I have looked forward to this day for SO LONG. 98 days to be exact. Today was a day I was nervous about because it was the day we would find out if our journey was coming to an end, or if we were going to be opening a new chapter of treatment. I am happy to say that her X-ray came back perfect. She came home without a brace, and we have an appointment in 6 weeks for a follow up X-ray to make sure her hip is still in place. Am I nervous about it? I'd be lying if I said I wasn't. But, I am choosing to trust in God and in His plan. He got us through this, and I believe that He will keep her hips secure and in place.
Katie was not a happy camper during the cast removal. She cried her eyes out. Naturally it was hard to see, but at the same time we were so excited for what was happening that our hearts were not as broken as they've been in the past while watching her cry at the hands of DDH. A few minutes of a saw buzzing away, a few more minutes of scissors cutting apart the inner lining, and then there they were--the most perfect little legs and thighs I had ever seen. People had prepared me for a hideous sight, but Katie's little legs looked amazing. A small patch of flaky/scaly dead skin, but that was it. Her doctor said we win the prize for cast care. He was bery impressed with the condition of her skin. One bath later and her legs are looking as good as new.
Right now her legs still naturally fall into the froggy position, and they will for a while. Eventually they will go back to normal. We need to not lift her up by her legs when changing her diaper because her tendons and tissues are still doing their work. We also are to not to force her legs into any position. We need to let them do their natural movements. But if she wants to stand, she can. If she wants to kick, she can. Basically, anything she is comfortable doing, she can do. And she's already army crawling all over. She seems surprised by how much easier it is to move. She ended up rolling onto her back already, too, and it really caught her by surprise!
Everything about tonight was perfect. I got to bathe her, I got to put lotion on her entire body, and I got to nurse her, holding her close to me. But, best of all, I got to hold her and rock her to sleep for the first time in 98 days. She felt so perfect and light and cozy. I'm so in love with my precious baby all over again.
Free at last, free at last, thank God almighty she is free at last!!!
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| The cast had just come off, and I was able to put her in a favorite outfit of mine! She still looks a little shell-shocked from what had just occurred. |
I just want to thank you for posting this blog. My daughter will go into a spica cast on Thursday. She is only 3 months old and small for her age. Your blog was very encouraging and also brought me to tears. We are praying for a miracle too, but are also trying to accept God's will for her. I'm hoping our journey with HD will end in 3 months just as your has!
ReplyDeleteI forgot to mention that we go to Dr. Weinert too and the procedure will be done at CHOC. I would love to hear any particular advice you can give us for the dreaded day. It's a closed reduction procedure. She was born with two dislocated hips, was in the PH for 2 months, and it worked for her right hip, but not her left. We are checking in at the lobby in the hospital, so I don't think it's at the Outpatient Pavilion.
DeleteHow did it go on Thursday?? How is she doing? The first few days/week are the hardest. Hopefully Dr. Weinert was able to leave a big opening for your diaper changes. We have a pink spica table that was our saving grace for the 14 weeks. If you would like it, please let me know! We no longer need it. Hang in there. It sucks, plain and simple, but soon it will be just a memory--we are living proof of that. What did Weinert say after the procedure? He told us he was optimistic that the cast would do the trick, and he was right. Hopefully he's just as optimistic for your sweet little girl.
DeleteThanks for replying, Theresa! I just remembered the other day that I left you a message here. I'm using my Blogger profile now so you know who I am. Thursday was okay...Violet was a real trooper. She didn't really cry except when she wanted to be fed, needed a clean diaper, or had to be fitted for a car seat...all things she would normally cry about. The first week was not so fun, but she is used to the cast now. Diapering is a bit of a challenge. We already got the cast wet and had to blow dry it all day. I can't put anything in the back of her cast other than the tip of a diaper because it is so tight. Maybe after the recast it will be easier. I would love to have your spica table. Thank you!
ReplyDeleteOh, and I think Dr. Weinert gave us the normal statistic for treatment with the spica, which I think is 99%. I kept trying to get him to tell us she wouldn't need a brace after the cast, but he only said we had to wait and see. He described her left hip as "spring-loaded" and this cast is super tight, so I'm hoping it does the trick.
DeleteEmail me theresagoldenberg@yahoo.com and we can arrange a time for you to pick up the spica table, or I can drop it off. We live in Foothill Ranch but work in Tusin.
ReplyDelete