EEG Results...

Suck. Logen IS having seizures. We have suspected it for a while- he's not having the full blown entire body jerking kind (except for the one nearly 2 weeks ago).
Here are a few things we've noted in the past that point to seizure activity that I have somewhat ignored thinking it would all go away. Bad Mom, I know...
* Progress in therapy for a few months, then nothing for a month
* Night waking- blood curdling screaming, I've taken him to the dr for this numerous times, and everytime he checks out healthy.
* Blank stares, can't concentrate or focus for brief periods (1-3 minutes) Doesn't respond to his name, etc. This is the biggest sign of seizure activity!

So, I haven't decided if this is a blessing or not. I mean- if the neuro decides to do meds (and I'm pretty sure she will) we could see MAJOR changes in Logen, right? The St Louis Neuro is out of the office today and tomorrow. So, at the earliest I will hear back from their office on Wednesday. I faxed them the results on Friday. I dislike the waiting game very, very much.

Please says prayers for my sweet Logen. For now, we just wait. There is nothing we can do, but pray. The nurse from the CP Center said that if he has a seizure and it lasts 5 minutes or longer to go to the ER, otherwise- just keep him safe while he seizes.

Mission: FOUND!!!!

I am SUPER excited over this! I FINALLY found a bra to fit. I have probably spent well over 10 hours shopping for a bra. I can retire my bandaides (yea, I was going bra-less, wearing only bandaides- so pathetic- this I know) Saturday evening a girlfriend and I went to Victorias Secret (I spent 2 hours there the week before looking, finding nothing!) However, the trick. I was told the wrong size the 1st time I went in and was measured. So, my bra shopping misery was caused b/c some chick told me to shop for a 34D. When I put on that size Saturday and told the lady to come in and tell me what was wrong (I was wearing a dress, so when she came in I was in a bra and black thongs. She looked at me like "girl, put on some clothes!") She quickly said, "honey- this bra is far to small for you. You are falling out of it." I was like, lady This is a D!!!! So, she got me a DD and it fit great. Of course, I got the whole "a bra will never fit YOU the same ever again b/c they are made for 'real' breasts" speech, but- ya know-- I found one~ I'm good for now!!!! I tried on some lingerie... that's a whole 'nother story. I have no idea how I am ever going to find a 34DD top and small bottom!!!!!!

We have a CP Blog!

Hey fellow bloggers! Just wanted to post this link... http://cerebralpalsyfriends.blogspot.com

Here's a little about it. In 2005 when Logen was first diagnosed with CP, I found a board to post on, Baby Center. At the time there was maybe 1 or 2 people on the board. I signed up to host the board and in the last 3 years, the board has grown and I have made some amazing friendships along the way. BBC has changed their formats and some of the women (me being one of them) don't like the new boards- so we made our own blog. It's new- I just started it in the last week. Give us time & I am sure we will be just as huge as our board!!!! If you know anybody who would gain support from the CP blog, send them the link :)

Hugs blog family! ~Jess

Logen's EEG

Logen did pretty good yesterday at his EEG. Adam kept him up until midnight- they went to WalMart and bought a new toy, watched Tarzan, and made chocolate chip cookies at 11pm. I got the early morning duty- and woke him up at 5:30am. We watched Leroy & Stitch. He's been on Miralax- which has caused him to have some MAJOR big BM's. Needless to say, before 7am Logen needed 2 showers. I went ahead and took him to school and decided to work 2 hours that morning. I thought he'd do better wearing himself out playing and staying awake if he went to school.
When we got up stairs to do the EEG, Logen cooperated pretty well, he was just very wiggly when Larry was putting the electrodes on his head (there were 21 of them). Then, it came time to lay down. He wasn't so sure about that either. He did ok- the 2nd set of tests they blink a very bright light in your face and different speeds. Larry said, he needs to close his eyes for this part. I was thinking, Good luck with that one. Logen stared at it and laughed everytime the light blinked! Little varmit! He fell asleep for the last 5 minutes of testing, so Larry ran the first 3 over again- since little man was rather wiggly. We should get the results back in 2 to 3 days. I forgot my camera, so I took a few pictures with my phone- I had to had a few black mail pics :P


After the EEG, the "glue" left in his hair made for a lovely hair do!

Monkey Man

This would be my child. He took off running after I got him out of the shower. I found him climbing up his crib. It made me think of Godzilla climbing up a building. Why, I have no idea. This kid is a monkey- seriously. If there is something to be climbed, Parker WILL find it.

Here are a few more climbing pictures. Adam was in the garage putting stuff in the attic for me. He looked up and noticed Parker was almost all the way up the ladder with absolutely NO help at all.

A Seizure & 2 Smashed Fingers

So- that's whats been up with us.....

Tuesday and on into Wednesday were rather busy for us.

Tuesday- I get to therapy to pick up Logen. I unload Parker from the van. Put him down, turn around to close the door, and WHAM. Slam not just 1, but 2 fingers in the sliding door of the van. Ouch. The door bounces off of my fingers and doesn't close. Do I care? No. I walk into therapy, holding out my hand pushing my child with my foot. I hold my hand out as I walk in and walk straight to Erica (OT) nearly in tears b/c it hurt so bad. We determined they weren't broken- but the did swell up immediately and 1 started bleeding quite nicely I might say. The pain & swelling is still hanging around... I am learning to do things well 1 handedly.

Around 8pm I had gone to lay Parker down. I hear "Jesssicccaaaaa" being yelled several times. Understand Adam NEVER calls me by my name. It's usually, 'honey', 'baby', 'sugar'- you get the point. I get up knowing something has happened to Logen- b/c what else would he use my real name for unless he's mad at me, and I know that's not the case.
Logen is laying on his side- his entire body convulsing, his eyes darting, he's not responsive. We are saying over and over- Logen, Logen, Logen. Nothing. It must have been an eternity that this went on. No, just 1-2 minutes. It felt like forever. And, theres nothing you can do. Nothing to stop it, we just watch and wait.

After it was over- I called Tabi (Logen's OT). Logen had a REALLY rough day in therapy. He cried alot & wasn't terribly complient with Erica (OT, she see's Logen too) or Jenn (SLP). Tabi said there wasn't much we could do at this point, watch him and call the Dr's office. So, that's what I did. And, of course- our Dr's office triage's through AR Children's, so it's a PITA to talk to anybody- and even then, I knew they'd pretty much tell me to take him to the ER.

So, about 15 minutes later, the nurse calls back and guess what?! We are ER bound. The reasoning~ I told her that he'd had a fever on Friday (I had to leave work early to pick him up from school) and he'd been fever free since Saturday, but when I took him to therapy he'd had a rash on his back and chest that kinda of resembled 5th's disease (a viral thing). And now, the lovely 2 minute long seizure.

The ER was fun (haha). We learned practically nothing. They did lab work. All was normal. We did learn that even though Logen has had some pretty nasty loose BM's, he's constipated (they did bowel x-rays), loose stools can move past the hard 'stuck' stuff. So, pretty much- we left there and got home around 1:30am with no more info that we went in with. We still have no clue why he seized.

We went to the Dr yesterday morning. His Ped would be in Africa until July 7th on a medical mission trip (he goes every summer), so we saw a Dr we've never seen before. He scheduled Logen for an EEG on Monday morning at 10:30. Until then, we pray that he doesn't seize again. Of course, he's at an increased risk now. The Dr said it would take him several days to get over this (kind of like it would with the flu, it just wears people out) He's been sleeping alot, and is not himself- he's super cranky!

Please say prayers for Logen!!! Thanks for all of the kind & supportive texts in the last few days! Love you guys!! ~ J

Nothing "Concrete", But...

I am almost 100% postitive Parker is allergic to milk. We won't get the results until Friday (at the earliest). I have a list on my fridge of "Parker Safe Foods", and it's not very long- it's sad really. It seems almost everything has milk in it. I've made trips to the health food store and spent tons there. That stuff is outragously priced! A carton of soy yogurt is 1.29 for 6 oz. A half gallon of his milk is over 3 bucks.
So, back to how I'm pretty sure I know he's allergic- Saturday morning we gave him pancakes. Not even thinking about them containing milk. And by Saturday night his face had a horrable rash all over it. (He was Dx'd with Ezchema at a few months old, but now we think it's b/c of milk) And, by Sunday morning- his bottom was raw and bright red. He wouldn't even sit down. So, now- we've got to start being much, much more careful. I'm going to post our list of milk-free foods for reference- maybe some of you are interested in seeing it.

What A Day!

Yesterday was one of those days that you go through the day praying for it to end soon! I'll explain-
Am hours- blood testing (post "Allergy Testing")
Pm Hours- I went to pick Parker up at daycare at 2:45. His classroom was closed off. The site director said there was a gas leak or something of the sort- so Miss Julie had taken the children on a buggie ride (they have this neat wagon for Parker's age group that has 8 seatbelts). She told me the path they typically take- so I signed Parker out and drove around the building in search of my little boy. I don't see a buggie. I go back inside and tell the site director what I did. She takes off running out the front one way and another teacher takes off another way. So, I jet off in another direction- completely freaking out at this point. I'm picturing the whole "Without A Trace" scenario where the buggie with 8 kids and a teacher disappear. After 20 minutes of panicing, he's located. They had gone around the building next door as well- and were way off the 'typical' route. You can imagine how shaken up I was.
I realize it's 3:06 and I have to be 15 miles away by 3:16 to get my friends 2 daughters at the bus stop (I've been getting them for the last 2 weeks- they go to an all year school and the last month of school the bus routes are limited, they bus to 1 location close to a students home, but certainly not walking distance- somebody has to pick each child up) I send Ann (their mom) a text telling her I'd be about 5 minutes late. At 3:18, Jason (their dad) calls. I answer the phone in complete panic mode, nearly in tears so worried about the girls. He didn't even know I was late and pretty much coached me through breathing until I got to the stop to get them. They were standing there (alone- which p's me off b/c the bus driver should not have left them there!) the oldest one in tears. I felt like a terrible person. I hugged her and told her I'd never forget them and I loved them very much. At that point, I was pretty much crying. I remember being 9 and can relate to that "what if somebody forgets to pick me up somewhere" feeling. Ann said they were fine last night and I needed to calm down!!

Allergy Testing

Parker went in for a blood allergy test this morning. He was the happiest kid ever before hand. He did awesome sitting in my lap in the lab chair. They had pictures of dogs on the wall, so he was pretty occupied looking at them. When the nurse came over to draw his blood- I very firmly said, last time we were here he got stuck 3 times before they got a good vein. We are not doing that again. You stick him once and get what you need. his veins blow easily, so be careful. She looked at me like, "ooook psycho mom". She had 2 other people come look at both of his arms, the last person to look at them was the one to draw the blood. I think that one lady was scared of little 'ole me!!!! We *should* have results in by Friday. His poop hasn't decreased by much. His bottom did look a bit better this morning. We went into the dr for a quick look yesterday and the APN gave me some samples of a higher-whatever anti-fungal cream to see if that would help. I am actually praying he's not allergic to milk. I don't know what we'd do! I spent nearly 20 bucks last night at the health food store on 8 slices of rice cheese, 6 (6oz) containers of soy yogurt, and a tiny little box of milk free cookies. The kid is totally going to break the bank!!!!! I took a few pictures with my phone after we got back to the car. He was fascinated with his cotton ball and tape.

Parker Trouble

I had to 'document' this before I forgot.

Last night, Parker tried to bite Adam. So, Adam points a finger at Parker and says 'no bite'. Parker looks up at him, sticks out his finger and shakes it back at him mumbling some gibberish. He then climbed off the couch, tried to bite again, and was told 'don't you do it'. He loudly yells at Adam "Uh-Uh", turns and runs off giggling. This little dude is a mess!

If you really knew me... you'd know this.

Things are much better in 'that' area- I found this, did some revising so that it pertained to me and am sharing with you.

1) I desperately want to be accepted, not only by you but by me, too.
2) I am afraid of not winning this battle, I think I've already lost it.
3) I haven't figured out who I am
4) I have a hard time with the concept of forgiving, mainly myself
5) I'd like to become comfortable with the idea that I am ordinary and that there's nothing wrong with that
6) Sometimes I just want people to listen, not talk, not interrupt, not offer advice or suggestions. Sometimes all I want is somebody to sit there and listen and to feel like I have been heard
7) Sometimes the weight of my sadness is bone-crushing, like the pressure of water down deep
8) I hurt myself because it's the only feeling (pain) that I can stand to feel {While I do not currently binge & purge- I'm leaving this one, bc I can relate, I was there not to long ago)
9) I am terrified of not being a good enough mother
10) At the start of the next day, before I even brush my teeth, I ask God to help me stop myself from this (the same applies here- I can remember mornings before I would even climb out of bed, pleading with God)
11) There are so many things I wish I could say
12) Words and actions hurt me even though they weren't meant to (Ie: when I am told I am skinny or pretty, I feel like people just say it to be nice)
13) I am so incredibly mean to myself. I wouldn't talk to any other person on earth the way I talk to myself
14) What I want right now more than anything is love from myself. If I had more self love then the criticisms, the negativity, the thoughts, the low self-esteem, the self-doubts would all cease
15) I sometimes need your help, but I'm not sure how to tell you this
16) I'm head-over-heels in love with my boys and my husband
17) I don't think I will ever fully recover from this
18) I don't like the eating disorder, I just am having a hard time disliking it (again, I am practicing old habits, just thoughts)
19) I want to make a difference in the world ~ I would love to beable to help young girls with the issues I've had.
20)I believe that everyone's flaws should be accepted and forgiven except for mine
21)I'm always in a state of obsession. My mind is always going a mile a minute and my ED is ALWAYS berating me for something. I never have a moment of pure peace or silence in my head.
22)I'd love to escape to somewhere by the beach, eat, drink, dance, without a care in the world
23) Somedays, I feel there's an empty hole in me
24) No one could be-little me more than I do myself
25) It takes alot to trust anyone
26) The ED was the only constant in my life, the only thing which felt unchanging regardless of what external events happened. The ED was the only guarantee, the only certainty, the only thing loyal to me throughout everything that came my way
27) Don't give up on me
28) "Me" in the mirror always looks fat and ugly- I want to have a normal day. I want to wake up and feel pretty. I want to look in the mirror and see what everybody else sees b/c I have no idea what that is- and I hate that.
29) No matter how many times my husband tells me I'm beautiful, It never sinks in that he may actually think that.

Free Book!

I am so doing this!!!!
You take one of your used books, go to this website and register your book to get an id, put a sticky, label, scribble, inside of the book with the website and id#, and leave the book where someone will find it. (think drs office, grocery store, park, etc) That person goes to the website, claims the book, and passes it on. I would be so super excited to find one of these.
The website has all of the instructions, supplies, downloads, etc. http://www.bookcrossing.com

It's Been Decided, It's Cool To Be Lacto-Free!

Guess you didn't get that memo, did you?

We just got it yesterday. After Parker has had about 5 weeks of diarrhea and a red, bleeding, clear oozing diaper rash. He poops 30 minutes after he eats anything. It can be a big meal or just a few crackers. So last Friday, I had the pleasure of hand delivering poop in a biohazard bag to the hospital lab. The poop has been in the lab to see if anything would grow on it for a week now. Nothing. Which, is good news. But, doesn't tell us anything either. He's been stuck right around the 20lb mark since December. Which means he's not really growing. He's not falling off the charts, which is good- but we are in negative percentiles- in everything.

The plan for the next 7 days- go dairy free. No milk products. My baby LOVES cheese. He will sit at the fridge trying to open it in tears to get a piece of cheese. We've always, always had problems getting him to drink milk- maybe it hurts his tummy- could explain alot right there.

So, yesterday afternoon after I talked to the APN at the Dr's office, I headed to walmart to attempt to fill the pantry with "Parker safe" foods. I walked through the store crying picking up things label reading. Only to find that most everything we eat has a label that says "contains milk". Logen would lean over and bite Parker, then they would both scream. I was on the phone with Logen's OT (both of her children have milk allergies), as she was guiding me through the store telling me a few things that would be safe. She's going to put together a list of 'safe' foods today. I still have no clue how I am going to not starve my kiddo.

Look in your cabinet- I'd bet most everything you have contains milk. It's insane. I wanted to lay down in fetal position in walmart and scream. Lets just add 1 more thing to the mix why don't we?! Apparently God thinks I can handle all of this. I have news for him, I don't think so. This is to much. To much I tell you. We are talking about a huge diet change. If Parker can't eat it, then the rest of us can't exactly eat it infront of him either. So, I am going to need to learn a new way to cook. And shop, and where the crap are we going to eat out?

At the end of 7 days, if his butt is clear and his poop has decreased- then it's a milk allergy. If not, we look onward. We start with blood work- testing for other common allergies. The dr is sure it's a food that is doing it to him b/c why else would NO rx bootay cream clear up his bottom. I have spent well over 200 bucks on his hiney in the last month. And, he screams when it's changing time. If he'd just not poop so much.... Say a prayer for us all. We need it!

Worst Morning Ever

I'm a day behind on posting. I was caught up on the medicaid crap yesterday, I forgot all about how horrid our morning was. And, yea- I know, it was not that bad in the large scheme of things, it could have been much, much worse.

Monday was Logen's last day of Preschool. His school is run like the public school systems. So, yesterday- he started in the same program that Parker is in (they work hand in hand with his preschool as well) I had not met the morning teacher yet. The teacher that comes in at 8 I worked with, and had requested her. (I worked at this program when I was pregnant with Logen, thats why I decided to put Parker here) The site director had met with Ms Lewis (Logen's school yr preschool's site director) before, and knew about his needs. However, when I went in yesterday morning and was talking to the morning teacher she had a blank stare and looked completely clueless. When I walked out of there I was so scared. I have NEVER feared leaving my Logen in a place before, simply b/c if I didn't get a good vibe, I didn't leave him. I went against my vibes and left yesterday. I walked out in tears, which of course upset Parker, who starts crying a mile before we get to his center. I called Tami at Logen's pre-school in tears. I said, it's not a good fit and I couldn't do it. Immediately, Ms Lewis got in her car and went to check on Logen. A BIG BIG BIG relief to know that they have his best interest at hand. Tami transfered me to the program coordinator, Maria- who also sent somebody to check on him (the main office is right across from the center that Logen is in). By the time I got to Parker's center to drop him off the poor child was crying so hard he was shaking. His teachers was trying to console me and him. Can you imagine? I made it to work and got busy, and was fine. When I picked Logen up- he had had a great day- no tears. He had eaten great, 2 helpings of everything at lunch, had a big poop, and was standing up on his cot when I walked in. Janet (the teacher I requested) went on and on how how sweet he is. This morning when I dropped him off, I had a much more positive attitude. Of course, Parker still started crying a mile away, but this is nothing new. And, his teachers assure me it's only for my benefit b/c he stops when I leave. Still kills me!

The Government BITES!

Those of you who deal with medicaid can totally relate. For the last several years, we have fought to keep medicaid for Logen. In Arkansas he qualifies for TEFRA. To qualify, you must 'qualify' for 2 or more therapies. This form of medicaid is secondary to provate insurance and isn't income based. Depending on Adam's income for any given month, the form of medicaid we get goes back and forth between SSI and TEFRA. Here's what bursts my bubble. We FINALLY qualify for checks for Logen. And, yesterday- I open the mail and read a lovely letter. Apparently the government has OVERPAID us 3,000 bucks in the last 3 years. And, we have 20 days in which to give it back. Nevermind the fact that it can take them 3 years to give us money that we need for obvious reasons, but them they expect us to pull 3 grand from where in 20 days? The way the system works makes no sense. They are the federal government... why send out money if you know you are going to ask for it back?! They see what the crap we are paid each month. We pay taxes! I sent in paystubs. How did they miss this? Is Logen going to get kicked out of the medicaid system b/c of their screw up?
My kid has CP, nobody asked for this! We just asked for a bit of help to give him a good life. W/o medicaid, Logen can't get therapy- our private insurance only covers 60 sessions per year! We used that in January. What about his thickener. Insurance doesnt cover that either. It's 2 bucks a package. 1 pkg is good for 4 oz of liquid. Do you know how much that would cost us a month. We would be living on the streets! I'm seriously thinking we should stop trying so hard, stop working, and live off welfare. Why in the world does the gov't want to continuesly help people that can't hold down a job, are in our country illegally, have 15 kids and don't even try to make it?
I'm ticked. I don't have 3 grand to give the government. My family has to eat. My child needs therapy, special services, etc. It's not like we use the money to support our habits. We don't smoke, don't abuse drugs, and we aren't alcoholics. The money goes to help pay Logen's medical expenses- our St Louis Trips (To the Cerebral Palsy Center) medicaid doesn't cover (and is out of network for our private insurance), so we used that money for those! I'm trying to go back to school. I'm already taking out student loans- I hate debt. I refuse to pay them back with a credit card and acrue 20 something % interest. Yes, that was an option on my bill. Whaaaat?
Just wanted to get that off my chest, I don't feel much better. I still want to chunk something out the window and scream!!!!!!!!!!!!!!

It's Gone!

7 pages! I finished 7 webpages yesterday! And, you know what happened? Yea, I did NOT save as I went. So, some stupid computer something happened and a box popped up and said, we must close... blah blah blah. Would you like to send an error report? Um, what do you think? I just spent the last 3 hours creating webpages and now they are gone. Of course, the first thing my boss says, did you save along the way? Oh, no I forgot. I relied on a computer. Now it's a joke. He said he found something to put on the computer that will pop up every once in a while saying "do you need to save anything?" Hahahahahahaha :P So, guess what I am doing today?! SAVING!!!!!
Just had to vent! Phew.
Dawn- I liked you idea for a name. Keep 'em coming guys :)

In Need Of Input!

Help Me Out, Puh-Leezzzz :)

When I worked at the college before I was working on a web-page.
Here's a brief run down- I recieved my level one CRLA tutoring certificate when I was working before. In order to receive each level you must complete a certain # of hours of training, tutoring, and we also have these questions to answer- kinda like what would you do type things- To get to each higher level they add something else you must do. Like 15 hours of training and 30 hours of tutoring, certain # of the questions, and do a project. (I am not exactly 100% sure on the hours mentioned above) I had completed all of the above minus my project- my "science help" website.

So, where I WANT and NEED your Input----- Help me come up with a NAME!! Science Help Website sounds gay. The courses included now are Chemistry, Biology, and Anatomy & physiology- as I take more and more science courses, I will add pages to my site.

When I publish the site- I'll post the link :) DON'T FORGET TO POST YOUR INPUT!!!!!!

Kid Funny

I wrote this one down and stuck it on my fridge so I'd remember to blog about it.

One evening last week, I was on the kitchen floor cleaning. Parker came up to me and pinched the fire out of my nipple. I yelped like a dog- I'd bet the neighboors heard me! Logen came running in pretty quickly. He spanked Parker's bottom and got in his face doing the "one fingered point" saying "agggg" to him. I'm sure he was telling him "do not pinch my mom's nipple, don't you know that hurts her? I mean, seriously dude! Did you hear the way she yelled?! Ouch!"

I've Blogged for a year!

Wow... thanks for sticking it out with me blog family :) We've made it one year! There have been over 5,000 views to the blog. In the last month alone, 5 countries have stopped by & 29 states from the US!

I am very very greatful for you all! Thanks for everything!!!! Love you all!!!!!!!!

Hugs~ J