Tuesday, November 17, 2015

Let's talk about...

TRAUMA. Let's talk about trauma..

  October 29th marked a year since Norah's first surgery. I wish I could say she has recovered well and life is back to normal, but I'd be lying. She had two other surgeries after that due to complications and then had her 8-plate removed from her knee early this year. She will undergo Ankle surgery soon along with leg lengthening. Some surgeries are major, some are minor. But as I've said before, for her, they require the exact same thing. They trigger the same memories for her. We go through the same process, to the same place, wear the same gown, take the same meds, sometimes we even have the same nurses! All those things are the same for her. In a household where we are adamant about keeping her routine, this would be a very good thing. But in this case, it's a terrible thing.

  To the PFFD parent who may be facing similar struggles, the Mom pulling her hair out while your kid recovers in a Spica or the Norah fan who wants to help and support her, this is why I write this, to teach the parent to the left of me, the way the parent to the right taught me (Shout out to you, Taylor, Charles, Havalyn and Kristen) and to let anyone and everyone around me know more about Norah. Because you know what, she is special. She is unique and fights a unique battle; battles no one even knows about. Parents on our support page are fighting battles we haven't fought yet, battles we may never have to fight and battles we've already fought. Thank you to those parents around us for helping us through Norah's surgeries. Thank you for your detailed posts and blogs so we could prepare. Thank you for brainstorming issues that arise after surgery and helping us sort through them.

 We didn't see any signs early after her surgeries. Typically if a child goes through trauma, their regression may begin 6 months to even a year after. I thought I just had a "difficult" child. I was constantly trying to figure out what was causing her behavior, especially since she had already recovered physically. I re-evaluated every single thing I was doing and made it my mission to change my own behaviors. After making quite a few changes in our household, reading, studying and even taking classes on it, quite a bit changed for the better. But, there were so many other things not adding up. Our usual FANTASTIC sleeper suddenly needed lights on, one of us helping her get to sleep or even staying with her "to keep her safe".  Friends close to her suddenly became triggers to bad memories. She reverted back to younger behavior. She was so easily startled, upset or hurt. She'd even exhibit physical symptoms like headaches, muscle aches and frequent fevers. She went from regulating her emotions, taking a breath and counting through it, to not being able to calm herself and asking me to help her do it. Everyday I am asked if we're going to the doctor. Every.single.day. Every car ride or trip, she is afraid and needs a detailed explanation of what we're doing and where. The only place she trusts we're really going without an issue, is Mimi's house or with Nana. She knows they don't take her to the doctor, so it's safe and always fun. I can remember when she was quite obedient which seems like so long ago. Originally, I chalked it up to the "terrible two's and trying threes" but deep down, I knew something was off. Why were all the other kids at the playdate happily playing but she was clinging to my leg, or screaming at other kids? Why did her best friend suddenly become her enemy? Why did my kid who refused to snuggle for the longest time, suddenly need constant snuggling begging for me to always keep her safe? She was and still is constantly in fear that the event will reoccur (and it will) which in turn causes her to lose trust. If we as her family can't control those events, then why would she trust us? In her mind, we didn't keep her safe from it. People, places, smells can all remind her of her time spent in the hospital. She remembers so much, it actually blows our minds sometimes. Recently, she asked me about the trumpet Grandma bought her back in February of 2014 and proceeded to tell me where we were and how she got it. It just goes to show how much they remember. She can actually tell me who bought her what and when as early as her 1st Christmas. She knows patients by name from her first hospital stay. (I know, crazy) I investigated everything from ADHD to Sensory Processing Disorder. I drove myself crazy, letting my anxiety fuel all these random ideas and theories because I just wanted an answer.

  It was so obvious. She's been through more in her three years of living than I have encountered in my thirty years altogether. The average child goes to the Pediatrician, gets a shot and a checkup and is on their way. Some aren't as fortunate and see other kinds of doctors, and to those parents.....I feel for you, I do. Our daughter has been cut open more times than she can count, been immobilized multiple times, stayed in the hospital multiple times, has her own walker, has her scars named, been on more drugs than I care to share, missed events, holidays, playdates, and quite frankly too much time to just be a freaking kid. Of course she's traumatized. She can't even go to the "shoe helper" without being terrified and he is just fixing her shoe! Of course she's angry and regressing. I almost ignored it, telling myself,"It's a phase, she'll outgrow it." But she isn't. And it is proven in children who experience any sort of trauma, that if it is left untreated, the probability of more psychological issues arising later in life, increases dramatically. A traumatic experience can damage a child if left unspoken about so we decided to be proactive and get ahead of it. I am so thankful I actually listened to my gut. We want her to build resilience so she can face what has already happened and what will continue to happen. "Miss Lindsey" works with Norah now each week to help her sort through all of her triggers and emotions. I am thankful for that. I was never prepared after surgery for this. I was never prepared for the trauma she would encounter or how it would affect her, but I am thankful for help. I'm comforted knowing there is a plan for her.

We are in the midst of preparing for next year while dealing with this. Usually, I share a post after a Paley appointment, but our last appointment wasn't what we were expecting and I have just been trying to process it. We knew there would be an ankle surgery at some point for her, but didn't expect it to be done at the time of her lengthening surgery. Even though I knew it needed to happen, I felt really shocked and defeated in that moment when they told us. We were anticipating her walking the next day wearing her fixator, which is typical, but she will be immobile for 6 weeks in a cast for her ankle. I keep going back to carrying her at age 2 in a Spica for that amount of time and thinking of doing that with a 3 year old not only in a fixator but a cast just sounds terrible. We rented a home with a pool so she could do therapy, only to find out we will be staring at that pool for the first month and a half before she can get in. Kicking myself for that one. I'll save the details for the next surgery and what they need to do, in another post because it's just too much here.

For now, I am asking with the most genuine heart and warmest plea, forgive us. Forgive us when she snarls at you. Forgive us when she says, "I don't like people". Forgive us when our way may not seem sensible or right. Forgive us when we mess up and let her win and forgive us when we are not patient with her and should be. Forgive us when we have to leave or need to arrive early before you're ready, to get her adjusted. Forgive me when I disappear for a while. Forgive us when we are not okay, but should be (most people don't know the half of it) and forgive us when we need you too much.  Be kind to the child who melts down in public....you don't know if the battle he's facing is just over a piece of candy or if he is facing another battle. Teach your child about disabilities even if they don't have one. It's okay to ask. I love when kids are curious and it gives me a chance to explain it in front of Norah or listen to her explain it to them. However, I'll add it is not okay to refer to it as "cosmetic" (this hurts) or comment how "that's a great idea to make her taller!" That's just stupid. If you see a child that appears "different", either ask a basic question or smile and keep walking.  I'm not big on politically correct terms and frown at the constant criticism going on for not referring to things the right way or with the right terminology, but that one gets me. It is so far from cosmetic, I think that's why. Fellow PFFD parents and families, parents in general, family to us near and far, friends, people I have never met but are reading....let this either be a tool you use in your PFFD journey or a tool you use in your relationship with Norah.

I am sharing a link below if you are interested in reading. It not only gives you information if you think your child may be struggling to recover, but also gives information on how to help them through it. These are all very basic things that we also have learned in Play Therapy as well.

I'll write about the details for her next surgery in an upcoming post.
As always, thank you all near and far for your support and blessings to you and your families!


Thursday, January 22, 2015

A 3rd surgery for Norah

I'll start by saying, aside from a small hurdle, Norah is doing incredibly well. Really, she is. From a post hip surgery perspective, she is healing well, walking independently, running, climbing and is pretty much pain free with an occasional ache in her knee and hip area.  So this hurdle we face now doesn't affect that progress.

Unfortunately, with any major surgery, complications can arise. After her first surgery, during recovery at home we found a pretty decent size bulge in her abdomen. Dr.Paley alongside Dr.Cywes brought her back in for surgery to reattach the muscles to the bone. Sometimes after detaching it all during hip surgery, they can be weakened and detach themselves. Compared to what she went through prior to that, that surgery was minimal and she was on her feet within a few days.

Unfortunately, right before Christmas, we noticed another bulge in her stomach about a week after the 2nd surgery.  It failed. I was so upset that it didn't work and we would have to explain once again to her that she had to go back in. With it being right before the holidays, we kept it fairly quiet so we could all just focus on the progress she was making post hip surgery, rather than the fact that there was this cloud hanging over us. We will be headed to West Palm Beach early next week for surgery on Tuesday morning. They will go over exact details of the procedure with us prior to the surgery but they will most likely use a mesh to hold the muscles and tendons in place after reattaching them to the bone. We should only have to stay one night. It doesn't appear to bother her at all so that's a relief. I'm more concerned about a recent ankle roll she encountered a few days ago! The kid is constantly losing her balance now since surgery. Her gait is better and she walks so much better, but she is just so weak that she loses her footing constantly and rolls her ankle. She gets stronger everyday though.

Now that some time as passed, I feel like there is finally a little light at the end of the tunnel. I can actually see it and feel it. The last few weeks have been so much more normal and familiar. I feel out of the fog of it all. Just like every parent told us, it was the hardest surgery. I kept thinking, "They have to be right. This has to be the worst one. I don't think I can survive another like this or a worse surgery for her." Once it was over or nearly over, the 2nd surgery happened so we went into that one just completely devastated and defeated. We were tired, depressed and just worn out. I'm not sure I handled it as well as I thought I would. Rich was surprised at the misery we felt every single day. With this surgery, I do feel like I can handle it a little better. Rich also. We're not running on "E" anymore. She is back to her happy, spunky self and we're rested and taking steps toward dealing with it all so we can be better prepared for lengthening. It's an emotional grind that you just can't be ready for. I'll say, every time we go through something with her though, it brings out a new perspective. Every.single.time. There's something about going through all of this that connects me to her in an even deeper way. As if you can appreciate your kid any more than you already do, I appreciate her more. I enjoy long mornings at the playground a little more. I enjoy taking our time where we're at with what we're doing because I know what it's like to not be able to do those things. Reading that one extra book before bed, leaving the chores to go to yet another play date. :) We live outside now with our friends! All those things were out of reach for a while. Just to be able to put her in a swing again is amazing! Except when she's screaming, "higher!" Over and over again and you're already pushing it as high as it will go. :)

We hope this is just a minor setback and she can continue to progress and get to a full recovery.  I'll post another update after surgery. Until then, pray for Norah and her surgery please.  Pray for the surgeons to be thorough and for her to heal quickly with minimal pain.

Thank you all for your support! 
Blessings, Nikki

Wednesday, December 10, 2014

A successful 2nd surgery!


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.


Saturday, December 6, 2014

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.


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.


Monday, October 27, 2014

1ST Surgery (Hip)

I don't even know where to start. This is going to be unorganized and unedited because honestly, that is where I'm at currently.

I couldn't figure out if this post was going to be written for friends and family following our journey or to future parents and patients looking for answers and information. Again, unorganized.

Her 1st surgery is like a train coming head on. You can't stop it. We have spent the last two years living life as anyone else with a two year old would. We truly have not focused on her disability the way some people might. Sure, it's in the back of our minds, but the keyword is "back".  I can remember the conversation Rich and I had when she was just a baby. We agreed, we would not do that to her, or to us. We wouldn't spend endless amounts of time on forums or Google, crying over it or letting our lives revolve around it. We were successful. And I do encourage this to any parent of a special needs child. You don't want them thinking this is all they are, that this is what makes them who they are. There are a number of things that make up a person, not just one thing. And honestly, this wasn't something we had to work tirelessly at. It was quite easy actually. She does tons of things not despite her condition but simply because she's two and that's what she's supposed to do. She does things pretty darn normally, with the exception of having a brick on her left foot. :)

Lately though, it's here everyday like an annoying mosquito. Several times I've apologized to my husband for talking about it so often or crying to him about it. He has too. Surgery is just days away now. After a long, heartfelt, eye opening conversation with my cousin, I realized, this is okay. This is okay because this is our life right now. She is about to not only have surgery, but major surgery that will mark the first day in a very long, painful journey for her. It signifies a lot for our family.  It is the start of something we have been anticipating now for two years since God gave her to us. In our conversation I explained to her how important it was to me that we were never viewed as "attention seeking" or "self seeking". We discovered in our conversation something I had been praying over for a really long time. I was able to talk about scientific details and "surface" details with people, but I very rarely shared much more.  It took me months to even share the slightest detail with the women in my Bible Study group. I realized after praying so hard for God to give me the courage to ask people to pray for her, that it was because of this fear. The fear of people judging. Maybe they would think I wanted attention. I cannot stand this quality in people and I cannot stand it in myself if I find it there. There are too many people out there like that. I don't want to share what my daughter is going through and will go through in efforts that you'll feel sorry for me. I don't want to share a post or a photo of her or an update on her progress for attention seeking reasons. If I share something, it's because I want your support and most importantly your prayers. Or I want you to laugh at how insanely cute she is on a 4wheeler wearing an elephant costume. This past Wednesday, I truly realized that. I broke down in a room full of women at my church. I knew it was time. All I could think of at the time, was. "Gosh, I hope they don't think I'm a big baby". But they cried with me. So many women teared up as I shared my pain with them. My fears. I voiced things I hadn't voiced out loud before. The acceptance that I felt that day, confirmed my fear was completely irrational. They came over to me and every single one of them prayed over me and my family. It was probably one of the most memorable moments of my life. I left thinking, "what were you so afraid of?" They knew my heart. And that day, I knew it too. It's a very freeing feeling, to know your heart, to know that God knows your heart and really that's all that matters to you. I know my intentions with this blog now and with her entire journey.

One thing I'm excited about is being able to go back and read these and witness growth. I want her to see it also. I want her to see what she overcame. I've already done it actually. I look at what I'm writing now as opposed to what I wrote when she was born and I know my perspective is entirely different. It amazes me how God can take your trial and use it for something that will strengthen you. I pray that this first surgery does just that.

When we arrive and they take take her back, I will post an update with details for the surgery and when she will be out. For now, we are expected to do pre-op appts Tuesday, surgery early Wednesday morning and stay in the PICU after that until they feel she's ready to move. We will also know during surgery if he ended up doing her knee also or just the hip for now. For our fellow PFFD'ers, I am thinking of writing a post specifically with surgery details, packing lists, things we would do differently or encourage and tips we learn along the way for other Paley patients and parents.Or you can do what I do and call every parent you can get your hands on for advice. :)

I'd also like to give a really heartfelt thank you to all the people who have been so supportive during this whole process. Thank you for praying and caring about our family. Thank you for reading. Thank you friends for your text messages checking in, thank you for your gifts, cards and meals, thank you for your emails and messages, thank you to my Paley Moms and Dads for answering all my questions and being so available to us, thank you to River Run Church and my awesome ladies in Bible Study, our neighbors who rock LBV, our family for being so involved and helpful with all things, the Oviedo Moms Club, all of Rich's colleagues and fishing friends and everyone around us who is praying. Thank you. Keep praying!!!

Love to all,

Wednesday, July 16, 2014

Paley Visit 7/14 PRE-HIP SURGERY

I LOVE that we have a surgery date. I HATE that we have a surgery date.

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!

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!

Tuesday, June 10, 2014

It's that time again!

(I don't claim to be an English teacher or a writer, so please forgive my overuse of a period, my run on sentences and my incorrect punctuation.)

A mom shares her frustration:  “I’m exhausted, overwhelmed, and wiped out. My friends try to help but they just don’t understand. When I talk about my child’s illness, it makes them uncomfortable. Then I feel bad for burdening them. I feel so alone."  Adapted from an article by Lisa C. Greene

I read this article recently and couldn't help but relate to what this woman said. For a good while now, I haven't needed to talk about it. I haven't let it consume our daily lives. Not because I try not to, but because it really just hasn't been an issue. I say that happily. Norah so far, just truly hasn't been affected by her disability. When I say she does things normally, I mean it. Actually better than any of us would have anticipated. I watch her shuffle a soccer ball like nobody's business, shoe lift or no shoe lift. She is quite remarkably the fastest climber I know or have seen. She actually climbed the dishwasher the other day to get to her fish tank. Yes, climbed it like a miniature Spiderman. I find it pretty amazing that she has this unique physical impairment, yet our family has said it many times, "This is her skill. Her gift. She's going to be athletic." Now she's not even two...things can change, I know that. With most things she just right where she needs to be, but physically, the girl is talented. She's just so coordinated. Can you even comprehend what this means to a PFFD parent? It's like a child who can't read becoming a writer someday. It's just refreshing, beautiful and downright awesome. I say this not to boast about her. It's extremely humbling actually. I watch these kids do seriously incredible things everyday. I watch videos of children using their "new leg" for the first time, dancing, using a mobility board to get around while in a spica cast, climbing a tree with a prosthetic foot or a 4 inch shoe lift....it's just remarkable. Norah is remarkable. I tear up as I re-read that sentence and check for a spelling error. :) I tear up because it's here. How did I let so much time pass without any preparation? You fool.

I have intentionally avoided support groups, facebook pages, researching and any preparations regarding Norah's condition and future treatment.  It is extremely easy to r.s.v.p. to the biggest pity party you've ever been to if you allow yourself and if you allow it to consume you. This being the "Nikki Howes Pity Party" or (insert your name here). I told myself this over and over to a fault almost. I soon started to realize sometime around March that her surgery was this year. Now that it is June, the realization has come by storm that we visit Paley in just a few weeks to talk about final details for surgery and then sometime after her 2nd birthday in September, it's here. So I thought, "Wow, maybe there is a reason all these parents are researching carseats and discussing details 1-2 years in advance." I honestly thought it was a bit excessive and part of me even thought it was slightly dramatic. (I apologize) But here we are, insert foot in mouth and mind. :) I'm trying to put all the pieces of  this puzzle together now. I've learned that this comes in cycles, seasons even. It doesn't mean I never coped. It just means that I put it into a file in my brain, left it there and will now take it out and process it. I can't help but feel a bit foolish though for waiting until June to begin thinking about this.

Damn you Netflix!

With that said, I'm a mess. Just a big, sloppy, ranting, emotional mess. Not all the time. I'm not going to tip over, don't worry. I am fully capable of experiencing joy and choose it quite often in fact. :) There were TONS of times over the past year where it literally never crossed my mind. She would wear her shoes each day and it still didn't cross my mind. Lately though, we're encountering the things we knew would eventually occur. Her toes get little blisters, now that she is communicating, I hear "Owwww" alot while she points to her foot, she's beginning to protest when I reach for her brace and lifted shoes over her "regular" ones, she screams bloody murder when her feet are sweaty and she can't take her own socks off and all that girly drama that goes with a PFFD diagnosis. :) Because she has tiptoed so well over the last year, I've allowed it. She's close to not being able to do that anymore and its uncomfortable for her after a while anyway so we wear our shoes more frequently. This has prompted me to be more aware, ask more questions and make more phone calls. I think about this everyday now, multiple times per day. I HATE IT. I am not sure what to prepare for, what to ask, what to start working on...Pinterest surprisingly enough had about 4 pins relating to this. Can you believe that?! I have not even begun to process the lengthening. Honestly, I don't want to. I have zero interest in thinking about that. Right now I'm taking the "hip file" out and processing that one. How the heck do you operate on a leg that is the length of my forearm? It's just so tiny. I don't even want to know. It's like pregnancy all over again, except there isn't a book about it everywhere you turn.  How do you be a good Mom and prepare and be a warrior for your kid but block out the emotional baggage that doing that brings? How will I teach her to accept it, love herself and quite frankly get over it because this is how it is, if I'm crying everytime I have to call BlueCross. I had a dream the other night that Norah was older and didn't want to go outside. She came to me and said "Mommy, I am not going anywhere because everybody stares at me." She also had a 4 FOOT lift with a fixator on her leg..kind of funny how dreams are crazy like that. Anyway, I proceeded to put on mismatched shoes. A bright pink sneaker and a brown cowboy boot and said, "Let's go. Nobody is going to look at you because they will be looking at me." She smiled and  I woke up crying. I guess you can be a champion for your baby and just find a closet after they go to bed? Atleast that's my plan.

It's that time again. Shoes. UGGGGGHHHH, Shoes. I have to say, the PFFD Facebook page came through for me because after nearly 3 weeks of just trying to get ONE question answered by not only Blue Cross but Hangar Prosthetics also, I got an answer from several parents. More than several in fact. YOU GUYS ROCK. I also lucked out and walked into Payless WITH a toddler in tow and found 2 pairs of shoes on sale in less than 10 minutes. That never happens. Thanks to all our fellow PFFD friends and family and local friends and family, I did find several Shoe Cobblers (yes honey, I said it) nearby that are much less expensive. It is incredible how generous people have been, handing down shoes and offering ideas, information and support. Norah's currently sporting her 2nd cousin Zoey's old shoes, that have become a favorite so it just goes to show how one
person's "old" is another person's "new". They actually look brand new. (Thanks Lindz)

As I finish this post, I keep going back to what I said about procrastinating and feeling like a fool for just now preparing for something so big in our lives. I realize, I have prepared. I have prepared in a way that will get us through this whole thing like warriors. I have prepared spiritually. If you aren't a believer, it's okay, keep reading anyway. You owe it to Norah. :) Since Norah's birth, we found our church "home", River Run Christian Church, I found a Women's Bible Study group that has taken my heart to an entirely new level and my faith and love for the Lord has never been stronger. Truly. I had never really read the Bible before her. I studied scriptures here and there and prayed often and tried to be Christ-like but He is so much a part of my day, all day, everyday that dealing with this whole thing is entirely different. It's easier. I can be a mess right now and can cry at times during the day when I let my mind wander and know that it's alright. There is a scripture for EVERYTHING. They are all over our house. Post-its everywhere helping me and guiding me through my life. The Bible is seriously cool..I mean it's a handbook for your life. We read handbooks on fixing things around our home, why not our lives? I have let a lot of things go that pull me from my relationship with God and sought out things that draw me nearer. All of this prepares me for her treatment. It prepares me and strengthens me for the pain. There is no time for drama, no time for wasted emotions because it takes from Norah. Rich and I are stronger than ever because we have to be. Hard times bring us closer now. We need each other and lean on each other because we are weak. We seek out God because we are weak. And He is just equipping us, equipping our marriage and our family for a task that goes beyond our control. I can write everything I wrote, every complaint, every annoyance, every bit of thanks knowing where it all leads. My faith doesn't mean I'm happy and joyful all the time. I'm human.  It just means that I know I am weak and need guidance. I know when I am worrying, sad, anxious, overwhelmed, or tempted by what I WANT to feel about this pain, that I have a place to go. A place to go that tells me what is right. And right now, it's telling me to go get my girl and squeeze her tight because she's awake from her nap. :)
Smart gal :)
I am preparing a list of things to accomplish before the Fall. If you have any ideas or suggestions, please feel free to email me or comment or facebook message me. I have recently begun researching mobility boards for spica casts, activity tables for her to use while immobile, carseats, strollers and things like that, so if you have any advice on those things also I would really appreciate it!
As always, thank you to our family and friends, PFFD families and friends and all your kids for inspiring us. It's your videos, blogs and posts that help get us through.