke down crying but Kylie was with and I didn't want to explain myself. I felt so bad for him having to be put through all of that! Anyway, we waited around for 2 hours and had his levels rechecked. I haven't heard back so hopefully that means they are high enough, otherwise we have to go back to the ER and repeat all of that again and honestly I cannot handle having to put him through that again. We're also increasing the dose on Thursday and hopefully that will help. About an hour and a half after he received that loading dose he had another seizure. :(
It's kind of disheartening because I'm worried that the meds aren't helping him. I also read today that the prognosis is poor for kids whose seizures start before a year and if they affect a large area of the brain. Both of those things are true for Emeric. I guess I need to stop reading before I drive myself crazy and just pray that he beats those odds.
Please keep him in your prayers! I hate seeing him go through all of this!
