First Week At Home

Today marks 1 week since being discharged from the hospital.

Sara is doing well!  She is starting to be awake more, and seems to be trending back to a normal functional level.  Acceptance of her new limitations has started to sink in, and hopefully that will makes things a little smoother.  So far that mixed with the pain has made for a very grumpy and angry little girl.  We've had some real anger issues; whining and crying mostly, but every day gets a little better.

We are still dealing with some pain and medication issues, and still going around the clock.  I'm tired from getting up multiple times at night, but its worth it to know it helps her to rest more comfortably.  There are also some nutrition issues we are dealing with (Sara hasn't been eating very well since surgery).  The last issue we continue to battle is the swelling in her right foot.  I have to watch it very carefully, and use elevation and ice packs throughout the day and night to keep the swelling down.  And then, of course, there is all the issues involved with the cast itself...like learning new ways to changing diapers, wash hair, and changing to different positions often to avoid developing sores on her back.

I haven't even taken her out of the house yet.  Between the weather being so cold here and Sara's discomfort, going out just hasn't seemed like a good idea.  Maneuvering her into the car and the new wheelchair, and dealing with all the issues that might arise, just seems like more than she can handle (and I want to take on) for the moment.  Maybe that's a project to tackle next week!

I'm hoping that by later next week (even if we can't go out), Sara will maybe be up for a play date with a friend or two since I know she has friends who are wanting to come and see her.  Sara has had family come to see her almost every day since being home, and is always very tired after a visit.  Usually a nap is needed afterward, or at least some veg time in front of the TV.  The rest of the time is passed with coloring, video games, and playing with some of the toys that arrived under the tree a couple days ago.  (Santa was thinking this year when he picked out what to bring her.)

I also made Sara's follow-up appt when we hope to cut her cast off.  It's scheduled for Jan. 29th!  Let's hope we can take it off then and move her to a splint instead of keeping the cast on for longer.  It would be a great birthday present for Sara!

2012 Christmas Letter

As most years do, this one has come with its trials and triumphs.  For once our year was not completely consumed by Sara's medical status, as previous years have been. And because of this, we got the opportunity to participate in many more events with CTF and the family than in previous years.  I would like to think that for the most part, we lived a "normal" life this year.

This year started with Sara's 5th birthday.  It wasn't a big event this year, but as this whole year showed, a key person was missing.  This year was filled with events that reminded us of Amy's absence.  It was harder some times than others, but we all still miss her VERY much!

In February, we made what has become an annual trip to Disney.  We went to Disneyland in CA, and enjoyed a long weekend together.  For the first time in I can't remember how long, my dad, sister, myself, Sara, and my nephew were together on a family trip.  We did it for a couple reasons...to restart our relationship as a new family since over the last several years our relationships have been very strained, and to help us to grieve the loss of my step-mother.  It was a difficult trip. but a lot of fun at the same time.  I just had to focus on Sara and Corbin's amazement and excitement!  My dad has already decided that he wants to go to Disney World in 2013, and it sounds like he has quite the idea of what that trip will look like!  Should be a good time!

In July, we were invited to Colorado National Speedway to see the CTF car in its first local race!  We got to go into the pits, meet the driver, and all the local NF Heroes (including Sara) had their names printed on the car as part of the paint job to honor them.  Sara is a huge racing fan (We watch NASCAR each week), so this was a big deal for her!  I hope they come back again next year so that we can see the car in action again!

Another big event over the summer for us, was Sara's new walker!  Sara decided at the end of last school year she wanted to walk "like the other kids in her class".  So to PT we went, and with a new walker Sara grew in leaps and bounds.  After several months, Sara was walking like a champ.  She uses her walker most of the day at school walking to specials, lunch, and recess.  Its amazing to see, especially since doctors told us it wasn't ever going to happen!

Sara started kindergarten this year, and does she love it!  Sara loves her teacher and new friends, and they love her as well.  She continues to be at the head of the class academically, but has struggled some with her fine motor skills.  She has excelled at reading and math, and is always in love with art projects.  We look forward to doing the science fair early in 2013!

Again this year, we attended the Annual Denver NF Walk.  I was on the planning committee this year, and it was a lot of fun...and a lot of work!  It was great to see everyone come out and support CTF and all those affected by NF.  We had a big team again this year, and its so amazing to see everyone come out who loves Sara so very much and supports her through it all.  Sara also received the NF Hero Award this year at the walk, which was a pretty big deal.  They give the award out to one child each year who shows perseverance and helps to spread awareness of NF throughout the community.

In November, Sara got the opportunity to try something new.  My sister has become involved with a horse rescue this year, so we got the opportunity to take Sara riding.  Sara was fearful at first, but warmed up to the big animals.  She started riding with me, but as you can see, got to the point of riding alone with someone walking along side her and someone else leading the horse.  I'm hopeful that once Sara is out of her cast from surgery early next year, that then maybe she will be able to do some therapy riding to regain strength in her lower muscles.

And in December, the biggest event of the year for us....Sara's hip surgery!  It went amazingly well, and Sara showed what little girls are really made of.  Strength, love, resilience, and determination!  She rose to the occasion like she always does, and faced this amazingly scary event with a grace and understanding beyond her years!  She will have the cast until early or mid-February.

Happy holidays to all of our friends and family!  We pray the Lord watches over you now and always. Have a very happy and fulfilling new year!

We're Home!!!

Today we got to come home!  I would have posted sooner, but it was kind of a whirlwind day.  Since there was a lot of things that had to be coordinated for Sara to leave the hospital, it was a parade of people coming in and out of her room starting at about 6am, and lasting until the moment we left at about 1:45pm.  We had to organize a special carseat to fit her cast, special diapers big enough to cover her cast, and of course, a special wheelchair she'll need to accommodate her cast as well.

The carseat was easy, its a loaner from the hospital and we just return it at the appt. when we cut the cast off.  Sara can't wait!  The wheelchair will be delivered tomorrow afternoon some time, and we got some of the diapers from the hospital and the rest will be delivered early next week.

Sara is doing well over all.  I think she's glad to be home, and in her own bed, on her own couch, and just at home period!  We managed to get her hair washed and a sponge bath (she wasn't smelling so good) and learned a lot doing it...like what not to do next time.  But I figure there will be a lot of that in the next couple days as we figure out the best way to do lots of things a new way.

I'm so glad to be home too!  Even though I have to get up several times each night to keep Sara on pain meds around the clock for the next week or so, it will be nice just to be in my own bed.  Hopefully we will both get more rest now that we are at home cause I know we are both exhausted....and the pain meds make her even more sleepy.  No nurses checking in, no vitals every 2 hours, no beeping alarms when Sara's heart rate is too high or her O2 stats drop below 90 for 3 seconds.

I assume for the next several days there will be lots of TV, Wii, games, books, crafts, and most importantly....NAPS!  I've already told Sara if she really wants to have her cast off in 6 weeks instead of 8, she needs to be sleeping lots, eating well, and drinking lots.  Those are the things that will allow her body to heal as quickly as possible.

I can now finally turn my sights to Christmas, and all the wonder it will hold for Sara!  I still have some things to do, but I think I can get it all done.  I have to...Santa never fails!

Thank you again to all of you who have been so supportive over the last few days...and throughout Sara's continued NF journey!  We are forever grateful for your love and support.

Hospital Day 2

Sara had a great night!  She still isn't reporting any intense pain.  She slept as well as you can in a hospital with nurses waking you up every couple hours.

Here are some pics from yesterday and this morning.

Sara in recovery yesterday!

This is Sara's post-op x-ray.  It is her left hip looking down from the sky while she lays on the bed.  If you look close, you can see the break and, of course, the hardware.

This picture is from this morning, and gives you an idea of how major the cast is.  It reaches all the way to her ribs!

Another close up of the cast.

These are just some of the Cheer Cards that you all have sent from the hospital website.  Every time new ones arrive Sara gets a huge smile, and when we read them says thank you to each one of you!  This picture is only about half the ones she's received.  Don't stop sending them!

The doctor came in this morning and said that we should be able to head home tomorrow.  He said we might even have be able to head home late today, but with the mini blizzard that came in overnight he's happy to send us home tomorrow.  Sara is still doing great, and we're hoping to transition her to oral pain meds this afternoon.  We also have to trim the cast a little around her urostomy site.  Its very difficult to change her bag right now because there isn't enough room.

Thank you to everyone who has supported Sara and I through this, and everything else that Sara has been through on her journey with NF!  We wouldn't have made it this far without you!

Sara's Surgical Journey

Hello all!

First off, I want to say thank you for all the love and support that we have received leading up to this major (and possibly life changing) surgery for Sara!  Its already been quite a journey just getting ready.

With that said, I will be posting updates to this post as often as they become available to me.  Sara's surgery is scheduled to start at 7:30am on Dec. 18th, and I have been told it will last approximately 5 hours.


(All times listed below are local (Colorado) time!)

7:57am - I just came out to the waiting room from watching Sara fade off to sleep in the OR.  They use gas to knock her out, and then do all the IVs and pokes after she's asleep.  It took her a while to fall asleep cause she kept trying to take the mask off.  But through it all, she's shown little fear this morning!  She's a trooper!

Sara did great this morning on the way to the hospital.  She was in good spirits, and it even started snowing as we got closer to the hospital.  In pre-op, she continued with her good mood, but was shy with the doctors.  She did answer their questions and was cooperative...for the most part.  She was even still smiling as we walked down the hall to the OR.  She thought mommy and daddy looked pretty funny all dressed up like doctors.  The nurse told me it would be a couple hours before the first update, and then I should expect one every hour after that (give or take).

Lord, please watch over my baby as she goes through this journey.  Guide the hands of her amazing surgeons and staff, and please help her to have as little pain as possible once she wakes up.  Please grant her a quick recovery.  Amen.


9:06am - I just got the first call from the OR.  It took them a while to get all the IVs and other tubes in, so they didn't actually get the surgery started until about 9am.  Let the waiting continue!

10:08am - I just got a call saying that they are almost done!!  All the hardware is in and Sara is stable.  Then nurse said they had a great team that worked really efficiently and they also didn't have to do as much repair as it was thought would be needed.  They are closing right now and will be starting to put the cast on soon.  The nurse said that it could take an hour or so to get the cast on.  Hopefully next time I update it will be to say that she's done and heading to recovery!

11:01am - Sara will be in recovery by noon. She is having her cast put on now. Next time I update will be after we've talked to the doctor and moved Sara out of recovery and into her room upstairs. It will probably be a couple of hours until then!

1:44pm - Sara is upstairs in her room, and doing well.  She's still really out of it and is mostly unresponsive (staring into space) unless the nurse has to mess with her and tries to take her blankets off to look at her.  She did throw up a little bit of pain medication they gave her in post-op when we arrived upstairs, but the nurse thinks that's just because of all the movement of the bed on the way here.  She's been fine since!

When she woke up, the first thing she said was she wanted to move her legs!  My heart just broke for her.  Its going to be a long 8 weeks.  She currently has a nerve block in her leg for pain control.  It should last about 24 hrs.  They also gave her some IV pain meds, so hopefully we can keep her comfortable through the night at least.

I'll update again later tonight after everyone goes home.  Lots of people are here to make sure she's doing well.  And its nice to know all this support is here!  Hopefully I'll get a couple pictures up tonight as well.  And thank you so much to all of you who have already used the link I sent out to send Sara a cheer card from the hospital website.  They were delivered about 15 minutes after we came up here, and they brought the first smile to her face.  Thank you for that!!


You can find more info about Sara's surgery and the remainder of our stay at the hospital by clicking here.

Still Missing Amy!

Today is the one year anniversary of my step-mom's death!

Its been a rough year, and I still miss her so very much!  I wish she was here with us now.  She was always so strong and calm when everyone else was stressed and freaking out.  And to be honest, between the last 2 weeks of illness, and Sara's surgery only 6 days away...I'm freaking out!

She always had a smile on her face and a story to share.  She could brighten any day, no matter how dark.  And through all the pain and suffering she went through in the last couple years of her life, she never let it get her down.  I wish I was half the amazing person she was.

I miss you Amy!  I wish you were still with us!  I wish that Sara had had the chance to know you as I do.  I know we didn't always see eye to eye in many things, but I always valued your opinion (to bad I never told you that when I had the chance).  I know Dad misses you more than anyone!  There is no one else like you, and never will be.  You are a true inspiration to those of us you left behind.  I feel truly honored and blessed that I got to have you in my life.

Please watch over Sara next week!  Keep her safe, be her guardian angel!  I have no doubt that you have been watching over her for the last year.  Thank you!

I love you!  Woof!

Seasonal Sickness

Its been a rough couple weeks at our house!

I came down with whatever horrible virus is going around last week.  And boy, is it a doozy!  I'm on day 9 and just feeling human.  Still have some cough, but the majority of my symptoms have passed, including the 102+ fever I had for 4 days straight.

I did every thing I could to keep Sara from catching it, but with a virus there's only so much you can do.  Unfortunately, Sara started showing signs of catching it this last weekend.  And Monday, the school called to come get her...her temp was 102.

Now its a race to get her better before surgery!  Luckily, it seems that her fever is over and she's on the mend.  She seems to be feeling a little better today.  She's asking to go to school, even though she is still congested.  But I think its a good sign.

Hopefully tomorrow Sara will return to school, and I will finally return to work after being gone for 5 days (right before I'm about to take 3 weeks off for Sara's surgery).  Admittedly, not the best time to be sick and taking time off.

And through it all, my roommate has been trying desperately not to get it...and my boyfriend was the first to have it, so he's been out a lot too recently.  I'm just glad we're at the end of this illness.  Its been ugly, and very stressful with Sara's surgery so close.

Hopefully things will only get better from here!

It's 60 degrees...

...on the last day of Nov. We decided to play outside!!

Sara loves her hand trike!!

Feeling the Weight of What's to Come

Today I woke up with that feeling...

You know the one...completely overwhelmed and feeling like you just can't face what you know is coming.  It didn't help that I had a dream involving Sara's upcoming surgery and I couldn't shake "that" feeling once I was awake.

I look at my list of all the things I have to do, and have coming up, and all the people counting on me, and its scary!  How am I suppose to pull this off?  I know that I have pulled off some amazing things in the past (or so I've been told), but that doesn't guarantee I can do it again.

I just feel like whatever I do will not be enough.  I'm bound to let somebody down or do something that will make the people most important to me disappointed in me.  I don't know how it will happen, or when, but there is no way I can make it all the way through this part of life's obstacle course without tripping at least once and face planting into the dirt.

As the day went on, my feeling got worse.  I had thoughts of the fact that I'm crazy to put my daughter through this surgery.  They're going to cut her!!  My baby!!  And use power tools to saw her leg bone into two pieces!!!  And then more power tools to put a plate and screws into her bone to put it all back together!!  Then sew her muscles and skin like you would a dress!!!  OMG, I'm crazy to do this!!!

And then a littler further into the day, and thank our great Lord, I came back to a reasonable thought pattern.  Some of the credit for that goes to my amazing man!  He's good at distracting me from my stresses and helping me shift my focus....even when he doesn't realize it.  I know, without a doubt, I'm making the right choices for her.  If she is ever to walk consistently, or possibly without any kind of assistance, then this has to be done.

Its been a long time coming, and although she is scared Sara has told me it is what she wants.  I know she's only 5 years olds, and you're thinking there's no way she has a clue about what this really is....but I tell you she does!  We talk about it often, and she knows what is going to happen.  She asks me questions about it daily, asked the doctor questions when we had her pre-op appt., and tells me how she feels about it often.  She is able to tell other people what is going to happen to her, and how long we think it will take for her to be up and moving again.  She knows it will hurt, be a lot of work, and hopefully in the end it will get her the results she wants.

It gives me great strength to know that she is aware...and has acceptance for what will happen!  She is scared, she tells me so....and that means I'm not suppose to be.  But honestly, I'm terrified!  Do I tell her I'm scared?  Will it scare her more to know I'm afraid too?  I tell her that its ok if she's afraid, anyone would be...even grown ups.

Please God, just give me the strength to get Sara through this...hopefully without too many speed bumps or stumbles along the way.  And also, thank you Lord, for the most amazing people you have brought into Sara and my's life that will support us through this big journey.  I feel ever so blessed to be surrounded by those most giving, caring people I've ever been blessed to know...both close and far away.

Pictures!!

Ok, so maybe I'm not good at remembering to post pictures on a schedule. So here's a bunch of random photos from the last two weeks.

Because Sara Said I had to...

Happy Birthday to me (aka Mommy)!!

Thanks peanut!!  Love you Sara!

Picture (not Friday) Sunday!

Oops! Sorry, I forgot!

Picture Friday!

Illness Update

Sara continued to struggle with the infection until Tues.  But is now doing much better!

She was able to attend school yesterday and celebrate Halloween with her classmates.  She even had the energy to do a little trick-or-treating last night, about 6 houses.

The antibiotics are really hard on her tummy, so we are still watching what she eats carefully.  And I continue to push fluids so that I know her body has what it needs to keep her kidneys on the right track to getting better.

Urgent Care Visit

Unfortunately,  I had to take Sara to the urgent care last night.  She'd been throwing up since early Friday morning.  And it wasn't that she was that sick, she had no other symptoms like fever or body ache.  But I just knew something wasn't quite right and I should get her checked out.

I was mostly worried that with her dehydration, her kidneys might be having some trouble.  So really I took her in to get her hydrated and check her kidney function.  And all her tests were normal, until the last one which showed a UTI.  Ugh, no!!!!

Most of you know Sara's history with UTIs and kidney infection.  But for those that don't, a quick update.  Almost every time Sara has had one, she has ended up being admitted to the hospital.  The problem stems from all the infections she had when she was younger, and because of it she has some antibiotic resistance.  And Sara only seems to grow the meanest, nastiest bugs out there.  Not good!  Because of the two things combined, only once have we ever been successful in treating Sara's infections with prescription antibiotics at home.

So with this news, the doctor and I discussed it and decided to at least try to treat it at home first.  She prescribed a super strength medication and I'm praying that it will do the job.  I think it has a chance because we caught this bug so early, even before Sara showed any signs of fever.  Not sure if the vomiting is related to the infection or something else; could be either.

So now we wait.  If the drug isn't going to be able to kill of this infection, it will be likely that Sara will be in the hospital by Monday.  Let's just hope that doesn't happen.  But I promise you, if it does, I will be posting to let you all know.

Here's my little sicky yesterday!

Learning to Sew 101

So I have no idea why either of us thought it was a good idea, but Kim and I decided to attempt to make Sara's costume this year.  Of course, Sara wanted to be something that I couldn't find anywhere (not even online) so there really wasn't any other choice.

Kim has a sewing machine, but had only used it to fix already made things like jeans and shirts.  To follow a pattern from scratch was a whole new adventure for both of us.  And let me tell you, we learned A LOT!!!  And as you would suspect, we had to modify it as we went to accommodate Sara's right leg and other minimal issues.

So here it is!!  All of our work, stress, and victory all in some pictures!

The table when we started!

Cutting out the pattern!

The bad dog Tank helping us out!

Cutting out the fabric pieces!

Sara helping us pin the pattern!

All our cutout pieces!

OMG!  We actually sewed two pieces together!

We made muffins mittens!

And then we had ears!

And the tail (modified)!

Kimmy sewing the hood!

The never ending mess!

Who knew we could actually sew a zipper!

One of many casualties!

Working on the shoe covers of the jumpsuit!

One shoe cover (inside out)!

Just needs some finishing touches!

I think we made it a little big!

Check ear position before sewing them on!

Lambie's bow!

Completed jumpsuit with tutu!

Woot!  We did it!

Hood details!

It took us about 20 hrs spread out over a Saturday, and 5 week nights!  It was definitely a challenge, but we rose to the occasion and conquered it.  And we did it all with love for my peanut!  And we just hit our deadline, completing it just 10.5 hrs before it needed to be worn to Boo at the Zoo!

And here is what Sara asked to be, for those of you who don't know, and in case you couldn't tell.  Lambie from Doc McStuffins (a show on Disney Jr.)!