Monday, December 19, 2011

Visit with Santa

We went this weekend to finally tell Santa what Sara wanted for Christmas!  Sara is in the prime of believing in the magic of Santa, and its amazing to see.  She told him she wants a new play kitchen (check), and a new Cars video game for her Mobigo (and check).  Of course, Santa promised to bring her everything she wanted.

We also had the other kids with us as well, so everybody got their turn, even the newest one.  Here are a couple of pics I thought you all would enjoy.

Merry Christmas everyone!  May you have a truly magical holiday!

Tuesday, December 13, 2011

Rest In Peace

Yesterday ended on a very dark note in my family.  I spent the evening at my dad's house with him, my sister, my step-mom's parents, and my boyfriend.  We were all gathered there, with the police and the coroner.  My step-mother, Amy, died at home!

I don't think its sunk in for any of us yet.  It was so sudden, and the wound so fresh.  All of us keep wondering if there was more we could have done to help her.  She was sick such a very long time.  I'm glad she's no longer suffering, but I wish there was something we could have done to make her better.

Of course, I am doing all I can to support my dad through this very difficult time.  All of us are.  I'm worried about his MS, and how it will be affected.  I don't want him to have a relapse and this already incredibly difficult time be even worse.

And through it all, I keep thinking of Sara.  She's with her dad right now, and I wish she was with me so I could hold her and tell her how much I love her.  But she needs to be with him while I help my dad make arrangements and deal with insurance and things.  Plus, how do you explain death to a 4 year old?  Its something I'm not ready for or know how to do.

Rest in peace Amy
You will be greatly missed
Love you

Sunday, December 11, 2011

2011 Christmas Letter

Dearest Family and Friends,

I can't believe that another year is almost over, and what a year its been!  I think our biggest news of the year is that Sara made it the whole year without having to be hospitalized for any infections!  Every day that passes is a new record in that department.  Currently it's been 18 months...and counting.

As for school, Sara will be headed to kindergarten next year.  I can't believe it!  How did she get to be so big?  Currently Sara is the smartest kid in her class (and yes, I know every parent says that, but I have the tests to prove it).  She is academically ahead of her peers in almost every area, and her math skills are almost at a 1st grade level.  She is already starting to read and has quite a few words she recognizes on sight.

Sara may have some challenges coming up on the health front, but that has yet to be decided.  This year was actually a pretty easy year in regards to the medical portion of our lives.  Sara's Jan. MRI was so good that we decided she didn't need to have one for another year.  She had a second one in Oct and the results were the same.  Her abdominal tumor hasn't showed any growth, her kidneys are doing really well, and overall she continues to be defying most of what the doctors think she will do.

Sara has grown leaps and bounds in her mobility this year.  Sara is walking more at home, but still uses her wheelchair and crawling to get around at school.  She is doing some table surfing at school, but it takes her a long time and I think she's worried she'll miss something cause she's so slow that way.  But she now has the upper body strength to keep up with the other kids when walking in line, and being the line leader is her favorite part of school.

As for me, I'm still working for my dad at VAC.  I love my job and the people I work with.  I can't believe I've been there 4 years already, and that its the longest I've ever stayed at a job.  The thing I love the most is things are never the same.  I can't even keep my daily routine the same for more than a week or so before a project or crisis comes along to change the rules.  And I also really love that a lot of the work we do is protecting our troops and bringing our service men and women home safe!  It gives me great pride to know I do something that helps so many.

The only other major thing in my life (other than my wonderful job and my beautiful daughter) would have to be my boyfriend.  Kevin and I have been together for 2 years now, and its wonderful.  He is the most kind and caring man I've ever met.  He treats both Sara and I like royalty and is always finding new ways to spoil us both.  I can't imagine not having him in my life now!  Through all the drama that is my family, he just takes it all in stride.  He's so amazingly tolerant of my random emotional break downs and my completely neurotic moments; there is no way there is anyone else out there as patient as he is.  And he is so good with Sara!  They get along so well, and Sara really has developed a wonderful relationship and attachment to him.  We really are starting to become a small family, and its a good feeling!

When I look back at this year, I see what an amazing year it has been!  I look at all the blessings I've been fortunate enough to have this year and in my life always.  I'm ever so thankful for all that God has provided for me and my family, and that he has kept Sara healthy for these last 18 months.  I hope that God will continue to bless all of his with his astounding grace and forgiveness.

I hope that each and every one of you has the most joyous of holidays!  Sara and I would like to wish you a very merry Christmas and a most happy new year!

Friday, December 9, 2011

The Dentist

Sara did great at the dentist yesterday!  Of course, its easy to be a good patient when you don't actually have your cavity filled.  Let me explain...

This was a new office we had never been to, and I was hoping it was good because the lady I took Sara to last week was unimpressive to say the least.  I walked out of there knowing I would never bring Sara back there again.  The only thing she did right was refer us to this guy to have Sara's cavity filled instead of trying to do it herself.  She never asked about any of the medical information I put on the form, like the meds Sara takes, what she's allergic to, or what type of kidney problems she had.  She forced Sara to comply instead of just explaining what she wanted to do, which is what Sara likes and what I told her to do.  Sara does just fine when you explain to her what you're going to do and how its going to feel, but this lady refused to change her style at all. 

And I cannot say enough about how much I love this new dentist!  He actually asked me about the medical history I put on the form...unlike the previous lady.  And since he was unfamiliar with NF, he asked about it so that he knew enough to make good decisions for Sara.  And after discussing it, he decided that even though our appointment was to have Sara's cavity filled he wasn't going to do it.  The reason?  He wants to consult with her urologist to make sure the drugs he wants to use aren't going to be too hard on her kidneys.  Brilliant!!

At that moment, I loved this guy because he really was concerned about what was best for my child.  And then instead of shooing us out the door once that was decided, he took the rest of the appointment to sit with Sara and talk with her and explain things around the office and make Sara comfortable around him.  Then when she was comfortable, she let him look at her teeth.  She opened her mouth willingly and he even got to poke around, clean her teeth, and take xrays!  I didn't have to hold her hands down so she couldn't cover her mouth, try to calm her, or leave the office with my child in tears.

This is definitely the dentist for Sara!  He also told me that to make sure her tooth doesn't have issues later he preferred that he put a crown on it just because of where the cavity is located on the tooth itself.  And he also told me he can save her front tooth, something the last lady said was not an option.  Sara face planted about 6 weeks ago, busted up her lip and ever since then one of her front teeth has been getting darker and darker gray.  I figured it was already dead, but he said he could save it.

So Sara is headed back to the dentist in a couple weeks.  She will have a crown put on her back tooth with the cavity and she will have a root canal done to save the front tooth.  My daughter will also have her first cosmetic procedure when he changes the color of the tooth with some resin so it isn't an ugly gray color any more.  I'll be glad when its done, but I'm not nearly as freaked out about it as I was today before meeting him.  Sara is going to do fine, and I know its all for the best.  This guy I trust, and Sara does too (that's what's really important). 

Monday, December 5, 2011

The News

Okay, okay! I know I haven't blogged in a long time, but you know how it is. Life just got in the it always manages to do.

With that said, here's a little catch up.

Sara is doing great! She's the most advanced student in her class academically, and she is as healthy as she's ever been...except for a cavity. Oops, guess I need to be more forceful in demanding to help her brush her teeth. She doesn't want help brushing her teeth, and so I decided not to fight it. I stood there and directed, but was forbidden to touch the toothbrush itself, and I figured that some brushing was better than no brushing. Guess I was wrong!

So today I have to take Sara to have her cavity filled. I honestly think this will be one of the hardest appointments for Sara. Now I know that sounds weird considering all the MRIs and other things she's done, but the difference this time is she'll be awake. This time she has to be cooperative and there will obviously be some pain involved...pain she'll remember when it's over. She hasn't been through an appointment involving pain while being awake since she was super small, but yes she's had IVs. I don't know about you, but I think a stick in the arm is far less painful than a poke in the mouth, so I expect this to be difficult. I hope I'm wrong!

And at the same time, and I know this sounds so wrong, I'm relieved that for this one time my child is going to the doctor for a normal kid thing. For once she gets to be a "normal" child and experience a perfectly normal kid thing (even if it isn't a fun one). Her NF will not play center stage just this once, and I'm so glad for her. Doctor appointments not involving her NF are pretty much non-existent, so this is a nice change...even though it is one more appointment.

But other than that "small" hurdle, we're both super excited about Christmas. We've put up our tree, decorated our house, and been reading the christmas story a lot. Santa has been super busy shopping, and is happy to say that he's already done this year...thank goodness. And it doesn't hurt to have the naughty list on your side either when certain small ones don't want to clean their room.

Overall, life is good! I have no complaints, and am continuially reminding myself how blessed I am in my life. I have much to be grateful for this year, and feel so lucky to feel so blessed and happy in my life.