The Verdict

I spoke with the APN this afternoon- the Neuro wants to increase Logen's Zonegran. He will be getting 25mg in the morning and 50mg in the evening. She said his dose was still pretty low, so he will beable to go up quite a bit if needed. If no seizures, I will call back in 2 weeks. Hopeing I don't have to talk to them again for 14 days!!!

I'm still in awe of the fact that at almost 5 y/o we START having seizures. I know there are alot of you who's child has had them for a while, and are *used* to it, {{kinda- I'm in edit mode and don't get my original point. Seriously, I know you don't really ever become 'used to' something like this. What was I thinking.....?}} Like the fact, that everything else that we hear (that we'd just rather not hear, well just rather not have to have our child going through) I don't want to accept it. I keep thinking, if I don't see it it won't be there. We've had a dx (yet now we aren't so sure, for the last year we've been not so sure) for over 3 years. It's still sinking in. It's hard, and it's even harder for my little man. Blah. It just sucks. Simply stated- It Just Sucks.

Thanks for reading my "non-positive attitude" vent :)

Logen had a seizure again

I forgot to mention. Logen seizued at the dinner table last night. It was one of those 'freak' staring spells. He just dropped his head back, rolled back his eyes and went non-responsive. It only lasted about 30 seconds. I am waiting on the nurse from the CP Center to call me back. They said if he was still having seizures at his current dose, they'd most likely increase it. My poor little Logen. He's already fairly lethargic on it now. He goes from laughing hyena to mad to asleep in minutes.


Anybody know of any aggresive-ness associated with Zonegran? Logen seems to be mean, like hitting us or biting. Not sure if he's just more frustrated or the med is making him crazy. Any help would be great!!! :) Thanks

News

So, I am beginning to think my blog is a downer. Do I ever post happy posts?

I went to the OB today (no, I am not pregnant!). We changed my birthcontrol (again). We increased the hormones. This will tell us if my migraines are hormonal. It should make them worse. *sigh* Our other option was to stop birthcontrol to see if they go away. We did this at the beginning of the year, no such luck. Plus, I am not a fan of 3 children- atleast no yet. My boys are more than I an handle sometimes. (Yes, I am VERY grateful to have 2!!) I'm still in need of a hysterectomy. It's just so final. I am ok with me making the decision to be ok with 2 (I don't have much of an option since my cervix sucks and stays open) but for a dr to make that decision for me, well- I don't like that idea so much. Just when I think I have accepted the fact that I will only be a mom to boys, I get hit in the face with- oh, yea- it's real you can't really house another baby b/c you just don't have a cervix that will close enough to hold it. And, there's that whole risk of a preemie. I don't think I could go through leaving another baby at the NICU an going home empty handed. That was way to hard. You momma's that leave you baby in for months at a time are amazing. (Not that you have a choice, right?) Parker was only in there for 11 days. 11 days to long. My kids seem to have a pattern- Logen was born at 36 weeks and Parker at 34 weeks. I can't help but think *if* I was able to have another, that child would be born at 32 weeks. And, that's just to early for me to wanna risk.

So, I am bummed today :(

Oh, by the way-- would you say a small prayer for me? I had a spot that suddenly appeared a few weeks ago removed last week. It was discolored and jagged edged. My derm said, 'honey, we really need to take this off to send to pathology.'

A Teen With CP Said...

Erin found my blog and commented. She's a 16 y/o with CP. I went to her blog, and found this. I have to enter in my thoughts b/c what I read I pictured Logen saying to me, well not 'saying' but telling me with his 'talker'.
Hers are in italics (Hope this is ok to post Erin!)

Why is life so hard? I wish it wasn't, for you, for Logen- for every special needs child/adult. I cry to.
Why am I like this? My guess- you are special. God made you in his image. You are exactly how he wanted you to be. And, I know it's not easy. My baby struggles to.
Why can't I just be normal? I pray for this. But, what is 'normal'? Is there anybody out there that is 'normal'. I don't think so. I know I am not quote, normal.
Why do I have to face so many obstacles, so many challenges? I wish I could answer this. Just know, you aren't alone. I watch my little boy face them everyday. Anything from walking to trying to swallow. I see it to, and I know it's not easy. And I hate it for you. I know lots of mommies (particularly ones who post on the CP board with me) question that same thing. We want to know to...
Why do I have to be the one that's stared rudely at? I wish they would stop. Logen gets those looks too. I want to tell those people some 'not so nice' things. Stop staring....
Why do I have to go through the pain, the surgical procedures? We haven't faced 'surgery', but Logen's been through procedures. And, I can't tell you if he physically hurts. B/c he can't really tell me. He has decreased sensation... or atleast thats what the 'professionals' say. Emotionally- I pray he doesn't yet see that people think he's 'different'. I am afraid that will hurt the most.
If there is a God, why would I be this way? Does he think it's funny that I have to go through this? Why? Just why? I'm losing my faith. I'm beginning to think that there is no God. I wonder this too.
It's all just a cruel board game called life. I suppose I should remember that life is a bitch because if it was a slut it would be easy... Just a cruel board game that I'm losing. I'm ready to through all the pieces on the floor and just say 'screw it'... You aren't losing. Look how far you've made it. Mom's like me LOVE to hear from kids with CP. B/c it makes us realize there is something to look forward to. Life is not easy. I may not have CP, but I've dealt with other issues and from that- I know life is no 'tree in the park'. But, we are still here. So, there is a reason for it. Even if we have no clue why.
I wish I knew what was ahead, what was coming, what lies ahead of me, and if it's really worth it. I wish a lot of things. They never seem to come true.. So why wish? Why believe?Why live? I know of several momma's out there who want a glimpse of the future. What lies ahead for our babies. We ask the same questions to one another. We praise the progress and question the future. Maybe it's just human nature. Be brave, keep believing, and stay strong. We are all 'here' for each other to lean on. Keep truckin' on Erin. Keep wishing, keep your faith, keep living.

Ick, Therapy Schmarapy

I was laying in bed last night thinking about this. Logen spends 14 hours (during the school year, its 16 to 17 hours) per week in therapy. Our life seems to revolve around his therapy schedule. My classes this fall (and work) will have to work with therapy. I'm very happy he gets such an intense amount of therapy. He seems to love going, and is generally pretty cooperative most days. Then, I think about people who have kids that don't have therapy. They can take them into preschool and go on about their day. Pick up their kid after work and go home. In no way am I saying that life with a 'typical' child is easy. I have a 'semi-typical' toddler, and while I secretly love that he can do all of the 'rotten' things he does- I still hurt for Logen. I don't really know what I am trying to get at. It all made sense in my head.

Here's today's schedule for example:
730, drop Logen off at preschool
8, drop Parker off at daycare
I tanned (and took a small nap)
9, home to pick up around the house and shower
1145, go get Logen
1230 Logen- speech therapy
1245 meet friend at dr to help her
130 Logen- physical therapy
230 head to the pool for OT
300 Logen - (OT) Pool therapy
415 go get Parker
515 home to get dinner ready, and prepare for baths and bed

Our days are just crazy. I guess there are many times I wish things were different. I wouldn't have a clue how to go through a day w/o therapy. Sure we get the weekends off from therapy, but they are generally packed with things to do as well. Sometimes, I just want 'nothing' to do. :P

Speech Eval (Post # 1)

Parker was somewhat 'non-complient' yesterday. If you can imagine that....

We did finish the eval, however- the first half hour was spent like this:
SLP: Parker, can you point to the bear?
P: No
SLP: Can you show me the ball?
P: Uh, uh
SLP: Can you say 'bye-bye'?
P: No
SLP: Where's the cookie?
P: NOOOOOOO

She thinks he has a bit of low tone in his mouth (will catch up, it's b/c of being born early). He does have several words- but doesn't make all the noises a 'typical' 21 month old would. She will score the eval and let me know if he qualifies. It sounded like he will qualify--- so we will see. I'll let ya know!

Parker's Speech Eval

Parker has a speech eval this afternoon. Say a prayer for us. I'm *hoping* he's not to far behind or is right on track. I'm so paranoid that he's not going to be 'normal'!!! He's been through an OT eval (and passed, came out in the low % of normal- could also be that he was a preemie). People kept telling me Logen would 'catch up', I've heard it a few times with Parker and am not going to sit back and give him the chance to lag behind *if* he's behind at all.

I'll post the results when we get a copy of the eval- but will post something tonight or tomorrow.

Trina Weekend :)

Trina (Hannah's mom from the CP board) flew in for the weekend. We went camping in 100 degree weather (smart decision, eh?) and floated the river Sunday. We had crazy fun :P And even took pictures (from our cell phones, so not great quality) to prove it. I do have a throw away camera somebody got ahold of Saturday night- so there is NO telling whats on it. I'll upload those when I get them. Now, I've got to figure out when I can go to Idaho!
I'm still in shock- Trina didn't know what okra was. Any other northerns that don't know what fried okra is? She ate some while she was here, and I think she liked it.
On the way to camp. Stopped at Wal-Mart for 'camping drinks'
Sunday Morning, getting ready to get on the river. (No makeup on, and after a long hot night!!)
Jess & Larson (one of our LONG time buddies)
Self Explainitory
We brought along a 'beer bong'.
Cleaning up camp

One Of Those Days

... again. I really don't think they will ever end. It gets more apparent everyday.
Logen is different.
And, I hate that. I take him into preschool to drop him off, I watch the other children- many of who ask me questions. 1 little fellow in particular loves talking to me. He even calls me Ms Jessica when he speaks to me. I see the 'typical, normal' children playing. The way they manipulate their toys is a wonder to me. It's just crazy to see what other kids his age can do. And, then of course I am left with that "Why can't he do that to?" feeling that seems to creep with on Mom's who have children with Special Needs.
I don't like that little girl that told me Logen was and is weird. I hold a grudge. I think there is something wrong with a 23 y/o who can't forgive a 5 y/o for things she said, she might not even remember saying that.
I don't like the fact that I'm reminded constantly about my son's 'different-ness'. That just plain sucks. I have to ask God why he did this to us. What lesson is this teaching? And, why couldn't he just teach me and not allow Logen to go through something like this.
I sat and talked with a mom at therapy Wednesday. She's got a 13 y/o with Autism and she just had a baby 3 weeks ago. She was talking about her P going into middle school. And, she said she couldn't handle that- shes decided to homeschool atleast this year. She said they just have to much to work on. It was to hard for her to see the way P was treated by peers and middle school would surely be harder. I think about this, I send Logen to kindergarten Fall '09. I don't think I can do it. I freak out when a kid says he's weird in preschool. But, the thing is-- kids seem more cruel these days. I don't remember being mean and hateful to kids that were different. I don't even remember noticing that kind of difference until JR high. And, by high school I was so caught up myself and MY life that I didn't pay attn to others. I had a parenting course on the Special Ed wing of the high school. So, you could look in and see them. The majority of the kids were just chilling in their wheelchairs. They weren't ever out in the halls roaming freely like I could. And, that made me a little sad. I guess I didn't put much more thought into it.
So, really what I am getting at is that I am SCARED to send Logen to school. I don't want to do it. But, I want to finish my degree(s) as well. And, I can't do both. So, how do I know whats right? Will it totally screw him up to send him off to a place where he may not be accepted? I hate that. I *wish* no kids were mean.