Thursday, March 27, 2008

Well, today is a better day with the kids than the last post. Of course they haven't gotten up yet either so things might change soon. LOL I was supposed to leave for Bible Study this morning but I can't bring myself to wake all the kids up. Kaydence never sleeps this late. Jake and I have started calling her The Insomniac because she is such a horrid sleeper. Emeric doesn't usually sleep this late either but he's got a little cold so that's probably why he's still in bed.

I have mentioned a little girl from Fargo a few times here, Caroline. She passed away last night. Please pray for her family if you can. I've followed her story for about a year now.

Not a whole lot planned for today. Emeric has PT today and then we've got a "fun night" planned at the church. Just games and pizza and stuff I guess. Should be "fun" hopefully!

Tuesday, March 25, 2008

My kids are driving me absolutely insane today. Kaydence has been whiny, crabby, snotty, crying, screaming, etc. all day. Emeric has a runny nose and apparently isn't feeling great so he's been crying most of the day. Kylie is in a fairly good mood. Although I'm surprised since I've been so crabby at her. :( You'd think after 4 days away last week I'd come back feeling refreshed but nope. I mostly feel like taking a nap or a bath in peace and quiet instead of listening to screaming and whining and wiping snotty noses. That is all.

Thursday, March 20, 2008

Home from Cleveland... AGAIN!

It wasn't quite as bad in Cleveland this time. There wasn't as much snow and while it was raining it was nearly 50 degrees one day which is warm for me this time of year! I'm also learning my way around the city more so it isn't quite as bad driving. Emeric and I went shopping on Tuesday which I'm sure he loved! ;) It's so boring sitting at the Ronald McDonald House though because there is nothing to do. Even a TV in the room would help some! We did meet another little boy who is a few months older than Emeric and has Mitochondrial Disease so his mom and I talked quite a bit.

On Wednesday Emeric had his biopsy. We had to be there at 7:30am and his biopsy wasn't until nearly 9:30. I went in with him while they put the mask on and sedated him and then I went and ate some breakfast. The entire procedure took just over an hour. It was funny before the procedure they came and asked which leg I preferred they do the biopsy on. I told them I didn't favor one leg over the other and to just do flip a coin. Nah, not really but I did tell them it didn't matter to me. So they chose his left. Must have been the one closest to the knife I suppose.

He seems like it bothers him more today than yesterday. He is ok as long as he's just gotten his Tylenol with codeine and you aren't moving him but as soon as you move him he cries. His leg is really swollen. Maybe I'll post a picture for thost that aren't completely grossed out by those things. So if you are grossed out than consider this your warning. ;)

Not much planned for the weekend. We're doing Easter with Jake's family on Sunday. I would've liked to go to Grand Rapids but figured Emeric would probably rather stay home.

Thursday, March 13, 2008

My jumbled thoughts...

I went to Bible Study this morning and we sang a song that seemed so perfect for me lately. The last fews days I've just been so anxious with trying to get a flight scheduled, a rental car, hotel, etc. and also worrying about Emeric's biopsy and what this all means. At our Bible study we're studying Daniel and we've been talking about fiery trials and what different types of trials do for our faith. Then yesterday I turned on the radio and the man was quoting the verse(don't know the reference right now) about how God's grace is sufficient and then talking about Job and how after Job had lost everything he said to God, "My ears had heard of you but now my eyes have seen you." That is what trials do for us. They refine, strengthen and increase our faith and they make us realize we have nothing without Christ. Of course I still struggle with that fact daily and with believing the lies that Satan throws in my path of guilt, fear, distrust, etc. but like a girl in Bible study shared, if God was not trustworthy we would have no reason to trust him. He is trustworthy and has everything in control and I need to keep reminding myself of that fact instead of driving myself and those around me crazy with worry.

I wanted to share this song we sang that was so perfect today:

Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father's wise bestowment,
I've no cause for worry or for! fear.
He, whose heart is kind beyond all measure,
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.

Every day the Lord Himself is near me,
With a special mercy for each hour;
All my cares He fain would bear and cheer me,
He whose name is Counsellor and Pow'r.
The protection of His child and treasure
Is a charge that on Himself He laid;
"As thy days, thy strength shall be in measure,"
This the pledge to me He made.

Help me then, in every tribulation,
So to trust Thy promises, O Lord,
That I lose not faith's sweet consolation,
Offered me within Thy holy Word.
Help me, Lord, when toil and trouble meeting,
E'er to take, as from a father's hand,
One by one, the days, the moments fleeting,
Till with Christ the Lord I stand.

Wednesday, March 5, 2008

And it's begun...

You know, that stage where you can't do anything without your kids getting into SOMETHING? Where you have to watch them every second of every day? Well that's where Emeric is. He's constantly into everything. Yesterday I was filling up the bath water to take a bath and Emeric got into the bathroom and had the plunger in the bath water! Gross!!!

Here's the evidence: (And a cute one of Kaydence!)

Tuesday, March 4, 2008

99 Balloons

I wanted to share this video with you. This little boy has Trisomy 18. My cousin died of Trisomy 18 so maybe that is why this video is so meaningful to me. Also because these people took something tragic and praised God despite of it. They are very inspiring to me.

I haven't updated in a while. Everyone is pretty much over their sickness except for me. I still have a stuffy nose and can't taste much of anything. We've went through 5 boxes of Kleenex here in the last couple weeks!!

Jake is hauling potatoes so he's been gone a lot. He can come home for a few hours in the evening once in a while but if he does that he doesn't get much sleep so it's better for him to just stay gone so he can sleep. The girls have really been missing him and Kylie wrote song about how she misses him and how they don't get to see each other very often. LOL It was pretty cute!

Emeric is doing well. Since we increased his meds I haven't seen any seizures. I'm hoping that lasts! It seems like we get good seizure control for a while and then they start coming again so hopefully the meds will help more this time. He is still receiving Physical THerapy every week but is sort of at a stand still. His tone is so low through his trunk that he has a hard time feeling stable enough to stand. He also doesn't cooperate real well when the PT wants him to actually work!

The OT has been gone for the last couple weeks so we haven't gone in. That's been ok though because it's hard to get all the kids in there every week. Emeric hates that too! Even more than the PT so it makes it more work than it seems to be worth!

As he's getting older some of his delays are more obvious. Especially that he doesn't want to really interact with other kids. My sister described him as anti social which is so fitting and I've noticed it more and more lately. He doesn't play with the girls he just wants to take their toys, pull their hair, hit them, etc. He will laugh if they're doing something funny but other than that he doesn't want to play with them. We were at Jake's parents house the other night and his cousin Ethan, who is 10 weeks older than him, was there and Emeric could've cared less. Ethan wanted to give Emeric a hug and he just kept hitting at him. At one point they were both sitting on the coffee table and Pat was gesturing for Ethan to jump to her and Emeric is just oblivious that he's even there.

I don't know, maybe this is one of those things that you can't understand unless you see him. I know a few people notice it. Others notice it but try to explain it away and say it's nothing. I know him too well though and I know it isn't nothing. I know he doesn't act like a typical kid his age. Some of it is his delays and some of it is more than that. Jake is somewhat anti-social so I've been told Emeric is probably just the same way and that may be partially true but in other ways I know that anti social people tend to become that way over time for different reasons. With Emeric it's different. It isn't wrong or bad, just frustrating at times.

Well, Kaydence is up and is hungry as usual so I better go find her something to eat before she withers away!

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