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

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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

Our First Week Home

1 week in the books! Might seem like a little milestone, but let me tell you, 1 week has been an accomplishment for us. Adeline has been amazing and considering the circumstances she is handling all this with such grace and most of the day she is smiling. Me on the other hand, lets just say, I am getting a lesson on patience every minute of every day. We are getting creative with our days, and since she has about a 5 minute attention span, things change rather quickly around our house. One minute we are throwing balloons in the air, the other we are blowing bubbles and shaking rattles to make music. We are reading lots and singing often. But the beautiful weather we have been having in Atlanta has been the best blessing. We have clocked likely around 15 miles this week in her wagon, with multiple walks a day to get out of the house and score some fresh air and sunshine. She perks up when it is time to go for a ride outside and the cool breeze helps air out her cast too because she does get pretty sweaty.

We have 1 more week of keeping her flat, so we plan to keep things as interesting as possible for her. Although we would normally avoid screen time, we have turned on “Clifford” (remember that show?!) a time or two and I won’t admit or deny the fact that Greg and I now have the theme song playing in our heads on repeat and we could likely sing it to you. Unfortunately (or fortunately in every other case but right now), Adeline isn’t big on the TV. She will watch about 1 minute and she is ready for something else. She loves to read so I have a feeling her little library will grow these next several weeks, which is ok in my book (pun intended)! And in another week when she can start sitting up again, things will begin to get a much easier.

Stay tuned for more adventures with Adeline as we tackle treatment on the road to healthy hips!

An Update: Our Brave Little Princess

Today marks day 3 of life in the spica cast and our second full day at home. What a whirlwind of a weekend! Thank you to everyone who has been thinking of us the last few days.

Friday was one of the absolute hardest days of our lives, but Adeline handled it like a champ and we couldn’t have felt more thankful for how smooth everything went. Our day started around 1:45 AM and I feel like it never ended. Adeline was not able to eat anything after 2 AM so I set the alarm to give her a bottle at 1:45 AM. She didn’t leave a drop…I was so thankful. The alarm went off again that morning at 4:30 AM and all three of us woke up for the day. Surprisingly, Adeline did well not eating and stayed in the happiest mood. We arrived to Children’s Healthcare of Atlanta at Scottish Rite at about 5:50 AM that morning and between the car ride, the bright hospital lights, the bubbles the nurses entertained with and Adeline wondering what in the world was happening, she did so well.

They took her back right at 8 AM. The pass off was the toughest part, but we knew she was in good hands. The surgery lasted about 2.5 hours (thankfully it was shorter than we had expected) from the time they took her to the time they finished and she was transported to the recovery room. We were in countdown mode the entire time, couldn’t wait to see her, and around 11 AM as she was waking up from the anesthesia we received the call to come in.

We also received periodic calls from the operating room keeping us up to date during the operation and after the surgery we met with Adeline’s surgeon. We know God has had His hands in this no matter the outcome but the report following the surgery was a testament to God’s faithfulness. During the operation, Adeline’s surgeon performed an arthrogram on her right hip which confirmed what the x-ray had told us. Her right hip was perfectly positioned and needed no work (which also meant she wouldn’t need a full leg cast on her right side either). The news about her left hip was very positive too. Her doctor tried to perform a closed reduction on that side to see if there was a way to avoid opening her up, and although it didn’t work and he needed to perform the open reduction, the left hip had improved since November! It wasn’t as stable as it needed to be though, so they opened her up and cleaned out her socket and placed the left hip back in place. According to her previous x-rays it looked as if the left hip socket was very shallow, but in fact, during the operation they realized it was not as shallow as originally thought (another huge praise!) and her hip is relatively stable now.

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Adeline was pretty in and out of it the remainder of Friday on medicines for pain and for muscle spasms. Up until yesterday, she had pretty frequent muscle spasms and seemed to be uncomfortable, but that is to be expected after a major operation and her new cast. Thankfully very minimal swelling though. It was extremely difficult seeing our baby go through this, but it is amazing how resilient children are. Over the weekend, and even more so today, she has been her playful, happy self and she is no doubt bouncing back. I will add, much to my surprise, we have all slept amazing the last two nights. I think it may have been the best sleep in her 8.5 months of life!

What’s next?
For the next two weeks we are going to be doing a lot of resting and napping, reading books and walks in the little red wagon to keep Adeline in a flat position.

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In two weeks we will have a follow up appointment with her surgeon and at that time another x-ray will be done of her hips. We want to make sure everything stayed in place like it should and nothing moved. The two-week follow up appointment is, in my opinion, a big milestone if we get the report that things look good. We are hoping for positive results for her left hip so that we can continue treatment in the cast as is and not have to encounter more operations. It will be nice to be able to allow Adeline to finally start sitting up a little more too! Oh how I can’t wait for that day!

Again, we thank you for all the notes and calls. We have a very special little girl and we know God has big plans for her life.

Hugs!
Anna

Friday, Here We Come

This week has felt so slow, just crawling to Friday, but at the same time, I don’t know where the days have gone! Has anyone else ever felt that way? I have been building up this week so much in my head for the last several months since Adeline’s previous operation last November. Tomorrow morning we go in for her second surgery. Similar to the last operation, the end goal is to get her hip back in the right place! But this surgery will be much different.

We went in about two weeks ago for her pre-op appointment and an x-ray was taken of her hips. Before the upcoming procedure our doctor wanted to make sure her hips were still indeed dysplastic. As we expected her left hip is completely dislocated, basically floating pretty high up above the socket which is causing her left leg to be an inch or two shorter than the right leg, and the hip socket is very shallow (meaning there isn’t really a socket right now and the bone is pretty much flat as to not be able to hold the ball of her hip in place). However, the x-ray showed very positive news for her right hip – it is in perfect position and there is bone growth happening to form her socket as it would in any normal child! We were so pleased with the news about her right side and can now focus on getting the left one back into position and healthy.

With Adeline’s surgery tomorrow, she will be put under anesthesia and instead of just manipulating her hip back into place, our surgeon will be making an incision and cleaning out her hip socket with whatever has grown in it’s place. This could take around 4 hours. The reason the first operation did not work was because of this growth blocking the ball of the hip from going into the socket and staying stable. Her surgery tomorrow is what they called an open reduction (opening her up vs. a closed reduction like she had in November where she stays closed up and all they do is clip the tendon) and with this procedure the doctor will be able to place the hip back where it should go and cast her up. Adeline will be casted her entire left side and halfway down her right leg in order to hold the hip in place and promote the bone growth around the socket as is happening on her right side. With the last operation we were unsure if it would work and Adeline would be in a cast, but we can be sure this time around she will be rocking what they call a spica cast for at least 8 weeks.

We are hopeful and pray for a smooth operation and swift recovery. She will be in the spica cast for a minimum of 8 weeks and at that time we will go in for a cast change. Her doctor will perform an arthrogram on her hips and wiggle them like crazy to check the progress and stability. If necessary, she will be placed into another cast for 8 additional weeks then followed by a brace for 3 months after the cast removal. We have a long road ahead of us, but we are so thankful for the ability to be able to treat this for the long term. We are also thankful that as tough as it is on us as parents, she will have no recollection or memory of this except a tiny little scar that will serve as a reminder of our brave little girl’s journey to healthy hips.

We ask that you please keep us in your thoughts and prayers tomorrow and in the weeks following this. For the next two weeks Adeline is required to stay in a flat position laying down in an effort to keep her left hip in the correct position and not move. We will have to get creative on activities to keep our wiggle worm entertained, so send them our way if you have ideas!

I know we have said it many times, but we can’t thank you all enough for the support and thoughts. We feel so blessed with the best and we are ready to take on tomorrow!

Much Love,
Anna, Greg & Adeline

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