FEBRUARY 22, 2017

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I mean it is not like we are choosing what to have for dinner, we are choosing to go through a lengthy process of 6-7 surgeries over the next view years with no guarantee his foot will ever be "better"  vs. having his foot amputated.  

They were so kind there and answered all of our questions.  She made sure to tell us there were no wrong questions.  She talked to little Jacob as well as me and Jacob.  She made him feel comfortable and like his thoughts and opinions and questions were important. 

His one and only question he had was what would a prosthetic foot for him look like. The only one they had there was an adult woman's foot but it was good to see the idea of what it would look like because I wasn't sure either.  But because he would have the amputation right at the ankle it would be like this tube that his leg would go into.  It would strap shut with a velcro strap and the foot is attached to that.  

He would wear regular socks and shoes and if he never wanted anyone to know, they wouldn't have to know.  

He would wear it during the day and the only time he would need to take it off would be at night while he sleeps.
He could get it wet, like when taking a shower. 

With this they would be able to adjust for his leg length differences and align his hips so he would not walk with a limp anymore, which ultimately will relieve some strain in his stronger side.  Which is also a great thing.  If he was to go with the multiple surgeries, they would have to do another leg lengthening surgery which only helps a little and as he grows, still will never be even.  

Later on he could get a running foot, which are the ones like you see on tv that are the metal hook looking ones.  Those are for running because they have springs in them made for that. Those are not covered by insurance, but they often award grants for them.  But for now we are not worried about that one, we just want him to get adjusted to his everyday foot.  

He will need physical therapy after the surgery and fitting of the prosthetic foot for learning to walk with it and since his hips will be aligned different as well.  Thankfully she said we can find a local place and not have to drive down to Phoenix for that.  

Once they do the surgery his healing time is about 6-8 weeks before he can even be fit for the prosthetic foot. He has to be completely healed so that there is no chance of him breaking open his stitches.  This is why I am praying we can get him in for surgery right after school ends this school year, so he will have all of the summer to heal and then get adjusted to his foot before school starts again next year.  

I went in to this appointment nervous, I knew this was ultimately what we wanted for him but still as a parent you always hope you are making the best decisions for your children.  No matter what choice we went with our end goal has always just been to make sure Jacob can have the best quality of life no matter what.  If we thought surgery would give him that we would go with that, if we felt the amputation would give him this we would go with that.  

Another thing the girl mentioned which we never even thought about was that at least his footit being the left one, he will still be able to drive one day.  I never thought about this and she said well it really isn't that far off, which is true.  Yes, in 4 years he can drive.  YIKES! Ok let's not even talk about that right now! One thing at a time. 

Another thing she told us about is a camp that is partners with Hanger Clinic.  It is called CAMP NO LIMITS.  It is for children with limb differences.  She is looking into all of the information for us.
She is also looking into finding a family with a child that is the same age as Jacob for him to talk with.  This was something I really wanted to happen.  I told him I can't tell him what it will be like, his dad can't not even his doctor can tell him how it will be, what it will feel like, the emotions he might be feeling only someone in his position would be able to really give him a good idea of these kinds of things.  

After going to this appointment and having all of our questions answered, I feel like it just confirmed that this is the right choice.  

I continue to pray each and everyday for guidance in this kind of decision we have to make, for health and healing for our little guy.  

Then we even came home from the appointment and this kid decided he wanted to make dinner.  We had grilled Costco hot dogs and homemade potato chips. I cut the potatoes and he fried them, grilled the hot dogs in a pan and did it all with a smile.  :)  

I called the surgery scheduler yesterday to see if she could even give me an idea of when they could fit him in for an amputation surgery.  This surgery only take about an hour and half she said, so it might be that we could get in sooner rather than having to wait close to 6 months if we opted for the other surgery.  We also have to see our orthopedic doctor once more before any surgery as well. 

The prosthetic place called me today and the girl just wanted us to know she is working on finding us a girl his age.  She just wanted to make sure we knew she was working on it.  I think that is awesome that she called us just to let us know. 

Thank you for following along on his journey.  

~Nicole