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Hey there! I apologize it has taken me so long to write. Life has been crazy finding my place with a newborn, in October our town was engulfed in flames, dealing with Scarlett’s breathing problems and just when we thought we were closing the door on “fires” our apartment furnace caught fire causing us to be emergency transferred to another unit just two days before we left for Christmas vacation (thankfully our possessions were spared in both fires). All that to say we have seen God’s hand truly be upon our little family the past five months.
I can’t say thank you enough for the response of love and support after my last post where Zack and I told you guys that our precious Scarlett Belle indeed has Kabuki Syndrome, just like myself. At the time I wrote the letter to Scarlett, she was only a month old, and we hadn’t even met with the genetics team in the city. We really didn’t know what the future would hold for our girl. At that point every test and exam came back as completely normal. If I am being honest it really took me a while after writing “Dear Scarlett” to be ok with her diagnoses. I kept blaming myself for giving her this syndrome. As I said in my letter to her I wanted to spare my sweet baby. I would ponder what the specialist/doctors were thinking meeting us knowing not only did my daughter have Kabuki Syndrome, but I had it myself. There were several dark months that I struggled with her diagnoses. My precious husband has walked me through this season always telling me what a special gift we have in Scarlett and that as long as she is happy and healthy what more could we ask for.
Now, for the update on our Scarly girl. I’ve had many messages recently asking about how she is doing. If you follow myself and my husband on social media, you know that we have been dealing with her being in and out of the hospital. When Scarlett was a month and half she started what we have been calling her breathing episodes. She’ll be completely fine and then all of a sudden, she goes completely limp, white as a ghost and will not breath for upwards of a minute. It’s been completely horrifying to say the least. At this point she has had a total of six episodes (that we know of), two hospital stays, 2 EEgs, 2 Echos, a MRI, an ambulance ride and more that I am not even remembering. All testing at this point has not caught anything. At this point the doctors are thinking they are seizures, we do have a longer EEG that will be done in the city to try and see if we can capture an event or see if there may be tendencies in her brain for seizures. We are very blessed to be borrowing an angel care monitor system, from Zackariah’s cousins, that has been able to give us some peace at night. Other than the breathing episodes and some minor things, she’s a very happy baby. She loves to smile, recently has found her voice and her giggle. She is a daddy’s girl through and through. Loves all things Disney which makes mama’s heart soooo unbelievably happy. :) Zackariah and I really couldn’t ask for a sweeter baby girl!
As you can see you are reading this entry on an entirely new blog. After much discussion Zackariah and I have decided to start a new blog. Kabuki Unfiltered has such a special place in my heart, it was there where I introduce my story to you guys. It was there where I found my voice and it was there I found out I was never going to walk alone in this journey with Kabuki Syndrome. Now that I have found love, gotten married and had a baby I felt that along with that comes a new chapter. Kabuki Family is a combined website that will feature my blog entries (and I am told you may even see a couple entries from my husband), my husband’s gluten free recipes, a special blog series called “Dear Scarlett” for letters for Scarlett as we navigate her journey with Kabuki and maybe some pictures and videos. But don’t worry you will still be able to read most of the past blog entries that were on Kabuki Unfiltered. They will be posted here on this site. With this new site I would love to hear what you guys would like to hear about (more blog posts, videos, recipes, etc give us your ideas!).
We are excited for this new season/chapter in our life’s. We have exciting, big things on the horizon that we can’t wait to share with you guys. In fact, we are going to tell you one of biggest things right now.
The Brownell’s are moving to Washington next month! Yes, you read that right we are packing up once again and moving but this time it won’t be across our complex. We mentioned earlier how we are were visiting Zackariah’s family during Christmas. An opportunity arose while we were there for Zackariah to apply for a job back in the airlines. Many of you know that when Zackariah and I meet he was working for the airlines and that’s how we made the long-distance relationship work surprisingly well. Due to a car accident Zackariah had to leave his position at the airlines just months before our wedding. We really didn’t know how God was going to provided but we trusted Him. God opened a door for him to take the media director at our church. Over the next year and half Zackariah realized how much he missed working for the airlines and the ability to travel as much as he used too. When we learned about the position becoming available at Zackariah’s old airport and how it would work with his back, we decided it was too good not to take the opportunity to pray about it. Every move we made in the process seemed like an open door. Zackariah was offered the job this week and he accepted it. Scarlett and I are so proud of our #1 guy, these past few weeks have been crazy, not knowing if he would actually get the job. He has worked so incredibly hard and to be given an opportunity to go back to what he loves doing is so wonderful to see. We are so thrilled for this new season for our little family. With that being said it is bittersweet to be leaving Sonoma County. I spent the last 20 years here. While it has been my dream to move from here, it is also sad to leave a place that holds so many beautiful memories. My family still lives here, and we’ll be visiting often. Sonoma County friends, please come visit us in Washington!
As I am sitting here wrapping up this blog I can only laugh. I totally didn’t intend for this entry to be a life update, but this way has seemed to be the easiest way to update you all about everything especially with our latest adventure coming up so quickly. I promise the other entries will be much more mellow for The Brownell’s (at least that is our prayer!). Thank you for walking along side us the last few months wither it be in person or virtually. We love you guys and are so thankful for each and every one of you all!
All my love,