2nd Opinion Appointment

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!

Just Let Me Cry

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

But for now, for this moment

Just let me cry

I know it’s hard to see

But the pain I feel isn’t going away today

Just let me cry

Until every tear has fallen

Don’t ask when and don’t ask why

Just let me cry

I believe that everything happens for a reason

Crazy

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.