Here we go

It’s been a wonderful summer full of so many special memories and blessings for our family, but it has given me little time to write. My world has been so focused on Adeline and spending quality time with our family, that is wasn’t until last week when I received an email reminding me that my web address was renewed for another year, that it was almost a push to get me to write again. Obviously, I miss all of you and sharing our updates and travels with you, but the days pass so fast I can hardly find the time to even sit down. I am sure some of you can relate. Now, let’s dive in…

To all those following along and our praying friends and family, I have an update to share. I am at a loss as I write this, but I know prayer is a powerful thing and support from all of you means the world. Adeline has been out of her brace during the day time (except naps and nights) for the past four weeks. We had a follow-up appointment at the end of the month in hopes she would be brace-free entirely, but I felt like taking her in for a check-up yesterday to be sure things were looking ok. We had an x-ray performed yesterday and her hip doesn’t look right, something is going on. Unfortunately, it looks like it isn’t in the right position anymore. Looking at the x-ray was like a punch in the gut, like not on my radar, out of left field kind of news. The only real option we have at this point is to perform another arthrogram under anesthesia at the hospital and see what is going on. And it needs to happen soon.

I will keep this brief, but we basically need to mentally, physically, emotionally prepare for Adeline to come out of that in another body cast. This x-ray could be a total fluke, which I am praying for, but it could also mean something funky is going on and the hip needs to be adjusted again this time with a closed reduction and positioned in the right way and held in a cast for the next several months. There’s also the possibility of having another open operation that same day, but there are a lot of unknowns. She has amazing mobility and in her physical exam her hips are looking perfect – full range of motion, good angles, and her legs are the same length, etc. – but you can never be too sure and we don’t want to take any chances. In the meantime she will be back in the brace as much as possible.

This was heavy news to hear and breaks my heart. She has been army crawling all over our house SO FAST, finally figured out the normal crawling position and how to pull herself up, so this feels like my worst nightmare, but she is a fighter, likes to keep us on our toes and surprises us with everything she does.

In the next couple weeks if you think about it, please say a prayer for our little girl, that all this runs smoothly and that this is a false alarm. I cannot imagine going through all of this again, but we will do what we need to for Adeline to be ok. Thanks to each of you for loving us so!

 

Next Up: Cast Change

Sandy toes, the sound of the ocean waves, chasing wild bunnies and exploring Sea Island had us spoiled last week. It seems, by the day, Adeline gets more and more happy, and she was all smiles as we adventured to a new place. It is such a joy watching her grow up each day and to be able to experience life through the eyes of a child.

Now we are back to reality on this Monday and living in week 8 of the spica cast. Week 8 means we are ready for her next operation. On Wednesday, Adeline will have her “cast-change” procedure. As in the past, she will be put under anesthesia, which means no eating after midnight tomorrow, we will arrive to the hospital and they will take her back for about 1.5 hours to remove her current spica cast (thankfully…it needs to be thrown out!), insert die into her hip and check the stability and placement via an MRI (called an arthrogram). Likely from there they will bathe her (yay!) and place her into a new spica cast for an additional 8 weeks. If we receive a really positive report and the hip looks good, there is a slight chance she will graduate to the brace (called a rhino brace) instead of the cast, but we aren’t banking on that. I am holding on to a little hope, but do not want to be disappointed.

We are looking forward to this operation to be able to see the progress we have made up to this point. This is a big next step, and after this appointment we will have a better understanding of what is ahead in Adeline’s journey. She continues to amaze me, our brave little girl. She has been through so much up to this point, but we are thankful for a God who has this under control and is watching over her every step of the way.

We will share an update later this week!

Much love,
Anna

Halfway!

As I sit here and write this post, I can’t possibly believe we are halfway through with Adeline’s first cast! How has it already been 4-weeks? Our happy girl is not letting the cast slow her down. We spend our days outside, on her tummy spinning in circles, sitting on the back porch in her spica table, and she is constantly smiling day and night. She is growing so fast too (how do I almost have a 10 month old?!). The cast on her left side use to go down to her ankle, and you can see how her leg has grown because her ankle is fully visible now. Time slow down!

We go in on May 8 for Adeline’s “cast change.” We were told it is very likely that she will be put into a second cast for an additional 8-weeks, but they won’t know until she is put under anesthesia and they can check her hip stability. I have to admit I was a little disappointed. I wanted to hear that the progress was so good up until this point that she would be cast-free and would graduate to the brace. But, I am thankful for her doctor and his conservative approach because after coming this far I certainly wouldn’t want to rush things.

In the meantime, Adeline has warmed up to her carseat so we can go for drives to get out and about, grocery shop and run errands, which has been wonderful. We have had lots of visitors, which we just love, and we are celebrating that this journey has been much better than we thought.

We are gearing up for the weekend and hoping for some nice weather to get outside. Hope you have fun plans too!

Love,
Anna

A 3-week Update

We’ve had a super positive week and tomorrow we will officially be 3 weeks into Adeline’s spica cast treatment. The time is moving along rather quickly, which as I have mentioned before is great for my countdown to Adeline’s healthy hips, but I am also trying to pause and enjoy these days as they happen because everyday is something new and she’s only this age once.

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This past Monday we met with Adeline’s surgeon and had a follow-up x-ray since having her open reduction surgery on March 15. The results were great! He was very pleased with the positioning of her hip and it is in place in the socket as it should be. Now we wait on the socket to form and bone growth to happen in order for her left hip to become stable. At this point there was no bone growth (which isn’t abnormal), but over the next few weeks we hope that will happen. Depending upon how that growth happens, and how quickly it happens, will guide our next steps of treatment.

We go back to Children’s Healthcare of Atlanta in mid-May for her next visit (at 8 weeks). At that time she will be put under anesthesia, the cast will be removed, and the doctor will perform an arthrogram on her hip. Dye is injected into the joint to provide an image of the tissues in the joint to see how her hip (the ball and socket) is developing. We were told that it is very likely she will be placed into another cast at that visit for an additional 8 weeks before being placed into a brace. At this point, the cast for 8 more weeks is what we are mentally preparing for. Of course I would love for her to be cast-free at the 8 week mark, but we have come this far I sure don’t want to rush it, and her doctor knows best. If things are looking good and the cast comes off at our next visit in May, I would rather just be pleasantly surprised.

In the meantime as we await her next visit, we are making the most of this time and enjoying all the walks, tummy time, and spica table fun possible. Also, being able to hold Adeline again this week has made this the happiest week, and she agrees. She has had a permanent smile on her face since Monday bringing me so much joy.

Her personality is contagious and lights up the room. I still can’t believe I get to be her mommy. I am so thankful God chose me. (Although I always imagined her calling me “mama”, she hasn’t figured out the “m” yet and thinks I am her “yaya”. Her new thing is yelling for “yaya” repeatedly over the monitor at night after we put her down for bed. It makes us laugh.).

Until next time!
Anna

Small Victories

We made it to 2 weeks! Small victories. We meet with Adeline’s surgeon on Monday to x-ray Adeline, go over progress and ensure her hip has not moved out of the socket. Thinking about that appointment makes me so nervous. I pray that we hear good news. If all looks good, Adeline can start sitting up again with support and the everyday will be much easier. We have her spica table, basically a table that she can sit and play at that supports her cast, ready for her when we get the green light! We hear it is a game changer. I cannot wait to put it to good use.

We are still figuring out sleep. Since she came off her medications sleep hasn’t been our friend. Adeline isn’t a fan of her limitations with the cast and she isn’t pleased that she can’t roll to her tummy. We’ve tried pillows, no pillows, rolled blankets, no blankets, her crib, our bed, and everything in between. Hopefully we can all get some sleep one of these days!

This journey is not easy, but we are getting through it one day at a time. Sometimes it feels like a minute at a time, but it helps to remind ourselves that this is all for her so that she can live a pain-free and normal life, and she won’t remember a thing of this. I try and remind myself that very often, especially at what feels like my breaking point. I find myself daydreaming about summer often, life without her cast and healthy hips. It is such a bittersweet feeling to wish away time. I feel guilty for it because I know we won’t get this precious time back, she is only a baby once, but I can’t wait to get back to normal life full of hugs, baths, meals in her high-chair and normal activities without this big purple barrier. Nevertheless, I have said it before and I will say it again, children are so resilient. While I am over here moping, Adeline is smiling, giggling, entertaining, and overall a happy baby (for a good 23 hours out of the day). Children can teach us so much.

I am looking forward to this weekend, getting outside and spending family time together. I hope you have fun plans ahead too, and if you think about it, say a quick prayer for us for Monday. We know God has a plan greater than anything we could imagine and bigger than all of this.

Much love to each of you!
Anna

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