Lots of news around here in the last two days. We saw an Epileptologist yesterday that gave us some new news and also received a report from a records consult we had done with a doctor in Houston who specializes in Metabolic disorders. We sent records to her in June and you don't see her but she looks over the records and gives you her opinion based on what she knows of him. We didn't tell any of our family that we were doing this because we were afraid they'd say, "You're consulting with ANOTHER doctor?" and we didn't think they'd understand. We sent our records to her back in June when Emeric was having a lot of seizures and our neurologist in Fargo and the neurologist in Cleveland could not, or would not help. Our neurologist in Fargo is primarily for management of meds and admittingly doesn't know a lot about metabolic disorders. Our neurologist in Cleveland is good but he sort of gave up after Emeric's biopsy came back normal and said he didn't really know what else to do. So, we heard of this great doctor in Houston who was actually on Good Morning America a while back because she is THAT good. :) She does records consults and this was perfect for us. We really believed in our hearts that something was wrong and even the neurologists agreed something was wrong but they couldn't find it. It wasn't like we were looking for something that wasn't there. We knew something was there and it would just take the right set of eyes. I know lots of parents whose kids have metabolic disorders who have seen upwards of 8 neurologists so I didn't feel crazy just yet! :)

Now, having said all that... Starting with the Epileptologist we saw yesterday he said Emeric's EEG from that morning looked much better than the previous one we had done in Fargo. This is because his seizures have been very well controlled. He said Emeric has Atypical Absence seizures. We've never really known(because no one has told us) what type of seizures he's had although I've made my guesses based on what I know but he said the description of his seizures and his EEG pattern show Atypical Absence seizures. Typically children with Atypical Absence seizures have developmental delays and mental retardation. They also do not typically outgrow their seizures. Honestly I already knew because of his EEG(which shows slowing and slow spike and waves) that this was a poorer prognosis than a child with a normal background and regular spike wave patterns. Mostly this is something I don't allow myself to think about too often.

This doctor believes that if Emeric does start having seizures again that he would be a good candidate for the Ketogenic diet. (If you click on those words you can read about that if you want.) He said there are also lots of other med options still.

Now, for the doctor in Houston... It turns out his muscle biopsy actually was not normal. It wasn't diagnostic in and of itself but it wasn't normal. She said he does have Mitochondrial Disease. She said that while his history strongly supports a diagnosis of a Primary Mitochondrial Disease his muscle biopsy does not so they believe it's a secondary disorder. What they don't know is what the Primary disorder is then. They've been looking for the primary disorder for a long time and nothing has ever panned out. She has some ideas about what to test for in terms of looking for the primary disorder and so does the Epileptologist(who also believes it is Mitochondrial Disease) and those are blood tests that can be done at the same time his seizure med levels need to be drawn. That way we can eliminate and uneccesary blood draws.

We have tests pending with Gillette Children's Hospital that the neuro-developmental pediatrician ordered and we'll do these tests but honestly I think we'll probably never have an answer. And, at least we know we've ruled out all treatable conditions so I guess we can rest a bit easier knowing we aren't missing a potentially treatable condition.

It's funny because we've heard the words Mitochondrial Disease thrown around a lot but no one has ever been able to agree and so when they finally say, yes, this is Mitochondrial Disease it feels weird. Mostly because I've known for so long that this was probably what it was but also because there was always that hope that maybe the primary condition could possibly be treatable. Instead now we have the symptoms of mitochondrial dysfunction on top of the symptoms of whatever the primary condition are.

I know that's all confusing. Believe me, I know! :) For now we know he has Mitochondrial Disease and that helps in knowing exactly how to treat him and what to watch out for. Right now we can continue seeing the Epileptologist and he's willing to work with us regarding the seizures but in terms of the Mitochondrial issues I'm not sure who we'll work with. Possibly the doctor in Houston but that's a far drive.

So, if you wouldn't mind saying a prayer for us we'd appreciate it!

School work, pesty brother, crabby sisters...

Sore throats, appt's and pumpkin carving...

I have been sick all week. Sunday on my way home from scrapbooking I had a sore throat and it hasn't gone away yet! A couple days ago it was better and now it's hurting pretty bad again. I also got Impetigo from a little scratch on my nose so that's been lovely dealing with all week. Impetigo is strep so I'm thinking I have strep throat. I have antibiotics but I still never took them other than my salve for my nose because my throat was getting better. I keep waiting it out but it's been a week now so I think we're past the point of it getting better on it's own.

We've got a busy week. Monday I have an appt. in Fargo and then Tuesday night we're heading to the cities for Emeric's appt. with the Epileptologist and an EEG. Then Friday is Halloween so we plan to take the kids trick or treating. I hope it isn't too cold!

We carved pumpkins tonight so here are some pictures. We found some templates online and let the kids pick one out and "tried" to carve it in such a way as to someone resemble the picture! See if you can guess what they are! :)

*Jake wanted to know what happened to "the good ole days" when people just carved a nose, eyes and a mouth. Seeing as he had never carved a pumpkin in his life until we had kids I don't think he knows what the "good ole days" were!

I love new babies!

My brother in law Jared's baby was born tonight. He's sooooo tiny and I wanted to put him inside my coat and take him home.

I doubt they'd mind.

Weekend Pics...

My sister

(Disclaimer: She might kill me if I don't mention that she didn't intend for her hair to be this color and she's since dyed it mostly dark brown and it looks great. :D)

See, proof of the hair dying... I wish I had an after picture.

Me and Ang Lesley and I
Jocelyn
Katie






We spent most of the day out of the house on Saturday and had Lesley's camera so most of our pictures are on her camera. Once I get them I might share. Maybe... :)

Not Me Monday

This weekend I did not spend most of my money shopping instead of scrapbooking things.

I did not sing karaoke so much that I nearly lost my voice and 2 days later my throat still hurts. Granted I'm also sick so that might be playing a part...

I did not participate in making a bon fire out of the flower bed in the backyard of the retreat.

I did not not miss my kids the entire weekend. Definitely not. That would be terrible to be having too much fun to miss them...

I did not come home, say hello and then proceed to sleep and lie deliriously on the couch for the rest of the evening and into the morning because I was so sick. Thankfully I'm feeling better today although my ear and throat are still hurting a lot!

I did not pay $15 for a video from the doctor we saw in Cleveland just to hear what he had to say at the Mitochondrial Disease Symposium this summer. And then I did not regret it at all even though everything he said was most of what he'd already told me on the phone in regards to Mitochondrial Disease. I also did not put it on my debit card instead of using my scrapbooking money because I really, really wanted the video and I'm impulsive.

It's a good thing I didn't do any of those things this weekend because I'd probably be feeling really guilty.

Or not.

My hiatus...

I'm leaving in the morning to go scrapbooking with a bunch of friends(2o to be exact) for the weekend. My "no buying" is officially over until Sunday. Well, at least until I spend the money I've saved up! :) I'm heading in with my list which consists of:

1. Ear plugs
2. Advil PM
3. Energy Drinks
4. Batteries
5. Junk food

I plan on getting no sleep, needing a lot of Tylenol, and feeling sick most of the weekend from all the sugar. Sounds fun huh?

Have a great weekend everyone!

By Your Side - Tenth Avenue North

My online friends...

I love all the people I've "met" online in the last year. Especially people whose kids have Special Needs. Today someone asked if once you have a kid with challenges if you always cry at the drop of a hat from then on! LOL Every single person said YES! I love being able to relate with people that way and not be thought of as crazy! I choke up over very trivial things daily, I cry way more than I ever used to and over seemingly nothing. Everyone talked about how you're just more aware of the challenges a lot of parents face and there is a special bond there that you don't have with just anyone. I know for me I've realized not to take things for granted. When you have kids you just expect certain things to happen and when they don't happen, or at least take a long time to happen, they become much more important.


Some of the things that I've either cried about or gotten choked up about in the last week:

1. A commercial of a little baby laughing hysterically and then falling over from laughing so hard.
2. My friend's little boy, who is over a year younger than Emeric saying "hi" to me.
3. At least every 3rd song on the radio.
4. Talking to my friend Angie about her niece's death.
5. Thinking about my SIL buying underwear for my nephew.
6. Hearing of a couple who are trying to get answers for their sick daughter and having no luck.
7. Watching Emeric give me "the look" after I've told him no and then either turn around and do it anyway or wilt to the ground from a broken heart.
8. Reading about the "inchstones" that kids with special needs have reached recently.

Some are serious, some are silly, some are reminders of the milestones Emeric hasn't reached yet. Things become much more meaningful when you read lists of what parents are thrilled that their kids have learned to do in the last month. Here's just a short list:

"He is starting to have the strength in his arms to push up a little." (This little boy is almost 2)

"She moved her feet in her stander today!" ( This little girl is 5)

"My baby can sit herself up!" (This little girl just turned 3)

"He'll lean his face close to me so I can give him a kiss!" (This is a little boy whose mother was told he had such severe brain damage he'd never understand them.)

"He stood all by himself for 3 minutes!" (This little boy is almost 5)


Those are HUGE accomplishments to those parents! I watched the video of the little girl who moved her feet in her stander and I cried. She moved probably just a few inches but her mom was thrilled and the excitement in her voice was so touching! These are all examples of kids with physical delays and that's a bit easier sometimes to see milestones being met but for lots of parents getting their kids to use a spoon is a huge victory!

I feel so blessed that Emeric is not severely physically delayed like these children and I'm reminded often of how truly healthy he is. And other times, like a few I posted above, I realize how as he gets older his delays are more obvious and other kids notice things and I start feeling really bad for him.

A friend of mine said her 2 year old little boy prayed the other night and included Emeric in his prayers and asked God that he would feel better. Ha! I'm going to tear up again just writing it! LOL Isn't that sweet? And yet it's a reminder to me that kids notice his differences.

What's so interesting to me is that the parents whose kids struggle to even sit at 5 years old are much more thankful and touched by what their kids can do than parents whose kids have always met every milestone they were expected to meet.

I found this poem and wanted to share it with you. It would help first if you read this because there are some parts of the poem you might not understand otherwise. There is a lot here I don't relate with. Things like feeding tubes and heart surgeries and chemotherapy. But there are many things I do relate to.

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, butI've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are wellworn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled withyour very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority.A very elite sorority. We are special. Just like anyother sorority, we were chosen to be members. Some of us were invited to join immediately, some not formonths or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers ofchildren with special needs.

We are united, we sisters, regardless of the diversityof our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as"special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know"the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and schoolboards to get what our children need to survive, andto flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax andsip red wine in Italy. We've mourned the fact that ourtrip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Oh, and on a completely different note... That infection in Emeric's finger? Yeah, it's still not healed. And now he has the infection in another finger. I'm really convinced now that he has the strep infection that was going on a while back around here. Way too coincidental that he got the infection in both cuts on different hands. And they look the same. The other hand now the skin is starting to slough off as well and looks the same. And, can you believe I have it too! Yes, I have two sores UP MY NOSE! I am not kidding! And they HURT and they are not healing! So, I'm assuming I'm going to have to take Emeric back in and get more antibiotics which sucks and I'm probably going to need them too!

Pictures...

Here's a really poor quality picture of our Epilepsy Stroll Team. They sent me a picture and since I don't have a scanner I had to take a picture of the picture!


School at home = staying in your pajamas all day and using a ball as your chair! Oh, and making the letter E out of noodles! :)





I painted our bedroom last week... It doesn't look quite so vibrant in real life. The lighting was bad and well my picture taking skills are bad too. So, it'll have to do!

At Awana's on Wednesday the kids were supposed to dress up like what they wanted to be when they grew up. Kylie wanted to be a doctor but we didn't have much doctor stuff so she was a nurse instead. :)

A couple pictures of Emeric yesterday at his MRI.

I'm also fiddling with my layout and trying to re-aarange things so everything is a bit messed up on my blog right now. Hopefully I'll get it fixed soon.

Long day...

The MRI went well today. We had to be up early and Emeric was in a good mood. They numbed his hand before starting an IV so thankfully he didn't feel too much but they had to try twice to get it in and he wasn't happy. They then sedated him and he fell asleep but as soon as they got him down and into the MRI he woke up so they had to give him another dose. So, with a double dose of oral sedation he was pretty knocked out. He slept for quite a while and then when he got up he couldn't walk, couldn't crawl, and could barely sit up. Thankfully he went back to sleep for another few hours and when he got up he was much better. We won't have any results until next week but I'm praying his MRI is still normal.

The girls stayed at my sister in law Kerry's house last night and they had a lot of fun. They got to have a slumber party, watch movies, and eat popcorn. They stayed up really late so by this evening they were less than charming. Thankfully we put them to bed and I haven't heard a peep!

Well, off to eat a pumpkin bar and then head to bed!

Non-Wordless Wednesday

Did anyone watch the Presidential debate last night? I did, but only because Todd Smith, the guy from Selah was sitting in the front row! :) I read his wife's blog and she told everyone he'd be there, in a green shirt, so I was watching and there he was! :) I guess she said Obama came up to him afterwards and asked him what he did for a living and he told him and Todd said he would send Obama a cd. :)

I'm always so skeptical in watching these debates because I just don't trust what either candidate has to say. I try to figure out the truth on my own but it's hard sometimes. There is a very brilliant woman I know who always knows what's going on and she fills me in when I get lost! LOL There was an online debate I was reading where people were talking about who Jesus would likely vote for if he were here on earth. Kind of funny to read everyone's responses. The democrats were saying that he'd be in favor of Obama because he was all for giving to the poor but the Republicans came back with the fact that Jesus wouldn't favor abortion. Abortion is the biggest issue I have with Obama. It's an issue I cannot compromise. I don't really care what's at stake. Not saying I don't also love poor people! Heck, if I said that I wouldn't love myself. LOL

Speaking of finances... I spent money today! Oops. In my defense the money was spent on a pound of hamburger and sour cream. I consider them both parishable food items though so technically they don't count! See, with all that corn I froze I have absolutely no room in my freezer so I have to use hamburger as I buy it and keep it in the fridge, therefore techincally making it parishable(How the heck do you spell that word? It looks wrong!)

Oh, and isn't this the cutest picture you've ever seen? Emeric climbs up and always crosses his legs like daddy! (Don't mind Jake's dirty work clothes!)

Finger Update

We ended up taking Emeric in tonight and his finger was indeed infected. It actually looked better tonight but the doctor did say it looks deeply infected. Hopefully the antibiotics will clear it up!

Another MRI

Emeric will be having an MRI on Friday. I called to let him neurologist know what the eye doctor said because she likes to be kept up to date on what's going on and I mentioned that his MRI is scheduled for December or January and wanted to make sure it was ok to wait that long. She said no that she'd like it done sooner and they can get us in on Friday. I have to take him in on Thursday for a pre-op since he'll be sedated.

I'm throwing around the idea of taking him in today for his finger. It still isn't healed and if it IS infected and I get him on antibiotics today he'd be fine by Friday but if I wait until our Thursday appt. and it's infected they'll cancel the MRI. Basically his finger isn't getting worse or better. He's been running a low grade temp. most of the week though.

Fall/Winter always seems to bring on a ridiculous amount of doctor visits!


I've been thinking a lot lately about trials. Mostly about my friend Lesley and the loss of her little girl but also my sister who had a miscarriage, friends that are going through a hard time, or Emeric's situation. It's so easy I think to feel like we've done something "wrong" to deserve this or that maybe God is punishing us. I read a book a while back and the other said something that has stuck with me:

"If God allowed you to be thrown into pit,

you weren't picked on; you were picked out.

God entrusted that suffering to you because He has faith in you.

Live up to it.

All the way up."

What a different perspective huh?

Nystagmus

Emeric had an appt. today with the optometrist to discuss some stuff that's been going on. In the last year we've noticed an upward gaze a lot. His therapists have all mentioned that something seems funny with his eyes and recommended we see someone for it.

Wouldn't you know I have a picture!?! :)

Anyway, he has something called Nystagmus. The Optometrist wants him to see a specialist and also have an MRI. I told him we already had one planned for December and he said that was good. He said basically worst case is that it might be caused by a brain stem tumor or some kind of brain lesion but suspects it's probably due to just having brain dysfunction in general. There's nothing to do for it.

Unfortunately, it's just another reminder of the "progressive" part of having a progressive brain disease. I won't get into all the "what if's" and discuss what all of this COULD mean because until he has an MRI we wouldn't really know much of anything anyway. And because worry doesn't do anyone any good. Easier said than done but hey, like Dr. Phil says, "you can't change what you won't acknowledge".

"I waited patiently for the Lord to help me,

and he turned to me and heard my cry,

He lifted me out of the pit of despair,

out of the mud and the mire.

He set my feet on solid ground

and steadied me as I walked along. "

Psalm 40:1-2

"Some luck lies in not getting what you thought you wanted

but getting what you have,

which once you have got it you may be smart enough to see

it is what you would have wanted had you known."

Garrison Keillor

Poor Emeric...

About a week ago Emeric shaved the skin off his finger with my razor. It looked like it was healing and had scabbed over and then this morning I noticed it looked like the skin was peeling and there was a hole in the middle of it. It's gotten a bit worse looking throughout the day and he won't use it. He has been really crabby and I know it's hurting him. :( I think it's getting infected because I can't quite figure out why the hole is there. It wasn't any kind of puncture wound.

Just a few things Kylie has told me this week:

1. A baby is born when the doctor shoots a hole in the mom's tummy.

2. That I should get a job so we have more money.

3. That we should shoot a deer so we make sure we have enough meat.

4. That nothing is fun, everything is boring, and all there is to do is play.

And a few things Kaydence has said:

1. That she could just LIKE watch a movie in her room or LIKE in the livingroom.

2. At the DMV standing in line with Jake: "Daddy, babies come out where you go potty!"

3. When she grows up she's going to live with grandma.

4. "Don't tell me what to do Kylie! I'm not your friend anymore!"

And last but not least, Emeric:

1. Da

2. Na

3. Ag u tha bu thu da ba sna (not sure what this means)

----------------------------------------------------------------------------------------

Gretta

I wanted to ask everyone to please keep continue my friend Lesley in your prayers. Also her husband Matt. If you don't remember their daughter, Gretta, was killed nearly a month ago already. Here's a link to her funeral service for anyone that would like to see it. If you aren't able to watch it all please watch through the first part where Lesley gives her testimony. It is very powerful and Lesley's courage & faith in God are remarkable.

http://grandgrace.org/remembering-gretta-wyman

Here also is a link to a news clip that was done on Gretta's death and child safety:

http://www.myfoxtwincities.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7517820&version=1&locale=EN-US