One day i came home from work and Joy said: I found the perfect song for our next Willow video.
Spring has been really fun so far, and its not done yet. I just could not resist putting this together, so here it is, enjoy.
Jan.1,2011Gratitude has been on my mind and heart a lot lately. For the past few months i have been experiencing moments of deep gratitude at totally random times. I feel tremendous gratitude for all of our family and friends that support us in so many different ways. I feel so grateful that i get to live my life every day, with intention, fun, love, resourcefulness, and excitement. The list goes on and on for all the things i am grateful for. It’s kind of blizzard to me that i am experiencing so many of these moments, I guess is just the mind trying to not feel it all 
When i stop to think about all these moments one thing is clear to me, my life and the life of my family would not be as amazing as it is without all the people who have made an impact on us.
Willow is an awesome little being, and you all have had an impact on her already.
So here is the 15 month snapshot of her life so far, i hope you enjoy it, and know that when you watch this you are watching a part of you through our little Willow.
Thanks so much, and may this year bring you unlimited gratitude and love.
I have been waiting a couple of months in order to do this update.
In late August when we flew to El Salvador to visit family we noticed that Willow was bruising easily. She had bruises on her legs, and her back. We first chucked it up to normal baby learning to walk and so froth, but when they kept on showing up, in conjunction with petechial bruising we knew something was not quite right.
It was now September and we took her to see her pediatrician and he immediately ordered blood work. The next 16 hours were really nuts, specially because of Joy’s history and how much we know about how really bad things exhibit themselves our minds really took us on a insane journey. The next day we got the results, which ruled out all the really bad things, cancers and other baddies.
We then got an appointment at a pediatric hematologist specialist. She quickly diagnosed her with ITP. In short Willow’s platelets had dropped below normal levels, normal is somewhere in the 50,000 to 100,000 range, Willow’s first test had her at 19,000 and her next test at 16,000. There was no treatment needed at these levels, we simply needed to make sure we didn’t expose Willow to any cuts/head bonks so that we can avoid internal bleeding and so forth.
At the end of the month her platelet count dropped to 8,000 which means that she needed an treatment right away at the hospital. We took her in so that she could get a infusion which is the recommended treatment (IVIG). It was an overnight stay, where she had to get a IV put in. Now putting in a IV into a 1 year old is quite the challenge, and it was one of the hardest things I have ever had to do. Willow wanted no part of it, and we had to hold her down while the nurses did their thing, imagine 3 adults holding Willow down, while another threads a neelde into her tiny vein.
The next morning Willow’s platelets had come back up to 56,000 so we went home and had her birthday party that weekend. The treatment is effective for about 6-8 weeks, at which point we need to start testing again to see where her platelets are at. The time has come, and her platelets have dropped and risen again. The latest test which we got results for today had her at 51,000, so we good right now, but we have to keep on testing. We are working again with our hematologist and are going to seek out a second opining at a specialty center at Stanford.
We have a treatment path laid out and we are working closely with our doctors to make sure we do all that is possible to get our baby girl back up to 100% as soon as possible. Looking at Willow you can’t tell there is anything out of order, she is as vibrant as ever, as funny as ever, and eats just as much as ever. The one thing we must keep an eye for it her hurting herself, bonking her head, so this is a challenge, since at 14 months she is just running around as much as she can.
We chose to keep this information fairly close to home this time simply because it was a lot to deal with. Now we are at place where we wanted to share it more widely.
Here are some photos of her hospital stay.
This Tuesday December 2nd will be the 10 week marker with our little Willow Nerys. Our little nugget is sure full of life and awe! Each day brings a multitude of precious moments that light up the our world. We are fortunate for many things, one of which is to be alive right now, when we have all these techy goodies to aid us in trying to capture these moments. So here is another little movie of our nugget bug.
2 weeks, or so, and time has little meaning sorta. We have been enjoying our time with Willow. She is an amazing little human, and its easy to just spend hours looking at her, enjoying this little being. It is awesome to feel to loved, and supported by everyone, thanks again!
Here are some photos of the past week or so.
We also had our first outing into Golden Gate park, just a block from our home. It was a nice day, a tad chilly but perfect. Talk about a perspective change!!! the world just looks a tad different now, walking down this path with my wife and daughter and parents was awesome! Through this magnificent experience it feels like i have grabbed onto the live wire of life!
One week ago Willow Nerys was birthed at home by my amazing wife Joy. We embarked together on a journey of family almost 3 years ago, it has taken determination, courage, hope, and love, as well as a huge number of our friends, family and strangers holding us, supporting us, loving us, and rooting for us. To each of you, thank you!
Willow was born at home in a 4.5 hour labor sprint, that flew by in a wink of an eye. She entered our home via warm birth tub, where Joy had labored most of those 4.5 hours. Willow weighed in at 7lbs and measured 21”, and is healthy and beautiful. Loved ones and our midwives have been taking excellent care of us through out this entire journey, and it simply rocks! We have been staying home, and basking in what i call the “Baby bubble”
Joy is the most amazing woman! Seeing her as she birthed life, has been the most deeply moving part of my life. I am so proud of her, so in love with her, and so ready to continue to deepen our love/life together for ever.
Words just can’t capture the vastness of the experience for us, best I can do right now is put together a short video from the last week.
This Tuesday we go to do the second belly cast. I love doing these, so much fun, feel like a kid at playtime. Joy is totally sexy pregnant (and non pregnant too).
We are just over the 38 week mark now. The midwife visit was excellent on Friday, all is going well, very well as a matter of fact. We took the time to fill up the birth tub, which was a interesting endeavor, getting 150 gallons of hot water into this thing took a while, and it needed to be kitty proofed, last thing i wanted to wake up to was a kitty pool.
Everything is going so well, its a little mind blowing. I am so grateful to all of our friends that continue to be so generous with their time, and baby goods. This kid is coming into this world so loved and cared for! I am specially grateful to my wife, she is just amazing! Carrying around our little one, all uncomfortable and all. She is the best!
Into our 16th week now, and things are going very well. We saw our midwives last Monday and all was good. The belly is the right size for 16 weeks! Joy is very glad that all the nausea and general “yuk” of the first trimester are done with, and she has been feeling much better for a while now.
Last weekend she felt this little one move, as she puts it “I felt a little fluttery movement”. The next day I put my hand one her belly as she noted that she could feel something moving again. I did feel movement, we both looked at each other with a “that could be a the little one, or something else”. Its so exciting to be even entertain the notion that we felt our child move for the first time. With more time the movements i am sure will get more pronounced. We have been having a lot of fun coming up with names, we have settled on none yet, and i am sure we will come to a great set of names by the time the the little one arrives.
In the next few weeks we will have one more ultrasound to check out that all is going well. We have chosen to not find out the gender of the itty bit till he/she joins us out here.
All is very exciting, and it seems that each week is passing with extraordinary speed! very soon we will have a new video camera, will post a video once i get it all put together.
Today is a day set a side to give thanks in the US. So I take this opportunity to give thanks to everyone that has given so much to our journey. Joy and I are truly fortunate to have so many people we know and don’t know offer so much to us as we move closer to creating family. Each of you that has sent an email or called us up, or asked how we are doing, or listened to us, and just read our posts, thanks! you make a huge difference in our lives. I am thankful for Maeapple and Becky for being such amazing generous sisters and giving so much to Joy, our dreams could not come true with out you both. I am thankful that we don’t have to walk this path alone and have the luxury of our friends and family.
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