Spica Week 15: Awareness
The month of June is Hip Dysplasia Awareness Month. Throughout our journey so far, I have been amazed by the surprisingly large, worldwide community of people either suffering from DDH, or parents of kids who have been diagnosed. I never even knew it existed before I heard the doctor say, “She has a hip click,” but now I realize that we are not alone. Particularly through Facebook, a thriving community exists, and we have been able to connect with several great people who have been an encouragement during this time.
Groups like the International Hip Dysplasia Institute, One Hip World, and Hip Hip Hooray are leading the fight against DDH, and raising awareness. They are conducting research, holding fundraising events, and publishing material like the flyer below.
One of our favorite resources on DDH is Hope the Hip Hippo. We bought this children’s book a few weeks ago, and it is so cute. It does a great job of explaining Hip Dysplasia and spica casts in a way that makes sense to kids. Grayson enjoys reading a book that has a character just like Londyn.
For those of you reading this blog who are outside the DDH community, or maybe preparing to enter it, I wanted to offer a few thoughts on being a spica parent that I have learned from our experience:
- Life can be “normal.” It looks a lot different, but it’s amazing what can become normal and routine when you are in a situation where you have no choice but to embrace it.
- Babies are resilient. Londyn exceeds any expectation I would have ever had for my baby when it comes to dealing with things. There have obviously been rough patches and times that are not fun, but Londyn seems to be bothered more by teething than she is by having her body in a cast for the last 15 weeks.
- Babies are resilient. But please don’t tell me babies are resilient. Although true, this statement isn’t helpful. We have received many well-meant comments like this that feel like minimizing Londyn’s situation. Sometimes it seems like people try to minimize the severity and impact of this in their own minds, so they don’t have to emotionally deal with the things that someone like Bridget has to go through on a daily basis to care for Londyn. If offering encouragement to someone in a situation like ours, we recommend one of the following lines:
When can I come over to hold your baby?
Your baby is beautiful.
I am making you chocolate chip cookies right now.
You are already doing a great job getting your baby through this.
Your baby is so lucky to have you.
I’m bringing coffee.
I’m sorry you have to go through this.
How are you feeling about this?
As for our journey, we have been “in the trenches” this week with our spica baby. One side effect of being in the cast that Londyn has encountered is extreme constipation. This week was probably the worst I have seen it, and poor Londyn was visibly uncomfortable. She has been prescribed stool softener, which she takes daily, but this week we still had to give her another suppository and hold her screaming on Grayson’s training potty for twenty minutes before she was finally able to go and relieve her discomfort. As a daddy, it is quite unnerving holding my baby girl over a potty while she is screaming in pain, and that feeling of helplessness is something I am very much afraid of. Our pediatrician told us to double the dose of stool softener for a week, and we are praying that does the trick.
This week hasn’t exactly been a high point of our journey, but one encouraging thought keeps us going above all others: Three. Weeks. Left.
Click here for more of Londyn's story.