Anger can be useful if you use it in a constructive way, such as advocating for your child. Bitterness just gets in the way. Stop thinking about what might happen and be optimistic about the outcome. And most importantly find the strength to be positive for the sake of your child. Our sweet Lyla bird has Hip Dysplasia.
What is Hip Dysplasia?
It is a condition in which the top of the thigh bone is not in the correct position inside the hip socket, which can affect the shape of the bones in the hip joint. There is no known way to predict or prevent it from occurring, but it is highly treatable. The goal is to position the hip joint so it can grow correctly. About 1 in 1,000 babies have hip dysplasia and is more common for children who have the following risk factors: family history, gender (girls), firstborn, breech, and big babies jammed packed in a small uterus. I think it's pretty safe to say that it's probably a result of Lyla being jammed packed in my belly!
And the story goes...
Wednesday the 11th: Took Lyla to the doctor because she was sick.
EVERYTHING HAPPENS FOR A REASON.......
Michael's insurance changed at the first of the year. Lyla's first pediatrician was no longer in-network so we had to find another pediatrician - Dr. Julia Ray!!
While Dr. Ray was checking Lyla for her illness, she did the normal "checking of the hips"...something we had she seen her first pediatrician do at all her other appointments. I'll never forget Dr. Ray's words:
"Has her previous pediatrician started treatment on her hip?"
Our reply...."What.....?"
Friday the 13th: We take Lyla in for an ultrasound
Saturday the 14th: We get a call from Dr. Ray confirming she does indeed have Hip Dysplasia and we need to get into an Orthopedic specialist immediately.
Monday the 16th: Research, research, research!! Read, read read!! Shock, confusion, denial....Take her in for a second opinion!!!
Thursday the 19th: Orthopedic appt and harness "fitting." Next thing we know we are taking sweet Lyla bird home in her harness.
What now????
The next 3 weeks are extremely important. Not that we can do anything in the meantime -besides wait - she goes in for an ultrasound on March 12th. If there is even a small improvement we have a lot to be encouraged about. If she is improving than she will continue to wear her harness 24/7 until the orthopedic believes she is all better. There is SO much uncertainty with this condition. She can be in her harness 6 week up to 6 months!!
If after 3 weeks she does "not" improve the orthopedic will keep her in the harness for another 2 weeks. If after those 2 weeks she still shows no improvement than we will have to take a more severe course of treatment....which involves surgery and a body cast.
So in 3 weeks we will have a much better understanding of the severity and if the harness is working!
We are so incredibly fortunate that her new pediatrician found it "now". If discovered after 6 months the harness would not have been an option for Lyla.
Because she is 4 months the odds are very much in her favor for a full recovery! She will have to wear her harness much longer than if it were caught sooner...BUT as can be seen below Lyla is adapting very well!!! And it helps that we are finding lots of creative ways to keep her comfortable:)
Needless to say Michael and I are having a much harder time with this than sweet Lyla. We have spent so much time telling ourselves it will be okay, she'll never remember, aren't we lucky it isn't a serious illness, that we have to remember it's okay to "grieve our loss." We know this too shall pass but in the meantime it is a loss to us. You spend so much time imagining holding your sweet baby, thinking about all the future milestones -all these images never involved our sweet Lyla bird in a harness :(
Just as quick as I typed the above thought - it's even quicker how quickly you gather your emotions and perspective!!! We know sweet Lyla bird is going to be absolutely fine! Her condition IS treatable - it's going to be a long road but as I started off this post....you find the strength and positivity for the sake of your child!!!!!!!!!
Below is a very good website that explains her condition in more detail:
You can't see her legs in this pic -but we rolled up a blanket and put on the floor in between her legs...easy solution for tummy time:):)
So as you can see Lyla is just a sweet as ever! It is truly amazing how adaptable and resilient children are. In 3 days she has already taught us so much:
* The actual meaning of strength and perseverance- not the textbook version!
* That a smile CAN light up a room!
* That one person, no matter how small, can impact a lot of lives!
* Patience, patience and more patience!
* To slow down and enjoy today!
* That I am stronger than I thought!
Our little "hip" baby.....
9 comments:
And it WILL be OK!!!!! Hang tough, the wonders of technology and knowledge of so many physicians--so thankful for those!!!!! I've seen several families who have gone through this and the outcome has been positive, for those babies where the parents are compliant!!!! Not a concern with you guys, I know you'll do exactly what your told. She changes with every blog entry!!!!! What a doll baby!
To make a long story short I have followed your blog due to the fact that we both cheered for UC and we both were pregnant at the same time. And now we both have something else in common. My daughter, who is 5 months old, also has hip dysplasia! We've done the Palvik with, sad to say, no results. So Jan 20 of this year she had an open reduction and is in a hip spica. If you have any questions PLEASE ask I've been in your shoes and I know how you feel. Feel free to email me at Michelle.clark55@yahoo.com
Lyla is looking great!!! Everything will be ok. :) Donna
Oh my goodness she is adorable! Kinley is just about to flip over her legs. Keep us posted we will keep her in our prayers!
This post is the exact reason why I say to people all the time that my little sister is the woman I most admire.
Let me know what I can do to help and the box full of Josie's outgrown cardigans and zip-up hoodies will be on it's way tomorrow. Big hugs to all three of you! xoxoxoxo!
Both of my daughters have amazing daughters and I love and admire both of them. Little bumps in the road will pass. Love Mom
Hey Amanda and Micheal. Just wanted to let you know that I have a friend who has a son that was born with this as well. He was actually born with his legs above his head so it was a pretty severe case. He had to wear the brace for 5 months. Anyway, he is 5 now and there are no signs of any hip problems. I'm sure Lyla will do great. She is so cute! I love reading your blog! I'm going to be in Chicago on Monday-Thursday of next week. I'd love to see you if you are free and I am able to sneek away. I will be in meetings so it is very busy as I'm sure you are with Lyla. Anyway, I don't have your # anymore b/c I washed my phone. Can you send me a text with your #? Mine is 740-701-1947. Take care!
Looks like a brace is not going to stop Lyla from smiling and having a good time! Hugs - Case
It looks and sounds like Lyla is doing great. I would expect nothing less with such wonderful, compassionate and encouraging parents. You guys are doing everything right! Keep up the good work! Lyla is in my prayers (and so are you two)
XOXO Amy
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