Logen is DESPERATE for your prayers. Pray blog family, PLEASE pray. Just grab this code and add it to your blog (html gadget) so you can help us spread the word! Thanks! Pray for Logen

A sincere THANK YOU to all of you who have added this to your blog! And, to Anelys for creating such a cute blinkie!!

Wednesday, December 31, 2008

While 'm Waiting



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

Tuesday, December 30, 2008

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.

Monday, December 29, 2008

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!

Sunday, December 28, 2008

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!

Sunday, December 21, 2008

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!

Friday, December 19, 2008

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. *

Tuesday, December 16, 2008

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!

Monday, December 15, 2008

"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'

Sunday, December 14, 2008

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

Thursday, December 11, 2008

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

Wednesday, December 10, 2008

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.

Tuesday, December 9, 2008

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!

Monday, December 8, 2008

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'

Sunday, December 7, 2008

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'

Friday, December 5, 2008

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.

Wednesday, December 3, 2008

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.

Monday, December 1, 2008

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!

Scroll Fx

 

blogger templates | Make Money Online