A successful 2nd surgery!

Bittersweet.

This is the word of the day, of the week, of the last two months. Especially right at this very moment.

Going in, we knew the post surgery part of it would be so much less than what we experienced 6 weeks ago with her first one. However, in that moment while you prepare to take your little one back for yet another surgery, that means absolutely nothing. It means nothing because regardless of what it is or the type of recovery you face after, you face the exact same nightmare prior to the pot of gold at the end. I hoped it was different. Prayed for it. But it was the same. We still had to sit in preop with the same faces we saw 6 weeks ago, go through the same process, put on the ever dreadful sterile suit, walk her back to where we would eventually leave her behind and explain to her that she had to have surgery again. A two year old doesn't understand the details in between. They just know what they remember from before, which for her was a lot. So for lack of a better word, IT SUCKED.

I knew once we got over that initial hump, we would feel differently and we did. My heart really goes out to every Paley parent and patient who has ever hit a bump in the road, an unplanned surgery whether it was minor or major or been given bad news, especially if you were just turning the corner or nearing the end of something. I know a lot of you have experienced this. Even parents with children with other disabilities or ailments can relate. It's just horrible. But once you get past that and it's good again, man, it's really good isn't it?

That's why it's bittersweet. You get through it and you appreciate so many little things. Things you appreciated before but didn't take the time to stop and really allow yourself to take in. I walked the hospital halls this time and could have done it with my eyes closed. I was at ease not having to ask questions and knowing which food to eat or not to eat, how to get a Popsicle in 2 minutes over wasting 30 minutes waiting, when to ask what questions and where to park. All these things made it so much easier. And at the same time, I felt a little pinch of sadness in my heart that I knew those things. I don't want to know those things. A hospital should be unfamiliar. Being able to appreciate the Halloween decorations last time and the Christmas ones this time, yet hating that she's missed so many events and celebrations this season because of all this. But I love it, crazy, but I do. If she has to be here, what better time than when the place is decked out with head to toe decor. See? Bittersweet. She got an early Christmas present today from the staff and as happy as I was, that little pinch was right there with me, reminding me that I'd rather her be the kid visiting other kids with presents, not the one receiving one. Watching her play with her shiny new bracelets made me so happy though. Today has made me so happy. Knowing there is an end, at least for this year, is incredibly comforting.   I'm learning, that's just what you have to do. If you want to not just survive it, but grow from it, you better find a way to appreciate some of it. This time I knew I wouldn't sleep, so instead, I laid in bed with my sweet girl and ate snacks and watched tv into the really late hours of the night with her and watched her fall asleep. Top 5 moment right there. A moment I wouldn't have had without this awful experience. God always find a way to slap you sideways and knock some sense into you. Last surgery tore Rich and I apart from the inside out and this surgery brought us back together and forced us to really lean on one another. Just another blessing. I've said it before and I'll say it again because it keeps proving to be true....this has torn me apart, over and over. Yet, it's always the same thing that
restores me. It's always something involving her condition, something we go through that brings me
back to life.

Today, I'm hopeful. I'm hopeful nothing else will go wrong. She has a small incision that should heal really quickly with no issues and should be on her way to walking soon. We get to go home, sleep in our beds, sit on the couch staring at the tree, see our families and just be. There isn't much under the tree and I don't care. If I had the time, energy and money, I'm not sure I'd want it differently. If she is able to walk to the living room Christmas morning, I'll be ecstatic! Or even New Years.  This may be the first year where I truly reflect on why we wake up on Christmas morning celebrating. I hate to admit that. It becomes something you "try" to teach your kids or "try" to remember during all the hoopla that makes Christmas so fun, but it's all I remember right now. It's all I think about. Knowing what He did and wanting to honor Him and celebrate Him and give so much glory to Him...what He's done for Norah...just wow. I'm thankful for this huge mess and I'm not even sure I know why. I just know He's working.

I hope this is the last blog post for a while. They're typically centered around something happening or about to happen in her journey and I really hope this is it for a while. If I post, I hope it's a crazy awesome video of her walking again!

Thank you to all for reading. Thank you for sharing our prayer posts with your friends and family so they could pray too. Thank you always for supporting us.

Blessings,
Nikki

An unexpected 2nd surgery

Well, we have hit a bump in the road. A very annoying, saddening bump.

I found a large bulge on Norah's stomach located by her hip on Friday afternoon. I showed this to Rich as soon as he got home and within an hour of exchanging emails and calls with the Paley team, we were set to meet Dr.Paley at his hotel here in Orlando. Luckily, he is here for a convention downtown so it was much easier than having to go to the clinic in West Palm Beach. (Tells you a lot about this amazing doctor) Not to mention the fact that he will speak directly on the phone if you need him to and even text message back and forth.

We knew before meeting him, this wasn't good. And even though I was told not to worry about it, I trusted my gut, as did Rich. This was not normal. So abnormal that Dr. Paley stated he had only seen this once before when doing a Pelvic Osteotomy and Dr. "G" twice before. That's not exactly comforting. You want to hear that it's very common and occurs sometimes with this surgery. Well, at least that's my preference. Anyway, that's not what was handed to us.

Apparently during the surgery, they detach any muscle or tendon attached to the hip to get to the area they need to work on and some of the muscles in the abdomen. Once they have done what they need to do, they attach them back to the bone and suture it up. Somehow, hers have detached themselves from the bone, thus causing the bulge. Yes, gross, my mouth dropped too. We call it the "Paley Hernia" because it isn't exactly a hernia, but it kind of is. This doesn't happen in a child normally like a typical hernia. It results from the surgery. They need to go in and reattach them back to bone. In hindsight I'm realizing some parts of her therapy that are more uncomfortable than other areas and some areas on her belly that are tender...well, now we know why. So, another surgery awaits us. He has decided to perform this surgery alongside another surgeon because it is orthopedic and non orthopedic related. They can do this one of two ways: through her existing incision, which we don't want because it is 12 inches long so that entails a longer recovery for her and they have to work with more to get to the area (like quad muscles etc.) or make a new incision on her bikini line a few inches long and get to the area that way. The issue is the one doctor isn't quite comfortable going through Paley's incision and Paley isn't quite comfortable making a new one at her bikini line since that goes a little bit out of the orthopedic realm. So, they are teaming up and doing it together. How, we won't find that out until Pre op day. Her pre op is scheduled for Monday the 8th and surgery Tuesday at 8am. Depending on what route they take for the surgery will determine how long we stay in the hospital. Either way, it won't be the length of time for the first surgery. And it doesn't affect the work they did to her hip or affect her as far as being a candidate still for lengthening. :)

This is technically minimal compared to what she just did and what we went through also, but honestly, because it is unexpected and unplanned, it just feels bad. She was just 6 days away from "bye bye boo boo". Heartbreaking to say the least. It's hard to shift gears when you're planning a trip to solidify a recovery and move forward and you now have to keep your same appointment but for an unplanned surgery. We were supposed to be going there next week for something really exciting, not to start over. (Atleast right now, it feels like we're starting over) Looking at her calendar on the refrigerator for "bye bye boo boo" brings an immediate tear to my eye because I feel like a liar. We wanted to assure her that she wasn't being punished and Dr.Paley was helping her and that the cast and the booboo weren't forever. It was very successful because she stopped fighting the cast and it sank in that there was an end in sight for her. It became a game each day to put the sticker on every day we accomplished. Now, I look at the calendar and yes, she gets her cast off but at the same time she gets another "booboo"....a different one. Talk about feeling like a huge jerk. She understands SO much and communicates extremely well..always been really proud of that. Right now, I wish she didn't understand so much because that little girl is going to know something's very wrong when we take her in there. We're not the types to not prepare her for something in fear of a letdown or meltdown. If either happens, we deal with it, but we never keep her in the dark about anything. Well, I want to do just that. But I know I can't. Not now. I'm actually scared to sit down and talk with my two year old. I value her feelings, I really do. And I respect her, which is why we explain so many things to her...it's exhausting..but yes that's the way we do it. :)  I know we will find the right way to discuss it with her...Daddy always finds a way to put a fun spin on things. He has his work cut out for him on this one.

 I'm going to end this with something new. I'd like for you to read this prayer to yourself if you don't mind, and pray it for our little girl, Norah. I would genuinely appreciate it and I know Rich would too.

Lord,

I pray for your mercy and healing on sweet Norah Howes. Invade her body Lord with your presence. Lay your hands on the doctors and be with them while they perform their work on her with the skills you entrusted them with. Remind them of these skills and make them confident. Provide strength to her parents and patience through another long road. Let them provide comfort to each other and to Norah and may they let you live in their heart at all times.

Amen