Halloween Fun!

Its only Saturday of this weekend, and already Sara's candy bag is full!  She had 2 parties (yes, two!) at school and daycare yesterday.  I walked in to pick her up from daycare with 2 cupcakes on her plate.  Oh, all that lovely sugar!!  Let's just say, it made our evening very difficult.

Look at all that sugar!  Makes my teeth hurt just looking at it!

Then today we went to Boo at the Zoo!  We do this every year, and this year was no different.  It was a great time, and super busy as always.  It didn't take us as long this year to get around the loop, and I wonder if it was because it was just Sara this year (instead of her plus my niece and nephew) or if it was because this is the first Halloween she's had her chair and people pretty much just stayed out of her way.  Either way, it was a great day.  We weren't in a hurry, so the crowds didn't bother us any.  And of course, I took pics to share!

This bird really liked Sara!  Who knows why, but it kept pecking the window.

The river otters where out swimming for once, so that was nice to see.

Dad and Sara watching for the sea lion to swim by.

Sara's got this Trick-or-Treating thing down!

Of course, we rode the carousel!

Here we are in front of the monkey cage.  You can barely see him at the top of the picture.

Here we are at the end, a little tired and hot!  It was probably 70 out!

So there you have it!  Our Halloween adventures.  Sara will be going with her dad for the official day of Halloween, and Sara is really looking forward to it.  I hope they have a great time, whatever they do together.

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.