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.