I know everyone says this, but seriously...I can NOT believe Dylan is ONE!! As I was going through some pictures today from when he was first born and throughout his first year, they all seem like they just happened yesterday, so how can he possibly be a whole year old!?!
We feel incredibly blessed to have Dylan in our family. He is such a sweet, happy boy and is honestly such a joy to have around. He has this smile that lights up a room and it's hard to not be happy or smile when you are around him. We love him SO much!!
In remembrance of this past year, I picked out a couple pictures from each month of Dylan's first year of life. What an incredible year!
Newborn
1 Month Old
2 Months Old
3 Months Old
4 Months Old
5 Months Old
6 Months Old
7 Months Old
8 Months Old
9 Months Old
10 Months Old
11 Months Old
ONE YEAR OLD...these were taken today!!
From THIS to THIS in a blink of an eye :)
WE LOVE YOU DYLAN BOY!!! Life wouldn't be the same without you!
We went to an Amputee Clinic put on by our Children's Hospital on Nov. 22nd. It was really nice and very informative. We spoke to another surgeon (this makes 4 in total), a prosthetist (and we finally know how to pronounce that correctly) :), and a physical therapist...along with like four or five nurses or assistants or something. We had quite the full room. The surgeon "absolutely" thought we were doing the right thing by choosing amputation. He said with Dylan's deficiency, lengthening would be a very long, painful process and most likely wouldn't yield as good of a result as the amputation. Most of the information was a lot of what we have already heard. But it was comforting to hear, once again, that we are doing the right thing. He went over the general process of the surgery and answered any little questions we had. He talked about the difference in a Symes amputation and a Boyd amputation and said that Dylan really would be just fine with either one. They will most likely try for a Boyd, but he said that once they get in there they may not be able to do it depending on if they can get his calcaneous to move where it needs to be. If not, they will do a Symes. He also talked about future surgeries and said it's almost inevitable that he will need some minor surgeries here and there in the future as he grows....in regards to his femur and just other "maintenance" surgeries. But hopefully nothing major. The physical therapist said he most likely won't need any long term physical therapy. We'll be shown some things to do with him when the time comes that will help him, but since he's getting it done young and since his strength and development is already so on track, he should be fine and be able to figure things out. The prosthetist said that he will most likely be in his first leg around 6 weeks after surgery....so somewhere around the end of February. That's exciting!
They had a little boy, maybe age 6 or so, come in and visit with us. He showed us his prosthesis and took his leg off for us so we could see his stump. It was nice to be able to see how "normal" it all was for this boy and not that big of a deal. It was comforting.
Overall, it was a great experience. We'll be going to these clinics for most of our follow up stuff in the future, so it was nice to meet the team. Everyone was SO nice and SO caring and Dylan loved them all. He had so much fun crawling between them and talking to all of them and playing with them. It was really cute! These people are going to be our orthopedic family so it was nice to get to know them. :)
Anyway...Bryson and I were talking about how crazy it is that it's just a little over a month away!!! Eek! So exciting and terrifying all at the same time. :) Good thing we have birthdays and Christmas in between now and then to help us get our minds off of it for a little bit.
We have one more appointment with our original surgeon, Dr. E, on Dec. 7th. And then we'll be meeting with the prosthetist at some point before surgery to try to get a molding of Dylan's foot. And then I think that's it before surgery day.
Hope you all had a great Thanksgiving! It's been a crazy, hard, emotional, trying, but fun and blessed year for us! We have SO much to be thankful for.
OH...and guess what?? Dylan will be ONE on Thursday!!! I can't believe it. He's growing up too fast!
So, after emailing back and forth with Molly, our nurse that always accompanies Dr. E at all of our appointments (yes...I said OUR nurse...she's all ours, and don't try to tell me otherwise) :)...we decided it would be best to schedule a date for surgery now rather than waiting until our December 7th appointment with Dr. E. Our worry was that if we waited until that appointment, our options for surgery would be at a time that would be less ideal (i.e., further out than we were hoping for). We are noticing more and more how Dylan's leg is kind of slowing him down a little. Not really, I mean, he's making it work and he figures out how to work around it, but we see his desire to move more and more and we were hoping to have surgery done sooner than later to allow him the freedom to walk when he wants to...or at least closer to then. Another thing we were taking into consideration is that unfortunately...or I should say, fortunately my husband has a job...unfortunately, he's a tax accountant and busy season starts towards the end of January and we were hoping to not have surgery in the midst of busy season. SO...with all that in mind we thought, why don't we just make the appointment. (Sure, like why don't I call and make an appointment to get my hair cut, no big deal...same thing, right? haha) We know this is the right thing to do, we know we need to do this, we know he'll be better off after, etc....but oh my goodness...I did not realize how emotional it would be to actually have a date set!! The second I got the email confirmation that January 11, 2012 at 7:30 AM was the day Dylan would have his surgery...I lost it. All of a sudden I was questioning whether this is what we should do. Are we sure we need to do it NOW? Can we wait a little longer? He's making it work...he'll be fine if we wait a little longer, right??? And the answer is yes...he would be fine...but would it be best? And we know it is best to do the surgery sooner than later. There is no point in waiting...other than to put off the inevitable. But yes...scary. The unknown is so scary. There are so many questions in regards to that day and the whole situation....it's SCARY! But I know with Heavenly Father in our hearts and by our sides and carrying us through this...we will be fine. Dylan WILL be fine. I'm so grateful that we have so many family and friends who have been so amazingly supportive and comforting during this time and I know will be there for us when things get harder. I love you all!!
I text Bryson after I got the confirmation email and said "Mark your calendars...January 11th...worst day of our lives". But I digress...worst day of our lives? No. Scariest? For the time being...yes. But a start of a new and better life for Dylan? Absolutely. So it can't be the worst. I won't allow it. I know it'll be hard and scary...and I probably am not at all prepared for how hard and scary it will be....but I can't wait to be on the road to Dylan being able to walk on two even legs and carry on as "normal".
Today we had an appointment with another pediatric orthopedic surgeon. We were encouraged by Dr. E to get additional opinions and so that is what we are doing. We didn't want to tell her what Dr. E's suggestions were or how we were leaning until we heard her own opinions. We were kind of expecting to go in there, for her to look over his x-rays and Dylan himself, and then hopefully give the same recommendations that Dr. E has given us. However, after chatting with her for just a minute or so, she said she had already looked over his x-rays that she had gotten from Children's Hospital on her own when she heard we had already been there, and then she started going on about lengthening and how effective it can be and how even she was surprised at the quality of life kids who have lengthening can have. She said that she doesn't do lengthening on the lower limbs so she's not really the person to talk to about it, but that there was another doctor who happened to be in the office today who is the lengthening go to guy in the area, and asked if we wanted to talk to him. We were kind of caught off guard because all we had heard and read and what not was that lengthening was pretty much out of the picture because of Dylan's discrepancy. But we figured, we might as well talk to the lengthening doctor and see what he had to say. Honestly, I was kind of worried that he was going to be super positive that he could do lengthenings and that we should seriously consider it...which isn't a bad thing, but we have finally come to the point where we feel really good about amputation and feel like this is the right thing to do, so hearing that there is another viable option would make things confusing. But we didn't want to discredit that it COULD be an option and so we waited for him to come in. While we were waiting for him, I asked the original surgeon that we met with that IF we did chose the amputation route, what would she suggest in that route. She said she would do a Boyd amputation and for all the same reasons that Dr. E gave us for why he would do a Boyd. She said a lot of the same things Dr. E has said, so that was all comforting to hear.
So the lengthening guy finally comes in and says that he has looked over Dylan's x-rays and has done some measurements. He said Dylan currently has a leg length discrepancy (LLD) of 7 cm and a projected LLD of 25 cm at age 16. (by the way, he said these measurements were all rough measurements and may not be exactly right, they could be even higher, as it's hard to get accurate measurements from x-rays when the child isn't standing) He said that is a significant LLD and basically said that if it were his child, he would go the amputation route. He said lengthening is obviously always a possibility, but in Dylan's situation it would have to be a very aggressive lengthening route. Something that he, himself, a doctor who does leg lengthenings, would not suggest. That was SO comforting to hear. We've always felt amputation was the right way to go, but hearing it from someone who is the "go to guy for lengthening" in the area, made us feel even that much better about it. He then went on to also suggest everything that Dr. E has suggested as well...Boyd amputation, straightening of the tibia, the possibility of having to do something to the femur in the future but to not worry about it now, etc.
After discussing a few other things with the lengthening doctor, he left and the original surgeon came back in and said that it sounds like amputation is recommended across the board. I'm still not sure why she was so pro lengthening at first. My guess is that most parents don't want to talk about amputation (it's a "scary" thing to talk about) and so the doctors maybe assume that we want to discuss other options first. That's my only guess because after the lengthening doctor suggested amputation she was right there on board with him. :)
We left the appointment feeling really good. We got confirmation that what we and Dr. E believe to be the best route, does, indeed, seem to be the best route. That is always nice to hear and helps us feel even better with our decision.
Next up...we'll be attending an Amputee Clinic in a month. There we will talk to additional surgeons and prosthetists, who will help with final confirmations on exactly what needs to be done. Then two weeks later, in the beginning of December, we will meet with Dr. E again and hopefully be able to schedule surgery for shortly after that...at least that's the hope. :) I don't know why we would need to wait any longer so I'm assuming that is what will happen.
I'm so torn...a part of me is like...can we put it off just a little longer? Purely because I'm scared for my little boy and I know it's probably going to be an emotional time for all of us. And then the other part of me is like...can we please get this done already??? :) He is becoming more and more mobile. He stands up ALL the time now. I would go as far as to say he spends more time standing up then he does sitting (maybe not quite...but pretty darn close). He LOVES to stand...whether its on just his long leg with his little leg dangling or if it's on both legs with his long leg bent to match up with his little leg. And he's even taking steps here and there...cute little lopsided steps along furniture or holding onto our hands. I swear, if he had two good legs, he'd be very close to walking by now. So for that reason I want to get him two even legs ASAP so he can just go as freely as I know he would love to. I know he'll figure it all out (most likely before surgery since it's still a couple months away), because he's figured everything else out and made it all work...but I know having two even good legs would make it so much easier for him. Oh yesterday...he stood all by himself not holding onto furniture for a second or two. He pulled himself up to standing, held onto the furniture for awhile like he always does, and then just let go and stood there on both legs for a second before falling over. SOOO awesome! He amazes me!
Here are some videos of the little man in action. :) This one is from when he first started standing.
And these are him now. :) He is a mover!
OH...and Happy Halloween from my cute, little pirates. Arrr!
Let me be real here for a second. Not that I haven't been in the past. I just feel like I get a lot of "wow, you're handling this so well" or "you have a great attitude", etc. comments and I would have to agree, 90% of the time. I just want people to see or understand the other 10%. And if I'm being really honest, when Dylan was first born, those percentages may have been switched...10% of the time handling it well and 90% of the time a complete mess. :)
During the first few months after Dylan was born, during the time when we were trying to come to terms with what this all meant, whenever someone found out Dylan's story, there were many who would say something to the effect of "it could be worse". I know they were trying to comfort us, and I appreciate it now. And I truly do know, and I knew then as well, that it really could be worse. However, at that time, it felt like they were trying to brush it off as no big deal. And to me, it was a big deal. A really big deal. I didn't feel like my world or my family's world was ending, I didn't feel like Dylan's world was ending. I KNEW everything would be okay, I had faith in that. But that didn't change the fact that it still hurt. It hurt to think about how this would affect Dylan's life. It hurt to think about the pain this would cause him, both physically and emotionally. No parent wants to know that their child is going to suffer in their life. It hurt. It made me cry, a lot. There were days when I would be totally fine. And then there were days when it consumed my every thought. I would watch Dylan going about being the super happy baby that he is and the only thing I could think about was his future. His somewhat unknown future. And I would cry. I would hear those people in my head telling me it could be worse. And I wanted to scream out that I KNEW it could be worse, but that didn't make THIS pain go away any quicker. I felt like I wasn't supposed to be crying about it because it really could be worse and how selfish of me to think that our situation was bad when there were families losing their babies. Families that didn't get to take their babies home and enjoy their smiles and coos. There was this internal battle I was having with myself. The one half of me wanted to just cry because it hurt and the other half of me was urging myself not to because I felt weak and selfish.
My husband kept reminding me that it's all relative. Yes, it could be worse, but this is still hard for US. We haven't had to experience the loss of a child or having a child with more severe disabilities or health problems, but that doesn't mean that what we were experiencing wasn't hard. He said it was okay to cry. And I eventually gave myself permission to cry too, without feeling like a failure.
Eventually the tears slowed down. It was easier to talk about it, think about it, and handle it. But I still had a day here and there where I just needed to cry a good cry, to release all the emotions that I was feeling, and then move on. I still have those days. They seem to come in waves. I'll go weeks without crying about it and then we'll go to the doctors and all of a sudden it's a huge reality check and this all is really happening and guess what...it's hard...and I cry.
Hilary Weeks is one of my favorite Christian singers and she has this beautiful song called Just Let Me Cry. In explaining the story of why she wrote this song, she said, "Crying is part of healing. It is a necessary step in the process. It doesn’t mean we don’t have hope or faith. It doesn’t mean that we don’t believe in the Atonement or the Savior’s ability to heal us. It is simply part of the journey back to joy."
So yes....I cry. But it's okay.
I thank Heavenly Father every day for how healthy Dylan is, because I do truly know it could be worse, and we are so blessed that this is all that it is. I thank Him every day for how happy Dylan is. I thank Him every day for the little "fighter" personality Dylan was born with. I know that will make his life easier. I thank Him for the knowledge that we are only tested as much as we can handle and that somehow we (Dylan and all of us) will be able to handle this, even if it seems hard now or at times. I thank Him for the very real knowledge and faith that this WILL be okay. I thank Him for the comfort and peace that he has brought me. I thank Him for the beautiful boys I have been blessed with. I thank Him for his trust in giving me these children and letting me be their mommy. I thank Him for being an understanding, loving Heavenly Father...even when I cry. No, especially when I cry.
I know this probably won't be the hardest thing we will have to face in our life. But right now, it's hard and it's okay to cry about it.
I hope that if you're reading this and if you are going through a hard time, no matter how insignificant it might seem to others (or you might think it seems to others), I hope you know that it's okay to cry. Keep your head up, keep your faith up, but don't be afraid to let the tears flow...and then continue on. We all face challenging times, all in varying degrees. People tell me all the time how they couldn't imagine going through what we are going through and I can't imagine going through what others are going through.
So am I handling it well? Do I have a great attitude? I would like to believe so. But am I human? Yes. And I don't want people thinking that I'm not and that they need to not be either.
Here are the lyrics to Just Let Me Cry...I love them.
Just Let Me Cry
By: Hilary Weeks
I believe that everything happens for a reason
We’re not just tossed by the wind and left in the hands of fate
But sometimes life sends a storm that’s unexpected
And we’re forced to face our deepest pain.
And when I feel the heartache begin to pull me under
I dig my heels in deep and I fight to keep my ground
Still at times the hurt inside grows stronger
And there’s nothing I can do but let it out
So just let me cry
I know it’s hard to see
But the pain I feel isn’t going away today
So just let me cry
‘Til every tear has fallen
Don’t ask when and don’t ask why
Just let me cry
When I agreed that God could put this heart inside me
I understood that there would be a chance that it would break
But I know he knows exactly how I’m feeling
And I know in time he’ll take the pain away
But for now just let me cry
I know it’s hard to see
But the pain I feel isn’t going away today
So just let me cry
‘Til every tear has fallen
Don’t ask when and don’t ask why
Just let me cry
I have felt joy, the kind that makes my heart want to sing
And so my tears are not a surrender, I’ll feel that way again
Sometimes I can't believe that what is happening is actually happening. I've never once questioned why did this happen, to Dylan or to us. I don't know why I haven't. I just know it was meant to be or else it wouldn't have happened, so there is no point even going there and asking that. But what I can't wrap my mind around sometimes is the fact that it is actually all really happening. It's so crazy to me. I've joined a couple support groups with a bunch of other parents whose children have fibular hemimelia as well and it's been SO great talking with them and reading their stories. It's all so comforting and brings me so much peace and confirmation that Dylan will, as we have always believed, lead a "normal" life. But I am finding myself talking to parents about things I never thought I'd be talking to people about. Amputation, surgeries, prosthetic legs. I'm asking questions I never imagined myself asking. I find myself writing an email to one of these parents and I have to convince myself I'm not just making this all up in my head as some big elaborate made up story, but it is actually all very real. I'm answering other people's questions about my own child's situation that I never thought I'd be answering...to friends, family, fellow FH families, church members, strangers. I'm researching the different types of amputations, below the knee, above the knee, boyds, symes, etc., etc. I'm looking into different hospitals and options as far as that goes. I'm trying to figure out the financial aspect of it all and how we are going to handle that. I'm trying to imagine where we will be a year from now in terms of pre-surgery or post surgery?, in a house (which would be ideal) not in a house?, etc. I try to imagine how well Dylan will handle the surgery. I watch videos of other kids with FH who are walking in their prosthetic leg for the first time or learning how to put it on and I cry tears of joy for them. Never thought a video like that would affect me the way it does now. And I try to imagine Dylan taking his first few steps with his prosthetic leg and I can't wait for that moment. ...It is all so mind boggling to me still. Not in a bad way...just in a "this is all kind of crazy" way.
A year ago, I never would have imagined my life to be taking this route. But I'm not mad or sad or upset or even stressed by it. It is just life. And I'm grateful for the wonderful people we have met because of it and will continue to meet. I'm grateful for the new appreciation of life we have in our family. I'm grateful for my growing faith and testimony in a loving Heavenly Father because of it. But I'm especially grateful for Dylan, no matter what package he came in...this boy is amazing and perfect and I'm SO grateful that he is able to be with us as a part of our family.
My life is "perfect". My children and husband are "perfect". No matter our personal little imperfections or the little imperfections our life may experience...it's all perfect in my eyes because as crazy and unreal as it all seems sometimes, I couldn't imagine it any other way and now that we are on this road, I wouldn't want it any other way because of everything we have gained and continue to gain because of it.
Okay...enough blabbing. Just a lot of what I've been thinking lately. Haha.
Today we had another appointment with Dr. E. It was just another x-ray and check up. Everything is looking good. Dylan's hips are starting to calcify and they look fantastic. Good news!! His leg length deficiency is closer to 40% shorter than his other leg now, so that has gotten worse (originally it was around 30%), which only makes us feel even more comfortable with going the amputation route. Dr. E said that as soon as we are comfortable to move forward we can start talking about what to do next. We let him know that we are comfortable with our decision and he agrees that this is the best option for Dylan. Now we just need to figure out what amputation route is the best. Dr. E feels a below the knee will work, the amputation being right at the ankle. At that time they would most likely also straighten his tibia, as it is quite bowed. There are two different types of amputations (Syme and Boyd) and Dr. E thinks the Boyd might be best for Dylan's situation since his deficiency is so great and the Boyd would add just a little extra length to the residual limb, which might be beneficial for a prosthesis. This is something that we will want to confirm with a prosthetist (the person who fits, makes, etc., the prosthetic limb(s) Dylan will be wearing the rest of his life) as he will be able to know what will work best in a prosthetic leg for Dylan's specific situation. We are going to be attending an Amputee Clinic in November (unfortunately Septembers and Octobers were already fully booked so we couldn't go sooner). There we will be talking to additional surgeons and prosthetists....who will be able to analyze Dylan's situation and come up with what they feel will be best. This is all to help us feel more comfortable by getting additional opinions. Plus, Dr. E says it is always nice, as a surgeon, to have multiple people and opinions behind him, agreeing that what we are doing is, indeed, the BEST for Dylan's specific situation. As far as time frame...Dr. E was pleased to see that Dylan is progressing developmentally. He's crawling like a pro, he's pulling himself to standing and putting weight on both legs. So he said that ideally we should do the surgery before/when he gets to a point that his foot is hindering his development. In other words, before he starts walking or right around then. So, we're now looking at surgery most likely being done in the next six months or so. We'll have another appointment with Dr. E in December, shortly after the Amputee Clinic, and my guess is that we will start making plans then as to when the surgery is going to happen. We'll have multiple opinions by then and should really know the exact direction we are going to take, so I don't see why there would be anymore hesitation. But as always, only time will tell.
The last thing discussed was the length of his femur. He said it won't be a problem for the time being. They can adjust his gait with a prosthesis. Later down the road, around age 8 or 10 or so, there might be the need to either do a lengthening on his femur to make it match his other femur, or there is the option to stunt the growth on his good leg to let his shorter femur catch up in length. But both of those would be down the road quite a few years and wouldn't affect anything that would happen now.
We are so appreciative of Dr. E and his thoroughness in this whole process. He wants to do what is best for Dylan. And we couldn't be happier with him and the way he has gone about this. We trust him and feel comfortable with him and know that he is an answer to prayers.
We left the appointment feeling really good about finally being on the road that will lead us to surgery and some sort of finality. Obviously, we know that surgery is not the end all, in fact it is really the beginning of a life long journey of other questions and things to figure out, but it will at least bring closure to all the major decision making and being in limbo about what is going to happen.
I would once again be lying if I said this was easy. In fact, I've spent most of the time writing this blog, bawling. The reality of what is actually going to happen has hit me hard all of a sudden. I still just can't believe we are talking about what we are talking about. Amputating our son's leg...who would've ever thought we would be discussing this. It's crazy. And emotional. We KNOW we are doing the right thing. We KNOW this is the best option for Dylan. We KNOW he will be fine and will live a great life and won't be hindered by this, but will be made stronger because of it. It's just the thought of what we have to do....it's hard to swallow. And now being on the road to it all actually happening just makes it all so much more real. It's actually going to happen. And it's going to happen soon. ...sigh... I can't imagine what I will be like when it gets even closer. :) I'm so grateful for a loving Heavenly Father and Savior, Jesus Christ, who knows what we are all going through and is right there with us the whole way...comforting us and bringing us peace and carrying us through those times that have and will be hard. It makes dealing with all of this so much easier.
Some pictures from our visit today. We brought Kaden today and he was so good and loved playing with all the toys at the Children's Hospital. We have such handsome boys. Molly, the nurse that always comes in with Dr. E, always comments about how much she loves Dylan and he's so cute and she was SO excited to finally meet Kaden and was pretty smitten by him too.
Oh, and check out Dylan standing on both legs!! So awesome! (Don't mind the blue tape on his back. Kaden did a little decorating with some duct tape.)
Dylan is 9 months TODAY! And he started full on crawling TODAY! Such a big boy. Time is flying TOO fast! He's been really close to crawling for about a week, but couldn't quite get his legs to follow his hands forward. :) Well, today he figured it out and he hasn't stopped. We are so proud of him! We knew his little leg wouldn't hinder his crawling. Since his femur is shorter on his little leg and his knees don't match up, we knew he might be a little lopsided, but you can hardly even tell. His little leg is perfectly bent, his long leg just sticks out to the side a little to compensate for the extra length, but it doesn't seem to change the way he crawls. Just a slight adjustment on his part. We LOVE seeing him progress! Way to go Dylan!!
He has also started trying to pull himself up on things. This has been more of a challenge for him. Poor guy. His little leg is so much shorter than his long leg that it's really hard for him to get balance and he really struggles to get standing. But he continues to try and we know he'll get it! We have another appointment with Dr. E in a couple weeks and we'll be asking about some sort of brace with a lift maybe. Something that will help him stand a little easier (and possibly walk in the future) until surgery. Who knows. We are anxiously awaiting this appointment. We really hope we'll get a better idea of when surgery might happen.
Dylan is a happy, smiley, easy going, energetic baby boy. We LOVE having him in our family! Dylan was born with a condition called Fibular Hemimelia and Congenital Short Femur. Like Nemo in Finding Nemo, Dylan was born with a "lucky" leg. It's been an emotional roller coaster, but we know without a doubt that Dylan will be JUST fine. All we need to do is "just keep swimming" through this journey we've been given. As a family we will get through this. Dylan...he will conquer this!
This is a blog following Dylan's leg journey. Dylan had a below knee boyd amputation in January 2012. We knew this was the best route to ensure that Dylan has a fulfilling, active, joyful life. Join us in this journey!
We hope to be able to connect with other families who are going through the same things as we are. Please feel free to contact us at dylanslegjourney@gmail.com
You can read how we first found out about Dylan's leg condition HERE.
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