Wednesday, January 28, 2009
Posted by Nicole at 8:45 PM
This was our new, bubble cheeked fish. I started noticing his bubbly cheeks were less bubbly and I wondered if something was up. Today, I looked in his tank and noticed his breathing was fast and labored. The nurse in me(ok, so I'm not a nurse but I like to pretend) actually wondered what his heart rate was! I am NOT joking. I wish I were because it sounds utterly ridiculous. Pity overcame me and I decided to end his suffering by flushing him down the toilet. When the girls realized he wasn't in the bowl I heard Kylie say to Kaydence, "Oh no, I think Goldie died" and Kaydence said, "Yeah, I think he died". The difference was Kylie was horribly distraught and Kaydence just shrugged her shoulders as if she cared less. When Kylie asked me I told her that yes, he died and she started bawling. She went and told Kaydence indeed he did die and Kaydence said, "Kylie, I already know." The bawling lasted for roughly .2 seconds and they haven't mentioned the fish since.
I don't think we'll be getting another fish.
Posted by Nicole at 7:14 PM
Monday, January 26, 2009
I know I devote a lot of time on this blog talking about Emeric but I guess I use this as my journal and well, I doubt most people that read this come looking for good reading material. I don't try to be entertaining or educational I just talk. Everyone that knows me knows I love to talk! :)
Everyone that's read this blog for very long also knows that I've talked about how I go through these cycles in terms of Emeric's health. Sometimes I am filled with hope and I don't talk about it every second of every day. Other days it's all I think of. I'm sure people are starting to wish the days of talking about it every second of every day would become less and less and I'm sure eventually they will but it seems like everytime something new pops up that we have to deal with I'm left back at the beginning on this road of acceptance.
But then there are times where someone says something or I read something and I am left feeling a bit more at ease with things. And it always seems to be something so insignificant to others and I wonder what's wrong with me that I could take something away from it that was so significant! I don't have a lot of depth, it doesn't take much to get through to me! :)
That happened to me tonight. I started a Bible study by Beth Moore on Esther. I recently started another study of hers on the Tabernacle and I thought about skipping this one because frankly, I didn't figure I'd keep up with the homework. But I decided to go and I'm so glad I did.
Do you know what another definition of Hope is? Aspiration. Do you know what Emeric was recently found to have? Aspiration. Can I just say that when she used the word aspiration as another definiton for hope I felt a lump in my throat. And then I thought it was such a coincidence that she used the word aspiration and obviously no one else probably thought twice about the word but to me it was like a light bulb went off in my head and I thought...hope, I can have that. And I remember what she said last year in a study I did that whenever you just really got something that's because God meant it for you. It wasn't just a coincidence. It doesn't matter if no one else got it because if you did it was FOR YOU.
So, I'm having this argument in my head wondering if God really intended me to get something or if it was just a coincidence and then she said, "Coincidences are miracles in which God remains anonymous."
At that point the arguing stopped and I accepted the fact that I got the lump in my throat because God intended it that way. He used a simple word that doesn't even mean the same thing in that context and got through to me.
The entire study is based on the book of Esther where she points out that God's name isn't mentioned once in the entire book. She mentions times where God performed miracles and it was obvious who was at work and then other times, "God works through the individual and maybe there's no bigger miracle."
Can I just say that again? Sure I can, it's my blog. hee hee...
"Sometimes God works through the individual and maybe there's no bigger miracle."
Time and time again I have told people that I really feel like God is not going to perform an obvious miracle in Emeric's life and completely heal him from this disease but that I have already seen the miracle he can perform in individual lives.
Maybe he won't heal Emeric PHYSICALLY but maybe because of him others will be healed spiritually or emotionally. Does that sound corny or ridiculous? I hope not because I really believe it. I don't believing healing always has to be physical.
The faith does not come just in believing that God can heal Emeric. It comes in believing that God does not have to heal him for me to remain faithful. God doesn't have to heal him for me to trust that there's a bigger plan. I don't always like it, or accept it, or understand it but I didn't grow up always liking things or accepting things or understanding things and yet in the end I can see how they were because those people loved me and knew what was better for me then.
Beth goes on to say, "We trust the providence without the miracle". Do I need a miracle to have faith in God? No. Do I still struggle everyday with those worries and fears and doubts? Yes.
This life isn't a mistake. It isn't Plan B. God hasn't put you on hold while he helps someone else. It's easy to blame God when things don't go our way but yet do we thank God when they do?
I don't know what other people are going through but I do know that God won't leave you. Just when I start feeling like He's given up on me and realized I'm not a very faithful follower I receive a blessing like I did tonight.
I don't for one second believe that using the word aspiration as a definition for Hope meant nothing. I've been really scared about this issue of aspirating ever since I found out about. Ever since the doctor said it will slowly cause lung damage and ever since knowing that if it gets worse there's a possibility of having to stop feeding Emeric. I woke up last night because I heard Emeric coughing and then he quit and I fell back asleep. And then I had a dream that he was hospitalized for pneumonia and he died. I guess it was more of a nightmare really. But that's how much this issue has been on my mind.
And in all of it comes the realization that God is real and He really cares for me. My failures aren't a big deal to Him. In fact Paul says we should boast in our weaknesses for when we are weak we are very strong. His power is made perfect in our weakness.
Posted by Nicole at 7:25 PM
Sunday, January 25, 2009
For some reason, my 4 year old child has gotten very.... creative/silly/weird lately. Although maybe it's not just lately. This is after all the same child that woke up after at least an hour of sleeping, stumbled into the livingroom, eyes half shut and asked, "Are you making a pizza? I smell something." You see, Kaydence is OBSESSED with pizza(cheeseless by the way because she's allergic to dairy) and she would eat it everyday despite the fact that it's mostly crust and sauce with a few slices of pepperoni here and there.
However, the random, funny things she says have become more frequent...
She's taken to proclaiming, "Holy fruit balls!" anytime she's surprised by something. Sometimes it very random and doesn't seem to pertain to being surprised by anything and yet she says it anyway. Or she'll say "You're a silly mommy noodle head" or "Cheese Macaroni!" for no apparent reason. I asked her if she thinks she'll be the class clown someday and she said, "You're a silly mommy head". Which for a 4 year old is a sufficient way to answer a question.
She's also taken to telling me she's "itchy" all the time so she needs a bath. This started because Kylie was itchy one day, from dry skin I'm assuming, so I told her to go take a bath and then we'd put lotion in. And Kylie got to take a bath in our bathtub(which is a lot bigger) so Kaydence said, "I need to take a bath in your bathtub mommy because I am SOOOOOO itchy!".
I tell her to go put lotion on and she initiates her melt down. I tell her she can take a bath in her bathtub because I don't feel like cleaning out all the wax from our bathtub that fell in the water after I grabbed it to blow it out and the wax ran down my arm so I threw it in the water, but that isn't good enough. I tell her that fine, she can take a bath but she doesn't need to lie and tell me she's itchy when she's not and she just wants a bath. She nods her head as if she understands, cocks her head to one side and says, "I love you mommy".
Am I being manipulated here? Or am I just a silly mommy noodle head?
Posted by Nicole at 9:05 PM
Friday, January 23, 2009
I just copied from his caringbridge site which seemed easier:
Our appt. with the Pulm went well. It's always nice to find a doctor you really like! He went through Emeric's history and then asked what questions we had and was very thorough.
Basically Emeric is aspirating and we found this out 2 weeks ago when we had the swallow study done. Since then we've been thickening his liquids because that was what it showed he was aspirating on was thin liquids. We've also noticed him aspirating on his reflux. The pulm said that aspiration will in time cause lung damage. He said that it's slow but it will happen. He said right now we can hopefully take care of it by thickening his liquids and giving him more easy to chew foods but if he indeed is aspirating on his reflux and starts developing pneumonia, chronic cough, wheezing, etc. than we're looking at doing a Nissen Fundo. I don't know much about this procedure but it's basically where they wrap the upper portion of the stomach around itself and that is supposed to help with reflux. If they do this they'd put a feeding tube in and he would not be allowed anything by mouth. This would only happen if the aspiration starts getting worse and he starts developing the symptoms I said above. He said it really depends on the progression of the Mitochondrial Disease If we had a prognosis and we knew things would deteriorate than they'd look more seriously at the option of surgery with the assumption that this is going to get worse, it's just a matter of time. If there's the possibility of improvement than we're fine to keep doing what we're doing. The problem is that there's really no way of knowing this.
The worry for me is that in the last couple months Emeric has started running a low grade fever nearly all the time, being more tired, and just looking like he might be getting sick. But then he doesn't. The Speech Language Pathologist asked if he ran a fever and I said he does most days and I guess this can be a sign of chronic aspiration. He said anytime the body is working to keep out infection(like pneumonia) you'll see the body temperature raise. So, all of this makes me wonder if things are slowly progressing in this area. All we can do is hope we're wrong I guess.
He referred us to a GI in Fargo and he said he would like to monitor things just to make sure things aren't getting worse. He thought it would be a good idea to consult with the GI in Fargo because if we do end up having to do the Fundo(or maybe if he has another idea) they can work together on a plan. He also hoped that we'd get some idea of a prognosis of his disease when we go to Houston in February.
So that's it for now. We'll continue to thicken all liquids and watch for any changes. It makes me sad to think we have yet another specialist we need and while I know a lot of kids with Mitochondrial Disease deal with GI issues I was hoping Emeric would always "just" deal with the mild reflux and that would be that.
Posted by Nicole at 3:38 PM
Posted by Nicole at 3:38 PM
Thursday, January 22, 2009
Today was our first day back to Bible study since Christmas and we woke up nearly 30 minutes late. It was tempting to just skip but I didn't. I woke the kids up, quickly fed them breakfast, got them dressed and we were out the door. As soon as I had a minute to actually think I realized I really didn't feel very good. I actually thought about turning around. I'm so glad I didn't though. We started another Beth Moore study called, "A woman's heart, God's dwelling place" and it's about the Tabernacle. Already I loved it! We did a study last year from Beth Moore on Daniel that was also great. I love Beth Moore! She makes something, like the Tabernacle that doesn't sound all that appealing to discuss honestly, very, very interesting and insightful. You realize how there's something to learn from everything in the Bible even if we don't think it pertains to us.
I have the opportunity to start another study by her on Esther which I would love to do but I'm not sure I'd keep up with all the homework! Not to mention it's hard to find a babysitter. We'll see though! :)
Tomorrow Emeric has an appt. in Fargo with a Pulminologist to discuss the Aspiration issues. I'm not sure our gameplan will change but we'll see. It's more to get to know someone and see if we like them so if another issue does arise we have someone. And the closer the better!
I've been thinking a lot about energy consumption in relation to Mitochondrial Disease and I've talked to quite a few people after hearing comments from people that they don't see how Emeric could possibly have a problem with making and using energy because he's typically so hyperactive!
A woman whose son also has Mitochondrial Disease told me they've been told that hyperactivity or even just general busyness can be a way to mask fatigue. It's as if they can't slow down because they'll get too tired. You know how kids are when they're overly tired and it seems like they're just bouncing off walls? Emeric has always gotten tired more quickly than other kids his age. He recently stopped taking 2 naps a day and I've noticed a big difference in his energy level. He'll be playing normally, running around like his wild man self and then I'll stop him to change his diaper. As soon as you lie him down a lot of the time he'll close his eyes and you can tell he's tired. More recently he's been stopping a lot throughout the day, asking for his "nigh nigh" and laying down.
Last week his PT was here and she hadn't seen him look so good in a long time. She said his eyes looked differently and he just looked good. And then 10 minutes later he was asking for his blanket, wanting to sit on my lap and sucking his bottle lip. Kristin his PT said, "Wow, I can't believe how tired he looks now. His eyes even look different!" In a way I was glad she could see it because sometimes I feel like I see things that other people don't but at the same time it's sad because it has gotten more noticeable.
Here's a video I took of him yesterday. He just sort of spaces out and rests and then he'll get down. I guess it's just sad to me because I've seen a noticeable difference in his energy, even just subtlely, and it always has me wondering what's in store. He's only 2 after all. I know all kids get tired and if he were just getting tired before nap time that's one thing but this is within less than an hour of waking up.
Posted by Nicole at 1:05 PM
Wednesday, January 21, 2009
Kylie: Mom, where's our fish?
Me: Um, the one that died a couple months ago?
Kylie: It died?(shocked)
Kylie: Can we get the new one now? You know, the one with puffy cheeks? Dad said we could get it once our other fish died.
Me: Yeah, probably sometime.
Kylie: (thinking for a minute) Poor Goldie.
Me: Wasn't its name Cheyenne?
Kylie: Oh yeah, it was Cheyenne. Poor Cheyenne.
So a new fish with puffy cheeks came into the family today. The kids haven't named it yet. Which is fine since I'm sure by morning it would have a new name. I think I like Cheyenne slash Goldie better though. This fish has like 20/10 vision and flips out when you walk by its bowl. The only time our other fish freaked out is if you put a mirror up to its bowl and that was because it was a fighting fish and I suppose it felt threatened.
Yes, my life has become even more boring than before! Don't forget to stay tuned!
Posted by Nicole at 7:09 PM
Tuesday, January 20, 2009
I turned on the tv this morning to watch the events of the Inauguration. There was a black man being interviewed that was 100 years old and he was crying when he tried to describe how much this meant to them, how they never thought they'd see the day when a black man was sworn in as President and what this meant for future generations. It really was awesome to see the day unfold and watch the change in power take place! I explained to the girls what was going on but neither of them seemed to really care even though they did watch parts of it. Someday though I bet they'll appreciate the fact that they watched a once in a lifetime event!
The kids have been keeping close tabs on me lately. Kylie asked me the other day why I was on the computer again, why I didn't make my bed but she had to make hers, and why I got to drink Mt. Dew and they didn't.
I thought about telling her that while daddy leaves for work mommy works from the computer. But, I didn't. :)
I did however lock myself in the bathroom to drink my next Mt. Dew.
Posted by Nicole at 11:47 AM
Monday, January 19, 2009
I've posted before about Landon, a little boy with Mitochondrial Disease. You can reach his caringbridge through a link on my blog. Anyway, here's a video of him and Dr. Koenig, the doctor we're going to see in Houston. This doctor is amazing, she actually took time off to go with the family on their Make a Wish trip to Disney World in case Landon gets sick while they're there. You'll see in the bottom right hand corner of the video that there are 15 videos. Click on the arrow to get to #7.
Posted by Nicole at 6:38 PM
There are some things I actually plan ahead for and this is one of them. The 2009 Stroll for Epilepsy is in August again this year and I'm looking for a team name! If anyone has a great idea will you let me know? Last year we were Mr. E.
Posted by Nicole at 3:16 PM
I went to see my doctor today about my swallowing problem and this is what I left with:
1. A referral to a GI
2. A piece of paper that said: No lactose, yogurt ok, antacids.
Which tells you that I should've made the appt. to the GI myself and saved a trip to my regular doctor. Basically the doctor thinks I have GERD(Gastroesophageal Reflux Disease), possibly a stricture(narrowing of the esophagus) and who knows what else. I have enough issues that she didn't want to try to deal with it.
In other news Kaydence has taken to saying, "What the heck?" over everything imagineable. It's cute and annoying at the same time. She also told Jake a few days ago, "Mom is nuts!" We both agreed we'll likely have our hands full during her teenage years!
Posted by Nicole at 1:01 PM
Saturday, January 17, 2009
Posted by Nicole at 2:11 PM
Friday, January 16, 2009
I'm ordering some bracelets from the United Mitochondrial Disease Foundation's website. They are the typical rubber bracelets you see for a lot of causes. They're green and they say, "Energy For Life". I'd post a picture but my blog is stupid and keeps stalling my computer when I try to upload a picture! If you'd like to order one let me know. They're $1.50 each unless I get quite a few people wanting one then they'd drop a bit. They're a great way to get awareness out about Mitochondrial Disease.
Most people have never heard of Mitochondrial Disease and most doctors don't even know much about it. The only way to raise money for research to one day hopefully find a cure is through awareness so if you'd be interested in getting a bracelet(or two!) leave me a comment, email me, write me on facebook, etc...
Posted by Nicole at 8:17 AM
Tuesday, January 13, 2009
Well, Emeric's endoscopy results were normal! That's great news! It looks like the reflux isn't from an allergy(which is figured was probably the case) so I'll wait to hear from the GI and then she wanted to start him on Prilosec. Yeah for ANOTHER med to give to him EVERY.SINGLE.DAY. I know I shouldn't complain because I know lots of people that give their kids way more meds than I do everyday but I do get tired of it. Especially now since he's not supposed to have liquids unless they're thickened and two of his meds are liquids.
We also found out that Emeric's muscle(from last March) was sent out for another test and I got the results of that yesterday. Of course I don't know how to interpret the results and heaven forbid the doctor actually call me and let me know! He didn't even tell me he was doing this test though so I don't expect much these days. The doctor we'll be seeing in February will interpret the results but it might be a while before she gets back to me.
In keeping with other anti-climatic news... I ended up getting in a lengthy discussion with the OT who did Emeric's swallow study. Somehow we got to talking and I mentioned I have a swallowing problem myself. I told her I've had it for as long as I can remember but I had a swallow study done when I was younger that was normal and my mom told me it was probably in my head(no mom, it was in my throat :) ) so I never did much about it. I got to talking with my dad one time and he mentioned he has a swallowing issue too and it sounded VERY familiar. Anyway, it turns out this OT thinks I have acid reflux and she said if I got on medication it would probably take care of it!!! What? No more running quickly and not so discreetly to the bathroom to make myself throw up before I soon can't breathe? I've actually taught myself how to eat to keep it from getting bad but sometimes it still happens and it's more than annoying.
So... since we haven't been to the doctor in 3 days I figured I might as well make myself an appt. Plus, maybe it would make Emeric feel better to have a drug partner! :)
Well, I'm off to warm my fingers. I'm seriously considering buying a small heater to set on my computer desk because my fingers get so cold holding them on the keyboard. LOL Although, when it's -30 outside nothing really helps.
Posted by Nicole at 7:52 PM
Posted by Nicole at 9:37 AM
Saturday, January 10, 2009
We finally made it home today!! We detoured to spend the night with Jake last night since he was gone working.
I guess I left off on my last post before seeing GI. We met with the GI, Dr. Tung(which Kylie thought was a great name! :) ) on Thursday. She wasn't hugely concerned about the swallow study results but said yes, for safety he should have his liquids thickened. He does have Dysphagia which just means difficulty swallowing but hey, I guess when you have a long list of diagnoses you might as well make it impressive. She also suspects he has Delayed Gastric Emptying which is basically what it sounds like, his stomach doesn't empty as fast as it should which would explain why he's spitting up food 4-5 hours after he eats. They can do a scan to see if he has that or just trial the med, which is erythromycin but of course the med can cause more seizures so ugh, I don't know that we'll do anything right now. I have to talk to her on Monday so we'll probably decide what to do for sure then.
He also obviously has reflux and she is going to put him on Prilosec but wanted to do a scope first because sometimes reflux is caused by allergies and this scope can indicate if the reflux is caused by an allergy and it if is then we could possibly remove the allergen and take care of the reflux. Not likely but possible... His scope went fine and the surgeon said it looked pretty good. He said there's an area in the lower esophagus that might show something but he'd wait to see what the biopsy's of the area showed and assumed it would turn out to be nothing.
The GI said to continue to offer him food first but if he won't eat to give him the Pediasure. It isn't just normal toddler pickiness and there's a reason(or a million) as to why he has a less than stellar appetite. Some days he does pretty well and other days he eats basically nothing. It could be the Topamax, which can cause weight loss, and she thought we could possibly switch but it's been the only med to give us some seizure control. It could be the DGE(delayed gastric emptying) which keeps his stomach full longer so he doesn't feel hungry, it could be the swallowing issues are annoying him enough not to want to eat, or..... your guess is as good as mine. He has gained weight though so the Pediasure is a good thing. If he quits drinking the Pediasure that would mean a feeding tube but thankfully I don't ever see that happening because he LOVES the Pediasure and would drink as many a day as I would let him. He stashes them around the house and you'll be sitting in the chair watching tv and he'll whip one out that he had hidden in the magazine rack and say, "Want ju!!!!" over and over again until someone(usually dad) gives in! ;)
I forgot to mention that I talked to the Epileptologist because Emeric's skin has been mottled and sort of purplish/blue at times and a lot of times his face is really hot and flushed. He said it could easily be Autonomic Dysfunction but unless it's severe he'd rather not try to treat it because he said it's a huge balancing act and a hard one. It would also explain his heat and cold intolerances and possibly his sometimes wacky blood sugars.
Tonight now I changed Emeric's diaper before bed and his stool had blood in it. It was really noticeable and I've never seen blood in his stool so it surprised me. I'm waiting on a call back from Mayo GI. Hopefully it's nothing but it was bright red so it's obviously fresh!
Well, sorry for such a long update!
Posted by Nicole at 6:20 PM
Wednesday, January 7, 2009
I've got just a minute here before Emeric gets tired of Kylie pushing him around in his stroller but thought I'd update quickly about what we've found out so far. We're still in Rochester and have one more appt. tomorrow. So far we've had a 24 hour VEEG and a swallow study. The VEEG shows that Emeric is actually likely having complex partial seizures that quickly generalize. It's still hard to say because the one seizure he did have was brief(1 sec) and so the Epileptologist said it's pretty hard to gather a lot of information from that but he will look over the EEG in its entirety and send us a report. For now we upped his meds and I'll update more later.
The swallow study today showed Emeric is aspirating, at least liquids. We've gotten a few suggestions on what to do about this but I'll wait until his appt. tomorrow to see if the GI changes or adds to those suggestions before I write more.
Thanks for keeping us in your prayers!
Posted by Nicole at 4:59 PM
Sunday, January 4, 2009
When I wrote that last post I initially had it titled, "Days of our lives" which then the first paragraph made sense. Then I changed the title to "My Days are Numbered" and obviously the first paragraph then does NOT make sense but I never noticed until now. LOL
Anyway, it's SUPER cold here and it's getting old! This is the coldest year I remember in a long time!
We're leaving in the morning for Emeric's admission and VEEG and then heading to Mayo on Wednesday for a swallow study and Thursday an appt. with the GI. Maybe it will be warmer a bit further south?
Posted by Nicole at 11:42 AM