2009... Looking back

What happened this year?

1. Jake got a new job working as a fuel truck driver in April. This was a VERY welcome change as we did not feel like truck driving was good for our family. Of course you do what you have to do at the time but we were very grateful when a job opportunity came up and Jake was hired! He now works a set amount of hours a week, we know when he's getting paid, and he's home every night for dinner. I couldn't ask for anything better!

2. I counseled at our church's summer camp in June for a week! It was the first time I had ever left my kids that long and surprisingly I did really well! I made a point to be very present at camp and to try to just enjoy myself. I knew the week wouldn't be any fun for me if I focused on missing my kids so I didn't and it was a great week! I stretched myself in a lot of ways and I enjoyed all the girls in my cabin as well as all the other kids at camp! I heard so many stories from the campers that were heartbreaking. Stories of abuse, drugs, alcohol, pornography, broken families, etc... Teenagers continue to be faced with all of these things at a much higher rate than I think even I was 10 years ago! And definitely at a much younger age!

3. I directed VBS! This is something I would never have thought I wanted to do or could do, as I'm the epitome of disorganized, but i did it! I had help from my great friend Karri and another lady at our church and together we pulled it off! It was a great week and I really enjoyed it!

4. Kylie turned 6, Emeric turned 3, Kaydence turned 5!

5. Kylie started 1st grade at public school. Over the summer I really struggled a lot with whether or not to homeschool Kylie again. In the end we decided to send her and she's doing great!

6. We made 2 trips to Houston, TX to see Emeric's Mitochondrial Disease specialist. He was officially diagnosed with a Primary Mitochondrial Disease. He was started on a new medication for seizures, he was diagnosed with migraines, and started school! He goes 2 days a week for 2 hours to a special ed class and receives all of his therapy right at school! He does still receive private OT and private speech therapy as well which his nurse takes him to on Monday's.

7. I set a goal at the beginning of the year to start exercising and I ended up running my first 1/2 marathon(13.1 miles!) this fall! It was such an accomplishment and I plan on running another one in 2010!

8. We finished our entire basement so that Jake's sister(who is going to college nearby to finish college) and her husband could live in it for 2 years!

9. I went to a Beth Moore conference!

I must live a pretty boring life to only have 9 things to list! Ha ha!

Oh well, I guess it was 2009. Maybe next year I'll have 10 things!

Wordless Wednesday: Longing for summer already!

Update on Emeric...

Again I know some of you follow Emeric's caringbridge but some don't and I haven't written about how Emeric's health has been in a while. At least I don't remember doing so...???

Emeric has been doing well. He was sick the weekend before Christmas throwing up(we all were!) and then ended up with a pretty bad migraine the next day. He laid on the chair all day moaning and crying any time he moved. It lasted for about 12 hours and then he went to bed and woke up much better the next day. He still was unable to walk and even had a hard time crawling but throughout the day and the next day he was back to himself! I wish I had a good explanation the cycle of sickness = migraine = not walking. It's strange because he really wasn't that sick but illness always affects him in weird ways!


Seizure wise he has been doing very well! We haven't seen a seizure in about a month which is great because we lowered his meds and expected to see some. It's great if we can keep the meds lower! They won't continue to lower them even though we're not seeing seizures because his last EEG showed a lot of activity which means that if he were not on the meds he would likely be having a lot of seizures. They want to "clean up" the EEG, meaning they want the meds to make all of that activity go away too because with all that noise in the brain it's harder to develop normally.

And speaking of development... this is always a sore spot for me. It's a hard balance because on one hand he's not that behind and on the other hand he is. Make sense? I mean, there are always kids I can compare Emeric to that are much more delayed and that helps me stay positive and be thankful that he's still progressing and doing well! However, there's also the kids his age that we see frequently that remind me of how behind he still is, so I don't want to be a downer, I don't want to sound ungrateful or feel sorry for myself but it's hard sometimes. Hard to see all the kids his age singing in the Christmas program, hard to see all the kids memorizing verses and getting patches on their vests at Awana, hard to have little kids point out the fact that Emeric doesn't talk.

The not talking is probably the hardest thing developmentally for me. Emeric has learned a few new words but with that he loses the ones he had. He is still considered non-verbal. I can tell that he wants to talk but can't. I know this because I will ask him to say a word and he will try to think of a sign for it. He wants to show us that he can say it but, he can't. He will repeat some words but you typically have to work with him for a long time before it sticks and even then he tends not to use it in the right context. For example, I taught him to say "papa" because it seemed much easier than grandpa. So I will say now, "say papa" and he will and I'll clap and be all excited. But, then I can say, "Emeric, say Kylie" and he'll smile and say, "papa" because he knows it will get a good laugh. So he's never used papa in reference to grandpa, he just uses it if he wants to be cute or if we ask him to repeat it. This is the way it is with most of his language. He does have a few words he uses appropriately like "nani" which is his blanket and he says mom and dad.

It's been really hard to know how to approach the language stuff. Do we keep waiting and hoping he'll just start talking one day? Do we teach him sign language? Do we use a communication device? Our fear has always been, well if we teach him sign language what if he then never talks? Well, at this point what if he never talks AND we don't teach him sign language? Then he has no way of communicating. He's picked up some sign language but even that has been pretty hard for him to really grasp so it's been a slow process. He can now say please, help, thank you and more in sign language.

He was 3 in August. Everyone kept assuming(including us) that one day he'd just start talking. And sure that might still be true. But his language has not ever developed typically like most kids. It isn't like he's just delayed, his language has always been weird... Meaning a lot of the first sounds he was making weren't typical first sounds and he's not continually building his vocabulary which he should be. He loses words before he'll gain new ones. It's like his brain can only hold so much or process so much, I'm not sure. I wish someone had the answer!

So we've started using a communication device, we've started learning more sign language, and for now I keep holding out hope that Emeric will eventually talk, it's just not going to be when we want it to be! The speech language pathologist we see has said she does think Emeric will talk but because he has a word finding disorder(you know when you want to say something and just can't think of what it is?) that he will likely always have some trouble with that. It's just hard to say how much and not dwelling on that is going to be my biggest obstacle to overcome!

I'll have to get a video for you all to watch, Emeric is quite the clown and he knows it! He enjoys making people laugh and likes to act goofy for any audience! :)

Kudos to you if you made it through this ridiculously long update!

Kylie's letter to Santa

Thistlehair, the Christmas bear

It's funny what you remember about Christmas as a kid. I remember my mom had this Alabama Christmas tape and everytime I hear the songs on the radio it reminds me of growing up. I just heard one of the songs today, "Thistlehair, the Christmas bear" and it brought back a memory of driving in our little yellow car back from the movie rental store & getting Dominoes Pizza.


We also spent the night at my grandma and grandpa's house and my grandpa would get up on the roof every year and shake the Christmas bells, pretending to be Santa. I used to always get scared when I was real young and he thought it was funny. ;) I remember finding out in 2nd grade that there was no Santa and crying to my mom about it who told me not to tell my younger sister. I still remember the girl that told me there was no Santa!

So far we don't really have any major traditions with our kids and each year I think about what traditions we could start. We have made a gingerbread house the last few years and opened stockings Christmas Eve with presents on Christmas day. I guess those are some traditions but it seems like there could be more meaningful ones!

We're stuck at home because of the winter storm. The girls are watching, "Alvin and the chipmunks" and then Jake is going to take them outside sledding. Emeric might go out for a bit but he can't stand up with snowpants and boots on so it's a lot of work having him out for too long!

Well, I hope everyone has a Merry Christmas!!

My thought of the day

Is it harder to be who you are or to stop being who you aren't?

Is it true?

If parents did not have rules about certain things do you think children would limit themselves on their own?

For example... If there were no rule about how much a child could watch tv do you think they would watch tv all day long, never turning it off, or would they tire of it eventually and shut it off themselves?

If a child was not forced to eat "good" food and instead could eat what they wanted, whenever they wanted it, would they eventually choose something healthy?

If there was no set bedtime would they eventually get in bed at a decent hour to get enough sleep?

Obviously for a while I think all children would take advantage of these things and probably sit around all day eating candy and watching tv but I'm wondering if this would continue? As a parent I think it's easy to assume that without all of these guidelines/rules that our children would always choose the opposite of what we'd want for them. But would they?

What if that didn't happen? What if kids could regulate these things(and others) pretty well on their own? Would it teach them more responsibility? Would they be more aware of how THEIR choices affecting them and others? I'm not suggesting children don't need some structure or some guidelines just contemplating whether it could be much less...???

I don't really know the answer, that's why I'm asking! :)

I do have an idea for an experiment floating around in my head but I'd love to hear some opinions on this first!

What's going on in our household...

Now that Kylie is in school I seem to have far less pictures of her... I also seem to be getting blurry pictures these days... hmmm.... maybe I should clean my lense?

Emeric and Kaydence on their way outside to play in the snow. This was before it got so ridiculously cold that you couldn't even breathe in outside or your lungs would freeze. He doesn't look thrilled but he was, even though he's wearing his sisters mittens.

Kaydence being, well Kaydence.

Can you carry around someone that only weighs 10 lbs less than you? I don't think I can!

Awww....

Silly face...

Emeric is apparently trying to show off his plastic Snow White shoe...

Eewww...

Kaydence on her 5th birthday!

Not a great week!

It always seem like things tend to happen at the most inopportune times(like right before Christmas!). First our dryer breaks down and we have to pay to fix it. Then our floor heat isn't working and we have to pay someone to come out and look at it. Then Jake gets an infected tooth and without dental insurance we'll pay quite a bit to fix that.

Now today my phone stopped working and I'm going to have to call someone to come fix it!!!

Seriously? This has all happened within less than a week's time. What will go wrong next!?!?

Wordless Wednesday