Sunday, September 23, 2007
The leaves are changing and the girls are enjoying being outside for these last few warm days. We've been picking lots of leaves, acorns, and flowers. I like this time of year because it seems easier to get cozy. You can lounge around in sweatshirts, light candles & drink hot chocolate. I enjoy fall!
We got our results from Mayo and all of Emeric's testing came back fine. Which again, is frustrating because it doesn't mean there is nothing wrong, it just means they still don't know what it is. Yesterday I got his "clinical documents" from them and this was his list of diagnoses:
1.Global Developmental Delay
2. Seizure Disorder with seizure-related, mild developmental regression
3. Nevus sebaceous with alopecia(this is a birthmark on his head)
4. Microcytic anemia
5. B12 deficiency
6. Failure to Thrive
7. Hypotonia(low muscle tone)
That list feels really overwhelming to me. Mostly because those are all secondary symptoms. Meaning they aren't the real problem, they're caused by something else. We need to find the primary cause of all of these things and that's where we're stuck. We met with his neurologist last week and she thinks we need to move forward with a muscle & skin biopsy. This is the only definitive way to know what, if anything, we're dealing with. We'll wait until November until we go back to Mayo and then see what the routine lab work shows. If it still isn't giving us answers we'll get the biopsy done.
Overall he's been doing better seizure wise. We just upped his meds again which has helped, although the last couple days he's been acting "off". He's running a low grade fever which I think is probably why. Today he had a few questionable eye twitches that I'm assuming were seizures.
Right now the PT is coming 2x a month but she's going to increase it to once a week to try to get him to catch up a bit. He still can't pull up yet and he stiffens his legs so they'll be working with him on that. The OT is coming 2x a month and she's been working with him as well. In her words he has "sensory issues"(which I'd diagnosed him with months ago, lol) as well as poor fine motor skills. Although, in my opinion, he's doing really well!!
Jake is continuing construction & keeping busy. We were worried he may not have work this winter but now it looks like he will. I'm looking around trying to find something to make a bit extra & get some debts paid off. It's hard to really make anything if you have to find someone to watch 3 kids so I'm hoping to find something at night where Jake can watch the kids. The only problem I keep running into is Emeric is still nursing & I'm not sure how he'd take missing that night time feeding. I guess we'll find out. ;)
Well, since it's Sunday I'd love to say I'm off to rest but, in all reality I'm actually off to clean my bathroom & catch up on some laundry!
Posted by Nicole at 11:44 AM
Tuesday, September 11, 2007
Last night we put Kaydence to bed without a diaper because she's stayed dry for at least a week at night. This morning, she'd peed in her underwear & was soaked from head to toe!! I asked her why her jammies were wet and she said, "The rain just did that to me!" Well, I guess it IS raining outside!!
Then she proceeded to the kitchen and I told her to go get her pajamas off. She just stood there and Kylie said, "Kaydence, go get your pajamas off" and Kaydence looked at her and said, "Don't worry 'bout me!" Haha! Kylie doesn't rule the roost anymore!!!
Posted by Nicole at 8:09 AM
Monday, September 10, 2007
It's been a while since I've update my blog so I figured I better write something! :)
The kids are all doing well. We started a Bible Study at a local church last week for women. They have free nursery for Kaydence & Emeric and a Little Lamb's bible study for Kylie. Kylie really loved it, Kaydence & Emeric cried the whole time! Hopefully next week will be better! Kylie also starts Cubbies on Wednesday, which she's looking forward to, & then dance next week. She's keeping busy! She's also been asking to do "school" alot lately. Specifically "high school". LOL So we've been finding free preschool curriculum online & she loves it!
Kaydence is following right in Kylie's footsteps. She repeats everything she says and she's started acting like her in a lot of ways. Sometimes it's cute and other times it's like having TWO 4 year olds, which honestly is quite annoying!
Emeric is doing pretty good. He's been sick with something the last week & running a low grade temp. I think it may be teething, but who knows. We still haven't gotten any test results back from Mayo, which is frustrating. I'm hoping to hear something this week.
It's gotten cold the last week so we've been cooped up inside, which means I've been doing some things around the house that I've put off all summer. I have a big list of to-do's!
This weekend some friends of ours are getting married. They're actually having a "Weekend Wedding Extravaganza" at a local resort so that should be fun!
Jake has been keeping busy with construction, mowing lawns, & playing guitar. Hopefully he'll be able to find enough work this winter. That's always the problem with construction!
Well, that's the extent of my update. Unless you want to hear about the other members of our family which include our cat & fish. Maybe, another time! :)
Posted by Nicole at 7:52 PM
Thursday, September 6, 2007
If you're eating you might want to put that on hold...
So the other day I was doing something and Kylie came up and said, "Mom, will we poop and pee forever?" I have to say I was a bit caught off guard with her question so I had to think for a moment about what my response would be. I said, "Uh, yep, until we die." Instantly she sighs, shrugs her shoulders and says, "But I'm getting tired of pooping all the time." Ya know, I can't blame her. It does get old after a while! LOL
The kids have been fascinated with this lately and I hear them DAILY while playing house say things like, "I'll be right back. I'm going poop." This is with Barbies btw. These Barbies poop and pee more than any doll I've ever seen! I also overheard Kylie informing Kaydence that you could eat your poop and drink your pee! DISGUSTING!!! Normally I don't interfere with their play but I just couldn't help myself when I heard this because I instantly pictured Kaydence in the bathroom with a cup. Blech! So I said, "Um, Kylie, people don't eat poop." And she looked at me like I know nothing and said, "Mom, Johnna said you can." Oh, ok well if she said so. She is 6 ya know, much wiser than a 4 year old! I informed Kylie that Johnna was wrong and she didn't seem convinced.
If this is how my girls talk I'm worried about Emeric at that age!!
Posted by Nicole at 10:24 AM
Monday, September 3, 2007
This past Friday a friend of mine lost her little girl Caroline. She was killed when accidently ran over by a bulldozer her dad was driving. She was 3 years old.
I "met" this woman online about 5 years ago through a parenting message board. I remember when she found out she was pregnant. She went to the doctor to find out how far along she was and ended up being 26 weeks & in preterm labor!! I remember when Caroline was born & the countless stories Erin has told about her little girl.
I don't think anyone understands how it can affect someone so much when they've never met this family in person but I saw this little girl in pictures everyday for the last 5 years. I felt like I knew her & Erin is a true friend. I can't imagine what she's feeling because I know how horrible it is for me and her pain is obviously much greater.
Please pray for this family. There names are Erin & Michael and they have a son Will. He was Caroline's best friend and I know he's confused and hurting as well. Her funeral is Wednesday, September 5th.