Muffins, Muffins and More Muffins!

So I love to bake, but never do it.  Sara and I make cookies once in a while, but overall I've never really expanded my horizons past the 4 favorite family recipes I learned from Mom.

But living in the country, and having a much bigger kitchen with the most awesome gas stove ever, has moved me to bake more.  I started my adventure in baking this last weekend....making 75 mini muffins in two flavors.  Sara loves mini muffins, and up until now I bought them pre-made in packs at the store.  But no longer!!  From now on I'm determined to make our meals and snacks healthier and cheaper, both good things.  And when you love to bake, it just takes time.  Plus, its a great way to spend quality time with Sara, while it helps her to learn math and other great skills she'll need later in life!!

The first muffin I made was called a Toddler Muffin, which is based on how to hide nutritious things in muffins...always good!  So I made them with bananas, carrots, and squash...then added oat bran and whole wheat flour instead of the usual white.  They came out delicious, and Sara (along with my niece and nephews) scarfed down half of them on the first day.  So much for making snack packs for the freezer and them lasting for a month's worth of breakfasts.  LOL!

The second muffin I made was a Buttermilk Spice Walnut.  It was also delicious, and was substituted with whole wheat flour and lower sugar to help nutrition values.  It also received rave reviews from everyone, and the adults ate them up like the kids ate the others.  So again, so much for a second month's worth of breakfasts.  But that's okay.  It was tons of fun baking and experimenting with healthier choices, and I have new ideas for next time...which will probably be this weekend since the muffins are almost gone already.

Banana, Carrot, Squash Muffins

My snack packs all ready to go!

Since this was such a hit, we decided that it would be great to see if we can avoid buying pre-baked products any more and just let me make our bread and everything.  I've never made bread before, so this is a new challenge and I'm really excited about it.  Its cheaper and healthier to make it ourselves, so we're going to give it a try.

I'd love to try lots of new recipes for muffins, bread, and other baked goodness.  If you have something you think I should try, send me a comment!

I Miss Him!

Monday was a very sad day in my life!  My buddy of 11 years left this world for the next.  I take comfort in the fact that he is no longer suffering, and that he will not be alone on his next journey.  I believe he will be welcomed and comforted by my stepmother (who passed away 2 years ago).  She was a lover of all animals, especially dogs, and I know she will take good care of him.

Our vet believed that Tank had a brain tumor, or suffered from a recent stroke.  Either way, his health and quality of life was quickly declining.  Since there was no treatment options for either case, the only humane thing was to let him go.  It was very difficult, but it was best for him.

I got Tank as an 8 week old puppy, so its hard to imagine life without him.  He was a wonderful dog, and I loved him so very much! 

R.I.P. Little Dog!

2013 Denver NF Walk

The Denver NF Walk has come and gone again this year!  I think our planning committee did a great job.  As always we had new things we tried that worked, and others that didn't, and are full of ideas for next year already.  We raised a ton of money for NF research and clinics this year, and I would call that a major success!!  I'm so honored to be part of the NF community here.  Its like being part of one really big family!

This year Sara wasn't able to be at the walk, but our team turned out anyway to support her and show her how much she's loved...even when she isn't able to be with us.

We love you Sara!!!

Sara's Striders (minus Sara) at the 2013 Denver NF Walk!

Surgery!

Today Sara completed the last step of her hip surgery from Dec.  She went back to the operating room to remove the hardware holding her bone together now that its all healed up. 

As always, Sara did great!! The doctor said there were no complications. He put the pieces he took out in a jar for Sara to bring home. Pretty cool!!

Recovery was pretty smooth and she was discharged today. This evening she was already up and moving playing with Perry (her new kitten) and back to eating just fine. 

One more chapter in Sara's medical saga completed.  I wonder what will be next. 

Posted from my iPhone. 

New Arrival!!

This weekend we got Sara a new pet!!  It was after much talking that it was decided a kitten was the way to go. 

As luck would have it, this little guy just happened to need a home. He's 6 wks old (we think), and can't weigh more than 4 oz.  He's pretty calm, and loves to snuggle. He purrs louder than some race cars I've heard. 

Sara named him Perry the Catapus. As some of you guessed I'm sure, he is named after Perry the Platypus from the TV show Phineas and Ferb. We just call him Perry. 

Here are some pics of the new bundle of joy cuddling with Sara after coming home from surgery. 

Posted from my iPhone. 

2013 Denver NF Walk

Its time again to get our feet moving and raise money to end NF!!

Our family will again be participating in the Denver NF Walk on Sept. 8th, 2013.  Our team, Sara's Striders, is hoping to raise $2,500 this year, the most we will have ever raised.  We're just shy of half way right now, with only 73 days left till the walk!

I am also on the planning committee like last year, and its great to be involved and helping all of those people with NF so much more than just walking can do.  Its a lot of work, but we have some really fun and amazing people on the committee.

Please take some time to check out the event!  I have posted a link below.  And if you are up for it, come walk with us.  Join our team and spend an afternoon helping others!  And if you can't walk, support our team with a small donation.  Every dollar counts!  Your dollar could be the one that finally finds a cure for NF, or at least some kind of decent treatment option (which we don't have now)!

Click here to see Sara's fund raising page!

Thank you to everyone who supports Sara every year in the NF walk, and all year through.  Sara's journey with NF wouldn't be the same without you!  And if you have any questions, let me know!

Medical Update

Today Sara had her annual MRI and oncology visit.  She was moved into the "once a year" category a couple visits ago since her tumor growth had slowed almost to a complete stop.

And I am thrilled to report that Sara's status remains the same.  Her tumor is stable!!!!  Thank you Lord!

We also saw Sara's orthopedist for her last follow up from her hip surgery in Dec.  Her hip is completely healed and the surgery was a total success.  The stress fracture in her right leg is also completely healed, also great news!  With this news I was able to schedule the last step of this whole thing, which is the removal of the hardware they put in back in Dec.  It has to be removed or eventually it will keep Sara's leg from being able to grow longer.

We will be removing the hardware in late July.  Its a simple outpatient procedure.  Sara shouldn't have much pain at all, just some at the incision site for a couple of days.  No real stitches or big things involved.

So that's it!  I'm happy to be thanking God for his amazing blessing that Sara is doing well.  We got the best possible news we could have hoped to receive today!

We've Moved!

For the last 8 weeks or so, Sara and I have been packing our things and getting ready to move.  Last weekend the time finally came. 

We bought a new house about 30 min north of where we were living.  Its in a small rural town (about 3,500 people).  Its a close knit community, and I'm excited to be able to raise Sara in such a wonderful caring environment.  We have some wonderful and kind neighbors, who have all been very informative as we move into a slower paced lifestyle.

As for the house itself, its a ranch with a walkout basement.  Perfect for Sara with her accessibility requirements.  It has wider doorways, bigger rooms, and overall is just very well fitted to make sure Sara has access to every room and can be as independent as possible.  It has lots of room; so no matter what equipment Sara might need in the future, we will have the room to make it happen.

The house sits on a 10 acre lot on a dirt road.  There's very little traffic, and as you can imagine, lots of room to move around and play.  I'm working with my dad and boyfriend to find a good way for Sara to get around the property, like a small ATV or some other motorized vehicle that she can drive by herself.  Sara loves being outside, and is always excited to crawl up on the tractor to help mow the grass or just drive around.

Sara has developed a new love for mowing!

Besides the house, and a yard the size of a football field, we also have several outbuildings and a huge field.  We have a barn, chicken coop, tool/garden shed, loafing shed, pig pen, and riding arena.   Most of the outbuildings are in very rough shape, and need some serious love.  We are hopeful to get to some of those projects this summer, and that will allow us the ability to have animals next spring maybe.  We're planning to start out small with a few chickens....maybe a goat.  And, of course, my boyfriend is looking forward to having the room to have another dog.  My guess is that will be fairly soon.  Eventually, like on the 5 year plan, we hope to have horses.

I have to admit that what I love most is probably the fact that we still don't have TV.  And I can honestly say, I don't miss it.  We spend so much more time as a family, even when we're working, and its awesome!  Instead of sitting in front of a movie before/after dinner, we plant flowers or water the ones we already planted.  We unpack and organize, we've painted rooms, we do dishes and cook as a family. All the chores go faster and are much more fun when we all do them together.

And the view from our deck isn't half bad either.  We eat out there most nights watching the birds and animals in the neighboring fields.  And our view of the mountains is beautiful!  I'm so excited to start a new chapter of our lives here.  I lived in my old house for 11 years, and had a lot of memories there.  And when I left, it was a little sad.  But my excitement for this new house far exceeds the sadness to leave the old one.  I am very hopeful (and planning) that this is the last place I will ever live in this life time...but God is the only one who knows for sure.

Our new house!

May is NF Awareness Month!!

Yup, the title says it all.  Here's some ideas if you want to help your community know what NF is and what we can do to help stop it from invading (and maybe destroying) the lives of millions around the world!

And its as easy as wearing blue and green, NF Awareness Month colors, on May 17th which is World NF Day!!

The information below is straight off the Children's Tumor Foundation website. It's a list of some very simple things you can do to make everyone you know more aware!

What You Can Do To Support NF Awareness Month:

Participate in the Children's Tumor Foundation's "Picture a World Without NF" Neurofibromatosis Awareness Month Photo Contest. During the Month of May:
Take a photo with any CTF or NF logo or swag. Bring it to a famous landmark in your neighborhood. Make a funny face. Pose with your friends, family, and neighbors. Express yourself and show the world that no matter where you are, who you are with, or what you are doing, you're fighting for a world without NF.

Submit as many photos as you like. We'll regularly post the best ones to the CTF Facebook page. The best photo among all those submitted will win a prize at the end of the month.
Please send your photo to Sarah Rosenberg at srosenberg@ctf.org with your name, where you live, a sentence on where the photo was taken, and a few words regarding what your picture says about your fight to end NF.

What you can do online:
• Change your social media profile pictures to a Children's Tumor Foundation NF Awareness Month graphic, and encourage your friends and family to do so as well. The graphics can be downloaded from CTF's Facebook page.

• Share links to information about NF or NF Hero stories on Facebook, Twitter (using #EndNF), Google+, etc.

• Join the NF Registry (www.nfregistry.org) and encourage others in the NF community to do so as well via email and social media.

What you can do in your community:
• Participate in or volunteer at an NF Walk, NF Endurance, or other community event organized by the Children's Tumor Foundation or members of the NF community. Please go to www.ctf.org/calendar to find opportunities in your area.

• Create a fundraiser to benefit NF research. For suggestions, please visit www.ctf.org/fundraisingideas.

• Put the "About NF" flyer up in your community (in your workplace, at the public library, in coffee shops, on civic center bulletin boards, in grocery stores, etc.) , and pass them out to friends and coworkers. The flyer is available for download at www.ctf.org/nfawareness.

What you can do on a daily basis:
• Wear the Children's Tumor Foundation's NF awareness wristband all month. Wristbands can be obtained by emailing Rosa Amelia Perez at rperez@ctf.org. The price for wristbands is:
        1 = free
      10 = $12.00
      20 = $23.00
  Wristbands are available in youth and adult sizes, so please make sure to indicate size when ordering.

• Wear the Children's Tumor Foundation's signature blue t-shirt when you are running errands, working out, participating in neighborhood events (block parties, picnics, etc.), traveling, jogging, bike riding, etc. If you do not yet have a blue CTF t-shirt, they can be obtained by emailing Rosa Amelia Perez at rperez@ctf.org and sending $12.00 to the Children's Tumor Foundation. Please mail checks, with "CTF T-Shirt NF Awareness Month" in the memo line, to :

     Children's Tumor Foundation
     95 Pine Street
     16th Floor
     New York, NY 10005

     If you would prefer to pay by credit card, please call Rosa Amelia Perez with that informantion at 646-738-8547.

     When ordering, please indicate your shipping address and the size you would like. The t-shirts are available in youth sizes (S, M, L) and adult sizes (S, M, L, XL, XXL).

Easter Fun

Easter was pretty casual this year since everyone has so much going on.  So casual in fact, that I asked everyone to bring something (which I never do) so that dinner was just that much easier.  I made dessert, did the ham, and made the veggie...but everything else was brought by someone, and it was nice to have just a little less to do.

The weather was beautiful, almost 70, so we enjoyed some outside time and then dinner.

Take a look...

Hope you all had a happy Easter!

And its out....

Sara's tooth fell out while at daycare on Thursday! 

The tooth fairy brought her a nice little note and a dollar for this tiniest and most precious of teeth.

That didn't take long!  And the one right next to it is just barely starting to wiggle.  It would appear the tooth fairy will be at our house again soon!

A New First!

I am happy to report, that after Sara's been asking me for months when it will happen, she finally has her first loose tooth!

Sara is super excited about it, but at the same time nervous about the actual falling out part. 

We've been talking a lot about the tooth fairy for 3 days now, and she goes back and forth about being excited and scared.  I don't remember being scared when my first tooth came out, but each kid is different!

So that's it, nothing much else new going on.  Same old school and PT routine for us!

Surgical Follow-up

This post comes a little late, but better late then never right?!?

This past Tuesday Sara had her 1 month follow-up appt from her hip surgery.  And I'm happy to report, Sara's hip looks awesome!!!  Its completely healed and staying in the socket through out her range of movement!  Yea!!

Now for the news I didn't expect to hear at this appt....Sara has a stress fracture in her lower right leg!

Yes, you read it correctly.  Sara has a broken leg (technically) on the right side.  We discovered this because Sara's lower leg on that side is still somewhat swollen, so the doctor wanted to check it with x-ray.  And sure enough, his suspicions turned out to be correct.

The fracture is very small, and already starting to heal on its own.  It has formed a "ball of calcium" around the fracture to stablize it while it heals.  Its the body's way of making its own cast, and that's why her leg still looks swollen...because she has this large "ball" in her leg. 

The doctor said that the fracture is several weeks old and believes it either happened during surgery when they flipped her because her bones in that leg are so thin and fragile.  Or it could have happened because of the swelling inside the cast could have put pressure on the bone and snapped it that way.  There's no way to know exactly when or how it happened.

The treatment plan??  To do nothing.  Anything he would do at this point would probably just make the situation worse.  So we will let the body heal it on its own, which will take several months.  I have to take her back for another follow-up in 3 months so we can x-ray the break again and make sure the body is still healing!

But good news over all!  Her new hip is looking great, PT is going fantastic, Sara is already up and walking some, and the fracture in her right leg is healing!

Great News, No More Cast!!

Sara's appt was perfect!!!  Her hip x-rays looked amazing and we were able to remove her cast today!

Sara says her leg is sore, but that's not unexpected considering she hasn't used it in 6 weeks.  But despite her discomfort, she is a determined little girl and was up crawling tonight.  She is slower than water running up hill, and her balance is pretty bad considering she's on all fours, but its a start....and for only 4 hrs out of the cast, its great!!

Sara will be home from school one more day, tomorrow, so that she can get her bearings when it comes to her mobility.  I want her to have some time to figure out her limitations before being in a classroom with her peers, who can be less than graceful at times like all kids that age.

Sara's birthday wish this year was to get her cast off and get back to school.  Well, thanks to today she's halfway there.  And I think she'll return to school Thur, on her birthday, just in time to celebrate with her peers.  I know she's super excited to get back there!

Here is the picture of her x-rays before and after!  I don't think I need to tell you which is which.

One more chapter completed, and one more challenge surpassed!  On to the next mountain side....

Hurrying to the Hospital...Again!

Today started with an early trip to the hospital set up by Sara's pediatrician.  We saw him late last night about Sara's swollen foot and shin, and he was so concerned he called over to the hospital and they told us to come in first thing today.

Sara has continued to have swelling issues with her right foot and lower leg since we modified the cast last week, but since coming back from her dad's earlier in the week, I just wasn't able to get the swelling under control again.

So off we went to be squeezed in early this morning, and we ended up cutting the cast some more.  It was debated if it was better to cut it above the knee, or take off the entire right leg section.  It was decided that taking off the entire right leg was better because Sara's swelling is actually fluid retention because of her lack of a lymphatic system in that leg and foot.  Damn tumors!  It was believed if we cut just above the knee, in another few days we'd be back again because the fluid is just going to continue taking what room we give it.  

So out came the "evil" saw again, and Sara was less than thrilled! But she was a trooper, not even crying once.  She was super helpful, and was really happy when we were done.  Now Sara can move her right leg around and hopefully that movement will help get that fluid back to moving again.  And since we cut it all the way up to her hip, let's hope that will be the last time until we just take the entire thing off.

Here are some of the pics from our exciting morning!

Sara's huge foot that caused us another unplanned trip to the hospital.

Sara being brave while the cast tech started cutting.

More being brave, and when we were so close to her butt.

Trimming the edges so it won't poke or cut her.

Sara's new look!

Sara was really upset when we had to cut off Grandma's angel. , so the tech was kind enough to cut it out and tape it so she could keep it.

The discard pieces!

I think this is really going to work!  It was nice to be able to wash her leg when we got home too, but oh the dead skin!  Its flaking off EVERYWHERE!!!  Ewwww!!!

And Sara is really excited to have her leg and foot back!  She's already trying to figure out how to move around on her own now, and I doubt it will take very long.  I'm sure that's the next thing I'll be blogging about in regards to this whole part of Sara's NF adventure.

Week 3

Today marks the third week since Sara's surgery!

Sara is doing great!  She has no pain, and life in a half body cast is as good as you would expect it to be.  We've been able to get a good routine going for the simple things in life like, washing hair, brushing hair, brushing teeth, sleeping, and all the routine style things we all take for granted each day.

The hardest part for me is that Sara needs my undivided attention, more than I had assumed she would. Its not surprising at all since she can't walk to get anything herself, or even sit up or switch positions on her own.  Its been really hard to get even the simplest of things done, like laundry, even though I'm home all day.  You add that with no break for either of us because Sara couldn't travel for the last 2 weeks we've been home, and it makes for some really stressful (cry my eyes out) moments.  Don't get me wrong, I'm not complaining! I'd do it again if I had to and for however long my baby needed me to.  But its nice to be back to work and at the "beck and call" of someone else.  LOL!


Yesterday we headed over to Sara's school to meet with her care team.  We went over everything Sara will need through out the day, care and supply wise.  We needed to get a plan in place, and then, of course, it had to be written up and signed/approved by all parties.

Sara is very excited to get back to school!  I know she's missed it, and all her friends.  And I know they've all been worried about her because they've called and sent notes over the last couple weeks.

Of course, returning to school means my new found routine is now old hat and I have to start again.  Ah, worse things could happen!  Life is ever changing, and Sara's faster than most.  Its just part of the deal with you have a special needs child.  Things change often, and there is no such thing as status quo.

If Sara is able to get her cast off at her follow-up, and the docs believe its very possible, then we've made it halfway!  And I'm sure we've already survived the hard part...the pain, the swelling, the hospital, the adapting.  Now we just chug along until the 29th arrives and see what happens.  Cross your fingers!  Sara's birthday is just two days after that, and since she got a new hip for Christmas it would seem appropriate that she gets her cast off for her birthday.  Let's hope that's the case!  Probably be the best birthday present she could ask for this year!

The Rules of Staring

Finally this weekend I was able to get Sara out of the house!  We didn't go anywhere exciting by most people's standards, but for us it was awesome!  We went to the store and did some grocery shopping, and then drove through the bank drive-up.

Sara was so excited to be out in the sun.  It was pretty cold out, but she still rolled her window down a little and enjoyed the fresh air and breeze (until she got cold).  I was excited too.  Its hard being stuck at home all day every day, never able to leave.  I don't know how people do it!

Of course, there were rough moments since it was our first outing in the cast, but overall it went well and we had a good time.

And like all of us with children who's special needs show on the outside, there are the looks.  And it was particularly bad this time.  Maybe I'm more sensitive because I know she's different, and I'm still getting used to it to.  I don't know, but man, people LOVE to stare!

My niece was with us because she'd come for a sleepover the night before!  The girls had a great time, and it was a good distraction for Sara.  Since I needed to push the cart, my niece pushed Sara around in her chair, and did an excellent job.  But as we are standing in the checkout line, she says to me that this woman won't stop staring at her.  And in my casual, not at all trying to hide what I'm saying voice, I tell her that some people just have no manners and insist on staring at anyone who was different.  And that the woman was staring at Sara, not her.

Sara is used to being stared at, and handles it quite well for the most part.  But my niece, not so much.  Typically family get together time is done at somebody's home, so it isn't something she's used to.  She replied she didn't like it and didn't think it was very nice.  I know the woman heard all this because she gave me this nasty look like I was calling her something horrible.  I would have had choice words for her had my niece and daughter not been present.

There is subtle differences in the looks people have when they're staring, and when you've been stared at enough you can tell what they're thinking.  Some people stare with true curiosity about what's going on with Sara, others (most of them) just stare with pity assuming her life is awful, but this woman stared with that look of how dare I bring a "defective child" into the world.  And because I did, I'm obviously a horrible person.

What gives her the right to judge my daughter, and the value of her life?!?  She knows nothing about us, who we are, and what we've been through to get here.  And honestly, I feel pity for her.  It must be awful to live with a belief system that leads you to think that some people are better than others.  I'll be the first to admit that I don't agree or like the way some people on this planet choose to live, but that's not for me to judge.  If it makes them happy (and they aren't hurting anyone else to do it), then so be it.  Just don't tell me about it or try to engage me in it.

I know its hard not to stare at something you're not used to.  I still catch myself doing it from time to time.  Its human nature!  But if you're going to stare, than be prepared for what might happen next.  You can't expect to stare at someone and there be no consequences, good or bad.  Like everything else in life, there are consequences for the choices we make, and sometimes they aren't at all what we want.

Unexpected Hospital Visit

Well, yesterday Sara and I ended up at the hospital because of a complication she's been having with her cast.

Since surgery Sara's right foot (the side we didn't fix) has been swelling considerably, to the point Sara complains about pain.  We knew that this foot would have some swelling issues because with all the tumors she has on that side she has basically no lymphatic system.  And since she isn't up right and walking or moving around to get the muscles to do the work, it just swells.

The real problem was that it would begin to swell too much and cause pain after only 10 or 15 mins of sitting up.  So since we've come home from the hospital, Sara's pretty much only been able to lie down 24/7.

Yesterday I called the surgeon's office about something else, and the nurse asked about how the swelling was going.  I talked to her about it a while back a couple days after we'd been home.  I told her it continued to be a huge problem, and she said that it should have resolved itself by now and to bring her in right away.  So off we went to the hospital.

We saw the PA, and he was great!  We talked out the issue quickly, and came up with a solution.  We cut part of the cast out to make more room, and then placed the cut piece back in loosely and keep it all together with an ace bandage.  It works great!  I can loosen it when her foot is swelling if I need to, and now Sara can finally leave the house.  We can go to the store, for a walk, and now Sara can finally travel to her dad's.  She hasn't seen him since being discharged because he lives too far away for her to travel to since she has to sit up in the carseat.

We cut the cast from her foot to mid-shin to relieve the swelling issues.

Happy New Year!

Welcome to 2013!  Hopefully it is a year full of love, laughter, joy, and happiness!

Sara and I would like to wish you a very happy new year, and we hope that it only brings you all the best life has to offer!