Let's just get this over with and check this one off the list. Hip.Check.
October 29, 2014. Ugh. All I can think about is July 29th, then August 29th. Any day in between is just a blur.
We saw Dr. Paley Monday morning, July 7th ...oh wait, no, our appointment was Monday morning, then got moved to the afternoon and then we were seen at 7 o'clock at night. My bad. Still love them anyway.
We did the usual x-rays, those never get any easier, but compared to the 1st appointment, these are a cakewalk now. Business as usual. We waited a good while, then left to drive up and down I-95 for a nap. I strongly encourage you to do this if you have a toddler that won't sleep in a stroller. We didn't realize we were allowed to go off campus at St.Mary's until this appointment and it made the wait SO much easier. Even if they are older, just go out for lunch or for a drive, find a playground or something. You can only run the halls and play in the playroom for so many hours before your kid starts coloring the walls and breaking phones. (Sorry St.Mary's Medical Center) I will say, this is not a doctor's office. It is not like taking your kid to the pediatrician and waiting in a small room. There are multiple waiting areas, hallways, a patio and a playroom to entertain them. So if you are headed to Paley for your 1st appointment, yes it's a brutal wait, but atleast you have some space to set up camp.We came back when called and waited another few hours and finally went back to an Examining Room. I love how each time, they arrive like a team of soldiers and start comparing notes and thoughts without even starting a conversation with us.
"Hey guys." That's what you get...and I don't mind it a bit actually.
Norah typically rips the bed cover to a thousand pieces while Rich tries to keep up with everything they are saying and then regurgitates it to me in my language. After a few minutes of them assessing her x-rays, Dr.Paley looked her over. She was captivated by him actually. She just stared at him while he bent her legs and moved her around and didn't protest at all. Once it was time to get on her tummy to look at the back of her legs, she jumped for joy because this is her favorite part about her Gym Class that we do. Everyone gets on their tummies and taps their hands on the floor like drums. (The kids tap and Norah slams her fists in the ground like she's trying to break through the Earth.) So gym class paid off at this visit. Here is the assessment:
Pretty much the same darn thing we heard last time. :) Pelvic Osteotomy 1st. If he finds that it turns into a Super Hip Surgery while he's in there, then he will do it. At this point, she is not a candidate for it and that's a good thing. She has a good hip, also a good thing. The purpose of this procedure is to create a stabile hip joint. Once she turns 2 she can have the surgery. It has been scheduled for October 29,2014. We will spend about a week there for Pre-Op appointments, surgery, hospital stay and a couple days after when she is discharged for P.T. before we come home. The length of physical therapy, we don't know yet. She will spend about 6-8 weeks in a Removable Spica Cast. We hope to have her ready to rock and roll by Christmas. He may or may not address the knee during this surgery. Her knee is rotated inward and she does not have an ACL or PCL so he will probably need to build her one. The ankle we are still not addressing at this time, probably after her 1st lengthening. Basically, in these situations, things can change on a dime. He could get in there and just do a little work on the hip or turn it into a Hip and Knee surgery, we don't know. You don't find out your surgery time until the day before. However, the younger ones are done earlier. That's crazy difficult for planning Moms such as myself. Even more so, when you're traveling. We are semi-local so fortunately we do not have to book flights like 80% of Paley patients, but we're just far enough away that we need to book lodging in advance. I am just going to make it easy on myself and have our bags packed by October 1st. :) I read a parent's blog recently about how they were in route to Florida, when they're daughter became sick ON THE PLANE. Can you imagine? All that planning and preparation, just out the window. They had to fly back home and re-schedule the surgery for when she was well. I cannot imagine all the logistics that went into that. With that said, we've been advised to quarantine her being as young as she is. The amount of time, I haven't figured that out yet. If this were a local surgeon that didn't book months in advance, we would take the chance, but we don't have that option here. I don't even know how this will be possible to be honest.
Psalms 112:7 NIV tells us, "They will have no fear of bad news; their hearts are steadfast, trusting in the Lord."
This one speaks to me from right over the stove while I cook. :)
I can let worry and fear eat me up, or I can change my perspective. These days, it's all about perspective. And you cannot will yourself to do that with your own strength, trust me I've tried. You can only do it through God. Anytime I rely on myself to just "snap out of it", or get myself together, regain self-control, or whatever you want to call it, I fail. When I stop and pray over it, it changes my entire perspective. I will trust the doctors. I will trust that God will lay his hands on their hands and their hands on Norah's. I can be a godly wife and mother through this. I can model for Norah how to handle this extremely disheartening circumstance in 1 of 2 ways. I can freak out and obsess and worry over it, or I can allow God to redirect me at each bad moment and cover me. She sees that. Rich sees that. Of course, I'm going to freak out sometimes and even be ugly about it, but the goal is not to be perfect or teach her to attempt perfection. It's about teaching her who to turn to when she's at her worst of times and moments. Finding that extra, little bit of strength hiding in there, or patience or joy or whatever it is she is struggling with that day. I am fortunate that my husband does this naturally and inspires me moment by moment to apply it. I laugh with him sometimes about how the wrong parent is staying home with her. :) Everything I am trying to teach her, I don't do naturally and am having to teach myself alongside her! I like to think of this journey as a re-do for my life. My daughter's condition, as heartbreaking as it may be, has changed me. This little ray of sunshine, yes, very loud, spirited, rambunctious ray of sunshine has turned me into a woman of faith. This experience tests me in ways I've never been tested. Things that have never come naturally to me, I am forced to learn not only to be a good Mom, but to help her through this in the most joyful way possible. Stilling my tongue and controlling my words is the hardest thing along with patience and trust. She makes me better and Rich makes me ten times better. I can't help but be so angry at the pain she will go through, yet at the same time feel so much joy and happiness for where my heart lies with God because of it. The news of her condition tore apart my faith when she was born and at the same time, it has restored my faith. That to me, is miraculous. How can the very thing that ripped you apart, somehow manage to become the thing that took your faith to a whole new level, your love for the Lord to a new level. Will she ever know the gift that she is to us? Will she ever know what she did for her mother? I know not everyone that follows is a Christian. I know there are plenty of PFFD parents out there with their own set of beliefs, and that is perfectly okay. :) I have friends with their own beliefs as well. I hope if you can't see this the way I see it, that you can at least see this as something beautiful. See it for the amazing miracle that it is. And if you are a parent just learning of your child's disability, I hope and pray that you read this and know deep in your heart that you were called to take care of that child. They will be remarkable and amazing, just like Norah, I promise. I cannot wait to one day, sit her on my lap, and tell her what she has done for her mother without even realizing it. I hope I can give her the same gift in return.
Thank you for reading, caring and sharing!
Nikki
P.S. I am in serious planning mode now. I received a ton of emails with guidance and suggestions from our last blog post, so thank you to all that are trying to help! If anyone has a child that underwent this surgery, I would love to hear the details of your experience. Any guidance you can give us on navigating the hospital, the process, dealing with the Spica cast, p.t., anything would be helpful. If anyone has any connections on renting a HIPPO Carseat, or harness for Spica Cast patients, that would also be greatly appreciated. Our insurance plan has been a little difficult to work with and quite frankly I find myself saying, "Grace!!!" very often in my head so that I don't rip them a new one. So with that said, alot of these things aren't covered. Shoe lifts are included in that statement as well, so thank you so much to everyone that has been so generous with helping us with Norah's shoes!
