Happy Halloween!!

Happy Halloween from Pebbles and Bam Bam!!

I actually MADE the costumes:)...using a hot glue gun (because that's the ONLY kind of sewing that I do). They turned out pretty cute if I do say so myself:). And, yes, that is ALL Emma's hair:)....we got asked that MANY times tonight:) (even once by her own Dad:). I forget how much hair the girl has until I go to curl it like that. I am so jealous!!!

Hope you all have a Happy Halloween!

Good Times

Emma has FINALLY had good blood results:). It's been 8 months since her labs started going up (liver numbers that is). We went to Denver in July for her annual check up. Our GI doctor (who is a rockstar by the way) wanted to do a liver biopsy (we have not had one done since transplant 6 1/2 years ago), and he wanted her to stay overnight until we got the results. We thought that was a bit strange, but our GI is cautious and we like that about him. So, we stayed overnight and the next day as I was packing up all of Em's stuff to leave the doctor came in and told us that she was in rejection and we would need to stay for IV steroids for the next 5 days. UGH! So, we stayed, and the numbers came down slightly, but not all the way. So, they kept tweaking her meds (she is now on 4 X's the amount of immunosuppression that she was and HIGH doses of steroids), and FINALLY the numbers are back down. The hard part for me, and yes this is superficial, is the way that it all makes her look. She is now 15 POUNDS heavier than she was in July!! She was 34 lbs. and she is now 49!!! She is also SUPER hairy! I know that it is only temporary, but none of her clothes fit, and she gets red in the face SO easily! Also, her immune system is now very compromised so I fear that she will catch more...especially being in a BIG school.

But, for now we will be happy to have good numbers and hope that we can lower meds soon and have her numbers remain stable!

Now, for Emma progress....Emma is READING!!! WOO WOO!! It is beginning stages, but I don't care....I'm going to call it READING! She knows all of her letters and sounds, and she is starting to get A LOT of sight words:). I LOVE IT!

Sometimes I feel like I might be able to start breathing again for the 1st time in 7 years:)

What We've Been Up to.....

I know that it has been quite a while. It's been very busy around our house. Emma and I both moved to a new school....a BRAND NEW school. It has been an incredible experience for both of us. We have put Emma in Kindergarten for one more year. Yes, we are outside of the box thinkers....however, the more that we thought about it....the more we realized that is exactly where she needs to be. She is able to be in the classroom with "typical" developing children 90% of the day....and truly that is the way that she learns the best. If we would have put her in 1st grade she would have been pulled out most of the day. As Emma says, "It is AWESOME Mom!". It's been a great year so far! YEAH!!!

Here is Emma on her 1st day of school. Emma is still dealing with some liver rejection...ugh! (6 years post transplant and this is our 1st rejection). So, she is on HIGH dose steroids and HIGH dose immunosupresion (sp?) which is causing her stomach to be VERY large and she is getting more hairy by the day....oy!


We also took a trip to our family cabin. The kids LOVED playing outside, throwing rocks in the river, and just being kids. It is always SO beautiful there, and I always wish that we could go more often. However, it is 4 hours away, so we don't get there as often as we would like. Here's Owen (2 1/2 now....and loving life)....



Our other new adventure for Emma (and myself) is dance! Emma started dance 2 weeks ago at our neighbors dance studio. I am co-teaching the class (phew! it's been awhile since I've danced). We are both REALLY enjoying ourselves. It is 30 minutes of tap and 30 minutes of ballet. Emma has found her niche in life. She LOVES to dance, and I cannot wait until the recital!!! I have to admit that I have always wanted my little girl to be in dance, but when Emma came I wasn't sure that would ever happen. On the way to our 1st day of dance I had tears in my eyes as I thought of how far she has come.....how far WE have come. Life is SOOOO good right now!!!




I'll post again soon! Take Care all!!!

Summertime:)

Emma and Owen are jumping for joy this summer:). Life has been full of swimming, swimming, some camping, and more swimming. My kids are like fish! They love the water! It is so nice to see them playing together so well, and the things that they come up with together just make me laugh.

We head to Denver tomorrow for Emma's annual appointments. This has not been her best year heathwise, but it has not been her worst either. I'm apprehensive about what will happen at these appointments. I feel as if a dark cloud is looming, and the thunderstorm is about to hit. I've learned through my years with Emma to trust my gut instincts, and I am pretty worried right now. Hopefully, it will all be OK, and my worrying will have been for nothing. Emma will have numerous appointments on Monday and Tuesday, and she will have a liver biopsy on Wednesday (which will require an overnight stay). Keep your fingers crossed for us that all goes well.

Long Time.....

Where do I even begin? It has been SO long since I have blogged. However, there is a reason....I decided that I would not blog until I was in a better place. It's been pretty dark the last several months, and I just needed to have something positive to say before I could come back here....I needed this for me.

So, I am VERY glad to say that today's post is FULL of good news. Let's start with Emma....who will be a Kindergartener again (yes, it will be for the 3rd time....and it is completely because of her parent's out of the box thinking:). We are thrilled that our district has agreed to do this for many reasons. First, Emma is TINY! She looks like a 3 or 4 year old....so, she will fit right in with the incoming Kdg. Second, that is exactly where her skills are....she recognizes letters, is learning how to write her name, etc. Third, She will go with this class all through school, and she will be 20 when they all graduate, therefore her peers will not graduate before her and leave her there for another year or two. And last but not least....she will be able to be with typical children most of the day. We are very excited for her.

Then, there is the wonderful news....Emma will be going to a new school!!! Yeah!!! After many many many many issues with her sped teacher this year (that we are not going to talk about because this is the good news post after all), we asked to have her moved at the beginning of next year. The staff that will be working with her has come out to observe, and they have been SOOOO positive! It has been great, and I am hopeful once again that Emma will be in a very good place. She will go from a school of 27 (kdg. through 5th) to a school of 260! YIKES!! But, I feel that it is a GREAT move!!

OK...now for my great news! I will also be moving to the school that Emma is going to:)! YIPPEEEE!! Now, I will not be Emma's teacher, and I will not even be teaching in the same grade as her (I will teach 1st grade). However, if I stayed at the old school I would've been 30 miles away from both of my kids....and that just didn't make any sense. Plus, I would have to continue to work with the Sped teacher....and that's just not a good idea, so I am going to transfer....and I am VERY excited...and nervous....but mostly excited:).

In Owen news....he's doing great! He celebrated his 2nd birthday and he is DEFINITELY 2, but as his speech progresses...his tantrums lessen, so the sun is shining a little more in our neck of the woods.

Oh, and other good news! Tim (my hubby) graduated with his master's 2 weeks ago...so, he can now become a principal. I don't think that we'll move next year, but we'll see what the next year brings.

So, that is our update. Life is GREAT! We are a happy little household, which is very welcome indeed after the year that we've had. It's all good!!:)

Here are a couple of pics of my cuties:)...they're from Easter, but I haven't posted in a LONG time!

6 Years of Sunshine!

6 years ago today at 9:35 in the morning we received a call that changed our world. It was a cold, dreary, snowy day much like today. However, the phone call told us that the blanket that had been shadowing our world for the past 7 months was about to be lifted, and we could see the sun beginning to peak out of the clouds. The call was one that filled me with fear, but the fear was quickly replaced with a sense of peace. I KNEW that everything was going to be OK, and as we started on our journey toward this new chapter in our lives I knew that things were going to get better....that was the only option.

The morning of March 19, 2004 was similar to the previous morning. When I went to get Emma out of her crib she smiled at me. Her eyes were just as yellow as they had been the day before....verging on orange. It amazed me at that point that when Emma cried her tears were yellow. I prayed that morning just like I had done every morning, "Dear God please let this be the day". However, we were in denial that it could happen so soon. Emma had only been on the transplant list for 2 days short of 2 months. Therefore, we had not packed a bag....we were not ready to go. Nonetheless we knew that any call that came could be "the call".

As I changed Em's diaper that morning I noticed blood in her stool. I cried when I saw it, and I knew that our time with her was wasting away. She was sleeping 18 hours + a day, and she was in desperate need of a new liver. As I dropped her off with the sitter that morning....I knew. As I drove away with tears streaking down my cheeks...I knew. I knew that it was going to be "THE DAY". I don't know how I knew, but I did.

1 1/2 hours later I got the call, and I cried and begged God to "not let my baby die". Then the sense of peace took over, and the cloud moved away.

Sunshine has shone on us every day since. I see the sunshine every time that I look at the smile on Emma's face. I hear the sunshine every time I hear her say, "I Love You Mommy".

AND, I FEEL THE SUNSHINE EACH AND EVERY TIME THIS AMAZING MIRACLE GIVES ME A HUG!!

I'd like to share my Snapfish photos with you. Once you have checked out my photos you can order prints and upload your own photos to share.
Click here to view photos

Now, if you know me well you know that I am not an overly religious person. However, today I do have to say Thank you God for giving me the sunshine....she helps me to see the path of our journey ahead.

Under My Rock....

Hiding under my rock away from the world....if only I could do that. If only I could take my beautiful family and hide away from all of the world I would be as happy as could be. However, that is not reality. Reality is people being unfair and cruel, harsh and untrustworthy...yet, they get away with it! My child is the victim of a teacher that should.not.be.teaching!!! She truly has no sensitivity factor. She does not understand that the harsh tone and words that she uses are not acceptable. We've been rounds. Other staff members have spoken on my child's behalf....to the administration....yet, nothing is being done. Now, they have decided to video Emma to develop a behavior plan for her....how about coming up with a behavior plan for THE TEACHER!!!

I am stuck....I don't know what to do....this situation is overtaking my life.....and I feel like I have absolutely NO control. Moving Emma to another school is out of the question, and this teacher is the only special ed teacher in our school. This completely SUCKS! I was told today that "A parent's viewpoint is often skewed....not that that is all of it, but I think it is some of this". UGH! 7 other staff members have also reported this behavior....really....my behavior is SKEWED???

Any thoughts?? I need input??? PLEASE!

Emma

Emma is so much fun! Granted, I have always LOVED being her Mom. I feel so blessed to have been chosen to have her as my daughter. I have found though....the older she gets the funnier she becomes. Maybe it is the fact that I can understand a little better what is going on in her head. But, as I watch her I am in awe at the things that she is picking up from her world. I needed to document some of these things so that I can look back and see where she was during this moment in time.

*Emma LOVES to get herself completely dressed. She is beginning to want to pick out her own clothes (YIKES!). I am very very much a control FREAK about Emma's clothes matching and her hairtie matching, and I am SO not ready for this new milestone in her life. I have been picking out 2 outfits and letting her chose between the 2, and so far she is OK with that??? Hopefully, it will last:). I am however THRILLED that she is wanting to branch out and independently dress herself.

*Emma LOVES to read....and she will tell you that she is a "professional reader" (and yes she does use those words, and no I do not know where she has heard them). I love that she thinks she is a great reader. As a teacher I know that that is 1/2 the battle to getting a child to read....confidence.....she's got that....now we just have to continue to work on letter recognition, sounds, sight word recognition....and the list goes on and on....but, we are ON THE ROAD to reading....and that is HUGE!

*Emma knows words that are not appropriate to use (insert stupid, dumb, other words...not that I say them:), and she will promptly tell you upon hearing one, "Don't say that word....say OH MAN". She truly thinks that Oh man can be inserted for any inappropriate word combination:).

*BIG NEWS!!!!! EMMA IS AN INDEPENDENT SKIER!!! This is HUGE for Emma and it is AWESOME for our family. Our school went skiing again last Friday, and Emma is able to ski completely on her own!!! Tim and I have always loved to ski, but since the birth of Emma we have been very few times. So, the plan is to ski with Em this year and teach Owen next year....then, we will be a skiing family:). YEAH! I'm so excited to be able to do something that we have always loved as a family:). (pictures will be posted SOON)

*Emma is exactly 36 inches tall and she weighs 35 lbs. She is currently wearing a size 8 shoe:). She's our little peanut with an ENORMOUS spirit!

That's all for Emma news for now:). So much more to tell, but I have a little man (Owen) who is not a happy camper and he needs his Mama:).

Full Circle

When Emma was born 6 1/2 years ago I will admit that everything was a blur. I often describe it as an out of body experience. People will ask, "How did you get through it?". The truth is I don't know how I got through it? Some days I'm still not sure how I get through it....I just do.

However, thinking back to 6 years ago at this time has always been painful. It was an extremely difficult time, and it angers me that I have very few memories of Emma's first year of life. The memories that I do have are blurred by medical terms, medical equipment, and stressful situations. The truth is that Emma's life truly began on March 19, 2004...the day that she received a new liver.

This past week that precious day (the day we "got the call" that there was a liver waiting to save our baby girl's life) came full circle.

First of all, let me explain the day that we got "the call".....I had just arrived at our small ski resort with our school. I teach at a rural school (30 kids grades Kdg.-5th), and we ski every Friday during the winter. We had just arrived when someone came to find me to say that I had a phone call. At that moment I KNEW!! I went and took the call, and I cried and cried and cried ALL the way to my car. Luckily my sister was there to take me back to town.

Ironically, Emma's liver came from a beautiful 17 year old girl who had the misfortune of a ski accident in Colorado. She was not wearing a helmet and suffered a fatal head injury.

Fast forward to 6 years later. Our ski resort has not been operational since March 19, 2004...the exact day that we "got the call" was the LAST day that it was open. Fortunately, someone new purchased it, and it re-opened this year. Last Friday, our little school returned to the ski resort......with Emma PARTICIPATING!!!

A TRUE MIRACLE in every sense of the word!! Luckily, her Dad was able to join us. The 3 of us spent the entire day together. All of the kids had fun, but Emma was just glowing (and so were her parents). I don't think anyone truly understood the impact that it had on us that day.

It had come full circle! It was a day of understanding....a day of joy.....a day of memories.... a wonderful day where new memories were created. We felt so blessed to be able to have her there with us! Truly miraculous!

(OH! And I made SURE that every child in our school had a helmet to wear on the slopes!! Isn't it ironic the lessons that life teaches us?)








Can you see how happy she was?

What SHE Deserves

What does my stunning, red-headed, ornery, smart, strong-willed, funny special needs child deserve from EVERY educator that EVER is blessed enough to be a part of her educational journey?

She DESERVES to be treated with dignity
She DESERVES to be given respect
She DESERVES to have that educator be a role model to the other students on how she should be treated
She DESERVES to be pushed to succeed to the highest level of her ability
She DESERVES to feel safe

Does Emma deserve to have it announced in front of her entire class....and 5 minutes later in front of the entire school...that she was "naughty" today and maybe tomorrow she will choose not to be a "bad" girl?

Does she deserve to step off of the bus and come running to me with tears rolling down her face while she is saying, "I lost my sticker, but I'm not a bad girl...I'm a good girl"....and continue to cry about it until 10:00 at night? Only to have the same teacher the next day say, "Well, she doesn't look too traumatized from it!

Do Emma's parents deserve to open her communication notebook (the teacher writes what she did at school that day) to read the words, "Emma was VERY NASTY to me today".

Is it just me or does the "educator" need to be "educated" on how to be a professional.

I have gone through so many different emotions on this whole thing. This is just one of MANY incidents from this year that have happened. But, I am done.....I am turning it over to my husband for him to deal with.

This "teacher" used to be one of my best friends, and I think that makes this situation that much more difficult. She came to Denver (10 hour drive) for both of Em's major surgeries, she has watched Emma for us at times that no one else would......she used to really CARE about Emma.....but now it is quite apparent from her words and actions that she does not like her at all!! It makes me sad....it makes me mad....I do not understand....

And it makes me feel that throughout Emma's educational journey this is what we are constantly going to come up against....teachers who do not see Emma as someone who deserves dignity and respect....teachers who do not treat her as they would any other child....teachers who know that she cannot go home and fully communicate her thoughts about what happened at school that day so that her parents can decipher through it to know if she is being treated well.

I was out of the building the day that the above happened.....I heard it through the grapevine after I made some calls when Em was crying. I feel bad that others are talking about this teacher, but then again I don't!!!

I have taught in that school for 10 years, and I can honestly say that I cannot think of one incident where I said or did something that I would not want a child to go home and tell his/her parents about. So, if the teacher didn't want it to get back to me....she shouldn't have done it....and she shouldn't have written it in the notebook.

A meeting has been scheduled. A meeting between us, the teacher, and the principal. I have had 2 other conversations with this teacher this year about this same issue....apparently it is not going to change with just me. The principal has also already spoken to her (after 6 out of 8 of our staff went to talk to him about the way she was treating Emma). It's an issue that is bigger than I can make it sound on here. I don't know what will be done about it???

Yes, we could move Em to another school, but should we really have to do that when the school that she is in is best for her in every other way?? Should we really have to do that when the teacher is the problem???

Too many questions...too many issues....have I mentioned that I am tired???

I'm Tired

Can I just take a little break from seeing a silver lining on everything that I write about on here. I just need an outlet for a little while and maybe...just maybe it will make me feel a little bit better.

Can I just say that I am TIRED.

I am tired of CONTINUALLY having to advocate for anything and everything that my child needs.

I am tired or worrying about the future....or if there will be a future for Emma.

I am tired of her hitting and kicking and pushing and me not being able to understand WHY?????

I am tired of other children omitting her from games because she isn't always "nice" (see the previous).

I am tired of not being able to explain her behaviors.

I am tired a person who works with her who DOES.NOT.LIKE.HER....and it becomes more and more obvious every day.

I am tired of educators that I can already see placing a "ceiling" on her learning capabilities.

I am tired of not having Emma be invited over to friend's houses for play dates.

I am tired of daily medications.

I am tired of Emma not being able to name her colors....no matter how much I work with her on them.

I am tired of being on an anti-depressant to deal with my depression...and still feeling depressed.

OK...there is A LOT more that I am tired of....but right now I am just tired and I need to go to bed so I can start a new day that will HOPEFULLY not be as tiring!!

Still thankful....just VERY tired!

Everyday

As you enter into our house, you will see a large sign that states "Everyday is a Gift". Different people may have various interpretations of that sign. 6 years ago I clung by every thread of life that was in me to make each and every breath that my child took...into a gift for I was unsure how long the gift that I had been given would be on this Earth with me. 6 years ago today we waited...and waited....and waited some more. What were we waiting for? We were waiting for our INSURANCE. Our insurance was slower than the tortoise in the Tortoise and the Hare in deciding if all systems were go for our precious child to be listed for a transplant. Every time the phone rang we would get our hopes up, and every breath she took we watched....and we waited. The moments that she was awake (at that time it was about 3-4 hours a day) we cherished. We begged for her to be given a second chance at life....her first chance seemed far too short to us. She was only 5 months old...we could not fathom losing her 5 short months after we first saw her face.

Then, the other thought that was wearing on my mind.....another family would have to lose their child for mine to live. What kind of a sick person was I to wish that upon anyone, but I just wanted my baby to get better. I wanted to plan her future whatever it may be. I wanted to see her go to school her first day and lose her first tooth. There were so many plans I had for her and I to do together. I came to the conclusion that whomever she received the liver from would unfortunately lose his/her life anyway (whether my child needed a new liver or not). That was the only way that I could get past my thoughts. I just prayed that the family of that child would make the decision to donate.

Yes, everyday is a true gift. I often lose sight of the package that I get to open every single day. When that beautiful child comes bouncing into my room each morning to wake me up....it begins a new day that is to unfold. The gift is in whatever happens that day. 6 years ago I was clinging to every day and praying that my baby would open her eyes the next day. Today, I am blessed to watch her growing and becoming a child that I am so very proud of (and fiercely protective of).

Tomorrow marks 6 years since Emma was placed on the transplant list (after a 45 day wait from the time she was evaluated and deemed to be a "proper" candidate for a transplant. Insurance took 45 days!). Tomorrow I will cherish every breath that Emma takes, and I will breath a lot easier than I did 6 years ago. I will be enjoying the gift!!

Here's Miss Em 6 years ago....do you see her glowing eyes? She was such a pistol....even when she felt lousy....she would never keep her oxygen in her nose!!

3 in 1 WOW!

My baby is growing up. One week ago we were SO excited that she had lost her 1st tooth. The tooth fairy came and gave her $2.00....although she told everyone that she got $5.00. She must have had a premonition because 5 days later she lost 2 MORE TEETH!! She was playing with a chip clip (the kind that holds the bag of chips shut). I don't know exactly what happened but she started crying and I went in the living room to find blood all over her face and 2 teeth laying on her lap?? The teeth WERE loose, but they weren't ready to come out yet. So, my baby girl lost 3 teeth in 1 WEEK!!! For the 2 teeth the tooth fairy came and she DID bring $5.00. So, Emma's a rich little girl who is now trying to pull all of her teeth out to bulk up that piggy bank:).

Her new teeth have already started to come in, and they scare me just to see them! They are so crooked!!! Her little mouth just has no room for big teeth (it didn't even have room for her little teeth). So, my hope is that they will at least be WHITE!! Here's a little trivia for you (maybe you already know but I sure didn't in my before Emma days)....if a baby is severely jaundice (to the point of transplant....not just "new born jaundice" which is actually a different kind of billirubin) while his/her teeth are forming, the jaundice gets in the teeth. With a new liver the jaundice leaves the skin, but the teeth are permanently stained. PHEW! Aren't you glad that you know that bit of useless trivia now? So, Em's teeth are a yellowish-greenish-gray...and always have been. I just want to see white in her permanent teeth (because those were not forming at the time of her jaundice).

HA! I just had to laugh when many commented that you had never seen me before:). Maybe I'll post more pics of myself soon....after I lose about 20 pounds!! I think it would be MUCH easier to just never get fat in the 1st place and maintain your weight than to gain weight and try to lose it!! I do not like to work out....and I love food!! Bad combination!!! I've never had a problem with weight....until I went through 2 pregnancies (where I kept on 10 lbs. each time). I know that it's not a ton of weight, but I.CAN.NOT.LOSE.IT!!!! Hmmmm.....maybe I'll go get a cookie now:). I wouldn't trade my 20 lbs. back and not have my children though!! They are SOOOO worth it:).

Owen's girlfriend:)

I know that it seems like I have fallen off of the face of the Earth. Quite honestly, at times lately that has sounded like a good plan (no....I'm not suicidal or anything....just some things that are going on that are difficult....in regard to Emma). Sometimes it's just easier for me to hide in my little hole than it is to share. So, I disappeared for awhile, BUT I am back now. I'm going to take a little break from my day-to-day Make-a-Wish trip postings, but I am going to share a few MAW pictures.

Owen FELL.IN.LOVE with Ariel. I may have mentioned this before, but he was quite smitten! However, he was totally playing hard to get. If you go to YouTube and type in Owen with Ariel you will see my little man in action. It is quite hilarious:).

Here are a couple of pictures of Owen and Ariel:





And here is a picture of our family in front of some of the 5 million lights from the Osbourne family spectacular! They lit up the streets in Disney Hollywood. It was fantastic!