But Mom!

The boys went to the pool today with one of the girls that babysit for me. After I dropped her off, Matthew was arguing with me as to whether or not he could go in to the grocery store by himself and get 5 things. I told him no because as most of those that know Matthew...it takes him 15 minutes to put his shoes on...and that's with me tying them!!

I told him that I would go in with him and he kept arguing. So I said...Matthew if you keep arguing with me you won't get to go in the grocery store.

His reply...If you'd let me go in the grocery store by myself we wouldn't be.

He is way to wise for his age!! :)

And He's ...WALKING!!!!

I am writing this as I sit in the kitchen and watch Christopher attempt to walk across the kitchen holding a wooden spoon in one hand and a giant potato in his mouth!!! He doesn't get but maybe about 4 steps, but when he's not working on becoming the next Iron Chef or Lay's potato chip man...he can make it 4 or 5 feet at a time!!!

Not very far, but we are getting there! Anytime he wants to get some place far he has to crawl, but he'll catch on...he's still working on his balance. The other funny is that any time he stands up...he says...up! One of his 2 words! :)

I wondered if this wouldn't happen after he got his seizure med increased. I can't wait to get to omaha for PT tomorrow to show Stacy what we are doing! :) The boys keep running to me yelling...He's walking...He's walking and with a smile I get to say...get used to it boys...it's gonna keep happening! :) We have a ways to go...but hey...it's steps! :)

I talked to Denver again on Monday, actually talked with our provider out there. It's been the 6th time I've talked with them...SUPER impressed. They said that he can't do his VitalStim therapy which is the therapy he was doing for his swallowing 3 days/week in Omaha. Slightly disappointed, but we will see what his swallow study says next week and then go from there.

I asked about his EEG that was done in March and they said that although it was abnormal, it was only MILDLY abnormal...I'll take it! She said that it was more indicative of a child that was delayed. It gives me hope that we will grow out of this. Hopefully we hear back from genetics soon and hear about our sotos syndrome results.

But with that, I asked why we see so many outwardly signs then. Chelsea went on to explain that it takes months, sometimes years for people to catch a seizure on an EEG. (Not hoping for the years!) She said if he's not having seizures...we aren't going to catch em. So when we go back in July they will most likely stop his medication or decrease it to see if they can capture a seizure.

They will do some lab when he's out there and I'm not looking forward to the poke. Next week we head to Omaha for our swallow study. I am very hopeful that we will get our NG out, but as I told my aunt today...I will be heartbroken if we don't. I will get over it, but he's wanting a cup so bad!!!

I have added a link below, as well as on my FB page the link to our epilepsy walk page and hope that you can make some donation for the LIFE organization. Thanks SO much in advance.

https://sites.google.com/site/moosetracks4epilepsy/

General Delay

Since Denver, there has been one thing that has stuck with me...general delay. It's been hard for me to accept this and this is a very selfish mom moment, but as I watch my 9 month old neice learn to walk...my heart breaks.

We errupt in joyous outbursts when he takes a couple of steps. At any point he can just take off walking...but he doesn't. They have always said that one day he WILL walk, we just don't know when. I'm just not a very patient person. His PT says that his coordination will come when his seizures are under control.

I'm learning to dislike epilepsy a lot. I know that there are thousands of children that are worse off than Chris...even in the realm of epilepsy, but this mother just wants her son to be 'normal' and walking and doing everything he should be doing at almost 18 months. It's hard because I am helpless. I can't do anything for him, but snuggle him and love him and provide the best care for him.

So, technically, I'm not doing nothing and Chris is making improvements, but it's still hard to swallow. My evening prayers will just continue to pray for a cure.

Epilepsy Walk

I forgot to add on my last post that the Nebraska Epilepsy Walk is in August in Omaha and we will be participating. If anyone would like to join our team or make a donation to our team for epilepsy research, let me know.

I will be posting a donation link later. Any amount is greatly appreciated. Our team name is Moose Tracks 4 Epilepsy: Crusading for a Cure for Chris.

We'd love any walkers to join us!!! :) Just email me: jkoehlmoos@gmail.com

Denver

Wow, I can't believe that it's been since surgery since I last posted. Okay, I can because it's been crazy busy. I've been working lots.

Our 2 weeks home since Omaha have been busy and filled with some excitement. Chris has taken to the seizure meds well and after the first week started to take a few steps independently. Not many and when he doesn't want to do it he goes completely limp. The other night he was ping ponging back and forth in between the couch and rocking chair. SUPER excited. I can't wait for his PT to see him on the 22nd.

His NG feedings continue to go well. He leaves it alone and we've only had to put it back in once since we've been home...SUCCESS! :) We hope to get that out on June 21. We shall see. Some days I have hope and other days I don't. We did cheat a little bit the other night and I let him wet his finger and put it in his mouth. His eyes pretty much rolled in the back of his head with having something wet in his mouth again.

So Denver...I hadn't slept much in preparation for it and had just as much anxiety not being around the big boys. The last time I left them for a couple days it was 8 days later before I was home with them again.

We left on Sunday and made it out okay. Thank goodness for our GPS and my co-worker Stefani or we would have been clueless. Our appointment was at 12:45 and around 11 a.m. I started having anxiety as to whether they gave me the appointment in my time or theirs. They said when we made the appointment that if we were 15 min late, we would have to reschedule. Jason didn't help...he fed in to my psychosis by saying...you're right...it probably was our time and as I'm getting ready...i was having chest pain at the thought...however, we arrived on time! :)

We met with Kristie Stilley, a PA and at first I was worried that we were only seeing a PA, but she was AMAZING. Now, I don't mean ONLY a PA, but my thought was...I don't want to drive 8 hours to have to come back to see the other guy. Anyway, we went over the same questions we have been over 1000 times and new ones that I never thought to notice, like if one side was affected more or not.

I learned he is having 2 types of seizures...drop seizures, where he loses his muscle tone and falls (the kind that triggered all of this) and the absence seizures where he just stares blankly into space for a few seconds. The good news is she said the drop seizures usually do not indicate any type of brain injury...YAY good news.

Then she asked about his history and family history and was looking confused the whole time and I was annoyed at first until she explained that there is no reason in his history for him to be having seizures. He didn't have a horribly traumatic birth (maybe for me) and there is no HUGE family history of seizures, just my aunt. So she said the FIRST step was that we needed to find out WHY he was having seizures. Something we hadn't heard yet. If we find out why and what kind they will know the proper way to treat him.

Then she talked about doing a 3 day EEG where they will admit him to the hospital and then monitor him with an EEG "hoping" to catch a seizure. This statement alone made me feel better for the fact that they can be missed. He will do good for days and days and then will have days where he has lots. I think in Omaha, we were having good days, hence the normal EEG. She was going to try to arrange to do it while we were out there, but couldn't, so we have to go back at the end of July. The good thing about doing it in Denver is that the epileptologist will be close by also watching it...or whatever they do.

She also upped his medications because I had said he did amazing the first week on the new med and then has been going backwards a little. So she upped it and hoping to find more of a dose that works for him, since his dose now is pretty small. She also prescribed an emergency med, which she was shocked we hadn't had yet. This made me feel better. I know we hadn't had a BAD seizure, but like she said...doesn't mean he won't. The funny part is that it is given rectally and after they gave us instruction on how to use it and we walked out Jason goes...That drug goes where?

She then said that they want to talk to our geneticist about some seizure specific genetic testing that may tell us a lot if we don't have other answers from the testing we've already done. I didn't even know this was an option.

I gave her his MRI and his first EEG, but she was unable to open them up so she said that she would call this week or next with what she found out. Then we talked about not being able to get the one from Children's and she said she would work on it! :)

The last thing she shared was to call her if he had any seizures out of his norm or if anything changed that I was concerned about. Something else we hadn't heard yet.

By the time we were done with our 2 hour appointment, we had seen Kristie, another neurologist and they had consulted with the epileptologist. For the first time since his diagnosis, I feel like we are going somewhere. Before I felt like it was...here take this pill...here take more of this pill...here take this new pill. We weren't getting anywhere.

We will ravel to Denver the end of July for the EEG and I was nervous that he would have to be hooked up for 3 days because when we did the 24 hour one, he had to stay in his crib basically. Thankfully however, he will be able to move about a room in Denver.

So we headed to Omaha today to get the big boys. Jason wanted to take them to the zoo. Plus Andrew turns 8 on Saturday and we are SO happy we get to spend the day with him. We celebrated last weekend, but it's still not the same. We will head back home Thursday and get stuff done around the house before we head back to Omaha in 2 weeks.

Christopher was SO excited to see the big boys tonight. He followed them EVERYWHERE...even to the shower. Then when we were putting them to bed tonight we had the big boys in their bed and Chris in the crib. Chris refused to sleep in the crib, but the minute I put him in the bed between the big boys, he was out! After he had been out long enough though...I moved him to the crib.

Thanks for all the support and well wishes. I ask for prayers for a little girl who is 4 that will head to Denver at the end of the month for seizures. She has status epilepticus which can be life threatening and her seizures are not well controlled. She needs lots of prayers, as well as her family, that they can find something to help her.