Thirteen!

 Happy birthday Waverly!! 

Waverly is 13 today!! When i started this blog many years ago, I honestly never thought we’d be here, celebrating 13 birthdays now with our sweet Waverly! God has been so gracious and kind. Yes, it has been hard, but He always has been and always will be so so good! I know I haven’t kept up with this blog space at all, but in case anyone does still occasionally check in, I just wanted to share this milestone! 

She still loves balloons and got many for her special day! 

I even got a little smirky grin from her! 

This was my last night rocking her as a 12-year-old. She still loves to rock and snuggle and we do that most nights! 

It’s been a while

 My apologies for the silence on here for years now. I’m not sure if anyone even still checks the blog, but just in case, I figured I’d share a few updated photos of our ELEVEN-year-old! Waverly turned 11 this past May (incredible!!). She’s doing well and has been healthy and happy. Enjoy some photos from her birthday, and 4th of July. 

Apologies...

I need to ask for forgiveness. It has been years (yikes!!) since I’ve updated here. And I occasionally get concerned messages asking for updates. I am happy to say that Waverly is doing well! She turned 9 (!!!) this past May, and enjoyed going to the beach in June for the first time in 8 years! In September 2018 she got a tracheotomy, which has been a huge help in keeping her healthy and helping us care for her at home. There is so much more I could say (years worth!), but for now, I’ll leave it at this and hope it posts ok, and alleviates concerns and brings smiles to all those who are still faithful to check the blog of an unfaithful blogger! Much love to all! 

Matching sisters

From July 2015. Matching sisters. LOVE. 

Happy Birthday Waverly!

Waverly is SIX years old today! We are so so thankful for our sweet girl, and SO SO thankful for our good Father, Who has blessed us with six years with her! We had a small family celebration this year, as opposed to some of the larger parties we've had in the past. We enjoyed the low-key time celebrating her. However, we DO have a big birthday SURPRISE to share! 

As you may imagine, Waverly is hard to buy gifts for. She doesn't need much in the way of toys or clothes. And the things she does need tend to be rather, well, large and costly. For some time now, we've needed a wheelchair van for her. But, as many of you know with the recent mold remediation and issues we had come up, we've been set back from being able to pursue that. So, a few friends encouraged us to consider a tshirt campaign to help raise some funds for that. We are SO excited to be launching it TODAY, on her BIRTHDAY! Here is the link: 

https://www.bonfire.com/wheels-for-waverly/
Please, do not feel obligated at all to buy. It's just a fun way we thought to help raise some funds for a van for her, as well as to show our love for her AND to share her story (HIS story) with others! We are also super excited to pass on the blessing, as we will donate a portion of the proceeds to the Addy Grace Foundation as they raise money for an all-abilities playground here locally. We can't think of a better thing to help support, as it would be a dream to be able to see Waverly playing alongside her siblings on a playground! So, click on the link to see the various shirt options available!
And, at the expense of being long-winded, let me explain the shirt design. I was stumped at what to put on her shirt. In fact, as of yesterday afternoon, I had all but decided to just scrap the idea all together. But then, as we were getting her ready for bed, I saw her little wooden plaque with this verse on it. And it hit me: THIS is it. This communicates God's work in her life, the HOPE that we have that she WILL be healed and whole one sweet day in the presence of Jesus. So, we will wear these shirts to tell others of our sweet girl and of the promise we have in Him. <3 Thank you for loving on our sweet girl today as we celebrate the MIRACLE that turning 6 is!

Too much to update

So, come to find out, the Blogger app I had been using is no longer available on the iPhone and that's why it kept crashing when I would try to update. As a result, it's been months! No promises on when pics will be uploaded (because I know that's the most fun!), but for now, here's an update.

What a few months it has been... the last update mentioned continued struggle with seizures and a new treatment for her recurring UTIs. Shortly after that update, we had a major discovery. We found out our home was affected by MOLD. We immediately got Waverly out of the house, as we suspected it was a big culprit in making her seizures so hard to control. Unfortunately, within a couple days, she ended up in the hospital from status epileptus (seizures that won't stop). She was in the hospital for several days as a result. When she was released, we remained out of our house, as we then had to pursue mold remediation. We ended up being out of our home for 6 weeks, over Christmas, while the mold was being removed and our home made safe. We now have a $20,000 bill to pay for the work, and our home still needs more work/repairs as a result.

It's been hard. So hard. The house we bought pretty much FOR our child with special needs ended up being very unsafe for her (and all of us). Thankfully, everyone else had been mostly ok.  I seem to be the one who was most affected with my health by terrible migraines and neurological symptoms. (I had an MRI in November to check for brain tumor and MS because of my symptoms. Yikes! Thankfully, that was clear, and once we discovered the mold, assume that my issues were caused by that.)

Waverly still has continued to struggle with seizures and other issues. She ended up very anemic a couple of weeks ago and had to be hospitalized for a blood transfusion. An iron supplement lead to major crying and discomfort for days on end. We are still trying to figure out how to best help her.

And most recently, we had our well pump go out and then discovered there's a leak in the piping and therefore need to run all new pipes from the well to thour house.

And these are just the highlights of the trials we've had the past few months.

Y'all, it's been tough. So tough. But God is good. So good. We have a sweet friend who set up a Go Fund Me page for us. Because, aa much as we resisted, we realized people truly wanted to help us, and we realized we just can't do this all on our own. Feel free to share with others. We are praying. We are trusting. We are hopeful for the future. But we are weary. And ready for a little break. We know our blessings flow, more than we could ever deserve.

https://www.gofundme.com/help-the-sink-family

Apologies

I am so sorry it's been so silent on here! The Blogger app on my phone keeps crashing when I try to write a post, and truthfully, I am rarely on the computer these days! (The benefits and vices of technology literally at our fingertips on our phones!) And since I prefer to do posts with photos, and all my photos are on the phone.... Well, you get the point.

Also, there's not a lot new going on to update about as far as daily stuff. Waverly continues to struggle with seizures, and we don't have them well controlled still. But we are managing ok with them. It would be great to see her go an entire day or even an entire week without one, though!

We have been doing gentamyacin bladder washes every other night, and that seems to have helped to keep her UTIs at bay a little bit. So we are thankful for that.

In the meantime, I have tons of fun, cute pics to post of her. I will keep trying to see if the app will work, or see if I can get pics on the computer and then post! Thanks, as always, for your prayers!