A fractured brain

Brains fascinate me. Especially the brain of one particular child, Emeric. If someone granted me one wish it would be that I could get inside Emeric's head and figure out how his brain works. This kid puzzles me and puzzles all his therapists. Some of his therapists have been with him for 2 years and aren't any closer to understanding how to get through to him, how to help him understand and learn.

Emeric learns atypically. Whereas a typical child grows up and learns without much effort really from the parents Emeric does not. Emeric has to be taught. Most kids learn from watching their parents. Emeric does this too but it takes intentional, focused, and lengthy teaching for him to learn it.

Emeric's therapists might teach him how to do something or what something is for and he might do it. Once. And that's it. It's as if his brain completely erased the memory of how to do what they'd asked. Or he just doesn't see the point in doing it, who knows.

He doesn't really seem to be bothered with things like pleasing people and I feel like this hinders his ability to follow directions and to learn. A lot of children want to please you so they'll do what you do to get a reaction. Emeric does this sometimes but not often. If his therapists hand him a toy to get him to mimic what they just did he'll usually throw it. Or he'll hit them.

I realize that makes him sound like a brat and since he's nearly 3 it would seem that he should "know better" and just listen. While those things sound nice on paper they aren't true for Emeric. He doesn't think like a 3 year old and while he definitely has times where his defiance is intentional and intended for disobedience most of the time he just doesn't seem to see the connection between being asked to do something and actually doing it. The "good job's" and "way to go's" aren't as much of an incentive as they are for typical kids.

Some days Emeric's brain seems to function pretty well and other days his brain seems to have said, "See ya, I'm taking the day off!".

So, since I'm at a loss as to how to really continue helping him learn I made an appt. with a specialist in Duluth. She actually works out of a free clinic and will do a consultation for us. She specializes in Autism and Autistic like disorders and will see him in August.

In the meantime I decided to start using the PECS book I made for him a bit more and using social stories to try to get some basic understanding of things like not hitting, not throwing toys, etc. down.

Wish us luck! With his attention span(or lack of) we need all the luck we can get! :)

Sand, sun and silliness...

Per my sister's request...

Day 2 and Day 3...

(Don't worry, I won't chronicle EVERY day :) )

Day 2 I ran 3 miles. I made a bit better time but my legs were killing me.

Day 3- That's today and thank you lord it's a DAY OF REST. My feet have blisters on them from my shoes but otherwise I actually feel pretty good. If my back wasn't burning up from sunburn I'd feel even better.

Stay tuned for pictures of what we've been doing the last few days!

Day One.

I lived.

I ran 3 miles today. Took me 40 minutes.

Woot.

Camp.

I got home Saturday afternoon from camp. I counseled this year for senior high girls. We left Sunday for a staff retreat and spent the day planning our week and getting ready for campers to arrive. Campers started coming Monday around 2:00pm and for the next 5 days the running around didn't end. From 7:30am until 11:30pm our schedules were packed with chapel, small groups, sports, swimming, more chapel, more rec, etc.... It was a blast and I'm so glad I decided to go!

Surprisingly I really didn't miss my kids much which was great. I prayed about it a lot before hand that I would not miss it because I knew if I did it would make camp a lot less fun than it could've been and I didn't want that so I was glad that the week flew by.

Now I'm back home and back to the grind of Emeric's therapy, phone calls and the same old stuff.

One thing that isn't the same is I'm training to run a 1/2 marathon with my sister in law, Jill and her husband. I figure if I admit I'm going to do it that will give me the motivation to actually follow through. The thought of running 13.1 miles makes me laugh at this point but this is something I really want to do and I'm just hoping my asthma and runner's knee don't stop me.

So, if you don't see me blogging for a while it's probably because I can't move.

I *heart* Jack Handey

"I can't stand cheap people. It makes me real mad when someone says something like, "Hey, when are you going to pay me that $100 you owe me?" or "Do you have that $50 you borrowed?" Man, quit being so cheap!”

Randomness...

I want to take a road trip. Anyone want to join me? I thought about maybe renting a car and just going for a few days. Will $300 that I made garage saling cover this trip? Hmmm....

All joking aside(oh wait, I wasn't joking) I really do want to take the kids somewhere. I'd love for them to be able to see the mountains so I thought about driving out to Yellowstone but last time I was there I saw a massive snake and I can't get that picture out of my head so now I'm skeered.

How long do you think it takes to drive to New York?

Speaking of not wanting to leave for a week...

Got a letter from Emeric's doctor today in Houston. It's called an "Interdisciplinary Plan of Care" to give to his doctors, use at the ER, etc...


Allergies: NO LACTATED RINGERS

Emeric has a suspected metabolic disorder. Individuals with metabolic disorders have decreased tolerance to minor illnesses and fasting states and are prone to rapid decompensation. Any change in Emeric's condition should be taken very seriously as he can quickly become fatally ill.

Metabolic disorders are genetic diseases that result in a deficiency of metabolism. All cells need appropriate metabolism to function and metabolic disoders may involve any organ system: brain, muscle, nerve, eyes, hearing, endocrine, cardiac, hepatic, immune, renal. Symptoms become severe during ordinary infections, with exercise(exertion), with stres, or even with heat. Any of these conditions may precipitate a "metabolic crisis". During a "crisis", the patient's organ systems begin failing one at a time. A crisis can develop as slowly as over several weeks or as rapidly as over several hours and a patient with a metabolic disodrer may go from talking and walking to intubated in the ICU within a very brief period. Very few patients survive a metabolic crisis, but with early intervention and supportive care, it is possible.

Emeric's symptoms include: Epilepsy, macrocephaly, GI dysmotility, nystagmus, developmental delay, autonomic dysfunction, reflux, aspiration, dysphagia, poor temperature regulation with easy overheating, decline in neurologic status even with minor illness. so much for helping in the care of this complicated child.

My mind is real at ease now. Not that I didn't know this all before but because seeing it written down makes it more real.

It's gonna be a long two weeks...

First I have a garage sale this weekend and I'm pretty sure I'm getting sick. Jake was sick, his mom is now sick and I just feel like you feel before getting sick. Lovely.

Next week Emeric has a doctor appt, Kylie's birthday is on Friday and then I leave for a week to be a counselor at our church summer camp. I have never left my kids that long. I've only ever left Emeric overnight and the girls for a few days during out of state doctor appt's.

I am so nervous/worried to leave the kids. Mostly Emeric because he has so many medications and needs liquids thickened and can't get overheated and.... what if someone forgets? And especially now that Kaydence is on a bunch of meds too. Plus we just decreased one of Emeric's seizure meds due to side effects and what if he starts having seizures again?

Sigh.

I plan on keeping myself very busy during camp to keep my mind off it all. Or at least I'll try.

I'm opening a pharmacy...

After leaving the doctor's office yesterday with three prescriptions for Kaydence I might as well open my own pharmacy.

Kaydence saw an allergist yesterday and we spend FOUR AND A HALF hours there. He's also a pulminologist and deals with lung issues so we discussed her asthma. He wasn't thrilled that she'd had previous allergy testing done because he said the type they did is not that accurate in kids so he wasn't going to take it at face value. He also didn't seem to be fully convinced that she had asthma.

He recommended doing a chest xray, sinus xray, nasal swab, spirometry(breathing test for lung function) and scratch testing for allergies. I was completely against the scratch testing because she was so tramautized by the skin testing they did before but he said this was different and not painful so I agreed to it.

The sinus xray showed chronic sinusitis. He figures she's had a sinus infection for a very long time. He wants her on antibiotics for 6 weeks(yuck), nasal washes 2x a day and Nasonex 2x a day. He said it will likely takes 6 months for the infection to fully clear.

The spirometry showed decreased lung function and proves she has asthma. The chest xray was cloudy and indicates asthma. She needs to take Flovent through an inhalor 2x a day.

The scratch testing showed a mild reaction to dairy and peanut. They aren't sure of the accuracy of the test because even the hystamine, which is what they use for a control, didn't react very much. They want to repeat it in 6 months. For now they took some blood to see if there's a reaction to milk and peanut and he assumed they would be normal(I hope!) but we should know something next week.

I can't tell you all the thoughts that ran through my head when he gave me the results of those tests. Mostly, "Why do I have more than 1 sick kid?" "How crazy will I go giving up to 10 medications a day to 2 different kids EVERY SINGLE DAY?" and more questions along those lines.

Poor Kaydence though. She must be so miserable and probably doesn't even know what it's like to feel good. She's never complained about her sinuses which makes me think she's probably dealt with it for such a long time.

Right now insurance doesn't want to pay for the Flovent or the nasonex. The Flovent comes through an inhalor. She could also take Pulmicort but that's through a nebulizer and it's really much more time consuming to use a nebulizer 2x a day vs. just 2 quick puffs on an inhalor so I'm really hoping insurance gets over it.

I guess the positive side is that I've made a lot of new friends at the pharmacy and bettered my math skills by counting and multiplying doses!