Knee Appointment Wednesday

Our next step was a knee appointment for Norah on Wednesday, January 23, 2013.

The last two months were more of a waiting period to observe the development of her knee.The goal was to see if it would relax and extend more on its own, if not, then we would begin some therapy to help with that. We are pleased to have received the following diagnosis:

*After her knee x-ray, he noticed a small bow in her knee that may straighten out over time or maybe not. Either way, with the lengthening procedure in the future, this is a small concern. She has an actual knee bone which is awesome because in some cases like hers, a bone may not even be present. Although her left leg is stiff and cannot extend the same as her right leg, he noticed she was kicking and squirming just as any other baby would so continue what we are doing with her as far as playtime is concerned.

*After her hip x-ray (which she protested greatly and broke Mommy's heart) we were so pleased to see her hip having some ossification present. In babies, the cartilage does not transition into bone until ages 6-9 months. So we were very happy to see that the process has atleast begun with her hip. We are very hopeful that she may be able to avoid having hip surgery, but we will not know for sure until her cartilage has turned to bone at age 9 months. At that point we will know if her hip is indeed "normal".

*We return to the Orthopedic in 4 months (WAHOO!) after meeting Dr. Paley first. We plan to meet him in June and go back to Orlando Orthopedic shortly after. It will be nice to have the next 5 months "off" from doctors pertaining to her leg. Once we meet Dr.Paley's group, we will have a timeline and exact diagnosis and will take that to Orlando Orthopedic to do the same.

We are so very blessed to have this news! We are so happy to be able to just enjoy her as a baby and watch her grow and change. She is now rolling over back and forth, kicking, babbling like crazy, laughing, beginning to scoot, sitting upright with assistance and excessively drooling. :) It is so comforting to see her meeting her milestones without any delays. Here are some pictures of Norah enjoying some playtime!

Right before rolling over

Rolling back and forth on the patient table at her appointment!

By faith....

I finally listened as He spoke to me. Earlier this week, He came into my heart because I finally let him. I cry as I write this because it feels so incredibly good to feel this way again. In my last entry, I spoke of my emotions and the struggles I was having and then a little birdie reminded me of something great.

The "DIWE Train".

Doctrine
Intellect
Will
Emotion

I was leading my life 100% based on my emotions and shutting God out of it...something I hadn't done for a long time since coming to the Lord. Rich and I always try to lead our lives based on God's word before we incorporate our own thoughts and emotions. I seemed to have forgotten that. I re-read this scripture OVER and OVER.

Proverbs 3:6  "Trust in the Lord with all your heart, And lean not on your own understanding. In all your ways acknowledge Him, And he will direct your path."

If I trust Him with only certain things, then I am not fully trusting and having faith. You don't get to pick and choose. For the last eight months, I have been completely consumed by worry, guilt and anxiety. From bedrest to childbirth to parenthood, I made those times so much more difficult. Hormones can't be to blame for everything. :) (maybe half?) I went as far as acupuncture to remedy my worry. I changed my diet, took special herbs and finally one morning, I let Him back in. I haven't felt that good in a LONG time. With all my worry I am saying I don't trust God fully. It robs you of your power to live. I'm learning again that it is okay to ponder something or have a prayerful concern, but it is a sin to constantly worry about something. Once you begin to lose your peace, you're venturing into worry which is just plain wrong. By faith, I have found myself again. With faith, you can understand all kinds of things that your head can't. I may not like the way something is or why God is doing what He's doing but I know He's working.

Gradually, I've begun to think about Norah's leg with a different perspective. She is Amazing...no, seriously...Amazing. She is so vocal and such a fast learner and is doing things I don't think her Dad and I expected to happen so soon. I think of why He chose us to be her parents and I understand now. She is ours and we are hers. God blessed me with a strong man who provides for us and protects us. Because of him, she will have the care she needs and also have her Mommy at home and I will have the ability to have her treatment be my first priority. God knew we had a huge family filled with people that want to shower her with love and care. He knew she would be raised to know Him and honor Him. He knew we would take care of her. She may be physically disabled but her heart is whole. She will love, laugh, play, make messes and we will cherish all of it. I think because of it, we will enjoy life with her even more. We won't take those messes for granted because she's able to make them.

It is entirely coincidental that the year is ending and 2013 is approaching. It is also a coincidence that I am writing this on December 31, 2012, the last day of the year. :) It just hit me that this is the time for New Year's resolutions, but that is not what this is. This is simply me just recognizing what I already had. The path I have chosen is much brighter then the one I was on. I hate to think about all of the precious time I have wasted this year on worry, but all I can do is keep walking this path and devote myself to allow His grace to touch my heart. I trust that in the times of doubt, I will pray as I used to and turn toward Him instead of my own thinking. I want to devote myself to reinvesting in my relationships that I have begun to take for granted. My marriage, friendships and family relationships have all taken a backseat because of my worry and fear throughout my pregnancy and my daughter's condition and I am deeply sorry. As we move into the New Year, I plan to let the Lord lead me as He led me to my wonderful husband and our beautiful, perfect little angel.

Happy New Year to our friends, family near and far and to all the fellow PFFD'ers in treatment or about to begin treatment. We wish you all blessings and great health this year. :)

All the questions in my mind

To homeschool or not? To vaccinate or not? Do we need to go 100% organic or not? Can I keep her in a bubble forever? Probably not.

These are all questions running the marathon in my mind since becoming a mother. It seems like everytime I make a teeny, tiny step forward toward becoming less protective of her, I take two very large steps backward. Yes, I know feeling protective of your child is a completely natural thing, but the protectiveness I feel is suffocating.  Between the Movie Theatre massacre, the recent shooting in Connecticut, the brutal massacre in China at an elementary school and the constant news coverage on harmful chemicals in cleaning products, food, you name it, I can't seem to make a step and stay there. I reach the mile marker and then something tragic happens and I feel overwhelmed with fear again. This doesn't even include the neighbors and friends that have a sick child or have recently lost their child....that makes me cling to her even more as I am sure alot of parents nearby are doing as well. I have family in Connecticut that live nearby to where the  recent shooting took place. Too close to home it feels.

I used to take alot of things with a grain of salt. I was able to handle conflict, atleast I remember I could, but that feels like forever ago. I could process a tragic event, difficult situation, annoying opinion or any emotion for that matter with balance and logic. I want to be back there so badly.

Now I am happy to say, I am not protective in a way that smothers her or clouds her development. She is an extremely playful and happy child and I know it is because she is showered with love and respect. We respect her need to learn on her own and explore things through sight and touch. We teach her to reach for things on her own and encourage her to speak back to us among many other things. One of my main goals is not to become a parent that does EVERYTHING for my child. I want her to feel capable. I want her to carry her own plate and wash her own hands and entertain herself with her toys and so far I feel really confident we have encouraged independence (as much as you can with a 3 month old). She plays alone often and puts herself to sleep when she is wide awake. (Without crying which I am proud to say!) We don't overreact if she sneezes or call the pedicatrician every week. These are things that reassure me I am not smothering her. Where I feel like I am overprotective of her is with her care. This will always circle back to her disability. In my last entry I spoke about the guilt I feel for that and how I'm told I could not prevent it, although right now I feel like I could have. If she is home schooled, I can protect her from violence in schools. If I buy organic and vaccinate maybe I can prevent some awful disease from attacking her. Keyword is "maybe". I know I can't truly protect her from everything, but it doesn't mean I won't try. I'll hear her cry and a siren goes off in my head to remedy it as quickly as possible so she does not feel any pain or sadness for even a minute.

Through my attempt to cope, I have completely random moments where the sound of music brings tears to my eyes, or a dish in my hand feels like it will shatter. A playful diaper change or bathtime splashing can go from laughter and smiles to a sudden bolt of lightning reminding me of her little leg not kicking as hard as the other or making as big a splash as the other. My seven-year old niece was "babysitting" her on her playmat recently and very innocently asked why her pants were so big. "Her pants keep covering her foot", she said. We all just kind of sat there not knowing what to say. It made my heart ache for a moment because I hadn't really thought of how this will affect her or how it will feel for her Mom and Dad to have to explain it to her. I am comforted in knowing Norah will be under her wing though. I think when Norah begins treatment, she will be older and will be able to understand it better and probably even bring light to the situation as children do. I can picture her teaching Norah things and protecting her. These brief moments are slightly overwhelming but then I feel okay after. I like to think that is God's way of helping me cope. Those moments to me are better than not having them. Not having them would mean I wasn't on my way to acceptance. I am learning that allowing myself to feel what I feel and think what I think in that exact moment is one more step to being a better parent to her...a stronger Mother.

I am very slowly starting to regain my faith that I won't feel like this forever. I am so incredibly thankful for the other parents that began writing their own blogs. If I didn't have this outlet, I don't know that I would being seeing the very faint light at the end of the tunnel. For me being as open as I am, I can't seem to do this through conversation so it means so much to me to have our family and friends listening to our story through my writing. For our family, thank you for your patience. I know you all wish blessings and care so much about Norah. For all of our friends, relatives near and far and neighbors, thank you for reading...for caring enough to read. Thank you for sharing Norah's story with your own friends. It brings me comfort to know that so many people will be aware by the time she begins treatment and she will have that much more support as will we. I am not one to ask for prayers, but I have this one request. Please pray for our little girl. I want to pray for growth, capability, faith in medicine and hope. I pray that her father and I can take the advice we've received and enjoy her and not live in fear for the next year. I pray that we don't waste time, kill time or let it pass. I pray for myself and that God will show mercy on me and that he will help me find myself again in all the sadness so she can learn a positive example from me. I pray for Norah to emerge a strong little girl despite her challenges. I pray so hard that her leg is the only issue we will face with her condition. I pray for the children around her to feel kindness and support for her as she grows. And I pray for all of you reading. I pray that God blesses you, your family and your children with good health.

Blessings :)

Just being truthful

People say when you have a child, you will do anything for them. This is an understatement. Any mother or father will agree that the love you have for your child cannot be expressed with words. It amazes me everyday how you can meet your child for the first time and feel that kind of love and devotion. To know that your purpose on this Earth was for that little person and that everything you have ever done, every mistake you have ever made, anything you have ever experienced and every person you have ever met led you to them. I thank God for my husband every night before I go to sleep for giving me this special gift. My family makes my heart whole even though right now my heart feels so fragile.

If I could give both my legs to my little girl, I would do it right now. I have strong legs, hips, knees and feet and I would spend my life without all of that if it meant her never having to endure any pain or fear. She begins her next stage in a month which will entail physical therapy for her knee. 3 months old....that is how old she will be when she begins knee therapy. Most children don't even bump their head by 3 months old.  Her right leg continues to grow longer and stronger while her little left leg is just struggling to keep up. I didn't expect for the length difference to become what it is now so quickly. The more she grows, it seems like the shorter her other leg appears. I hate the unknown right now. I try to enjoy the peace and the fact that we do not have to subject her to much treatment right now, but lately I just want answers. I hate not knowing if her hip will be functional, if she will need one, two, three or ten surgeries or what her difference will be in a year. I hate the uncertainty of it all.

What I don't want for this blog is for it to become a "Mommy pity party blog" or a rant on the sadness my husband and I feel. We started this so those who care about her can stay updated and learn more about her condition while simultaneously giving me a chance to express my innermost thoughts. What I've realized recently though is that I need to release it and releasing it in conversation is much more difficult than releasing it through writing. I think most can agree that writing and sharing is entirely different than conversating one on one with someone and discussing your feelings. For me, writing is therapeutic and sharing allows me to feel heard by someone...anyone. I am not sure I could say any of these things with someone sitting right in front of me unless it is my husband who I feel pretty confident feels the same way and quite frankly is probably tired of hearing me talk. This is why I believe Facebook is so popular with people. People want to be heard. Lately I've closed off, mainly because I thought if I did it would go away and also because I hate to burden him. I can tell you first hand, bottling it up does nothing for you.

You would think that it would be getting easier as each day goes.

"It'll get better"

"Time will pass"

It doesn't. It feels harder. Those are famous words....words that for me right now mean absolutely nothing. However, those of you that continue to be in my corner and be supportive I can't thank you enough. I've been encouraged to do what I am doing now. I've been told to write, talk, cry, whatever I need to do to move forward. Majority of the time I feel suffocated. Not by people or by my little girl or my husband, but suffocated by the overwhelming fear I have for her, the guilt I feel and the future. Sometimes it feels like my chest is just going to explode and out will come the anxiety and the guilt and fear.Yet I LOVE being a mother to her. We dance and sing and laugh ALL the time. She is truly the most amazing thing I have ever done in my life. Pure joy.It is so joyful that I joke with Rich all the time about trying for another baby! And just like that....the fear seeps in. I immediately wonder if I will ever have the courage to carry another child. If my body couldn't do it right the first time, how can I trust my next child will be okay? I want another so badly, but I want them healthy more than anything. Most will think it is silly, but that's what goes through my mind everytime I think about another child down the road. Will I even be able to enjoy being pregnant as I look over my shoulder at every single thing I am doing, eating or breathing in. Lord knows, I would treat my next pregnancy entirely different than the first. And to be honest, I was pretty careful this first time.

Most people can't understand what her journey entails and I would never expect them to. To some it may appear as just a shorter limb. Boy do I wish more than anything the road ahead was as simple as that statement! There is so much more to her condition that we don't even truly know about and won't even know for a while until more time passes. While I am thankful that I have a daughter (as some can't conceive), thankful she is healthy (as some children battle for their lives) and thankful that hopefully....hopefully her condition will be someday corrected, I am angry. I am so unbelievably angry that it seeps into every other aspect of my life. "Melancholy" is a word I have grown to know too well. Some days, I'll step outside with her and breathe in the fresh air and sunshine and forget about it all and other days I'll fill my schedule with distractions. These distractions may be doctor appointments, errands or playdates....whatever they are, they distract me. I cling to my faith and I pray so deeply each night that His plan is a good one. I am not angry with God. He has moved what has felt like mountains over the last two years and I have always trusted in His plan. I still do. But right now, I am mad.

I want to conclude this post with an apology. The people that follow our blog know us well, they know me well. This entry cannot even begin to truly express the ache I have in my heart right now, but this is my attempt at sharing it since I can't seem to express it unless it is accompanied by irritability or negativity.  Please know that everytime someone tries to shine light upon our situation , I know it is with well-meaning intentions even if I can't respond with gratitude. I hold my friendships so close to my heart right now. Funny facebook posts and pictures, playdates, stories about your children.....all of these things help me cope. I trust in the Lord that he will show mercy on me and that through all of this I will find the many blessings he is waiting for me to see. Thank you for your unconditional support and for your patience.

Since we've removed the brace...

We removed Norah's brace November 4th, one day early actually. After our doctor's recommendation to leave it on another week simply as a precaution, Mommy just could not wait any longer! Taking that extra second to peek at her when she sleeps now is different. She's cozy and comfortable and can nestle into her swing or her napper or whereever I decided to lay her down. I find myself at times completely forgetting about the road ahead because now without her brace, I can hold her normally and do the things we couldn't really do before. At the same time, when I am reminded of it, it hits hard. Maybe it is because without the brace she can extend her legs out more and I can really see the difference. We introduced pants and p.j.'s the night we let her sleep without it and I was upset with myself for focusing on it, but I couldn't help but cry over the fact that her pant leg came over her foot. We have worn onesies since birth so would have never even thought about the fact that her pants would always need to be hemmed by her Mimi. (Thinking Mimi will teach me to sew!) For now, it isn't a challenge because she isn't walking, but eventually I wonder if she will prefer dresses or shorts because of it. Either way, Mommy will make it work for her.

Lately I feel like God is giving me extra special care because the moment I am reminded of her condition or have a moment of pity or fear for her, it seems to happen at the same time there is a moment of hope or joy if that makes sense. We removed her brace which allows her little leg to stare us right in the face, but at that moment I was so happy to have her out of it that the joy overshadowed the sadness. He always seems to challenge me and then allow me to rejoice and be thankful. Lately I seem to be surrounded by little angels fighting for their lives or with worse conditions that don't deserve that fight. And neither does mine.

For now, I just want to enjoy her as a baby. We don't begin the next step in her journey for a couple of months, so that allows us to just let her be. I want to breathe in all of the moments that others seem to rush through and take for granted. I am not in a hurry to have her sleeping through the night or in her crib or worrying about the next milestone or why it hasn't happened. When you become a parent, those questions are asked frequently. You're supposed to get through the first 2 weeks, get them sleeping through, cry it out, self-soothe, etc. Why are we in such a hurry to have them grow up? They are babies. They need you. For us, balance is our motto. And it works for Norah because she is a really happy kid. :) I am only focused on what she is doing right now, the sound she just made, not the sound she should be making by next week. With that said, I love that I know her. I know her sounds, her faces, cries, her needs and when she needs them. I love that I know I am a really good Mom. To feel that when deep down I feel so much guilt is amazing. It comforts me. It is humbling. I don't know that I will ever feel anything other than responsible for her condition or guilty over it, so if I can atleast feel confident that I am a good mother to her, than I suppose that is enough.
I urge you, if you are a parent, to relish in the moments you have with your child. Try to find joy in the noise, in the late nights, in the messes. I feel like I just have this ticking clock in my ear reminding me of the time I have with her as a baby and that it will go quickly. That clock also reminds me that in my baby's near future those moments will be accompanied by surgeries and therapy so the moments I have with her now minus all of that are that much more precious and priceless.

2nd Ultrasound Results 10/29/2012

Today we visited Norah's Orthopedic for another Hip Ultrasound. She was a champ! I had some moments here and there where I would let my mind wander, but for the most part all three of us handled it pretty well.

Here is what we have learned today:

1.) She now has a normal hip according to the ultrasound. The brace did exactly what it was designed to do. The ultrasound showed the femoral head located in the hip socket which is normal and her hip development was better as well. Technically the normal amount of time to wear a brace is 8 weeks, so our Orlando Orthopedic suggested another week as a precaution. What we have also learned in speaking with the Paley Institute is there is a process called Ossification in which the cartilage turns into bone, which has not yet happened. Therefore, we will not truly know what the bone has done until atleast 6-9months of age. At that point, an x-ray will most likely be the most accurate way to show if her hip is indeed "normal" and strong enough to go through leg lengthening. In a nutshell, her cartilage appears normal, the bone however we do not know yet. So the necessity for hip and knee surgery prior to leg lengthening is undetermined.

2.) We discussed her other issues with Dr.Knapp as well regarding her leg. We've come to learn that typically the issues run all the way down the leg beginning at the hip. So in her case, it began with her hip, down to her femur which we know is shorter, down to the tibia which also appears shorter, onto the foot which is slightly smaller and then down to the toes which she has two fused together. I hadn't really tied them all together until today, but now it makes sense.

The leg length difference without her brace as of November

3. Her leg is not as serious a case as it could be. (As far as we know right now) Because she has a femoral head and her knee is in place, it is most likely correctable with leg lengthening. (We knew this) However, what we didn't know, is that it is minimal. In doc's words, "This would be a 6 inch put for Dr.Paley."  Some cases are very complex, Norah's at the moment is not. (Mommy is holding tight onto those statements)

4.) Dr.Paley is a pioneer according to Dr.Knapp. If there is a case that 90% of surgeons would turn away, he is the one that would say "No, I can fix this."  Our doctor feels confident that they can take on Norah's case, however encouraged us to still meet with Dr.Paley in West Palm Beach which we still plan on doing. He reassured us that either location could help Norah and was very supportive of our desire to meet with Dr. Paley.

5.) Shoe Lifts: We learned that some kids prefer them and others prefer to simply walk on their toes. It is all a matter of preference. It is not in the near future for Norah so we won't worry about it. As far as her beginning to walk, the difference will most likely be minimal and the need for shoe lifts if she prefers them will come in the first couple years. For whatever reason, shoes are a really sore subject for me. Maybe it's because little girls love shoes? Or the fact that when I was little I LOVED heels and loved walking up and down stairs to hear the sounds of my shoes clicking. Right now, socks are about all I can handle. It seems to really strike a nerve with me when I look at little shoes.

6.) Norah loves sugar water. :) When she was crying during her ultrasound, the tech (who by the way needed an attitude adjustment) she handed me sugar water to dip her pacifier in to calm her down. It was funny, because I thought, "Um, no she's fine without it, I am not giving my 7 week old baby sugar." Within seconds of hearing that scream, Norah was sucking on sugar water! Later in conversation, my husband explained the importance of having a GREAT experience when you visit the doctor. When you pay out of pocket like we do until the deductible is met, we want  A GREAT EXPERIENCE. When you pay a $50 copay like some, you don't really seem to care as much. Such an eye opener! After spending hundreds on this ultrasound, I really would have liked a technician with a bit more sensitivity and a decent bedside manner.

7.) No big surprise, but we continue to learn that she is the cutest kid I have ever seen in my life and a stinking papercut would break my heart. After walking the halls at the hospital and passing children in wheelchairs and some in casts or braces, I came to realize our life with her and that someday soon that would be us. We would eventually know the doctors and staff by name and where the nearest bathrooms were. I kept dwelling on the fact that this was not my plan for her and that I couldn't protect her from it. I didn't want to have to bring her back there. Kids aren't supposed to be in hospitals. They are supposed to have a couple broken bones from the playground and move on. I wonder what people are thinking of me. What did she do while she was pregnant? What did she eat? Is it in their family history? Silly, I know, but true. Yesterday was a breath of fresh air along with another reminder of what we face. On a more positive note though, atleast they break you in gently...an ultrasound compared to the later procedures is a cake walk. So we have time to prepare...

1st Orthopedic Visit

Norah in her "taco brace"

Pretty sure I prefer what she's in compared to the rest of these!

Taking Norah to the Orthopedic on a rainy morning within 2 weeks of birth was a ride! Both of us nervous on the way there while she slept quietly in her carseat. She has been in her "taco brace" as they call it since we left the hospital and it has been an enormous challenge with day to day things. A piece of advice to anyone breastfeeding a child with this condition....get help fast. Do not wait. I spent two weeks of her life battling with her trying to figure out how to feed her. Basic positions didn't work well, my husband had to stay home with me because it was so exhausting and emotional, I just couldnt go it alone. When anyone would ask, "Why is it so hard?", I found myself busting at the seams thinking, "Seriously?, you have to ask?" People have well-meaning intentions, I just couldn't handle anything at that point. With that said, I had to nurse her in the doctor's office that day. Fun. So this appointment began the 8 week trial of the brace. We would find out later if she had to wear it longer. The purpose of the taco brace is to keep her hips open and in better alignment while the socket and ligaments become more stable. It is supposed to encourage development of the hip joint. A superior hip is very necessary for her future leg lengthening procedures. The doctor did state that he thought her hip damage was minimal and that the prognosis looked pretty good. Some children then go to wearing it part time for another 4-6 weeks after the initial time, but we are hoping this step will be eliminated if possible.