I'd love to say I took these pictures of the butterflies in our backyard but I suppose it'd be too obvious that we don't have beautiful flowers and butterflies in our yard. I took these at the Minnesota Zoo in their butterfly garden.
On Friday night we ended up taking Emeric up to Fargo to the ER. He was running a high fever & not acting like himself. His neurologist wanted us to bring him in to be seen and rule out an infection. We got there at 9:00pm and they started an IV, took blood, & urine. The doctor also wanted a chest x-ray and possibly a spinal tap. We were there about an hour and a half and Emeric finally fell asleep. The doctor came back in and said his blood work had come back normal but he wanted to give him a high power antibiotic through IV and keep him for 24 hours. I told him I didn't see any reason to give him antibiotics if he didn't have an infection. He agreed & said he only said to give him the antibiotics because that's what the pediatricians do but he agreed you shouldn't treat something until you know what you're treating. So we took him home.
Saturday morning we got up and Emeric was still running a fever but seemed to be feeling better so we decided to head up to our church family camp out. We got there early afternoon and the weather was kind of dreary but we still had fun. Played lots of volleyball and four square. We sat around the campfire for a while and ended up leaving at about 10:30pm. We didn't want to stay since it was cold, rainy and Emeric wasn't feeling great. We did end up driving back up this morning for church service and lunch and then this afternoon we played volleyball & four square again and headed home about 4:30pm.
We just finished dinner & gave the kids bath and the water was disgustingly black. I guess that's what happens when you camp. Jake and I are hoping for an early bed time because we're both tired & sore from getting more exercise than we're used to! :)
I came across a verse today and it made me stop and think. It reminded me again of the need to trust in God and leave my worries at his feet.
"Therefore we do not despair, but even if our physical body is wearing away, our inner person is being renewed day by day. For our momentary, light suffering is producing for us an eternal weight of glory far beyond all comparison because we are not looking at what can be seen but at what cannot be seen. For what can be seen is temporary, but what cannot be seen is eternal." 2 Corinthians 4:16-18
I think all moms naturally worry about their kids. I guess in my mind you need to worry sometimes. It's that moment of worry, that "gut feeling" that makes us realize what we need to do for our kids. On the other hand, constantly worrying only tells me I'm not really trusting God. It's as if I'm saying, "ok God. I trust you, but here's what I think." It's as if I need to make sure I search out each and every possibility to every situation so I know what to do because well, what if God misses something?? What if he's too busy that he doesn't really see what's going on?
My goal for this week is not to worry. Emeric has an appt. at Mayo on August 27th & yes, I'm hoping for more answers, but in the meantime I just want to enjoy my time with my kids & not be preoccupied with worry. Besides, it's Emeric's birthday in 2 days and I want to have a fun, lighthearted day.
Please continue to keep us in your prayers. I've really been able to feel your prayers throughout all of this so thank you to everyone! Some specific things to pray for(If you're the kind of person that needs specifics, like me!)
Pray for wisdom for the doctors that they'll know what's going on with Emeric, what tests to run, etc.
Pray for Emeric that he'll be ok with all the blood work again and any other tests they have to run. He's started getting pretty nervous when we lie him down on a table of any kind. I suppose he thinks they'll poke him.
Pray for the girls that they'll be ok while I'm gone again. Last time I think it was hard on them.
Pray for me that I'll stop worrying about everything so much and quit relying on Mr. Google(that'd be the internet of course) to diagnose him myself! :)
Pray that I'll be able to get into the Ronald McDonald house again because it would make it a lot less of a struggle financially if we could stay there.
I made this for Emeric's 1st birthday.
http://www.onetruemedia.com/otm_site/view_...0fde5110dc7407d
We got a Twister game at a garage sale last week and the girls love it. Kylie knows her left & right now so it's funny watching her try to stretch and touch all the colors. She keeps saying it's too hard. :)
I think the girls are spoiled. Last night before they went to bed Kylie said, "Where are we going in the morning?" I said, "nowhere, we're staying home". You'd have thought her world ended. She started bawling about how she didn't want to stay home and just wanted to go SOMEWHERE! I picked up my eyes off the floor after they rolled out of my head and told her we didn't NEED to go somewhere everyday. Kaydence piped in that maybe we should go to Pizza Hut. NO girls, we're going to bed. So today they are fine staying home but insisted they needed to watch Dora. Ok, fine, then I can finish the laundry. Two seconds after they sit down they both insist they need juice. Kaydence is lying in a model like pose on the chair, with her blanket and says, "I need juice". Man, I'd kill for that. Just to lie around all day curled up with your favorite blanket, demanding things! Pfft.
I don't think Emeric is feeling well today. He's running a low fever and sleeping more. Which means he's pretty much never awake because he's been sleeping 17-18 hours a day for the last few days! :( I'm sure it's his medicine but man, it stinks. I feel like he's missing out on everything because he's sleeping so much!
Did I mention in my last post he's crawling?? He pulls himself around like a little worm and the girls are pretty unhappy that he can now get into their toys. I think it's cute! :)
*These new pictures are ones I took of Kylie to send out for her 4 year pictures.*
I figured I should write something since it's been almost a week. Nothing much has been going on in our lives except for the usual... Girls fighting, cleaning house, girls fighting, oh wait, I mentioned that! Ah, they're driving me crazy! They scream & yell at each other all the time! When they're not fighting however they play together like best friends! Go figure!
Jake and I celebrated our 5 year anniversary on Friday. We didn't do much, just went out to eat, but it was nice to get a break! :)
Emeric is doing good. I talked to our neurologist today at Mayo and asked him a bunch of questions that have been on my mind. He still thinks Emeric has a metabolic disorder but he said typically there are clues as to which disorder and in Emeric's case there are basically too many clues. Did you read that... there are too many clues! AGHGHH! First we want clues and now we have so many they can't narrow anything down! UGH!
A huge positive though is he's started crawling!!! It's so cute, it's more of an worm crawl, but he gets around none the less!
We don't have huge plans for this week. I'm trying to get invitations addressed for Emeric's birthday party and we have church family camp this week but otherwise not much is happening around these parts!
We headed to Mayo last Wednesday. My sister in law, Rhonda, came with me. We got to our hotel around 9:30pm Wednesday night and we were both tired. We watched the news for a bit about the bridge collapse and were thankful we decided to take another route instead of going on 35w.
THURSDAY:
We had an appt. with the neurologist in the morning. He wrote down a detailed history of Emeric's life and everything I had any concern over. He was awesome! He listened to everything and didn't say much other than scheduling some tests. He wanted a ton of blood, urine, an EEG, hearing test and consults with a dermatologist, gastroenterologist, geneticist, and ENT. We found out none of the consults could get done for quite a while so they told us the best thing to do if we needed them done right away was to get on their cancellation lists.
After that appt. we headed to the lab to have a bunch of tests done. The neurologist wanted a sweat test done to check for cystic fibrosis and that took about an hour.(It came back negative, just in case I forget to mention that later).
After the labs we ended up being able to get into dermatology right away. I don't know how you go from not being able to get an appt. for a month to being able to get one in the next 30 minutes!
We saw the dermatologist because of the birthmark on Emeric's scalp. It's called a nevus sebaceous and it can be related to neurological problems. The thing is, if it were, the MRI would've shown that. So basically it's completely unrelated. She does suggest getting it removed when he's around 12 because it can turn into skin cancer.
We left her office and went and had a picture taken of the birthmark. Not per my request, it was for them. LOL They actually were kind enough to send them to me! HAHA
We got out of the clinic around 4:00pm. It was a long day.
After we left Rhonda and I checked in to a different hotel that was closer to Mayo & then went and got supper. We did some shopping and headed back to the hotel. Our plan was to get to the clinic early Thursday morning and try to get those other consults done.
FRIDAY:
We got to the clinic at 7:00am and checked in for more blood work. We got that done and headed up to the 19th floor to see about getting in to see the gastroenterologist(GI). They told us they could probably get us in around 8:45am. Rhonda waited down on the 9th floor to try to get in to genetics. They ended up telling her we could get in at 9:15am! Crap! So, we decided to go with genetics since it was an appt. with 3 specialists and I figured it'd be hard to get into again. During this time we got a phone call that said they had a room for us at the Ronald McDonald house!!!
We met with genetics at 9:15am. They took a detailed family history & did a full exam, where they measure everything from distance of their eyes, distance of their nipples, to the length of their toes. Basically they're looking for anything that suggests a genetic disorder. After a 3.5 hr. appt. they weren't able to find anything obvious. They did order chromosomal tests to be done though and those results will be at least 2-3 weeks.
What their opinion was is that the B12 deficiency is causing problems. They found he was also anemic. They're questioning a possible metabolic disorder. Other than that we have no answers yet in that department. They scheduled a consult with a hematologist because of the blood issues.
After getting out of there at 1:45 we went and ate lunch & then went back up to try to get into the GI. We waited for almost 2 hours before they said we weren't going to get in.
So we left the clinic around 4:00pm and checked into our room at the Ronald McDonald house. It was so nice there! They give all the kids a quilt/blanket that local churches have provided. They had a full kitchen there so we were able to get some groceries and save money on eating out!
SATURDAY:
We didn't do much except be lazy and lie around. Which was a nice change since we were both tired. We did some shopping but Emeric was tired, it was raining, and we decided to just go back to the RMH. Emeric had a lot of seizures today.
SUNDAY:
Rhonda left in the morning and Jake and the girls decided to come down. There was a big play room & outdoor play area so the kids would have fun we figured. Emeric and I borrowed a stroller and went walking downtown in the morning and then I came back and put him down for a nap. Jake and the girls ended up getting there around 5:00pm. The girls thought we were at a hotel and wondered where the pool was! :) We went out for dinner & then came back and went to bed.
MONDAY:
Emeric had an EEG scheduled for 7:30am so I got up early and took him while Jake stayed with the girls at the house. The EEG went well. They didn't have to sedate him so that was nice! They monitored him for about 30-45 minutes and then the plan was to head back up to the 19th floor and again try to get in with the GI. Well, that plan failed. There were no GI's until Wednesday! And even then they told us there would only be one so our chances of being seen were slim. UGH!
I decided to go back up to the ped floor and see if the neurologist would follow up with us anyway. He agreed. He went over some of the labs and showed us a few things here and there that were abnormal but nothing drastic. Really he didn't have any answers yet and wanted us to see the hematologist and then come back after that and see him again.
We saw the hematologist and she didn't think anything was drastic, just minor anemia & she thought the B12 deficiency was because of the Dilantin(one of his seizure meds). She said the two interact and it could be causing him to become deficient. I didn't really agree but whatever, I'm not the specialist. She wants him to get a multi vitamin everyday & start getting more iron in his diet. She said some of his red blood cells are abnormal but not "real abnormal". At this point I was a bit annoyed that everything was abnormal but not drastically enough to make a big deal about!
After seeing her we saw the neurologist again. He agreed with me that the B12 probably wasn't totally caused by the Dilantin but that it may be contributing. Basically he doesn't know what's going on. He said there are a lot of things but nothing "fits". He's not ruling out a metabolic disorder and as of right now the general thinking is that there is a metabolic disorder but basically no one can tell what it is! So, we go back in 3 weeks to see the GI and we'll see the neurologist again. Hopefully by that time we'll have all the labs back and we'll get some more answers. The other big thing was his cholesterol is really high. It's 248. Which is high, but for an infant it's ridiculous. That's another thing we don't have an answer for at this point.
We decided to wait until Tuesday morning to head out so we just went back to the house and got packed up.
TUESDAY:
We left around 10am and decided to stop in Minneapolis and take the kids to the zoo. It was SUPER hot and really muggy so it was pretty miserable. We only stayed for 2 hours. The kids were tired and sick of driving so the drive home wasn't the most fun. We got in around 8:30pm last night & Jake's mom came over to see the kids. She left around 9:30 and we put the kids to bed. I'm glad to be home!!
At this point I don't really know what to think. I'm hoping the neurologist will have some answers when we go in 3 weeks. I definitely agree with them that there's a metabolic disorder somewhere. The trouble is just finding it. There are some other possibilities too but we just don't have enough information yet to know for sure.
Along the lines of a metabolic disorder is something called Mitochondrial Disease. This is a possibility as well and he does fit the profile unfortunately. Of the two, metabolic conditions are better so I'm praying if it's one or the other that it's a metabolic disorder.
Well, I'm tired. Maybe I'll write more later. As if this wasn't long enough! ;)
