While 'm Waiting

I am striving to "wait" this way. What a beautiful song!

CT Tomorrow

Thanks for the thoughts today :) I had to reschedule my CT for tomorrow b/c my Momma wasn't able to watch Logen for me this afternoon. I go in tomorrow morning. I am beginning to get nervous about it. I know a regular CT is 'no biggie', I just don't like the contrast IV and no eating part. Then there's the whole waiting for results part! * Send NO tumor vibes my way *

I stopped by the lab today to get my 'urine jug'. I am going to post a picture of this thing. It's huge! Logen was happy to carry it out of the hospital for me though. The lab tech handed it to me and said, make sure to keep it refrigerated. I said, you want me to pee in that tiny opening and put it in my fridge? hahaha I will do this starting at 7am Sunday and take it in Monday morning- the holidays are throwing testing off.

Neuro Call # 1

Did you know these tests can take 3 MONTHS? Me neither.
The nurse said depending on who orders (when, how, etc) the testing they can come back in 3-4 weeks, but it's not likely. And, there's a possibilty we will be waiting around 3 months for any news. Lovely. She told me to feel free to call every Monday and Friday to check to see if they have results, but that as soon as they get them in the nurse or Dr will call us. I thought to myself, lady- I will be your worst nightmare. I am one of those moms.
We see the geneticist next week, so maybe he can help shed some light on things. Oh, my poor nerves!

2009 Resolutions

Not to do anything incriminating (like, say, toot in public) in front of my two-year-old, who will promptly give me away–loudly–to anyone who will listen.

Not to let the Cheerios littering the floor of my car get crushed, then spilled on, then formed into dried lumps permanently stuck to the carpeting.

Not to forget my kindergartner’s folder, lunch, jacket, show and tell, class picture order, and the fact that it is “wear red” school spirit day. Dang kindergarten is hard!

Not to use my six arms to drive, change a CD, talk on my cell phone, hand my son a water bottle, and eat a bite of breakfast all at the same time.

When I hear a funny joke I will not reply, "LOL... LOL!"

I will do my homework the night before. Not 20 minutes before it's due.

I resolve... I resolve to... I resolve to, uh... I resolve to, uh, get my, er... I resolve to, uh, get my, er.....!

Waiting...

I called the Neuro this morning. Christmas was 3 weeks waiting on the labs. Results may be in. My nerves are shot. Agggggggggggg I hope they call me soon. The pepto bottle may be empty by the end of the day.

I called last week and missed them by about 45 minutes on Tuesday (they closed early at 3). They were closed Wed-Friday. I begged the poor woman on the phone to tell me yes or no. She said, mam I can't give you that info. I said- just tell me if it says Angelmans or not. I won't tell anybody I swear. It's between you and me. No luck. :(

Please let the results be in. We see the neuro, geneticist, urologist, and surgeon next week. I believe there's 1 more dr we see as well. Pray for us to survive them all!

Peek-A-Boo

Put my little men together and they either fight or destroy :P Here's a peek at 'destroy'.

I've given up on cabinet organization. This has become a daily thing. Any cabinet with 'dangerous objects or breakables' have locks on them. So, we let them have fun with these- the mess isn't all that bad.....

Oh, Logen!

Adam was power-washing the 'graffiti' off of our fence last month. The boys were playing outside on the opposite side of the fence. Logen walked over to where the water/pieces of fence were being shot through. He ended up covered! He thought it was hilarious.
Yes, Mr Logen's eyes get him out of alot of trouble too! Look at his lashes. I would love to have those!

Bread Thief!

Watch out! There's a bread thief on the loose!!!
Look at those eyes. And, now you know why he gets away with alot. He's so rotten!!!

Missing Uncle Stevie

This was the 1st Christmas w/o Uncle Stevie (he died in a tragic motorcycle accident Sept 18, 08) I just looked through my lil sister's facebook pictures- one of my Aunt, Dad, & Papaw. I sat there thinking something is missing. Uncle Stevie. Just isn't right. I hear his voice, "Jessie, how's it goin'"? I'm afraid I'll start to forget my childhood memories of him. The way Logen took to him the 1st time he met him. (which was odd- I thought he'd be scared of him the way my littlest sister, and most little kids, was)

I spoke with my Aunt Pam on Friday. She called to say hello. She didn't do Thanksgiving with 'our' side of the family this year b/c she said it was just to soon. She told me she didn't stay at the Christmas get together very long b/c Uncle Stevie wasn't sitting at the end of the table where he usually does. And, everybody looks like him. And talks like him. It's true. There's something about my Dad's side of the family- you can just tell we are related. She started crying on the phone. I can't imagine what loosing a spouse is like. And a Dad since my cousin lost his father. I just keep on praying for them.

We will see them soon. And, I can't wait to give my Aunt Pam and big 'ole hug. Logen's week long Doctor's appointments are coming up- we will be about 45 minutes from my family then, so hopefully we will get to see them all. And, do a 'late Christmas'.

Will you say a prayer for Aunt Pam & Tyler please. Thank you :)

Thank you all for your continued prayers for us all. We are so very appreciative. Thank you cannot be said enough.

Suspected Tumor

I've been 'Internet-less' for the last few days.

I went to my Cardiologist Tuesday. My Echo Stress test/EKG's have made my Dr suspicious of a tumor on one of my kidneys. I have a CT Scan setup for Tuesday and a 24 hour urine test this week. I see him again January 21st for results. He is going to refer me to a electrophysicist? Something about 'burning/laser' the 'switch' in my heart. I was a little tuned out on that. He used the 'light switch' metaphor. A heart is like a light switch. A normal heart switches on 60-80 times a minute. Mine changes from 90 to 160 w/o much exertion.

My mom had a tumor the size of Parker's head (at the time, about 5 months old) last year. It was located near her left kidney. They could not save her left adrenal gland either. When I mentioned this (after my Dr told me he is suspicious of a tumor) he got a concerned look in his eye and was more adamant about getting the tests done sooner.

I'm just numb. I think God is trying to tell me something. I go through everyday thinking 'what else is going to happen. I don't think we can possibly handle anything else.' Maybe I need more faith. Patience? I'm not sure. I'm numb and I'm scared. I'm praying that 2009 is a better year!

Angels Among Us

We do not know who they are, but there really are Angels out there- people who truly care about people and are doing great things in this world. We know, we've experienced it. And are amazed. Overjoyed. Thankful. Speechless.

Friday night when we came home from a family Christmas get together with friend's- our Children's "Christmas" was on the door step. Somebody had anonymously left 2 huge "Santa sacks" of gifts (one for each boy), a box of pull ups, wipes, 2 Wal-Mart gift cards, a card and a kind letter. The letter explained that whomever this was had learned of Logen and of our family and our prayer request/Logen's medical condition & They just wanted to let us know they were praying. Wow.

Adam & I were teary eyed and speechless. December has been a rough month not only b/c of the recent 'findings' but, Adam didn't get paid for the week we were in the hospital with Logen. Christmas was going to be 'tight' this year. If it weren't for my Mom and some good friends, I have no idea how we would have even made our house payment. We've emptied our savings paying St Louis bills and daycare. Coming home to this blessing was a huge relief. We are so incredibly thankful. I hope whoever did this is reading, b/c we want to thank you. There are not enough words in the world to show our gratitude. Because of you, our boys will have gifts to unwrap on Christmas morning. And, we were able to go to Wal-Mart tonight to get some much needed items!! We were out of essentials like milk and bread.

THANK YOU. THANK YOU. THANK YOU. Your prayers alone are enough. God Bless You.

KEEP ON PRAYIN' FOR LOGEN

ER: Parker P*N*S Injury

Here's a recap of last night's ER visit-

Nurse: Why are you here?
Me: My 2 y/o's penis is black on the end and it's swollen. We are worried about him.
Nurse: How did this happen?
Me: Uh, my boys were in the shower with their dad and I was standing right there, and well, we aren't really sure- Parker just stood up, grabbed his privates and was screaming that blood-curdling scream. We put ice on it, that didn't help the swelling and it certainly hasn't helped the pain.

* Nurse picks up the phone and expedites us to a room. 2.5 hours later, he is given Motrin (for pain/swelling) and the doctor puts a 'pee-pee' bag on him. He tells him that if he goes pee he can probably go home. He just cried and cried. He kept saying, 'pee'. Adam & I were hurting for him. After he finally went 'pee', he said- 'I pee, ona go ome' When the nurse came in to take the bag off- Parker made sure to tell him he 'pee' and he 'ona go ome'. The Dr came in and said there was no blood in the urine! Yay. It took an hour to d/c us.

He's got a hematoma on the end and it's still swollen. We've thrown every toy that was in the bath tub away. I am still not sure what he did. It looks like it got pinched on something. Logen couldn't have done that much damage b/c of 'hand control' issues. It had to have been a toy when he was sliding on his tummy. 2 adults were standing right there with our eyes on the boys and neither of us saw it. We feel horrible! Poor little man struggles with going potty and doesn't want to be washed or wiped. We are suppose to give him Motrin for the next 24 hours (or 1-2 days as we think he needs it).

It's just one thing after another, 'eh?!

KEEP ON PRAYIN' FOR LOGEN!

Dishwasher Mishap

Pictures speak louder than words. Somebody put to much soap in the dishwasher... It turned out to be great bubble therapy. And, a good way to clean the floor!

How Many Times A Day Can A Mom Say...

Sunglasses do not go in the potty.

Please don't eat food out of the trash. That's yucky.

Please don't take your pants off.

We do not bite. We do not hit. I think you need to visit the time out rug.

Please don't hang on the fish tank. You are going to scare the fish.

Let's not feed the fishies your toys. Or toilet paper.

No climbing on the table, thats where we eat our food.

* Why is it that {My} kids listen to everybody, but me? I found myself saying the above phrases more than once yesterday. *

Parker's "Due Date"

Is it weird that 2 years later I still think.... "He should be 2 today and not 6 weeks ago?" I used to think it was odd for people to ___ (ah, snap. I totally lost that word in my head) in the past over something like this. Then we fought the NICU battle and had a 6 week old on our due date. Not so crazy anymore.
My boys are so CUTE!!! :) I think I posted somewhere I'd still be posting Florida pictures in December! Mr Logen picked out his clothes, it was his birthday!

I'M DONE! I'M DONE!

I took my last final today! I cannot tell you the HUGE feeling of relief today brought. (After my exam, of course!)

My French grade has been posted.... I got an A!!! My Theatre grade was also posted, also an A!

I feel accomplished. I worked my booty off!!!!

Side Note: I go in Thursday for a Holter Monitor & I see the Cardiologist Tuesday. The heart med I started has done ZIP! I've been having some funky chest pain that will go into my shoulder, creep to my elbow and then make my fingers tingle. Apparently the Heart Center doesn't read your stress echo's until the day of your appt? The nurse from my Internal Med Dr called & said they were going to see if they could get it read before next week. We shall see.

Keep On Prayin' For My Logen!

"It's Just Not Fair...

... that he has to have so much to help his little body work right." A, Logen's Daddy

Logen was up with some MAJOR constipation tonight. It lasted over an hour before even a suppository gave him relief. He's on Miralax daily- but it must be time for a dose increase. I wonder if the pediasure has any role in this? He was just pitiful. He couldn't lay still, his little face was all scrunched up, he was crying, his tummy was tight- and nothing we were doing was helping. It's awful when you watch your baby hurt and there is nothing you are able to do to comfort them!!! I know every Momma out there will agree with me!

A Logen Story, Prayers Needed!

The last 5 years have been a whirl-wind. Logen has certainly kept us on our toes! After spending a week in Children's at the beginning of December 2008 & begging you all for prayers- a blog friend said she'd create a 'Pray For Logen' blinkie. I will post this link so that you all can add the blinkie to your blog or where ever you'd like. You can also link it to our blog/this post.
So, I wanted to sum up in a single post why we are in desperate need of prayers.

Logen was diagnosed with Cerebral Palsy January 31, 2005 at 18 months old. I will never forget that day. Just a few hours before he had had an 'abnormal' MRI. Our Neuro didn't come out and say CP, so I asked her. Her exact response was "You could say that". So we left, And I cried the entire 4 hour drive home. I was not ok with the Dx. Honestly, I have never accepted it. As Logen's mom, I had a little 'tug' that said, nah- this can't be it.

We searched for different Neuro's. I spent 18 months working to get into St Louis Children's Cerebral Palsy Center. The very first time we saw this Neuro she said, This is atypical CP, if CP at all. My 'tug' was partially confirmed. She'd never had a case quit like Logen's. Infact, after spending nearly a week in the hospital at the beginning of this month- we heard about 10 Doctor's say this. My sweet baby boy is a mystery. Our 'main' neuro, we'll call him W, was walking out of our room at one point and said "He's definitely a mystery and we will do our best to figure it out. There's a 50% chance we won't. But, we will be happy to refer you anywhere we need to." I said, ok- we'll go to Guam or Sweden or wherever we need to go. We've been passed from Dr to Dr trying to figure this out over the last 4 years.

The 2nd MRI, 100% normal. You know, you pray and pray for a miracle. We prayed for a clean MRI. We got it! Praise God. But, now... what? We are looking at a 'worse' (I hate to say that b/c who wants ANY dx period?! I know my SN friends know what I mean though) dx. He doesn't speak. He aspirates. His tone is abnormal. His EEG is constantly 'abnormal' and looks 'worse' when he sleeps. His hands don't function as ours do. He started having seizures at 4.5 years old. They have gotten worse in the past few months. He takes medication 7 times a day. He is also not growing (he's been in the same size clothing since before I got pregnant with Parker in the spring of '06) and has not been eating much. We are seeing a nutritionist and have started pediasure. Something is 'not right' and we have got to get it figured out!!

Have you ever prayed that your child has CP? That it's something that doesn't affect your child's life-span?

We are looking at the possibility of Angelmans/Prader-Willi Syndrome. It's a chromosomal mutation, deletion, or something on the 15th chromosome. I've had some of our therapists say, no- I've seen kids with this and it doesn't fit. Some said, maybe. I don't know. We've done research. The infant stuff fits. Not all of it does. But W said not everything does fit Logen, but it's a place to start. We are waiting for other genetic tests and this test to come back. We see a slew of dr's in January. I cannot wait for these appts.

We need prayers b/c the future is uncertain. We don't want it to be Angelmans. The info W gave us is 'not-so-great.' Never speaking & shorter than average life span are a few less than desirable characteristics.

For now, the CP dx has been taken away. Seizures are the primary dx. Developmental delay is second. Along with 3 or 4 other dx's.

We are desperate for prayers. And, of course answers. I've known all along it's not CP. That Dx has never felt right.

KEEP ON PRAYIN'

So It's Sunday...

My French final went well. I found out I only needed to make a 65% (which is a D) on the final to keep an A in the class. If I'd only known that BEFORE Friday morning, maybe I wouldn't have studied so much. Nah, doubt it. It's a good feeling to have knowing you can nearly fail a final and still have an A. :)

I got about 3 hours of sleep from Thursday to Saturday. (I am so thankful for a hubby that let me come home and sleep till 4pm yesterday afternoon!) I had an all night panic attack Thursday night freaking out about Saturday mornings play. I don't think I blogged about it, but our final was a 10 minute play. My teacher selected me as the Director. It was more than stressful as we had to have lights, sound, the whole 9 yards. I spent about 5 hours with the group Friday night rehearsing and was up most of the night doing things (like doing props and writing papers that certain members weren't going to get done- for that reason, I do not like group projects) I felt like I ended up doing most of the work myself. I am SOOO glad it's over! One person didn't even show up to our final rehearsal... Ahhh. I could go on, but I won't! I'm not sure what our grade will be, but I hope to keep my A.

I haven't studied like I should for tomorrow's (7:30am) final. I'm avoiding it now. I found out about 2 weeks ago this very same class is going to transfer as something I have already taken elsewhere (and gotten and A in, this go around I think I'll end up with a B. :(. This makes me sad)

Logen is doing well. We are taking one day at a time. Both boys have been sick in the last week. Snot, fevers, etc. Parker keeps drinking insane amounts of liquid and making himself vomit. Let me tell you how much fun that's been! Woo hoo. Diarrhea too. Poor kid. Both kiddos went to see the ped- he found nothing wrong with them, illness wise.

One of my blogger buddies is going to make a "Pray for Logen" blinkie. I will post it soon (I have to get the info to her first) This is for me, as well as anybody that wants to post on their blog saying they are praying too. The more prayers the better!!

I have some major 'stuff' going on (besides precious little Logen stuff), I was going to not blog about it. But, I think I want some advice. Or atleast your thoughts. I'll get back to you after tomorrows final. I gotta go study... b-o-r-i-n-g

Thank you all for your continued prayers.
Love & Hugs ~ J

Another Prayer Request

I hope I'm not pushing it by asking for more prayers :P

A very dear friend, Melissa (Joshie & Mia's Mom to those BBC Moms reading) lost her Mom 7 years ago, tomorrow. I cannot imagine. Please keep her in your prayers. Thanks!

** Logen hasn't had more than 1-2 seizures per day in over 2wks... but I am HATING the Keppra. Still not eating & the PT noticed some 'not so great' changes today. Will update after tomorrow's French Final. **

KEEP ON PRAYIN' FOR LOGEN

Santa Logen

Funny little Logen went shopping. A & I were looking the other direction, discussing Christmas Lighting. Mr Logen was pulling on my coat tail, we both turn around and see "Santa Logen". Not only did we about fall over laughing b/c it was completely unexpected- we were so proud that he got the hat off the rack and managed to put it on his head PERFECTLY!!! I hurried to grab my phone for pictures. He was so stinkin' proud of himself. He wore it all over Lowe's. It was so precious.

Finals Week...

My lil' cousin said you can't spell stuDYING without dying. I lol'ed and then stole her sentence.

I have finals Friday, Saturday (at 7:30 AM!), & Monday... Oh, help me!

With everything going on in our lives, finals are coming at a really bad time. I am having an EXTREMELY hard time concentrating on studying. Pray for that too if you can!

Thanks for the continued prayers and kind comments. Love to you all!

The "Little People" Who Are Praying...

I've gotten 2 messages today about young children who are praying for our sweet, beautiful Logen. As for prayers, I think we've started a Logen Movement. I cannot THANK YOU all nearly enough for the prayers. There's just something about the children who pray and they way they do it that tugs at my heart.

One of our little therapy buddies (who is near Logen in age) asked God "to take the yucky stuff away and make Logen healthy!!" Thank you little man J!

A mom & her lil' guy (who we know IRL) sent a message saying they pray for Logen every night. Thank you guys.

Please don't stop praying for Logen. Please.

Keep On Prayin'

Adulthood, What If?

... Many affected people need to live in a residential (adult foster care) group home when their parents are no longer able to care for them.

With children: Support in the home, a contact family or short-time respite care homes may provide valuable relief and rest for the family. The family may also require assistance in coordinating interventions.

With adults: they require continued support from a treatment and training center. They also need special housing, offering assistance in managing daily living skills and organizing activities.

I've looked and researched (I know, I said I wasn't going to do this) every possible syndrome, etc we discussed. EVERY one of them mentioned the above. It's heart breaking.
One of my best friends & I were joking (a few weeks ago) about our children, she'd had a rough day w/behavior, etc. She laughed and said something about 'when my daughter turns 18, she is so on her own!' If it hadn't have been this particular friend (or one of my other friends who have SN kids) I think it would have bothered me. I laughed back and said something like yes, Parker will be too!

How do I keep my sanity through this all? How do I make it ok for everybody? How am I suppose to feel and react? I don't even know. I've cried so many tears I don't think I can cry anymore. I'm becoming numb. And, my wonderful husband is Mr Optimistic. (Thank Jesus for him!!!) I wish I knew how to look at the bright side of everything like he does. And, what about Logen? What about HIM?

And, there's always that question of: What if he doesn't make it to adulthood?

So, we just ask for you to....

Keep On Prayin'

What's In Your Stocking?

A & I had a "stocking' conversation last night. I love this man. He is always thinking about me & the boys. (except for that 1 week outta the year when he leaves us for the deer woods!)

J: Can you name a few little things you might want Santa to put in your stocking?
A: An Incredible Hulk Action Figure!!!!!!
J: Huh? (Pause. Think about it. Realize what just happened. Get it-> Logen has been eyeing a Hulk action figure....)

In the botton of A's sock, I bet Santa will bring him something green this year.

KEEP ON PRAYIN'

The Discharge....

Where do I start? Oh, Lord- I pray- help me.

Principal Dx: Seizures
Secondary Diagnoses:
a) Developmental Delay
b) Cryptorchidism BL
c) Behavioral changes/aggression

Procedures: Video EEG, CBC, RFP, Endocrine Labs, bone age xrays, microarray, chromosome analysis, The Very Scary Test I'm not ready to reveal to the world just yet

- If Logen has a few seizures in one day, we load up and head back to Children's for another stay- I have a note from our Neuro to hand the ER staff so that our admit process will go much more smoothly
- We are slowly discontinuing the Zonegran (over a period of 3 weeks)
- We are starting pediasure 3 per day (and are working with a nutritionist)
- Started b6, hoping it will help with the aggression/behavioral changes brought on by the Keppra
- Several clinics to go to in January.


Let me start here. THEY TOOK AWAY CEREBRAL PALSY. Just like that. Bam. It's gone. For the last 4+ years I have been emotionally trying to figure out how to be ok it- this 'brain injury'. And, now- they just take it away. Wow. I've meet some great folks b/c we had children who were 'alike', so now what?
We thought we would be excited about 'getting rid of CP'.
Oh we prayed for a miracle, that he'd just be cured and not have CP. With whats been discussed now, I'm praying FOR CP. It just sounds better. Nothing sounds perfect (out of the box we are 'getting' to chose from)
I don't get it. Why Logen? Why my baby? What did he do wrong? What did we, I do wrong? This disease/syndrome whatever it is- is most likely maternal. God, please- you're really going to have to help out if that is the truth. I just don't understand this all. I'm trying so so so hard to keep my faith in the Lord. I find myself closing my eyes and looking up whispering "God Please, please, please, please" about 1,000 times a day. I'm sorry this doesn't make much sense. I start to ramble when I think about this.

Blog Family- Keep on Praying. Please. We all need it. More than any of us, Logen does. Logen NEEDS every extra prayer there is.

Thank you all for my sweet messages. I love the comments, the texts, the emails- don't stop sending them. I need to know you all are still out there- still praying for us. It means so much to me. More than you can imagine, it means that much.

Love you all~ Jess

KEEP ON PRAYIN'

Desperate & Begging For Prayers

PLEASE Blog readers- PRAY for Logen. Ask your neighboor, your cashier at Target, the lady that walks the block on noon every day, your blog readers- whoever you can think of- we just are in need of some MAJOR prayers.

What are testing for now and what several Doctor's have spoken to us about is a genetic disease. I'd rather not mention the name at this point. The doctor's have given us info about it and we are trying not to research the web, it can be your enemy in some cases. A few of it's whatevers are- nonverbal (forever), shortened lifespan, seizures, it goes on to break my heart.

Blog Family, I dreamed (a nightmare!) I had to plan Logen's funeral last night. And inform people he was gone. I didn't sleep and I just cried. Please please pray with us- we do not want this to be what Logen has. The outcome is not desirable. A Mother is not suppose to outlive her child, you know?

I am Begging you all to pray. I don't know what else to do right now. The tests will take 3-4 weeks to come back. We meet with the Geneticist, Neuro, Urologist, and Surgen in 4 weeks. I may go crazy until then. Pray with us and for us. We love Logen and can't imagine life without him. I am so incredibly scared.

Major Prayer Request- Logen

After odd behavior, seizure activity, a visit to the ped, and several phone conversations with his Neuro's nurse on Tuesday- it was decided that Logen needed to be admitted to the nearest Children's Hospital. (3.5 hour drive that took us about 5 hours)

He is still in the hospital. We've seen about 6 different doctor's today. The "main" Neuro spent over 2 hours with us in one sitting. At this point the testing he is doing is extensive. He is hooked up to an EEG machine. So far, we see constant brain wave abnormalities. When he was sleeping last night it was 'worse' or 'different'. He gave a specific term which I cannot remember. There's been so many 'new' words lately they are all running together.

I have mentioned the MRI differences in previous posts. The 1st MRI was abnormal. It was confirmed by several doctors that looked over both of them today- the 2nd one is 100% NORMAL. There is NO brain injury/scar, etc that shows up on an MRI. What this means: Yet another Dr that said- this is NOT Cerebral Palsy we are dealing with. We are not sure what Logen has. (I was asked if I'd ever talked to other CP parents or seen other CP kids. If I'd noticed differences. Um, yea. How long have we been saying this now?!?!?) We leave the CP dx for medical/treatment reasons I believe. B/c at this point we don't have a clue what it could be. They took 30cc of blood from little man this afternoon, who was pretty pale afterwords.

We are beginning with metabolic and genetic testing. Some of which have already been done. We are re-doing. We did an X-ray to show the bone age. Urine tests. I don't know. I haven't slept in close to 48 hours- so things are beginning to run together.

Our list of referrals thus far: Geneticist, Endocrinologist, Surgeon, Urologist, Neurogeneticist

Please pray for Logen. It's a very scary thing to not know what's going on with him. We've known this for a while now, since it's not a new thing to know 'I don't think we are dealing with typical CP or CP at all'.

Just Pray Blog Family. Just Pray.

The Letter A!

Erin sent me a this:
The letter A. I need to name 10 things that start with a letter A.

1) Applesauce, unless you are Parker and then you would say "Ass-e": Logen gets his seizure med mixed in applesauce (100% all natural, no sugar added of course!)

2) Angel: the Guardian ones that help us make it through our day! Or the one on top of our Christmas tree.
3) Airplane, the boys first time on one. Click on the link to view pictures (theres about 8-10). I can't copy & paste them for some reason.

4) Asparagus: 1 of Logen's (& mine) Favorite veggies!

5) Ant: Little bug that always manages to finagle is way into the house during spring. Parker got pretty good at ant squishing in Florida this year!

6) Automobile!!! The boys favorite toys include anything that has wheels! We also spend a great deal of time in our Automobile!

7) Arm: There are 8 arms in the above photo.


8)Animal: There are 3 Animals in his house! I think Monkey would be an appropriate label for my little men.

9)A...: The month Adam & I got married.

10) A...: The month our precious Logen was born. (This picture also says, Yay! We made it through 10 A's)

**If you are interested in blogging a letter- comment & I'll email ya one!

Logen- No Food?!

I'm not sure what's going on with Logen now. I don't know if this is a side effect of the Keppra of what. He's not eaten breakfast OR lunch since he's been home for the break. His teacher says he eats at school. I'm skeptical now. What they say is eating may not be eating to me. So, I'm calling the Neuro first thing in the morning to ask. Our last appt she brought up his weight gain- and some concerns. He's been in the same size since before Parker got here!!! Jan 2006 I remember buying some pants he can still wear. We increased the does to 2x/day on Thanksgiving- and we've seen no seizure activity since! (YAY Logen!) We shall see on the eating. Say a prayer for the little guy. And his Momma. I've been having some nasty chest pain the last few days. :(

Logen is now up to 6 medications a day. He's 5!!!!! This is insane!

Blog Safety Changes

I've read some things recently on Blog Safety. I've changed my blog's address- Splendid Mayhem is the new name. Also, PLEASE do not use my last name when posting- or leaving comments. If you have me on your blog as a 'blog friend', please take my last name and/or location off the list. You are free to use Jessica or the blogs new address- but do NOT include the last name. I will be editing many things in the next week for safety purposes.

I have also changed my Blog Friends list so that it does not include any last names.
Thank you for your cooperation!

Be Patient, I'm "Constructing Ideas"!

My page is under construction. I'm slowly going to be making some design changes!

Hope you all enjoyed your Thanksgiving!

100 Mommy Card Give-Away

Anelys @ 3 Little Flowers is giving away 100 FREE Mommy Cards in honour of Black Friday! All you have to do is go there!!!

You dont need to buy anything... Just make a comment to participate with the colors that you will like the card to have and how many kids you have... There are several ways to get to comment more that one time, so go ahead and read about it. (I added an extra entry by posting this for you to read!) Hmm... maybe I should have been selfish and not told you about it... hahaha

Check out some of her other designs! She's got some totally cute stuff.

Participate today! Ends Friday 8pm EST!!! Winner will be published on Saturday at 12:01am!

Updates On Us All

Things have been rough for the last few days! My hospital stay was less than desirable. I've never had my blood drawn that many times. I woke up at 4am Saturday to the lab tech rubbing my arm with alcohol. I gave up after that. And, if a respiratory therapist comes in to do an ABG (arterial blood gas) or 2 or 3 RUN! Those suckers hurt, left my arm in pain for a while (so much so I couldn't text or hold up my book)

So far- we know nothing more than we did going into the hospital. And, I'm home. I went in today for the echo stress test. With the holidays we aren't sure when the results will be given. They did start me on a heart med today just to see if we could control the fluctuations. My HR climbed to 197 today during the test. The lady seemed a bit surprised a otherwise healthy 24 y/o could manage a HR that high. Congrats to me... haha

I went to Wal-Mart with Adam and it was terrible. I couldn't see 10 feet in front of me. The store began tunneling in on me, things got blurry, and I felt 'floaty'. It's a horrible feeling to have. I can't exercise, I can't go to the store- so we have to get this figured out soon. 'Cause I've got things that I've gotta do!

So, that's what we know. Nothing. I know it's not just 'nothing' when my actual Doc (and not the nurse) calls to check on me and says she didn't sleep last night b/c she was concerned though.

Mr Logen is doing well on the Keppra. We've not seen a seizure since we started it!!! YAY! Still planning on the videoed EEG in December. He's enjoying his break and staying home! Those 6am mornings were wearing on him!

Parker is busy being Parker! He's calling Adam "Adme" and me "ess-e-ka". He's a little mess. At dinner tonight he looked at Logen and very clearly said (and know, nothing he's said has been 'clear') "Bubba is funn-e" We got him on video last night dancing to Christmas tunes. Priceless. Logen was chillin' eating Lucky Charms- we got that on video too :)

Adam is working like a dawg. It's 'peak season'. We won't know who he is until after Christmas unfortunately!

If it weren't for my drama, I suppose things would be fairly calm here. It's always something, isn't it?!?!

My Doctor decided to admit me to the hospital today (Friday 11/21). My heart rate shot up to 160 this morning and my oxygen has dropped to 74%. Will update soon.

Jessica HR/O2 Issues

I went to my Dr today for what I thought to be a follow-up. I ended up in the hospital having an emergent CT Angiography.
I've been having problems with shortness of breath (to the point I can't talk when in motion), chest tightness, dizziness, a floating feeling. It's increased when I walk up stairs, several feet, or get up and down. It's been going on for about 2 months. I wasn't concerned necessarily, but it's not getting better and ridiculous that a 24 y/o who doesn't smoke and is not overweight can't walk up 5 stairs w/o feeling like my chest is going to explode. So, I thought I'd tell my Dr today. Apparently it's not a good thing.
We did an EKG, chest xray, and labs in office. All were normal. (Haven't had an xray since my surgery in April- that was interesting to see!) So, before I left she put a monitor on me and wanted me to walk around to see what my O2/HR were. We walked about 15 steps and my HR went up to 129 and my Oxygen dropped to 80%. Needless to say she wasn't going to let me leave then. She called the hospital and sent me over there immediately. I've not had the contrast experience before and mine wasn't a great one. My Dr called me herself an hour after the test- I do not have a pulmonary embolism! So, she is going to schedule a Stress Echo-cardiogram and wants to do a Holter monitor for 24 hours. With the rule that if things get worse tonight I go to the ER.
My Step-Dad is a Respiratory Therapist so he brought over his little O2/HR monitor for me to keep a log for the night. My Oxygen has been crazy as well as my Heart Rate. O2 has been anywhere from 74% to 99%. And my heart rate goes from 98 to 125. (My average in the last year and a half has been 80)

So, would you keep both Logen and I in your prayers as things have gone nuts in our house?!?!? Thanks :)

More Seizures = More Meds

Logen: last night was strange. He had a (or several, not really sure) seizure lasting 45 minutes'ish'. He would go in and out of it. Out for 30 seconds (bobbing head, stiff arms, just basically he wasn't 'there') and back in for a minute. Repeat about 1,000 times. I lost count. We gave Klonopin, again. This makes him (and Adam & I) crazy. It irritates him. He is unable to sit still. He went on a cleaning spree and put every pair of shoes in the living room away. He picked up toys. And he did this for 20 minutes. (Logen doesn't just pick up things like this. He's usually asked to do so and still has to be directed) Another odd thing (about 15 minutes after K admin) he was standing in the shower and had a BM. And, he was completely unaware of what happened. When Logen has an accident (such as urinating out of a pull up, 'shower poo' is not an ordinary occurrence) he may not always know it's coming, but he knows once he's done it and he gets Adam or I's attention (or tries to clean it up himself). He made himself a human canvas. It was cute and he was very proud of himself. He sat in the living room floor with a pen and colored all over his leg. We considered it therapy, he had many vocalizations! We did get pictures and I will post when I upload them. He was up and down most of the night.

I spoke with the Neuro's office this morning. We are going to go back down on his dose of Zonegran (3 in the AM/4 PM) and add Keppra. We will do 1.5mL for 7 days, increase to 2x/day for 7 days and then give full report to the office to see where to go next.

Logen has a 24 hour minimum videoed EEG scheduled December 16th. We haven't quite figured out the logistics since Parker won't be allowed to camp over night and neither parent wants to leave Logen...

French Test

My 4th "big" French exam was Monday. I was really concerned about it... I think I did fairy well :) I ended up with a 95! There's nothing like getting a test back with very few red marks! Now, I'm worried about yesterdays exam, this afternoon's exam and this mornings quiz! I don't like waiting for test grades!!! Yesterdays was a fill in the blank/short answer.... that should be interesting!

Logen Update

That look in your child's eyes when they try really hard to do something their same age peers are doing and can't hurts. Logen tries... he works very hard. He is such a motivated little guy. And, that glimmer in his eye when he just can't quite get it crushes me. I hate it for him.

Update~ He had about 4 seizures between 4:30pm and 9:00pm. We ask for your prayers as we are working on figuring out whats going on. I spoke the neuro nurse several times today and yesterday. We are trying to figure out how to get his videoed EEG done ASAP. The neuro feels that we are no on the right med at this point, however- she doesn't want to change it w/o seeing ATLEAST 24hours of an EEG. I will update on this as I get more info. Continue the prayers!!! Thanks!

Increase In Seizures

We are waiting for lab results- if they are 'clear' then we will 'up' Logen's seizure med once again.

Logen had about 10-11 seizures from after school to bedtime Friday. We administered his Klonopin.
Saturday: around 5 seizures noted (hard to say since he doesn't sit right in front of us the entire time he's awake)
Sunday: 3 WEIRD seizures. A NEW form... we've not had before. He was sitting at the table and it was like he lost control of his neck. His head flopped back until we caught it and his body jerked slightly. His eyes were glazed over- he did not blink when we waved our hands in his faces. And, he giggled every time he came out of it. Strange!
Monday: 1 at school, several at home- 'weird' ones

Will update on this when I hear back from St Louis. I was impressed that the Neuro called to check on Logen Friday (I just listened to my voice mails this morning...)
I have a test I need to study for....

Our Fence Got "Tagged"

Sometimes after Adam left the house from lunch and the time I got home from getting Logen from therapy our fence was spray painted. I won't blog what my husband said b/c it's not the nicest- nor will I blog about what was spray painted b/c I don't want any publicity for whoever did this. It was sprayed in 2 spots though. The police that came and took the report said to get something painted over it immediately. He came from a big city where gangs were a problem and they told them to get paint over 'tags' quickly b/c a gang who sees that their sign is left up for lengthy periods will likely 'tag' again. He assured me that this is not something they see very often and their is no 'reported' gang activity in our town. Somebody needs to put these kids in an after school program or something. Spend time with your kids people!!!! What do you bet the parents didn't have a clue where or what their children were doing?!?!?!

You can bet I was knocking on all our neighboors doors questioning them- I just wanted to know if anybody saw anything! Why we got to be the lucky family this happened to... beats me.

* Side Note- Parker laughed when the cop came over and Logen was scared of him.

Just add this to my 'crap-o-la to do list'. It's not near long enough. Anybody have anything else they want to add for me to do?

Maternity Clothes & Christmas Decor

Yesterday Adam was getting the Christmas decor out of the attic. He yells to me as he's going through plastic tubs- here's an entire tub of Maternity stuff. What are you going to do with it? And, the crib and baby stuff?
I was like, what did you just ask me?! Are you serious. I don't wanna go there.
I didn't bring it up again after he said it. I didn't think my unstabable-self could handle it quite honestly. I chalked it up to 'he's a guy, and they just don't think like we do.'
But, really- what am I going to do with all of it? I don't want to let it go b/c 'what if' that miracle happens..... but, then do we really hang on to it forever?

(More) Kinesio Taping

We taped the little (big!) guy up today! I haven't posted pictures of this in a while, so I thought I'd post a few. I used my phone, so excuse the horrible lighting. I guess we are 'ghetto' b/c we don't have fancy-schmacy flash cameras on our cell phones.

I found a fairly interesting article about Kinesotaping for Oral Motor Control if anybody is interested, you can find that here.

Click here to view the 1st post made about Logen's taping experience. (July 2007)

I LOVE this stuff. We have seen some amazing results with the tape. When his pointer finger and arm are taped- the pointer finger is extended and he is able to 'point'. It is BEAUTIFUL!!!! He is so proud as well. You should see him walk around a jabber as he points to things. And, how could you not love this little guy?!

Thank You

Just wanted to thank you all for your kind, encouraging, supportive words. It really means ALOT.

~ Jess

Broken Heart & Swollen Eyes

Emptiness, shattered dreams, anger, fear.... that's how I've felt for the last 24 hours.

I'll start way back.
No period in October, late period in November.
Major pelvic pain in October- discovery: cervical infection. Treatment: 10 days of antibiotics.
October: nausea, vomiting, smells making me ill, a *bump* in the belly (nobody else noticed, but I saw me naked- so I did) I just *knew* something was different.
OBGYN appt yesterday: Positive pee test.
Ultrasound: Nothing. Uterus, a piece of shit. Swollen, can't keep a pregnancy piece of crap uterus.
Left with a script for an antibiotic (b/c of swollen uterus and I guess when you m/c they sometimes put you on an antibio) and diflucan in case it gives me a yeast infection. Wait to lose 'baby'.
Last Night: grief, sadness, pain (physically, emotionally)
This Morning: Woke up with pelvic pain. Pushed through it. Got Parker to his school. Went to bathroom b/c I felt something "down there". Sharp pains, big goopy, clumpy blood. Pain. Tears and pain. And, 1 broken hearted Mother who hurts. And I wanted to scoop it up and put it back in my sucky uterus and tell it to stick!

Anxious, Nervous, Scared

I'm freaking out about today's appointment.... would you keep me in your prayers today?

I have a test in all of my classes next week- getting ready for Thanksgiving break. I love it when they hit you 3 days in a row. :(

I gave Logen his Rx cough med and Motrin last night- no fever this morning. He still has a nasty cough and horrible, icky snotty nose. Poor Parker has it too! He's got another ear infection! :(

Parker's well child visit last Thursday turned into a sick kid one when daycare called 1 hour pre-appt and told me he had fever. He had only been off his antibiotics from the last ear infection for 7 days. I think tubes are in his near future!!! He's made it up to the 26 lb marker! I'm 100% that is not accurate, I argued with the nurse b/c less than weeks before he was 24lbs naked. At 2, they weigh with clothes on. So, on the charts it appears that in less than 2 weeks time, he's gained 2 lbs. Oh, well-- charts don't matter, right?!

Me!

Today- where shall I start. Tears, lots of them. It's just been one of those days. Everything has gone terribly wrong. Things I can say, others I can't. Being a single mom right now isn't making it any easier!

I need Microbiology. The community college has 7 sections all are closed. I looked at 2 pm today and find this out. Registration STARTED today. I called the science dept. She pretty much told me I was SOL. They purge students for non-payment January 7th, I might have luck then. U of A has 1 section of Micro, which I am signed up for but the problem is the lab section is from 4:30 to 6:20PM on Monday and Wednesday.

Other schedule conflicts- there are 3 other courses I HAVE to HAVE THIS semester or completed before fall. Guess what... they offer them once. First come, first serve. You don't pick the times- you go on a list and if you make it in, well- you'd better be happy. I made it in- not real sure how we are going to work it though.
Problem with Class A: Monday 7:30 am (who will get Logen on the bus and Parker to school? I have to leave by 6:15am to make this one! Adam leaves at 6:30 to make it to work)
Problem with Class B: Thursday 3-4:50 (I probably wouldn't get back to my van after my walk to the bus stop and bus ride until nearly 5:30, let alone a good 45 minute drive home. Who will get Logen off the bus and Parker from school since they close at 5:30?)
No Problem with Class C: Thursday at 1-2:20


I jacked up on my make-up exam today. I screwed up authoritarian and authoritative. There were about 5 questions about that. The test has 50 questions, worth 50 points. You miss 6- automatic B. I needed to miss no less than 6 to keep an A. A B will drop my GPA. I REALLY, REALLY, REALLY wanted a 4.0 this semester!!!!!!!!!!!!

A few other issues I can't mention. Please say a prayer for us (me). I have a Dr's appt tomorrow afternoon that I am VERY nervous about.

Just been a crappy day. The people on the bus at school today probably thought I was nuts. I tried so hard to hold back the tears- but I couldn't. I lost it and cried all the way home. Lost it even more when I walked in the door. I just need some prayer. Thanks!

Day 6

And Logen STILL has a fever. Low grade today, 99.9ish- still thick, nasty, green snot. Ick. We shall be calling the Dr tomorrow!

Surviving So Far

Adam left for the woods Friday after work (so we have not seen him since early Friday) He's out there with my Step-Dad and best friend's Dad. He will return next Sunday. We've survived the weekend! Parker's started calling Adam "Daddy Adam" and gets very upset when we say daddy won't be home today. Logen is just truckin' through. He's got his Momma and Nana!!!

I Locked Logen In The Van

Poor Logen. Momma's so mean! Wednesday after we left the Dr's office (with just an Rx for a cough med b/c we still aren't real sure what's going on...) we went to Sam's to get Logen's script filled. It was extremely windy!!!! I had opened the van door, locked all doors, tossed my keys in my purse- which was sitting in front of Logen's carseat when the wind blew the script right out of my hand. So, I turned to look like the idiot chasing a valuable piece of paper across a parking lot. When I caught it, I realized the wind had blown the van door shut. Not all the way, but enough to where you weren't going to open it. My keys, purse, phone, Logen- everything was right there in sight! I just couldn't get to it. 2 cart pushers were near by so I yelled at them to call something. A manager came out and told me they'd called the fire dept. I made sure they knew he did have a fever and was prone to seizures (and we were in handicap b/c of his CP) I didn't want the FD lolly gagging and Logen to seizure- there would have been nothing I could have done. At that point, I would have broken the window.
I stood there making silly faces at him trying to keep him amused. It felt like forever until they got there to get him free! They had a lock smith behind them so they didn't mess the door up.
Logen did get upset when the fire men got there, they crowded around the door to make sure he was ok. Then, when they got him out he gave me the biggest snugly hug ever!

I've Been Tagged!

1) I take Metamucil caplets (up to 12 of them a day!) and they don't work for me. Just started Yo Plus Yogurt, fingers crossed it does the job! I know TMI!!! ;)

2) I don't like the person I used to be. (Jr High/High School)

3) I LOVE to decorate for Christmas. I'm pulling my Christmas suff out this week and starting.

4) I hate the words "brain injury". I cringe when I hear them.

5) I eat way to much junk food, chocolate included! Every single day around bed time I'll say, I'm going to start eating healthier and working out tomorrow...

6) I talk to my Mom on the phone atleast 3 times a day and we send more text messages to one another than I can count.

7) I HATE deer season. I'm a deer woods widow for the next 10 days. My Momma is moving in b/c my Step-Dad is taking off & heading south too.

Mama Laura tagged me. And as the rules state above, I must tag 7 of my pals. I'm trying to pick who I've not tagged before.

1) Barbara
2) Anelys
3) Erin
4) Ellen
5) Kiera Beth
6) Suze
7) Dawn

Something Is Just 'Not Right'

I'm not sure what's been going on with Logen in the last 16 hours, but- it's not Logen.
He had ravioli, asparagus, and tropical fruit for dinner- he usually has no problem with any of these items. He hasn't had a problem keeping food in his mouth in some time. His ''suck" (which is more like a chew b/c he hasn't developed that skill just yet) has not been well coordinated either. It's been a few months since he's dribbled (out both sides of his mouth) more than he's gotten in his mouth. He did have private speech yesterday (and he hasn't had that in a few weeks)- and oral motor work was done and hit pretty hard, but I honestly don't think that was it. While that does fatugue Logen, I am pretty certain it wasn't that. There's a difference in what went on last night and what typically goes on after oral motor hasa been hit hard.

Last night, Logen did not sleep well. He woke up with a 102+ fever, shakiness, very thick green snot, and a pitiful cough. I've been giving him mucinex 2x a day since Sunday b/ he started with icky snot then- and I figured that would help clear it out. Hasn't thus far!

He has a Dr's appt this morning. I'll update when we get home! He's eating oatmeal right now, and doing pretty good with it- but the milk this morning. Oh, that really concerns me.

I'm In Posting Overload Mode

What does that mean? That I have something I am avoiding. Like a psych test tomorrow. And a French Quiz. Ugh.

Zzzzz

I love catching the boys crash in odd places or funny positions!

An Eerie Feeling

Maybe I caught a case of the 'election day' blues. I got up this morning with the weirdest, eerie feeling ever. I was scared to put Logen on the school bus. I wanted to hermit with my family in my home (like the feeling after 9/11, when we all just wanted to make it home to Momma and sit in her arms- I was still in high school then- so, I wanted my Momma!) I ended up going against my gut feeling and sending the boys to school. I called my Mom in near tears after dropping Parker off this morning. I still haven't figured out what was going on... but, that feeling was horrible.

I had sent a text to a close friend who reminded me that our Lord is good and to keep my faith in him. I've kept politics off my blog, b/c really- I'm not that politically savy.
I do know that our nation is very vulnerable right now and I think that's why I was so upset. I do not like when I do not know what's coming next. I've had several conversations with God today. I've not prayed for one party to win over another... while I do have a strong preference, I'm leaving it in God's hands now. We've all done what we can (and I hope my US buddies all got out and voted!) and we must have faith now!

So, here we go.... by tomorrow morning we will all know who the winner is! Lord be with us through it all :)

Hey Mr President!

I heard this song on the way to school this morning. Unfortunately, there are no videos on Youtube. (Or any where else for that matter!) Clicking on 'this song' will send you to Windows Media to listen to a brief clip. Here are the lyrics~

* Hey Mr President ~ The Warren Brothers *

Hey, Mr President

I don't think I'd want your job

I can barely handle the simple one I got

Hey, Mr President

How cool is Air Force One?

Are those guys in the House and The Senate ever gonna get anything done?

I ain't no Democrat,

I ain't no Republican.

We're fathers and mothers,

we're wives and husbands.

And we pray that we dance at our daughter's weddings.

And our sons grow to fine men.

And for peace on our land.

Hey, Mr President

How about that money I sent?

Must take a lot of pork barrels to run the government.

And hey, Mr President

Our kids in the middle east

I guess you gotta fight,

sometimes to find a way to keep the peace.

I ain't no Democrat,

I ain't no Republican.

We're fathers and mothers,

sisters and brothers,

wives and husbands.

And we pray that we dance at our daughters weddings

And our sons grow to fine men.

And for peace on our land.

I cannot imagine how hard it must be

To tell some soldiers mother

That they died for their country.

Mr President won't you thank her for me?

Hey Mr President

Do you ever feel alone?

Surrounded by all those ghosts in the White House.

Bet you wish you could move back home.

We ain't just Democrats,

we ain't just Republicans.

It's all for one and one for all we're all Americans

And we pray that we see our children's children.

And our sons grow to old men.

And for peace,

Yeah, peace on our land.

Hey, Mr President.

Mr Parker Is 2!

I have pictures and a lovely post with birth-2 pictures.... I'm trying to figure out next semesters class schedule since registration begins at midnight. I just wanted to tell you all...

PARKER IS 2!

Logen Hit His Head

It's been a rather eventful week in the Duncan home. Eventful = nothing out of the ordinary for us :P

Logen was at school on Thursday and the kids were lining up on the playground when he was pushed into the side of the school- which just happens to be rock. It left a round edema thats about a half dollar size (now, it's gotten bigger since documented at school) There are 2 superficial tears in the skin (aka spots where blood came up to the skin, but never came out). The nurse suggested we take him in with his seizure history. So, I left school and headed to get my Logen man. It was nice to hang out with just him for a few hours before we had to get Parker!! Even if it was accident related, it could have been way worse. The Dr said as long as he didn't pass out of vomit more than twice in 24 hours- he would be fine. The spot was soft and swollen (which in this case, is a good thing!)

He was not his usual self yesterday and I ended up getting him a bit early. I spoke with the nurse several times yesterday- we kinda came to the conclusion that his head hurt.
He's been ok today- :) NO seizures so far today!! He had a few here & there this week, nothing like it has been. I think our last medicinal increase is working- although the pattern has been -> he starts new dose, does good for about 12-14 days and starts having several seizures per day until the med is increased again. So, we are keeping a close eye on him!

Hearing Test Results

The Audiologist will be sending me 'formal' results- but here's what we know now-

His hearing is good at least in his 'good ear'. (Whatever the crap that means!) He wasn't the most compliant child (imagine that!) in sitting still- so she wasn't able to get 'perfect' pictures of both ears. He was still on antibiotics for an ear infection, which can affect the results.

She said that his Ped needs to keep a close eye on him and we need to push our insurance to cover speech (since he qualifies). Isn't this the story of my life. They are still denying Logen. A 5 y/o NON-VERBAL child that ASPIRATES does NOT qualify for Speech Therapy according to Cigna. Go figure. Thank goodness for Medicaid! Parker has no hope since he doesn't qualify. Don't get me started on the government aspect of helping middle class families! We are to poor to provide medical things for our family, yet according to them- we make to much for help. Makes me love the people that sit on their butts and do nothing all day even more......

For now, I am pretty confident that his speech delay IS NOT hearing related! Yippee.

U Know U R A Bit Obsessive Compulsive When

... You are suppose to DRAW one set design from your play, but you actually stay up until 2am building it from cardboard and construction paper. Adam was a terrific help! He did the drawing.
I'm an amateur. This is *suppose* to be a house and garage. This is my main character (Madelyn) conversing with the "Tire Man" who has brought his tow truck to her home to fix her flat. The name of my play, as you might have guessed it, Fighting With Time.

Hello!

It's a busy week for us!

* Parker did fan-tab-u-lus Friday. I have a picture to share- this deserves a post on its own.
* Logen was seizure free all weekend long!
* Mr Parker has a hearing test this afternoon (FINGERS CROSSED that all goes well!)
* Logen has been *willingly* using his talker more frequently. Last night he carried it to Adam and asked for milk please. :) Go Logen!!!!
* I *think* I did well on yesterday's French exam
* Parker will be 2 Sunday!!! Where does time go?!

Parker's Going To College!!!! (avec moi!)

Avec moi... with me.

Yes, my littlest Mister has been volunteered to go to my Developmental Psych class tomorrow afternoon for a demonstration. I'm not really sure what they'll do with him- but he's a cute lil mess- so, he's got that going for him :) I asked them to bring a duck. The ONLY think he will do on command is QUACK. Like a duck. It's so stinkin' cute. I only hope he'll perform in a large classroom of about 250 seats (and, who knows how many will show up it varies day to day).

So, wish us luck tomorrow. As we hike together. And, then ride the bus together. And, hike some more before we even get to the building.

I think he's excited about it though. I asked if he was going to school with Mommy and he says, "Yesh". I say- are you going to be good? And, he says "Bubba". I'm assuming that's a no :)

Another Call From St Louis

I spoke with the nurse again today. It's almost freaky having a Dr's office call YOU to check on your child.
Here's our most recent plan.
* Blood work- she faxed me the script and we will do this *hopefully* tomorrow afternoon.
* He's up to 75mg AM and 100mg PM on the Zonegran. He cannot go up to much farther on the dose- which mean if he continues to have seizures, we may be switching medications.
* Admission to the St Louis hospital for a 24-48 hour (could be longer, but no shorter) ' videoed seizure watch'. We will begin the paper work for this. She said since he's not having *major* seizures everyday they wouldn't push this to be done now. It will be most likely Decemeber when we get this done.

I asked about a fMRI. The nurse said she would ask Dr Brunstrom and get back to me.
Some of you maybe interested in this. It's a functional MRI.

fMRI is becoming the diagnostic method of choice for learning how a normal, diseased or injured brain is working, as well as for assessing the potential risks of surgery or other invasive treatments of the brain.

Physicians perform fMRI to:
* examine the anatomy of the brain.
* determine precisely which part of the brain is handling critical functions such as thought, speech, movement and sensation, which is called brain mapping.
* help assess the effects of stroke, trauma or degenerative disease (such as Alzheimer's) on brain function.
* monitor the growth and function of brain tumors.
*guide the planning of surgery, radiation therapy, or other surgical treatments for the brain.




*** brain mapping
Mapping the brain's surface using small electrodes to stimulate a nerve so its electrical response can be measured. By determining the role of specific nerves in a patient, this technique helps surgeons avoid damage to sensitive areas while operating on the brain.

An Incomplete Definition

I found this here. Wish I could have said it that well.


Long before I even met Nick, a friend of mine in Maine learned her beautiful blonde daughter’s developmental delays fell into the category of mental retardation. And though I hate to say it now, I felt sorry for her.



A child with special needs.



What a pity.



I wish I knew then that pity is the last thing us parents need.



(And don’t even think about feeling sorry for our children.)



What does it mean to parent a child with disabilities?



It means the reframing of your worldview.



It means taking nothing for granted and spending more time in the present than in future plans

and dreams.



It means endless appointments and paperwork and the introduction of your child to all kinds of

adults who specialize in understanding his or her needs.



It means missing your own six-month dental check-ups and yearly pap smears.



It means growing comfortable with stares, even if your comfort is in knowing that you won’t be comfortable, but it will happen anyways.



It means knowing how to silence a pesky questioner with a single statement:



“His brain was injured at birth.”



“I have two wombs instead of one.”



“Why do you ask?’



“He has Cerebral Palsy.”



“There’s nothing wrong with him.”



“Well, he’s not looking at you because he’s legally blind.”



“What do you mean by Ok?”



It means redefining the words OK, healthy, and childhood.



It means continually adjusting expectations so you neither expect too little or too much but

rather remain open to wherever your child leads.



It means learning to follow.



It means a redefinition of your social life because either your friends don’t understand or because you find yourself with so much less time to devote to cultivating friendships. You want to extend invitations to dinner, you truly mean to return the favor, but months go by and you still haven’t had an extra second to plan a social evening. It means being so grateful to those friends who do understand.



It means working on learning how to scoop with a spoon instead of learning how to chew with your mouth closed, learning how to walk instead of ballet lessons.

Learning to go slow instead of racing. It means letting go of comparisons and bailing out of the My-Kids-More-Advanced-Than-Your-Kid game.



It means becoming almost fluent in medicalese and actually knowing what the following terms mean: IVH-III, C-PAP, Nystagmus, Strabismus, Hydrocephalus…



It means doling out medications--even if you planned on raising all natural kids.



It means joy in the controlled bend of a knee, a flash of eye contact, sunlight on an orange Lilly, the sound of your young son saying, “No.”



It means befriending therapists, multiple adults that not only love your child but remind you when you most need to hear it that your doing a good job. “You’re a good parent,” they tell you-- and you realize that all parents could benefit from hearing this from interested parties and you think how lucky you are. It means always thinking you could do more.


It means wanting time alone as a family, without appointments, professional judgment, and medical advice.



It means multi-tasking, squared, times three.



It means buckling your son into his car seat to drop him off at daycare and then driving straight to work.It means constant surprise. “Did you see what he just did?!?!”



It means never shaking the specter of death.



It means gulping joy like water.



It means questioning whether you can do this again, whether you can conceive and carry another child.



It means wanting to try.



It means not wanting to try.



It means fear.



It means acceptance.



It means hope.



It means never saying, “I don’t care if it’s a boy or a girl, as long as it’s healthy.”



It means…