Just A Mom

Lymph Node follow - up

2010-10-06T07:48:00.000-07:00

Well it's been a while....but this is the bruising I was left with 10 days after the IV. The guy that did the IV is ingrained in my head and he will never touch my arms again! He put the IV in my bicep instead of the crook of the elbow!

This is the CT scanner I went in....conclusion was that it was Lymph and not salivary.
Next I received orders that I had to go in for a FNA biopsy...which is with a fine needle. Except that when I arrived the doctors decided that it was too hard and fixed to get a needle in to so they were going to have to actually "nick" me and go in with a biopsy gun.

If you haven't had the pleasure - this is similar to the biopsy gun they used. AND it has a very loud click almost like an ear piercing gun. They put that in to the neck and it takes a tube of whatever they are biopsying out.

As you can see somewhat - my neck was completely swollen and I'm sure the needles didn't help. As of now - October 6th - they still do not know what is wrong or what was wrong. I go in month for check ups. They tested for TB, Cat Scratch, Fungal infection, Lymphoma cancer and three other cancers. Well 3 of the 4 came back negative and we need to give an entire lymph node to check for Lymphoma. So I stayed on anti-biotics for about 6 weeks....now I'm due to go back to the doctor in 2 weeks for another check up.....

sssshhhhh.....I haven't told them that they started growing again...I'm going to just pretend they don't exist!

Infected Lymph Nodes

2010-08-18T15:49:00.000-07:00

So with in a matter of a week my lymph nodes in the neck went from non-existent to over 3 inches long and hard as a rock. I've seen 4 doctors in 6 days and spent all of today at the ER. I went to a specialist this morning and he called the ER at Chesapeake to get me in. He talked to the doctor there and told him everything he wanted.

I didn't know I'd be poked all day and spend a day there.

In this picture - you can really see the swelling but the nodes are so swollen they've started bruising my skin around my neck. It reaches up behind my ear, over the jaw, and across my collar bone.

I have given more blood than ever the past few days. We also had to hook me up to the contrast on the CT scan. They were trying to figure out if it was salivary glands or lymph nodes. And if there was an abscess in any of them. If there was an abscess then I was being admitted and going in to surgery immediately. Let's just say it was a long day waiting........

Now I've seen lots of blood taken with miss Haven...but I've never seen blood go in to these glass jars. The doctors took every test possible to figure out what was wrong with me. These are special tests that will give the doctor information on the type of infection and how it started.

After about 6 hours and a day of needles I'm informed that I officially have 3 lymph nodes that are infected and one filled with fluid. BUT no abscess!!! YEAH!!! Still on a search to find out what is wrong with me and what caused the infection I had to get one more poke. So I got a TB test and will get that read on Friday. All other test results will be in on Friday. I can't even remember how many doctor appts I have next week with all this crap.

I am exhausted and plan to be in bed by 8pm. Thanks everyone for the well wishes.....I'm waiting for my antibiotics to arrive and then I'm knocking myself out!

Awesomeness

2010-06-22T17:49:00.000-07:00

Whew hoooo....we had an awesome storm tonight! It started with small thunder and it was so hot and sunny and humid. Then I let the dog out and started getting sprinkled....before we could make it to the door we had a downpour! My dad called a minute later to tell me to look out the window and we had hail...and the hail kept getting bigger and bigger until it was chunks of ice!

The winds were insane! Let's just say my front garden I have worked so hard on all spring has been ripped out by the roots and flowers are laying on the sidewalk. The neighbors grill is laying flat in his back yard and trashcans are everywhere! Then the tornado sirens started going...so we were prepared to head to the basement bathroom. Biggest concern was the cars - ours were fine but my friend about a mile from me has hail damage.

The glass that used to be in that table was damaged from the last storm.

Then wha la....the sun was out - humid as ever and a beautiful rainbow! Awesome night. So glad I wasn't stuck on the freeway tonight.

Photos

2010-06-15T12:40:00.001-07:00

My aunt and I have been scanning old photos - as she does this ancestry.com stuff. So I've been giving her photos.....my mom and dad had a few albums of some photos I didn't have. Sometimes they are hilarious just to look at!

Somewhere in Florida...me, my cousin behind me, my two sisters and then my brother....

Oh the 80's......middle school.....me and my friend Tina

You know those pictures you thought were cool that come back 20 years later and aren't cool at all.....well this is NOT one of those...this one is freaking cool!

Cheerleading.....what fun years.....I did football and wrestling

My baby cousin Erin....she was so sweet and innocent then...so cute

High school graduation

A picture of my sister and I on Santa's lap because my dad wouldn't stop whining for one.

The family.....this had to have been in 2000

My grandpa and I on a trip to Catalina Island

Me and my bro at my wedding - he loves me

Camping at Death Valley in January --- not recommended as it's freezing!

My mom and I somewhere in a desert.....not sure if it's Utah, Nevada, or Arizona.....

ending a debate

2010-06-07T08:28:00.001-07:00

It has been 3 weeks of this debate!

The below IS my sister Dusty! Not Nikki! I put this up here so family can make it bigger and now we can end this one!

Bring on the next one in question!

Why? Why?

2010-05-27T20:08:00.000-07:00

We had some awesome skies tonight....it went from about 95 degrees to 60 degrees in about an hour. Still no storm but lots of thunder and lightening. I really want a major spring/summer storm.

Love the purple pink orange colors. I just sat outside and watch the sky change

So I haven't really been able to do anything physical since my surgery last November. Then it took so long for the bones to heal back together that I had to wear a bone stimulator for 2 months at 10 hours a day. Finally my bones healed but now I have so much pressure on the small toes that I can barely bend them.

Almost 2 weeks ago I received my orthopedic inserts. THEY HURT! It feels like something is stabbing my foot at the arch. Not only that but now I'm allowed to work out so I started off slow and it's been almost two months and my foot goes completely numb after 30 minutes. I've tried to stay on my heels and that does not work.

So I went back in and talked to her about it.

Yes - my big toe did shrink. It is now smaller than the 2nd toe - due to the delay in the bone healing. Then because she cut the soft tissue between my toes the foot now goes numb due to more pressure falling on those toes. You can see the difference in the picture. The toe is definitely straight....but my little toes are crooked. I honestly feel like my 2nd toe is dislocated now. There is a dimple between the joint. But I can't get it back together.

So I will go back in on June 1st and get a shot between the toes to try to heal that. Uuuugggg....I'm so over my foot and the doctors asks me if I'm ready to do the left one!

NO THANKS!

Flowers.......

2010-05-09T17:47:00.000-07:00

Well...I should probably take photos of the flowers before 8:30 PM......but when do I do it normal!

These were my Mother's Day gift....I'm not a flower in a vase girl...they just die! I love plants!

These are blooming amazingly after only having them in the ground for one day. Let's hope this strange cold weather and severe winds don't hurt them!

These are my Rhododendron.

Gardening...is it done yet?

2010-05-06T10:17:00.001-07:00

Everytime someone asks me what my hobbies are or what I like to do I just can't answer. I don't have a clue....you become a mom with a sick child and really you don't think about what YOU like to do anymore.....it's all about your child......

But then after another round of yard work and gardening I realized....I like to garden! I am constantly out there with my dad planting flowers, trees, digging holes...or something of the sort. So there - that's my hobby! I love gardening thanks to my grandpa and my dad....both love to do it. I'm also a freak and love to mow the lawn....

So Haven and I started a garden about two years ago. It was a small garden of randomness. Then she got really sick and we lived at the hospital for a long time. Last summer I never even looked at the garden...it just became an overgrown jungle of mess. So last weekend I decided it was time to bring it back to life.

I spent almost 7 hours out in the dirt on Sunday with lots of digging to do. The above used to be grass......so I had to take all that off and make a dirtbed.

Then Haven and I went to the store and picked out lots of pretty flowers. She prefers the annuals - which is fine they are only a dollar. But I'm not doing this every year...so we mixed perennial with annual. She helped with picking the spots she wanted the flowers in and I planted them.

Then we had the other side to do....my mom and Haven helped with this side. Haven even got in there and dug out the grass. I really wanted Bleeding Hearts - so those are planted in the middle (naked area). Next year these should look beautiful.

So now I have my cherry tree blooming, peach tree blooming, and a bunch of flowers in the front. Need to figure out what else I can dig up!

Life in Perspective

2010-04-30T10:59:00.001-07:00

Yep...sometimes you have to put it in perspective.....even when you think your life is hell (my foot below). Sometimes you just need that little reminder!

My daughter gives me the reminder constantly that no matter what you want to bitch about or who you hate or how bad something seems ---- it can always be worse. She takes her chemo and surgeries with a smile.....this is what I have learned from her.

The above video is of some members of the Wounded Warrior Project - they have fought for our country and freedom and they are truly heroes!

Foot

2010-04-30T10:46:00.000-07:00

I can't believe I'm still dealing with my foot!!!! So I go to the doctor and get my latest x-rays. Shows that the bone is FINALLY healed but there is a lot of calcium deposit around it. I also inform her that during my workouts at about 15 minutes my foot goes completely numb and by 20 minutes I can't even stand on it.

Well.....the toe that was broken and then rebroken has shrunk. Actually the bone in the toe is shorter....so now I have been fitted for thingys to go in my shoe. I'm hungry so I don't know the word. Those will take 3 weeks as they have to send them up to NY to be made...then I go in and try them out. I really just want this to be done.

I have also decided to try my 7th doctor here in MD. The doctors for Haven are awesome...I just can't find one to figure me out. So I go and then I get pissed off at their stupid guesses and wait a few months, find another doctor and try again. I have had sooooo many mammograms, ultrasounds, MRIs, lab work it's ridiculous....and all they can say is "I don't know"......two have told me to get pregnant (as if that's the miracle cure) ....and one blamed my migraine medication but forgot to ask me how long I'd been taking it and when I informed her she came back with "I don't know".....well....we're going on 2 years now and I would like to hear something other than "I don't know".....

Locks of Love

2010-04-26T10:06:00.000-07:00

WHAT IS LOCKS OF LOVE?

Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis.

I am excited because we did our 6 month check on our hair length today! I'm now at 12" of hair available to donate! We don't donate until October.....so guess I'll get back to taking my Biotin!

My cherry tree

2010-04-06T17:49:00.000-07:00

Beautiful Cherry Tree --- I'm so happy my trees actually grew this year! It's taken 3 years to get one to survive and now I have 2 of them.

Spring Time

2010-04-03T08:17:00.000-07:00

Finally Spring...I'm loving this weather and look at my beautiful peach tree. I was sure this tree would die since all the other trees I tried didn't work but it is blossoming beautifully. Guess I can actually plant something that will live! Now time to work on the rest of the flowers.

My wonderful foot is still broke and sandals don't fit on it yet....which is driving me crazy with this warm weather. I hope it is healed by summer.

I'm actually excited it's time to start mowing the grass...after 3 blizzards I'm ready for the sun!

X-rays for the foot

2010-03-23T10:21:00.001-07:00

Did the doctor thing yesterday from 7:30 am - 5pm ---- ran to have dinner at mom and dad's and completely blacked out by 6:30pm with an extreme migraine. I woke up around 11pm and didn't even remember coming home!

I had x-rays on my broken foot this morning. It has been one month since I started using the growth stimulator and now 5 months since surgery.

It is still broken. Some of it has healed together, so.......back on the bone stimulator for another month and x-rays again on April 27th and no exercise! I'm so not having any more surgeries!

Finally a new phone....again

2010-03-10T19:44:00.001-08:00

WOW.....so Microsoft bought the "Sidekick"....and DESTROYED it. I got my new sidekick in June - when we got the free any phone sign up offer....

Three times since June Microsoft has come in and sent a text of an "upgrade" which really means - we're about to wipe out all your contacts, lose all your emails, and obliterate all your text messages! Three times I've had to go back in and enter in all my contacts and wait for my phone to come back to normal.

This time they completely killed it and it required a complete reboot by a customer service person...that was it! I am done with Microsoft abuse of my phone. After about 30 minutes of arguing with the phone company I got an upgrade - of a new phone! One that Microsoft doesn't own....Blackberry.

So now - after about 5 years of having a Sidekick I need to learn to use this phone. I'm not a fan yet - I don't like the keyboard. I have to figure out the functions and the ringers are horrible. But even though I don't know this phone I know Microsoft can't wipe it out!

Now I wait for it to be loaded up - they said 2 - 48 hours....big difference in time and hopefully I won't go 2 days before I can make a phone call. But I'm happier already!

Neurology

2010-03-10T06:11:00.000-08:00

Should they be involved in a ROHHAD child?

Gmail spam...WHATEVS

2010-03-03T12:34:00.001-08:00

Anyone else get this email that is a gmail account holder???? As if I'm going to reply!

Dear Member,

We are shutting down some email accounts and your account was automatically chosen to be deleted. If you are still interested in using our email service please fill in the space below for verification purpose by clicking the reply button. Learn more

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Warning!!! Account owner that refuses to update his or her account within Seven days of receiving this warning will lose his or her account permanently.

Thank you for using Gmail !

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GMAIL

Tired

2010-03-03T05:50:00.000-08:00

Whew....last night I finally got to bed around 1am. I worked on Haven's blog for about 2 hours and then got stuck watching Purple Rain! It made me laugh a lot......

Around 2am I had a daughter running through the hall to the bathroom with severe diarrhea. She said nothing was hurting her but she was hungry. After about 30 minutes of that and cleaning her up I turn around the dog is throwing up! Not only that but the dog has blood on every single one of her toys from her teeth falling out. So I'm constantly throwing those away and she drools a lot because of her teeth. It's like kids gone wild last night.

This is supposed to fix me

2010-03-01T17:30:00.000-08:00

Well....this is what it is. I have to wear this 10 hours a day for 30 days. Then after 30 days I will go back in for more x-rays and HOPEFULLY my bones will have at least started to go back together.

Luckily or I guess I should say hopefully this IS helping my foot because after only 5 days of using it Haven stomped on my broken foot during a Wii game. I went down to my knees and she kept right on playing. Then decided to scream about beating my score!

Somnambulism

2010-02-22T06:12:00.000-08:00

That is the official medical term.......and I can't believe we're doing it again....I thought it was over!

I spent 3 hours last night trying to convince Haven to stay in bed and not wander around the house. I thought I was going to have to tie her down. I get back in bed and hear banging around and doors slamming then she'd start yelling for the dog - who is terrified of her when she sleeps.

I'm exhausted!

Sleep study March 6th ---- I bet anyone $100 she doesn't make a sound during the sleep study! I keep asking to do them at home but they refuse. So I continue with home videos of the craziness.

Sleep Walking

2010-02-19T09:49:00.000-08:00

I had to talk with someone I didn't know the other day who was asking a million questions about Haven and everything we've gone through since we started noticing things at age 1. It's amazing how much you forget over the years when you become obsessed with the here and now.

Like at age 1 I told her doctors over and over that she never cries, has never shed a tear, and doesn't feel pain. I was blown off and a first time mom didn't push it past that. Everything else was normal. So what if she never cried - I was lucky!

Then I had to remember when she first started sleep walking. Most people don't really understand sleep walking or what it really is. Did you know sleep walking doesn't actually mean "walking in your sleep"? It's actually any type of sitting up moving around and talking in your sleep. So when Haven is sitting up and screaming and punching the air or bed - that's sleep walking - as we were informed by our doctors.

Over the years Kris and I have had to learn when Haven is sleep walking and when she is awake. To a normal person that has not lived with this you probably wouldn't be able to tell the difference. Haven has dark blue eyes and perfect speech and vocabulary. When sleep walking her eyes are a clear blue - like you can see through them - they are very glassy and her speech is slurred like she is drunk. Her walking is as coordinated as when awake and her bodily functions are exact to when she is awake. My dad has had conversations with her thinking she was awake until I walk in to the room and give him a look and inform him that she is sound asleep - doesn't matter if she is answering your questions or not. She's asleep.

I had to recall some of the scariest sleep walking episodes she has had.

Our first biggie - mind you she was ONLY 3 at the time it started but Haven has always been a little advanced on vocabulary and sentence structure.

Age 3 - she was sleeping in my bed and I heard a scream around 11pm. I ran upstairs to find her sitting up in the bed, eyes open, and arms flailing. My first experience - I ask her what is wrong and was actually upset with her. She starts hitting me and then grabs me and whispers "there's a girl in my bed". I looked at her and she was looking at me. I asked her what was wrong again and this time she got upset "mom, there is a girl in my bed looking at me". I patted the bed next to her and told her no one was in the bed. She looked down and started screaming and clawing her way off the bed. She yelled at me again "there is a girl in the bed smiling at me; she has blood on her face".

That was it for me. I remember every detail because I was scared. I grabbed her - ran downstairs - told my husband and for the next 4 months Haven and I slept on the couch.

The second major episode:

Driving across country in August 2007 in Oklahoma at a cabin. We put Haven down for a nap and about 30 minutes later she was wandering around digging through the fridge. So I told her to sit on the couch and she did and I made her lunch. By this time we'd been doing this for over a year. I walked up to her and all I needed was to see her eyes. She was sleep walking. I put her food to her nose and said "when you wake up you can eat". About 15 minutes went by and she was still in the weird state of sleep walking but functioning. Kris and Kendall came back and now it had been about 30 minutes. We watched her closely for about another 30 minutes when we felt we needed to get her out of whatever it was. We tried loud noises, screaming, making her walk, splashing water on her face.....we even threw her in to an ICE COLD shower. I couldn't even keep my arms in there after a minute but she just stood there like nothing. We took her out - bundled her up - and laid her down. About another 20 minutes she woke up like nothing ever happened. Wanted lunch and went on to the playground.

We made it to MD from OK without any further issues but once we moved in she was so bad I removed all furniture from her room and my her dad and I took shifts sleeping on the floor with her for the first year with a leash tied from our wrist to hers so she couldn't go anywhere without us knowing.

OCTOBER 10, 2007 - Haven has a 45 minute seizure and ends up at Hopkins

The next horrible incident:

At pre-school for the last time -- I got off work early and went to pick up Haven. It was about 4pm. The kids are out playing on the playground and I walk out. Haven didn't come running to me. That was weird. I called for her. She didn't even look my way. Weirder. I walk over to her - she was on the swings. I pulled her face up to see her eyes - she was sleep walking!!! ON THE PLAYGROUND AT SCHOOL! I immediately grabbed her and called all the teachers around to see her. I asked them how long she has been like this. They said they got up from nap at 3pm and she was a bit difficult to wake up but she ate her snack and was playing - so about an hour. For one hour she had been running around a playground sound asleep and SHE WAS EATING! I reminded them of her medical issues - we didn't have a diagnosis yet - and that was the last day she went to school.

After this we found out she has cancer and diagnosed with ROHHAD Syndrome. We stayed close to Haven at night out of fear of what could happen. We moved her bed in to our room and she stayed there for about a year. Through all of her chemo her sleep walking episodes began to get less active and more just talking.

After isolation this year we had two bad sleep walking episodes with bugs!

both incidences we'd wake up with her screaming that bugs were on her. Completely freaking out that bugs were on her walls and body and bed. I would act as though I was wiping the bugs off and cleaning her walls around 2 - 3 am. Once she knew I'd gotten rid of all the bugs she would happily go back in to bed.

Over the past few months they have begun to come back. In October and November we had a lot of issues with robots, of all things. For two weeks we had the same scenario going on:

Around 2am we'd hear screaming from her room - which is pretty normal. Then I'd hear a thump. One time I found her hiding behind her bedroom door completely naked. She was asleep and just standing there whispering that we had to hide from the robots. Then there were a couple times we'd wake up with her running down the hall screaming at robots - again completely naked. A few more times of her completely naked at her bed yelling about robots. I do not understand why robots made her get undressed but we'd dress her and put her back in bed each time.

Then a few weeks ago we had a visit from a past little girl!

I heard her screaming around 1:30am and went in to her room expecting just the normal talking/screaming fit. As I got in there I could see that she had a terrified look on her face. I asked her why she was screaming and to remember that she was asleep. She looked up and whispered. There's a girl at my door. Instant flashback for me. I sat down and told her there wasn't a girl there and she needed to go back to sleep. She got really upset and started screaming at the girl to leave her a lone. I tried to calm her down and she started yelling that the girl was laughing at her and she had a big dog. She was standing at the door. So I closed the door and sat there for a minute. Haven laid back down and that was the end of that.

This stuff never shows up or happens during a sleep study - I wish it would. No one call tell me what is going on except that maybe it is a short circuit while she is sleeping. This is our 3rd year of crazy sleep walking but at least now we are used to it.

My ridiculous foot

2010-02-19T09:09:00.000-08:00

So....here is my foot 90 days after surgery! I went the doctor at the beginning of this week for my check up and it's really been hurting after such a busy last month.

I do my x-rays....and wham....doctor comes in and shows me that my foot is STILL broken in two places. It's a clear break all the way through the bones.

So those two areas are where it is broken and the shape of the break is a V - where the doctor cut the bone. For some reason it is not healing. So next Tuesday I will get a bone stimulator to use on my foot each night for one month. This is to help the bones mend back together. She put me on reduced range of motion - especially after one night of exercising my toe and I felt it slip. I could barely move my body I was in shock and pain. I couldn't even cry it hurt so bad. I just laid there in shock.

Not only is everything still broken but my foot is still swollen where all the soft tissue was cut and the hole where the pin stuck out still hurts. She said this will probably take 8 - 9 months to heal. Funny - no one told me this before having surgery!

Home from Honduras and ready for work

2010-02-15T10:42:00.000-08:00

The largest KFC I've ever seen in the middle of town in Honduras.

The group took me out for some major Honduras food --- ha ha --- hamburger and fries and a Cherry Bomb Martini! We had a great time!

Hanging with the girls - Teresa, Kate, and Donna at the Copantl Steak House!!
Bought some pottery on the way back home. Absolutely beautiful - and the little dude on the left. I set up all my shelves with stuff from countries I've been. Love it.

Missing the blizzard!

2010-02-10T05:22:00.000-08:00

A few shots flying over to Honduras. The shoreline is sooo cool from the sky!

Thought this was interesting because it looks like half of it is under water!

Little restaurant in the sky we ate at last night. Very good food.

View from the restaurant - the mountains are beautiful!

Well while I'm in Honduras this week it seems that my house has been hit with another blizzard. Work shut down again for a snow day. I can only imagine the pain it's going to be to get home on Friday at midnight! Luckily we have Monday off so I can three days to recover.

View from my room last night over the mountains!

The Slowskys

2010-02-07T07:19:00.001-08:00

I love the Slowskys -- this is my favorite commercial!

More photos

2010-02-06T12:54:00.000-08:00

Approximately 30 seconds after this photo everything went bad. Haven flipped on to her back and knocked her head on the deck and the dog jumped over the snow and we lost her. Kris grabbed Haven and I jumped in and dog Deez out. We got Haven checked over and set her on the couch and then took Deez in to the bathroom and blew her dry for about 20 minutes!

But as you can see the snow is ridiculous!

I shoveled for 2 hours and got 1/3 of the deck done for the dog and a path to my mom and dad.

Starting the path....this is the heaviest snow!

Almost done...........

Back yard

Trees at my dad's

Blizzard 2010 - thundersnow

2010-02-06T07:03:00.000-08:00

Opened the back door to let the puppy out at 7am! It's a super heavy and wet snow that is very very cold. Nothing like our December blizzard!

Back deck - it's up over my knees by 7am and we have another 8 hours of snow to come! Looks like we're hitting 30+ inches for this one. Who knows when we'll be able to get out. Good thing I stood in line for 2 hours at the grocery store the other night!

back deck

Opened the front door - the wind has been blowing so hard the snow has covered all the windows and doors.

The front yard - I don't even know where the street is and probably won't see if for a few days! I have to travel to Honduras on Monday night - we'll have to see how that works out!

Countdown begins!

2010-02-05T05:09:00.000-08:00

Based on upper level analysis and surface dewpoints, our forecast team believes snow will begin between 10 and 11 AM across central Maryland, or sooner and accumulating quickly. Road conditions will deteriorate rapidly and by 1:00 pm will resemble the January 30 event. As for total snowfall, student forecasters at the Baltimore County Crossroads Center calculated 25.6 to 33.8 inches at BWI Thurgood Marshall Airport as a representative location of storm impact.

Historic Winter Storm

2010-02-04T19:01:00.000-08:00

Almost makes a blizzard sound exciting....but then I just spent 2 1/2 hours at the store with everyone else in Maryland! See below............doesn't it sound like fun!!! This is the second one in two months!

ESTIMATED SNOW ARRIVAL TIMES for Friday, Feb 5
Virginia: 7 - 9 AM | Maryland/West Virginia: 11 AM -12 PM
Southern PA: 1 - 2 PM | DelMarVa: 2 - 3 PM | Central PA: 4 PM
Northern PA: 10 PM Friday - 12 AM Saturday

This will be an historic and extremely heavy, wet snowfall of 20 to 26 inches for much of the Northeast I-95 corridor from Virginia to central New Jersey. We urge citizens to heed public safety advisories from local and state authorities as well as the National Weather Service while preparing for this crippling event.

sigh

2010-01-19T11:15:00.001-08:00

After spending a few hours at the doctor today I have 3 prescriptions to pick up, another specialist to see, and another mammogram for the lump found in my breast this morning.

So tomorrow I will spend the afternoon staring at technicians! She said the lump is about 1 cm in size at the 8 o'clock position.

I am remaining unphased by the lump right now as I am only looking forward to Disney next week and then Honduras two weeks after that!

Reproductive Endocrinologist

2010-01-18T17:42:00.000-08:00

I never knew this doctor even existed!

I have been trying to get a doctor to listen to me for a long time about my endometriosis. When I was 28 they told me to get pregnant or start immediate menopause!

Starting menopause meant putting me on medication that within 2 weeks would begin my body shutting down and menopause starting then at 6 months they would jump start it back up hoping to stop the endometriosis. No guarantee of ever having kids after or stopping endometriosis but would guarantee hair and bone loss earlier. Didn't sound like a great option! So after trying and trying - even had to set a timer that when my temperature was right it was go time. This got old so I set up to have surgery first to hopefully remove some of the endometriosis. Two days before surgery my doctor called to let me know I was pregnant!!! Yea!

Well it was a horrible pregnancy. By 6 weeks I was bleeding non-stop and after the 5th trip to the ER in two months for bleeding and being told I was going to miscarry they found the issue. The egg had implanted in part of the endometriosis causing a two inch tear in the uterus. Well that sucked and hurt. At 6 months I went in to labor. I spent 8 months on bed rest but had a beautiful baby.

Now the thought of having another one has always been terrifying because my healthy daughter became unhealthy at 2 1/2 years old with Neuroblastoma Cancer and ROHHAD Syndrome.

In 2008 I started having issues again. By May 2009 I had seen 5 different doctors and they had some cooky things again. Two OBGYNs said to have a baby or start menopause....the other one told me to have surgery....then the next one I went to was because I was terrified I may have breast cancer. I had a biopsy done and the results came back as "rare abnormal glandular cells" of the breast. My doctor said because I was too young there wasn't anything to worry about that it was probably Witch's Milk! Awesome....what is that? Well it actually is something that happens in infants.

I sent a text to my friend while waiting for the doctor and when she came back in I explained to her that I don't believe in "too young" and that my daughter was diagnosed with cancer at age 3 - so what is too young? And that her diagnosis is for infants and I obviously am not that young. Reluctantly she ordered a Mammogram. Once I got there they refused to do it without a MRI and ultrasound at the same time. So I had to go back to this wonderful doctor and pretty much force her to rewrite the order.

My scans all came back great. Now it's 2010 and again I'm having major issues with endometriosis and breast. My current doctor thinks maybe they are connected. My cramps are deadly and even dropped me to my knees while at work one day. When I finally was able to stand I left. Pain medication didn't help and I was in pain for 2 days. Now I've had a period every 15 days......you can imagine what it's like being around me! My breast is again doing the same thing.

I emailed my daughter's pediatrician - I trust her with everything. She tells her husband - who is an internist - who tells his nurse practitioner (who is my doctor now) and she calls me to say she is finding me a doctor. AWESOME! She gets me with a reproductive endocrinologist at Hopkins. I go tomorrow - I am nervous but happy to hopefully have a doctor that knows what I'm talking about.

I've never heard about a Repro Endo but after researching them I hope they have better options for me! Endometriosis is horrible.

Foot doctor

2010-01-13T08:30:00.000-08:00

So yesterday was my 4 week since the last visit - visit! I really thought I was doing pretty well. I stopped taking pain meds after the big snow - it was tough shoveling with a broken foot!

My foot is still swollen and bruised at the incision site and especially where the pin was is very tender. I have been trying to exercise it as much as I can but it really hurts to bend my toe. Even when I walk I push down on it.

With only a couple weeks until Disney I have to be ready to walk for hours every day. The other night I bent it so far and cried through the pain that it even popped. Which felt good but I don't know if it was good.

After X-rays yesterday the doctor came in to ask if I was still in pain. Of course I am but it's tolerable. She put the x-rays up and it seems that my foot is still broke and she showed me the two fractures that aren't healing as they should be. She said it may take about 8 months to be fully back to normal.

I try to keep my shoes on but I don't like wearing shoes in the house for Haven. Doctor said I must always have them on if I want it to heal - I definitely don't want it pinned again.

Other than that I sleep a lot!!!! I barely have time to update Haven's page because I'm most likely sleeping. I've been on medication since October for migraines, foot surgery, eye infections, endometriosis, and insanity.......I'm barely feeling human again!

PIN HAS BEEN REMOVED

2009-12-17T06:25:00.000-08:00

Reflecting back on a horrible month! this is 3 days after surgery

This was 2 weeks after surgery. We removed the stitches and had to adjust the pin since I kicked it further in to my foot.

This is one month after surgery. We removed the pin about 1 minute after this photo. This is at the 4 week mark. Stitches area has healed up nicely. Foot looks like a zombie foot.

Finally - The pin is out and 24 hours later I was allowed to shower! It was the best shower I've taken in a very long time!

Walking is still a challenge and I am not supposed to do much on it yet. She wants me in sneakers full time by January 15th.

Thank you to my mom for taking me to my appointments and holding my hand while the doc pulled the pin out.

S.W.A.N - Syndromes Without A Name

2009-12-08T09:56:00.000-08:00

http://www.undiagnosed-usa.org/

I was doing a survey for NIH and at the end it had two links where you can go for help. One of them was for genetics testing - which so far this is not genetics. The other was for SWAN - Syndromes Without A Name. I went to their site and it's very cool. I immediately joined up and found them on Facebook so I could stay up to date.

Even though we have a diagnosis or whatever it is - I think this is a great place for us mom's to join and check out. After all - a syndrome is just a big group of symptoms.

Our doctors told us before - they don't care what everyone wants to call the syndrome - they can call it Haven's Syndrome if they want. The most important thing is to stop her from progressing and give her a long life.

Jacked up

2009-12-01T15:44:00.001-08:00

Today was horrible. Well it actually started a couple days ago and then last night I was up almost all night with severe pains in my big toe. The nail has been burning cold and feels like a knife is stuck in it. Burning cold is a feeling like I have IcyHot on me. Then it's so numb on the top that I can't feel when I touch my toe. I was extremely worried that there was an infection.

So I got in to the doctor today and we were unwrapping to get the stitches out. I described my pain to her and when we got to the pin gauze it was covered in blood. Which it shouldn't be at this point. She looked at me with that doctor look and said I had pushed the pin in to my foot. I probably did it with one of my many falls - who knows. But this is why it was hurting my nail.

Before I could even think she grabbed the pin and started pulling and wriggling it. All I could do was hold my breath and cover my eyes. It hurt and hurt and hurt. Then she snipped the ends of the stitches and pulled it through from top to bottom....that burned! I've never had stitches before and everyone always said they didn't hurt - but these did!

So I took some massive pain pills and passed out for a long time. My toe is still in pain but she said it should calm down by morning.

Official pin removal date: December 15th!!!

I'm excited to get the pin out and at the same time I'm terrfied. I'm going to be awake and have to see it. Gives me the willies just thinking about it.

Thanksgiving

2009-11-25T20:29:00.000-08:00

Hope everyone has a great Thanksgiving.

Everyone on Facebook has been doing their daily things they are thankful for....so I made a list of some...but not all....

1. my sudden decision to move to CA at 21 with no family, meet some boy and get married - without this I wouldn't have my Haven.

2. Johns Hopkins - without their knowledge and skills I probably would've lost my baby.

3. Kris - taking care of Haven 24/7 for the past 2 years and if he wouldn't have been able to take over 100 days off this year and get Haven to the hospital I may not have my baby.

4. ROHHAD moms - without the strength of these mom's and the shared stories of their children I probably would've succumb to a mental breakdown.

5. Friends, Family, and Strangers who have taken the time to learn about my daughter, her illnesses and have stopped for a few minutes and sent me encouraging words or letters to my daughter.

6. The company I work for - without their understanding I would've missed the most precious moments with my daughter that I could never get back.

7. Child foundations - without many of these we may not have been able to get through the past 2 years - Casey Cares, Matt's Helpers Foundation, Make-A-Wish, Believe In Tomorrow, Make A Child Smile

8. Family for giving everything they could to Haven - paying for over a year of Lauren to be with Haven twice a week, working with home nurse to get a grant for Haven, custom made clothing, coming out to spend time with Haven and making her laugh, taking Haven when we need to get errands done....just everything

9. I'm very thankful I do not have to drive anywhere for the holidays - instead I only have to walk about 20 feet and get some yummy food.

10. Thankful my mom has made 2 turkeys and 1 ham this year.....now my dad won't whine that everyone takes all the leftovers and he doesn't get any.

There are a million more......

Endometriosis

2009-11-25T09:28:00.000-08:00

Does anyone else have this? Or dealt with this???

I've talked to a good friend about her Endometriosis and asked for her advise and how she knew. She ended up having a hysterectomy which helped her. It's good to find someone to talk to about this. My aunt had it when she was a teenager as well and also ultimately had a hysterectomy.

Mine started in my teen years and birth control pills are said to help with it. Well I was on those for 13 years and still had lots of issues and pains. As they got worse I decided to stop taking the pill since it wasn't helping anyway and my body probably needed a break from it. Two years after being off the pill the pain was so bad and the endometriosis was so bad the doctors gave me 6 months to either have a baby or start early menopause. I was 28.

Endometriosis is a medical condition in women in which endometrial like cells appear and flourish in areas outside the uterine cavity. So everytime you have a period it gets worse. So to stop it you must stop having a period.

I researched the early menopause and talked with the doctors a lot. It would be a medication I would take that would put me in to menopause within 2 weeks of taking it. This would last for 6 months when they would suddenly kick my body back in gear and try to get out of menopause.

I really didn't like the menopause idea because it puts you in a place that isn't natural so early. Causing increase in bone disease (Osteoporosis) and loss of hair. No guarantee that you can get out of menopause and no guarantee you can get pregnant afterwards or even carry to full term.

Then they decided well let's do surgery. So a date was set for surgery leaving me only about 5 1/2 months to get pregant.

At two days before surgery my doctor called me all excited to tell me that I was pregnant and they were canceling surgery. I was only 2 weeks at this point. He told me that I would have to breast feed as long as I could after the baby was born to keep the endometriosis away. Breast feeding halts the period in most women.

At 6 weeks the issues began - the egg had infused so close to the endometriosis that it had torn my uterus 2 inches and I couldn't walk. I was on bed rest. For the first 4 months I spent a lot of it at hospitals. I was in the ER 5 different times and was told every time to go home that I was going to miscarry the baby and to call my doctor. At 6 months I went in to labor and they stopped it. From that point on I kept it easy.

I did ultimately carry my baby to full term and had her on the exact date the doctor said I would. However, my daughter now has cancer and a rare syndrome, ROHHAD.

The doctors told me I had about 2 - 3 years before the Endometriosis would be back to full strength. It has now been 6 years.

Over the past year I have noticed it getting worse and worse. Last month I thought I was dying. I couldn't stand for over an hour. I wanted to throw up and was dizzy. It took me at least 30 minutes before I could tell my boss I had to leave work because I couldn't stand. I got home and took 2 Vicodins immediately and slept for 3 hours. Heating pads work but they don't really get rid of the pain. I was still hurting after the 3 hours and took more Vicodin.

The next day I was still in pain but went to work. When I got to work I took another Vicodin in hopes of making it through the day. It has never been this bad. I have been to doctors here.

The OBGYN here has again suggested have a baby or menopause and I can't believe that can be the answer every time. I don't know if this is what caused my daughter's issues or not.

As of now my doctor has put me on anti-inflammatory medication 3 x a day for a month and then 3 x a day for a week every month until I figure out what I want to do or the pain is too much to deal with. I am trying to get in to Hopkins with an Reproductive Endocrinologist. I want to find a specialist with Endometriosis and so far I have found one at Hopkins.

If anyone else has dealt with this I'd love to hear what you did or have done. It's extremely painful.

Immobile

2009-11-23T13:36:00.000-08:00

I'm done with the confinement of the couch and elevated foot! I have fallen at least one time every day since surgery. Yesterday was the worst. Trying to go to the bathroom is HORRIBLE! I took one hop in to the bathroom and BAM was on the floor. I was caught by my knee on my good leg --- today it has a huge black and blue bruise! Not to mention trying to pull your pants up while balancing on one leg and knowing a tub is on one side of you waiting for you to fall in!

This morning I woke up in a lot of pain but it wasn't the normal areas. Usually the pin is the most painful area and the area between the big toe and 2nd toe - that's where she cut away the "soft tissue". Today it's the side of the foot that had nothing done to it. I pulled the gauze up a little bit so Kris could take a peek and his face was enough. He said it's practically black from bruising.

I haven't had a pain pill since last Thursday but I took one today and am waiting for it to kick in. Kris requires that I do not open the computer for the first few hours of the pill. I wrote an email to Haven's doctors while loaded on meds and the doctor told Kris he didn't know how to respond. So I will sleep.......

Nikkideez comes this week - we will go to my mom and dad's on Turkey day. They are cleared to see Haven that day.

I got some get well cards from my aunt Candy and Grandma today --- that was very nice! I'm so used to Haven getting mail I gave them to her and she said they were for me.

I'm also selling some stuff on Ebay and am excited to do so. You can pick a charity that you want to donate a percent of your earnings to. I checked and one of our favorites was on there. Casey Cares Foundation. I was looking for Matt's Helpers Foundation but they were not on there. So right now 10% of my ebay goes to Casey Cares!

Casey Cares sends Haven tickets to parks and concerts, we've received restaurant gift cards, Halloween t-shirts, and an awesome Casey Cares t-shirt.

Matt's Helpers has been there from the beginning too. They have sent us money, gift cards, and gifts for Haven. Just recently they sent us $200 in gas cards. THESE ARE AWESOME! Kris is the only one that uses these. The only place he goes is Hopkins so one tank of gas lasts him 2 - 3 weeks. So these cards will last a few months.

THANK YOU EVERYONE

RARE DISEASE DAY 2010

2009-11-21T11:28:00.000-08:00

Post from NORD web site:

Official U.S. Rare Disease Day Website to Launch Soon

As the sponsor of Rare Disease Day in the U.S., NORD has created a website where activities and events for Rare Disease Day 2010 will be posted. Watch for the launch of this new site soon.

ROHHAD - Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation Neural Tumor

2009-11-20T19:24:00.000-08:00

When my daughter was diagnosed with ROHHAD I was adamantly opposed to the diagnosis and I got pretty pissed off when I was told. Because only 30 children in the WORLD had this and how could my daughter have it. I called many hospitals asking for information (UCLA, Ceder Sinai, Mayo Clinic, St. Jude.....) and none of them had heard of this disease. I checked NORD and GARD and nothing. Finally I found another child, Josh Wooten, and contacted his mother for more info. Then I found a comment written on Vanessa's site from Julie, Mason's mom. She emailed me and we began to talk.

I really felt lost and alone with this new diagnosis. I couldn't find anything on the internet about ROHHAD and the top hospitals I called couldn't help me. There was only one group of doctors that had done any research. I read the research paper over and over and created a spreadsheet listing the exact symptoms and ages the doctors had noted. I wanted to compare for myself all of the symptoms that Haven had. I looked through Haven's books where I made my own notes. Once I filled this out I sat in disbelief that my daughter could have such a terrifying disease and no where to go.

Below is the spreadsheet.

CLICK CHART TO SEE THE FULL SPREADSHEET

CLICK CHART TO SEE THE FULL SPREADSHEET

I probably would've gone insane if I hadn't met these two moms. It was only a couple months later that another mom found me. This was Maureen, Sophia's mom.

At this point my daughter's Pediatrician also found many articles written about ROHHAD and another reasearch paper from some doctors in France. They noted 6 children with ROHHAD also had Ganglioneuroblastoma Cancer and that this tumor comes with ROHHAD. After I saw this I checked the spreadsheet and 1/3 of the patients in this compilation had the same tumor. But a rebuttal stated that the tumor should not be the ultimate decision in diagnosing ROHHAD as a child could be misdiagnosed and have fatal consequences. So instead of ROHHADNET it has remained ROHHAD.

Now I have been told that there is some disbelief that my daughter even has ROHHAD because she is not on a trach and has not stopped breathing. I call this BS and a big load of it. As noted to the doctors in France to not only look for a tumor to diagnose I don't believe you should only look for Hypoventilation to diagnose. Especially when it would seem that Hypoventilation doesn't usually occur until between ages 6-8 years old. That would mean I would've had to ignore my daughters symptoms for another year to two years. At that point it could and probably would have been too late and my daughter may not be with me.

IF we were to only be looking at children with Hypoventilation and on a trach why call the disease ROHHAD? Why not call it Hypoventilation Syndrome?

I do not believe you should say a child doesn't have a syndrome because they do not have one specific symptom when they exhibit a majority of the symptoms in the proper age range. So with the tumor - no a child shouldn't be discredited because they don't have a tumor or that would mean only 6 of these children REALLY have ROHHAD. And you shouldn't say only children on a trach have ROHHAD because that would be throwing out all of the other above symptoms. AND my daughter hasn't even reached the proposed age at when Hypoventilation should happen.....nor am I willing to wait for it to happen.

I PRAY MY DAUGHTER NEVER EXPERIENCES HYPOVENTILATION AND THAT THIS IS AS FAR AS HER ROHHAD DAMAGE GOES!

Now rather than discredit me, my child, or our doctors I say you give me a little credit for bringing this unknown disease to the public eye as best that I can!

H1N1

2009-11-20T09:21:00.001-08:00

I had to tell Haven today that she couldn't see Grandma B-Honey for a week. My parents are great at trying to keep up with what they need to do to be able to see Haven and yesterday both of them got the H1N1 vaccine.

My dad got his shot and told the doctors that my mom would be coming in as well to get hers. He told them she had to have the shot and not the nasal spray because Haven has Cancer and is immune suppressed. They told him no worries and to send her in.

She went in and they instead told her that since she was healthy and young she had to have the nasal spray. Well she didn't know and they gave it to her.

I emailed Haven's doctor as my first concern was if Haven could see her for Thanksgiving and how long they had to wait. Doctor told Kris this morning that neither one of them could be around Haven for at least a week.

Even though my dad had the shot he is still around my mom who got the spray. So he has to stay away as well. I feel bad because they come over every single night to check on Haven and see how she is doing. I called Haven at the hospital and told her why they couldn't come over. She wasn't happy but said ok.

So if you are around anyone with low immune system or is sick do not get the nasal spray - this is the live virus and you are bringing the virus in to the area where it wouldn't have been originally. ;)

Visit to doctor

2009-11-19T14:53:00.000-08:00

well I had my visit to the doctor. And YES my foot is that swollen! We've had ice on it round the clock and still it's swollen.

We took two xrays. I think Kris enjoyed looking at the before and after xrays - you could see where she cut the bone and moved it and then pinned it.

The pin sticking out the side goes from where you see it to the bottom of the upper knuckle of the big toe. Hence the reason I couldn't bend it. She put a lot more gauze around it this time because I was feeling it too much before.

There are about 15 stitches on the upper part of the foot that she will remove on December 1st.

The pin will be removed in about 4 weeks.

I have been ordered to not put any pressure on it at all until she looks at it again and lets me know. So guess what....I came home and took a nap then got up and fell on my butt! But I saved my foot!!!!

YES IT HURTS!

Foot surgery

2009-11-19T08:23:00.000-08:00

Well this is all I have for now......

Surgery was Monday at 8:30am. I met with the anesthesiologist right before and she told me a few things I wasn't expecting and I wanted to cancel surgery right there!

First the anesthesia was going to be so light she said I might wake up during the surgery! WHAT??? I don't want to know anything about it.

Then the doctor came in to go over what she was going to do again. She cut two bones in my right foot and grinded down another bone. Then pinned them together. One of my pins is sticking out of my foot by 3/4 of an inch. It sticks out the side.

Well I did. The first time I woke up I could hear the doctor grinding on one of the bones in my foot. I started yelling that I could hear her and I didn't want to. So they knocked me back out then I woke up again and instantly was crying. I could feel her pulling the skin on my foot apart. I didn't want to feel that. I heard the nurse say "don't cry" and then I was out again. The third time I woke up I was over it. Instantly started asking if we were done yet because I was tired of laying there. Well they were, they were just wrapping me up.

There was essentially no recovery because I was in and out so much during the surgery. They went over a few things with me which I couldn't remember - at least Kris had talked to the doctor.

Monday I slept the rest of the day and cried most of it. The pain was so intense and the Darvocet was doing nothing. I practiced breathing and mind over pain instead. I think I finally passed out around 3am from pain.

Tuesday the pain was much better - still hurting a lot. I have been using Haven's wheelchair instead of the crutches. It's just too hard in the house.

Wednesday was all about pain where the main part of surgery was. The bone on the outside, the bone between my big toe and middle toe, and the pin sticking out the side of my foot. Didn't matter what position I was in it hurt. I didn't get to sleep lastnight until around 4:30am only to have Haven yelling to wake up at 6am.

Today is the same as yesterday. I can't get a good position. I woke up with a major allergy issue of my eye. I had this for a couple of weeks before surgery but it started to go away. I think surgery has taken my entire body to heal which has left my eye open for infection. I called my doctor this morning and she called in an antibiotic for me. Now I'm guzzling orange juice and vitamins. I have to be healed completely 100% by January 25th!

This afternoon I go back to the podiatrist and she is going to unwrap the foot to look at it, clean it off, and rewrap it. Look for some cool pics later!!!! I can't wait to see my foot. It makes you crazy not being able to see what's going on. Kris looked at my toes yesterday and they were extremely swollen and turning black/blue. I want to know what is burning at my heel.

Love to all.......

Prepping for Surgery

2009-11-15T09:26:00.000-08:00

Well...my day is being spent prepping for surgery. Everyone seems a bit concerned about laundry, food, and house cleaning after my surgery. So I'm overdoing the laundry to make sure everyone has clothes, going grocery shopping, and cleaning.

Cleaning is not going so well since everything is cute to Haven and required that we must keep. So I'm probably going to leave the pink room as it is. Everytime I grab something she wants to know why that has to be thrown away. UUUGGG....

Tomorrow at 8:30 am I will have surgery. I'm quite a bit nervous. Not about the surgery but not being able to walk for a while. That scares me more than the surgery. I did get my new pain meds. The doctor originally prescribed Percocet - which I did realize was Oxycodone. I can't take that because it makes me feel like bugs are on me and very itchy. So it was changed to Darvocet.

It's a beautiful day today and Haven has homework that requires her to be outside. So we're going to do that while I'm still able to walk.

I asked Haven if she was going to help take care of me and she said sure as long as she wasn't busy with her crafts and school work. :) Yea, she loves me.

ROHHAD NEEDS HELP

2009-11-10T20:12:00.001-08:00

I can't handle the pain and suffering from families and having no where to turn because no one knows about us. We don't have an organization or a foundation to turn to. I feel I must try to find a way to begin a non-profit organization or a foundation to help our families. I know MANY ROHHAD families now and have talked to quite a few mom's. Desperate to save their child and not even understand what they are trying to save them from.

NO CURE - NO TREATMENT - NO HELP

Many of us spend the first year being told by doctors that what ever it is it is the fault of the parents. We lose this time trying to diagnose our child and we lose key areas needed for our child to function.

Shelby lived in Arizona....she is 7 years old. She traveled to California in hopes of help and was diagnosed with ROHHAD but the doctors didn't know anything. Now they have moved to Illinois in hope of something with Dr. Weese-Mayer and her team. Shelby's insurance is almost out and they have no where left to turn.

Nikki spent almost an entire year in the hospital away from her family.

Sophia has had pneumonia 5 times this year and more and more symptoms are popping up and the family is left defensless against stopping her from slowly getting worse.

Mason is testing medication in hopes of helping him be able to breathe on his own again

Haven has spent two years trying different chemos in hopes of stopping the disease and offering hope for other families

Josh is living with a vent and pacer to help him breathe and lead a normal life

Denika is has been forced to leave her home to stay in a hospital away from her family in hopes of saving her

Noreen is constantly fighting infections and her condition worsens as time goes on

There are more families than even listed above. We only have 40 - 50 of us in the ENTIRE world. How do you get anyone to listen to a such a small group?

Are we supposed to sit here and let our children slip away because no one knows about our disease. Everytime I go to bed at night I stress that Haven may not wake up in the morning. I don't want her sleep walking to stop - if I can hear her screaming or talking or walking around I at least know she's breathing.

I'm asking for help from anyone who may know how to start an organization that can help our children. Should I have a web site created? Should I have a forum? Do I need an attorney that I can't afford because I just spent $2,300 on medical expenses from the past few months?

There are two more girls about to go on a trach/vent to breathe....age 5 and 7.........where do we go?

FACEBOOK

2009-11-06T20:47:00.001-08:00

If you are not a member and you are on facebook and you read about my daughter and all the other children - please join our group on FACEBOOK. It is called ROHHAD Syndrome. Link is: HERE

PS: if you are requesting to be my friend it might take a while. I decided to "play some games" and signed up for a bunch of things and suddenly had like 300 friend requests. Well Facebook informed me that they don't believe these people are really my friend and have limited me to how many friend requests I can accept! Sorry!!!!!

Revimmune or Rebooting the Immune System

2009-11-04T16:48:00.000-08:00

Well this is what we did this summer with Haven. It's a fairly new process and is being used in aplastic anemia and MS patients. With the evidence that ROHHAD is an autoimmune disease Hopkins felt this would be one of the best options for Haven. Since then I have found articles written on Revimmune. I didn't know that word existed until I typed in to google "high dose cyclophosphomide". It is very interesting to read about. I have a few areas that were most impressive to me.

Revimmune therapy consists of an ultra-high intensity, short-course, intravenous formulation of cyclophosphamide. It is believed that Revimmune "reboots" a patient's immune system, thereby typically eliminating the autoimmunity. The "rebooting" process is achieved because Revimmune eliminates the cells causing the autoimmunity and spares the stem cells in the bone marrow. These surviving stem cells are then able to repopulate a restored, uncompromised immune system.

The HiCy 1-time regimen used in the current study has been shown to be safe and effective in autoimmune diseases, including lupus erythematosus, autoimmune aplastic anemia, and myasthenia gravis.

The regimen, which was developed about 15 years ago by Robert Brodsky, MD, and Richard Jones, MD, hematologists at Johns Hopkins, works by eliminating the "misbehaving" immune system while preserving hematopoietic stem cells, allowing the immune system to "recreate itself from scratch."

And then during my random searches I found this in a forum - from 2006:

I am, like you, very interested in high dose cytoxan. However, rather than pursuing the route of receiving one infusion per month over a five or six month period, I am interested in the "Revimmune", or "HiCY" protocol, now in clinical trial at Johns Hopkins. This protocol is basically the same dose of cytoxan that one would receive as conditioning for a bone marrow transplant. Over a four day period, you receive enough cyotxan to completely ablate, or wipe out, your peripheral immune system. Then, when your white blood cell counts bottom out to undetectable levels, you are given injections of Neupogen which cause your bone marrow to go into overdrive producing new white blood cells. They call it "re-booting" the immune system. The protocol has had spectacular results in a number of autoimmune diseases, like aplastic anemia, Lupus, multiple sclerosis, sarcoidosis and CIDP. The protocol has produced long-term remissions. You can Google Revimmune to research more. This treatment seeks to eradicate the autoimmunity, rather than "manage" or suppress it. For people with severe disease particularly those who are younger, and who are finding modest results with immunosuppresion or IVIG, it makes complete sense to me. Obviously, it has risks and it is not a "natural" treatment. You lose your hair, etc. But I, like you, am young. I'm 46, and am very disabled. I once was extremely fit, and was an expert snow skier.

The issue right now is that Hopkins has narrowed their focus to completing the next phase of a clinical trial for Revimmune to treat multiple sclerosis. Thus, I believe it will be difficult to obtain this treatment "off-trial" for a disease like CIDP for at least another year.

There are many articles out there about Revimmune.....I am actually excited that Hopkins approved Haven for this and we actually saw results.

And yes there is even a web site called: gothicy.com

Chiropractor

2009-11-04T12:52:00.000-08:00

So with my scan below I decided to try the chiropractor and MAYBE it would help with my migraines. I met with her and told her everything I didn't like and what I didn't want done. Which she was very understanding and followed my orders pretty well.

The first visit we did xrays and I found out that I'm only phase 1 - if you've been there for 4 phases. My issues are with the last vertebrate of the lower spine L5 I think - well it's squished where the sciatic nerve is. There is a very small curve of scoliosis in the middle but she said nothing of much concern. Then there is a bad area in my neck between the C3-C4. That the C4 is being pushed out by the C3 and it is squishing the nerve there which could be a cause of my headaches. At this visit she only did minor stuff to my neck to prepare me. They guess that I need at least 50 sessions to be at complete.

Then I went for the 2nd visit and she really cracked up my back that time. She's pretty tiny so at one point she was laying on me while I was twisted. It sounds really bad but it felt good to get that pop. Only thing is the cracking of my neck gave me a headache this time - OR it could've been the electricity they put through my body. I am not a fan of this. She also did some stretching and stuff with me that my body was not happy about.

Today I went again but this time it was a guy. They didn't tell me I'd see a guy. I really only went because I had talked to the girl. Now I'm not sure if I will go if he can do it whenever. I felt really awkward with the guy. He immediately did the electricity but he didn't put it on my shoulders instead he put it below my belt line and the center of my back. I was defiinitely more tense with him doing it than the girl.

When I go back on Friday I will probably tell her if she can't do it then I don't want to come in. The good thing is that in 3 visits I do feel better and my back is not hurting half as bad. I feel much looser and it's not bugging as much to turn my head. I just don't know if I can have the guy twisting me around.

Surface sEMG

2009-10-28T10:06:00.000-07:00

Anyone ever had one of these done? We had a health fair at work today and they did this on me. The chiropractor on site said I had too much stress and muscle tension and that I needed to see a chiropractor. It was very interesting!

The one on the left is a normal person and the one on the right is mine.

Shape Ups

2009-10-26T09:39:00.001-07:00

So I've really been wanting them but when you have a kid you don't find the money to spend on yourself when there are probably 50 things they need instead - but not really - you just think they need.

I keep talking about these shoes and that with my broken foot I wanted to try a different type of shoe. So I came home to a gift from Haven and Daddy! thank you

They are the new Shape Ups from Skechers. They come with a DVD and book and all this crazy stuff. But like a man I did not read the directions or watch the DVD. I immediately put them on and did every errand I could think of - groceries, house cleaning, walmart, skipping......you get the idea. After about 4 hours my legs were dead! Last night I laid in bed in pain until finally falling asleep around 1:30am. I've had very bad insomniac issues lately.

I am wearing them again today but did take a minute to read the book. It says to start out at 30 minutes a day wearing them until you are used to them! No wonder my bad foot feels like it has a bruise on the outer bone. It also helps me realize I walk ridiculous....I always walk on the outside of my foot because my inside is broked! These shoes don't like that.

So all in all, I really really like them. They are extra squishy and I grow about 3 inches when I put them on! :)

Melanoma - Skin Cancer

2009-10-20T21:38:00.000-07:00

Yes I know they are the same thing but some people don't.

My sister is home and recovering from surgery. Above picture is one of the incisions they did to remove the cancer. The other incision is under her arm where they removed the lymph node. She is doing pretty well and enjoying her meds. She will go back to the hospital on the 29th for more testing and radiation. Hopefully they have stopped it.

Glad you're home Weeliz!

Sleep walking.....

2009-10-20T05:42:00.000-07:00

Well my plan was to get a lot done this weekend but that was foiled by an insane sleepwalker. The last time we were locked up on a high dose treatment Haven spent a total of 5 weeks sleep walking. We even had to zip her in to a bed while at the hospital. Well this time is no different.

My shift is the weekends because I work all week. Haven drained me this weekend. Friday I took some video of her talking crazy. I missed the good stuff but got her yelling at me. That's always funny. But when I climbed in bed it was only the beginning.

Friday I was up until 2:30 am with her screaming and constantly sitting up in the bed throwing her arms and legs around.

Saturday I was up until 4:30am (never a small sleeping break) and she was crazy. She was screaming and yelling at everyone. A few times she yelled for her sister Kendall. She just kept yelling "KENDALL" but never said anything with it. Then she was talking about Disney and what she's going to do there. She talked about her friend Mason and why he wants to go to a farm instead of Disney and that she is not going to a farm. (I'll have to share that story). She was mad a me because I wasn't looking where she wanted me to look.

Then at 3:00 am I heard a noise that sounded funny. I waited and then I heard stomping feet and jumping. Miss Haven was running all over the place. I grabbed her and calmed her down. Then had her sit on the floor while I fixed her bed and changed her. Got her back in bed only to have more yelling. Then at 4:00 am she was up and running again!

Needless to say I spent Sunday with a migraine and slept half the day away. Kris did the night shift and she had him up at 3:00 with the same craziness. I hope these next few weeks go by fast so we can start sleepin again!

Expansion

2009-10-20T05:32:00.000-07:00

We're expanding our family......sssshhhhh

Details to come!!!!

Foot surgery

2009-10-18T18:32:00.001-07:00

Well earlier this week I went to the doctor and scheduled my surgery. I didn't realize I would have multiple doctor appointments just to have surgery.

November 3 - size pre-op papers and review pain medications!
November 3 - crutch training at physical therapy - did you know they have an obstacle course that you have to pass on the crutches before you can have the surgery!

November 5 - physical to confirm I am ok for surgery and more blood work....yea so excited!

November 16 - surgery. They will cut the bone in 2 places, re-align it, and then re-pin it back together - I watched a video of the procedure so I now know what happens. It's not really "breaking" the foot.

I'm not allowed to put any pressure on the foot for the first week and then once I go back in to see her to remove the stitches she will show me how to start working on light pressure.

So sounds like a great Thanksgiving this year!!!!!

Home from surgery

2009-10-18T18:28:00.000-07:00

Well my sister is home. I've talked to her a couple of times. She had a pretty good size incision on the top of her shoulder. They were able to remove everything that was found. Then with the radiation and testing over the past couple of weeks they found a lymph node that the cancer had spread to.

They did a large incision under her arm (in the pit area) and took out the lymph node and part of the muscle at the ribs where it was connected. She will go back to the doctor on the 29th to be retested to see if there is any more cancer in the body and to remove her stitches.

She is doing pretty well considering and has enough medication to keep her looped for a few weeks.

Sister's Surgery

2009-10-16T16:37:00.000-07:00

I received a text from my sister around 11am today that she was at the hospital. They did a bit more radiation, shot her up with dye and waited. About 30 minutes later they got the results back and one of her lymph nodes had lit up showing that the cancer had spread. She would need an incision at that point that would be about 3 inches long to get the lymph node out. They would also cut out all the surface cancer which reached about 1/4 inch down in to her skin.

Around 6:45 pm I received a text that she was now in recovery. At 7:30 pm I would guess that she woke back up because I got another text that she was feeling good and loaded up with Morphine and Percocet. Her husband Mike is with her. I'm not sure yet if she will be going home tonight or not. I get a text about every 40 minutes....so I'm guessing she is passing in and out.

Microsoft and T-Mobile

2009-10-16T12:41:00.000-07:00

Seriously...I'm not just chosing to not call or email or text you! I don't have your info - thanks to my tech savvy friend Torq for informing that blaming T-Mobile was incorrect and I should be blaming Microsoft.

Please send your info over by email or better way is by text - then I can auto input!

SIDEKICK DATA WIPE OUT

NEW YORK - Owners of Sidekick phones may have lost all the personal data they stored on the phone, including contact numbers.

The phones are made by a Microsoft Corp. subsidiary and sold by T-Mobile USA, which say many Sidekick owners' information is "almost certainly" gone after a failure of servers operated by Microsoft wiped the data out. The companies said they hoped to update customers on recovery efforts Monday.

The phones have been troubled by data outages for more than a week. Some users attempted to restart their phones by removing the battery, which erases data on the device. Normally, the data is then restored from servers, but with the server data gone, the device is left empty. Because of that, customers are being advised not to let the battery completely run down either. It's not clear how many customers have been affected, or how many Sidekicks are in operation.

The phone has never been a huge seller, but it's very popular among young, urban customers, and it has had a certain cachet as a celebrity phone. Most famously, Paris Hilton used a Sidekick.

Users have appreciated its large QWERTY keyboard for text messaging, a feature now copied by mainstream phones. Microsoft bought Danger Inc., the maker of the Sidekick, last year in an attempt to revitalize its "smart" phone software portfolio.

Sister's Surgery

2009-10-16T12:39:00.000-07:00

thank you everyone for writing to me about my sister. This is her with her daughter Selena.
Over the past couple of weeks she has had scans and had a small bout with radiation to prepare. She is headed in to surgery today and hopefully I will be able to talk to her tonight.

PS: yes I did ask her if she was the nightlight for the kids after her radiation! :) Hey you gotta laugh when you can.

Love ya weeliz!

Manic Monday

2009-10-16T12:37:00.001-07:00

Well I can't say it's too wonderful!

First I decided after a couple years of pain that I would go to the Podiatrist myself. After a few x-rays I find out that my big toe is fractured a couple places and it was originally fractured about 15 years ago. Who knew? I also have severe Plantar Fascitis due to the fracture in the toe joint which has pulled the tendon from my heel!

First I'm on 2 weeks of steroids for the inflammation and I have to wear the boot to keep my foot immobilized. It is also affecting the tendon in the back of the foot because its all connected. After 2 weeks I go back to the doctor to advise her when I will go in for surgery.

The surgery will be to rebreak my foot, stick 1 vertical pin in the toe and 2 horizontal pins in the side after they shave down the bone. After 4 weeks they will remove 2 pins in the side. In total she said it takes 12 weeks to recover. So I told her I'd get back to her after I figure out what's going on with Haven.

So until surgery I'm required to wear the boot except in showers or driving!!!! And it hurts!

Then driving back from the doctor something flies off the truck in front of me killing my tire! So now I'm spending my evening at Goodyear fixing the flat in hopes of going home and ending this wonderful Monday!

Hope everyone is having a better Monday than me!

Finally find a doctor

2009-10-16T12:35:00.000-07:00

This isn't about Haven - really - but in a way it is. I have had insane migraines for the past few years - after having surgery in 2001 to get rid of them.

Well I had given up on doctors after going through 5 different ones. I talked with Haven's pediatrician Dr. Cooper and she urged me to go and see her husband who is an Internist. Well....I had my doubts but I scheduled the appointment and met with this nurse practitioner. I went in with a list of items needing fix but two items were the high priority...migraine and my right foot.

All the other doctors had given me Percocet, Oxycotin, and Morphine....all I ever wanted was Midrin. Well NP Kathy found the generic form of Midrin and was able to get it prescribed to me!

FINALLY!!! She also put me on Nortryptilin - which is a pill I take each night to help in keeping the migraines away. She also felt I would be good on this since my blood pressure has gone up a bit from the usual. It was listed in Prehypertension.....which is extremely odd for me since I'm usually below low. We did a lower dose so my BP wouldn't drop too much. We also did a bunch of blood work to check my liver, kidneys, sugar, thyroid, and anemia. I'll get those back by next Friday.

How does this help Haven???? Well I've had a constant migraine for the past 2 weeks and as soon as I'd get home from work I'd go straight to sleep. Well this entire weekend I have been able to hang out and play with Haven. So nice.....

Thank you to both doctor Cooper's and NP Kathy....I finally found a doctor!

My Sister Wendy

2009-10-16T12:32:00.001-07:00

I just want to share my sister and her family. Wendy and Mike were stationed in Hawaii for the past four years and this past May they moved to San Diego. She has a great California look.... My sister and Mike have been married for at least 100 years it seems like and he's been stationed in Iraq four times since having their first child, Mike.

My sister recently enjoyed turning 31 years old. I haven't seen my sister in 5 years. Last I saw her Haven was about 2 months old.

They now have 3 beautiful children: Mike (10), Selena (8), and Kristana (5).

My sister just found out today that she has cancer and will be seeing her Oncologist on September 14th. I would just like to ask that all those who pray and think about Haven throw my sister in there. Her family needs her and so do we!

EDIT: My sister has been diagnosed with Melanoma - I honestly didn't really know what that was or how bad it was. I think I hear it all the time on commercials. But if you click on the word Melanoma above you will get a full definition of this cancer. It is the most dangerous of skin cancers. She did have a hard lump removed from her shoulder - it was sent to 2 different labs and both came back with the same diagnosis. She is now going in to have her lymphnodes tested and an MIBG to check to see if it has spread to other organs.

Love you lots Wendy!!!!

Migraines

2009-10-16T12:30:00.000-07:00

So what gives me a 4 day migraine!!! Seeing the medical bills this weekend does it! This is the stack of medical bills this past 4 months. Thanks to Kris for the wonderful pic.
We were able to use the money from an earlier fundraiser to pay the first quarter and will use the money raised from Haven's benefit ride for these. Its amazing how fast they can pile up. But being away from home for so long just overloaded the mailman! Maybe they should save a few trees and stop sending them!!!

thanks Dad and Jeannie

2009-10-16T12:28:00.000-07:00

Just a huge thank you for your help over the past year with giving us Lauren and now helping with the BMT housing. I honestly can say we'd never be able to pay for the BMT housing and everything else. I was informed yesterday that you paid them on Monday and that is huge.
thank you so much!

Where I've Been in 34 Years

2009-04-25T07:30:00.001-07:00

Hong Kong, China

Innsbruck, Austria

Schweinfurt, Germany

Cabo San Lucas, Mexico

Flagstaff, AZ, USA

Aliso Viejo, CA, USA

Joshua Tree National Park, CA, USA

Colorado Springs, CO, USA

Moab, UT, USA

St. George, UT, USA

Create your own travel map or travel blog

Travel Info at TripAdvisor

Awesome.....so I switch to gmail and am bombarded with SPAM!

2009-04-23T06:37:00.001-07:00

This is to officially inform you that (ATM Card Number;5299751493779935 with a fund worth 6.8 Million Dollars has been accredited in your favor, contact Mr Dave Walker at fdelivery79@live.com with the following for claims, Full Name:Delivery Address: Age: Occupation: and Phone Number:

Best Regards
Mr Dave Walker

Fun memories

2009-04-19T19:22:00.000-07:00

Williams, AZ.....our 2nd time driving cross country.....back to California!

Hiking up at Holy Jim!

Grand Canyon.....on our way to CA from Virginia!

Titus Canyon -- I could live in Death Valley!

Somewhere in AZ. I have no idea where. On our many drives between coasts we'd often pull off the road and take a dirt road to where ever it led us!

Getting stuck in the sand dunes!

The one and only time I will ever snorkel...ever....Cabo San Lucas! I have never swallowed so much water in my life!

Badwater --- of course, Death Valley! It's like Disney to me.

Climbing Mt. Whitney -- about 13,000 feet here. Memory note: I had just purchased a new Honda Accord...after 3 days of climbing up the mountain we came back down only to find my car completely destroyed by a black bear. Claw marks all over the door, windows missing, the backseat totally destroyed. There was no food in the car but he was trying to get in to the trunk.

Camping in January in Death Valley -- it was FREEZING!

Hiking Big Bear!

Dating years....climbing the fire tower in Big Bear

We moved to Colorado for a brief stint - - this is another fire tower we climbed

Butler Peak - Big Bear --- nice gas tank behind us

Snowboarding........

Death Valley - again....I really could live here.

Blasting in to the past

2009-04-19T19:05:00.000-07:00

I have been scanning photos I have found and sharing them on facebook with family and friends. It's been fun - they've been throwing them right back at me. I know Candy has been enjoying it!

Senior Prom......amazing....check out my hair! It was so high in the front yet so short in the back! What is the V split at the side? It's so funny too look back!

My best friend Stephy. I have no idea what we're doing but we're laughing and that's what matters. This was during college.

My brother and I in Gettysburg. This was my red hair phase. I remember taking this photo. With my brother's pose I know exactly who took the photo - check out my cool Bengals sweatshirt! I have to get down in my dad's crawlspace to get my photos from the football games. Now those were good times!

This....This is a bad and funny memory. This was the first ever trip to Gettysburg. Dad, Mom, Tommy, boyfriend, and I stayed in this tent together. All I can remember is "The Arm" and my mom getting so mad about the humidity and bugs. We've never camped in Gettysburg again!

Chopped off the hair again! This was Catalina Island with my cousin Tasha and aunt Candy. I wanted them to come out and visit me in California. My aunt had finished a few years of rehab for surgery on her brain aneurysm.

Old photos

2009-04-14T09:44:00.000-07:00

So, I threw some old photos up on Facebook of Stephy and I and she threw them right back at me......these are so funny. I have been laughing all day!!!! These are from like 94 - 96......awesome!

Thanks Steph

One of the million Gettysburg trips.

My dad and his ridiculous Star Trek shirt - Gettysburg

I'm gonna guess that we thought we were cool.....I'm not sure

My mom and dad in 95....Mom still looks the same!

Stephy and I at the word processing center! :) This is blurry because Steph was so cool she bought a 3D camera and took photos.

Winning Picture of the Day

2009-04-14T06:27:00.000-07:00

This is the best picture EVER!

Yoda is Mason and his sister is R2D2.

LOVE IT!!!!

Photos!!

2009-04-12T16:54:00.000-07:00

So.....this is mom's blog........Well I was scouring through photos this weekend as I recently connected with many old friends on facebook and I had seen a few photos from high school and college. One irritating thing this weekend was that I have been searching for my wedding photo album....which seems to have disappeared. I remember Haven looking at it a few months ago but haven't seen it since!

ha ha....senior year in high school!

Senior year prom....I remember shaving part of my hair and cutting the rest really short. My hair was probably a bit past my shoulders and I decided to let my boyfriend at the time perm my hair! Well, I didn't like it and at around 2am I decided to take it all off. When my grandpa woke up in the morning he made me go to the salon to try to fix it and when they couldn't do to much too it he really wanted me to get a wig. Well, it grew out and grandpa made it through it!

Oh and prom was fine...we went for pictures and then went camping. Who really goes to prom anyway!?

This was my bestest friend in High School - Wendy - amazingly I found her through Facebook recently. And to a major surprise another girl I grew up with (she lived a few houses down) Heather was also good friends with Wendy. Just proving to the three of us that it is an extremely small world.

College....how fun....it was not! But I sure wouldn't mind looking like I did back then! :)

Working at the bookstore in college.....we did more fun than work. Especially since we all pretty much worked in the warehouse and roamed the floor.

Stephy - my super best friend in College. We did everything together....worked at the bookstore, traveled to Gettysburg MANY times a year, visited my dad, and skipped class to head to the new mall. Again after about 11 years we reconnected on Facebook -- next time I'm in Ohio I can't wait to meet up with her and visit her family! :)

Mom's Site

2009-04-08T20:49:00.000-07:00

This is Mom's site...Mom's frustrations....Mom's anxieties....Mom's happiness....Mom's love for her baby

Thank you for the birthday cards!!!

2009-04-06T07:29:00.000-07:00

I was sure someone said getting older would be easier!!!

Really....I thought I was going to be able to slip past #34 without anyone noticing! :) Dad and Jeannie (G&G Beard Off/Sing) --- thank you for my pedicure! I will definitely be using that. I think I can spare an hour for myself!!!!

I came home Friday from a long week at work and there was a beautiful sunny flower bouquet with a super smiley cup. Thank you Grandma Ohio, Aunt Candy, and Aunt Jill for the beautiful flowers. Now I thought the bear was mine but the card said "Haven's Bear"! :) So we both enjoyed my birthday. Definitely gave me a huge smile!

Friday we had Quiznos and I must say - after 24 hours of severe food poisoning I will not be going back there for a long time. I thought I was going to die. Too bad - because it was my favorite place for subs!

Saturday evening Haven got me LOST Season 4 on DVD.....I have been waiting for this but just couldn't rationalize it for myself. :) But next weekend is a long weekend so I will be fully caught up! I missed the entire season last year because we were at hospitals and then always too tired. This year has been the same....so hopefully I will get season 5 for Christmas.

My dad, brother, and Katie had a dinner and mini cupcakes for me for my birthday and then we all played Rummy. Of course, Katie once again cheated somehow and won! The kids stayed up past midnight partying. Then my brother left for Hawaii at 3am today. He'll be back in 4 months.

We sold the Wii to Stryder. Haven hasn't played it since Christmas because she says it really hurts her when she has to shake a lot. So that money will happily go in to her account as she is needing more and more lately. We did take her out to get two more Leapster games with a bit of the money. She takes the Leapster to the hospital all the time so this is a better investment. She also got a new summer dress and two new night gowns. So was extremely excited about the little shopping trip.

All in all - if you forget the food poisoning (sorry dad) - it was a great weekend and today we planted flowers and hung out.

Love to all

What's wrong here.........

2009-04-01T07:21:00.000-07:00

I am very frustrated and angry and all in one totally helplessly reliant on research articles which really tell me nothing except that this whatever it is just straight out sucks. I have been looking at places for assitance - my daughter is listed with a seriously life threatening disease that could easily KILL her. But since I make more than $21,000 a year and she's not really dead yet I do not qualify. So if I make $22,000 a year with a family of 3 and only one parent work at that salary we should be good to go!

How life threatening does your child have to be to get help? Does my child need to be on a vent to get help? NOPE....because that doesn't really matter. Mason is on a vent 15 hours a day and was turned down for home nurse help because HE'S NOT ON VENT 24 HOURS A DAY! His mom works and dad is required to be with him during the day...so dad can't even work. I'm going to assume they make more than $21,000 a year so a double wammy - because honestly you can't have a family of 4 on that salary. Well, I guess we could if we all went on wellfare. I work and dad stays with Haven. So maybe we should all just quit our jobs once we find out our children are sick and could possibly live because then someone will give us assistance.

But then really what is living? Does living mean spending 75% of your childhood in a hospital, having no friends, not going to school, be stared at constantly by very rude adults who should know better. I remember riding my hot wheels and playing in the dirt and going swimming in the ocean. My daughter can't "play" --- because her breathing goes crazy and heart rate increases so high that she is worn out within 2 minutes and has to sit and sleep for a while.

We sold the Wii because she couldn't play it anymore - it made her too tired. Last night I asked her how she slept the night before. She gets mad when we ask because she says we know better than she does. So I rephrased it: How did you feel when you woke up? She sits for a minute and says: Mom, how come when I wake up in the morning I'm really tired?

A life threatening disease is more than just the disease. It's the no sleep, constant 24 hour worry, the possible infections a common cold could bring, the multiple doctor visits, the multiple doctor visits with no answers, the mulitple doctor visits that produce more questions....the fact that we have a disease no one knows anything about.

So I decided to stop researching ROHHAD and go on with the breakdown of each thing Haven has been diagnosed with to see where that gets me:
Neuroblastoma Cancer
Paraneoplastic Syndrome
Hypothalamic Dysfunction
Nocturnal Myoclonus
Autonomic Dysregulation
Rapid Onset Obesity

I will also keep checking in to the other areas where we originally thought Haven was headed: Pheocromocytoma
Cushing's Syndrome

Because maybe this is where other people have started and found out something new. I am also researching under LO-CHS/HD -- because there is a lot more info there than ROHHAD in google and other listings.

Vicki - Leigh Ann's mom - has been a crucial part of my research. She has over 15 years of experience with this horrible disease. Even though Leigh Ann passed away in 1998 she has still cared for all our children and has been constantly researching as to what took her daughter from her.

My lone mom in Europe -- awesome information -- sometimes way over my head and it takes me a couple of weeks to research everything she's talking about. But she has given me things I need to question from our doctors as well.

Julie - Mason's mom - she is my backbone....she is my constant support. She even admits she lets me do the research but I get something more important - a super duper friend and someone that makes me laugh even though we're fighting this endless battle.

I just can't believe our system works the way it does and for me to get help I must quit my job or my child must be about ready to die.

What Can We Do???

2009-02-11T07:37:00.000-08:00

Well - I figured I better use my lunch break to update or get some thoughts out because I know by 7pm tonight I will want to be asleep. We're exhausted....this is tiring and draining. I can't even explain it - only someone who is or has gone through all this can understand. We go insane with worry and we can't think about anything else. I can't believe how many doctors we talk to constantly. We meet every evening to compare notes after Haven is asleep and review any happenings or changes we've noticed.

Honestly, I don't need a doctor to tell me Haven isn't doing well. We can see it. She is not getting better and we can't see any changes for the good. We can absolutely see where they are getting worse. I talked to Haven's doctor yesterday and I couldn't even be upset. I just told him "this is wrong and this is worse and i don't know what to do anymore".

I know there is no cure for ROHHAD and currently there isn't even a treatment to start with. So we're just shooting in the dark. The chemo she has been on has not made a difference for the good. She still has 2 weeks left before they will discuss changing chemo treatments. To me - if it hasn't happened in 6 weeks it won't happen in 8 weeks.

We feel like "this is it - we can't do anymore" but then we look at Haven and this can't be it. This can't be all we can do. Haven is at the hospital a minimum of 3 to 4 days a week - EVERY WEEK. We administer chemo two times a day. Her blood pressure has slowly been creeping up but we keep giving her the blood meds. We're selling as much as we can to help pay for things - even collectibles I got when I was Haven's age! I have no need for them now - she needs it more than I need a doll or something.

She has gained almost 10 pounds in a month. I'm tired of people looking and staring at her. She doesn't want to go anywhere because she sees kids looking at her. She looked at herself in a floor length mirror for the first time and was asking about her scars because she hasn't seen them before. Her chest is constantly bruised because her port is accessed so much. She is taking 4 naps a day and we consider sleeping at night a nap now. She's up every 2 or 3 hours - so it's not really sleeping.

We have :

Orthopedic Surgeon tomorrow for her spine
Ultrasound for her legs Feb. 24
Eye surgery March 26
Blood gas check on March 26
Every other day visits for blood levels

Waiting on sleep clinic call back
Surgeon for the tumor in her back should be calling for an appointment

And in all of this I haven't reminded the Oncology team that we need the next MRI to check the Neuroblastoma tumor in her abdomen. I think we could sleep for a week.

I am thankful for all our friends that send us encouraging notes and to the world who send Haven cards and letters every day.

Meeting with Dr. Cooper

2008-11-28T07:53:00.000-08:00

Well we had a GREAT meeting with Haven's Pediatrician, Dr. Cooper on Wednesday before the holiday. We spent about 2 hours with her - amazing how fast time flies when you have so much to talk about. Really I didn't know what we were going to do at this meeting and I didn't know where to start. But once we started talking it was easy.

We received A LOT of information and copies of recent articles written by other doctors about Haven's syndrome.

We received official copies of Haven's medical records with our latest meetings of doctors. We also received her last sleep study report. I found out things I didn't know just last Wednesday. No one had told us some of this stuff. So I'm a bit shocked.

The next few posts are very much like going to med school...or at least I feel like I'm back in undergrad classes! Read it if you would like - it helps me to put things down and do a cross comparison. It's like making a list and checking it twice.

I can't believe what we didn't know or were in denial of. Thank you Dr. Cooper for all your help and thank you to Nurse Peggy for hanging out with Haven for 2 hours and playing with her!

A Diagnosis.....we were not ready

2008-11-12T07:51:00.000-08:00

I just found this on the Internet today and it seems to have been written in the early Spring of 2008. It is all about Haven. The doctor on the front is Haven's Endocrinologist - Dr. Cooke. Dr. Ido Paz-Priel is Haven's Oncologist.

If you would like a copy of the article please email me and I can send you a PDF. It seems as though they actually had her condition figured out last Spring but we were not aware yet.

A link to the article on the web: CLICK HERE
Haven's article is on page 4

Taking Charge....

2008-11-11T07:50:00.000-08:00

So - there are two ways we can do this.

1. We can sit back and go down with the ship

or

2. We can get off our butts and fight

This past summer I went down fast with the ship and ended up with an almost severe mental breakdown and was in the hospital for a possible heart attack. After Monday's meeting and being depressed for almost two days I decided I do not have time or energy for that and Haven needs everything I can put in to this.

There are only about 27 cases of this disease known. That's not thousands or even hundreds - just 27!

Yesterday I did a lot of research on this syndrome they are saying Haven has. I won't say it yet because I personally don't believe she has it. What I know about it:

1. Weight increases rapidly around age 2 (Haven gained 25 lbs at age 2.4 and another 12 lbs at age 2.8)

2. Hypothalamic Dysfunction around age 3 (Haven lost a lot of natural functions around age 3 - had her 2nd MRI after her 3rd birthday)

3. Immune issues around age 3.5 (Haven's immune system started attacking her brain around age 3.5)

4. Hypoventilation problems around age 6 (Haven has had sleep studies and they were not too off but were off a little)

5. Fatigue

6. Decreased sensitivity to pain - this is weird and we've always told doctors about this - she does not feel pain and can withstand multiple needs put in her veins all over her body.

What Haven doesn't have

1. Growth issues - although she has not grown any since Nov. 2007 - we believe this is due to the high level of steroids she is taking

2. Adrenal failure - Haven's kidneys are fine

3. Hair and skin changes - we believe due to chemo and steroids

4. Cold extremeties - Haven was actually was fine before surgery. She now has one really hot foot and one really cold foot.

I have finally found another mom that has a child with the same "diagnosis" as Haven. I emailed her and heard back from her this morning. I'm excited to talk to her. She sent me her phone number and I hope to connect with her this week to compare notes.

Doctor visit

2008-11-10T07:49:00.000-08:00

HI

I have decided not to do an update from yesterday's meeting with the doctor. We did not receive very good news at all and until it sinks in and we understand a little more I will not throw it out for everyone. The doctor is going to call me sometime this week to make sure we are ok and if I have any questions.

Currently I am not sure if we need to search for a new hospital or just take what they give us.

Hospitals I am looking to contact are:
UCLA
Ceders-Sinai
St. Jude

As I am not about to take responsibility for my emotions at this time I will stop. Someone has to know something about all this and how to handle it.

I hope everyone has a great week. I will try to have an update by the end of the week.

Thank you all for your love and support of our little girl.
:)
M

Just A Mom

Lymph Node follow - up

Infected Lymph Nodes

Awesomeness

Photos

ending a debate

Why? Why?

Flowers.......

Gardening...is it done yet?

Life in Perspective

Foot

Locks of Love

My cherry tree

Spring Time

X-rays for the foot

Finally a new phone....again

Neurology

Gmail spam...WHATEVS

Tired

This is supposed to fix me

Somnambulism

Sleep Walking

My ridiculous foot

Home from Honduras and ready for work

Missing the blizzard!

The Slowskys

More photos

Blizzard 2010 - thundersnow

Countdown begins!

Historic Winter Storm

*sigh*

Reproductive Endocrinologist

Foot doctor

PIN HAS BEEN REMOVED

S.W.A.N - Syndromes Without A Name

Jacked up

Thanksgiving

Endometriosis

Immobile

RARE DISEASE DAY 2010

ROHHAD - Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, Autonomic Dysregulation Neural Tumor

H1N1

Visit to doctor

Foot surgery

Prepping for Surgery

ROHHAD NEEDS HELP

FACEBOOK

Revimmune or Rebooting the Immune System

Chiropractor

Surface sEMG

Shape Ups

Melanoma - Skin Cancer

Sleep walking.....

Expansion

Foot surgery

Home from surgery

Sister's Surgery

Microsoft and T-Mobile

Sister's Surgery

Manic Monday

Finally find a doctor

My Sister Wendy

Migraines

thanks Dad and Jeannie

Where I've Been in 34 Years

Awesome.....so I switch to gmail and am bombarded with SPAM!

Fun memories

Blasting in to the past

Old photos

Winning Picture of the Day

Photos!!

Mom's Site

Thank you for the birthday cards!!!

What's wrong here.........

What Can We Do???

Meeting with Dr. Cooper

A Diagnosis.....we were not ready

Taking Charge....

Doctor visit

sigh