Note from PFFDvsg Webmaster: 9/10/98 Melissa's son Adam is currently having his leg lengthened by Dr. Paley at the Maryland Center for Limb Lengthening and Reconstruction. This story is a collection of e-mail updates that Melissa has sent describing the progress along the way.
To read Adam's story from the beginning, read The Best Right Answer
Hello Everyone!
Well, after 3 major reconstruction operations and a lifetime of waiting, Adam finally had his first lengthening surgery this past Tuesday, May 12. I must admit something to you: For all my brave talk, and big words about "The Best Right Answer", I still wasn't sure. I had heard horror stories along the way, and I wasn't sure I could put Adam through it all. We were in to the final countdown when I went to Dr. Paley and told him of my fears and about the stories I had heard. Boy, am I glad I did! He did much to reassure me. The biggest problems have come from families who don't get the surgery done here....no one has the expertise Dr. Paley does. Also, some families opt to have the therapy done elsewhere, and have experienced awful things. That doesn't happen with the therapy team working with Dr. Paley, though. None of it is easy, but it's not a nightmare when it's all done right. I know. We went through with the surgery, and are tremendously happy we did.
The surgery was 8 hours long and quite successful. It involved not only the application of the Ilizarov device, but also more reconstruction. As usual, Adam came through with flying colors. He's a trooper!
Pin care....what an evil thing to put a child through! But this time neither Adam nor I were scared of it, and both of us have noticed that his level of pain is MUCH lower this time. I think the lack of fear is making a huge difference. Sure, there is still pain. But it's much more tolerable than when he had the device last year during reconstruction.
Therapy....well, let me tell you, this kid can hardly wait to go each day! Sure he works hard, but he knows it's helping him, and since he has no fear, the pain is almost non-existent. It makes a difference when your muscles aren't all tensed up from fear.
Complications....yes, there are some. He has a huge blister on the back of his leg, and no one is sure why it's there. Also, he has a large painful sore on his head from poor placement on the operating table. But our biggest complication has involved the insurance company. Less than 48 hours after surgery the hospital informed us that we had to leave, in spite of the fact that Dr. Paley was advising that it would be best for Adam to stay. I think it really stinks that some pencil-pusher in an insurance office who doesn't have a clue can override what the doctor says is best for the patient. The problem was made worse by the hospital not calling the right person at the insurance company to discuss our case. Shame on them. They should be better advocates for the patients. So....I was not going to have Adam's health compromised. Period. I refused to leave. I also got on the phone right away and called the Governor of Maryland, our U.S. Senator, WJZ Television, and the Baltimore Sun, and asked them all to help my son. They did, and by Friday afternoon we had the approval to stay until Dr. Paley released us and we had an apology from the hospital. Furthermore, I had just about every government agency in the state phone and offer to stand up for us if we ever have trouble again. And the television station is doing an in-depth investigation into why insurance companies have the right to do this to our children. Let me tell you, friends, don't ever be afraid to FIGHT for your child. Be bold and be unmovable when it comes to what's best for your child.
Adam was dismissed from the hospital Saturday afternoon, and by Sunday evening he was feeling so good that he wanted to go to the evening services at church. Needless to say, his strength and grace were an inspiration to everyone there. Also Sunday we started turning the bolts on the Ilizarov device for the first time, so the lengthening officially began then. Monday he started physical therapy. So we are making progress and are very happy!
So far, so good. I know we still have a long way to go, and there's a ton of stuff that could go wrong along the way. But we have a tremendous amount of optimism. No matter what happens, we know we're in the best hands available. And even if this whole thing fails, at least we will rest easy knowing that we tried. At least we're going to give it our very best shot.
With your permission, we will continue to send updates as the procedure progresses for us. It is our hope that our experience with the Maryland Center for Limb Lengthening and Reconstruction and with Dr. Paley will give you a view of the possibilities, the truth about complications, and help in your own journey for your Best Right Answer. Please don't hesitate to contact us if you have questions or comments, and we always appreciate the words of encouragement that are sent to Adam. We happily answer all who are kind enough to write.
Peace to all of you,
Melissa, Adam, and Daniel Arnold
Hi all! Well, I told you that we would keep you posted on Adam's progress as we made our way through our first lengthening with Dr. Paley. So here I am to let you know the latest news. Again, please forgive me for having to make this a "form letter" sent to all of you on our list, rather than a personal one to each of you. Time is such a rare commodity these days, that I simply must do it this way in order to let you all know. But you must never doubt that each of you is in our hearts and we are truly grateful for your continued caring.
As I write this, it is June 29. We had surgery on May 12 and began the lengthening a week later, so we're about a month and a half down the road.
All has been going remarkably well. As of last Thursday, June 25, we had gained four centimeters from the lengthening in addition to the half inch we got from the reconstruction that was done at the same time the Ilizarov was installed. So we feel very happy with Adam's progress.
Therapy has been painful, but not nearly as much as any of us thought it would be. And he really enjoys the interaction with the other kids. They are all going through the same thing, so they can really sympathize with each other, and no one feels like an oddball just because they have a lot of metal hanging out of their body. The therapy must be really successful, too, because Adam hasn't lost any range of motion in his knee or his hip.
However.....we spent today at the hospital unexpectedly because of a complication. You know, none of this happens without some risk. We went into this fully aware of those risks. So today was a disappointment, but not a total out-of-the-blue shock.
Actually, we have had two complications in the last few days. Last week I saw what I thought was the beginning of a pin infection. But one of the nurses at the place where he gets his therapy had told me once before that the kind of drainage I was seeing was not the sign of an infection. So when I saw that on Tuesday, I didn't start him on antibiotics. I waited. And I was wrong. By the time we went for our regular appointment with Dr. Paley on Thursday, the infection was far enough along that Adam was really hurting. I felt terrible, of course. I still do. Dr. Paley said that in the future, I should just trust my own gut about what I think is happening because it's better to have him on antibiotics and be wrong than to wait and be wrong. So....
The second complication is what took us to the hospital today. This weekend Adam was in terrible pain. It was his ankle that was hurting, though. How odd. The infected pin was hurting some, and of course the therapy that we do at home on the weekends hurt some too. But it was his ankle that was causing him the most pain. And it was the kind of pain that medicine just wasn't taking care of. So I phoned the doctor today, and in we went. There was a lot of discussion about what it might be. They thought it might be referred pain from his knee. But Dr. Paley had Adam's nerves tested in case that was it. We had just had the test done on Thursday....they do it routinely here...and it was fine then. But today the test showed a nerve problem. My heart sank when I saw the results. I know that nerve trouble is a major thing. And it has the potential to be VERY major. But Dr. Paley said that it was very good that we caught it so soon.
Right away the first thing that is being done to alleviate this problem is to slow the lengthening down. The rate is being cut in half temporarily. There is a risk in this, though. By slowing the rate down so much, we are risking what they call "premature consolidation", where the new bone starts hardening. That then would require surgery to re-break the bone before lengthening could begin again. But, by slowing the rate down, hopefully this will give the nerve a chance to rest and catch up to the rest of the leg. Also, his knee-lock is being released so the leg can bend more and ease up on the stretching of the nerve. The problem with this is that Adam has a very weak knee that dislocates easily. By releasing the knee-lock, we are risking knee trouble. If in two or three days the pain level has not decreased, then that means that what we're doing isn't working. Then the next option is to go in and do what they call a "nerve release", releasing the tissues around the nerve so the nerve won't be pinched or smothered.
So....as I write this, I don't know what the next few days of our lives will bring. I have done all I can as Adam's Momma. So now I leave the rest in God's hands and Dr. Paley's hands. Ha...that's a whole lot easier said than done! I want so much to fix this and make it all better myself. I hate to see Adam hurt so much. But, I do know that Dr. Paley's belief is that if pain is intense, then something must be wrong, and it's time to do something to fix the problem. He never wants his patients to suffer. I can't begin to tell you how grateful I am that he is the one who is doing our lengthening. I would never trust anyone else to do it. No matter what the next few days bring, I know we're in the right medical hands. And it helps a lot to be a woman of faith.
What does Adam think of all this? Well, he's not nuts about the pain. But he, too, has total faith in Dr. Paley. This weekend was rough and very tense since we didn't know what was going on. But I saw Adam's countenance relax tremendously today when we finally knew what was wrong and Adam could see that something was being done about it. I guess it must be that "light at the end of the tunnel" thing. He knows the pain is very temporary, and he knows he can handle it. What a trooper! I tell you, I learn everyday from this boy. He is going through this all with a huge amount of grace and courage, and I am pleased to have the privilege of being his Momma.
Until next time...Please keep us in your prayers. The road is rocky, but the journey is worth it.
Peace, Adam's Momma....Melissa
Hi Friends!
I know it's been a very long time since you've heard from us. Forgive please. The last several weeks have been very busy in so many ways. But we are all doing very well, and I want to take a few moments of your time to update you on all the Arnold events.
First, I must tell you that I've had a problem with my email program, so if you are receiving this directly from Mike at the PFFDvsg, then your address has been dumped from my system (and I haven't got much of a clue as to why my computer did this to me). Those who have written to us before, please write to us again and refresh us about your story and update us about what is new in your life. And those of you who are receiving this directly from me, then I still have your address, but we'd still love to hear from you and find out what's up.
As all of you know, in the life of a single mom there is rarely a thing called "spare time". And my time got filled up even more this summer. My job went to full-time plus a ton of overtime. I think most of you know that I work in tourism, so the summer is always busy. And it won't let up until the weather turns bad because I develop and run all the tours, and now that the school year has started, we are busier than ever with field trips for the kiddies. I have 130 third graders coming into town the end of this month for a folklore tour, and more coming for other tours later in the autumn. So... all of this AND Adam's lengthening. It's been a challenge, but as you will see when you continue reading this, it has been a wonderful and exciting challenge!
Adam is doing great. The last time I wrote an update, he wasn't doing well at all. Leg lengthening is not without its complications, and we were in the middle of experiencing some of those. We thought that Adam might be having the beginnings of nerve damage, and he was having terrible pain. But Dr. Paley, of course, quickly discovered what the problem was and immediately fixed it. --yet another reason why we are grateful to have found him instead of having to trust anyone else -- Yes, Adam was having nerve troubles. But it wasn't because his nerves were being stretched from the lengthening. Dr. Paley found that the two pins in his tibia had become loose and were moving back and forth. This was eroding the bone and irritating the nearby nerves. That's what was causing the horrible pain...that was Adam's body's way of telling us something was wrong. So immediately Adam was taken in for surgery to have the offending pins removed and to have two new pins inserted at different locations on the tibia. That did the trick, and we've been going gangbusters ever since.
Now, as of today, we are just a shade less than a half and inch away from Adam's legs being equal length and have only a couple more weeks of lengthening. We had hoped for about three inches of growth with this surgery. But it looks like we're going to make it all the way to five inches! Those of you who have met Adam will probably remember the huge lift he had on the bottom of his shoe before. And now he's wearing regular shoes and in a couple of weeks will be absolutely even.
I can barely believe it!
This is something we have all waited Adam's whole life for. This is what I have spent thousands of nights praying for. This is what we have all worked so hard for. And now it's really happening! I wish I could come to each of you and show you this miracle. And I wish there were words enough on this earth to adequately express how thrilled and grateful we all are.
For those of you on Mike's list who are still deciding whether or not to pursue lengthening, there are two things I must tell you. 1) It's not easy. This is the hardest thing any of us have ever had to go through, and I'd be willing to bet that there aren't a whole bunch of things we'll encounter in life that will be any harder. And 2) It's worth every bit of the blood, sweat, and tears it took to make this happen. I believe that. Adam believes that. And my other son, Daniel, believes that. All we have to do is to look at Adam's foot touching the ground and any doubts quickly fade away.
We are not done yet. Adam still has a couple of weeks to go in the lengthening. And even if we make it all the way to equal length this time, as Adam grows, the length discrepancy will return (his left leg grows, but at a much slower rate than the right one), and we will have another lengthening to go through. But we know that we can do it. We know this because we have already come so far. Adam has had one knee surgery, two hip surgeries, and now one lengthening. That's a bunch for a little boy to have to endure. But he has. And he has done it with strength and grace, and I see every day what a privilege it is to be his momma.
And each of you who have offered support and encouragement have helped us come this far and will help us in the future as we move forward ...inch by inch .. as a team. We are truly grateful for each one of you who have contacted us with your words of encouragement and other acts of kindness and friendship.
For those of you who are also facing these kinds of challenges, we stand with you. No one understands quite like someone who has already "been there, done that", and though we are not done yet, we hope that our story will help you in your own journey. I have had to make the agonizing decisions about what is best for my child. I have had to turn and walk away while my son is being wheeled into surgery (and those are the hardest steps to walk, no matter what course of treatment you have decided upon). I have had to witness his continued pain. But I am also seeing the results. And it is our hope that every inch of Adam's outstanding success will give you hope and strength.
I cannot end this update without saying one more thing: Those of you who know me, know that I am a woman of faith. And when speaking about Adam's success and health, I must give credit where credit is due. I must give a hearty and resounding public "thank you" to my God, for it is only with His gifts of strength and grace and guidance that any of this is possible.
Thank you all for caring and allowing me to share this update with you.We wish peace and health for all of you.
Melissa, Daniel, and Adam Arnold
Dear Friends,
Well, time for another quick update about our progress with a Dr. Paley lengthening. For those who have not read the other updates or our story "The Best Right Answer", please take a moment to go to www.ohio.net/~pffdvsg Many thanks to Mike & Cindy Malloy who make the PFFD Virtual Support Group possible and for allowing us to use that forum to share our story.
I don't know if what I'm sending is good news or not-so-good news... I think it's probably a mixture of both, with most of it good.
For us, this date is an anniversary. It was exactly two years ago today that Adam had his first surgery with Dr. Paley. It was to have his knee reconstructed. I remember that day so vividly. It was awful and wonderful all at the same time. A doctor in the midwest, one of the most experienced limb lengthening doctors in America, had told us that Dr. Paley would cripple Adam. He had said that what Dr. Paley proposed was impossible and that coming here to Dr. Paley would be the biggest mistake I would ever make. He said he knew Dr. Paley, and that Dr. Paley would mean well, but that he's only a dreamer and couldn't do anything for Adam except cripple him. It was those words from that doctor in the midwest that haunted me and tortured me that day two years ago. I had decided that maybe Dr. Paley is only a dreamer, but at least he and I have the same dream for Adam. That doctor in the midwest wanted to amputate Adam's leg. If Dr. Paley failed and the leg was ruined, how would that be worse than what the other doctor proposed? As scared as I was, as much as I questioned whether or not I had made the right decision for Adam, as loudly as that other doctor's words were echoing in my head, I knew we had to try. I had no other parents to talk to, no other patients to tell me if Dr. Paley was good or not. I only had the dream for Adam, faith in my God, and the belief that we had to try.
Now here we are two years later. Adam has had one very successful knee reconstruction, two successful hip reconstructions, and is in the middle of his first lengthening. And yesterday Dr. Paley decided that we should stop for now. Adam is not quite even, but he's very close. The bad news in this is that Adam has worked so very hard to become perfectly even, and now we know we aren't going to make it to that goal. Very close...but not quite there. As tired as he is from this whole process, he had tears in his eyes when we got the news. He wanted so much for his legs to be even. We all did. So there is sadness in this for us. But the good news ... the VERY good news...is that we gained 13 centimeters. That's just a tad over 5 inches. The doctor had told us originally that he was only going to try for 8 centimeters. Then when we achieved that, we decided to try for 10...and then 11...and we made it all the way to Lucky 13. We are not stopping because of any complications. But Adam is beginning to have trouble straightening out his knee, and Dr. Paley says that is the first sign that Adam's body is ready to stop. He said nothing is wrong, but we don't want to try for more length and risk having a less-than-perfect result. And as much as we all would like for Adam to be even, we are thankful to have a doctor who is not willing to risk our good results just to set some kind of record. Yes, after focusing so much these last few weeks on sprinting forward to that elusive goal of "even", having to stop before that goal is sad. But much more than that, we feel a HUGE amount of happiness and gratitude that we were able to achieve so much.
Now the next phase begins. We have spent almost 5 months doing the lengthening, and as I understand it, we will spend an equal amount of additional time in the Ilizarov device allowing the bone to harden. The new bone has the consistency of tooth paste right now, and only time and Mother Nature can make it hard. Then at the end of that time, the device will be removed and Adam will be in a spica cast for two months to allow the holes to heal where the rods had been in his bone. The final phase for this lengthening will be more physical therapy. Dr. Paley says we should count on 6 to 12 months of therapy to regain any lost range of motion and to make the leg strong. No one should get the mistaken notion that this is a quick or easy fix. This is a long and arduous journey. But I am totally convinced that this is worth every ounce of blood, every drop of sweat, and every tear cried... as long as the process is done by a surgeon who is extremely talented and who has vision and passion and a dedicated team.
I am so very proud of Adam for all he has done to make this happen. I am so very proud of my other son, Daniel, for all he did and all he sacrificed to make this dream happen for his little brother. And I am so very grateful to my God who has led us in the right direction and guarded us along the way, and who has gifted Dr. Paley and his team with the talent and vision needed to help make little boys' dreams come true.
I will continue to send updates until the very end of this process. I have received a ton of email from friends, relatives, and other parents who are going through PFFD with their child (and I hope you all will continue to keep in touch!). Some have written telling about complications they have had when getting their lengthening from Shriners and other medical facilities. Some have written telling of their success stories. And I am touched by everyone who has taken the time to correspond. The whole purpose in my sending these updates is to share with friends and family what we are doing, and to share with other parents what this process can be like when done by Dr. Paley. I know not everyone gets the outstanding results we did. I think that we have been especially fortunate. But I also know that we are all lost without hope. And for those who are still searching, those who are just beginning their journey, or even those who are in the middle of the process, I offer my story "The Best Right Answer" and these updates as a gift of hope, a vision of what the possibilities are.
Thank you for your caring, your friendship, and your willingness to allow me to share with you our story.
Peace,
Melissa, Daniel, and Adam Arnold
Dear Friends,
I wrote to you recently with another update about Adam. We have had wonderful results with our lengthening. We gained 13 centimeters, and though we had to stop a bit before we reached "even", we are thrilled and thankful about the great results we did get. Even with some complications, some pin infections, and troubles with the insurance company (which, by the way, are continuing...I got a call today that continued therapy has not been approved...so we're in for another battle), so much length gained was way more than we initially even dared to dream, and as one mother just pointed out to me...."even" with PFFD isn't the focus...just being able to lessen the gap even a bit is a miracle all by itself.
That same mother is one who has gotten her good results from a lengthening with the Shriners. Along with her congratulations about our success, she also gave me an open and honest lecture about the negativity toward the Shriners. Even though I stated in my story "The Best Right Answer" on Mike's PFFD web page that I understand that not everyone chooses lengthening as their Best Right Answer, and that whatever is chosen should be applauded, apparently I am coming across as not always supportive of the decisions of others. For each of you who has gotten that impression from what I have written, I would like to give you my heartfelt apologies. Please forgive me. I know the agony of the decision-making process and the struggle of treatment, and I ache for everyone who must deal with PFFD. I would also like to share with you part of my response to that mother.
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Here it is:
I understand your concern and appreciate your comments. But Debbie, I have my own horror story with the Shriners and have gotten email after email from parents who have had such a bad experience with Shriners. Just last week I got one from a mother whose daughter had gained 8 cm with a Shriners lengthening and then lost it ALL when they didn't leave the cast on long enough. They had to do it all over again...a whole second lengthening just to regain what they had already gained and lost. And I've seen dozens of patients who have finally had to come to Dr. Paley anyway after trying the Shriners and having them mess up the leg and they need Dr. Paley to undo the damage the Shriners did.
I understand completely that not all parents can come here and for them the Shriners is the best hope they have. And I understand that there are some success stories (though I have only heard two of them). For some it's worth the risk because it's the only and best hope for them. But many Shriners doctors are still saying - especially in complicated cases like Adam's, amputation is the only possibility and they say lengthening won't work. I'm really happy for every success the Shriners have. I cry the same tears all PFFD parents do and feel the same fears and hope the same hopes and celebrate the successes. It is never my intention to be non-supportive of those who choose the Shriners. But for those who are still in the decision-making phase, they need to know that amputation is NOT the only answer, and lengthening IS possible in many of the "impossible" cases - even a case as bad as Adam's, and though many doctors in various facilities - Shriners and non-Shriners - claim to be experts in the field of lengthening, in fact they are unable to get the outstanding results that are really possible. Before accepting ANY doctor's advice, and before accepting the Shriners advice simply because the Shriners do so much good in so many other medical areas, parents need to know that their treatment doesn't always turn out to be a rosy picture nor does it always have to be as bleak as some doctors make it sound.
I agree with you completely that "our job as 'seasoned' parents is to support one another regardless of how we personally feel about other parents' choices". That's absolutely true. I thought I had made that point in my story on Mike's PFFD web page in my story "The Best Right Answer". The updates were, as I had stated, to show what a Dr. Paley lengthening is like. Those who are still searching for answers need to know what the possibilities are. But also part of being supportive is to be honest with those who are searching. I won't sugar-coat the rest....as I said in the most recent update:
" Some have written telling about complications they have had when getting their lengthening from Shriners and other medical facilities. Some have written telling of their success stories. And I am touched by everyone who has taken the time to correspond. "
Parents need to know that not every experience with other facilities turns out as well as yours. They need to know, too, that there are some success stories other than ours. And not every parent chooses lengthening. Some have gone ahead and amputated. Some have done the Van Nes rotation. Some have opted to do nothing and wait for better technology. And I applaud them all. Many of the parents on my email list have chosen other paths. But ultimately we are all on the same journey, doing our best to obtain the best health possible for our child. I happily correspond with any parent who is on this journey, regardless of what path they have chosen, even speaking with some of them by phone when they have questions.
You said, " we get whacked enough by the professionals and others who don't 'get it'-- parents need to support parents." I agree completely. Please forgive me if I have "whacked". I have only tried to tell our story, my experience, my knowledge, and my opinions, and to do it all as honestly as I know how.
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Thank you, Friends, for allowing me to share this part of the letter to that mother. Again, please forgive me if I have hurt anyone. Just like you, I am only trying to do my best.
Humbly,
Melissa Arnold...Adam's Momma
Dear Friends,
I told you in the beginning that I would try to show you what a Dr. Paley lengthening is like. He has done so much for us with such great results that I would like to always be able to tell you that everything is just peachy keen. But I also want to always tell you the truth. And right now things aren't so peachy keen.
Adam has a pin site infection that just won't go away. They took a culture yesterday (Friday), but of course with this being a weekend, we won't know anything until Monday. We won't know until then either what antibiotic to switch him to. It's really awful... the odor, the pain, the whole thing is just bad. I'll be glad when this one is over.
Also, Adam has some sort of growth coming out of that same pin. I don't know. It looks sort of like a tumor, but the nurse who looked at it on Friday says it's not a tumor or anything to worry about, but something Dr. Paley should look at when he gets back in town on Monday.
And then, as if we have nothing else to deal with, his therapist said on Thursday that this very same pin that is causing us so much other trouble is also very loose. The x-rays on Friday showed that it truly is loose and eroding the bone. It's an essential pin because it's what is helping to hold Adam's hip stable during this whole thing. But ...Dr. Paley is out of town ... again. So we can't find out anything until then. The Fellow who is studying with Dr. Paley says that possibly Dr. Paley will want to do a pin exchange surgery like we did for Adam's tibia pins in July. But we don't know yet. Yippee...we have the whole weekend to worry. You know, we parents have this amazing capacity to imagine all the worst things when stuff like this happens. So, not much sleep for any of us in the Arnold household until we know something on Monday. This has been such a long road already ... I guess a little more lost sleep won't matter that much.
I really hate this not knowing. I wish I could just take control of this whole thing and make everything all better for Adam. What ever happened to the good old days when I could just kiss his ouchies and make it all better? I know this is probably nothing really critical. Everything will work out just fine. But right now I have no answers and nothing is within my control and I really hate that. More "puddles of tears" for me. Of course, that's an on-going thing. No matter what route anyone chooses to take in this whole PFFD thing, there are certainly plenty of tears and plenty of fears. Just because I'm totally sold on Dr. Paley's abilities and just because we've had great results and mostly are really really happy with everything, doesn't mean that I've ever stopped being afraid and I've certainly never stopped wishing that my child never had to go through any of this. The tears still flow very freely and the fears still make it a constant struggle to stay upbeat and positive.
You know, I've always tried to make these updates not just for those who are currently going through the same thing, but also for those parents who are still in the decision-making phase. And for those who are still deciding, I want to say... don't let any of this scare you off. I'll still tell you that Dr. Paley is the best I've ever come across. I'll sing his praises forever. But that's just me. Other parents have found other doctors, other ways to deal with this, other "Best Right Answers". The bottom line is that when dealing with PFFD, all of the options really stink, even the best ones. None of them are easy. And the best that any of us can do is to celebrate the good times, hang on for dear life during the bad times, and always do the very best we can for our kids. I am sure telling myself that a lot today ... my "best" isn't good enough to make things better for Adam right now. But it is my best, and I don't think anyone could do better, and no one can expect more from me than my very best. The same is true for you. Just always do your best. And remember... you're not in this alone. I'm here for you and the hundreds of other parents here at the PFFDvsg are here for you.
Thanks for caring. I'll let you know how this turns out.
Adam's Momma ... Melissa
Mike,
For your information and to share with the others who have been kind enough to care:
I wish I could bring you good news about Adam. I just brought him home from the hospital last night...the word from Dr. Paley had not been good when we saw him on Monday evening. No loss of length or anything horrible like that. But Adam had 4 pins that were very loose and eroding the bone. There was some talk that the upper pins might do damage to his pelvis if we did nothing, and the whole thing has delayed the consolidation of the new bone. Dr. Paley wanted him in surgery immediately. The operating room was booked, but Dr. Paley said this was urgent enough that they would just have to find a way to squeeze Adam in. So everything in our lives was dropped and I took Adam to the hospital Wednesday morning, the soonest possible day.
Everything went fine in the surgery, but it was much more involved than we originally thought. Instead of only 4 pins being loose, we found that 7 pins were needing attention. Two of the pins were no longer essential, so they were just removed. With the remaining five, they were removed, and then new holes were drilled and new pins inserted. The first Ilizarov Adam had on the one to stabilize his leg when he had hip surgery- had only a total of 7 pins. Though we have 11 now, this whole thing is quite astonishing to me now to think that, in essence, this is very similar to just starting over from scratch with practically a whole new frame. This is also extremely painful, just as the initial application of the frame. The difference is that when Adam got his Ilizarov in May, we stayed 4 days...this surgery that Adam had Wednesday is considered by the insurance companies to be "outpatient" surgery. The most they will allow is 23 hours. So Adam got up to his room at 8:30 Wednesday evening, and we had to leave by 7:30 Thursday night. Instead of the 4 days we had before to get him up and around and to get the pain under control, Adam had to get up and in the car last night for the ride home. Not only that, but Daniel and I both work tomorrow, so instead of lying in a hospital bed having his needs met, Adam will be with me at work for 12 hours. I don't know how he will stand it. As it is, neither of us is getting any sleep at nights. Adam is in too much pain to sleep and I'm up with him, of course. I just feel so bad for him. The only time I have any doubts about my choices for him is when he has pain like this. I know, of course, that when we all look back on this, we will see that we truly did choose The Best Right Answer for Adam. But this momma's heart has a hard time watching him suffer. We all just keep trying to look forward to the future when Adam's leg will be long and strong and he won't ever have to endure this kind of pain again.
Adam's Ilizarov frame won't come off until the end of March. Since we've already had one pin exchange surgery in July and now this one, and since we still have a few months to go, we are hoping and praying and crossing our fingers and wishing on every star that Adam won't have to go through this again before the removal in March. We are grateful for the huge amount of length we got with this session, but we are certainly fervently hoping that there will be no more complications. What a great peace it is to know that when we have complications, though, that we also have a surgeon who is skilled and talented enough to know exactly what to do to alleviate the problem. We are, as always, grateful to have found Dr. Paley.
We have always appreciated the caring and support of our friends, family, and our PFFDvsg friends, and that appreciation is compounded now when we have been going through some trials. Thank you for letting us know you care. That means more to us than I can find the words to tell you.
Peace,
Melissa Arnold ... Adam's Momma
Dear Friends,
Today I'm sending you an update of a different kind. I have nothing really new to tell you except that day by day Adam is getting better. He is down to taking his pain medicine about every six or seven hours instead of every three hours, so we're headed in the right direction. But in addition to that little update about Adam, it is Thanksgiving time again and I have a few thoughts to share about the subject of thankfulness in this season of holidays.
I firmly believe that it is VITAL that we families who are dealing with PFFD not allow ourselves to be bogged down in the mire of negativity. You know it is so easy to be overwhelmed at times. I certainly have been with recent complications and surgery Adam had to endure. But it is ESSENTIAL that we make every effort we can to offset the sadness and fear and weariness and all those other emotions we PFFD families have in common, offset that with remembering every chance we get all the things we have to be thankful for. And I'm not talking about just the big things. There are also a ton of little bitty things each day that I acknowledge as blessings and I give thanks for them. I am convinced that if we don't make a real effort to recognize everything we can give thanks for, the weight of this journey will destroy us. And SOME of those things I'm thankful for, I would like to share with you now. Also, I would like to give you some affirmations, just some little things I've learned in the day to day dealing with PFFD that I thought might help you. Adam also has added to this with his own advice - it is the same advice he put on a big poster and is hanging now in the Kennedy-Krieger physical therapy center.
I'm Thankful For:
You....You are here at the PFFD web page because you care and because you want to share in the journey of others. It is in the sharing and giving of support and strength to others that we are able to draw strength for ourselves.
Mike and Cindy .... The PFFD Virtual Support Group is an awesome gift of love, truly a part of our lifeline. It involves work and a huge commitment of time and emotional energy to maintain this web page. There is a special place in Heaven for them.
Centimeters ... especially the 13 centimeters Adam's leg gained this year. :-)
My Children ... They both have shown an incredible amount of grace and courage and strength and patience. They are my inspiration, and it is an overwhelming privilege to be their mother.
Dr. Paley and his team ... Of course. The other updates I've sent you detail so many reasons why they are on this list. And yes, there is money involved in the treatment, but I know that isn't why they spent 18 hours a day at the hospital. They truly love their patients and that love is certainly returned to them. They and our God have given us our miracle, and I will sing their praises forever.
My Fellow Employees ... Karen, my boss, truly the best boss I've ever had (except for when I worked for my Dad!). She has allowed us to grow and develop not only as employees, but also as people. I've worked hard for her, always giving my very best. And in return, Karen has cut me slack when I've had bad days, and she has always, without question or hesitation, given me whatever time off I need for Adam - even when I haven't been able to give her any notice. She cares about me and my boys and has become a friend we cherish. Suki, the one in our office who knows we aren't dealing with life and death in our business of tourism. Laid back and happy, Suki has an awesome sense of humor ... an important person to know when the job gets stressful or when my life has just become awfully hard. Mindy, ...so much to say about this lady who has become one of the best friends I've ever had. I could say more, but the bottom line is I love her and consider it a privilege to be her friend. They are all good people to have in my life, especially during this journey.
Friends across the country ... People we haven't even met yet who have read about us and are cheering us on, people we've known all our lives, and people in between. All of our friends are cherished treasures who have helped make our days brighter.
My Church Family ... Way beyond friends, these people truly are a special family for us. I came here prepared to do this all alone ... it's not realistic to depend on having deeply meaningful friendships immediately when moving 1200 miles away from home to a totally unfamiliar place. But as soon as we visited this church, we knew we had found a home for us, a family to belong to. They have been with us every step of the way from then on. The journey would have been so much more difficult without them for so many reasons.
My Mom, Dad, Sister, and other family ... Those 1200 miles between us never interfered with their deep love and outstanding support of our efforts here. My sister has sacrificed to come and be with us when she can, and was by my side for Adam's first pin exchange. It has not been easy for any of them. My sister has so many things in here life to juggle right now, but she loves me and does everything she can to encourage me and keep us all going, making time for me when I know she doesn't really have the time to spare. Mom has been here for a month at a time for each of Adam's reconstruction surgeries and for his lengthening in May. She and Dad run a business together, so it was a major sacrifice for her to be here by my side for a month at a time, and a major sadness for Dad that he couldn't be here too. It breaks my heart to watch Adam suffer, but Mom and Dad have had to watch not only their grandson suffer, but also they've had to watch their daughter suffer. No matter how old I get, I will always be their little girl, and I know they feel the same pain for me that I feel for Adam.
My God ... As you know, I am a woman of faith. That faith has sustained me, faith in a God who loves me, who loves my sons, and who has a perfect plan for us all. I am not Super Woman, but He has given me the extra measure of strength and courage and peace that I have needed when my own puny amount of those gifts ran out early in the journey, enough extra to make me appear to be Super Woman sometimes - even though I'm not really, not even close.
And now for those affirmations:
1. It's okay to puke, barf, or otherwise lose your lunch. One time when Adam had a pin infection and the stuff coming from his pin site was chunky, stinky, and nasty, I just couldn't handle it. We were doing pin care in the bathroom, and I leaned around behind Adam, puked, cleaned up, and then continued with pin care. I felt like such a failure, but you know what ... lightning didn't strike me down, Adam's leg didn't fall off, and we got over it.
2. Feelings don't make you a failure. It's okay for Dads to cry, it's okay for Moms to say "why?", and it's okay to wish your kid had been born "normal". Some days...and I really hate to admit this ... I see other kids with perfect legs out there running and playing when my son has 11 thick pins drilled into his bone and a huge metal cage hanging on his leg and I hate it all....long legs, short legs, this process, and the suffering of my child when others don't have to. It's not fair. Adam is a wonderful person. Why does he have to go through this? And some days, folks, I just really don't want to hear another mother tell me about how her life is so frazzled because she has to juggle her daughter's ballet class schedule with her son's soccer practice schedule. Oh really? Well, let me tell you she hasn't seen frazzled until she's walked a mile in my shoes, and Adam can't play soccer and he can't take special classes. He's in painful therapy every day working hard to make his leg long and strong. ... Not very nice feelings for me to have, are they? But it's honest. Some days that's honestly how I feel. Other days I can barely stop crying. I feel so sad and overwhelmed with all of this. But I'm not a failure because I have those feelings...and other not-so-perfect emotions. I'm not a failure because instead I'm honest and I fight the negative feelings and nurture and cherish the good feelings.
3. Mistakes happen even to good parents. Remember in an earlier update when I told you about a pin infection Adam had that I didn't treat soon enough? I listened to someone who gave me bad advice. I felt terrible. But many of you offered comfort to me, and when I came to my senses, I remembered what I tell other people: As long as you are doing your very best every day, nothing more can be expected of you. I didn't wake up and think, "Hmmm.... how can I screw up in Adam's care today? What kind of pain can I cause him?" No. I work hard every day to make sure that both my boys have my very best. I love them dearly, but I am only human and I make mistakes, some big, some little. We all do. It's okay.
4. Help from others is okay. We don't have to do it alone. I don't sew, so I accept help from a friend who has shown her talent and creativity in making special clothes to accommodate Adam's Ilizarov. I accept offers from people who want to take Daniel on outings they know I can't afford. He needs time away from all this, and I am grateful he has the opportunity. I accept clothes from friends whose kids have outgrown them and from the friend of a friend who used to own clothing stores. I accept grocery store gift certificates from time to time from people at church who want to be anonymous but who figure we might be needing a bit of a boost. I love my job, but it doesn't pay well and sometimes we have run into financial trouble. Why don't I go get a better paying job? Because, as I mentioned in my "thankful section", I get time off from work whenever Adam has needs. Period. No questions asked. I also get to bring the boys with me to work, so they aren't home without me nearly so much as they would be if I had a different job. I truly don't believe there's another job on the East Coast where I would have that kind of situation. Besides, I love what I do, so my stress level is way low...very important when I have a ton of stress in other areas of my life. So, after getting advice from my parents and my clergy, we all agree that for now this is what's needed. What Adam needs must come first or we are diminishing our purpose in coming here. So I accept financial help and other assistance from friends and caring others .. when I have to. For now. I hate having to do that. But I set aside my pride for this time in our lives so we can successfully accomplish our goal. I accept help when I have to, and I give help when I can. That's part of why I do the updates for the PFFD web page...it is one way I can give when I have received so much from so many others.
5. Keep your eye on the goal. My goal is lengthening, but whatever route you decided to take on this journey, your goal is the same as mine ultimately: we all want to do the best we can for our children. It is our responsibility to give them the best we can in all ways, to lay the very best foundation we can for them in every aspect of their development, so that when they are adults, they have the foundation they need to build a successful life. The journey is much easier when we stay focused on that ultimate goal we have as parents.
And finally, Adam's Advice. He came up with this on his own at therapy in
the middle of the most difficult and painful part of the lengthening, some
thoughts he wanted to share to encourage other kids:
1. It gets better.
2. When in pain, squeeze something.
3. You can do it!
4. It's worth it, and you'll like what you've done when it's done.
5. Good luck!
Keep in mind that our story is a Dr. Paley-lengthening story, and our
thankfulness, affirmations, and other thoughts flow from that experience.
None of what I have written to you in this is intended to judge or otherwise
push you one way or another in your dealing with your own journey with PFFD.
But I know that there are some things we all have in common, and I am grateful
for the opportunity to share with you a bit of our journey and a bit of our
hearts.
The Arnold Family, Melissa, Daniel, and Adam, wish you more things to be thankful for than you can count and the ability to remember those things when the difficult times come. That is our wish for you now during the Thanksgiving holiday, and always.
Dear Friends,
If I had to come up with a title for this update, I would have to call it "Puddles of Tears: Part Two". In the original story "Puddles of Tears" that I submitted to the PFFD web site almost two years ago (gosh, has it really been that long since I wrote The Best Right Answer and Puddles of Tears? almost...) the tears I described then were very different than what I'm going to tell you about tonight. The story was even written by a different person. Oh sure, it was written by Melissa Arnold, and I'm still Melissa. But two years of dealing with PFFD changes a person. So it's a different kind of puddle I've cried tonight....
We had a checkup with Dr. Paley today. It was a stunning visit! Adam's leg is healing much faster and better than ever expected. The new bone growth looked nearly solid on the x-ray! And so Dr. Paley loosened the Ilizarov. Where we had been turning the bolts before to do the lengthening, he did one final turn to release the tension. Until now the frame had been taking all the energy and stress every time Adam stepped down. Without the frame Adam's femur would have collapsed. But now like a birdie ready to be pushed from the nest to fly on its own, Adam's femur is now ready to bear the stress on its own. And walking on it now will help speed the healing process and make it stronger so as to reduce the risk of breaking later. At least this is how I understand what Dr. Paley explained to me today.
Man, oh man...it scared me to death when Dr. Paley turned those bolts to loosen the frame! You know, x-rays can sometimes be deceptive. What if this was one of those times and Adam's leg wasn't ready yet? What if what if what if???? You know, I trust Dr. Paley. Really I do. But...Well, the what-ifs must just be a Mom-thing. I couldn't help it. I talked about some inane thing...I don't even remember what, I just wanted to think of something else besides what Dr. Paley was doing. And then I held my breath...I don't even think my heart was beating. And.....he turned the first bolt...and.....nothing happened...and he turned each of the other three bolts...and....nothing happened. It worked! And then my heart just about beat me to a pulp, I was so excited! This was the final step before removal of the Ilizarov. We go back in a month and that day we set the date for the removal...the last surgery Adam will need for a few years. And then, like some sort of wonderful icing on today's fabulous cake, Dr. Paley confirmed what I had barely dared to hope....Adam gained so much length with this session that instead of two or three more lengthenings, we have only one more to go. Oh my gosh! Every bit of what we went through to get to this point has been worth it....every bit. No regrets. Not even one little bitty regret.
It was almost 10 years ago that I first found out that my baby was going to be born with a limb length discrepancy. Every day since then I have worked toward the goal of a whole and healthy leg for Adam. And every day I have begged God to give me the wisdom to know how to achieve that goal and the strength to see it through. We have moved mountains to make this happen. And I know that we're not done yet. We still have many more miles in our journey. But now for the first time in the last 10 years I'm feeling like the worst of it is finally behind us. We have gotten results better than I even dared to dream, and the entire family has grown in ways we could never have imagined.
And tonight I've got nearly a whole box of damp tissues wadded up beside me. In these last 10 years I can't even count the times I was certain that I would never be strong enough to do this. So many sleepless nights. So many headaches from trying to plot and plan and weigh each and every option and decide which doctor is telling me the truth about what's best for Adam. So many desperate prayers offered up, begging God to spare my son....and to spare me from having my heart broken time and time again as I watched my little boy suffer. Desperate prayers, too, for guidance and wisdom as I waded through the options and the medical-ese. So many days when the best I could do wasn't even "day by day" but instead only moment by moment. And now...here we are. Moment by moment and inch by inch we have made it this far, and now for the first time I really can see the light at the end of that tunnel. And, folks, I can't even find the words to tell you the relief I'm feeling right now. And huge amounts of gratitude. And joy...just flat out pure joy! Not only can I see the light at the end of the tunnel, but for the first time I am absolutely positively certain that we really are going to be able to make it all the way. Think of it....Adam has had one knee surgery, two hip surgeries, a huge lengthening, miscellaneous complications along the way, and a ton of physical therapy, hard work, and graceful endurance of huge amounts of pain...and we're headed toward the end of this lengthening ... and only one more lengthening to go. And not just the medical stuff. Gosh, there was the whole thing of dealing with a husband who most definitely didn't want medical intervention in this, and the divorce (and the long list of reasons why), and the more than 20 doctors who said this couldn't be done, and finding Dr. Paley, and working three jobs to try to get the money to get moved out here from Iowa, and the whole thing of being 1200 miles away from anyone who knew or cared about us and making a new life for my kids on the East Coast. Wow, what a busy way to spend 10 years!
I would never choose for Adam to have to go through this. If I could have, I happily would have taken on myself every bit of pain he had to endure. But God didn't spare us. He led us right through the middle of the storm. And now my entire family is stronger, both as a family and each of us individually. And I'm fully convinced that Adam will be able to zoom right past any troubles he encounters as an adult without even flinching because this has made him so strong. And tonight I feel like with God's help and the help of those God has always sent to lift us up and help bear our burdens I can not only move mountains, but I can pick them up and twirl them on the end of a stick. I once heard that some of God's greatest gifts are unanswered prayers. Tonight as I sit in my Puddle of Tears, I understand what that means.
These are good vintage tears...10 years in the making. No, we're not done yet. But I know we're going to make it all the way. And my wish for you is that no matter what road you decide to take in your journey, you have a night to enjoy some really good vintage tears of your own. Peace to each of you,
Adam's Momma ... Melissa
March 13, 1999
Dear Friends,
Wow. This is going to be one of the final messages I put in this journal. I can't believe how far we have come. It has been such a long journey! But here we are near the end with the worst of it behind us.
We had a few trials to get through since I wrote to you last. A couple of weeks ago Adam had a pin site infection that cropped up over night and was causing him a huge amount of pain. When he went in for therapy, it was so painful that the therapist called the doctor and we were seen immediately by Dr. Paley's nurse. X-rays were taken and Dr. Paley was called right away. I knew that it wasn't good because Dr. Paley was in surgery, and I figured it had to be something important to have him leave someone on the table to come help Adam. Dr. Paley sat down with us, examined Adam, and explained that, once again, we had a pin that was loose and rubbing against the nerves in Adam's leg. We had two choices. The operating room wouldn't be available for another week; we could wait until then and take off the whole Ilizarov. But Adam just couldn't go on in that kind of pain for another whole week. That would just be too much. Our other option was to have the offending pin removed right now. But remember, when we had pins removed before, that was done in surgery under anesthesia. I know it's been done in the doctor's office before, but I've never seen it done without even any pain medicine. But there was no time. If this is what we were going to do, we needed to hurry...Dr. Paley had someone waiting for him in surgery. So ... we braced ourselves and did what had to be done. Adam, bless his heart, was scared. He cried little silent tears as we walked to the "adjustment room". He shook his head and said through the tears, "Mama, I don't want to do this." I stopped right there and looked him right in the eye and said, "You know what our options are. Tell me now, considering the kind of pain you've been in, would you rather wait and have the whole frame taken off under anesthesia. We can wait if you want to." But no, he agreed that this was the best thing to do. He got up on the table and Dr. Paley got his supplies...including gauze to sop up the blood. When I saw that, I quickly explained to Adam that he shouldn't be frightened if he saw blood ... it wouldn't be much and Dr. Paley would keep him safe. As Dr. Paley started to unscrew the supports, I stood behind Adam with my arms wrapped around him in a big hug, holding his hand, and talking to him through the whole thing. "There you go, sweetie, hang on now. It won't be much longer. That's it. Okay. Hold on. Good boy. You're doing great." And more of the same. Then the pin was unscrewed from his bone and pulled out. And that was it. The worst was over just that quickly. The pin that was removed was from Adam's tibia, one of only two in the tibia helping to support his knee. Now there was only one remaining, so Dr. Paley got some hardware to fasten on to the frame and the pin to reinforce the remaining pin. He gave us last minute instructions about safety so we were careful to avoid a fracture in the tibia since there is now a hole where the pin had been. And I put the dressing on the hole. Amazingly, after this ordeal, Adam felt SO much better so quickly that he reached forward, shook Dr. Paley's hand, and thanked him for removing the pin! And off Dr. Paley went, returning to his patient in surgery, and off we went, happilly headed home.
And now here we are...merely days away from the end. This coming Wednesday, March 17, Adam heads into surgery one more time to have the entire Ilizarov removed. We made it! Sort of. The next step is a spica cast for two months and then 6 months to a year of therapy to regain motion and strength..basically to learn how to walk again with a leg that's 6 inches longer and a hip and knee that have had limited range of motion for a year. Okay, I know we're not totally out of the woods yet. But I know that unless something awful happens, the worst is behind us. We made it through the worst of the storm and have ended up with not only Adam's leg having grown significantly, but all of us having grown significantly in so many ways.
Ten years of praying and hoping and dreaming and striving and struggling to get to this point. I wasn't always sure we were going to make it! But now that we're here, it sure feels good! My Mom came from Iowa to help us one more time and to be with us for the celebration. Yes, we're going to party! I can't find the words to tell you how happy we are...and flat out relieved.
Okay,...now let me climb off Cloud Nine for a bit. No, we're not really done. As Adam grows, the length discrepancy will return. His left leg grows, but at a slower rate than the right leg. So we'll have to do this again. BUT, we gained so much with this lengthening, that Adam will never again have such a big discrepancy. It is estimated that the difference will be 3 inches at the most. Gosh, after doing 6 inches this time, only 3 inches will seem easy next time! And the important thing is that we KNOW we can do it next time. We know Dr. Paley can do it, and we know we have what it takes to get through it.
So, onto the next steps of this lengthening. I'll let you know how it goes through the two months in the cast and how therapy goes in the coming months. I'll stay with you until the very end of this. But you've seen the hardest part of it in previous entries in this journal. Now it's up to you. If you've been through it, you know I understand what you've endured. And if you're still deciding what to do for your child, I hope that I've given you an honest and open view of what the possibilities are.
Keep your fingers crossed for us in the coming months; as I mentioned, we're not out of the woods yet. Thanks for making this journey with us. Your continued prayers and kind thoughts have helped more than I can find the words to tell you.
Our best to you,
Melissa, Daniel, and Adam Arnold
March 24, 1999
Dear Friends,
This update I must keep brief. I thought we were into the easier part of this whole journey, but I was wrong. We found out this evening that Adam must go into surgery first thing tomorrow morning to correct yet another complication.
Since Adam's Ilizarov removal last Wednesday, he's been having pain. And each day it was getting worse. We tried muscle relaxants. We tried strong pain medicine. And today he phoned me at work and told me that the pain was terrible and the medicine just wasn't helping. I phoned Dr. Paley's office immediately and they told us to come to the hospital right away. Dr. Paley was in surgery all day today, but he would make time to see Adam. I guess after two and a half years of working with our family, Dr. Paley's office knows that Adam doesn't complain and I don't phone unless something is really wrong.
I dropped everything at the office, went home to get Adam, and zoomed over to the hospital. Such a comfort and convenience to live only 10 miles away! Xrays were taken immediately and rushed into the operating room so Dr. Paley could take a look at them. And a few minutes later, the xray tech came to me and said, "Mrs. Arnold, could you please come with me...without Adam." Oh my gosh...you know, in other situations, if the doctor wants to see the parent alone, it often means that either death is near or something else is horribly wrong. "Okay, Melissa, this is NOT a life-threatening thing," I told myself, "This just can't be that bad." Well, I was mostly right. Adam isn't going to die, and his leg isn't going to fall off...but the news wasn't good. The femur has a small fracture where one of the pins had been, and the bone has bent...it now has a curve similar to the outside curve of the moon. That's what has been causing the pain. The more the bone bowed, the more intense the pain got. Dr. Paley said we could just leave it like that....but that's not the best choice because length is lost and the bone isn't it's strongest shaped like that and the small fracture may go all the way through. So....in we go bright and early tomorrow morning for more surgery. Dr. Paley will try to bend the bone back into shape. He said right now it has the consistency of a green twig. But if that doesn't work or if it won't stay, then he'll put a metal rod on the side of the bone to hold it in place until the bone is solid and strong. That, of course, means that Adam would have another surgery beyond tomorrow to remove the metal rod.
Adam is feeling awful. This will be his tenth surgery in two and a half years (including the knee surgery and two hip surgeries). This lengthening has been going on almost a year, and the poor little guy is just tired of it all. He has worked so hard, and tried to be so brave. But enough is enough. I've never seen him so depressed or so tired. We'll all be glad when this is all successfully over. We are still sure that this has all been worth it. But ....some days it just seems harder than we can tolerate anymore.
By the time that you get this e-mail, the surgery will be over and we'll be resting in Adam's hospital room. I know as we look back on this, we will smile and know that we have been fortunate. The complications could have been worse. Dr. Paley keeps wanting me to let you know that sometimes things don't go as well as our lengthening has. Not everyone can expect our same good results. We've just been really blessed. But...we're not done yet...obviously not as close to the end as I thought. So please continue to keep us in your prayers and think good thoughts for us. And please be thinking of Adam as his spirits are so low right now.
Thanks...your support means so very much to us.
Adam's Momma
March 27, 1999
Dear Friends,
Wow. What a wild trip we've been on. Let's see. I wrote to you Wednesday evening, with Adam's emergency surgery being only hours away. Thursday morning, 6 o'clock in the morning we were there and ready. There had been a cancellation in Dr. Paley's schedule, but that got filled up. Didn't matter. There was no time to wait. Adam HAD to go in right away.
They sawed the cast off in the pre-op section so that the dust wouldn't contaminate the operating room. Adam was trying to be brave about all of this, but when Dr. Paley was sawing the cast off, Adam was trembling like a leaf. No tears. Just shaking so much that I thought at first that he was vibrating from the saw cutting through the cast. But when the saw was turned off and Adam was still shaking and he was telling me how very cold he was, I knew my brave boy was trembling. Moments later he was rushed into the OR. I was told that this would be an hour procedure. The doctor would try to bend the bone back into shape and possibly put a rod in the bone to hold it in place. Two and a half hours later Dr. Paley came out and told me that the bone had snapped in his hands. It was a bit of a struggle to get the rod in after the bone snapped. Another incision had to be made in Adam's thigh for what the doctor called a "thumb hole" so he could try to guide the rod into the second piece of the femur.
Then he told me this: we lost some length. One of the centimeters we worked so hard to get was gone now. I know it's only a centimeter and we're so very lucky. But I had spent most of the week before without sleep as Adam was in pain. And I just wasn't in the frame of mind to accept a loss...even a small one. Lucky wasn't what I was feeling. I think the worst of it was imagining how Adam might take it. He worked so hard and suffered so much to get those centimeters. And we were all so tired.
He took it well, of course. He always does. I told him how easily we could have lost ALL of what we had worked for and how we were so lucky and so blessed to still have all but one centimeter. Of all the things that can go wrong with a lengthening...many of which are irreversible and devastating...we only have lost ONE centimeter. He slept pretty well Thursday night. Then Friday PT came in and got him up. That's when we found that his new cast didn't fit well. Rick, the awesome cast man, came up to see what he could do. First, it was too tight around Adam's middle. So a half-moon was cut out of the front to allow for his tummy. And then the back of the upper part the cast at the top back of his thigh was way too tight. It was cutting into his leg. A couple of inches of that needed to be cut. Unfortunately, that was over the incision that was made to insert the rod. Cutting the cast caused Adam the worst pain he has EVER felt...worse, even that the first pin care or the first physical therapy. He stood there and we hugged each other while Rick cut. It took what seemed like forever. Adam couldn't help it...he screamed out in pain. We both knew Rick is a caring man who would do his absolute best to NOT hurt Adam. But it still was excruciating. All I could do was hold Adam and cry right along with him. He'll tell you today that it was worth it because he feels so much better, but right then it was a horrible thing to go through.
We brought Adam home last night. He slept pretty well. We all did. It has been an exhausting week. I didnt' even have the energy to check my e-mail last night....I know some have written in response to the previous update from Wednesday. But I haven't read any of them yet. I thank all who wrote though. When I get home from work tonight, Adam and I will have a good time reading through them!
Our big risk right now is infection. Dr. Paley said we must be diligent in checking for that. He said that with the rod in the bone, there is little chance of more breakage, but infection is a very big possibility. And Adam does have a temperature and severe nausea today. So the journey continues. I thought we were near the end of this lengthening, but obviously we still have more to go. We must get through this, get the cast off, and then two months later we go in for surgery to remove the rod. And....who knows what else.
But through it all, we have been very fortunate. We have missed the really bad complications. Adam still has most of the length he gained. And we're healthy and happy. And we still all believe with all our hearts that no matter how difficult, the Journey is worth it.
Thanks again for standing with us. We cherish each of you.
Adam says hi!
Peace,
Melissa
May 7, 1999
Dear Friends,
Okay, this one really is one of the final entries in our lengthening updates. We began this part of our 10 year journey on May 12 of last year, and here we are finally being able to breathe a true sigh of relief.
We went to Dr. Paley yesterday for a check up, and the cast was removed. We expected to have the cast split and be able to have it off for baths and therapy, but Adam is healing so well that that intermediate step wasn't necessary. For the first time in a year Adam's leg is totally free! There is a mere 1 and 1/4 inch lift on his shoe. What a change! We have one more minor surgery in about a month to take the rod out of his bone, and we have a year or so of therapy to regain total function in his leg. But the hardest part is truly behind us.
I stood in the hospital and cried yesterday ... even had to wait a bit before leaving because I couldn't see through the tears to drive. But now I'm quite numb. Ten years of trying to get to this point. And just this quickly it's all over....well, except for the rod removal and therapy. Wow. Now what? I've spent so long pushing and pushing and working and striving. I'm not sure what the future holds now. We came to Maryland only to get this treatment for Adam, and now I must start planning for where to go next and what to do with our lives until Adam faces his final lengthening in a few years. I've started back in college. Daniel is finishing his high school work and will start college soon. Adam will be taking art classes and baseball training. I'm setting up speaking engagements to go share with churches and other groups about holding steady during adversity. And this next year will pass quickly.
I'll probably have a few more entries in this journal before it's all truly over, but not many. So I want to take this opportunity to one more time tell you how much you all have meant to us. It has helped so much to know that you have stood with us in thought and prayer. And, hopefully, this journal will help in some small way those who come behind us as they prepare for their own journey. And a huge word of thanks to our God who has been faithful to His promises to never leave us or forsake us and to carry us in the palm of His hand.
Thank you all. Thank you from the bottom on my heart. Adam, Daniel, and I will remember you fondly forever.
And now on to the final stage....rod removal and therapy. Yippy!
Our best.
Adam's Momma, Melissa Arnold
June 10, 1999
Dear Friends,
You know, this is "Update #13" in this special journal of updates...if I believed in luck I would say this must be our "lucky 13", because this is the one where I get to tell you that this part of our long journey is finally over. We did it! Last week on June 3 the rod was removed from Adam's leg. He's free and BOTH his legs are long and beautiful! We still have a year or so of therapy to strengthen muscles and learn again how to walk properly. But after all we've been through, therapy now is going to be a piece of cake. So....unless something goes wrong -God forbid- , this will be the last entry in this collection of updates.
As I bid you farewell, I would like to leave you with some thoughts and encouragement:
1) Lengthening is VERY difficult. And ours was not as difficult as some can be. For example, Katia, the beautiful little girl from Spain has had one complication right after another. The most recent occured just this past week. After spending three months in a cast following the removal of her Ilizarov, a day after removing the cast she fell and broke her femur. Dr. Paley operated on Monday and was able to save all of the length Katia had gained, but she's now back in an Ilizarov for 3 more months until the femur heals. All of the complications have been fixable, but all of it has also been very difficult on the whole family. If you choose this option, go into it with both eyes open and realize that you're in for a rough ride.
2) No matter how hard it has been, Adam, Daniel and I all agree that EVERY moment of our journey has been worth it. We are all stronger, happier and closer as a family and individually for having faced the challenge and having done it together. I would never ever wish this kind of thing on anyone, and wore out my knees praying -begging- God to spare Adam. But now that we have made it through, we understand completely that it is true that sometimes God's greatest blessings are unanswered prayers. We have all grown in so many ways we could never have imagined. We further believe wholeheartedly that ANYONE can do what we did who wants it badly enough.
3) Don't be afraid to accept help. You can make it through this, but you can't do it alone. And there are well-meaning people out there who really truly want to help. How do you repay them for their kindness? You don't have to. You just have to do the best you can for your children every day, And then...the magic starts....when you have made it far enough in the journey that you can reach out and help others who are just beginning their journey....WOW...what a wonderful blessing it has been to us to be able to reach out to others with hope and help. It all adds a whole new dimension to what we have been through with PFFD and a whole new level of meaning and significance to the journey. None of it would be nearly so fulfilling without being able to reach out, even in small ways. Thank you to those who have allowed us to do that.
4) If you have other children and are afraid of how this will disrupt their lives, don't underestimate what a great empowering example this can be to them. Every day they will participate in the process and they will finish the journey knowing in their hearts that even the most difficult goals can be reached. They will learn about patience and compassion and perseverance and courage. What wonderful tools to give them as they travel to adulthood! They will be far better equiped for success than most of their counterparts.
5) A popular book is called "Don't Sweat the Small Stuff". I would change that a little and encourage everyone (even those who aren't dealing with PFFD) to "Celebrate the Small Stuff", that is, be willing to celebrate even the smallest triumph. Days will come when things are going really badly, but if you have celebrated everything you can along the way, those bad days will be MUCH more bearable. Okay, here's an example: Last November 7 Adam said we should have a celebration. I initially told him no because all the autumn activities had just passed and we had Thanksgiving and Christmas coming up. Besides, what was special about November 7 that we should celebrate? I thought about it more, and you know, after so many pain-filled days when the lengthening process was active and so many years of struggling to get to this point, November 7 was a PERFECT day to celebrate....we celebrated because the sun was shining and it was a beautiful day and we three were together and Adam didn't hurt. That day life was good. So we had a party that evening and began what will be an annual celebration ....November 7th Day...the day to celebrate "just because". Do that whenever you can. Trust me, it really helps, and creates some wonderful memories.
6) Lengthening isn't for everyone. For some, it just isn't possible physically. For others, they just can't handle the process. That's okay. Whatever your "Best Right Answer" is, lengthening or otherwise, go for it with all the strength and gusto you can find in your soul. Set your goals for you and your child, and then inch-by-inch work toward a successful outcome, accepting nothing less than triumph. You CAN achieve the most difficult goals if you steadily go forward, inch-by-inch.
7) And one more time I want to openly thank my God, who has been my comforter, my source of strength, and the One who has shed light on our path and made the journey possible.
Peace to all of you and best wishes as you travel on your own journey,
Melissa, Daniel, and Adam Arnold
rabblebabble@hotmail.com