5 Good Things

It is glass half full time.

5 Good Things About This Week;

(1) This purse for $8 shipped. Yes m'am. I said $8 shipped.

(2) The fact I was able to capture a photo of this sweet baby doll in all of her "I just want to eat her" cuteness.

(3) The snow on Wednesday. Yes it was in the 70's last week. Yes it was cold. But you know what? I'm grateful I still have my eye sight to see snow.

(4) Painting pumpkins with my sweet little family, all while Jack kept trying to knock the paint over and eat the brushes.

(5) These two new additions to the Stella & Dot line especially for tweens! So adorable and perfect for holiday gift giving!

What were 5 good things about your week?

Rainy Weekend Babble

I had a joy filled week, maybe that is why I'm a little blue today and the rain is getting me down? Who knows. R and S are both napping, so I am taking a mental break from life. Well okay, I'm doing laundry, working on Stella & Dot business, and catching up on my guilty pleasure T.V. show. But this commercial makes me smile. ;)




As I said, it was a busy and fun week. Monday was 16 years since my transplant, a good friend spent a few days with us and afforded me the luxury to escape from reality for a few days (post dedicated to this visit coming soon), and Friday was my darling cousin's 21st birthday. We went to visit her at work and took her a birthday gift.

Of course, yesterday was another fun day in the world of college football. The last few years I get more excited about college football than I do the NFL because the college kids just seem to care more and have more spark for the game. Here is S sporting her new hat!

We have season tickets to the Utes games, so my mom and R went together. It was a rainy day and I just didn't want to go stand in the rain. (I know, I'm a bad fan!) So, S and I went to my parents' house to watch it with my dad. The Utes beat Colorado State 59-6. Okay, beat is putting it mildly! We are 7-0 now and I have a feeling we are going to be BCS busters once again!

Transplantiversary!

Monday was 16 years since my kidney transplant. So mind boggling to type and think about that. The funny thing is, I was 11 at the time but felt much older. Looking back now I remember feeling much too old for a mere eleven. My fears and the weight on my back did not match my years. My peers were worried about fitting in at a new junior high, I was petrified I would never wake up or that I actually would wake up during surgery...somehow it didn't make sense and wasn't fair.

But, life isn't fair. I know that. And I had no idea the process would be the start of a new chapter in my life that included in it a daughter.

Although I was "lucky" and I use that term loosely, ha! However, we knew from the time I was about 16 months that one day I would need a transplant. I was blessed enough to be able to avoid dialysis because my mother would be donating her kidney to me and we were able to plan it all out. As much as you can plan an organ transplant in between 5th and 6th grades, right before Halloween.

{This photo was taken in September of 2008}

Did you know that in 2008, there were 16,520 kidney transplants performed and yet sadly there were still 82,364 still waiting on the transplant list. (This information was taken from the National Kidney Foundation's Website HERE. These numbers are unacceptable and break my heart. Honestly, I don't know where my next kidney will come from. It is a scary thought, so I try not to dwell on it. I know such sweet and inspirational women who are on the kidney transplant list this very moment. I wish more people would be willing to donate a kidney. Yes, it is a very difficult decision and it is not an easy surgery...but you are giving life.

While Cystinosis is not a kidney disease, the kidneys tend to fail first. It affects every organ in the body, but the kidneys are usually first to go. So many thought that after my transplant, I would be healthy and cured, which was not the case at all. I had so many complications in the years to follow that I became incredibly frustrated with the whole situation. I felt as though I traded one set of issues and problems for a new group of different ones.

The ironic thing is, with all the complications I have had in the last several years, my kidney function is wonderful! I was able to stop taking all of my anti-rejection medications and that is a very rare thing. It can be done, but only in desperate situations. I wonder why it worked in my life and I have not had any episodes of rejection. It doesn't scientifically make sense. That was one of my many worries throughout the pregnancy; that I would rejection my kidney because of the stress on my body and the fact my growing uterus was so close to it. (Just a side note, if you don't know, they place the newly transplanted kidney in the front of the abdomen as opposed to the back. I still have my two native kidneys in my back, although they are not functioning at all.) Needless to say that didn't happen and I truly consider it another miracle in the whole pregnancy adventure.

I'm a lucky girl.

Sookie's Fairy Garden Nursery

{If you are here from Kelly's Korner, Welcome! If you are not familiar with our miracle girl, you can read Sookie's Story HERE. Thanks so much for stopping by! If you are a new reader, drop me a line and introduce yourself! I love meeting new people and discovering new blogs to read.}

I didn't have the perfect nursery envisioned during my pregnancy, if you can believe that. I actually did not really have much ready when she arrived. I was so scared that if I had everything all finished, that we wouldn't get to bring her home. I know that should not have been the way I lived life, I should have had more faith, but honestly we had no idea how delivery would go, how she would react to any of it, or how my body would handle the stress. I have read accounts of losing babies and then having to come home and face the nursery all waiting for them and I just told myself I would not do that, because I couldn't. There was no way. But, she is doing so well now I am happy to keep adding here and there to it and tweaking it to fit her sweet little personality so perfectly.

This is the view from the doorway. And yes, those are books on the ground...she is 8 1/2 months, just keeping it real! ;)

Daddy's guitar takes up residence in the corner often, as she loves being serenaded to sleep with his precious and sometimes silly songs. Her bookshelf holds stuffed animals from loved ones, books, and her ever growing piggy bank collection. It is so important to me that she loves books, so I try to pick her up new ones all the time. My favorites to read to her are Dr. Seuss and Sandra Boynton. I hope my love for them transfers over to her.

The cards hanging from the line are just a taste of the many sweet ones we received when she came into this world. I had this idea for her room early on and it turned out just how I wanted it. I found the clips and line at Ikea.

I love her black crib too. I just adore pink and black together.

The framed picture is actually the article of her story that appeared in the Spring/Summer 2010 Cystinosis Research Network newsletter. R framed it for me and hung it up. I thought that was so sweet.

This is a vinyl decal on one of her walls. I had been so against vinyl decals, then R found this and it just made me sob, so of course I told him to get it! The article of her story is right below.

This little corner is so cute! I found the green vines, butterflies, daisy chain, and mushrooms at a craft store called Roberts. The two flower lamps are from Ikea.

This is the shelf above her changing table. I know I will treasure her little hand and feet prints when she is a big girl, I already do. They weren't done exactly when we brought her home, I waited awhile, but I think they are a sweet touch to her room. I found the little flower, owl, and mushroom containers at Target. Target is my happy place. ;)

Sookie's sweet and talented cousin Tahsha made her the wall hanging.

Of course, it isn't perfect and I still have a lot of work to do, but I adore the way it is now and will evolve as she gets bigger.

Pregnancy & Infant Loss Remembrance Day

Hug your babies tight. Cherish their laughter. Embrace the chaos. Love the messes they make. Be grateful for exhaustion, piles of laundry, and dirty diapers because somewhere out there is someone who is wishing they were dealing with all of that. Today is National Pregnancy/Infant Loss Remembrance Day.

A few hours ago, I wrote the above as a facebook status. I'm currently typing this with one hand, while holding little Miss Sookie, who will not sleep. While I try my best to only focus on the positive on my blog, I'm going to be brutally honest here for a minute; I'm having a really difficult time lately keeping up with my life. I knew things would be like this. I had a good idea my body would have a rough time after the pregnancy. Between all of my current health issues, some of which no one can figure out, and an 8 1/2 month old who is everywhere and now pulling herself up on any surface that will allow...well, I feel incredibly frazzled and stressed out most days. I should be used to it by now, but being in pain and not having an explanation is so emotionally draining and frustrating. However. Every single minute I know how lucky I am to have her, I know how many couples out there have lost a baby and are wishing for one to cuddle. Parenthood is not easy, but I realize I am blessed.

I've never lost an infant, but I know too many people who have. I wish I knew the "whys" behind it all. I spend a lot of time lately thinking about sweet Baby Cohen and Baby Ewan and how that could so easily be us. With the odds we were up against the entire pregnancy, with not only Sookie's well being, but my health as well, and that that horrible day 3 days before Christmas last year when we were told her left ventricle in her heart was measuring small. For a long time I tried to emotionally prepare both of us for the chance that we would have to deal with a tragedy, while still staying optimistic. There was so much unknown territory.

Even with the not so fun stuff going on lately, how frustrated and upset I am about my health, I know things could be worse. & days like today remind me of that. I think I doubled the amount of kisses I gave Sookie today.

Monsters & Manolos

I'm excited because my sweetie's newest app is in the iTunes store today! It is probably my favorite one out of the 11 apps that his company, Appdicted, has available. I am so proud of him for really just putting everything he has into this company and proving that when you want to make things happen, you can.

The app is called "Monster Meter" and it consists of four different scanning techniques to scan a room in order to make sure it is free of monsters. I think it is such a cute idea and such a help to parents who have children who are afraid that there are monsters in their rooms.

The best part is that you can adjust the settings to how you want the results to turn out. If they are scared to sleep in their bedroom, your exhausted self can make sure that the scan doesn't find any monsters at all. Everyone gets a good night of sleep and viola, your life is perfect. (Okay, that isn't guaranteed but it definitely helps all facets of our lives when we are well rested, no?) At the other end of the spectrum, if it is a room in your house where you don't necessarily want your kids, you can make sure monsters will turn up in that room. But don't worry, even when monsters are found, they are quite adorable.

I had a less than stellar day today heath wise; gallbladder and hip pain didn't want me to attack my to do list at all. I remind myself constantly that even if I don't get things crossed off my growing list, doesn't mean the day is wasted. I try to focus on what I did do, instead of everything that I didn't get done. You would think after 8 1/2 months of motherhood I would have realized by now that I will always go to bed with a million things left to accomplish. I captured some precious moments of Sookie throughout the day; we spent lots of time on the floor playing, reading, and of course crawling everywhere. I also taught her about Manolo Blahnik. He happened to be on 'The View' and it inspired me to teach her about gorgeous shoes. ;)

 

Is it wrong that if I home school her I am already trying to figure out how I can sneak in fashion lessons such as this, among history, reading, math, english, etc?

10.10.10

To celebrate 10/10/10...

In the last ten years, in no particular order, I:

1. Had my Make A Wish fulfilled at 17 (I was very close to the cut off age of 18) & met Hanson. That same weekend I saw 'Almost Famous' for the first time and felt such gratitude to Cameron Crowe for showcasing what it truly is to love music.

2. Went off all immunosuppressant medications for my kidney. Technically you are never supposed to do this after any kind of transplant because your body will reject the transplanted organ. Very rarely it can be done, but it is risky (& incredibly scary!) My team of pediatric nephrologists (I was still seen under pediatrics when I was 17) felt it was worth the risk because of other things, namely a horrific virus, I was dealing with. I am still off all my anti-rejection medications and have not had one single episode of rejection with my kidney. Knock on wood. I am extremely blessed in this aspect.

3. Said goodbye to my Grandma K very unexpectedly. She was so much of my world for so long.

4. Went to Amsterdam and Paris. It was incredible even though I was in a very bad place in my life.

5. Said goodbye to my one and only sister. There is a hole in my heart that will never be filled.

& 6 months later?

6. Met the love of my life. (I truly believe she had a hand in this, even though I think we would have found each other if she was still here. Make sense? Okay I know it doesn't, but for some reason it does in my heart ;)

7. Graduated from The University of Utah with my BS in Human Development and Family Studies with a Child Life emphasis

8. Found out I was pregnant (against all odds, logic, and reason) on June 9th, 2009. Which just happened to be Rory's 30th birthday. Talk about an amazing gift. ;)

9. Gave birth & said hello to Sookie Sierra, my miracle of miracles, on February 1st, 2010 at 1:53 p.m.

10. Received the marvelous news that Sookie does not have Cystinosis. I sobbed and sobbed tears of joy. I did not want my daughter to endure what I did while growing up. I want her to have a truly innocent childhood and simply enjoy being young. I knew in my head that she probably didn't have it, but with how tiny she was (and is) and with how much she pees, I was consumed with worry until the actual blood test. This just happened to be on R's birthday again. I have no idea what I am going to get him next year!


We had a fun afternoon with Glamma (my mom) today. It was very welcome as I had a rough night full of pain from a gallbladder attack. I thought Sookie looked so cute in her baby legs from cousins Derek and Anzana! I was so excited that they finally fit her. I took the photo below with my iPhone, but it was just too fun not to post.

We had a little bite to eat at Mimi's Cafe and then headed a few places to shop. Sookie was so well behaved while we ate and also at Babies R Us. She actually fell asleep on me while we were looking at clothes. Apparently she is bored with the idea of clothes now because she has so many?

I finally picked out a high chair for her.

I'm a little disappointed it didn't come with a basket in the back as I always have to distract her with a few toys while I am preparing her food and I wanted a nice convenient place to stash them, but I think we will make something work. I like that it is a little different and I loved the colors of yellows and grays after I convinced myself it was okay if she didn't have a pink one. Ha! ;)

Did you do anything special for 10/10/10?

October Goals 2010

My longtime friend Clare, who also happens to be very wise(besides being stunningly gorgeous and utterly fabulous), does goals of the month posts. I like them a lot. So, of course, I thought I would steal the idea from her. Thank you, thank you Clare.

• Read the above advice daily, sometimes multiple times a day if I need it. & really absorb it and LIVE it. 
• Make my own baby food for Sookie. Even if I fail, I must at least try this once. I know homemade baby food is so much healthier for her. & maybe I can get her to eat peas. Ha!
• Get organized.
• Realize I am an amazing mother; even with gallstones and possible hip fractures.*
• Don't waste energy on situations and/or people who do not deserve it.
• Go to bed earlier.
• Give myself a little me time to work on projects, read, write, daydream, nap.

* Well, now the news from my doctor is that I don't have hip fractures. Also, I need to have another ultrasound on my gallbladder to see if I really have a stone, or if it is just sludge in there. Is it morbid I was kind of hoping I did indeed have hip fractures, just to have an explanation for this pain? I have low bone density because of being in kidney failure all those years ago.

4 years

{A letter to my love}

If 4 years ago, some crazy fortune teller lady with purple hair (yes, of course she would have purple hair) had come up to me and told me where we would be today, I would have laughed and laughed and then probably laughed some more. If she would have said I would be spending my days raising our daughter and you would be working your little creative heart out developing iPhone apps for Appdicted, I would probably have asked her, "and what alternate universe is this?" Four years ago all that is a reality now seemed so far away, but I caught a glimpse of just how possible it all actually was. And that is probably why I was so scared to make that leap of faith with you.

{This photo quality is lacking, but I adore this one. It was our first Christmas together in 2006}

I still remember the sweet words you wrote in the first Christmas card you ever gave me, just 3 short months after we first met. I knew then that I was going to spend forever with you. We have been through so many lifetimes worth of struggles in the past 4 years, that it is a whirlwind to think about and attempt to process it all.

We have learned so much from each other over these past 4 years and I am grateful for every embrace, lesson, every fight, every good day, every single day, even the bad ones because it was the path that was leading us to where we are now. Our little family that I have always wanted, since the days of playing with my cabbage patch dolls, and yet never thought would come to fruition. 

You stuck with me through the last tough semesters when I was nearly ready to give up on my degree and college education. I don't know how we managed through the stress of all of this in our tiny one bedroom apartment. I also don't know why you chose to purchase Rockband right around the time of my very last finals. ;)

{We look like kids! May 2008}

  

We have done a lot of tailgating in the past 4 years and have been to many Utes football games.

We've been on lots of fun trips over the past 4 years; New York multiple times, San Antonio, Vegas, Jackson Hole.

It seems like yesterday I was worrying about the very real truth that we would never have biological children. I remember one night when we were driving to my parents, I told you how much it made my heart ache that my parents would never have grandchildren with their genes.

And look at us now. I know pregnancy is hard on a couple, even when everything is "normal" and things turn out wonderfully in the end. I was such a ball of stress and so worried, and yet even up against our very real concerns and logical fears, you always had optimism; even on the darkest days.

I know this summer has been a major adjustment for both of us, but I also know we are doing a wonderful job and our daughter is full of joy and she knows with every ounce of her being how much she is loved.

Thank you for not paying for my Starbucks the first time we met. Thank you for owning 'Tremors'. Thank you for apogee M&M's. Thank you for strawberry margaritas in a restaurant in Texas where Christmas exploded and understanding the importance of purchasing "The Deathly Hallows" exactly at midnight. Thank you for ALF marathons and a second date that lasted a long time. Thank you for your contagious optimism. Thank you for loving to shop as much as I do, and yet loving football as well.

& thank you for making a miracle with me.

Wordless Wednesday (with a few words)

I'm smothering this baby doll in kisses because I spent the morning at the doctor. I'm actually hopeful about everything that is going on even though I do have at least one gallstone and now we are trying to figure out if I have fractures in my hips. Never a dull moment around here. ;)

8 months!

Miss Sookie Sierra, can you believe you are 8 months old? It is simply amazing. You are everywhere these days and Mama has to watch you like a hawk. I treasure every second of this time but let's be real for a second, it can be a struggle as well. I have to remind myself multiple times a day that you won't remember if the house is spotless, but reading with you and playing with you will be so evident in your blossoming personality and your exquisite development I get to be a part of every single day. It is precious to me how interested you are in finding out how the world works and what every little thing does, feels like, sounds like, or tastes like.

I realize as your Mama I am completely bias of your beauty. However, we live in the land of people with 10 million children, and yet when we are out and about I am always stopped by strangers who comment on how cute you are. You are also very friendly to everyone and love to flash smiles at people you don't know.

You absolutely love being outside. You love all things that have to do with nature. Poppa often takes you outside to pick flowers for me. You encountered your first praying mantis the other day and you were tickled with joy. You love to go on walks with Jack and I. These days you are crawling everywhere. You think Jack's water dish is a new toy. You can pull yourself up in your crib and Glamma and Poppa's family room coffee table. You can hold your bottle all by yourself now. (I joke you don't need me anymore and are ready to move out on your own. Haha!) You clap your feet a lot, it is the cutest thing ever. Glamma taught you how to do paddycake; you even try to sing as you clap your hands. You have 4 new teeth on top that decided to all break through at once, you are such a tough girl! (You had to be to get here, right? :)

Last month you went to the fair for the first time. You also went to the circus for the first time. I was anxious about how you would react and knew there was a good possibility you would not like it and we would have to leave early. But, you had so much fun! I think you actually enjoyed all the noise, and then when you were over it, you simply decided to take a nap.

You still love to eat. You are doing great on your veggies; tomatoes and squash seem to be your favorites right now. Mama needs to learn how to make baby food though because I know it would be so much healthier for you! And of course you deserve only the best. You love books; specifically all of yours that have textures to explore.

Your personality just astounds me every minute; it is so big and bold already! You are so much fun and teach me new lessons multiple times a day.

Sookie's Story

{I wanted to post this because sweet Sookie is 8 months old today! A little background information; I was 15 months when I was diagnosed with Cystinosis. I was 11 years old when I had my kidney transplant, my amazing mother was the donor. I am 27 now, was 26 when I gave birth. The following appeared in the Spring/Summer 2010 Cystinosis Research Network newsletter. After a lot of thought, I left out everything about her heart. I felt it would have made the piece triple the length, I wasnt ready to revisit that situation again emotionaly, as I wrote this in April, and honestly, I didn't want anyone to think Cystinosis affected her heart in any way or form, because it didn't. )

Some of the most profound lessons I have learned in life came from little friends younger than 6 years old. But, I always pictured my future involving an adoption.

On a magical evening last June, one of my lifelong dreams started to come to fruition; and then I panicked. I needed to find a perinatologist (an obstetrician who has received further specialized training in high risk pregnancies) whom I trusted with not only my life, but the life of my unborn child as well. I would love to say I was a bouncing ball of sunshine and positivity through the entire pregnancy, but in truth I wasn’t. There were many unknowns. It was complicated, thorny, uncharted territory. I would be walking a path that very few have conquered. I knew the risks. I knew the reality of one of us not surviving, or losing my transplanted kidney. It was by far the most difficult journey of my life, and not to play the victim card, but there have been some jagged ones. With all of that being said, I would do it all again in a heartbeat; with a little bit more optimism sprinkled throughout.

At my first appointment, they said I was barely five weeks along. I felt it was imperative to be followed closely from the very beginning. Synthroid was the only medication I took during the pregnancy, however I was only taking that and Cystagon before. Synthroid is considered safe during pregnancy. I had my kidney transplant in October of 1994, but I am no longer on any anti-rejection drugs. I followed Dr. Gahl’s recommendation to stop taking Cystagon for the duration of the pregnancy, but I did continue to use the cysteamine eye drops as he assured me that not enough of the cysteamine would reach the blood to be of concern.

It’s strange how quickly your life is divided up into a week at a time. It is eerie how just one tiny week can feel like a marathon; emotionally, physically, and mentally. Each and every Thursday I would wake up, basking in the notion she grew one more week safely inside of my womb. At the beginning of it all, I made a goal to make it to thirty two weeks. It wasn’t ideal, but considering my kidney and being at risk for preeclampsia, among other things; I felt it was even a little too optimistic. The ironic thing is, a day after that crucial 32 weeks I spent the night in labor and delivery because it appeared for a little while that I was going into labor. It turned out to be a false alarm, but things were definitely interesting from there on out.

One of the most pivotal moments of my pregnancy was an afternoon when I first started to agonize over the decision to get the H1N1 vaccine. I was smack in the midst of one of my biweekly meltdowns, knowing that no matter what decision we made, it would be the wrong one. I can’t pinpoint exactly what week of the pregnancy I was in, but I knew Sookie was just barely past that viable week 24. I was overwhelmed with the feeling that she had made it this far, but the threat of losing her to H1N1 was a concrete one. That was when Rory held me close and said to me, “She’s going to make it all the way to our arms.” I can’t explain it but that simple statement made it real and possible and it made Sookie unstoppable.

Early on in the pregnancy, I decided to donate the placenta for research purposes. Funny thing is, it actually ended up causing us to have to delay the birth by a few days because of the logistics of getting it in the mail and to San Diego in a timely manner. Being a trailblazer is not always fun!

Even though everything worked out in the end, it was not easy. I had extra doctor appointments, multiple ultrasounds, and non stress tests twice a week starting at 32 weeks. The non stress tests were simply precautionary, and were to make sure she was not in distress. Because of my health history I was at risk for many things, including premature labor, stillbirth, and preeclampsia, just to name a few. There were no major complications, but it did take a remarkable toll on my body. My thyroid levels didn’t want to balance. My dose of Synthroid had to be adjusted constantly. I was exhausted what felt like the entire pregnancy, but all things considered I know I am blessed. Despite the extreme fatigue, I was able to work part time as a nanny right up until 32 weeks when I was put on bed rest.

As the third trimester went on, my doctor explained to me that he was more worried about my health than Sookie’s. I had a tough time with the whole idea of being induced and would never have agreed to it if it wasn’t medically necessary. I am like many people with a chronic disease who feel the need to be in control of every little thing. Even though I have had to rely on modern medicine for many things in my life, I also feel that sometimes letting nature do its thing is the best way to go. It was as if my head knew it was indeed a medical necessity not to push the pregnancy any further, but my heart was best friends with my inner hippie who just kept insisting things could happen on their own. I was most apprehensive about the birth, the side effects and risks of the induction drugs and just never feeling completely comfortable with the notion of forcing my body and the baby to both do something neither of us was ready for.

I felt like I was given miracles on top of miracles throughout this adventure. First, there is the fact that we were able to conceive at all. Then, that we made it to 12 weeks and after that the viable 24 weeks. And then to make it to 37 weeks, which is considered full term, I was in complete shock! In addition, avoiding pre-eclampsia, and my kidney escaped unscathed? Well, that was just icing on the cake!

Induction is a long process. I was prepared for it to take 24 hours. We went to the hospital at 5:30 p.m. on Sunday. At 1:53 on a beautiful Monday afternoon of February's first day in 2010, Sookie came into this world. I held her hand while she was placed on my tummy and Rory cut the cord. Her cries were so loud and full of life; the most precious sound I've ever heard or will ever hear.

It has been tricky to put this experience into a neat little package of words. I wanted this overall chapter of our story to convey the hope that is so tangible, but also the reality that none of it was easy or without risk. I was tremendously lucky, but I also had superb kidney function before the pregnancy. I truly believe that fact was a colossal blessing and key to this whole voyage working out the way it did. I wake up every day and continuously marvel in the beauty and sheer phenomenon that is Sookie.