Saturday, May 29, 2010

Sara's Graduation!

Sara graduated from her first pre-school class yesterday!  She will have two more pre-school graduations before she enters Kindergarten in 2012.  (I know; that's a scary thought!)

It was a cute little ceremony.  The kids sang their ABC's and a song about the days of the week.  It was really informal, but everyone had a good time.  After each one got their diploma, then there was snacks and mingling.  This was all followed up by a fun day outside for the kids and their families.  There was face painting, water tables, treasure hunts in the sand box, snow cones, balloons, sidewalk chalk, and bunches of other fun activities.

Here are some of the pics I took of the kids singing.  There's Sara right in the middle, and the little boy on the right in the blue shirt is the "boyfriend" I mentioned many posts back.

Here is my baby with her diploma!  It says, "May you touch fireflies and stars, dance with fairies and talk to the man in the moon.  May you grow up with love and gracious hearts and people who care.  Welcome to the world, graduate, its been waiting for you."

And here is Sara with her teachers.  They both told me how much they will miss her not being in their class next year.  I think Sara will miss them too.  They've had an amazing impact on her in these few short months!

It was a great time, and yes I got a little teary eyed.  My baby is growing up so fast!  Soon I'll be sending her off to college, and to face the real world.  I know that it will be here light years before I'm ready...her first day of school was!

Thursday, May 27, 2010

Memories of a year ago...

On this day, May 27th, of last year I was sitting in the surgery waiting room at The Children's Hospital while Sara was having her urostomy surgery.  This is the story of that day (as I remember it).  And this is a long post, so consider yourself warned!

This story really starts a few days before.  Sara had been in the hospital for 2 weeks, and the infection was barely being managed because the bug was resistant to almost everything we tried.  When her urologist told me that he thought it was time to take drastic measures, and then started talking about this surgery, I just started crying.  It was terrifying to think of sending my baby under the knife for something as life changing as this.  I knew it was the right choice, but it was a very difficult one.

Sara was released from the hospital on Friday for Memorial Day weekend, and I was told to bring her back on Tuesday.  Sara wasn't allowed to eat starting Sunday, and it was difficult to eat knowing she couldn't.  My aunt flew in from Ohio to help support Sara and I through this ordeal.  She came to be at the hospital with us 24 hours a day, run out for food, sit with Sara while I showered or if I just needed a break.  She was amazing, and I know that it was hard for her to watch Sara go through this event.

I was so stressed about admitting Sara to the hospital on the next day, that Monday night I started getting sick.  I ended up getting so sick and so dehydrated that I ended up in the ER until 4am.  My vomiting was so bad the doctors were worried I was having an appendicitis, and when they told me that I might have to have surgery I told them that wasn't about to happen because Sara was being admitted the next day.  Good thing that wasn't the case, but the doctor was not happy with me when I told him I wasn't having surgery even if it was.

After getting home from the ER, I caught about 3 hours of sleep before I had to get up and get ready to take Sara to be checked in.  I still wasn't feeling good at all, and my mom tried to convince me to stay home and meet them later, but I didn't see that as an option.

After getting Sara in her room on the 6th floor (surgical recovery), we then took her to the procedure room and put in an IV and a feeding tube in her nose.  The reason we had to be there the day before was for a bowel prep in case her doctor needed part of her bowel for the construction of her stoma, so we used the feeding tube to put cleansing medicine into her because she had to drink a lot of it and we knew she wouldn't.  Watching them jam that tube up her nose was WAY worse than any IV they ever put in, and it made everyone in the room (myself, my mom, and my aunt) cry.  It was awful, and I hope I never have to do that to her again.

Once all that was done, we just waited out the rest of the afternoon while the medicine did its job.  I didn't sleep well that night, as you can imagine.  And when I woke up the next morning after a couple hours of sleep, I realized I had an infected wisdom tooth.  I'm so glad that my family knows lots of medical people cause my dad was able to bring me antibiotics to treat it without me having to leave the hospital.  Once my dad, mom, best friend, aunt, and sister were there, we took Sara down to the 2nd floor where she would actually be having her surgery.  They put her in the largest pre-surgical suite they had; they knew Sara was what they called a Frequent Flier, and there would be a lot of people who wanted to see her before a surgery this important.  And that room was packed; if I remember right the room had Sara in her hospital bed, me, my mom, my dad, my aunt, two of my good friends, my sister, Curtis, and the three doctors.  And after signing the form, they took her down the hall and I knew we were in for a 4 hour wait.

And waiting was the worst part.  I spent the whole time trying not to throw up.  All of our family and friends took up about 1/4 of the waiting room, and we added to our ranks once there.  Everyone was amazing at trying there best to keep me distracted.  They brought cards, books, board games, and loads of other things to pass the time.  The nurse called out from the surgery room every hour to my cell phone to give us an update.  I didn't eat or drink the whole time, and refused to leave the waiting room even though many of my companions tried to get me to go up to Sara's room and take a nap.

And of course, making myself sick with so much stress was not needed.  Sara came out of surgery with flying colors.  She did super well and they didn't have to take any of her bowel for the reconstruction, which meant her recovery would be that much faster.  She was still very groggy and barely awake when we took her back up to the 6th floor, but only 2 people could be in the post op area, and neither Curtis nor I was willing to give up our time there for anyone else to come in.  Once we got her up to the 6th floor, everyone was able to come in and see her.  She slept most of the rest of the day, and most of the night.  She was pretty sedated with pain medication, so there wasn't much going on.

Sara spent 3 additional days in the hospital recovering.  This was much shorter than her doctors expected (they were thinking more like 5 days), and she was discharged the following Saturday.  I had to watch a video about how to care for her new urostomy and stoma before they would let us leave, and I remember thinking that I couldn't do this.  How was I ever going to be able to change this bag and care for this new "thing" on my daughter's abdomen?  And what was Sara going to say to me when she was old enough to understand what I had done to her and that it was permanent? 

I remember that day like it was yesterday, and I don't think I'll ever forget it.  It was one of the most stressful days of my life!!  I'm grateful that we did it, and had I known she would have been this healthy I would have agreed to it sooner.  But like her doctor told me afterward, if he'd had a crystal ball he would have done it sooner too, but it was a drastic step and we weren't sure it was going to work.  He then told me that he'd never done that procedure on any child less than 6 years old (Sara was 2 at the time), which was another reason he hadn't wanted to do it so soon!  I'm glad he waited until the surgery was over and she was all healed up before letting that one out of the bag.

Since Sara's surgery she has done amazing!  She's had no infections until last week, which is much better than being hospitalized every month.  She learned to stand and walk with her walker; she's received her wheelchair and learned to get around in it on her own.  Sara understands that her stoma is where she's pees from, and sometimes calls it her pee-pee instead of her stoma.  She an tell you how to change her bag, although she can't do it by herself yet.  She knows she has to be careful not to rip the bag, and she helps me to drain it when it needs it.  It took a couple of weeks to get used to caring for her new stoma, but now it is a normal part of our routine.  I don't stress out when it leaks, or freak out when I don't cut the circle on the bag exactly right.

We've both come a long way from this day last year!  We've grown and learned things I never thought we could.  We've done amazing things, taken amazing trips, and experienced life to it's fullest.  Some of those things we never would have been able to do because Sara would have been too sick.  This surgery gave her a new lease on life, and we both plan to take advantage of that and see all that life can show us!

Wednesday, May 26, 2010

Another school first!

Here it is...Sara's very first school photo!  She looks so cute, and I love that smile.

Sara has been doing amazing ever since she started attending pre-school in February.  She has lots of new friends; her teachers report that she is quite a popular kid.  She has learned to transfer in and out of her wheelchair all by herself, and in general her strength is increasing faster than I thought possible.

School has done amazing things for Sara, and she loves going every day.  She was very upset when she was in the hospital and not able to go to school.  I'm glad that she loves it so much because we all know how important school is.

Monday, May 24, 2010

We're going home today!

The doctor came in this morning and told us that after Sara receives her 2pm dose of antibiotics, then we can go home.  I'm so glad, and we're ready.  Sara told the nurse this morning she wants to go home and get in her bath tub. 

So today we're just trying to pass the time, so we're doing crafts and watching movies.  Hopefully it will go by quickly.  I have to get us packed up and the car loaded, but that's no big deal.  I'm happy to do it!

Well, here are some pictures of my peanut's smiling face while she was doing all her crafts yesterday and today!  This circle will go as a section of a giant caterpillar that they are working to make go all the way around the playroom. 

This is the picture that Sara made downstairs during a craft time in the lobby run by some volunteers.

We also had a visit from some clowns yesterday.  After they were gone, Sara told me they were scary!

And lastly, here is my baby's beautiful smiling face while she is coloring this morning.  We're just trying to make the time pass as fast as possible until we can go home.  And coloring is always fun, especially with stickers.

The next update should be from home.  We can't wait to get home to our dog, and sleep in our own beds tonight!  I know that's what I'm looking forward to the most.

Sunday, May 23, 2010

Sara's doing better!

I'm happy to report that Sara seems to have finally turned the corner.  Her fever finally broke in the middle of the night, so she is now fever free!  She is in good spirits this morning, and drinking some on her own.  She didn't eat breakfast, but that doesn't really mean anything for her.  She's always been a sporadic eater.

With her fever gone, we will be going home tomorrow afternoon as long as it doesn't return.  Sara has to have 48 hours of IV antibiotics before we can be discharged, and her last dose in that 48 hours will be given at 2pm tomorrow (Monday).  We will then be allowed to go home on oral medicine, which she will probably be taking for at least 10 days.

Sara was feeling so good this morning, she pulled to stand in her bed to dance along with the show she was watching.  I thought you all would want to see her getting back to her normal self.  I just can't get enough of that smiling face!

We can't wait to get home to our own beds, and our buddy Tank.  And thank you so much to my dad and step-mom for watching Tank for me while I've been living at the hospital with Sara.  Hopefully he was a very good dog while Sara and I have been here.

And thank you to all of you who have sent prayers and healthy vibes our way!!  They're working, so keep up the good work. 

Saturday, May 22, 2010

Hospital Update

Sara had a long evening last night; lots of people wanted to see her.  Sara's dad, Curtis, stopped by, and so did my mom and sister.  And of course, my mom came with balloons from my Aunt Barb.   It was decided long ago, although I'm not sure by who, that Sara would get balloons each time she was in the hospital...and Aunt Barb is always the one to send them.  But since Aunt Barb lives in Ohio, my mom or sister usually picks them up and brings them by.  Sara loves balloons, and these are no exception!  Sara claims they make her all better.

Sara was also visited last night by my best friend, Kim, and her boyfriend, Patrick.  Kim has been a HUGE part of my support network for all of Sara's hospitalizations.  She always comes to visit us, no matter what.  She proved this last night by coming by to see us even though she had her tonsils removed the day before!  Here are Sara and Kim in bed hanging out together; my two sickies.  And as you may have guessed, that is Patrick on the left.

 And since Kim still isn't really eating solid food (and Sara didn't want to), they shared a Popsicle together.

Sara had fevers all night ranging between 100 and 102.  It made for a long sleepless night since they came in to check her temp every hour, and we had to wake her to give her Tylenol and check her blood pressure.  She did eat some breakfast, and had some visitors this morning including Curtis's mom and sister, and everyone who used to live with us (my sister, mom, step-dad, Brian and Alexis).  I managed to sneak in a shower while some of them were here to sit with her and keep her company. 

After my shower, we decided that maybe a change of scenery was in order.  So we loaded Sara up into one of the wagons they have here to go for a walk.  The wagons are pretty cool; they have IV poles on the back so the kids can ride in them and parents don't have to push an IV pole and pull the wagon too.  It makes it really nice and easy to go for walks or down to the play room.  Here is Sara all tucked up tight in her wagon for our walk around the lobby.

In the lobby they have the gift shop to walk through, but they also have a fish tank with "Nemo" and "Dorey" in it, and lastly a piece of motion art.  This motion art is amazing, and I can stare at it for quite some time.  These little balls move around the tracks and hit bells or bump switches to make things happen.  Its really neat and Sara loves to watch it.  I thought you all might like to see, so here it is.  This picture doesn't even come close to doing it justice, but gives you an idea of its size.  If you look carefully, you can see some of its tubes and loops.

Lastly, the biggest update is that her culture came back this morning.  The bug that she is growing wasn't responding to the antibiotics because they weren't strong enough to kill it.  We are starting her on a new antibiotic this afternoon that will hopefully do the job.  The down side is that she has to have 48 hours of IV medicine before she can be switched to an oral medicine to go home.  So the earliest we'll be out of here is Monday.

Of course, as things change (which they will) I will let you know.  She is still experiencing fevers, and her appetite is still suppressed.  She also has had no oral intake of fluids as of yet.  Her urine is much cleaner though, and her attitude is improved.  She's fairly active, in that she wants to move around in her bed and get in the wagon to go out and see things.  Those are good signs she's feeling better.  I'm still hopeful we'll be home in just a couple days now that we have the right antibiotic in place.

Friday, May 21, 2010

We moved into a room!

We finally made it up into a room.  Lucky number 834.  We will be living here until Sunday; that is the earliest we can hope for her to be discharged.  Here is a picture of our "new" home for the weekend.  I can't complain, as the room is fairly big and the couch pulls out so that I have a decent place to sleep.  The flat screen TV Sara's watching (off to the side of this picture) helps too!

 Sara is doing better then she was in the ER.  She is still lethargic, as you can see in the picture, but she is talking now and responding to questions from me and the medical team.  Having her settled in a bed with her two best friends helps, along with my pillow and her blankets from home.

Sara was glad to see that they no longer make her sleep in a crib.  She is now allowed to sleep in a "big girl" bed when she's here.  That makes it much better, according to her.

Sara wanted to make sure that everyone got to see her IV.  She knows that it will help her to feel better, and she was quite the little trooper when we put it in.  She did everything we asked of her, and was a super star!!

So far so good!  She's perked up and is looking better.  She's had some juice and a snack.  I'll keep updating the blog as things move forward.  Hopefully we will have an uneventful night and my post tomorrow will be relatively short.

Thanks to all of you sending prayers and good thoughts our way!  Its comforting to know that we have such amazing family and friends.

Sara's in the hospital!

Sara woke up with a fever today.  I knew she wasn't feeling great last night when she didn't eat any dinner, plus she's been sleeping a lot this week. 

This morning when I went in to get her she seemed warm to me.  I checked her temp and she was at 100.6 and said she didn't want to get out of bed.  I knew right then something was seriously wrong.  I got in the shower and dressed, which took about 15 min, then checked her temp again.  It was up to 101.4.  I called the doctor's office and they had an opening in 20 min. 

By the time we arrived at the doctor's office, her temp was 102.1 and she was fading fast.  She has had nothing to eat today, and only had 2 or 3 sips of juice.  So basically her oral intake is 0.  The doctor takes urine and blood to check the infection and make sure it hasn't moved to her blood.  We discuss a shot of antibiotics to get her started, then move her to oral.  By the time we drew blood and took urine, her fever was 102.8. 

Two weeks ago when we started this mess, her doctor spoke to her urologist to make sure the treatment was correct.  The notes from the urologist back when we spoke to him two weeks ago said that if she reached a fever of 103 that she was to be taken to the hospital for admission.  We were unable to reach her urologist this time, so we used the notes from 2 weeks ago as our guide.

At that point, the doctor and I both agreed that if we didn't want her sick for the next few weeks we should probably admit her.  So while the doctor called the hospital and set up her admission through the ER, I took Sara home and packed our hospital bags.  I used to be a pro at packing our bags in 15 min or less and not forgetting anything.  This time it took me twice that, and I know I forgot something.  I just haven't figured out what it is yet.  Guess its a good thing that I'm not as proficient as I once was at this; means she hasn't been here in a long time.

So here we are!  I'm writing this from a laptop while sitting in an ER room.  Thank goodness for free Wifi!  My cell phone works as well for any of you who want or need to get a hold of me.  We are waiting for the nurse to come in and start Sara's IV and take more blood and urine samples.  They said we might be in the ER a long time; the hospital is pretty full.  But the team is already working to find her a room.  We're in for at least a couple days, although hopfully not longer.

At this point, Sara's fever is still hovering at 102.6, she isn't eating or drinking at all, and she isn't moving around at all.  Honestly, she's barely concious of what is going on around her.  She doesn't even perk up when the doctor or nurse comes in.  She keeps falling in and out of sleep, if you can call it that, basically its a blank stare or her eyes are closed.  Overall, she isn't doing well.  I'm hoping once we start the IV and get some meds and fluids in her that she'll perk up a bit; at least enough to communicate and talk with us.

I will continue to post updates as information changes, and as often as I can.  My guess is I won't be posting again until we have moved upstairs, and there's no telling how long that could take.

Thursday, May 20, 2010

Children's Tumor Foundation Newsletter

As some of you know, Sara and I have been mentioned for various reasons in the CTF newsletters over the last year or so. We have been in for many reasons, such as events we've attended for the foundation, our radio interview we did to help raise money for our local children's hospital, and most recently for our trip to Disneyland back in Feb. of this year.

Here is the link to the newsletter that mentions our trip to Disneyland.  The picture and short article are on page 6.

Here is the link to the newsletter explaining the 1st Annual NF Walk.  There is a very large group picture; we are in the first 2 rows just right of center.  Sara's in her stroller in her pink snowsuit.

Both of these newsletters have all the information you would need to get a hold of the foundation, and you can also go to the Colorado chapter's website at here.

CTF sent out a flier listing this year's annual NF picnic time and location.  At the bottom they had some side notes, including a television show done by MTV about one of teen members and his journey with NF and the quote from my blog along with my blog's address!

I'm super excited to be mentioned in the flier because one of the reasons I started this blog, besides being nagged to death by friends and family for more pics of Sara, was to help raise awareness about NF and organizations that are working to find answers.

I haven't said much about Sara's NF and what all it entails in details because up until now only our close family and friends have even known this blog exists.  But from now on I will be making more of an effort to include NF related things so that we can all stay up to date with what is going on in the NF community and what research is being done.

I may not be able to cure Sara's NF on my own, but I can lend a helping hand and hope that what small things I can do will help out in a big way.  I'm not only doing this for Sara, but for myself, and for every other family, friend, or person who is effected by NF or knows someone who is.

As a community, we have the power to help make strides in the effort to find the answers we need to treat, and maybe even cure, Neurofibromatosis.  And to all of you who have supported Sara and I personally through this amazing journey, THANK YOU!!!  And lastly, thank you to CTF for giving me a chance to help them to make a small difference in the lives of so many.

This is a strong community of people, and we can do amazing things! I'm happy to welcome every new follower that wants to join my blog because you saw it in the flier.  I can't wait to share with you all that is part of being Sara's mother and handling her NF on a daily basis, and as a lifestyle.  Raising Sara hasn't turned out how I thought it would when I used to think about it before she was born, but I'm grateful that Sara has allowed me to be opened up to and accepted into an amazing community of families and friends!

Saturday, May 15, 2010

What I learned this week...

I'm glad to be able to say this week is over!  It was a long week and it had several VERY trying moments.  It was all I could do not to cry some of the times, and some others that's exactly what I did.  I was starting to wonder if this last week would ever come to end.

But now here I sit at the end of the week, and I look back and I guess it wasn't really all that bad (or I'm just telling myself to keep my sanity).  I can honestly say that it put my patience, strength, understanding, and acceptance to the test.  My strength as a mother was put to the test, and what I was willing to endure for Sara's best interests.  I was forced to use my patience to their very limits with a certain individual, and I learned a new way of understanding people.

Through it all I have learned a new level of acceptance.  I've never been good at this part since I have always managed to find a way to work the situation to my advantage, and manipulate it into something I can live with.  That wasn't a choice for either of my problems this week, so I had to face the hard fact that I just have to accept it.

And as I sit her now I just keep remembering that old saying that I have no idea where it comes from, but it is one of the most important things to remember.

Grant me the strength to change the things I cannot accept,
To accept the things I cannot change,
And the wisdom to know the difference!

I think that this week was to remind me of how to tell the difference.  I started out trying to figure out how to change things, but eventually had to accept that I couldn't.  I learned some hard lessons, and I hope that I can continue to remain strong as these problems continue to develop.  Maybe at some point it will be something I can then work on to change, but for now I am forced to have acceptance. 

Wednesday, May 12, 2010

New Shoes!

I took Sara to the hospital yesterday to pick up her new shoes.  It took a couple weeks to get them since we had to custom order them, of course.  We went in and had her fitted about a month ago, and then did a trial shoe for the right to see what was and wasn't working for her, then made the final product for both feet.

So now Sara has shoes to wear to school, and she loves them.  They have bugs on them, which she picked.  She is still getting used to them since she's only been wearing them for one day.  She is struggling to relearn how to pull to stand and take steps with her walker, but she'll get there with a few more days of practice.

I know that you all want to see them, so here you go.  There is a molded insert that goes into the shoe on the left foot, and then the right is just a boot.  So far these seem to be more comfortable for her than her old ones, and I'm hoping they're way more functional.

Here she is with her shoes on while getting ready for school.  She's a little distracted watching TV.  Can you tell?

Hopefully these will work great and help her to gain even more freedom and independence.

Tuesday, May 11, 2010

Sisterly Love

Today I woke up to look outside to a gloomy, dreary day.  Its May and the sun should be shining, it should be warm, and Sara and I should be spending time outside.  Instead the weather report is calling for lots of rain that may even turn into snow over night.  Snow for heaven's May!  Its just wrong!

Let's just say that it defiantly caused me to get out of bed this morning in a foul mood.  So while I was driving to work I made a point to think of all the great things in my life that make me smile.  The first thing that came to mind is my dearest friends, and you all know who you are.

These ladies are near and dear to my heart.  I share my whole life with them, even the parts I probably shouldn't or they don't want to hear.  I'm always ask them for things, and continually they are there to help.  They give selflessly of themselves when I am in need, and I can only hope that I come even half as close to being as selfless as they are.

They are there to hear my woes at noon or midnight, and the same for my OMG moments!  They cry with me, laugh with me, swear with me, and love with me.  These girls are my sisters, and forever will be!  I have a plaque on my wall that I found in a Hallmark store years ago when I was shopping with my sister.  We each bought one because we knew that every word of it was true.  So to ALL my sisters, I share it with you now.

There is no problem that sisters cannot 
comfort, combat, plot against, ignore, 
make fun of, drowned in chocolate sauce, 
or run over with a car!

This journey of life wouldn't be nearly the same without each and every one of you.  It wouldn't have as many laughs, as many tears, or as many memorable moments.  I'm proud to say that I get to cry with you, laugh with you, and plot with you.  Thank you!!

Monday, May 10, 2010

The Hard Part of Parenting

Recently I seem to be struggling to juggle all the things in my life that now require my time.  Sara and I have been through big changes in the last couple of months, and I know they are for the better.  But at the same time, it has been a lot of work and I'm just plain exhausted from it all.

I realize how large a task it is to be living on our own.  I knew what all was involved before I decided to take this step, but I forgot how much work it really is.  Last time I lived alone was 10 years ago...and I only had to worry about myself.  The easy things are the chores like laundry and mowing the lawn.  I figured that making a new schedule that worked for us which now had to include ten times as many chores would be the hardest.  I was totally wrong!

I've always felt (deep down) that I was raising Sara alone.  I had to play mom and dad from day one, even when her father lived with us.  He was distant and out of touch with Sara and what was going on with her.  He still struggles to accept Sara for the way she is.  He has grown much since our separation when it comes to that, but I feel he still has a ways to go.  So emotionally I guess I have always had the mind set of a single mother.  My parents divorced when I was 12, and I remember watching my parents struggle to figure out how to remaster the parenting skill in a totally new way.  I look back on that now, and realize how hard that must have been.  And although as a child I hated some of the choices they made, I now have come to understand why they did it (even if I still don't agree).

Part of me realizes now that I have always known I would end up a single parent.  Its the model I know, and it's what works for me.  And I don't feel like I'm taking anything away from Sara.  She still sees her dad and has a good relationship with him as far as I can tell.  She talks about him and the things they do and smiles while she says it.  If nothing else, I feel like Sara is gaining from having two households and two families.  She has just as many people to love and care for her, and it gives her the chance to learn how to adapt to life in a safe way.  Lots of people aren't good with change, but I think Sara is not included in that group.  Like me, she seems to handle change with minimal distress. 

Parenting Sara has never been easy, and I don't suspect that will ever change.  She presents many unique challenges when it comes to helping her to understand the world around her.  And here is where I usually get lost and confused!  I have no idea how to explain to her why she's different, or how come God chose her to carry this burden.  I don't know what to say when she will look me in the eyes and asks "why me".  I know that these questions are coming, and I don't have any answers.  I do know that she is a strong, amazing, smart, beautiful, and confident little girl...and that is the one thing I do know how to tell her!  I'm hoping that in reassuring her of her amazing qualities, that it will provide her the strength she needs to then go out and find the answers to those other questions on her own.  And those are questions that can only be answered by her.

Each day is a new adventure, and each day I have to take time to remember the important things, the good things in our lives.  We have an amazing support network of friends and family, a safe place to live and food to eat, access to amazing medical care for Sara, a wonderful job that I love, and a certain someone that is slowly becoming a larger part of our lives!  Each day I wake up and tell myself "I can do this!"  Because really, I don't have a choice.  And even if I did, I wouldn't change a thing.

I have been truly blessed to be given the challenge of raising such an amazing little girl, but that doesn't mean I know how.  Sometimes I get confused or overwhelmed, but that doesn't mean I can't do it!  I know I can, and I will!!

Sunday, May 9, 2010

Let's here it for Moms!

To all my fellow club members....

Sorry I gave away our secret.  I hope you all can forgive me.

Here's to having a day to remember!

Friday, May 7, 2010

Update on Sara's Infection

Many of you have been asking me how Sara has been doing since my last post.

I'm happy to report that Sara is doing better, and responding to her antibiotics well.  She still isn't 100% back to her "normal" self, but by the end of the weekend I suspect she will be. 

I do have to fight her twice a day to get her to take the medication, and each day gets a little harder since she feels better and thinks she doesn't need it.  I feel bad about forcing the issue, but I know its for her own good.  I don't want her in the hospital any more than anyone else, so it seems a small price to pay when I consider the alternative.

She isn't out of the woods quite yet though.  If she doesn't keep hydrated, then she could get sicker.  So far that hasn't been a problem.  Looks like over all she's on the mend and will be back to her old self by next week!

Thanks to all of you for your concern, and all the prayers you sent that it would turn out to be a simple infection.  It appears to be working!!

Wednesday, May 5, 2010

It finally happened!

It was almost a year ago, May 27 of 2009, that I was sitting in the waiting room at Children's Hospital for 4 very long hours while Sara had her urostomy surgery.  Since that stay, Sara has not had any infections or had to return to the hospital to be admitted for any reason.  I am incredibly grateful for that every day!

We all knew some day that she would get another infection; we just had no idea when that would be or how bad.  Apparently that time is now.  I took Sara to the doctor today for a small fever and other general things that indicate an illness.  Things like sleeping more, eating less, and drinking less.  She also had cloudy urine that smelled like it was rotting by the time I took her in.  She started showing symptoms last night at bedtime.

Luckily I think we caught it in time.  The doctor thinks that it is a regular urinary track infection, unlike the horrible kidney infections that used to land her in the hospital every month for a week or more.  We are treating her with oral antibiotics at home, which hasn't worked in the past but we're not playing by the same rules any more either.

I hope that the doctor is right, and that this doesn't turn out to be like the monstrous infections she used to have.  Since this is the first time since her surgery she's been sick, I'm not sure what to expect.  I always knew what to expect before the surgery when she had them.

I'm hopeful this will work, and praying as well.  Only time will tell, and if it doesn't you can guarantee I will be back blogging about our time at the hospital.