two years and counting...

Happy Anniversary to myself! Today is the 2 year anniversary of my full spinal fusion, and also a huge milestone since it is the longest I have gone in the last 6 years without having a surgery!


I can't believe how much my body and life has changed. I have freedom and limitations, pains and relief. I am thankful for the great things having the surgery has provided to me, and am learning to accept the things that I am not able to do because of it. To think that two years ago at this time, I was still under anesthesia in an operating room is just amazing. Here I am in my living room, listening to Christmas music and enjoying the last few days of having a Christmas tree. My baby is sleeping in his room, and I am not experiencing any burning leg pain at the moment. How life has drastically changed for the better! All that horrible, scary, darkness was worth fighting through. Even if my results were half of what they seem to be now, I would do it again.

It made me laugh today that I am STILL using my handy-dandy grabber. But now I am using it to pick up pacifiers that have been strewn across the house, or random toys that fall behind the couch. It saves my back from bending, and with that heavy child to carry, I am trying to find as many ways to do that as possible! Who would have thought that little invention would prove to be so helpful, two years later. It goes to show that yes, there are permanent changes to my body from having my spine fused. BUT...there are ways to do what I love, I just have to find new ways to do them.

It was a wonderful Christmas for our family this year. My family came and we celebrated the birth of Jesus at my home, with my precious little guy roaming around eating wrapping paper and trying to keep up with his older cousin Eva. It is truly a gift I will treasure forever, this time of happiness and joy. Two Christmases ago, I had the dread of the surgery hanging over me, which made it really hard to enjoy my favorite holiday. And last Christmas was overshadowed by the loss of our failed adoption. So this year was very different in that I got to simply enjoy the day with a feeling of peace and fulfillment.

I know that many Christmases are left in my life (Lord willing!) and that they may not all be as happy as this one was, so I am thankful for one that was simple and full of joy and babies laughing.


some thoughts on Christmas, loss, and hope...

I have been getting my house ready over the last week to celebrate Christmas. This has been such a sweet and special time, since it will be our first Christmas with Jude. I got to pick out his stocking, get some cute Christmas pj's and have already bought a few baby toys to go under the tree. But as I've been doing these things with such joy in my heart, I am also reminded of how sad, hard, and disappointing our last Christmas was.

About two weeks before that Christmas, the birthmother that had chosen us to adopt her unborn baby went into labor and told us to come to the hospital. We were so excited. We were scared, as any new parents are, but also so excited to meet and hold that precious baby. We were thankful that she wanted us to be there from the moment he entered the world, and that we would get to have those memories forever.

I will never forget the moment when that all changed in the empty hallway of the hospital in Jacksonville. When the attorney that was representing us told us that she had changed her mind. That she didn't want us there anymore. That we needed to leave.

I've been through a lot of hard things. A LOT. But this was definitely harder than any surgery, any recovery. All the hopes and joys, and the dreams and plans, and all the love that we had for that tiny baby...it felt like it was all for nothing. It felt like it was a nightmare. To have been so close to having our hopes fulfilled, and then have them dashed to the floor in span of a sentence...it was devastating.

Christmas has always been my most favorite holiday. But last years felt like a funeral. I went through the motions. We did all the celebrating, the church services, the visiting with family. I tried to put on a brave face with all but my closest friends. All I really wanted to do was lay in bed and cry. And I did do that a lot. It was so hard to hear about the joy of Christmas, when I felt anything but joyful.

I don't pretend to know what it is like to have gone through a miscarriage. But I do know what it is like to have loved an unborn baby, to call it our own, to pick out a name, to buy him clothes. I know what it is like to excitedly call your family and friends to let them know the amazing news, that we would FINALLY be parents! I know what it is like to decorate a nursery, to pick out blankets and toys, to put a car-seat in the the back of the car with hopeful expectation.

I know what it is like to drive to the hospital expecting to leave with a baby.

I know what it is like to leave empty handed, and brokenhearted.

It took me a long time to process these feelings, the sadness and loss. And once I realized it truly was a loss, not just a disappointment, I was able to heal.

We were blessed to become Jude's mom and dad not too long after that first adoption failed. It was tempting to think that was what 'healed' me. It wasn't. Jude was not a replacement. That other baby is a real person, a separate baby that I loved and lost. I still think about him and his birthmother frequently, and wonder how they are doing, hope that they are okay.

What healed me was believing that God was working for our good, even through something as painful as that experience. Just as I trusted him to take care of me through 4 spinal surgeries, I trusted that He saw the entire story, not just this painful chapter, and knew how it all ended. He also knew what it would take to get us to the right end.

Christmas is about God coming to us in a very unexpected way. And I believe He is always coming to us in unexpected ways. Sometimes those ways are full of joy and happiness  Other times they are difficult and painful. But I believe He is always with us, always working for our good. That adoption failing was painful and sad. That baby was meant to be part of our lives for only a short time. We are meant to be a part of Jude's life for as long as we live. If that adoption hadn't failed, we wouldn't have Jude. And I can't imagine my life without him and his smile.

I will always have a piece of my heart that belongs to that baby I never met. And that's okay. I don't have to stop loving that baby, to love the one I hold in my arms every day.

So this Christmas, as I enjoy all the firsts with my son, I can also appreciate how God has brought us together. How God has healed me physically, emotionally, and spiritually. He was with us in that hospital in Jacksonville on that sad day, and He was with us when we held Jude for the first time. And He will be there with us through all the joys and trials we have yet to experience.

I hope you all have a blessed and joyful holiday season. I hope that if you are suffering like I was last year that you will feel a sense of peace, and a hope that God is working for your good, even if you can't see it yet. And if you are experiencing joy, I hope you are able to share it with everyone around you!

Merry Christmas
------------------
And the first time
That You opened Your eyes did You realize that You would be my Savior
And the first breath that left Your lips
Did You know that it would change this world forever

And so this Christmas I'll compare the things I felt in prior years
To what this midnight made so clear
That You have come to meet me here

To look back and think that
This baby would one day save me
In the hope that what You did
That you were born so I might live
To look back and think that
This baby would one day save me

And I, I celebrate the day
That You were born to die
So I could one day pray for You to save my life

-Relient K "I Celebrate the Day"


Thanksgiving...

Okay, so it's obvious that I'm just not going to keep up with this blog right now. I love writing, and I love letting everyone know that I'm doing well, and the status of my back post surgery. BUT...I love being a mommy so much, and I'm just enjoying it. And when I'm not fulfilling my mommy duties...I also love RESTING.

I had my 2 year follow up appointment a little early, since my actual surgery date wasn't until December 27th of 2010. But I didn't want to have to squeeze in an appointment around Christmas, so I went in a few weeks ago and saw my surgeon. I'm happy to report that everything is great! X-rays look wonderful, and they were pleased with my strength and range of motion that I've recovered.

I was told pre-op that it would take at least 2 years to see the full extent of recovery, and that is not an exaggeration. There are things I can do today that I could not do a year ago. My ability to twist (while not like someone with an unfused spine) has increased, and I am able to bend much closer to the floor. I must add though, I do NOT do those things on a frequent basis. I am doing my best to keep my lowest unfused L5-S1 vertebrae healthy and strong, and the less stress I put on them the better. BUT, I don't feel stiff, and the further out I get from surgery the more normal I feel.

No, I will never feel exactly the same as I did before I had the surgery. But, I do not feel like I am robotic or paralyzed.  Yes, I have limitations, and even some handicaps. But they are minor compared to the pain I was living with before.

Honestly, there are only 2 times I really notice my fusion. The first is when I have to back up the car. It is very hard to not be able to twist and look backwards over your shoulder. I am thankful for my handicap parking permit, that allows me to park in the larger spots with greater visibility. I also am thankful for my car that has a back-up camera so I can see what is directly behind me when backing up. I don't know if I'll ever get used to the new way I have to do it (which is basically VERY slowly inching backwards while trying to see as far behind me without twisting as possible). If I can't find a handicap spot, I try to find a spot where I can pull all the way through, so I don't have to back up at all.

The other time I notice it, is when I am carrying the baby, and he either drops or throws something on the floor. I have to admit it gets very frustrating. I can't bend with the 20 lb baby in my arms to get the paci or toy. So I have to set him down, grab the item, and then pick him back up (which again, puts more wear and tear on my back). It doesn't sound that dramatic, but anyone with a little one knows this kind of activity happens quite regularly throughout the day. So I am working on just letting the house be messy, and leaving toys and pacis scattered throughout the house until the end of the day when I do ONE clean up. Other wise I am bending down too frequently and can end up with a very sore, very tired back. I haven't noticed an increase in pain, but I do notice the heavier he gets, the more selective I have to be about picking him up. I try to play with him on the floor more, and avoid carrying him for long periods of time. I have occasionally picked him up the wrong way and felt sharp, shooting pains in my lower back, and that is scary. Those times have taught me to LIFT WITH MY LEGS. If I have even the slightest arch or unbalanced back when I pick him up I can seriously hurt myself.

So while there are definitely challenges to living life post-op, the overall trade off for me has been positive. I could not have taken care of my precious baby before. I was in so much pain. Yes, it can be hard taking care of him with the limitations I have. But I am learning and adapting as he grows. Before I know it, he'll be walking and running and this time of carrying him constantly will be over. (And then we'll be on to the NEXT challenge!)

I'm so thankful this year for being healthy, strong, and that my recovery has gone so well. I told my surgeon when I saw him that he changed my life forever. I am thankful for that. I feel free. I feel excited to see how God is going to continue to mold me, and strengthen me through the challenges of raising children with my limitations.

I'll end this "status update" with this...as Thanksgiving is happening this week I'll tell you what I'm most thankful for this year...my loving husband and our beautiful son! We would not be the family that we are without adoption, and I am so thankful that Jude's birthmother chose to not only give him life but to make sure he was taken care of, by placing him in the safety of a local hospital immediately after he was born. Without the Safe Haven law that allowed her to place him there, (no questions asked and without fear of prosecution,) I don't know that I would be blessed to be Jude's mother today. To learn more about the amazing Safe Haven laws, please visit The National Safe Haven Alliance. The more people who know of this law, and share it with others, the more precious lives we can save!

Did you know November is National Adoption Month? I think that's pretty fitting, since I'm so thankful for it!

Jude at 6 weeks old














If you have ever thought about bringing a child into your heart and home that was not biologically yours, there are many resources out there to help you learn more about how to make that happen. Please visit The Radiance Foundation for a great list of adoption resources.
And I would LOVE to answer any questions, so just shoot me an email if you'd like to!

If you are not called to adopt in that specific way, there are many, many children that could benefit from your love, prayers and support. Please visit Children of the Nations to learn how you can do that!

Happy Thanksgiving!


a new kind of physical therapy...

It's been a while my friends! After almost 5 months of basking in the glow of motherhood, my writing itch has finally returned. However, it has taken some detective work to remember which email and password I used to log in to my blog. During the last few months, I have really wanted to update everyone on how well my post-op back has adjusted to being a mom, but every time I actually had a spare moment, I'd hit the roadblock of not being able to remember what email I used for this account, and that was enough to deter my tired mind from going any further (please view video below for a semi-accurate portrayal of my experience this morning trying to log back into this account

...until today. I received a wonderful, sweet encouraging email about how helpful my blog has been, and I remembered that was huge part of why I started this thing to begin with...and it gave me the push I needed to solve the mystery that was my password and login email, and VOILA...I am able to type again to my heart's content...or as long as my baby takes a good nap.


I can't say enough how happy I am I had the surgery before becoming a mother. I definitely needed that reinforcement, especially considering the fact that my 6 month old baby is a happy and healthy 18 pounds already. I have had a few days when my back has been sore, or the residual nerve pain in my leg has been irritated from carrying him too long in the car seat, or from lifting him with my back instead of my legs. But overall, I have less pain in my back and legs now than I ever did pre-op, and that is with lifting and carrying an 18 pound baby day in and day out. 


A quick overview of the things I have learned/experienced over the last few months pertaining to my back.
Enjoying the Short-lived Baby Carrier
First of all, I wasn't able to use the baby carrier with Jude for more than a month, which was disappointing. He loved that thing, and I loved to have my hands free and take him on walks. He is a very snugly, attached baby (some might say clingy, but I prefer "bonded"). But he got so heavy, so fast, I started to have bad pain in my leg after I used it, so I realized that option just wasn't going to work for me, as much as we both enjoyed it.

I also found carrying Jude in his car seat was basically like shooting myself in the leg. His weight plus the weight of the car seat was just too much for me, even in the beginning. I found it was better for me to always push him in the stroller into whatever house or building we were going to, rather than carry the car seat.

Crib with hinge option (in down position)
Another challenge I came across has been dealing with my crib and pack n play. Although I had purchased (and absolutely love) my crib specifically because it has a hinge that allows me to reach the baby without having to bend as much as a regular crib does, as Jude gained weight, I was having a harder and harder time laying him down. My husband solved this dilemma for me though, by simply thinking of adding an extra mattress to the crib. Now I can reach him very easily, with minimal bending. As soon as he is able to stand, or pull himself up, this will no longer be necessary.

Graco Pack N Play with Bassinet, Go Green - 1 ea
Pack N Play with mattress in upper position
I realized the pack n play was going to be in issue right before we left to go on a week long beach trip about a month ago. I had borrowed one from a friend and hadn't thought too much about it until I realized I wouldn't be able to put him in it, or pick him out of it! Thankfully, since we hadn't bought one, no money was wasted. I did a quick google search and found that newer pack n play versions existed, with the option to have the mattress attach at a higher level, much like a bassinet. I asked around until one of my other friends kindly offered her newer one for us to borrow, and like that, the problem was solved!

Beyond these minimal issues, I haven't really run into large problems caused by having a fused spine. Yes, I do things differently on a daily basis than probably most Moms. But I knew that I would face those challenges before we began the adoption process, and was prepared to be creative. I am sure I will have to figure out other ways to work around my fusion as Jude continues to grow and become more active. I was a bit worried that carrying a baby around, and picking him up or laying him down would be a lot more painful and difficult than it has turned out to be. Thankfully, my back and muscles have only gotten stronger and healthier as he does the same! 


I promise to keep in touch more frequently, as I have many other things to share about the exciting last few months. But to all of you pre-op women who are wondering if you can take care of a baby after having a fusion done as long as mine, I can tell you with a huge smile...YES. It is not only possible, but enjoyable...and the best form of physical therapy in the world.

hey Jude...

I have a few minutes while my precious baby is sleeping on my chest so I am going to use them to share his amazing story of how he came to be ours.

Jude was born on January 20th at 6.8 lbs and 19 1/4 inches long. He was a "Safe Haven" baby, which means his birth parents or parent dropped him off at a hospital or fire station anonymously. We will never know the name of the amazing woman who gave him life, and loved him so much to make sure he was safe. I am so thankful for the Safe Haven laws that allow someone to drop off a newborn no questions asked, as the alternative is often heartbreaking.

We did not know he was born until February 9th at 4:45 p.m. when my adoption coordinator called me and told me to come into the office the next day at 1 p.m. with a car seat. Jude had been cared for and loved by a foster family for the first three weeks of his little life. In Safe Haven adoptions, the birth parent has the ability to come back and claim their child for around 30 days. Our adoption agency waited until most of that "at risk placement" time was up before letting us know we had been matched with him. Although I am sad we missed out on the first 3 weeks of his life, I am sure that it was the best for us since we had been so heartbroken when we had our failed adoption less than 2 months ago. We were willing to take him though, knowing he had a few weeks left in the "at risk placement" time period, because we felt we just needed to trust God and hope that He would protect Jude and our hearts. An "at risk placement" means you are willing to take in and care for a child that may be going back to their birth parents for a certain number of days. In most adoptions in Florida, that time period is only 24 to 48 hours. So, Safe Haven babies have a longer wait, but he was well worth the worry that we might have to let him go. Because he is a Safe Haven baby, we don't have any information about either of his birth parents, medical health history, or even his ethnic background. We always said we just wanted a baby, and we didn't care about the details....well, we got what we asked for!

It does make me sad that I will not be able to tell him the name of the loving woman who took care of him so well for 9 months, and left him safely at a hospital or fire station. But I will raise him with the knowledge that she is special, and we love her for giving us the most amazing gift anyone could ever give. She gave Jude life, and she gave us our son.

The at risk placement is over, so we are now finally able to relax and not worry about having to give him back! He is 100% healthy and happy, eating and sleeping like a champ! He has tons of curly thick hair, and soft chubby cheeks that I can't stop kissing. I can't believe we are finally parents after everything we have gone through as a couple. We are enjoying every minute we have with him, and cherishing each and every day.

I'm happy to say my back is doing really well even though Jude is already over 10 lbs! My leg does get sore at the end of the day sometimes, but not really much worse than when I worked 8 hours sitting at the desk. My back doesn't seem to have any worse pain at all. I feel really strong, and having the extra support of my fusion seems to make a big difference in my ability to hold him and lift him all day long. I am careful not to bend or twist, to keep my lowest un-fused disc healthy for as long as possible. I am already finding creative ways to do this! I am SO glad I had the surgery before I had a baby. I would have been in so much pain. There is no way I could have kept up with the physical demands of motherhood before I had my back straightened and reinforced. The sitting alone would have made me miserable, not to mention the carrying around, rocking, and picking up and laying down. God really has blessed me, and I am so thankful that after all that pain, I am getting to experience such joy.

During one of the first sleepless nights I had when Jude came home, I realized something really amazing. Since Jude was born in January, he had to have been conceived in May of last year. Last May is when Drew and I re-started the paper work to become parents through adoption. So the entire time we were going through getting home study approved, moving into our new home, picking out baby furniture, going through a heartbreaking failed adoption, and praying every night for our future baby....he was growing strong and healthy inside the womb of his birth mother. It took 9 months altogether, from the time we started the paper work, to the time he was born. It felt so long during the process, but now I see it took as long as it was supposed to, 9 months!

We named him Jude for two reasons. One, I am a huge Beatles fan, and their song "Hey Jude" has been one of my favorites since I was a child. But the second reason is that Jude is a Hebrew name that means "thanks and praise." We are so thankful to have him, as we know he is a a direct gift from God. And we give all the praise to God, since we believe that
"Every good and perfect gift is from above, coming down from from the Father of heavenly lights" (James 1:7)

---To learn more about the Safe Haven laws, please visit the National Safe Haven Alliance website by clicking HERE. ---

Happy Valentine's Day...

Well...a miracle has happened in our lives. We are now parents to a happy, healthy baby boy. I am thrilled to say I am exhausted from being up all night, changing diapers, and feeding a hungry baby. I will share all the exciting details when I get another minute free...but for now I am busy holding him as much as possible. I have waited too long for him to spend my time doing anything else.

Thank you for all your prayers as we went through our failed adoption two months ago. Thank you for the prayers that have brought this little one into our lives. We are so blessed!

be prepared...

For those of you who read my blog because you are considering the surgery, have a surgery date, or are simply curious about scoliosis surgery in general, here are some things that I wish I had been told before having the surgery. None of them are a big deal, but I really think that the better someone is prepared for any potential effects of the surgery (whether temporary or permanent) the easier it is to handle them.

Your surgeon is a busy guy (or gal). He does his best, I'm sure, to give you all the must need to know information in regards to the surgery. He warns you about the risks of death, infection, paralysis, and the fact that you will be in a lot of pain, for a long time. However, since he has never actually HAD the surgery, there is a lot of information that he doesn't probably see as important, or may not even be aware of since he's never had to deal with it first hand. There are a lot of things I think you should speak with your scoliosis surgeon about before you decide to have the surgery. Click here to view and print a list that I have made (with the help of input from many other scoliosis surgery alums) that has questions to ask your surgeon, before you decide to have the surgery, or when you have decided to do it, but are not sure what to ask.

Here are a few things, that may or may not happen to you. Again, these are NOT a big deal, and most of them are temporary. But I would have liked to have known about them because in those first few weeks and months of recovery, you are a little bit paranoid. Yes, it may be mostly due to the fact that you are a functioning drug addict. But, it is scary having your back split open and your spine drilled into. It's easy to let any little thing that is different or seemingly out of place, send your brain into a spiral of terror and doom. So let me ease your mind, at least a little, about some things that may happen immediately following your surgery, and throughout your first year of recovery...

1. If you are fused from T4 to L4, you will most likely need help when you go to the bathroom. It's embarrassing to say the least when I think about it now, but it is a fact that you have just had your spine fused and muscles cut through and so "reaching" is not one of your strong suits immediately following the surgery. Thankfully, there are "tongs" you can buy that help. If you are staying in the hospital by yourself, the nursing staff is trained to help you with this. I am embarrassed now when I think about it, but at the time you don't care at all...you are three sheets to the wind on narcs and pain, and this will NOT be something that concerns you. However, once you get home, it is helpful to have the ability to do this on your own, so buying the tongs before the surgery may be something you want to do. You may not need them (some people don't) but it'd be better to have them and not need them, than the reverse. Most likely, you won't need for them very long.

2. You may feel like someone punches you in the lungs every time you sit up for the first 2 weeks of recovery. No joke. Every time I sat up, I would experience an intense feeling of pressure in my chest, painful and swift as though some bully ran up to me and sucker punched me. I would not be able to breathe for a split second, and then would cough a few times, and then that feeling would go away. My surgeon explained (after I called asking about it because I was pretty sure I was dying) that can happen immediately following the surgery because they MOVED my lungs around during the surgery. It so happens that lungs don't really appreciate being "gently nudged" (as my surgeon described it). Thankfully, this sensation did not last very long, and by my third or fourth week post-op, it was gone.

3. You may have crooked shoulders in the first few months of recovery. "What??? I thought the whole point of this stupid surgery was to straighten me out!!" That's what I thought when I looked at myself in the mirror when I got home from the hospital. It was really pretty bizarre. Pre-op my right shoulder was rolled forward and was higher up than my left shoulder. This was one of the reasons I wanted the surgery, since that shoulder deformity was becoming more pronounced the worse my curves became. Right after the surgery, I could clearly see that my left shoulder was now higher than my right shoulder! I started to have a panic attack, thinking that I was now going to have to live with crooked shoulders for the rest of my life, even after going through such a hard surgery. But then I remembered something (and this is where having people who can tell you what it's like is invaluable) one of my friends who had the surgery a year before me had said: one of her shoulders following the surgery was much higher than the other one, and it happened to be the opposite of the way her's had been pre-op. She said that it had taken a little while, but after a month or two post-op, her shoulder had gone down, and they were no longer crooked. So I knew it was probably not permanent. Whew...crisis averted! I asked my surgeon about it at my next visit and he said it was because when they rotated my spine, all the muscles moved too. The ones that were pulled so tight pre-op in one direction, were now looser, and vice versa. Thankfully, my left shoulder did come down as my muscles continued to heal and relax the further into my recovery I got. So, if this happens to you...don't panic...it's most likely not permanent. Just give your body (and your mind) time to heal and adjust to your new shape!

4. At some point in your recovery, you may sound like rice krispies. I almost wrote a whole blog entry on it, but I felt it fit better on this list. At about 8 or 9 months post-op, I suddenly started to experience daily, extremely loud popping, cracking and crunching noises. It never hurt, and I never felt anything actually move in my spine, but it was loud enough for my husband to hear from across the room. It is something like the noise your knuckles make when you pop them, only loud enough that it could be that you threw a fire cracker into your back and lit the fuse. I asked around about it, and it is a pretty common thing for scoliosis surgery patients. You may have it happen every now and then, or you may have it happen a lot for a few weeks (like I did). Either way, it is not usually anything to be worried about. Here is a great article that explains it better than I can, and it gave me great peace of mind. I asked my surgeon about it too, (even though it had already stopped by the time of my next appointment) and he confirmed what that article says that “Other causes of joint noise is the snapping of tendons or scar tissue over a prominence, or something referred to as cavitation. Cavitation frequently occurs in synovial joints when a small vacuum forms in the synovial fluid and a rapid release produces a sharp popping or cracking sound.” I still occasionally pop or crack. But, unless there is pain associated with it, it isn't something to be concerned about.

5. You may break out like you're back in high school. I had so much acne I thought I was 13 again. It was worst on my forehead, chin and chest, but I got it on my shoulders and back as well. I think the places it was worst were from the surgery, where my face pressed against the operating table for 7 hours. But overall, it is from the raging crazy hormones that happen when your body undergoes a trauma of that magnitude. Your body is working overtime to heal, and it may affect your skin. Mine cleared up around 4 months post op.

6. You may struggle with depression, mood swings, and anxiety for the first few months post op. I did. It is not fun. I think there are several big reasons this happens.

  • You are on drugs. They all can cause depression. 
  • You are in the most pain you have probably ever been in in your life. That is depressing and scary, because you start to feel like you will never get better, and the pain will never decrease.
  • You are not sleeping well, if at all. I didn't sleep for more than four hours at a time for the first month post-op. I just couldn't sleep because of the amount of pain I was in. I could sleep for as long as the shortest amount of time a drug was supposed to last...if it was supposed to last between 4 and 6 hours, I would only be able to sleep 4. Sleep is vital to recovery, and vital to healthy emotions. 
  • You are stuck in the house, or hospital, or bed. I didn't start driving until 3 months post op, because that's how long it took me to get off the drugs. It is very isolating to not be able to participate in the fun things going on around you, or even drive to the grocery store.
Thankfully, as you ween off the drugs (or quit cold turkey as some of my forum friends did), as you heal and sleep more, the depression and anxiety will decrease. I felt like a whole new person when I stopped taking the heavy painkillers. I didn't realize how depressed I was until I was drug-free (the frequent crying in the shower should have been a tip off, but you just don't realize it's not normal when you're in that much pain, and getting so little sleep!) My advice is to let yourself feel bad. To cry when you feel like crying. Be honest with those around you, supporting you. Let them know you need extra attention, or that you don't want anyone around. Let them know you are scared, hurting, upset, lonely, confused and not sure you did the right thing. All of those things are okay! Just try to remember that what you're feeling is temporary, even though it feels like it will be like that for the rest of your life. Keep reminding yourself that IT WILL GET BETTER.

“I found cheerfulness to be like life itself- not to be created by any argument. Afterwards I learned that the best way to manage some kinds of pain filled thoughts is to dare them to do their worst; to let them lie and gnaw at your heart till they are tired and you find you still have a residue of life they cannot kill.” 
–George MacDonald, Phantastes

For more tips about the nitty gritty of what happens post-op as well as other ways to be prepared, click here And for some helpful info just for the ladies, click here!

If I remember other things, I will be sure to add them to this list...for now, just remember, that being prepared for this surgery is very helpful, but it does not ensure a complication free, painless, or easy recovery. It helps, but it does not make it easy...just easier to bear.

GERD news for people who love bad news...

Okay...so, if you've been reading my blog for a while, you will have read at least one post where I have chronicled my battle with worsened asthma symptoms since my surgery. (Take a Deep BreathPillow TalkTake a Deep Breath Part 2) Well, after months of asthma treatments and much frustration, and increasingly worse symptoms, my Asthma doctor finally figured out the main root cause of my problems. And I did NOT see it coming...

Yes, it is related to my surgery, (a combination of all 4 of my surgeries actually). No, it is not scary or life threatening, or thankfully, permanent! We had tried every kind of steroid, allergy test, and lifestyle change, and my symptoms were continually getting more and more out of control. It had gotten to the point where I was choking because my lungs were filling up with a mucus plugs, every day. My Asthma doctor decided to think outside the box. He asked me what I thought was a strange question: "Do you get heartburn?" I do not, and was wondering why he asked me that, and he went on to say that even if you don't get heart burn, you can still have something called Gastroesophageal Reflux Disease, or GERD.

There are many causes for GERD, such as eating really greasy foods, being very overweight, or even pregnancy. But since I don't have any of the common risk factors, not even occasional heartburn, it never occurred to me that I could have it. However, since GERD is basically acid coming up out of your stomach into your esophagus, and in my case, all the way up to my throat and aspirating into my lungs, my asthma slowly began to get out of control. When the acid aspirated into my lungs, it caused my preexisting asthma to become very, very bad.

My doctor figured out this is what happened:
LES: Lower Esophageal Sphincter
Every time I've had a surgery, I have spent a prolonged amount of time on my back, laying down for large parts of the day, sometimes for months at a time. This last surgery's recovery was so intense I would eat laying down, flat in my bed for around 2 months. This meant my LES (basically the "door" to your stomach) was relaxed while I was laying down, allowing the acid in my stomach to come right back up into my esophagus, irritating the lining. As I progressed in my recovery, I didn't lay down to eat anymore, but I did continue to lay down right after I ate meals, and did my physical therapy on a full stomach, which again, encouraged the acid to irritate my esophagus. Apparently, people with preexisting asthma tend to react to acid reflux with much worse asthma symptoms than anything else. And that was exactly what happened to me. I pretty much laid down flat as I possibly could for as much of the day and night as I could, for around 3 months. And that is when my Asthma symptoms suddenly started to pop up.

And guess what else can lead to GERD? Slowed down bowels...Oh yeah...remember when I had that due to the MASSIVE amount of pain killers I was on for months? And what else causes GERD? Steroid medications, like the ones I was taking for my terrible asthma symptoms...Really? The very thing we were trying to do to help my asthma was actually making it much, much worse? But of course!

So my Asthma doctor prescribed Prilosec (Omperazole) a medication that helps reduce the amount of acid produced by the stomach, which therefore lowers the amount that can creep back up into the esophagus and throat causing damage. He just wanted me to try it for a bit to see if it would help at all. I was honestly a bit skeptical that it would help, but decided to go ahead and try. After one week, my asthma symptoms were drastically reduced, and by three weeks they were gone. I've never had such a clear resolution of symptoms in my life!

With such night and day results, I decided to go see a Gastroenterologist to have an esophagogastroduodenoscopy, to confirm the diagnosis. Esophagogastroduodenoscopy is a fancy word for having a tube shoved down your throat to take a look at your esophageal lining (to check for damage), stomach, and the first part of your small intestine. They have a tiny camera that looks at everything, so they can check for any growths, ulcers, or inflammation. They did a biopsy to check for cancer, and made sure there was no hernia. I was sedated for the procedure, so I can't remember a thing, and it was painless.

Thankfully, I had no real damage and none of the more serious issues, though I did have irritation of my lower esophagus, which explained my symptoms. They believe my GERD resulted purely because of my lifestyle which resulted from my multiple surgeries, most specifically this last one.

So it's all tied together in one crazy, asthma and scoliosis bow. I am now steroid medication free, and my asthma symptoms are completely gone. I have to take the slow-release Prilosec once a day, and have a restricted diet for the next 3 to 6 months. The diet part is probably the hardest part, as I am only allowed to have small amounts of some of my favorite foods: chocolate, tomato, citrus, alcohol, and coffee, and none of them together. For example, I can have a small piece of chocolate cake, but not if I'm going to have tomato sauce on my pasta or a glass of wine. Though those are probably healthy eating habits to live by, I do miss eating a big ol' organic brownie! Thankfully, I will not have to be on the restricted diet very long, as my damage was so minimal. The Priolsec is helping heal the irritation, and by not laying down for 3-4 hours after eating (which can be hard at the end of the day when my back and leg are the most sore), I am no longer allowing the acid to come back up and keep the vicious cycle going.

It's amazing how many things can get complicated when you go through such a huge surgery. But, as I've said before, if this is my one complication, it's not that bad compared to the others that commonly happen with scoliosis surgery. I am VERY happy that it's not permanent, and that it's completely treatable. And now, I can finally breathe easy...

One Year Post-Op Visit...

I had my one year post operative visit this morning with my surgeon. It is surreal to think that at this time last year, I couldn't even drive a car, and this year I just hopped in my little SUV and drove downtown for a check up. It is a very big milestone for me, to have this last visit, and I am excited to say it was not only a big milestone, but an encouraging one.

My x-rays are showing every sign that the fusion of my bones is coming along as it should be. X-rays alone can't show whether I have full fusion, but they can show whether the areas where there should be fusion are getting darker (ie. the bone is getting more dense) and whether my hardware is all in the same place it was when they first installed it. They can also tell if there is flaking or shifting, and thankfully I don't have any of that. They said my hardware is all in the exact same spot it was when they drilled it in a year ago, and I have dark areas where there should be fusion. I won't have full fusion for another 6 months to a year, but the groundwork is looking really good. I could have a CAT scan sometime this year to make sure everything is as it should be, but they see no reason now to check, since all signs are good.

I am so incredibly thankful that I have done so well on "the other side" of the surgery. I don't take for granted the fact that many people are still struggling at this point, and have a much longer and painful recovery. Every day that I get to go somewhere and do something I couldn't do before the surgery, I am reminded how much I have gained.

We went with some dear friends to Disney a few weekends ago, and walked non-stop. The last time I had been to Disney was over 4 years ago, and I was confined to a wheelchair because the walking was too painful. I was only 25. Now, to go back with the same friends and be able to visit multiple parks, and walk and stand for hours on end, it was quite the contrast. I see everything through these eyes, through this change. I am so appreciative and excited to get to experience life this way.

I don't think you can really know the joy of simply being able to walk until you have not been able to. I didn't know how valuable being able to put one leg in front of the other without pain was until I couldn't do it. Being able to walk is freedom, being able to appreciate it, is joy.

For the first time in over 4 years, I have no more scheduled post-op visits. I will go back once a year from now on for a check-up. It is nothing short of amazing to me. A year ago, I couldn't imagine the life I'd be living now. I was in so much pain, and every day felt so long and tedious, it didn't seem possible that I would ever have the ability to do what I do every day now.

It does get better. I'm still getting better. By the end of this year, I should be fully recovered, and have more energy and strength than I do now. And just like I couldn't imagine what I'd feel like now a year ago, I can't imagine what "better" will be like then!


"Dry bones, hear the word of the LORD! This is what the Sovereign LORD says to these bones: I will make breath enter you, and you will come to life. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the LORD." Ezekiel 37:4-6

disrupted...

In the adoption world, when an adoption fails, it is called a "disrupted adoption." I'm am sad to say that my husband and I are among those who have experienced this painful event. It has taken me a while to process this and let myself grieve over the loss of that hope. But now that I have had some time to do that, I felt sharing our experience may be helpful to others who hope to adopt someday, or have experienced the same thing we just did.

I won't go into all the details, but I do want to share a little about what happened. We were matched with a young woman who felt she needed to make an adoption plan for her unborn baby. We were thrilled that we could step in and provide a home for that child, and as the baby was due right before Christmas, we thought we were going to have a child very soon.

I rushed about getting the rest of our nursery put together, buying diapers, formula and all the other supplies one needs for a newborn. We knew that there is always a chance that a birth mother may change her mind, at any point along the way. So even while we were getting ready to welcome a baby, we had to keep our feet on the ground. It is such a hard thing to do....because you have to be excited about this potential child that could be coming home with you in a matter of weeks. But you also can't get your hopes up...

It's pretty impossible to do that. And when we were at the hospital, waiting to get to meet the baby who we thought would be ours, we were told she had changed her mind and we needed to go home. I realized then, that as much as I had known there was a chance that could happen, and that I needed to not get my hopes up...I had done a terrible job keeping my feet on the ground. I was crushed. We were crushed.

We were not sad that the baby would stay with its mother, we were just sad that we would leave the hospital, without a child of our own.

To make matters worse, we have lost money because we paid a lawyer named Mark Miller, to handle the case. He came highly recommended to us from several sources, so we are extremely disappointed with the way we feel he mistreated us after the adoption failed. We have filed a complaint with the Florida Bar because of what we believe are unethical charges. (If you are looking to adopt in the state of Florida, and would like more information, please contact me at mytroubledbones@yahoo.com to discuss our experience.) We are now about $5,000 short of the money we need to adopt.

Our costs at this point have already reached $10,000 and we are not even signed with a private adoption agency. Between the home study costs, and this disrupted adoption, we have spent a lot of money. And we will have to spend much more to adopt a child in the future...in all I am sure we will get close to $40,000 by the time we bring a baby home. That actually isn't too bad, in the world of adoption, but it is a lot to us, and we don't have a penny extra, or to lose.

After going through all that, we are now back in the waiting game (with a lot less money to move forward). It has been a wonderful few months, realizing how far I've come compared to last year at this time. But it has also been incredibly difficult, to let go of that excitement and hope, and realize we have to once again be patient. I know that we will become parents someday, and it will most likely be through adoption. I know that this happening to us does not mean we are doomed to be childless. You have to put yourself at risk if you're going to ever gain a reward of that magnitude. There are no guarantees in life, and I don't expect anything to be easy for me.

“To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket – safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable.”
C.S. Lewis

Please keep us in your prayers as we continue on this adoption journey. It is a sometimes scary, sometimes wonderful road, but I can't wait to meet who waits at the end of it.

To view our online adoption profile, click this link: http://isaiah435.blogspot.com/