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,
Nikki
Monday, October 27, 2014
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!
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!
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!
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. :)
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!
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 :) |
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.
Blessings,
Nikki
Wednesday, December 11, 2013
15 month Paley appt
Sometimes you just need to let off a little steam. First off, I write this with a very sick baby asleep in her bed. I should have about 20 before she wakes again. Poor thing. As if spending the day from 9-7 at the doctor yesterday wasn't enough for her, you have to throw a whatever this is vomit fest on top of it. Were in the double digits now as far as how many times we've changed her and her sheets. I'm out of sheets! I think we can all agree when you're a Mommy, watching your baby battle illness is just about the worst thing. She's not a cuddler either. We compare her to our dog "Ikey B". You have to earn his love. He doesn't give up cuddles freely. RooRoo on the other hand, well she will drive you crazy because she's starved for affection. Lately, Norah is more like Roo. That's how you know she's really sick. All she wants to do is lay on my chest and be held and cuddled. It's very bittersweet.
Monday was uneventful. That's a very good thing.
We started with X-rays and she did surprisingly well. It's not easy to control a 1 year old especially when you're tugging on their legs. Rich and I took turns roaming the halls with her and looking at all the pictures once the playroom began to bore her. We met a lot of families and children while we waited. You tend to make friends almost immediately at this place. It's not like the usual where you go in, wait, wait some more and dive into your phone the entire time. You are constantly beginning a new conversation with a parent, speaking about your kids and what you may have in common with one another and where you're from or chasing your kid before she goes into a restricted area. :) However, the mood was a little different this time. I spoke with numerous people and honestly I felt like it was a competition. It made me very uncomfortable. Not everyone we encountered was this way, but the ones that were, we steered clear of.
Who's kid had it worse?
I will be the first to say, I am so humbled by the fact that we have it much easier than most, but it doesn't change the fact that what she will go through, no child should have to go through. Almost every time I opened my mouth it was as if they were waiting for me to stop speaking so they could quickly trample it with, "Well mine had this, or mine had that so it's much worse."
Respectfully, Get over yourself. No, really.
I am a smart woman (sometimes) and I see right through it. And I try to never do that to people. Being supportive means truly listening, not making it at all about you. When they are finished and they would like to know about anything we are going through, then I will tell them. I do it very matter-of-factly as well so I am not making ours seem less or more and likewise for their situation. If they don't ask, they don't really want to know. This applies to life in general.We are all here doing the same thing, seeing the same doctor so let's just be good listeners and be supportive of each other. I cannot stand when you try to uplift someone and they point no where but South. I get it. We all have our dark moments. I know them too well. Wanting someone to think it's worse or feel worse for you....well I just will never be able to understand those types of people. What I am learning is you can find strength in your weakness during those dark moments. The tiny bit of strength you have left may inspire another parent or bring comfort to a sweet child going through the pain. It amazes me all the time how I can write an email or post, or speak to a parent during my absolute breaking point and hear, "Thank you. This really helped me." No, thank YOU. You kept me from having a pity party so God Bless You! This entire experience is very humbling. I know so many others have it far worse than my baby girl. I see it everyday and even more so when we are waiting to see Dr. Paley. He has even said multiple times that he sees extreme cases everyday and Norah does not fall into that category. I thank the Lord for that every single day.
After about 4 hours of waiting, I said to my husband, "This is about the only place you can go and wait this long and still greet the doctor with a smile." This guy has it made.
There is no way with what he will do for us, that we would go in with anything less than open ears and a friendly demeanor. With that said, we saw him finally around 4. We got there at noon. :) Norah went in smiling, so we did too. A team of physicians entered the room and as humans I think we are hardwired to assume the worst. Nope, Superman was just training the world on what he does best. He reviewed her X-rays as she babbled back and forth with him. Considering she had no nap, anything other than crying was a relief. As expected, she will do her Hip surgery next year. There are multiple levels to this, and her case is very minimal so she will have a Pelvic Osteotomy. This is a lower grade surgery compared to a super hip surgery. Her hip is good, it just needs work so it's not a full reconstruction like the other. HUGE RELIEF. I immediately assumed the time in a Spica cast would be shorter because of this, but I was wrong. She still has to be immobilized in the Spica cast for 6 weeks. But in Paley's words, this is minimal compared to the rest of the stuff she will do, so that is both comforting and daunting at the same time. A week or so for surgery, come home, back in 2 weeks and you're good to go. Our goal is to schedule this mid October to early November this upcoming year so hopefully she is well for Christmas. This will all depend on Paley's schedule and assuming everything goes perfect. This whole conversation with him was such a humbling moment. The fact that we can drive there, do the surgery, stay a short time and come home is just crazy. More than half the families there have to board a plane, rent a house and all of the above. That's not an easy thing. Not to mention, they do that while their baby is having a Super Hip 1 or 2 or Super Knee so you throw emotion into it also. So you see? I know my kid has it "easy." If that's what you want to call it.
He reviewed her discrepancy with us again. Same as the last time. Two lengthenings are predicted. We will know more of an exact number with a standing X-ray in 6 months. She will most likely be in a 3-4in shoe lift by this next time year. It's difficult to picture, but I've seen kids with much higher ones and not to brag, but Norah dominates her shoe lift. It doesn't phase her a bit. Her upper thigh bone (femur) and lower leg bones (fibula and tibia) are all short. So we discussed rather than put an external fixator on both the top and bottom, we could possibly just stunt the growth in the right leg since the tibia discrepancy is minimal. That procedure is very minor in the grand scheme of things. He also spoke of her knee and that if it needed any work he could look at that when he's in there and make any tweaks he feels are necessary rather than do a separate knee surgery. I was sold on that for sure. Rich and I decided we would wait until after her 3rd birthday when she's about 3 1/2 to do her first lengthening, so about May of 2015. She has to be at least 1 year out of hip surgery. We originally thought the Fall season but decided to spend the Summer in West Palm Beach at that time. :) Two lengthenings....another humbling moment.
So even though the mood there wasn't as uplifting as the last, our family as a whole was uplifted, so that's all that matters to me. Not everyone will bring a smile to your face, some will stress you more than help you and people will say the wrong thing sometimes. It happens. Leaving there feeling humbled though, I can't even explain it. To be in our situation and be able to appreciate it, well that's just God's healing right there. If you can find a better explanation, I'm all ears. And I'll sure pray for you while you try to. We left with a definitive timeline and no good news or bad news so I'd give it a gold star.
On top of that, we got to hand Dr.Paley our first fundraising check. Quite a few donations have already been made and a lot of pledges have been made as well to participate in our "Classic fundraiser". We plan to raise a lot more for the foundation between now and February. So to those that participated in the recent raffles at Rich's tournaments and all of the businesses and sponsors that have donated prizes and product, thank you so much for your generosity. Every single proceed goes directly to the Paley Foundation. It's not too late to participate in the fundraiser if you'd like to. Visit www.fishingforthekids.com and you can donate now or make a pledge and have some fun while rooting for Rich! For every fish he catches, you can pledge a specific dollar amount per fish and at the end of the tournament we will donate every single dollar to The Paley Foundation. All of the details are on the website if you'd like to check it out. THANK YOU, THANK YOU, THANKYOU!
As always, thanks to all who read and keep up with our updates and care so much about Norah. She is a lucky little girl to have so many people care about her and support her!
Monday was uneventful. That's a very good thing.
We started with X-rays and she did surprisingly well. It's not easy to control a 1 year old especially when you're tugging on their legs. Rich and I took turns roaming the halls with her and looking at all the pictures once the playroom began to bore her. We met a lot of families and children while we waited. You tend to make friends almost immediately at this place. It's not like the usual where you go in, wait, wait some more and dive into your phone the entire time. You are constantly beginning a new conversation with a parent, speaking about your kids and what you may have in common with one another and where you're from or chasing your kid before she goes into a restricted area. :) However, the mood was a little different this time. I spoke with numerous people and honestly I felt like it was a competition. It made me very uncomfortable. Not everyone we encountered was this way, but the ones that were, we steered clear of.
Who's kid had it worse?
I will be the first to say, I am so humbled by the fact that we have it much easier than most, but it doesn't change the fact that what she will go through, no child should have to go through. Almost every time I opened my mouth it was as if they were waiting for me to stop speaking so they could quickly trample it with, "Well mine had this, or mine had that so it's much worse."
Respectfully, Get over yourself. No, really.
I am a smart woman (sometimes) and I see right through it. And I try to never do that to people. Being supportive means truly listening, not making it at all about you. When they are finished and they would like to know about anything we are going through, then I will tell them. I do it very matter-of-factly as well so I am not making ours seem less or more and likewise for their situation. If they don't ask, they don't really want to know. This applies to life in general.We are all here doing the same thing, seeing the same doctor so let's just be good listeners and be supportive of each other. I cannot stand when you try to uplift someone and they point no where but South. I get it. We all have our dark moments. I know them too well. Wanting someone to think it's worse or feel worse for you....well I just will never be able to understand those types of people. What I am learning is you can find strength in your weakness during those dark moments. The tiny bit of strength you have left may inspire another parent or bring comfort to a sweet child going through the pain. It amazes me all the time how I can write an email or post, or speak to a parent during my absolute breaking point and hear, "Thank you. This really helped me." No, thank YOU. You kept me from having a pity party so God Bless You! This entire experience is very humbling. I know so many others have it far worse than my baby girl. I see it everyday and even more so when we are waiting to see Dr. Paley. He has even said multiple times that he sees extreme cases everyday and Norah does not fall into that category. I thank the Lord for that every single day.
After about 4 hours of waiting, I said to my husband, "This is about the only place you can go and wait this long and still greet the doctor with a smile." This guy has it made.
There is no way with what he will do for us, that we would go in with anything less than open ears and a friendly demeanor. With that said, we saw him finally around 4. We got there at noon. :) Norah went in smiling, so we did too. A team of physicians entered the room and as humans I think we are hardwired to assume the worst. Nope, Superman was just training the world on what he does best. He reviewed her X-rays as she babbled back and forth with him. Considering she had no nap, anything other than crying was a relief. As expected, she will do her Hip surgery next year. There are multiple levels to this, and her case is very minimal so she will have a Pelvic Osteotomy. This is a lower grade surgery compared to a super hip surgery. Her hip is good, it just needs work so it's not a full reconstruction like the other. HUGE RELIEF. I immediately assumed the time in a Spica cast would be shorter because of this, but I was wrong. She still has to be immobilized in the Spica cast for 6 weeks. But in Paley's words, this is minimal compared to the rest of the stuff she will do, so that is both comforting and daunting at the same time. A week or so for surgery, come home, back in 2 weeks and you're good to go. Our goal is to schedule this mid October to early November this upcoming year so hopefully she is well for Christmas. This will all depend on Paley's schedule and assuming everything goes perfect. This whole conversation with him was such a humbling moment. The fact that we can drive there, do the surgery, stay a short time and come home is just crazy. More than half the families there have to board a plane, rent a house and all of the above. That's not an easy thing. Not to mention, they do that while their baby is having a Super Hip 1 or 2 or Super Knee so you throw emotion into it also. So you see? I know my kid has it "easy." If that's what you want to call it.
He reviewed her discrepancy with us again. Same as the last time. Two lengthenings are predicted. We will know more of an exact number with a standing X-ray in 6 months. She will most likely be in a 3-4in shoe lift by this next time year. It's difficult to picture, but I've seen kids with much higher ones and not to brag, but Norah dominates her shoe lift. It doesn't phase her a bit. Her upper thigh bone (femur) and lower leg bones (fibula and tibia) are all short. So we discussed rather than put an external fixator on both the top and bottom, we could possibly just stunt the growth in the right leg since the tibia discrepancy is minimal. That procedure is very minor in the grand scheme of things. He also spoke of her knee and that if it needed any work he could look at that when he's in there and make any tweaks he feels are necessary rather than do a separate knee surgery. I was sold on that for sure. Rich and I decided we would wait until after her 3rd birthday when she's about 3 1/2 to do her first lengthening, so about May of 2015. She has to be at least 1 year out of hip surgery. We originally thought the Fall season but decided to spend the Summer in West Palm Beach at that time. :) Two lengthenings....another humbling moment.
So even though the mood there wasn't as uplifting as the last, our family as a whole was uplifted, so that's all that matters to me. Not everyone will bring a smile to your face, some will stress you more than help you and people will say the wrong thing sometimes. It happens. Leaving there feeling humbled though, I can't even explain it. To be in our situation and be able to appreciate it, well that's just God's healing right there. If you can find a better explanation, I'm all ears. And I'll sure pray for you while you try to. We left with a definitive timeline and no good news or bad news so I'd give it a gold star.
On top of that, we got to hand Dr.Paley our first fundraising check. Quite a few donations have already been made and a lot of pledges have been made as well to participate in our "Classic fundraiser". We plan to raise a lot more for the foundation between now and February. So to those that participated in the recent raffles at Rich's tournaments and all of the businesses and sponsors that have donated prizes and product, thank you so much for your generosity. Every single proceed goes directly to the Paley Foundation. It's not too late to participate in the fundraiser if you'd like to. Visit www.fishingforthekids.com and you can donate now or make a pledge and have some fun while rooting for Rich! For every fish he catches, you can pledge a specific dollar amount per fish and at the end of the tournament we will donate every single dollar to The Paley Foundation. All of the details are on the website if you'd like to check it out. THANK YOU, THANK YOU, THANKYOU!
As always, thanks to all who read and keep up with our updates and care so much about Norah. She is a lucky little girl to have so many people care about her and support her!
Friday, October 18, 2013
Friday, October 11, 2013
Lions and Tigers and Shoe Lifts....Oh My.
Recap: The last time I wrote was in June when Norah met Dr. Paley for the 1st time. Since that appointment, she has achieved all of the things he said she would. She's standing, cruising, crawling and taking steps just like any other kid. He instructed us to wait for a cruiser and then begin the shoe lift process.
I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.
Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.
We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"
And then I cried. Alot.
So we waited.
Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.
With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.
1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.
or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."
See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.
So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.
But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.
So you see? How can I complain about her condition when I have all of that? You tell me.
If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!
I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.
Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.
We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"
And then I cried. Alot.
So we waited.
Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.
With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.
1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.
or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."
See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.
So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.
But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.
So you see? How can I complain about her condition when I have all of that? You tell me.
If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!
Sunday, June 16, 2013
Paley 1st Appointment Part 2: THE PLAN
First off, this one is long.....so have a seat.
We arrived in West Palm eager and ready for our appointment with Dr.Paley. When we arrived in the morning, Rich joked that we were like rockstars walking in as everyone shouted, "Norah! Norah!" like they already knew her and immediately came over to us with warm welcomes and hugs. He had been communicating with them since the week we brought her home so there was already a friendship there which made things a little easier. I on the other hand went in a bit nervous, a little queasy and no surprise....a bit protective of my baby. I had managed to hold it together pretty darn well until I caught a glimpse of the first of many patients we would see that day and lost my cool. Interestingly enough, he didn't have fixators on his legs like Norah would. He had them on both arms. Shortly after, we met a woman from Florida with them on her lower legs, then a little boy from Kansas who had just undergone the Super Ankle Surgery (quickly became great pals with my girl) and a young girl from Poland with one on her right leg. Needless to say, I felt like I was diving right in....there was no sitting on the edge of the steps and easing into the water nonsense. It was all in the minute we walked through that door.
We were surprised to see there was no helicopter pad or red carpet and Dr.Paley didn't come through a big wave of fog or anything.....just a normal doctor's office. :) Rich and I both had psyched ourselves up as many other parents seem to do as well and then you arrive and it's like, "okay, no big deal, just another hospital." I know at some point another family will read this and believe me, that statement will bring you comfort. When you just go in, fill out the usual paperwork, do your x-rays and wait for the Big Man, it feels normal. Like there's nothing special or scary about it. And trust me, while you're there, the more normal it feels, the easier it will be for you to not throw up your breakfast in the nearest trash can.
Norah and I played with little J.T. from Kansas while waiting. She had a BLAST with this kid. They were literally playing Tug-O-War over her piano, so cute!
After several hours of x-rays, playtime and waiting, we were pleased to see him by 2 o'clock. Like everyone has told us the last 9 months. "Worth the wait." He came in and gave us a warm welcome, shook our hands and got right down to business. Now I'm going to get scientific....
Her official diagnosis is Congenital Femoral Deficiency (C.F.D.) Type 1A and Fibular Hemimelia. Type1A is the best case you can have so that's great news. Her left femur (upper thigh bone) is shorter than her right as well as her lower Fibula and Tibia (lower leg bones) are shorter also. Her leg length discrepancy is anticipated to be 17.8cm or 7-8 inches at full skeletal maturity. This doesn't include the foot so maybe a tad more. When she begins to stand we can get a more accurate number. This means that if we do nothing her left leg would be 7-8 inches shorter than her right, prohibiting her from putting both feet on the ground.
Her treatment plan works in two phases. Preparation Phase and Lengthening Phase. Preparation would mean any surgery on any joints prior to leg lengthening to ensure all are strong and stabile. Lengthening would be the actual leg lengthening process which would most likely be accomplished in 2 lengthenings. (2 is awesome news) We were really hoping to avoid a Hip Surgery mainly because that occurs at age 2 and just the thought of a 2 year old under anesthesia makes me sick to my stomach, however that most likely won't be avoided. The good news about that though is he didn't see any glaring evidence that she will need the Super Hip Surgery which is more complex. She would be doing the Pelvic Osteotomy. This surgery from a patient standpoint is pretty much the same but from a technical/surgical standpoint, it is less involved. So thumbs up on no SuperHip and thumbs down on Pelvic Osteotomy. Her knee looked good, although she was born without an ACL or PCL. This is a minor detail in this case though. Her ankle is rotated so it is quite possible we would need an Ankle surgery as well. We didn't dive into details on that because it so far down the road.
At age 3, we would begin lengthening. For girls, half of the length discrepancy appears in the first 3 years. So this means by age 3, her left leg would already be roughly 3-4 inches shorter than her right. Then, from 3 to say 10 to 13 year old age the last 3-4 inches would be visible at a much slower pace. So after the 1st lengthening she would most likely gain 3 inches from that and it would appear as though her legs were almost the same length. Then over the next 7 years, the remaining 3-4 inch discrepancy would be visible and we would do our final lengthening at age 10. Lengthening takes 8 months. So after her prep surgeries and 1st lengthening she would have some "time off" until about age 10 where we would complete her last surgery/lengthening. What does that mean?
OUR LITTLE GIRL WILL HAVE BOTH FEET ON THE GROUND!
She will run, play, dance and do all the things other kids do. Even while undergoing this process,she will be able to swim and play in her fixators. In fact, you see alot of CFD patients swimming alot because it keeps the pins clean. Below are some photos "Before and After" and other kids coping with CFD.
http://paleyinstitute.org/?q=intro-to-limb-lengthening (This link explains the lengthening process very clearly if you have questions as to how they actually lengthen her leg)
We return in December to get more accurate x-rays of the hip. It can still continue to ossify until then, so there is a small chance the hip may be in good shape by then. He will examine her standing up as well and further confirm our plan.
We arrived in West Palm eager and ready for our appointment with Dr.Paley. When we arrived in the morning, Rich joked that we were like rockstars walking in as everyone shouted, "Norah! Norah!" like they already knew her and immediately came over to us with warm welcomes and hugs. He had been communicating with them since the week we brought her home so there was already a friendship there which made things a little easier. I on the other hand went in a bit nervous, a little queasy and no surprise....a bit protective of my baby. I had managed to hold it together pretty darn well until I caught a glimpse of the first of many patients we would see that day and lost my cool. Interestingly enough, he didn't have fixators on his legs like Norah would. He had them on both arms. Shortly after, we met a woman from Florida with them on her lower legs, then a little boy from Kansas who had just undergone the Super Ankle Surgery (quickly became great pals with my girl) and a young girl from Poland with one on her right leg. Needless to say, I felt like I was diving right in....there was no sitting on the edge of the steps and easing into the water nonsense. It was all in the minute we walked through that door.
We were surprised to see there was no helicopter pad or red carpet and Dr.Paley didn't come through a big wave of fog or anything.....just a normal doctor's office. :) Rich and I both had psyched ourselves up as many other parents seem to do as well and then you arrive and it's like, "okay, no big deal, just another hospital." I know at some point another family will read this and believe me, that statement will bring you comfort. When you just go in, fill out the usual paperwork, do your x-rays and wait for the Big Man, it feels normal. Like there's nothing special or scary about it. And trust me, while you're there, the more normal it feels, the easier it will be for you to not throw up your breakfast in the nearest trash can.
Norah and I played with little J.T. from Kansas while waiting. She had a BLAST with this kid. They were literally playing Tug-O-War over her piano, so cute!
 |
| Norah and fellow Paley patient "J.T." playing in the waiting room. |
After several hours of x-rays, playtime and waiting, we were pleased to see him by 2 o'clock. Like everyone has told us the last 9 months. "Worth the wait." He came in and gave us a warm welcome, shook our hands and got right down to business. Now I'm going to get scientific....
Her official diagnosis is Congenital Femoral Deficiency (C.F.D.) Type 1A and Fibular Hemimelia. Type1A is the best case you can have so that's great news. Her left femur (upper thigh bone) is shorter than her right as well as her lower Fibula and Tibia (lower leg bones) are shorter also. Her leg length discrepancy is anticipated to be 17.8cm or 7-8 inches at full skeletal maturity. This doesn't include the foot so maybe a tad more. When she begins to stand we can get a more accurate number. This means that if we do nothing her left leg would be 7-8 inches shorter than her right, prohibiting her from putting both feet on the ground.
Her treatment plan works in two phases. Preparation Phase and Lengthening Phase. Preparation would mean any surgery on any joints prior to leg lengthening to ensure all are strong and stabile. Lengthening would be the actual leg lengthening process which would most likely be accomplished in 2 lengthenings. (2 is awesome news) We were really hoping to avoid a Hip Surgery mainly because that occurs at age 2 and just the thought of a 2 year old under anesthesia makes me sick to my stomach, however that most likely won't be avoided. The good news about that though is he didn't see any glaring evidence that she will need the Super Hip Surgery which is more complex. She would be doing the Pelvic Osteotomy. This surgery from a patient standpoint is pretty much the same but from a technical/surgical standpoint, it is less involved. So thumbs up on no SuperHip and thumbs down on Pelvic Osteotomy. Her knee looked good, although she was born without an ACL or PCL. This is a minor detail in this case though. Her ankle is rotated so it is quite possible we would need an Ankle surgery as well. We didn't dive into details on that because it so far down the road.
At age 3, we would begin lengthening. For girls, half of the length discrepancy appears in the first 3 years. So this means by age 3, her left leg would already be roughly 3-4 inches shorter than her right. Then, from 3 to say 10 to 13 year old age the last 3-4 inches would be visible at a much slower pace. So after the 1st lengthening she would most likely gain 3 inches from that and it would appear as though her legs were almost the same length. Then over the next 7 years, the remaining 3-4 inch discrepancy would be visible and we would do our final lengthening at age 10. Lengthening takes 8 months. So after her prep surgeries and 1st lengthening she would have some "time off" until about age 10 where we would complete her last surgery/lengthening. What does that mean?
OUR LITTLE GIRL WILL HAVE BOTH FEET ON THE GROUND!
She will run, play, dance and do all the things other kids do. Even while undergoing this process,she will be able to swim and play in her fixators. In fact, you see alot of CFD patients swimming alot because it keeps the pins clean. Below are some photos "Before and After" and other kids coping with CFD.
| Before | After |
 |  |
http://paleyinstitute.org/?q=intro-to-limb-lengthening (This link explains the lengthening process very clearly if you have questions as to how they actually lengthen her leg)
With that said, it became pretty clear to us on the way home that this process was the right decision for her. Amputation is just crazy talk and a Prosthetic Leg was a consideration of ours for a while she but unnecessary. If she was going to spend her entire childhood in a surgical room, maybe we would consider that. I know there are other extreme cases where those options are the best route but in Norah's case, it just doesn't make sense for us. If we can give her the ability to walk with her own two legs ,that is the best thing we can do. Most of this will happen at such a young age that she wont even remember it. Sure she will remember her fixators at age 5 or 6 because she will be wearing them well into her teen years, but she wont remember the surgery itself.
For now, the treatment plan is a shoe lift and ankle brace until we begin the process. When Norah begins to stand on her own and begins cruising furniture then we will have special shoes designed to help her walk. The brace will help keep her ankle from twisting and rolling due to the platform. They will look a little bit like this:
 |
| This is Rory. Following her story has helped us SO much. You can read more about her at roryjane.com |
Jennifer, the Patient Coodinator took these pictures during our visit. She was super friendly!
All in all, we were pretty relieved when we left. To have a plan, answers and meet the man who will perform her surgeries was comforting. Rich reminded me of something on the way home. "God doesn't make mistakes", he said. He reminded me of that and that he has entrusted her with us and chosen us to be her parents. He knew we could handle this and that we would do something amazing with it. Who knows what the mission is or what she will do,but I believe it will be something remarkable, simply amazing. The less I focus on "this happening to her" and the more I focus on the blessing and how this will forever change her in the most humbling and beautiful way, the better Mom I am to her. I don't want to be angry about it. It is so exhausting being so angry and so wonderful when I just appreciate how beautiful she is.
My husband and I will be launching an INCREDIBLE fundraiser for The Paley Foundation very soon. As some of you know, he accomplished his greatest fishing achievement so far: Qualifying for the BASSMASTER CLASSIC 2014. This was a huge game changer for our family. You can support this cause by betting on my husband! You can donate an amount of your choice per pound of fish caught at The Bassmaster Classic 2014 or donate directly to the foundation once we post it. We will be posting website details and information soon and the fundraiser will be alot of fun! STAY TUNED!
As always, thank you all so much for your continued support through this. It means alot to us.
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