This Girl

This girl that you see is the one that we were told would not walk or talk. This girl is the girl who we were told would not be placed on the transplant list for the liver she so desperately needed because she would not have a "good quality of life". This girl is the girl whose funeral we have planned more than once. This girl....who is this girl? This girl is my child who I love with a fierce protectiveness that empowers me to make decisions for her and stand up to be her voice. She is the rainbow at the end of every rainstorm. She is the one who has overcome every single obstacle that has been thrown at her. This child has made me stronger than I ever knew was possible. As we come upon Emma's 8th liver transplant anniversary the emotions that run through me are difficult to put into words. It always amazes me that it hits me so hard every year. It is like I am reliving it, and even 8 years later I remember every single detail of the 2 months that Emma was listed and transplanted and all that transpired to make that happen....and all that happened afterward. I cannot fathom not having this child here with me today. She is my sidekick through life. She is my shopping buddy, my social butterfly, my sassy little preMadonna, and I love her with all of my heart (well, she does have to share it with her brother:). Next Monday the 19th of March we will celebrate 8 fantastic years with our new liver. We will pray for the family that made the incredibly difficult choice to donate their beautiful daughter's organs in the most difficult time of their lives.

Multiple Personality Mama

Wow! I can't believe it has been a year since I have posted something to this blog. I imagine not many people reading this, however I feel the need to document some of my feelings, and this is a great release for me.

It's been a great year in so many ways. Emma is in 1st grade this year, and overall she is doing fantastic! Owen is almost 4 and in his 1st year of "pretty" school (pre-school...he calls it pretty school). He loves it, and I will never tire of hearing the stories of his friends and how his day was. Never underestimate the power of speech and communication! Although Emma has a full dialect of speech now, she had none (or virtually none) at Owen's age, and I never got to hear about her pre-school. We feel very fortunate that Owen is attending the same special needs preschool that Emma did. No....Owen does not have special needs, however they accept 2-3 "typical" developing students per year, and Owen is one that was chosen. I value the questions that he comes home and inquires about his classmates. I feel that by giving him truthful answers, I am building a voice for him to help him answer questions when they are asked of his sister. At this point he just knows that she is fabulous and annoying at the same time....she's his sister:). However, the time will come when someone will comment, and I want him to be as prepared as possible.

Days like today make by heart feel like it has been stabbed. Emma's class is making fun of her...the ENTIRE class!! The music teacher came and spoke to me about it, and I feel SO thankful to have teachers that are willing to address these types of issues and not simply overlook it, but it breaks my heart that 1st graders are seeing the difference in her and feel like it is OK to laugh at her and make fun of her. Now, that is my Mama side!! My teacher side knows that these young minds simply need to be educated on the differences of people and why what they are doing is not OK. However, why does it have to start so young? Emma would never hurt anyone. She honestly has the most beautiful soul of anyone that I have ever met. She loves all that she meets, and she has never met someone that she hasn't considered a friend. I think what irks me the most is the fact that she has struggled for every single thing that life has thrown at her....including simple things like learning to sit, crawl, walk, talk. Why can't ONE thing be simple for her....and that would be earning the respect from others. In my opinion she has already EARNED that!!! RESPECT her!!! That's all that I ask!!!

Phew! I feel MUCH better now:). On a better topic...Emma is READING!!! Yeah!!! It brings tears to my eyes every time that she climbs on my lap with a book and begins to read! The power of never giving up!! I cannot express how proud I am of her!!

In closing...here is a picture of the Sassy Pants Princess! We cut her hair, and it is adorable (and so much easier). This picture was taken in November and it has already grown a ton! LOVE IT!

If you've made it through this post bless you! Life is what we make of it, and I chose to see the amazing things that happen every day, however there is the occasional moment where the breath is taken from me and it takes awhile to refill my lungs with good air!

A Great Catch

Well Blog family...it has been awhile since my last post. So, this was the best title that I could think of. We have been ice fishing... ALOT this winter. Emma LOVES to hold the fish, while her brother loves to tell us what a fish "says" while he just moves his mouth without a sound.

We had Emma's MDT tonight. She is due for her 3 year eval, so the team needed to meet to discuss what testing we wanted to do. We are "those" parents...and proud of it. I ask why, and so does my husband....A LOT!! I asked what each test would accomplish and how the results would help us to achieve her greatest academic potential. What we DON'T want is to just have a bunch of professionals going on a hunt to find out what is "wrong" with her. If it's going to help her or those around her to make the best of her education....great! If not....we will not consent. It is our parental right.

For example...we will not consent to an IQ test. There are various reasons for this. We have both been educators for a long time. There are various kinds of teachers out there. However, we happened to have one of them last year.....she knew the RTS label was probably what Emma had. She put a ceiling on our girl's learning, and for an entire year....Emma played with play-doh, watched movies, and took naps....THAT is what her entire day every day consisted of.

This year, we have an entirely new team. They BELIEVE in her! I truly believe that they are valuable educators that would believe in her regardless of a number shown on an IQ test....however, once that # is placed in her file it is readily available to any future educator that she has, and what if we end up with another one that does not believe? It's a twist....no doubt about it!!

So, onto this year. Emma is writing her name. She is copying sentences, she is at grade level on her standardized tests in the area of reading and language. She is making gains in math. She is READING (sight words and 3 letter words mostly, but she is DEFINITELY going to be a reader)! YEAH!

We are so proud of our girl! She just shines every day!

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.