Pumpkin Carving

Ah!  Let the craziness that is the holiday season (being the 90 or so days from the middle of  Oct. to the middle of Jan.) begin!

Today we did our first "official" act of this year's holiday season...we carved Sara's pumpkin!  Now I know those of you who know me well are shocked by this since I can't stand mushy, squishy, grossness at all.  But Sara really wanted to carve it, so Poppy to the rescue!  My dad sat down with Sara and they had a great time, and when the time came for Sara to stick her hand in and pull out all that mess...she refused!  Apparently she's been hanging out with me too much!  Oops!

Here are some of the pictures I took to memorialize Sara's first pumpkin carving experience!

Sara watching my dad clean out the pumpkin!

Drawing the face on the pumpkin!

Sara and her Jack-O-Lantern!

The three of us when we're all done!

NF Buddies

Last night Sara and I got the chance to meet up with Kelly and her son, Travis.  Travis is 3 years old and has NF like Sara.  You can read his story on his blog.  I'm so happy that Sara has someone to share her experiences with.  I'm so grateful that she isn't alone any more. 

Travis is a wonderful little boy!  He's so full of life and has such an amazing attitude.  He's cute as a button too!  They're a match made in heaven....and here's the proof!  I couldn't keep pictures this cute to myself!

How cute are they?!?  I just can't get over it!  And I know that this is a relationship that will last a long time.  Sara can't stop talking about how much fun she had.  I can't wait till we all get together again!

NF Clinic Visit

Yesterday Sara and I attended NF Clinic at TCH.  This is a multiple disciplinary clinic where several specialist come together at the same time and check on the kids and make sure that we're all on the same page and doing what's best for Sara.

First we saw Sara's rehab and physical therapy doc.  She's great and really informative.  Curtis brought up the idea of amputating Sara's leg, which has been on the "possibilities" list since before she was diagnosed.  He starting to think the time is getting closer, and I'm not at all on the same page.  We had a long talk about how we would know when it was time to make that decision, and all that would come with it.  She offered to let us visit the amputation clinic, or come to another appt with just her to talk about it.  I have no intentions of making this decision right now.  I don't think its needed, and Sara doesn't want to do it.  And if Sara doesn't want to do it, that's all the reason I need to say not yet!  We also talked about getting Sara an adaptive tricycle for her to ride, which is great!  And lastly we talked about options for maybe FINALLY getting her out of diapers.  Apparently there are options for Sara, which I had no idea.  So I need to review what she said, do some research and figure out what I think is best for her.

Next we saw neurology.  I had almost no concerns here, so she just checked Sara's eyes and reflexes and reported that I needed to make sure to get Sara in for her yearly eye exam.  I got the reminder post card last week.  She said she didn't see any issues, but it would be good for her to have a full exam.  Its very common for NF patients to have problems with their eyes.

Then we were seen by neuro-oncology.  I've been in touch a lot with this doctor recently while we've been changing the dose of Sara's medication to find a limit that works better for her in controlling the damaged nerves in her leg. All I wanted to ask was if it was time for Sara's PET scan, which we are suppose to do every 2 years.  This scan checks her tumors to see if any of them have turned malignant.  We don't suspect at all that's the case, but always a good thing to check.

Then we saw the geneticist.  Sara's regular doctor was out because of a family emergency, but the the doc we did see was wonderful and very informative.  We just talked about if there was any new medications or drug trials available, and no, there isn't.  So this was also a short visit.

Lastly we saw Sara's neuro-psychologist.  NF patients have a lot of issues with learning disabilities, so this is something we've been tracking very closely.  I don't think Sara has ANY issues learning, and I was right.  We tested her again this time (its been almost a year) and Sara did great.  We test in 4 areas: spacial and visual processing, fine motor skills, receptive language skills (Sara's understanding of language), and expressive language (how Sara uses language).

Spacial and visual processing is checked by asking Sara to stack blocks, match pictures, name colors, count, identify letters, fold paper, and other like things.  The test is scored in relation to how many months old a child is.  Sara is 44 months old, and in this area she scored at 54 months.  Meaning, Sara is almost an entire year ahead!!

In fine motor skills Sara was ahead quite a bit last time we tested her.  This was due to the fact that she hadn't been learning to walk, run, and jump like other kids and therefore had more time to commit to learning fine motor skilled activities.  Now she has evened out, and scores at 44 months.  She can cut with scissors, hold a pencil correctly, and draw certain shapes fairly well.

Sara's receptive language skills is another area that she scored very high!  She absolutely understands language, and what you tell her.  She can follow three step directions, and do many things when asked.  She scored at 59 months in this area.  Basically she has the understanding of a 5 year old (or 60 months).  Guess I can't get anything by her any more! 

Lastly, is Sara's expressive language.  Last time Sara was behind in this area, and started having speech therapy at school.  Yesterday's test showed that she has caught up very well, and will no longer need therapy.  She is expressing herself in an age appropriate way at 45 months.  I'm so excited she's caught up to her peers.  I think school has really helped this!!

This was a great visit overall!  I learned some new things, and the testing confirmed what I suspected.  My daughter is super smart!  Of course I came home with loads of homework...appt to make, things to think about, and time to return for Sara's new shoes in a couple weeks. Its always nice to know that I'm not over looking anything; it helps me sleep at night to know I'm doing all I can for her.

Awareness Day!!

I know that some of you reading this blog already know what today is, but some of you don't...so here is your educational lesson for the day!

Today is National Pregnancy and Infant Loss Day!  Today is the day that we all get a chance to take a moment to remember those we have lost along the way, no matter how briefly they may have entered our lives.

This "holiday" (I use that term loosely) was requested by parents and approved by congress as an effort to make the population more aware that miscarriages and infant deaths are more common than most of us think.  Many families are affected by this every year.  And no, we never "get over it" and we shouldn't be asked to.

Today all of us who have been through a loss get to bond together.  Today we will light a candle at 7pm, no matter what time zone your in, and let it burn for an hour in remembrance of those babies that we have lost.  This is the tradition for this "holiday", and I hope that everyone who reads this will participate, even if you haven't survived a loss yourself.  You can do it to show support to those who have, and help us put a wave of light across the world for our angels to see.

I am the proud mother of an angel that touched my life, and the lives of those around me, ever so briefly.  Its been 5 years, but I still think about it every day.  Today I light a candle for my angel, and all the others I know who are the parents of an angel along with me!

I Wish I Knew the Answer!

I have this friend who is going through a hard time right now!  She just got divorced after an ugly battle over finances and custody of their son, she's struggling to see the bright side of any thing, and she thinks she's fatter than an pregnant elephant.  And its totally NOT true!!!!

She's beautiful, amazing, stunning, creative, kind, loving, generous, smart, strong, funny, and the best friend you could ever ask for!!  She's an amazing mother, and she's the best unofficial therapist I've ever had!  She's the voice that leads me to the light when I'm struggling with certain things.  And she's always honest with me, no matter how much it might hurt!!

I wish I knew what to do or say that would help her to realize how beautiful she really is.  I can't change her self image, she has to do that.  But I wish that there was some way I could make her see that I love her for who she is and what she looks like RIGHT NOW!  And I want her to know I'm not the only one who thinks she's stunning.

Hey Girl,

I love you, and you're beautiful!!  That's all there is to it.

Julie

NF Symposium

Today Sara and I attended the NF Symposium to hear information about NF and what is going on in the community.  My dad attended the lectures with me while Sara went to the Kids Club to play. 

The lectures were full of valuable information, although most of it I already knew.  The first lecture was specifically about plexiform neurofibromas (pNF), which are the fancy medical term for the type of tumors Sara has.  Mostly she talked about what they are and how they work, which I mostly already knew.  This lecture did hold the one bad piece of information of the day, which is the fact that Sara is at increased risk for having one or more of her tumors turn malignant (cancerous).  Sara has a 10% chance of this happening.  There are several drug trials currently going on involving children with pNFs.  They are all in Phase I or Phase II currently, which means they are years from being completed, let alone FDA approved.  But hopefully one of them will show progress in stopping growth of the pNFs, or even shrinking them, and years from now there will finally be a medication to help NF patients.

The second lecture was about cognitive function and learning disabilities in NF children.  This lecture was fascinating, but I'm not to worried about Sara in this area.  The doctor stated that children with NF show signs of learning disabilities very early on, and Sara is actually at the other end of the scope in the fact that she is excelling beyond her peers.  Apparently most people with NF have a lower than average IQ rating, but again I doubt that is the case with Sara.  The doctor who gave this lecture is one of Sara's current doctors, so after her lecture I asked that we retest Sara at NF clinic (which is on the 18th) because I wanted to see where her cognitive skills sat currently.  I know where I think they are, but that may not agree with what the test shows.

The third lecture was about eye care in NF patients.  Honestly, I tuned out for the majority of this one.  The speaker was boring and monotone.  And all he pretty much talked about was tumors in the face and near the eyes, none of which Sara has.  He used a lot of big words, and most of what he said was beyond me.  It just wasn't a very good presentation in my opinion.  He obviously didn't keep his audience in mind.

The last section of the symposium was a panel of 4 people currently living with NF.  I found it interesting to hear what they had to say, but none of them where younger than 25.  And by the time Sara is that age, there will be so much more known about NF and maybe new treatments.  So I didn't find this all that useful, but maybe as Sara gets older I will.

Over all it was a good day!  I learned some new things, some good and some bad.  But mostly it was great because I got the chance to spend time with other members of the NF community, and that is always a good thing.  Sara got to play with other kids her age, some with NF and some without, and I got to discuss NF with other parents.  Since there aren't a lot of answers for NF, mostly just questions, its just nice to know that there are other people out there and you aren't alone.  Since science can't always provide the answers, you sometimes I have to come up with them on your own.  And honestly, who better to brain storm with than someone else navigating the same rough sea as you.  Together we are strong!

Independence: Blessing or Curse?

Sara is rapidly getting more and more independent every day!  She's already more independent than most kids her age, but I think she over compensates a little due to her NF.  I've been encouraging this new independence for most of this year, since she really starting showing it back around her 3rd birthday.

But her newest task she's asked to tackle alone is a little out of her league I think.  Would be nice if she was 10 years older, but by then she'll just refuse to do it.  Sara wants to do laundry!  She wants to do it all by herself too, which she obviously can't.  One problem is she can't reach the washer to put the clothes in.  There are lots of other issues as well with this whole idea.  So to compromise, we now sort laundry together, she helps me gather it up by putting hers in the hallway, and she helps me to fold it once its done (which really just means I end up folding everything twice).  She also helps by telling me where everything goes, like I don't know.  Who do you think organized this room in the first place? And do you think I can show her this post in 10 year when she's refusing to do her own laundry?

Sara's other big move toward complete independence has been that I no longer read the story at bedtime, she now reads to me.  We've been working with her letters a lot, and its starting to pay off.  She still reads mostly from memorization of the book and by looking at the pictures, but that is how all small children start out.  It is completely appropriate reading techniques for a child her age. 

We've also started cooking together, which she loves.  I don't have a lot of counter space, but that hasn't been as much of an issue since Sara started helping out.  Now we do everything at our kitchen table since then she can sit in her chair and I don't have to hold her up.  Just drag an extension cord across the dining room, and plug in the mixer.  She loves it so much I ended up getting her a hand-me-down play kitchen for her playroom.  She's played in it every day since I put it in there.  Maybe Santa can bring some play food for it this year!

There are tons of other tasks she loves to do as well, and I'm glad she wants to try new things, but it makes everything take so long.  I sometimes get upset because she takes so long to do everything, and it will make us late getting out the door to school or interfere in some other way.  I'm trying hard to be patient, but there isn't always time for her to do it herself.  And its so much more work for me.  Being a single mom and taking care of a house is a big enough task, but now that I have to do things twice, its twice the job and I'm twice as tired.  Ah, the joys of parenthood!!  A year from now, I'll come back and read this post and probably wish that this was still my biggest problem.  I'm sure by then there will be something more on the horizon that will have to be adjusted to, there always is.

New Pictures!

Last weekend my mom insisted we all get together for some family pictures.  Sara had just had school pictures taken at her preschool on Thursday, and daycare on Friday, so she was well practiced.  She did great, and tried to hog the camera.  She wanted to be in every picture, but there were a couple she didn't get to be in.  And of course, Moosie was with us as well (like he always is these days).

Here are the highlights...

Sara totally stole the photographer's heart!  She even told me I should be entering my baby in a Beautiful Baby Contest.  I don't think so.

Sara with Mommy!

Sara with her Auntie Barb (my sister)!

All the "kids"... (from left to right, and top to bottom)...Barb (my sister), Alexis (aka Lulu), Me, Sara and Moosie, and Brian (aka Bobo)!

And the "whole" family...(left to right, and top to bottom again)...Bonnie (my mom), Me, Brian, Ed (my stepdad), Sara and Moosie, Aunt L.A. (my stepdad's sister), Barb (my sister), and Alexis.

So there you have it, just a handful of the many photos we took!  It was crazy getting the kids to cooperate the whole time, but it was worth it.  But I think for now, I have enough pro photos of my daughter to last a while.  And I'm sure once I get her school and daycare photos, I will be posting those as well.

Two of a Kind...

It would appear that Sara is finally not alone with her NF, or even how it affects her body.

The Children's Hospital in Denver holds a multiple disciplinary clinic for NF patients once a quarter.  After the July clinic, the Genetic Coordinator emailed me and asked me if I would be willing to communicate with a family that had just entered the program.  Their son is 3 years old, and has similar leg problems to Sara, so she asked if I would be willing to chat with the mother about Sara's case.

We have been emailing once or twice a week since that time.  Her name is Kelly, and her son is Travis.  You can read Travis's journey with NF on his blog (There's a link to his page on the right under My reading List.).  I find it very unfortunate that we have to meet under these circumstances, but I'm so glad we have.

And we did finally meet face to face at the NF walk earlier this month!  She has a lot on her plate with 3 sons and a husband, the youngest son with NF.  Sara and Travis were both quiet, and seemed to be just checking each other out.  We are planning to get them together again in Oct. when it will be a little less chaotic.  I can't wait!

I'm so glad that now neither of our children have to face all this alone.  They are close in age, both 3 years old, and they have similar presentations of NF.  I don't know how Kelly feels, but I think it will be great for them to have a friend that is just like them.  I really hope that we will be able to get to know each other much better, our kids get to know each other better, and that we can get together as often as possible.  They live a couple of hours away, so getting together probably won't always be easy, but hopefully we will make it a priority.  And if nothing else, we'll always see each other at the hospital (not that its an ideal place to hang out).

Sara and Travis are no longer alone, but neither are Kelly or I.  I'm so grateful not to feel alone any more when dealing with Sara's NF.  I have lots of support from family and friends, but it isn't the same as having another mother to relate to who is going through the exact same things as I am. 

Thank you Kelly and Travis for coming into our lives!  We can't wait to see you next week at the conference!!

MS or no MS??

Yesterday evening my doctor called to give me my MRI results.  I'm happy to report that the test was negative!  I don't have MS (or a brain tumor)!!!  Its a great relief to know that isn't what's going on, especially since it can't be cured and all they can do is manage symptoms. 

As for how I'm feeling, I'm less tired put still have joint pain.  At this point, I plan to keep notes of how I feel each day and see if it progresses before going back to the doctor.  We have eliminated all the things that the doctors could readily think of, so now its more of a shot in the dark.

Overall, I feel good.  I'm relieved not to have MS, and I'm not as tired.  Things are getting better!

I Survived My MRI!!

I had my MRI today.  It was a scan of my brain to check to see if my mystery illness was MS.  I don't have any results yet; I'm hoping by the end of the week to know something.

As for the scan itself, it went well.  The nurse who put in my IV was amazing, and did a great job!  I don't even have a bruise, which is unusual for me.  All I remember was laying on the table of the machine, her putting in the drugs, and then waking up in recovery.  So all in all, it was perfect!! 

And apparently I sent some texts and made a couple calls when I woke up in recovery, but I don't remember sending them.  So if you got one and it made no sense, sorry about that!  My bad!

The 2nd Annual Denver NF Walk

Today Sara and I participated in the NF Walk to help raise money for The Children's Tumor Foundation.  It was a ton of fun, and the turn out was great!  The weather was much better too than the 2 degrees and snow we had on walk day last year.

I want to take a moment to thank all of you who donated to the cause, or walked with us today!  Sara and I thank you from the bottom of our hearts.  Your support means the world to us, no matter if it is financial, emotional, or something else.  We couldn't do this without you!  Thank you!!!

Here are some of the pics that I took while we were there.  I didn't take any during the actual walk, but before and after.

We got there early, so Sara had time to swing at the playground before starting out our walk.  I think this was her favorite part of the whole day!

This is Sara and I after we walked (well, I walked and she rode). We had hot dogs and chips that were provided for walkers while sitting in the shade of this beautiful tree.

And Kim, this ones for you!  Patrick came to walk with us and show support.  It was a ton of fun, and I hope he had a good time too.  He's smiling after our long walk, so I took that as a good sign!  And no Kim, you are NOT allowed to take his shirt! 

Another successful walk, and another great fundraiser to help find a cure for NF (and probably cancer too since their so closely related).  It feels good to know that I'm helping others.  It was a good day!

Just One Moment...

Today is a sad day in our nations history, and it only seems right to take a moment to reflect on it.

As all of us know, on this day 9 years ago some 3,000 Americans lost their lives because of fear and anger that led to violence.  It was one of the biggest tragedies our nation has ever faced.  And like everyone who was here then, I know EXACTLY where I was and what I was doing when I heard that a plane had flow into the first tower.  I will never forget the moment I realized our entire nation was under attack.

My heart goes out to all of the family and friends of those that lost their lives that day.  I know that many of them are still looking to make some kind of sense for their loss.  I hope that they know that an entire nation is rallied behind them. 

I ask that God give them the strength and comfort that they are still yearning for.  I ask that He continue to watch over this great nation, and all of its citizens.  I ask that He help to bring peace to an angry world full of hate and misunderstandings.

Let us never forget this day!  For when we forget is when history repeats itself!

UNITED WE STAND!

Government Programs Suck!!

Why do we have all these government programs that are suppose to help people who are in need if they refuse to help those of us who really need it?  We all know that people are taking advantage of these programs, like welfare and food stamps.  My questions is how is it that the government thinks its okay to let that happen, when people who really need the help and are working hard to make ends meet can't get it?

Sara and I were applied for a program by Sara's DDRC (Developmental Disability Resource Center) coordinator to get some help with some of Sara's living needs.  But I don't qualify!  I make too much money, even though it isn't enough to make ends meet.  She also applied me to get daycare assistance, but I make $96 too much a month to get that either.  But if I were to quit my job, I would get welfare, food stamps, daycare assistance, government housing, and a whole slue of other assistance free that I would never have to pay back.  Its no shock that anyone on these programs isn't motivated to get a job and do it on their own.  Why work when you can live off the rest of us?

It makes me crazy that I would "make" more money a month not working, than getting up and being a productive member of society!!!  WTF?!?!?!?  Don't they realize that by helping me for 6 months or a year by paying my daycare or part of my rent, that gives me a chance to eliminate some other debt so I can turn around and use that money to then pay daycare or rent and make ends meet on my own?  That it would give me the chance to get on my own two feet so that I would no longer be forced to decide if I should pay a medical bill so it won't go to collections or put food on the table for my daughter?  I have no desire to be lazy and live off the government forever, and I'm not trying to scam them.  But because of the ways these programs are designed (which is horrible and completely useless) I can't get any help.  Instead of helping me for a year and then using that money to help someone else, they'd rather give it to the woman who keeps having kids just to stay on the programs for 10 or 15 years.  She never works a day in her life, and usually the kids turn out to be super upstanding citizens themselves...NOT!!

I'm so over it!  I give up!  I don't know what else to do.  And I hope that the feds don't show up on my doorstep after I post this, but you never know with the way things are going in this country!  I'm sure I'll get one nasty comment from someone who hates what I've said and thinks its unfair.  Life isn't fair people...obviously!  So feel offended that I'm pissed at the government and all the people who take advantage of it, feel offended that I singled out certain people and said not nice things about them, I don't care.  Honestly, I hope this post does make you angry, but not at me.  Nothing will change until the people demand that it does, so be angry if this makes you angry...but do something productive with that anger.  If you don't, then its just a waste.

2010 Denver NF Walk

Sara and I will again this year be participating in the largest fundraiser of the year for the NF community in Denver.  Last year was tons of fun, you can read about it here.  It was one of the coldest days all winter, and the first real snow of the season.  Hopefully this year the weather will be a little better.

We look forward to spending the day with family and friends, and with our extended NF family.  It's going to be really exciting, and its great when we can all get together and work toward finding the answers to this disease.

To find those answers, we need your help!  Sara and I have set a goal to raise $500 for this year's walk.  You can help us reach that goal by donating on our Event Page and making a donation.  Or if times are hard for you, like it is for many of us, you can sign up to walk along with us on the page as well.  Its free to register, and it just takes an afternoon of your time to come and walk.  Know that when you donate or register, you aren't only helping Sara but all the children and adults that are suffering from NF.

Thank you for your support!  We are truly blessed to have such amazing people in our lives.

Falling into Autumn!

It would seem that fall is finally here (and as a result that spring/summer blog theme had to go)!  I swear that it feels like it just fell out of the sky over night...or somehow I fell into it, like traveling to another dimension.  How is it that we're this far into the year already?  Didn't we just start spring a couple weeks ago?  It would seem that time flies no matter if your struggling or having fun.  There are two reasons that I feel this way today.

The first is that it is overcast here and rainy.  Today's high is about 73 degrees, and until now its been 90 or 95 with sunny skies and the occasional thunderstorm.  Its such a dramatic difference that it really feels like autumn has finally arrived!!

The second reason that I know its starting to cool off and the seasons are changing is only for the fact that Sara started her second year of preschool today!  She was excited to go back to her "old school", as she calls it, and see her friends.  Of course being a good mom, I took the morning off work and meet her at school to see her off on her first day.  It was her father's parenting day, so I made special arrangements to be there.  And of course, it was worth it to see how excited she was that I made it and she could share her classroom with me.

Here's my peanut waiting to go inside her classroom!  I swear she's happy to be there...really!!

Here she is inside the classroom with her name tag on and going to join her first circle time of the year.  She was so excited to see all the kids and everything going on it was really hard to get her to hold still long enough to take her picture.  Sorry its kind of blurry, did the best I could.  Stupid camera phones!!

So there you have it, Booga's first drop off at preschool.  There will be many more adventures I'm sure.  Lots of new things going on this school year, like riding the school bus to daycare part of the week.  That should be interesting!  And fall is only here for a short visit it appears.  Supposedly its suppose to be back up in the 90's by the weekend.

I hope that fall is a good season for us this year, it hasn't always been in the past.  But I'm sure this year will be different.  Sara will be learning to read and write, I will be working hard at home and work, and there's always the stress of the holidays to look forward to!  I can't wait; bring it on!

Mystery Illness Update

I was able to schedule my MRI of my brain this morning.  We're doing this MRI to rule out MS as the mystery illness.

I will be having my MRI on Monday, Sept. 13th at 8am.  I have to be sedated for this because my anxiety won't let me hold still when laying in that machine.  I'm not so good with enclosed spaces, not that anyone who knows me is probably surprised by that.

I'm nervous about it, and really just want to get it over with.  Hopefully it will all go smoothly, and I will get the results quickly.

Sara's Newest "I need _____ !" Moment

Sara and I were doing our weekly grocery shopping yesterday after I had picked her up from her dad's, when Sara found something new that she insisted I get her.  Only this time, there is absolutely NO WAY that I can pull this one off (nor do I want to right now)!!

It started when we passed a cart with a new baby boy sitting in his carrier taking a nap in it.  And when I say new, I mean new!  He couldn't have been more than a month old.  Sara looks at him and then turns to me and tells me...

"Mommy, look at the new baby.  He's so cute!  We need one of those."

I kindly explain that won't be happening any time soon (if ever), and she gets all upset.  I explain that you just don't buy babies at the store, you have to make them.  I explained that Mommy couldn't make one right now so she'll just have to do without a new baby.  She asked why, and I explained that I just didn't have all the things I needed.  And of course then had to explain that I couldn't buy those at the store either, that I had to "find" them.  And then she says...

"Mommy, if you can't make one then can we just have that one?"

Thank goodness we were already out of the isle where we'd seen the baby and his mother, and I didn't have to deal with any strange looks from her.  I'm sure my daughter trying to get me to kidnap her child wouldn't have gone over so well with her.

For the rest of the visit all Sara talked about was this baby she'd seen.  She told me that he'd been sleeping, and had a binki like her.  She even knew what color his blanket had been, which I hadn't noticed at all.  She went on and on about him the entire time we were at the store.

But no matter how much she wants one, she isn't getting one from me!  Sorry Sara, but this is the one thing Mommy can't get you!  And no, we're not getting a puppy either.

Neurologist Vist

On Friday, I went to my appointment with the neurologist.  And it went about as I expected.

We talked and he did a complete neurological exam on me.  He says that my symptoms don't seem to be neurological.  He agreed that we should test me for MS, only because I have family history with my dad having it, and that increases my risk enough that we need to check it.  He doesn't believe that to be what it is, but he wants to rule it out just to be sure.

That means having an MRI...which means sedation for me.  Last time I had an MRI it went really badly, and my claustrophobia made my anxiety out of control.  With that in mind, we decided that if we wanted good images that I should be asleep.  It will take a while to schedule the MRI, so when that happens I will make sure to let you all know when it is.  I suspect it will be a couple months before I get it done.

If it isn't MS, then its back to my regular doctor and square one.  The neurologist says that if it isn't MS than he can't help me because it isn't neurological. 

So the journey continues.  Hope to see you next time on "Name That Mystery Illness."

Sara's Evaluation

Sara had her preschool evaluation yesterday, and she did great!  At the beginning of the school year, they give a super basic test to each child attending the school just to see what level their at.  It only took about 10 min, but Sara had a great time doing it. 

Some of the things Sara can do include...
1.  Put blocks in order according to color
2.  Copy a simple pattern with blocks
3.  Draw a circle
4.  Draw an X
5.  Place objects in relation to another objects using propositions (AKA: She can put the block behind the box, in front of the box, under the box, etc. when asked.)

Some of the things that she has yet to learn include...
1.  Writing her name
2.  Drawing a square
3.  Work on answering "When" questions

There was some motor parts to the test, but obviously she didn't complete the lower body portion.  But I'm happy to say that her upper body coordination is great!  Sara is right at a level that is appropriate for her age group.  It is not expected for 3 year olds to be able to write their name, but we hope by the end of the school year she will be able to do it. 

I can't wait for this school year to start.  Sara's excited to get back to see her "old" friends.  That would be in comparison to her "new" friends at the daycare...which she will also attend in the afternoon.  She will get back to doing her PT since she receives that at school as well.  I expect she'll excel this year with the appropriate support, both cognitively and physically.

Tonight I'm taking her on our very first trip to buy school supplies!  She has to have just a couple simple things, like some markers and random items.  Should be fun!!

Let the Search Begin!

My doctor informed me yesterday that all my tests are normal/negative.  That means its time to start heading to see specialists in hopes one of them can figure out my mystery illness.

First up is the neurologist.  I go to see him on Aug. 13th, and I'm sure that he will tell me he wants to do more tests.  So much for quick and easy.

And Sara told me yesterday that if I wasn't feeling good all I had to do was go to the hospital and rest for a few days.  Makes perfect sense in her mind, that's what she does when she's sick.  She even told me she'd stay with me to make sure I was okay.  Too bad it really isn't that simple!

Next Step

My doctor called me this morning and told me that my blood work looked good.  I don't have Anemia, and my thyroid looks good.  I don't have Lime Disease either, but my West Nile test isn't back yet.  That will take a couple more days.

The test did show that I have elevated liver enzymes, but we don't know why.  Could be for a lot of reasons. 

Right now our plan is to wait on the West Nile test, and see what it says.  Based on that result, we will then make a plan of where to go next.  If it is West Nile, then obviously we'll just treat it.  But if the test is negative, I have no idea where we go after that. 

I feel worse today then I have yet, so it is progressing.  I hope we figure it out before it gets much worse.

Back to waiting again!

What Now?

What do you do when your tired all the time??  What do you do when your muscles ache all the time?  Headaches?  Blurry vision?

Well, after having these symptoms for a few weeks, I finally decided to break down and go to the doctor.  I've been hiding from my family and friends that I have been feeling awful for a month or more now.  I'm so tired at the end of the day that the thought of making Sara a PB&J sandwich for dinner seems like a mountain I'll never be able to climb.  My vision blurs on occasion, and it takes it a while to come back into focus.  Let's just say that it makes driving and working really difficult.  The muscles in my back, shoulders, and neck ache all the time...and sometimes just plain hurt.  They're tight all the time, and my joints hurt as well.  My right hip has been bothering me, and sometimes can even make me limp it hurts so bad.

I've reached the point that I can no longer effectively hide how I'm feeling.  And since I can no longer ignore it (which is what my family does), I had to address it.  Today I went in to my doctor and gave him my list of issues.  Told him that the amount of sleep I get seems to have no affect on my fatigue level what so ever...and that my fatigue was getting worse (especially in the last week to 10 days).  My vision went blurry while I was there, so he was able to take my blood pressure while that was happening and it gave us a valuable piece of the puzzle I couldn't provide myself.  When he took my bp it was high at 158/94.  I usually sit around 107/60.  We talked about what I'd been eating, and I mentioned that I was eating considerably less just because I haven't been hungry for some reason.  Most days I force myself to eat because I don't seem to get hungry at all.  My headaches aren't anything out of the norm.  They don't last for several days or turn into migraines, but Advil can't touch them either.  Between the headaches and muscle/joint pain, I eat Advil like candy.

After talking it over, and him looking me over, checking my heart and lungs, he decided to draw some blood and get some tests done.  He said the main things he was checking for was thyroid issues, Anemia, West Nile Virus, and Lime Disease (lots of mosquitoes here).  I know he was looking for other stuff as well.  I have a family history of MS, and there's always those other really scary things to consider.  I should get results from the blood work tomorrow.

Right now I'm just praying that whatever this is that it doesn't get any worse before we figure it out, that it doesn't take a long time to figure out, and that it isn't something that can't be treated once we do figure it out.  I just want answers.  All I have thought about today is the 10 months it took to diagnose Sara's NF, and how I don't want this journey to be that long.  I'm scared it will take that long, what it is, and how my life (and Sara's life) might change because of this.

Like most medical journeys, this is a "Hurry up and wait" scenario...and I was never good at those.  But I have no choice, so I will wait for as long as it takes to get the answers I need.  Good thing Sara's NF has provided me lots of practice.  I have to let God take it from here, and guide me on this journey.  I have faith that he will provide me with the strength I need to find the answers I seek, and endure what I need to while I'm looking.  Please let this be a short journey, and have a good end. I'm scared!

My Dancing Bean!

Who said you have to be able to stand to be able to dance?  Well, if anyone ever did, Sara didn't get the memo.  She dances all the time, and loves it!!

Here's a video of Sara dancing and singing to her newest favorite song.  The song is called Say Hey (I Love You song) by Michael Franti.

Maybe she's headed for stardom!  You never know these days.  She's absolutely has enough attitude to pull it off.

MRI Results

On Thursday, Sara and I headed to the oncologist to get the results of her MRI.  The appointment went well, and we agreed to scan again in 6 mos.

The report states that Sara's abdominal tumor remains stable.  In other words, it continues to grow at the same rate as her body, which is the best we can hope for.  The reason for that is because the tumor uses the same growth hormone her body uses to grow.  So until she is full grown and stops producing growth hormone the tumor will continue to grow as well. 

We don't scan her legs, as you can't really measure the tumors there so we don't see the point.  Those tumors are tracked by visual assessment only, and we both agreed that we believe her right foot and left heel to be bigger than her appointment 6 months ago.  We believe that they are growing at a rate faster than her body, but there is currently no treatment options.  We'll continue to watch and monitor this growth like we have been for the last 3 years.

The other thing we discussed was the continued pain in Sara's right leg.  It would appear that it doesn't hurt all the time, but only when it is over loaded with sensation.  Sara tells me it hurts when she bumps it, or when I put her sock on that foot.  It would seem that her leg is becoming more sensitive as time passes, but again there really isn't any treatment available that we aren't already doing.  Sara is already on medicine to help manage these over loads of nerve sensations.  Some days it helps more than others, and some days it doesn't help at all.  But it is the best we have for now.

Overall, the appointment was a success.  Her tumor is stable, and we're doing everything we can to manage whatever pain she has.  Her tumor has been stable for over a year, and that is an amazing thing!  Some days I never thought it would stop growing.  I'm so glad I was wrong!

Wishes Really Do Come True!!!

At the end of last year, I received a call from the Kids Wish Network (click the link to view their website) telling me Sara had been nominated to have a wish granted by this non-profit organization.  They grant wishes for kids 3-18 years old that have life-threatening illnesses.  I had to fill out a bunch of forms, so did her doctors, and then they told me that they would be in touch in the coming months to see if they would be able to grant Sara's wish.

This week they called me...they are granting Sara's wish!!!  I cried when she told me that they would be providing Sara with an all expense paid trip to DisneyWorld to see Mickey Mouse.  Sara had to speak directly with the wish coordinator and told her she wanted to see Mickey Mouse, go to the beach, and go swimming.  Of course, she said that they could do all of that. 

There are lots of details to work out, but I do know that we will be going Feb. 2011.  She told me we will be staying in one of the hotels on Disney's property for 4 nights, provided with a rental car, airfare, and some spending money.

Honestly, I'm still in shock!!!  I'm so glad that Sara will get to go and see Mickey again.  She's asked me so many times to go back since we went earlier this year, and it has broken my heart to tell her that I didn't think we would be able to go again.  When I told Sara today that we were going to see Mickey again, she got the biggest smile and gave me the biggest hug and told me I was the best mommy ever!

I'm so grateful that Sara will get this opportunity to have her dreams come true!  Its going to be amazing, I have no doubt!

Sara's Latest MRI

I know, I know!  How dare it take me two days to post what happened when I admitted to sitting in a waiting room while Sara was having a test done.  To those of you who have been anxiously awaiting to hear the results, I'm so sorry for the delay.

With that said, Sara did great during her MRI.  She barely cried at all this time, and didn't fight us at all.  It used to be that when I carried her into the MRI room, she'd be thrashing around and completely hysterical.  This time she was crying, but mostly calm and didn't push the mask away or anything.  Unfortunately, I think she's finally getting used to it.  She went to sleep easily, and woke up just fine.  By the time we left, she was her normal self and you couldn't even tell she'd been sedated just a short time ago.  We won't get the results for a couple weeks; I have to make an appointment to see her oncologist to get them.  I'm hoping to schedule that on Monday, and of course I will be listing it on the right side of the blog under Important Events for those of you who want to know when it is.

She was also supposed to have an EMG, since she has to be sedated for that as well.  An EMG is where they take a tiny needle that has an electric current, and they touch nerves to see what kind of response they get.  That's the super simple version anyway.  We wanted to do it on Sara's legs, especially her right, because she has been complaining about pain for some months now but we're not really sure what that means.  Sara isn't old enough to tell us if its really pain or tingling or what kind of feeling it is, and since the nerves are compromised by all the tumors we have no way to even make an educated guess as to what it might be.  This test will tell us exactly that, and how sensitive she is as well, and then maybe we can find a better medication to help manage whatever it is that Sara refers to as pain. 

The EMG wasn't possible because the scheduler screwed it up.  I have to call her Monday to reschedule, and let's just say I will have a few choice words for her.  Its another trip to the hospital (45 min away), another 12 hours of starving my child, another sedation, and another day off of work I can't afford.  To say the least, I'm not happy!!  I scheduled this 3 months ago to make sure it would all go smooth, and look what happened.  So we'll see when it'll be rescheduled for next week, and of course it will be listed over on the right like all her other appointments. 

So after all that, we still had to head to her follow-up appointment at her urologist.  This was her yearly check after her surgery.  And the news couldn't have been any better!!!!  Sara's kidneys look amazing; the best they've ever looked in the 3 years of her life actually.  Her right kidney (its always been the healthier of the two) is functioning at 100% and is completely normal, and her left isn't far behind and healthy as well.  And it looks like, even with all the infections and opportunities there have been for permanent damage, it seems that she's escaped that for the most part.  This is the best news we could hope for, and it means we don't have to go back for a year!!!  A whole year, can you believe it?!?!?!?

And on a side note, Sara started at a new daycare this week, and she's loving it!  Sara has always loved going to school, so this is a really good thing for her.  She's adjusting well to it, and the kids in the class seem to love her according to her teachers.  It seems a good fit for everybody.

When we get to the oncologist and get the results of her MRI, then I will be posting that as well...could be a couple weeks though.  Not sure when we are going.

Have a great weekend everyone!!!  I know we will!!

Odd Place for a Sanctuary

At this point Sara's had so many tests that I can't keep track any more.  She's been under sedation more times in her 3 short years than probably most of my family combined.  And yet again, I sit in the waiting room at TCH while Sara has her 6 mos MRI scan. 

We scan Sara every 6 mos to track the growth of her tumor in her pelvis; the one that has caused her to have her urosotmy and has the potential to cause huge problems with her kidneys and spine.  If it is growing at the same rate as her body, not getting any bigger in proportion to her body, we call that stable.  If it's growing faster than she is, then it is growing because it is continuing to take up more space which she needs for her kidneys and other organs.  The hope that it will stop growing all together are remote since the tumor uses the same growth hormone to grow that her body uses to grow.

We did the last scan in late January 2010, and her tumor showed it was stable at that time!

I've become a pro at passing the time sitting in these waiting rooms, and the free WiFi is a life saver.  I've read tens of thousands of pages of hundreds of books by now, and no matter what you do your brain is never far from what is going on around you.  Lots of times I'm so tired or overwhelmed that I just sit and watch the people and kids around me.

Some days as I watch I feel down and wonder if those parents know how lucky they are that their child can walk, talk, and looks relatively health.  Do they take for granted that their child can wear shoes, and do simple things like jump and run?  And some days I notice the cases worse than Sara, and I sympathize with those parents that they will never see their child do what "normal" kids do...like even make it to adulthood.  Sometimes it brings me to tears to think about it, but it is a reminder of how blessed I am. 

I'm reminded every time we go to NF clinic that Sara is one of the worst cases they have, but it could still be MUCH worse.  Sara's life is not in danger currently.  She has no tumors near her heart, lungs, or brain.  People live relatively normal lives in wheelchairs, and that she won't be missing out as much as I worry she might.

This place is more than somewhere I bring Sara for appointments and tests; this place is a reminder of all the things that are good in life.  Caring people, loving families, life's ultimate blessings, and much more!  For me this place is a second home, and a place where I can reflect and process what is going on in my life.  This place is my sanctuary; its quiet, I can think, and I know that Sara is safe here and receiving the best care possible.  I know it seems strange to find peace in a hospital of all places, but that is exactly what I have found here in the past...and continue to find here each and every time.

Like Mother, Like Daughter

I was surfing through some old photos over the weekend and came across a very familiar looking photo.  It wasn't familiar because I remembered it being taken, or because it's one of my favorites...its the fact that I have the same photo from two generations without even knowing it.

In the old photos I was looking at I found this photo of my mom and me when I was around 2.  I know the quality isn't great, but its an old photo...and I didn't have a way to scan it so I had to take a pic of the photo with my camera.

Sara and I went and took this last year.  I had totally forgotten the previous picture existed, and there's no way I could have gotten Sara to hold that pose anyway.  But look what happened!  I think its kind of neat, and it makes me see how much Sara really does look like me.

So here we are, two generations with the same photo around the same age.  Its amazing, and kind of cool.  I still don't think Sara looks anything like me now, but I'm starting to wonder if she looks a lot like me when I was that age.  It seems that might be the case.  Like mother, like daughter I guess...or is it like daughter, like mother??

Like a good neighbor...

I got reminded today (again) about how amazing the people in my life are.  It seems that I'm blessed in more ways than I even knew.

My next door neighbor moved into his house just a few months after I moved in to mine.  I've been in my house for over 8 years now, so we've been neighbors a long time.  We go in this cycle where we'll talk often and see how life is treating us, and then we'll have times that we don't talk to each other for a couple months.

In the time we've lived next door to each other he's received a kidney transplant, survived major medical complications, gotten married, and done more work to his house then I think I'll be capable of in a lifetime.  I've had multiple roommates, my family living with me, given birth to Sara, been in and out of my relationship with Curtis, been through all of Sara's medical stuff and discovered her diagnosis, and there's more I'm sure.

We talked a lot about kidney disease and all the complications that can happen when your kidneys are at risk when Sara started having problems with her.  He had just had his transplant and was finally making a turn for the better after being sick a long time.  He gave me hope that no matter what, she would make it through this.  During that time, we spent a lot of time hanging out and having BBQs together and all kinds of things.

Why do I tell you all this?  Because yesterday I ran into him out in front of our houses.  He was asking me how I was doing and if I needed any help with anything since he knew it was just Sara and I now.  I told him I was doing okay, and I couldn't really think of anything.  And he said that if I refused to ask for help, then he'd just give it to me anyway.  Right then and there he offered to mow my lawn for me!!!  A small chore in the big picture, but something that I never get to because I don't want to leave Sara alone in the house for an hour while I do it.  I haven't mowed my lawn in a month....at least.  He said he knew it must be hard to find the time and was happy to do it for me.

So what did I do at 8am this morning, I mowed my lawn before Sara got home.  She spent the night with my mom and step-dad.  He said to me today that I should have let him do it, and I think he's still planning to go around the edges with his trimmer since I didn't do that part today...and haven't yet this year.  I was never good at accepting help, but maybe I need to learn to!

I'm incredibly grateful for his offer to help me!  Its nice to know that I have people I can go to in a pinch and they will help me with whatever.  I have a couple other neighbors that have also offered to help me out if I need anything, all I have to do is ask.  Its the asking part I'm not good at.

I always wanted to live in a neighborhood where I knew all my neighbors, and knew that I could ask them for favors in a pinch.  I never thought of this neighborhood like that, until it was just Sara and I.  Once it was just the two of us, my neighbors have made a point to let me know they're there for me if I need help.  One more blessing I need to remember every day...and how lucky I am in my life!

Something Different!

In the educational community there is a saying that teachers stick to.  When you find something good another teacher is using, beg, borrow, or steal to get it!  And I think that some items in blogging are the same.

Mary, my fellow blogger, posted 5 answers to 5 questions. You can read it here. I thought it was a great idea, so I'm stealing it...and she notes in her blog that she "stole" it from someone else!  And I agree, this is a nice change from the regular "life is good, and this is what we're up to" posts.

1.  What is one thing you miss most from childhood?
I miss living in a neighborhood where everyone knew everybody else.  Mom's took turns watching kids, and people drove super slow because there were always kids playing in the street.  I miss being yelled at by somebody else's dad for doing something dumb, and I miss the safety I felt because I knew everyone around me wanted what was best for me.

2.  Are you still friends with your friends from high school?
No.  I haven't spoken to any of them in quite some time.  About once a year I will run into a friend I had then since some of us have stayed in the same area for the most part, but I have no desire to seek them out and spend time with them.  Most of them have not made good choices since high school, and I just don't want to be around people like that.

3.  Is there a catch phrase, cliche, or word that just drives you bonkers every time you here it? 
At work I have a friend, and his catch phrase is "That's what she said."  Every time he says it, I want to smack him....but it makes me laugh to, so I don't.


4.  What is one thing that symbolizes America....besides "Old Glory"? 
We have a symbol for this country; its the American flag!  There is nothing else!  Our flag is awesome, it shows where we came from with the first 13 original colonies, and shows what we have grown into with our 50 states.  It has the power to lift people up in times of despair and the power to make people cry tears of joy.  Our flag says it all!!

5.  What are your 4th of July weekend plans?   
Tonight my daughter is staying with my mom and step-dad, so I'm going out with some friends.  Tomorrow night I'm bringing all the kids back to my house so my parents can go out, and we'll be camping in the backyard.  And of course, I always end my weekend with an evening with my honey.

So there you have it!  The 5 questions of the day answered.  I hope everyone has a great time celebrating our country's independence.  Be safe and have fun!