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!!

Monday, December 14, 2009

Just Sad Today...

I've been a horrible blogger! Perhaps I need a place to vent again. It just seems like the only news we're getting (or I am getting) is negative and I can't see sharing negativeness with the rest of you.

I will. I (and the family) need some more prayers.

My heart procedure was an 11 hour thing, I was awake for 8 of it. I thought childbirth was bad, then my boob job was the worst pain ever. I am telling you- that procedure was the most painful thing I have ever been through. After the 8th hour when it was "decision time" I just begged to be knocked out. I made it awake much longer than I thought I would. The team was amazing at keeping my mind occupied or rubbing a hand or foot. We got rid of the nerve going to the sinus node of the heart and they also ablated some areas near the atrial node inside the heart.

We were so hopeful it would work, but so far it's not done much more than keep my heart rate below 170. Which, is an improvement b/c it would get to 216. The last 2 weeks has probably been the worst. We've changed my heart meds about 5 times (the pharamacy loves me. haha!). My blood pressure dropped so low last weekend that I couldn't get out of bed w/o blacking out. It was scary. I go in for another holter monitor on Wednesday. I am praying we can find something that works.

Last June (2009) I had a CT scan for my circulation- my toes like to turn blue. Weird things! Something in my R femur showed up. So, we did an xray. The radiologist called and wanted an MRI immediately. It was scheduled and I didn't go b/c, honestly, I just didn't want to. I figured it was no biggie and we'd do it later- let's fix the heart first. So, when I went back in to see my internist she kinda fussed at me. In Nov I did the MRI and we found 3 lytic lesions (The orthopedic doc says they are holes) in the femur. If I had a copy of the MRI I would post it. I need to get it.

So, today I went to the Nephrologist (Kidney dr) b/c the ct from Nov (we did a CT and an MRI in Nov) showed a "milk of calcium" deposit and several kidney stones (this is my 2nd time to get several stones in each kidney this year).

Today is what has me sad. The kidney guy said that the kidneys could be pulling the Ca out of my bones and depositing into my kidneys, causing holes in my bones- the right femur is the only one we've MRI'd. It's called "Brown Tumors". We discussed things with the parathyroid gland as well. I googled it. Should not have.

My list of Dr's is growing to be as long as Logen's at this point. The Dr today agreed in saying "you have multiple systems failing you, some of it has to be related". I am so glad that somebody agreed with me on that. He actually said it before I asked about it.

I am just not sure how to handle all of this. I am trying to stay positive. Now, it's just kind of like "really?". I love it when the doc says "this is rare" (as the bone, heart, and now kidney guys all tell me). I have to laugh and say "thats what the ___ doc said to. I must be rare!" haha!

So, anyway... as this crazyness all unravels we just need some prayers. Thanks :) It's putting strain on us all. I will try to be a more faithful blogger!

Monday, October 12, 2009

Heart Procedure Recovery

I am recovering from a heart procedure I had last week. I will update soon.

Wednesday, September 23, 2009

Mitochondrial Disease

Ok... We got some of the results from Atlanta back this week!

It's very complex. I'm in the midst of doing a million things & can't quite explain it all now.

Logen has a Mitochondrial Disease. He also has type 2 muscle fiber atrophy. He will start a mitochondrial "cocktail" as soon as we can find a pharamacy to compound it. There are some financial concerns, the docs say we will have to fight insurance (the doc's office is very willing to write them a letter and do what they can though) and medicaid won't cover this. As far as a specific Mito Disease, we are still waiting on all of those to come in. It could be many months. And, we may never know from what they said. We just know his mitochondria do not function normally. He's "highly probable" to have complex 1 and complex 3- and that's about as much info as we have. It could take nearly 2 years for the meds to kick in b/c they have to get into the muscle. And, there is a chance they won't do anything. As far as prognosis, we don't have one right now.

We are waiting for a big list of precautions from the doc, but were given a few to start with. Things like he can't have a certain type of anesthesia, he can't fast for long periods, no over heating, can't be around people with the flu (b/c it could take him down harder and longer), he may need to be hospitalized for even minor infections b/c of hydration and monitoring.

Please continue to pray for us. Thanks.

Saturday, September 19, 2009

St Louis Bound (Again!) & Logen Update

Hey All! Hope you all are doing well... :)

We are on the road to St Louis (again!). Logen has 2 appointments on Monday. He sees the Neuro and Epilepsy Doc this trip.

In the past 2 weeks to 3 weeks he's started having seizures again, so we made a med increase. He's also been having some "quirky" little jerking movements, increased drooling, and just some random things I don't like. So, I was glad it started around the time for our appointments. (If it had to start at all...)

Logen was moved to a new school this year (b/c of injuries last year and lack of progress). So far, so good. He seems to be doing very well. He appears to be happy about staying there and I don't get that "yuck" feeling I got when he was at "the other place".

I will update after our appt! Please pray for good news. Our 3 month post-surgery date is Oct 2, so we *should* be getting something soon! I am getting sooooo very anxious.

Wednesday, September 2, 2009

Need To Vent!

I spent 3 hours at the doc for myself today. I am so used to doing this for Logen, that I am ok with it. I have accepted that. I have accepted that there's not always good news when we pack up and head to his doctor's appts. It's just how it is. However, when it comes to me- I've expected to go and leave without "bad" or "crumby" news. Today, I went into for my hospital stay follow up. We went through my labs, etc. I kid you not, that stack was forever thick. My labs were so messed up. Things were too high, and too low. So, the doc ordered all of those again today. The one I am most concerned with is the ANA-titer. Mine is too high. Everything else is too low. I guess I just sat there with that, could anything else possibly be wrong? There are several things this could mean. I'm not going there, we will just hope for the best. It has to do with your antibodies though. I got a referral to a Neurologist for migraines (that have been around since before the heart stuff), but I wonder if all of this stuff isn't related in some odd way. like all of Logen's weird stuff??? Doesn't it all have to add up somewhere?!?!
Anyway, that's my deal. I want to be fixed. I'm done with the bad. Oh, Saturday's call... yea, I'm just sick of talking about it. Not what I wanted to hear. A heart procedure is in my future. I will elaborate in the next week.
Our family is in the need of more prayers :) Thanks!

Saturday, August 29, 2009

I honestly haven't kept up here b/c I feel so much going on is negative. And, sometimes you just want to share positive news. I was waiting for that to roll around.

So, I am anxiously awaiting a conference call from a heart specialist (Electrophysiologist) in Oklahoma City. She is calling today to speak with my family about what looks like our 1 option for me. She (the doc herself) called me on Wednesday and told me that the only option she saw was experimental and risky. Her words, not mine. She said she put me in "tentatively" for heart surgery on Oct 6 (just happens to be 3 days after my 25th birthday). She requested todays call to be a family thing, where atleast one other person be listening and participating in the conversation. I chose my Mom b/c she is an RN and worked 10+ years at the Heart Hospital. The doc also told us to record the call so we could refer to it again while making the decision.

To be quite honest, I am scared out of my mind. Not only do I feel like I have been run over on most days I also have some weird, eerie feeling of death. My mom sat down and sumed up my tests and things for a family member in a recent email. I thought I would post that for those interested. Please continue to keep Logen & I, as well as our family in your prayers.

* We have not heard anything on Logen's test results. I will post them as soon as I know something! *

EMAIL:
"As you know Jess has been hospitalized 3 times since Nov 08 for "a racing heart" called SVT, Hypotensive crisis (low bl pressure) The cardiac catheterization showed no blockages in the arteries: a right & left were done. The right side checks for pressures inside the heart as well as the amount of oxygen. The heart itself is in good shape as far as healthy strong muscle. The electical conduction appears to be the issue although they could not see the right ventricle.

So far she has gone through:
ECG-sensors that detect electrical activity of the heart that measures timing & duration of each electrical phase in your heartbeat (this is only as good as the minute it is being done)

Holter monitor-worn for 48 hrs to record activity during a routine day, on more than one occasion.

Echocardiogram-uses sound waves to produce images of heart size, structure & motion.

CT & MRI-collects images of the heart & chest. Stress Test-failed this test within the first 5 min, so was unable to complete r/t heart rate above 200 while on the treadmill.

Electrophysiologic testing & mapping-catheters tipped with electrodes threaded through blood vessels to a variety of spots w/in the heart. The electrodes map the spread of electrical impulses through the heart. They stimulate the heart to beat at rates that trigger an arrhythmia hoping to find what may be causing the problem.

Pulmonary Function Test (PFT)-meaures how well the lungs are working, expanding & contracting & of exchanging oxygen & carbon dioxide efficiently between the air (or other gases) within the lungs & the blood. It records changes in lung size as air is inhaled & exhaled & the time it takes for the patient to complete the task.

So, as you can see she has endured a lot in the past 10 months, with very little explanation as to why she is short of breath after walking a short distance, poor circulation (blue toe syndrome) & a heart rate that cause fatigue/weakness with minimal tasks, dizziness & several faiting spells.

The cardio & pulmonologists are puzzled with what appears to be a healthy 24 yo who goes to school full time & is raising 2 small children. She is an over acheiver & it is extremely difficult to hold her back from doing all she does in a day."

Friday, August 7, 2009

Had a heart cath done yest and they put me in cardiac ICU for the night. I don't think ill be goin home today.

Wednesday, August 5, 2009

NEW doctor, NEW plan!

Ok, so... I'm on night 4 in the hospital and i've lost my sense of humor. I'll give a run-down of whats up.

I passed out walking down the hall Sunday. I was home alone with both boys, Adam had run to the store. When he walked back in, him pushing on the door must've brought me "too". The boys were laying on top of me. He put me on the bed and got me dressed and on we went to the ER.

I went straight back b/c of my heart stuff. They checked cardiac enzymes, etc. I had had a migraine all day I couldn't kick. They decided to do a head CT. They started an IV and gave me morphine for chest/head pain. 5 hours later they said it was to risky to let me leave, they admitted me.

Monday, they watched me, did EKGs, and ran labs. Tuesday we did an echo, EKG's, a pulmonary function test and more labs. Today we've done EKG's, labs and called in a new doc!

My EP actually said yesterday that he thought I passed out b/c I have a UTI. Seriously, we were all ticked. We called in a new Cardio today who I really liked. First thing tomorrow I will get up and do a stress scho. My heart got up to 150 today (and I am sedentary in here, let me tell you). So, he wants to see what it does with activity. He said he is going to be in there to watch me. My BP is staying low (too low actually) at 95/59. I'm already on the highest doses they make of 2 heart meds, so we are kinda at the end of the rope with medication therapy.
Our new plan is extensive and several tests may be repeated. I have been under so much radiation this year, I think my insides are fried. I've had my blood taken so many times, I honestly cannot even feel them stick me.

Please say a prayer for our family. The boys are really having a hard time with this. Parker slept on the couch last night b/c he couldn't sleep, not even in Mom's bed! Last night when he left the hospital he held my hand and said "go with me, mommy". Talk about breaking my heart. Mr Logen adapts to change like no other. He is very happy to see me when he comes to visit and has the biggest smile ever. It's the bestest!

Tuesday, August 4, 2009

So far today we've done the echo, lab work, and pulmonary test. I was not-so-great at the lung thing let me tell ya.

Monday, August 3, 2009

I may b here few days. We r testing my cortisol levels, cardiac enzymes, pulmonary functions, possible repeat echo and possible heart cath. Plz PRAY!!!!!

I'm in the hosp. Plz say prayers. We've had not so good news n last few wks. I fell last night/was disoriented. Will update ltr. Prayers plz. Thnks!

Thursday, July 23, 2009

Please pray for this family.

We've had some generous people in our lives and we continue to be greatful. I am probably one of the people that sees it the least, but I know the Lord keeps blessing Logen and our family. I am posting parts of the following obituary b/c this family is asking that in lieu of flowers, donations be made to Logen's Medical Fund. The thing is, this family has never met our precious Logen. Connie works for a company that Adam has delievered to frequently over the last 5 years. She has asked about Logen and stayed informed through Adam. So, it just goes to show- there are some amazing people out there. So, please- keep this family in your prayers. What a blessing they are to us.

Duane, 63, died Friday, July 17, 2009. He was born Jan. 2, 1946, in Denver, Colo.
He served in the U.S. Army and was a Vietnam veteran. He worked for many years as a retail manager and also as an artist. He married Connie on Aug. 8, 1989, in Ruidoso, N.M. The couple moved [here] in 2000. He was a member of the National Rifle Association, the American Legion, and the Central United Methodist Church.
He was preceded in death by a son and a brother.
Survivors include wife, Connie; a son, James; a daughter, Susan; a stepson, James; his mother, Aileen; two half brothers, Mack and his wife Jan , and Scott and his wife Dianna ; a sister, Donna; four grandchildren; and a greatgrandchild.

A memorial service will be held at 11 a.m. Saturday, July 25, at the Central United Methodist Church.

Arrangements are by the {county} Memorial Park Funeral Home of [town].


In lieu of flowers, memorials may be made to the Logen D. Medical Fund, in care of Arvest Bank.

Tuesday, July 21, 2009

Logen's Blog Is Up!

There's not much there... but I'm slowly working on it! I forgot how much work was involved in the blog start up. I can't remember how to do any of the basic set up stuff!

www.logend.blogspot.com

Sunday, July 12, 2009

Logen Man Update

Logen is doing pretty good. He's not limping very much anymore. He will beable to swim (and resume pool therapy- his favorite form of therapy!) by the end of this week. He pulled his bandage off last week and his surgical site was still a little bloody and swollen so I just put a bandaide back on it. (There's a facebook picture on my mobile uploads).

We have seen an increase in seizures in the last month.

It's re-eval time again (OT). Speech was in May. PT is soon as well. On our IEP no progress was made during the school year. He has lost skills in OT as well as Speech in our private therapy evals. Just asking for prayers here. We are also strongly considering a change in schools. This was discussed in the last IEP meeting due to several injuries (quite a few unexplained ones) Logen came home with. All of this is another post in itself.

We won't have results from the skin or muscle biops for about 3 months. They will send the CSF results and the RMR results at the same time.

Dr. Shoffner sent me the clinic notes from the appointment and I will post the "important" ones soon.

I'm playing catch up on homework now (well, avoiding it actually).

Thank you all for the continued prayers.

Thursday, July 2, 2009

Logen has been released! Doc told us to spend one more night in Atlanta in case any complications come up!

LOGEN IS OUT OF SURGERY!! He will be in recovery for a minimum of 2.5 hours.

Log was taken back around 920 (its 1000 now). He was a bit upset about me laying him down. They said it'd take about an hour and a half. Say prayers!

Logen was happy when we got to the hosp, but as soon as we put the arm band on he figured out we were up to no good. He's now very mad at us!

Wednesday, July 1, 2009

Waiting to meet w Logen's surgeon. Our last appt was a lot to take in. Keep our family in your prayers, please. Thanks!

Went back to hosp to meet w/ surgery APN. Now we are going to meet with the Neurogeneticist! Its the BIG appt!!!!

Off to our 2nd appt- Resting Metabolic Rate Testing. Logen has had to fast since 1am. He's a thristy/hungry toot!

Waiting at our 1st appt of the day- meeting with the anesthesia team.

Tuesday, June 30, 2009

Stopped in Tupelo, Miss at 230am for rest. Finally back on the road! Saw lovely green astroturf for a driveway. Made me laugh.

Monday, June 29, 2009

We are driving to Georgia. Heading out now to break up the drive into 2 days. Keep us in your prayers! Will update frequently :D

Friday, June 26, 2009

Confirmed!

The Surgeon has confirmed our spot next week! So, WE ARE ON for Atlanta and seeing Dr Shoffner! I am thrilled ya'll! I can't wait for results. I know, 3 months away... but- maybe some answers, FINALLY!

I was on the phone all day yesterday trying to contact people regarding flights, etc. This is really starting to stress me out :-O However, I am sooooo ready to have this done!

I have started Logen his own blog... there is nothing on it yet. I hope to copy over any post regarding him from my blog to his by tomorrow. I will also update along our trip. The main purpose of his blog is for the companies that have asked for more information before they will make donations. I'm not sure how I will keep up with all of these blogs ;)

At this point, I am working with Angel Flights trying to get Logen and I out there free. They won't fly more than I passenger with the patient. And, since it's a holiday weekend next week- it's looking doubtful. But, worth a try. If not, I'm not sure what we will do, as the flight prices keep going up.

Say prayers for our sanity! I called lotsa family members last night for a very detailed family history! Holy Smokes! I didn't know how many heart conditions we had. And "child birth" problems. I got my issues from both sides of my family. I feel blessed to have been able to have 2 kids after hearing it.

ATLANTA HERE WE COME! :)

Wednesday, June 24, 2009

Atlanta Appt (Dr Shoffner) Scheduled!

Oh boy! We've been so stinkin' busy. I have this week and next week left of 3 classes a day, then 5 weeks of just 2 classes. That will feel like a breeze after this craziness! :p

Sooo... His appt with Dr Shoffner (the Neurogenetics specialist) has been scheduled for July 1 and 2. The only hold up at this point is they can't confirm until about Friday. Which will leave me about 3 days to book flights, rental car, and a hotel AND get to Atlanta! Kinda, just a little bit, Stressful!

Where the funding for said things will come from it beyond me. We've been slowly gathering stuff, but I haven't had a break in school long enough to pull a fundraiser together.

The Doc has reviewed just half of his records and defininately wants to see Logen. Here is what we will be looking at (the list could change):
Diagnostic Testing for Mitochondrial Disease
* Blood for mtDNA (PCR and Southern)
* Blood and CSF for Lactate and Pyruvate, or Brain MR Spectroscopy (we are doing the spinal tap at this point)
* Urine Organic Acids (by GC/MS)
* Plasma and Urine Amino Acids Blood and Urine Carnitine
* Brain MRI (He's had 2. 1 was abnormal, 1 was normal. You're guess is as good as ours on this)
* Muscle Biopsy (they will be removing a 1 by 1 piece from the top of his leg) and Skin Biopsy, Neuropathology and Electron Microscopy, Mitochondrial Electron Transport Studies, Fresh (coupled) mitochondrial Polarography
* Resting Metabolic Rate Study

{We've been told by the Neuro that all of my cardiovascular issues can be something related to Logen. It can just now be showing up as "adult onset" in me. If Logen does test positive, I belive I would be tested as well as Parker and possibly Adam- the reason Adam may not be has to do with the way the mitochondria are passed on. I'm not sure what would be a good thing here. We just want answers for everything thats happening, medically, that no doctor has been able to explain!}

Another hang up is travel on the 4th. I'm a little afraid to fly on that holiday. Call me crazy! ;-) I'm excited about this and want to get the testing done ASAP bc the results will take around 3 months to come back. Rrrrr! I hope it all works out and we can get it done next week. I am going to contact Angel Flights and see what they can do as well. Tickets from here to there are around 900 bucks a person! Driving time is about 13 hours if we just drove without stops or traffic. I hear other parents laughing out there! Like that would ever happen, 'eh?!

Tuesday, June 23, 2009

Help Please :)

I need to make Logen a webpage for his "stuff". (AND QUICKLY!) We've had some offers to help with his medical things, but I don't want to direct them here b/c I have to much of my stuff on our blog. So, I want a website for him. I was trying to stay away from a blogspot account b/c it has a lengthy addy--- anybody have a suggestion?!

Thanks :)

Thursday, June 11, 2009

Teaser Pics

I have several pictures to upload here. I mean LOTS! And, since I have a fairly large homework assignment due in 3 hours and I'm not half way done, what better thing to do that upload a few pictures!

Mr Logen in his Easter outfit (with my Dad's dog, Buddy)
Mr Parker in his Easter outfit (He's thrilled, you can't tell?!)

Wednesday, June 10, 2009

Prayers Tomorrow, Please!

I suppose this one is to be more of a vent. Or a prayer request. I'm just not sure.

We changed my heart meds last week b/c one of the medications. I'm on med 3 and nothing has brought my levels under 100 for an extended period of time or gotten rid of all the lovely things (like allowing me to walk without becoming winded!) like it should. My feet and hands have started tingling and feeling numb. My toes also started turning a lovely shade or purply-blue. The blue thing has happened on several other occasions and when I asked another doc about it, she'd said it was fine. FINE??! Blue toes aren't fine....

So, when I called my EP the nurse said, "come on in now". I went in, the doc looked at my toes- saw that they are blue and ordered an ABI to be done then. The 'people' came in and did my ABI (which hurt in one leg... as she warned. You wouldn't think just taking a pressure would be painful). I'm cutting out details here as I have a homework assignment due in a few hours. I was sent to check out and be on my way- they were going to call with the results.

I kinda freaked when the nurse caught up with me and said "I'm glad I caught you, we are trying to get your insurance to pre-auth a MRI and MRA now, can you just sit in the waiting room?" Um... ok. Flip out. So, I sat there and text my mom and was to the point on little water droplets in my eyes. The nurse came back out and just had me come back there b/c one of the nurses had the insurance on the phone and one had central scheduling on the line. My ABI ended up being .94 and 1.00. I was told that anything below 1 is abnormal. Anything below .95 is "significant narrowing of one or more veins in one or both legs." My Doc spoke with another Doc while I was there, we didn't get the test scheduled for that day b/c it's a 3 to 4 hour deal. And, the machine wasn't open. So, I go in at 2pm tomorrow.

Conclusion: the blood is not circulating to (and through) my legs/feet like it should be. We are going to figure out why. So, Dr B says. This can be related to my heart thing or not. We don't know.

I do NOT fit in the "approriate categories for any of this stuff. I am young, never smoked, I don't do drugs, or drink (well... not like they are talking!), my BMI is perfect... it just doesn't add up. And, my Doc says that. "This happens to 80 year olds, not people like you". Yes... he said that!

Anyway... I get to be in a tiny space for a while tomorrow and I'm just a little concerned about everything going on. So, please keep our family in your prayers. I had a test today and yesterday. And, still working on all of Logen's stuff. And, it's just really overwhelming!!!!

Back In School We All Go

If you didn't already know- I'm in summer school. I'm trying to "bust out" 9 credit hours in 5 weeks. I have 4 weeks left. I wake up around 4:30 am and leave my house by 6:15. I'm done with class around 2 pm each day. I get to see my kids by 3:30ish. And by about 4 pm, I'm about exhausted and can't think straight. Please don't attempt to get me to remember anything important between the hours of 4 pm and bedtime b/c I don't remember it.

Logen is also in "Extended year session" aka summer school until July 2.
Parker has returned to a new daycare (he was 'removed' from the other... can't remember if I blogged this?!) and is doing well. They put him in with the older kiddos and his speech is improving. He's minding his manners nicely! Now, when he comes home.... oh, thats a different story. But, the poor little guy has to get up so early- so we cut the boys some slack there.

I am taking Exercise Physiology, Seminar of Exercise Science, and Motor Development. I had my first test at 7:30 this morning. I have another test tomorrow in another course.

Wednesday, June 3, 2009

I've been having some circulation issues as well as trouble catching my breath- so my doc has changed my heart meds. I'm actually starting to really worry!

Thursday, May 28, 2009

Hacked! Or something.

OK, I'm not sure what's going on with my email! I've had it for over 5 years now with 0 problems. However, I have gotten several texts and emails saying I'm sending out weird messages!

One was "Hi it's really me.... I've lost 31lbs with this acai crap..." And, Melinda said "if you lost 31lbs you'd disappear. So- obviously- ERASE that! It's NOT REALLY ME!

Another was "I SHOP FREE" Well, if I shop free- I'd sure like to know how I do it. So, That's NOT me either.

When I signed into yahoo today I got "Welcome, Lillie!" WTH?!?! And, my status was "looking for hot boyz 46". Yea.... right. There was a picture there to! That is NOT me either!!!!!!!!

ANY SUGGESTIONS!? I hate to trash that email addy as that's they address everybody has. I did change my password today, and spam a whole slew of stuff.

I AM SOOOOOO SORRY IF YOU ARE ONE OF THE ONES GETTING JUNK FROM ME!!!!!!
BUT, IT'S NOT ME SENDING IT.
I assure you I wouldn't knowingly send out that mess!

Tuesday, May 26, 2009

Logen graduates Kindergarten TONIGHT!!!!!!!! Holy Smokes. Where does the time go?! I'll be sure to post the pictures.

US Air Forces

I know there has to be somebody reading this (or that knows somebody!) that has info about the US Air Forces- especially for women.

I am exploring my options. I won't go into detail. But, I think this might be a good opportunity. Especially since I want to *someday* go to medical school. I'm doing some research and hoping to go to a local recruiting office this week- depends on childcare for Parker.

Any information (good or bad) from anybody is appreciated. Thanks! jklduncan@yahoo.com

Saturday, May 16, 2009

I'm Home!

I was discharged Thursday afternoon. Things look ok, I go back in 1 week for labs- my potassium was still low on days 2 & 3 of labs (and they'd give me a supplement everyday). So, I left for meds to take for heart health 4x a day. I'm 24! My d/c nurse said it nicely and I have to agree- nobody my age should have to take this many medications for her heart. A little self pity, I guess.

I'm home, picking right back up and going about our business. I haven't felt really good. The meds totally wear me out. And, I've been seeing doubles! (its the meds!) They said it would take a while for me to adjust to them. Oh, boy! haha The boys are happy Momma is home, but they are having some Nana withdrawls!!!!

I'm working on getting my private blog back up.... send me an email if you're interested, I will need your addy to add you.

Wednesday, May 13, 2009

Hospital Update

Not sure whats up with the ad in the middle of my blog?!

Thanks to one of my great friends, my stay hasn't been to bad! Julie has kept me fairly entertained.

Yesterday was a bit rocky. The new beta blocker knocked me out. I couldn't keep my eyes open. My blood pressure dropped very low last night and was still really low this morning. I got up and moved around, which brought my heart rate up to 113 and my pressure up to high (I also got dizzy and felt like I was going to float away... I'd rather have been on a cruise). My APN came in and said that's all part of inappropriate sinus tachycardia. The Doc came in about 2 hours ago and said on the monitor things are looking good- even with the fluctuations- the meds are doing what we need them to do.

I did get in "trouble" for just sitting a reading. I was told to get up and walk around the unit. I told him I never get to just sit :P As boring as this all is, it's kind of nice to not have to wash laundry or dishes! I miss my kids like crazy and am ready to go back to it all though.

I did not sleep last night. I finally went to sleep around 1am and at 4:30 I was woken up for an EKG and labs. A lady rubbing your arm with alcohol to wake you up doesn't make you happy, let me tell you! At 5:30 (I had just gone back to sleep) they came in to do vitals.... And, at 6:30 my step dad brought me IHOP.

Fairly uneventful here. My kids have been by to visit, but aren't able to stay long b/c they dont do confined spaces for long periods of time.

My BP is still too low. They won't let me stand long. So, I can't shower!!! :( I was woken at 430am by needles and an EKG. I was not a happy camper.

Tuesday, May 12, 2009

I've survived the first 12 hours! My BP is dropping (at 91/57 now) and its a concern (there's no drug to make it go up). Will fully update from computer tomo.

Monday, May 11, 2009

I begin my hospital stay tomorrow morning. Expect a "boom" in blogging this week!

Sunday, May 10, 2009

Happy Mother's Day!

To all Momma's out there-

I hope you have a wonderful Mother's Day.

Saturday, May 9, 2009

I Fell!

Today after we went lawn mower shopping we went for lunch. Parker has gotten very good at running away from us... ideas would be helpful!

He was running towards a very busy street, so I ran after him. I was coming down a wheelchair ramp and crashed. I honestly cannot say what happened. I think I blacked out?! When I landed, I couldn't move my right knee and had pain up to my hip and my toes were numb. I lost the nail polish on both "big toes" and managed to bloody my R toe, L foot, L knee, and R palm. We got home and I iced my knee, cleaned my "boo-boos", and napped once my pain meds kicked in. My knee still hurts and I'm walking around with the help of a cane :) I'm feeling about 80 tonight!!!

Ya know, when stuff keeps happening- ya just gotta laugh. I can't believe I tumbled down the wheelchair ramp and hurt myself! The waiter from the restaurant even came out to check on me! Lordy Lordy :)

Thursday, May 7, 2009

Zombie Hangin' In Space

It's about 12:30 Thursday- a little over 12 hours since my 1st dose of my new med. I feel really awful! Like a living, walking zombie. I'm so exhausted. I feel like I haven't slept in days. And, I have a just "hanging out in space" attitude. The doc said this is to be expected until my body adjusts. I can't wait. This stinks.

Wednesday, May 6, 2009

Heart Stuff

I started out my day by going to see the Electrophysiologist. Somebody had finally figured out what is going on with my heart!

I started a new medication for heart failure today, a cardiac glycoside. He started me on the highest dose. My Pharmacist warned me of nausea. He also said if I start to see "Halos" or lights around things (or any other vision change), my dose may be to high and I may need to go up a little slower. Doc also said to drink plenty of electrolytes! Blood tests can show if you have the appropriate levels in your system. I thought that was pretty cool.

He will be admitting me to the hospital for 3 days to start a new beta-blocker (BB) b/c the current BB is not working as it should. My heart rate is still averaging 120, but my blood pressure is around 100/60 (normal is 120/80). So, while my heart rate isn't going down, my blood pressure is. There are too many risks involved with starting the new med, so he won't let me start it at home. It must be done while monitored 24/7. I am waiting to hear back from the nurse on when.

This is a life long condition and surgery isn't an option (at this point, but who knows- maybe somebody will invent it!)- just symptomatic treatment with medications. It will be a combination of a few meds to treat.

Obviously, the biggest risk associated with this is heart failure. But, my doctor seemed confident that with the proper medications we should beable to avoid this. :)

The med I started today may make me tired as it slows things in my body down. My poor heart is so used to going so fast it's not going to know what to do when it gets to rest!

I'm trying REALLY hard not to let this get me down. Please say a prayer for me (and my family) on this. It's a scary thing, but I'm keeping my faith. I think I am going to start "private blogging" again (there's marital probs, Logen's stuff, this, etc!). If any of you are interested in reading, let me know.

Doc started me on a med for heart failure. There's other plans of tx in place. Will update when I get home tonight. Say a prayer for us.

I have an appt with an Electrophysiologist this morning b/c of my heart. Its hitting 200 beats/min!

Monday, April 27, 2009

Log was averaging a seizure an hour earlier today. We admin. Emergency meds and it seems to be better. This weekend he had an increase in seizures as well.

Thursday, April 23, 2009

Idiot Geneticist

Here's the re-cap from our April 10 appt.

This guy is an idiot. I will be writing to whoever I need to about this ding bat.
We walked in pretending we knew nothing more than at our last appt with "Idiot" (my nickname for him) in January. We asked him what his next step would be in finding a Dx for Logen. He said a blood test for Mitochondrial "stuff". We said ok, explain. He blah, blah, blahed. We half listened- already hearing the cons and pros of the biopsy and blood testing from Dr B in St Louis. And, as you all know by now- we trust StL with everything b/c they haven't screwed up.

So, interesting part happens. He says this is the LAST step for Logen. IF this blood work comes back normal, then we are done. There is no more testing. This is it, end of the road.

I sat up and said, "Well Dr Idiot- Have you heard of Dr Shoffner?"
Dr Idiot: Hmmm. Yes. (puzzled look. crap! How do you know about him?!)
Me: Would you consider sending Logen to him for a muscle biopsy?
Dr Idiot: Well, I don't really think that would be necessary if the blood work is normal
Me: From what I have been told and researched myself, the blood tests can be wrong. I think it would be best to get accurate results so we can begin treatment, if possible.
Dr Idiot: (Another oh crap look! This mom may actually know what she's talking about. And, he just sits there like a big dufus.)

I'm not kidding- he wraps it up by TELLING me we will draw the labs and he will see us soon. I'm like, uh- WHAT?! I went ahead with the labs, b/c IF they show something- then, ok- we may have an answer sooner (7-8 weeks). But, I really DOUBT we drive 4 hours to see this guy again. Horrible. And, how can you tell a family that this is the end of the road for them? It's obviously NOT. Had we not had the knowledge we do and not been to StL, then we wouldn't have known about Shoffner. There are other familes out there trusting this man. And, I feel he's incompetant. He was arrogant. He walked in saying he was the best there is. And, he is clearly NOT. He told us this the last time we saw him as well. I should have taken Logen and ran quickly then, but I gave him a 2nd chance.

So, there's part one of drama from those appts. Crap! Total Crap. I'm going to bed now. I'll be back soon!

PS: the short 1-2 line posts are via text. Thats why they are short. :)

Wednesday, April 22, 2009

It's going to be one of those "up all night" cram sessions. Yay me.
Logen's had some funky stuff today, "new" seizure activity as well. Will update soon.

Tuesday, April 21, 2009

OMG! Why are medical insurance companies a PITA?! And STUPID?!?! AGGGGGGGGGG

Sunday, April 19, 2009

Blogger Un-Motivated

So many things going on right now. I have no desire to blog. I used to love blogging. It was a great way to 'release' my emotions.

There are many things going on with Logen that I can't say here. Just pray.
There's stuff I am struggling with.

2 of my friends have been diagnosed with cancer.

Danielle has been diagnosed with type 1 cervical cancer. She has 2 small children. Please pray.
Fallon has been diagnosed with type 3 cervical cancer. She recently lost a set of twins. She has a young daughter. The outlook is not good. Pray for her, please.

It just seems like there are so many negative things going on around me. I can't seem to pick myself up. Just keep on praying for our family, please.

Friday, April 17, 2009

Another Family Loss

We've had alot going on in the last weeks. We had a few appts last Friday (April 10th) at Children's (not St Louis, our "local" 4 hour away hosp). So, we decided we would take the weekend to spend with my family- who lives about an hour away.

Thursday night (our 5th anniversary) was hell. The entire drive was literally spent driving through hail and dodging tornados. We spent Friday night with my Grandma and Grandpa. Saturday we headed to Dad's. I got a call I missed from him on our way.Then a text from my big sis who said to come there b/c Dad & Liz had left. Long story short- my Uncle died. He was dx'd with lung cancer over spring break (about 2 weeks ago). He had begun chemo and radiation.

My Uncle left behind a young daughter, Dawn. My Dad & Liz have legal guardianship over her.

Dawn NEEDS your prayers. She seems to be ok, but my littlest sis said she's good at putting on a "show". D lost her mother in January (she was shot). And, now her father. D's life has been full of tragedy. Her mother used to do some pretty bad things, such as locking her in monkey cages. I just ask that you say some prayers for this sweet child.

We had to drive back on Sunday after church b/c Adam had to work- he's not getting paid for the time off, so it's been a challenge. I drove back down Wednesday morning, attended the funeral and drove home. Let me tell you that 8+ hours in a car and a funeral in 1 day is very difficult. I didn't get home until after 1:30am.

My Aunt Pam was at the funeral (she was the aunt that lost her spouse {Uncle Stevie} in Sept). She hugged my sisters and I am said, "It's just not fair you girls have had to lose 2 uncles like this in such a short time." And, she nearly lost it. Brings back memories. It's still not settled that Uncle Stevie is gone.

My Dad caught me in the kitchen alone that Saturday night after Clark passed. He said, "Aren't you glad you aren't here for my funeral?" I looked at my dad like WTH? Did you relly say that. Then he continued with "you all will not need to cry and grieve for me when I'm gone b/c I will be with the Lord. Very happy." I am still bothered by this.

I will update on Logen's appts last week and the rest of our lives. I have figured out how to update from my phone (using text, so my character limit is 160). I think I will add twitter.

Continue prayers for Logen as well. He's been throwing up his pediasure this week. Not good.

Testing x 2

Testing!

Tuesday, April 7, 2009

Busy, Busy!

I am working on putting together a flyer for Logen. Putting his 5 years of life (and testing) into 2 paragraphs isn't an easy task. I have to get this done asap so we can begin with posting them/handing out!

I will go to banks tomorrow to set up a donation account. I am also going to talk to our tax lady. A few Wal-Mart vendors told us they need a tax ID number inorder to make donations (of either product or of monetary value)

I will be setting up a blog for just Logen. I am still going to keep my blog up to date. I will most likely post the same here an there, but will keep the emotions at bay on his blog. It will be factual. It will be the site listed on the flyers, where people that are interested can go to learn more about my little man.

I'm not dropping any classes. I've had many papers due in the last week and it's really hard to get done. I'm not on the "school track" right now. I haven't gone to one class since before St Louis, and I will email tomorrow and beg for forgiveness. I know this is bad.

Parker was sick (and I am not 100% convinced it's gone). I took him to the Dr yesterday, by the time we got there his temp was 104.3! We did a flu swab and a strep swab- both negative. His ears looked ok, but Parker kept jerking so he wasn't sure they weren't a little infected. The Dr gave him an antibiotic- he's not had a temp since a few hours after starting it, so maybe it was something bacterial?!

Logen doesn't have the flu anymore, but he's still snotty. Maybe it's allergies (or sinus stuff). He's not eating. I mean, way worse than he was with just the Keppra. He's now on 2 meds with decreased appetite, so this is to be expeted. I can't wait for him to be off the Keppra completely. The Topamax seems to be doing the job, unless we are in the honey-moon phase. Keep your fingers crossed!!!!

Working on getting medical records gathered.

Logen goes in for his thyroid labs Thursday.

We head to our local children's hosp (4 hours south) Thursday night after Adam gets off work (Also our 5 year Anniversary!) Logen sees the Endocrinologist and geneticist. I do not think we will learn anything, I have not heard vry many good things about the E, however we have had the appt since the beginning of Decemeber- so we are going to go.

Thank you guys for your continued prayers!! We are so blessed!

Tuesday, March 31, 2009

Neuro Center

Deep Breath. Ok. Go!

Logen saw Dr Brunstrom yesterday. Dr B and her staff spent a good 4 hours with us. They are remarkable.

1) The "tumor" on Logen's leg was not all removed. She suggests a plastic surgeon remove he rest of the tumor and fix the scar on his leg, he can make it nearly invisable. We knew shortly after the bandage removed that it still did not look right. Once again, there goes my faith in our local Children's hosp. A few pages in Logen's medical chart were removed before they were sent to us. Also fishy.

2) We are going to order a Mckie hand splint with a supinator strap for Logen's left hand. This will help keep his thumb out. Insurance won't pay for it and neither will medicaid- so it's an out of pocket expense. He won't wear it all the time. We will put it on him when he's working (coloring, puzzles, shape sorting, etc)

3) Repeat Swallow Study, done in specific ways. Once it gets closer to time for the study- I will post on this.

4) Growth: he's falling off the charts. No growth has been made since she began seeing him in 2007. We will check his thyroid functions. However, this can also be resulting from a mitochondrial disorder.

5) And for the big stuff.

* She's referring us to John M Shoffner in Atlanta, GA for a fresh muscle biopsy. While there he will undergo more extensive testing as well- a spinal tap, amino acids levels, metabolic functions, genetic testing, etc. The lost of testing they do is long. Check out their website. Wow.

* Dr S will not see us until I have every medical record on Logen from birth to now. Our hosp is not cooperating with me so far. Our ped's office has also called and asked for the EEG on disk. We keep getting told it's to large to copy. They won't release the report either. And, apparently nobody knows anything about the missing pages in his medical history.

* We are looking at possible Mitchondral disorders/diseases now.
* There are many precautions they gave us.
* avoid prolonged fasting. She said not to let Logen go any longer than 8-10 hours w/o food. This means waking him up if he's sleeping.
* avoid extreme exhaustion
* avoid overheating
* all of the above can lead to brain damage if it is mitochondrial

* We are limited in medications for seizure control b/c of the way the body processes the meds. Mito disorder + certain meds = bad!

* Once we do the testing, results for the biopsy take about 3 months to come back. We can have the spinal tap results in 2-3 weeks.

* If we do not get Logen in to see Dr S in the next 3 months, we need to do the spinal tap before hand. We need to eval his CSF neurotransmitters and look for a cerebral folate deficiency. If he has a deficiency a medication can be given to fix! Dr B has seen major improvements with the med! IF we do the testing here, it will take about a month to get back.


ASKING FOR HELP!

* Just to do the testing with Dr S is $20,000.00+. Medicaid will not cover this b/c it's out of state. I am checking into our insurance. The minimum we would pay is 30% of all costs. We also need to get there (16-18 hours away).

* I need ideas on fund raisers. Anything you can come up with be so helpful. Any way you can think of to help us raise money for the testing, we appreciate!

* We also need prayer warriors!!!!! And lots of them! :)

Epilepsy Center Appointment 3/2009

Logen saw Dr . Thio yesterday. Dr Lui Lin Thio is the Director of the Pediatric Epilepsy Center at SLCH. He is a very knowledgable man who spent an hour and a half with us. He made sure we had all of our questions answered plus some! It was wonderful!!!

This is what we learned about Logen regarding sezures:

* We moved from a "seizure disorder" diagnosis to an "epilepsy" diagnosis

* Multiple seizure types- tonic/clonic, myoclonic, and partial

* His seizures are generalized {best he can tell}- meaning they do not start in one area of the brain (those are focalized seizures)

* Dr Thio *thinks* Logen may have "Medically Intractable Epilepsy" meaning medications may not control Logen seizures. He's had 2 drug failures so far. We are limited in medications we can use (above post)

* Possible candidate for Epilepsy surgery- however, since Logen's seizures are not focalized, the surgery may not happen. He considers this a possiblity b/c of the extensive presurgical evaluation. We may do the eval, but the surgery is not likely.

* Vagus Nerve Stimulation (click the name for its description)

* We will increase his Topamax to 15mg, 2x/day. We will begin weaning Keppra soon. Hopefully we can start that in 1 week. It will depend on how Logen reacts to the Topamax.

Saturday, March 28, 2009

Missouri Bound!

It's snowing! It was 70+ earlier in the week and it's snowing!!!!!! Crazy weather in the south.

We've been watching road conditions- most say "travel only if absolutely necessary". But, we had 70 degree weather earlier in the week, so the roads cannot be that bad. I think we are going to try to truck to Springfield, MO tonight. They have an AWESOME resturant where they throw rolls at you :) Good southern fried food. Yum. And, Bass Pro Shop. How could we make this trip without stopping there? I could- Adam could not.

From S'field we will be around 4 hours from St Louis (give or take), so tomorrows drive shouldn't be to bad. Monday's weather looks the best- the day we will be in the hospital all day long! Go figure. And, rain Tuesday! The day we drive home. Yippeeee!

I will update as I can. I am on Facebook and you may get more out of my "status updates" b/c I can do those from my phone. As well as pictures. I can upload those instantly. If I'm not your friend, add me :) My email is jklduncan@yahoo.com I think you can add me that way.

Wish us luck!

Our house sitters promised not to pull pranks on us this go around! haha (I posted pictures when we got home from Florida last August)

Thursday, March 26, 2009

YAY! An Added Appointment.

St Louis called this morning and they were able to get Logen in to see the Epilepsy specialist right before we see Dr B! I am very excited about this. They said they had to go straight to the Dr and presented Log's case and he said, "Yes. I want to see him. Put him down at 1." YAY!!!!!!!!! We are excited!!!

I am also waiting for the nurse to call me back regarding his meds. He's been on 15mg of Topamax for 1 week now. Since he's been ill, I'm not sure what to think of it. I can't say we've seen an increase in seizures - but we never do when he's ill - so? Guess we go from here. We will begin to taper off of his Keppra (another Yay!) I hate that stuff!!!!!!!

Wednesday, March 25, 2009

Logen's Got The Flu

We are on day 5 of Type A Influenze (The Flu!) and an ear infection.... He's not had a fever in 24 hours, but his cough is NASTY and he's still not eating. :(

For some reason, his seizures do not increase when he's ill. This should be yet another clue for whatever Logen has b/c this is NOT typical!!!! Right?

Looking forward to St Louis in a few days. Hoping we learn valuable info!!! And, Adam wants to go to Cabella's so bad he can taste it. A few hours in a hunting store. Yea for Mom. Oh, I dread it!

Target Deals

Market Pantry Coupons (NOT available on Target's site! I had to do ALOT of searching for these!) Expire: April 12, 2009

This week Target has Gold fish crackers for $1.00 (WM regular price is 1.88)
They also have sponge bob fruit snacks for a buck.

Looking for more great deals!

I got a loaf of bread last night for 29 cents and Parker's soy milk for just over a buck! I was soooo proud!!!

ONE CENT Appetizer & ONE DOLLAR MEAL at TGIF

Purchase a drink at the bar and get a 1 cent appetizer. Then, head to your table and buy one entree get one for a dollar!

Click HERE

Valid: 3/20/09 to 4/30/09

Happy Cheap Eats! :)

$5.00 OFF Disney's Bolt Movie

Click HERE for a 5.00 off coupon for Bolt.

Wal-Mart has this movie on sale this week!

14.40 (sale price - regularly 19.95)
- 5.00 (coupon)
9.40 TOTAL PRICE

Enjoy a cheap movie! We bought this one to stick in Parker's Easter basket.

Monday, March 23, 2009

Logen Update 3/23

Things are still not great. We started a new med for seizures last week. He's now taking Keppra 2x a day and Topamax once a day for them. I am suppose to call St Louis tomorrow to see where to go next. We are going to be weaning from the Keppra and upping the Topamax slowly. We go to St Louis very soon, I am hoping (as much as I want Logen to get out of this funk) that he stays doing poorly for the next week so that the neuro can see this.

This is the 2nd week in a row that the OT has said his facial muscles are VERY tight. He hasn't eatten much since Thursday. Today, half a blueberry muffin and a few bites of oatmeal. Minimal food. Which, is not helping with the weight gain area. We are pumping him full of pediasure trying our best to sneak in calories where we can. He started running a fever, green snot, and a nasty cough (that can't be suppressed with RX cough med). I am taking him to the ped tomorrow morning, when I called today at 4 we weren't able to get in. He's not sleeping well. He's still tripping and falling on nothing. He seems very weak and tired. Which, could be from lack of food- but I think there's something more there that we are missing. His drooling has increased. I keep waiting for a major seizure that we see with convulsions, but haven't seen anything yet.

Please, Please, Please keep Mr Logen in your prayers.

The Real Deal

I now can access my email from my phone, so I haven't been on my actual computer that much. And, last week was one of my colleges Springs Breaks. This week is Logens and my other schools. Which means, I didn't get a break this year! Agggg
I spent much of last week working on my paper for Microbiology. I have 3 short papers due next week and some Psych stuff.

It's almost bathing suit season and I've been searching for one. I have never had much self-confidence and always thought poorly of myself. Trying on bathing suits has made this worse. I've gone through my days struggling with my "Earthly body". So, thats kinda where I've been at on all posts besides Logen updates. It's something i've struggled with for many years- I'm working on it. My hubby says other people on't see me the way I do. I wish for one day I could see what others do!!!!

Thursday, March 19, 2009

10% off at Lowe's

You fill out a brief form (name, address, email) and they send you a 10% off coupon. The deal is, it's for people that are "moving". You can also find this coupon at your local post office near the change of address request forms.
It has a unique barcode, so you can only use it once and the max discount is 500.00!
Click HERE

$10 off at Bath & Body Works (FREE possibility)

Here's a coupon for $10.00 off ANY Patricia Wexler MD Dermatology Product from Bath and Body Works. In store only. EXPIRES April 5, 2009. With this coupon you can find something for FREE! (I went in a bought a 10.00 item with mine- so it was FREE)

Click HERE

FREE Johnson & Johnson Little Green Bath Buddy Bar

Here's a coupon for 2.00 off 2 of the little green bath bar buddies. At Wal-Mart they are 0.97 and at Target they are 0.99 - so this coupon makes them FREE either way you go!!!

Click HERE to print.

EXPIRES April 1, 2009.

FREE Weber Grill Spatula!

There are only 7,000 of these available! Hurry and sign up NOW!!!!

Click HERE

Sunday, March 15, 2009

Parker Finally Says I LOVE YOU!

It's 2 seconds long, Watch It! My lil man would not say this for the longest time. He's only been doing it for the past week! We'd say I love you and he'd say yes (or no). I am so happy he says it now! And, it's SOOOO cute!

Sorry! More Logen Test Results

For the blog neglect. Last week was crazy. I was up from 6am Wednesday to 11pm Thursday. I had a test Thursday and I guess once I stay up for a while, my body forgets how to shut off. I also wrote 7 labs reports (was originally 6, but one snuck up on me!) Wednesday.

Logen's 'issues' last week were crazy. Today he's had a hard time walking. He's falling all over the place. He had a few days where he couldn't keep his drink in his mouth (he's on a soft nipple nuby cup, and he's been doing this since he was 3- he was never able to drink from a bottle b/c of poor suck). Saturday in OT, his OT said his facial muscles were very tight- something strange, they've not been that tight in a long time.

We kinesotaped Logen's mouth for 'trial' Tuesday. He held drool is for about 10 minutes (max). His SLP said as long as he does that, we will continue to try it. It peels off very quickly once he begins drooling, so it's not something that we will keep on. I will learn to do this once we perfect the method and placement of tape so that I can tape for feeding. This all depends on if it continues to work of course.


Logen has several appts coming up. We head to St Louis in the next 2 weeks for the Epilepsy Doc and Neuro. Then we head south to our Children's Hosp for Genetics and Endocrinology.
Logen had a bone scan done to determine to the age of his bones. At the time of the testing Logen was 5 years 3.5 months. His approximate bone age was 5 years. The conclusion was normal, but will be addressed at the Endocrine appt. Same with the fact that he's still wearing 4T and has been since Spring 2006. People are beginning to tell us he's getting skinny.
WHY? A lady followed me out of Wal-Mart last night to ask how old my son was, pointing to Logen. I told her 5. She said, oh. Turned and walked back in. Why do people do this? B/c he was walking funny? B/c he drools? I told girlfriend who told me I sould have gone back in and asked why she cared. I told her it didn't matter. That lady was actually nice, many of you know the rude and cruel comments you get.
Parker is doing well with 'no biting'. Tabasco only 4x since Febuary 15!
My Dad & Liz celebrated their 22nd Anniversary yesterday! My littlest Sis turns 14 today and Liz's birthday is tomorrow.

Friday, March 13, 2009

Recent Genetics Clinic Note

A lot has happened in the last week. I received a large packet of medical records on Logen to take to St Louis. I have several things to post- But, I'll start here-

Dear Dr F,
I had the opportunity to see your patient, Logen, in the genetics clinic here at ___. As you may be aware, Logen has a very complicated medical history. He has been seen by mulitple specialists including Neurologists and a neurogentic work up has been initiated. To date, he has had prometaphase choromosome studies, advanced micro-array studies, and chromosome 15 methylation studies. All of these were normal. In brief, then, there is currently no unifying diagnosis for Logen's constellation of problems.

In reviewing his case with his parents then, the major problem list at this point in time include:
1) Significant neurodevelopmental delays (particularly in speech production)
2) Asymmetric spasticity
3) Seizure disorder
4) Lipoblastoma of the thigh
5) Craniofacial Dysmorphisms (on my examination today, I felt he had distinct flattening of the midface, prominent epicanthal folds, and an upturned nose. Below the neck he had no striking congenital anomalies that I could detect.)

I discussed with his parents that he has a very good and thoughtful first round evaluation. A second-tier would be indicated. They were agreeable to this. Given the constellation of spasticity and seizures, I did do MECP2 gene testing and ARX gene testing as well. Also, given the lipomatous tumor on his thigh, I also did PTEN gene testing.

We will follow up with the family once these results are available. ..... I did also briefly broach the possibilty of a third tier of evaluations for their consideration. This would include a work up targeted more towards mitochondrial/metabolic disorders.


~~~~~~~~~~~~~~~~~~~~~~~~~~~

We found out on Monday that the tests above were *normal*. These were the ones we waited over 7 weeks on. He has an appointment to see an Endocrinologist and the Geneticist in early April. We will do the 3rd tier testing at that appointment. And, I'm sure it'll take another 2 months or longer to get those results back.

His Neuro has ordered a spinal tap. There is something (I can't remember- I wrote it down, somewhere!) in the CSF that can cause some of his 'problems'. The only way to know is through a spinal tap (which scares me....)

This week has been off. He's had seizures and his behavior has been very aggressive- he's not listening, behaving, etc. I spoke with a nurse from St Louis every day last week- thats why I just love them . They called ME to check on him. They are working on getting him in to see an Epilepsy Doc asap and the neuro in the same day. (B/c of our travel) Our dr has a 6-8 month wait list, so this isn't easy!

Wednesday, March 4, 2009

Logen~ Funky Stuff

Logen had a rough behavior weekend. I really think it's the Keppra. His PT didn't know we uped the med and she asked if he was taking anything for muscles problems. (can't remember her exact words) His feeding/drinking is in one of those 'down-hill' slumps. He looses his drink out the corners of his mouth and he's not chewing. Muscle weakness is a side effect of the drug- so I'm wondering if it's messing with his already weak facial muscles.
I spoke with a nurse in St Louis yesterday. Dr B is out sick- so I'm not sure when we will get the 'final say' on the meds. The APN felt it was time for a med change. I am pushing for this. I think we've given the drug a fair go. We are still having seizures and there are just to many side effects of the med to stay on it. It's making Logen 'not Logen'. My baby has always been a sweet, loving, complient little man who loves to eat. There are days when he screams bloody murder b/c hes mad (for an hour or longer), he doesn't eat or his eating is horrible, he just isn't himself. That's the best way to explain it. We don't miss meds- they are given at the same time everyday. We don't dare to mess with it! So, we are back to the original dose until Dr B gives further instruction. We had increased just the morning dose last week- so atleast it's not a major change. I cannot wait to get him off of this med!

Sunday, March 1, 2009

Logen

Logen's got infantigo! His seizures are on the rise. Neuro had us give Klonopin on Friday b/c of a weird 2 hr funk/possible seizure that happened on Thursday night. They won't increase the Keppra again b/c it's causing Logen to walk into walls and fall all over himself. This is a side effect of the drug. I wish they would just pull him off of it!!!!! His attitude/behavior has been 'not-so-great'. Also a side effect.
He's on an antibio for the Infantigo and doing well. His face has cleared up alot. The Dr said after 48 hours on the med he wouldn't be contagious, phew! It'd pass on as strep and nobody has a sore throat (yet) so I guess we are in the clear thus far.
I have sent off for the records to go from one Children's Hosp to the other. Once St Louis gets them, they will review and see whats next. We have already been told the next step needs to be a spinal tap. I just don't think we are ready to subject Logen to that.
Pray for Logen!

Thursday, February 26, 2009

How 'Bout Some Crack?

I couldn't help but share this. I know there's been some controversy on a pal's blog about posting baby 'butts', but I felt like this covered more than it showed. It's justified in my head :P
Lil man kept walking around trying to keep his pants up. He eventually just gave up on it. He's still in size 18 month pants too!! (and he's 27 months)

Wednesday, February 25, 2009

Double Standards

Here are some examples:

Milestone- Logen learned how to unbuckled himself in his booster seat yesterday. I know this when my hair is being pulled. I freak out thinking, "Crap, Did I really forgot to buckle him in?" I pull over, and buckle him in. A few minutes later, he's tugging on my hair again. I'm thinking, "Wait a minute. Logen, are you seriously unbuckling yourself? YAYYYYYYYYYYYYYYYYY!!!!!! Way to go big man! I am so proud of you."

Realization: Had Parker been tugging on my hair; he wouldn't have gotten a "yay, I'm proud of you" He'd have been in trouble and a speech about how "We don't climb out of our car seats in a moving vehicles, blah, blah, blah"

So, what do you do in these cases? Is it fair to praise one child for something and punish the other b/c they 'know better'? Do we praise when Parker is not around? This (and there have been and will be many more times when similiar things will occur) is HUGE for Logen. He was able to isolate his pointer finger, turn his head to look down, and PUSH hard enough to get the seat belt unbuckled! Holy Cow. Thats amazing!!!!!!! Dangerous, yes. But he's only doing it (atleast today!) when we get into parking spots. And, you can bet he's the first to be unbuckled!


~~~~~~~~

Logen bit Parker last night. Parker cried b/c it hurt- Logen nearly drew blood. He bites hard. Since Tabasco round 1 Parker has not bitten. He's been warned and he cries histerically 'no sauce'. So, Parker says-- 'Bubba bite. Hot Sauce'. Adam and I were like, "oh. hmmm." You see, Logen doesn't quite feel (nor taste) like you and I. We both knew it wouldn't bother him. But, again, do you do it to one child and not the other? I felt comfort in the fact that it wouldn't burn Logen's tongue (just in case he doesn't really know what's up). I put a tiny, tiny amount in a dropper and put in on his tongue so Parker could see me. Logen didn't cry. He didn't flinch. Adam & I knew that this was most likely the response we would get, but Parker was staring at him with this look like, 'wait a minute. Is that the same bottle of sauce you put on my tongue b/c it hurt and I cried?!?!'

I just don't know on that one. I think it was a good example to set for Parker. If you bite, you will get nasty stuff on your tongue (that doesn't upset your brother).

Being a parent is no simple task. We face challenges every day, in every way. And, like all (good, loving) parents- we do what we know to work through them. But, sometimes I'm asking you--we doubt ourselves. So, I'd like to know what would you do?

Trashy Read # 2


I'm working on finishing the 'leaked' 5th book in the Twilight series (it's online if anybody is interested... it's GOOD!) But, my next trashy read is another Chelsea book. I have so much serious-ness in my life- I'm going with total crap to read!!! I 'you-tubed' her and she's got some funny stuff out there! I'll post one here. Just don't allow your kids to watch them... :)

Suggestions to Maintain a Healthy Level of Insanity

1. At Lunch Time, Sit In Your Parked Car With Sunglasses On And Point A Hair Dryer At Passing Cars. See If They Slow Down.

2. Page Yourself Over The Intercom. Don't Disguise Your Voice!

3. Every Time Someone Asks You To Do Something, Ask If They Want Fries With That.

4. Put Decaf In The Coffee Maker For 3 Weeks . Once Everyone Has Gotten Over Their Caffeine Addictions, Switch To Espresso.

5. In the "Memo Field" Of All Your Checks, Write ' For Marijuana '.

6. Skip Down The Hall Rather Than Walk And See How Many Looks You Get.

7. Order A Diet Water Whenever You Go Out To Eat, With A Serious Face.

8. Specify That Your Drive-through Order Is 'To Go'.

9. Sing Along At The Opera.

10 Five Days In Advance, Tell Your Friends You Can't Attend Their Party Because You Have A Headache.

11 When The Money Comes Out Of The ATM, Scream 'I Won! I Won!'

12 When Leaving The Zoo, Start Running Towards The Parking Lot, Yelling 'Run For Your Lives! They're Loose!'

13. Tell Your Children Over Dinner, 'Due To The Economy, We Are Going To Have To Let One Of You Go.'

And The Final Way To Keep A Healthy Level Of Insanity
14. PICK UP A BOX OF CONDOMS AT THE PHARMACY, GO TO THE COUNTER AND ASK WHERE THE FITTING ROOM IS.


** I so wish I was brave enough to do every one of these. How funny would that be?? I'd be the ding-bat to get arrested though... **

Monday, February 23, 2009

I Dropped It!

That darned Calculus class is out of my head for the next several weeks. I dropped it. After I realized I needed to devote a lot more time to microbiology than I was- I knew cut backs needed to be made somewhere and Math seemed like the appropriate place to cut.... I hate that subject anyways. I'm only enrolled in 10 hours now, and much relieved I must say!

Phew... I need sleep.... Long day ahead! Love & Hugs Blog Fam!!

Friday, February 20, 2009

Funny



After the Twilight series I needed a book to read. Miss Julie (Parker's teacher) brought me a friggin' funny one. It's absolutely filthy!!! It was a quick read (and didn't totally suck me in as the Vampire's did...) I so needed to laugh! I read a few chapters to Adam last night, he even got a kick out of it. It made me feel good knowing there really are trashy, but composed women out there. Why I want to know this... I don't know. If you want a good laugh and to live vicariously in the drunken life of a female brain- read this one :P

Wednesday, February 18, 2009

Sleepless Night

Right after I hit post last night, things went WAY down hill! Parker woke up with a cough that got REALLY bad. We did the steam room thing and breathing treatments. Luckily, my Step-Dad is a respiratory therapists- and he was working last night. So, I paged him- he was able to listen to Parker and have the input of some co-workers. We did Xopenex once an hour, Tylenol Cough, Humidifier, steam/cold bursts- I think that was it. It was rough. We opted not to go to the ER b/c the only thing different they would have done was an IV steriod.
I took him to the Dr today- he's got Croup w/ Strider. We added a steriod and will keep up the Pulmicort (2x a day) and Xopenex (every 4 hours).
His eczema is also looking yucky on his face, so we got a steriod cream to apply 2x a day.
Little dude's going to be so hyped up on Steriods.

* Logen's Keppra was increased Tuesday as his seizures have increased. We didn't see any today. Yay :)

Tuesday, February 17, 2009

Parker + Tabasco = Good Choices

Odd, I know. Abusive- I disagree.

Parker bit the snot out of Logen on Saturday. Bruised the poo out of his arm, nearly brought blood. He was also 'kicked out of school early' Friday for biting 2 children, 1 who did bleed- on the leg! By Saturday Adam & I were searching for things to do next. My mom said Tabasco worked for me. I was a 'little sh*t', just like Parker... so was Adam. Now you see where Parker came from?! Paybacks! haha

Back to the story-> we gave him less than .5mL of the hot stuff. Poor little man cried and cried. He had milk in a sippy on the table (but he didn't go for it and Adam and I didn't remind him to drink) nor did we cuddle him. Let me tell you how much that broke my heart. His face was so red and he was screaming. I felt like the worst mother in the world! He sat in Logen's chair all by himself and cried it out, making terrible little faces at us.

(Totally knocking on wood here!) He has NOT bitten since!!!!!!!!!! We gave gummies at daycare yesterday for 'good choices'. Today I hung gummies from his cubby where he could see them all day to remind him to make good choices.

When I got to daycare today, one of the girls in his class ran up to me and said- "Parker didn't bite today!". 2 other kids commented on his 'no biting status'. We've made a HUGE deal about his great choices- so I am hoping it sticks! Poor kid isn't going to have any friends if he bites!

He also 'pee-pee'd' in the potty 2x today at school :)

Hmmm....

I realized in the past week that maybe 13 hours (with Calculus and Microbiology!), Motherhood, a biting toddler, and a SN Kindergartner don't mesh together quite like my little mind mapped out. Of course- who could picture their 2 y/o biting?!?! haha

Today, we got our Micro tests back. The average was a 68! Doesn't that tell the teacher something???? I was relieved to get a 71. Pathetic, I know. I have NEVER gotten a C! I should be in tears! I'm actually happy about it. When he told us the lowest grade was a 35 I was flipping out thinking, "It's mine!". He even had a 19 in one of his other classes. Again, does that not tell the guy something?!?! I won't make it a habit, I promise! Totally going to screw up my GPA. Maybe I can pull things together. We can drop 1 exam. Maybe this will be my lowest, I cannot help but think it won't be.

I read the Twilight series (4 books) in less than 2 weeks. Maybe I should have put that off until Spring Break.... I recommend you submerse yourself in those books too. I passed them off to 2 other people, 1 'hates' me for it. She's adicted now. I think it's great b/c now she knows how I felt. :P

Friday, February 13, 2009

Logen & His "Talker"


I found Mr Logen chillin' in the kitchen the other day with his talker. I couldn't resist taking a picture of it!
He does pretty good with it. If he had better hand coordination, I think he'd be zapping through it very quickly.

For those of you that have asked: Logen uses the Vantage Plus by Prentke Romich. The device uses the unity language, which is different and takes some getting used to for those of us who already have our language mapped out- but I'm learning with Logen!

More Seizure Activity

My little Logen! He had another at school this morning. Followed by buckets of drool, tongue clicking, and a pale face (taking about 30 minutes to regain color).

I have heard back from St Louis (I also put in a call to our state hospital's Neuro) The nurse said it sounded like time to increase meds. I told her my concerns about that. I do NOT like the Keppra and I am not happy with increasing that medication. 1) He doesn't eat to well on it. Although his appetite has come back for the most part- he's still not gaining any weight and hasn't in a year
2) Behavior! It makes him crazy! I don't like the way it affects his behavior/attitude

She was going to talk to the Neuro and call me back shortly.
I want seizures under control for good!

Thursday, February 12, 2009

UGH!

Logen had a seizure at school this morning. :( He went to the nurses office for a bit to re-gain color and 'perkiness'.

I look like I've been hit by about 10 Mac trucks, worse- I feel like I've been run over by about 35 of them. You know it's bad when a dear friend says you look rough. It has been the week from hell. Pardon my language.

Logen has a Dr's appt this afternoon, will update soon.

Happy Note: He made a 6-hit sequence on his "talker" w/ Ms Gail yesterday!!!!!!! More than once... he did it before he put in every single puzzle piece. Not b/c she asked him to, but b/c Logen wanted to! I was so stinkin' excited!

Tuesday, February 10, 2009

A Seizure & More Biting

Logen has increased his drooling lately. He's also had a few episodes of 'foamy' vomit after eating. Not more than an hour after talking with one of his therapists about not seeing any more seizure activity, guess who has a seizure?!?! Yea... go figure. I think we also need to do a more complete swallow study. He has a barium study scheduled for March, but I'm thinking we need to move it up. He sees the Ped Thursday for a well child check- at least now we have a few things to talk about. :(

Logen has started biting at school! What the poo?!?!?!?! He made many attempts to bite friends today and actually bit 2 teachers! I assure you, we are not taking any biting in our house lightly. I don't think our method of action (time-out and a talking to, then apologizing [by sign or otherwise]) is working... we are working on this.

I think both children biting has something to do with frustration over lack of communication. I think that Logen has so much to say, Parker does as well- and well- things just aren't being communicated.

Bodily Functions

Parker pee-peed on the potty this morning (for the first time EVER at home!). We did a happy dance and clapped and he got a 'ummy'. (AKA gummy worm) He also talked me into stopping at the Golden Arches for a sausage biscuit.

Moral of the story: Pee in the potty

He peed in the potty twice at daycare today (halfway on the floor once.) His response to the floor mishap, "Oh".

Tonight I sit completely freaking out about exams, the stinker takes off his pull-up and poops on my floor. It hits the pillow on the way down. This incident took maybe 30 seconds. Not long enough for me to catch it. So, I have a poop mess on my floor and pillow (this is why I love not having carpet!)

Little dude goes and finishes on the toilet. He squeezes out a drop (pellet, whatever) and requests a 'ummy' and the dance. We did it, of course reminding him that we START and FINISH pooping in the pot! Silly kid!

Monday, February 9, 2009

Math, Oh, Math

I'm surrounded by NUMBERS and going NUTS! How many days have I been in Calculus H***???

When I went in to ask about something I missed Monday (of the ice storm week) b/c Logen was sick. She looked at my grades and complemented me. She said, "If only all my students were like you"!! Her grandson goes to Logen's school- we ended up talking for a while (so now she knows our 'story'). I think she likes me! She's been very kind ever since!

So, I *think* she offered me an extension on my test. (waiting for the email to confirm) I mentioned 'babysitter issues' for tomorrow afternoon (therapy schedules, my classes, my mom is out of town, etc) and just asked if I could schedule a time to test. She said, why don't you just take it before class on Wednesday? I was like, um... ok!

Saturday, February 7, 2009

Math Bologna

I'm not sure I can do it. Math, seriously scares me. How I made it through to the point I am now- I just don't really know. I am working on me review and discouraged. I want to drop this class. I could go to Isis and drop it this very moment. I will have to take it eventually. I'm just not motivated to do it now. I feel like a failure when I miss problems!

I know we've got bigger fish to fry. But, I can have my pity party over 16 weeks of mathematical hell. I'd rather be suffering in French again. At least there's a concrete answer/reason for that! I'm not ever going to need this crap again!

Doctors... Ugh!

I saw a real idiot this week. He mixed up my urine with somebody elses. I know what color my pee is! And, he argued with me! (I'll post more on this later...)

Why I want to be a Doctor and get bashed, I'm not sure. About the bashing part that is. I bash them. You know you do it. We all say, "I hate Dr's", "They are stupid." Why am I putting myself through educational hell to be told I am stupid?!?!?! And, it's only going to get worse. Oh, boy!

I'm avoiding studying for a Calculus test. How do you study for math. I really dislike math, incase you didn't know. I post frequently when I avoid things. There's a pattern there. I am sure I will post some pictures tonight. I do that too.

Congrats! You failed your eval...

After Parker's OT re-eval this morning, we got a congrats (how many of your therapists can jokingly say that to you? haha) For failing. Mr Parker is in the 5%. He really failed. I was prepared for this one though. I figured he'd end up in therapy eventually.

So, hopefully now that he qualifies for OT and Speech- we can get some state aid in the form of TEFRA (it's not income based, we just pay a small premium- but you only qualify for this when you qualify for 2 therapies). B/c we know how bad insurance sucks! They'd deny him, like Logen (who, obviously needs therapy!)

I am happy with this decision b/c I think it will benefit him (and me!). I am not sure where in the world I will pull time to take him in with our schedule already so insane, but we do what we need to do.

** Dallas-- T and I decided P & S are alot alike! (esp after this mornings 'interesting' eval) Happy late bday to you & S!!!!!

Friday, February 6, 2009

Updates

My Internet finally works again! YAY! We managed to keep our power most of last week, only losing it for a few hours. My mom lost hers for 5 days. We have friends that are still w/o power. FEMA has stepped in to help our area. It was a nasty ice storm! I've got some neat pictures of our home. We had icicles as long as Parker is tall. The University looked like a tornado hit the tops of all the trees, it was probably the yuckiest I've seen "in person".

Crazy stuff going on. I thought Parker was going to be kicked out of daycare for his biting today. I had a meeting with the site and program Directors this morning. Talk about anxiety! I am at a loss. I don't know what to do with him. He's got an OT eval in the morning. I think he's got some serious sensory issues. He was in the 16th percentile on his last eval 6 or 8 months ago, which put him like 1-2% away from qualifing. He also qualifies for Speech, there are some delays there. Insurance denies that, they say he's too young. They are still denying Logen too- who would guess a 5 y/o non-verbal child NEEDS speech. Idiots. I hate insurance! I expected 'therapy' from Parker, since he joined the world a little early. Just add another thing to our 'plate'. Why not? Apparently... I can handle it. HAHAHA

Any tips for biters? PLEASE tell me! We are DESPERATE here!

I have a Calculus test Tuesday, Paper due Wednesday, and a Microbio test Thursday. Not to mention we missed all of last week b/c the area shut down with ice. I am going to go nuts this weekend. Just shoot me now.

No word on little Logen's results, yet. Trying to get more therapy. I wish we had more therapists around here! Or better yet, less children with the need for therapy. I am sure we can all agree with that one! I wish my Logen wasn't in such need.

I'm having some 'me stuff' issues. We've been internet-less for the last week- but I'm not sure how much I'll be posting. I'm working on things. It's just hard.

Monday, January 26, 2009

Happy Birthday Baby!















Happy 28!!!! We love you very much! And, hope you get rid of the tummy bug quick!

Slippery!

We're all 'iced' in here! So far, Fed-ex hasn't (or ever has since Adam has been there) closed due to bad weather. Impassable roads and major power outages are expected. I think the latest forcast was about 1 inch of ice.

I passed the tummy bug onto Logen (who woke up in poop and transferred it to our bed at 4am). Adam now has the bug and we are keeping our fingers crossed that Parker doesn't end up with it. No power with sick family members... a bucket of fun!

I'm worried about Adam having to be on the roads tomorrow. So please say a prayer for him.

Logen & Parker's schools have been closed (and closed early today) for tomorrow. If the college is open, class will go on with out me (I didn't go today either... I felt icky!)

So, that's our Monday! It's Adam's birthday too!

Saturday, January 24, 2009

A Family In Need Of Our Prayers

The "H" family lost their son last night. "K" would have graduated in 2011.

"K" was in a 4 wheeler accident Tuesday and was airlifted to Children's hospital due to a brain bleed. Dr. "H" (K's dad, also a Dr) flew in a top Neuro Surgeon from Florida, but the damage was to much. They decided to take him off the vent last night at 10:30. I was told he went quickly and peacefully to be with our Lord. Please pray for the "H" family and their friends.

Hug your family today, remind them that you love them, and be thankful for all of those in your life.

Third Day, Revelation

Friday, January 23, 2009

My background isn't 'stretching' like it usually does when I create a new one. I'm working on it. :P

I *finally* uploaded my camera to the computer! I'll upload Logen's surgery pictures this weekend. I'll post a warning above them so that those of you who don't like yucky looking things won't scroll down.

Wednesday, January 21, 2009

OBGYN and Cardio in 45 Minutes!

Can you see both of those Dr's in that length of time?! I think I beat a record!!!!

My CT scan did not show a tumor on my adrenal gland (Praise God!), however my Cardio isn't going to rule it out b/c the scan 'scans' in cuts, so if there's a small one it can miss it. Since my Momma had one of these and I show many signs, we will keep a close eye on things. For now, I will stay on my 'old fart' heart medicine.

It did show Kidney Stones! I've been thinking I have a UTI since Logen was hospitalized in Dec b/c of back pain, 'stabbing' pain from my pelvic area out of my 'girlie parts' and just all over 'ickiness'. I've been eating Uristat and Advil. It was really bad Tuesday night, so I thought I'd better call my OB and go in for a 'pee test' to get an antibio. They tested my urine (it was done yesterday, but somehow it got 'confused' [long story!] and I had to re-test today... I'm a good 'pee-in-a-cupper'), it showed a moderate amounts of blood (it's not that time) and a few other things, but no leukocytes (meaning no infection).

Long story short. They gave me the urinalysis and I ran next door to my cardio appt. He gave me the CT results. So, I went back to the OB and they referred me to a Urologist. If I start to pass the stones before I get in, I am to go to the ER. The Doc said they'd at least have a copy of the CT and be able to give me Morphine for pain. I'm hoping they will just surgically remove them.

So, I'M FREAKIN' SCARED! I don't wanna go pee. I don't wanna drink. I don't wanna pass a stone (much less more than one!) I sit here doing homework and am thinking, oh... no. I gotta tinkle. No, please, please don't let me pee stones. Hold on there buddies (enemies!). Stay up in my kidneys.

Dear Lord... I need peace! I love you :)

Monday, January 19, 2009

Logen's Pathology Report

The 'tumor' cells/tissue came back consistent with those of a 'typical' Lipoblastoma. Which means.... it's not cancerous!!!!! Yay Logen!

The area is still swollen (or they didn't remove all of the tissue), so the nurse said to watch it over the next week (to 2 weeks). If the swelling doesn't go down by 3 weeks post-surgery, there could be reason for concern. So, for now- we will just watch it.

He was up wrestling, tackling, climbing, etc with kids on Saturday night and by bedtime the poor little guy was really hurting. He's not been as active as he was Saturday night since pre-surgery.

Logen has really been motivated to use his talker (augmentative communication device) lately, for that we are all thrilled!

Only 5-6 more weeks of waiting for results on the genetic tests! Keep Praying!!!

** Camera has been found, on top of the fridge in the garage (it was the only thing on it, so it stuck out). Don't ask me how it got there. I have NO clue! **

Friday, January 16, 2009

Good News For Us!!

Excerpt from article here.

The package delivery company said it will cut pay for senior executives and freeze 401(k) contributions for a year. On Jan. 1, CEO Smith will take a 20 percent pay cut, and the pay of other top brass will fall by 7.5 percent to 10 percent.

FedEx will also implement a 5 percent pay cut for all remaining U.S. "salaried exempt" personnel, which excludes hourly workers such as couriers and package handlers. Mechanics and pilots are also excluded from this category. FedEx said it has about 36,000 salaried exempt U.S. workers.

Combined, the company expects the measures to save $200 million through the remainder of the fiscal year ending in May and $600 million in the next fiscal year.

What does this mean for us? Adam will not loose his job. His pay will not change (the guys at his level will still get their raises- cost of living & performance). They won't match what we put in his 401K- but we will take it!!!! He is likely to get all the over time he can handle since they are in a 'hiring freeze'. Thank you Dear Lord!!! How we love you.

I was impressed that the "big boss" did this. The man that took the 20% cut- this 'plan' came from him. Rather than hurt the guys who do the hard labor, the 'management' is taking the hit.

Useless Random-ness

These came through in an email. I thought I'd share the useless info with you :)

The liquid inside young coconuts can be used as a substitute for Blood plasma.
*
No piece of paper can be folded in half more than seven (7) times. Oh go ahead...I'll wait...
*
Donkeys kill more people annually than plane crashes or shark attacks.
*
You burn more calories sleeping than you do watching television.
*
Oak trees do not produce acorns until they are fifty (50) years of age or older.
*
The first product to have a bar code was Wrigley's gum.
*
The King of Hearts is the only king WITHOUT A MOUSTACHE
*
American Airlines saved $40,000 in 1987 by eliminating one (1) olive from each salad served in first-class.
*
Venus is the only planet that rotates clockwise.
*
Apples, not caffeine, are more efficient at waking you up in the morning.
*
Most dust particles in your house are made from DEAD SKIN!
*
Pearls melt in vinegar.
*
It is possible to lead a cow upstairs... but, not downstairs.
*
A duck's quack doesn't echo, and no one knows why.
*
Dentists have recommended that a toothbrush be kept at least six (6) feet away from a toilet to avoid airborne particles resulting from the flush. (I keep my toothbrush in the living room now!)
*
Richard Millhouse Nixon was the first U.S. president whose name contains all the letters from the word "criminal." (who thinks up this stuff???)
*
And the best for last..... Turtles can breathe through their butts. (I know some people like that, don't YOU?)

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