Discouraged and fearful

Ethan had his 1st PT session.  They took measurements and could only get him to 6 degrees below neutral on his right foot and 4 degrees below neutral on his left. This is where we were before the surgery.  I do have to differ with them (but I’m not an expert).  When we are doing at home therapy, he is able to do some of the exercises that he was unable to do before his surgery.  He can now actually walk on his heels and the bottom of his foot is off the ground.  That didn’t happen before, he could only pickup his toes.   I am hoping that since he has been “frozen” for the better part of 10 weeks that maybe he just needs to be stretched out.  She said that a normal person would be able to flex 10 degrees above neutral.  Well, we have stretching exercises to do at home and we are to go to PT twice a week. 

The first week, they could only see him once, so I scheduled the next week for 2 sessions and they called me days later and cancelled one of his appointments because they are understaffed and could only do 1 session next week. I am fed up!  I am thinking about taking him to get a second opinion.  There is an orthopedic clinic in Colombus, GA called The Hughston Clinic.  I also noticed for the first time last week is that the right leg he turns out is underdeveloped compaired to his left leg this is from the knee down.  He is still having trouble with his stamina and weakness.

To be or not to be released — NOT!!! No improvements :(

Ethan had another Doctor’s appointment to see if his gait and tightness has improved so he could be released for normal activity.  Nothing improved.  His gait is showing no improvement as he is still walking with his feet turned outward and he is still tight so no improvement on flexibility.  The PA said that he does not normally order PT for kids like Ethan, but in his case, we are going to gait PT twice a week for 8 weeks to see if they can help Ethan work out his issues.  The PA noticed like we have that Ethan is still “protecting” and “guarding” his lower legs and not allowing them to loosen up.  Maybe the PT can help him with that. He still has wears his braces during the day, and now night splints, and then maybe he will be released.  I am now getting nervous that after all Ethan has gone through with this lengthening, we will be no better than we were before the surgery.

Setback :( - Going to see the Doctor

I knew our good fortune with this process was too good to be true.  I am calling this morning to get Ethan another Doctor’s appointment.  Ever since he started walking last Wednesday, he has been dragging his right foot.  He turns it completely out where his toes are pointing straight out to the side and he says that when he walks with his foot pointing forward, it hurts a lot.  He is walking stiff legged.  Also, it seems that he is still tight on his left and loose on his right.  I am just concerned and hopefully we can get into a little therapy to help him out.

Ethan is walking - no boots, no casts

The doctor released him to walk in shoes with his braces for 4 more weeks.  The doctor said that Ethan is about 2 weeks ahead of schedule.  That he had really taken the time to allow his tendons to heal properly.  Ethan is on restricted activity for the 4 weeks but if all goes well, he will be released for full activity on October 10th.  The doctor said that he does feel some thickening on both tendons with areas of softness which meant that the area hasn’t quite healed, but no concern.  After the 4 weeks, he may put Ethan in night splints but unlikely (still an option).  So, after the doctor visit, we went to buy Ethan some shoes (Under Armour) and when Ethan put them on, the first thing he said was, “I can’t stand because my ankles are bending.”  He said it so matter-of-factly.  He has flexibility now and has NOT put those boots back on.  Over the next 4 weeks, we are going to work on walking and endurance while walking.  He is walking with still knees (but I think it’s more of him protecting his legs).  After the 4 weeks, that’s when we will see if this whole ordeal paid off.  We will put him into some kind of therapy (doctor doesn’t think he needs it), so we will do it on our own.  So far, very pleased.

Ethan’s breakthrough

He is finally walking most anywhere.  My mom brought him some crutches and he uses them to help him not to put so much weight on his feet and he is going everywhere.  He is so excited finally to be able to go to the kitchem, bath, and outside.  YEPEE!!!

Week 5 and walking

We have made it to week #5.  Ethan had his 5 week appointment on Friday.  He was able to get his braces before the Doctor appt.  He is progressing very nicely.  They are still stressing that he does not flex his feet upward to risk the tendons being lengthened too much.  He can walk now with the braces fitted inside the Robo Cop boots.  Our first thoughts were YEPEE, he can walk!!! Yes, we knew he would be weak and would need to take it slow, but what we didn’t anticipate was the pain that he has been in.  Both feet in the arch area hurt very badly when he tries to walk.  This will take time for subside because his feet has gone through a tremendous change.  He does not want any help and he is grabbing onto everything he can find for support.  I am going to see how he does today and if the pain is getting better, if not, I will get him some crutches for support.  He told me, “See mama, my feet hurt but I’m not complaining.”  He is tough and determined through the pain.  But I think he’s getting better and he’s happier to have some freedom.  He is only has stamina to walk from the living room to the bathroom and back.  At this point, if someone were to ask me if I would do it over again, my answer would be most definately.

Ethan will be in the Robo Cop boots for another 6 weeks and 4 weeks to his next Doctor’s appt.

4 weeks down - School

Ethan has had a very quiet 4th week.  We are getting into our routine of school.  We have had no more episodes at school..whew…and ever since Ethan was told that he had the option to take the boots off, he has kept them on 100% of the time at school.  He learned how to pop a wheelie and is getting better driving himself around.  So all-in-all, nothing much to report this week.  8 more day until he can walk…yepee!!!!

Worst night and day yet

After we got home from our 3 week appointment, things were going along as normal.  Ethan went to bed and begin hurting at his tendon sights.  He was crying and very uncomfortable.  My husband gave him some Motrin and about 3:00 am, he drifted to sleep.  We got up as normal, couldn’t put on the school uniform shorts, so I just let him wear navy blue gym shorts (at least they were one of the school uniform colors)  and he was so sleepy, that he didn’t complain too much about his legs other than they were sore and hurting, so I gave him another dose of Motrin and off to school we went.  I went to work (45 min drive).  About 9:30, the school nurse called and said that Ethan was crying and in her office.  He was in a lot of pain.  On my way to the school, the nurse called again asking if there was anything she could do until I arrived to help him.  By this time, I could hear him hollering in the background.  I told her to go ahead and take the casts off and rest his ankles on some ice.  After the longest drive ever, I walked into the nurses office where he was resting comfortably.

I had already made him another Doctor’s appointment after the nurse told me that he shouldn’t be in that much pain.  His main complaint was that his tendons were hurting and his heels were hurting.  The casts were rubbing his heels.  He can’t walk and now, he can’t crawl (bulky things).  Off to the doctor’s office.  Dr. McCartney took Ethan back promptly and after speaking with Ethan, asked him, “if they were hurting that bad, why didn’t you just take them off?”  Huh??  Take them off??  That simple??  Duh!!  Dr. McCartney said that we can remove them as long as he is just laying around and watching TV, bathing, or when he gets uncomfortable at school.  He said the beauty of removable walking boots….to take them off.  More than anything that had happened, I finally saw  clam and relief come over Ethan, and for the first time in 24 hours, he settled down.

We went to the mall to eat lunch, walked briefly in 2 stores, and rode 1 hour back home.  He didn’t cry, fuss, or complain one time.  He was back to his old self.  We got to his Mimi’s and he laid on the couch, and we took them off. Then he had to go to the restroom. So, we had to put the socks and braces back on and go.  He came back to the couch and we removed them again.  He is settled.

Now for the worst part of all…. OMG the smelly feet.  I was blown away when we pulled the shocks off.   They are toxic.  Definite detox is in order :)

He is still really sore when he stands but that is normal from him going to being bound in tight and hard casts to a free walking boot.  It should ease off in a few days.  Poor calves, he has none.  They are so very small, like he almost doesn’t have any :(

14 days from today to walking !!!!!!!!!!!!

3 weeks down & counting - Post-op visit today!

We have now completed our third week.  Ethan has been dealing with the wheelchair better than I expected.  He has been crawling around alot and walking on his knees.  We had his 1st post-op doctor appt today.

Dr. McCartney first removed the casts.  His legs are small which I hope he will be able to build them up after he is able to walk.  His feet look great!  He has an arch now (small but very pronounced).  The bone above the arch that was collapsed and falling to the ground, is now very high up on his feet.  The arch was impressive.  His tendon incesions are about the size of a marker dot and when they heal completely, they will not be noticable.   I was extatic about his progress.

He put Ethan in hard, plastic, velcro walking boots.  And no, he still can’t walk.  These are alot bulkier than the cast and he can’t crawl without his heel moving up and down.  This is a big No-No, so we are struggling with that.  He can take them off to take a bath, which is great!

I did find out some interesting information.  Yes, the casts and boots are to protect his tendons from rupturing by too much activitiy, but more emphasis, stress, and caution is put on stabilizing his feet NOT to move upwards.  He can move his foot downward all he wants, but not upwards.  Reasoning is because he could stretch his tendons too much and that is just as bad as having them too short.

We also had to go and have Ethan molded for his braces, which to my delight, will be discrete and fit right in his shoe with only 2 small tabs sticking out (but not very noticable).  He will first wear these in his walking boots and finally in his shoes.

He will be out of a wheelchair in 2 weeks.  YEA!!!!!!!!

Week 2 down and still going

We have finally completed week 2.  Nothing much to report except I didn’t realize or prepare for the mental drain.  We all are tired of doing everything for Ethan.  He is getting demanding and not asking so much anymore, so I am working hard with him to ask people kindly to do whatever for him and not demand that they do it.  Eli (my 4 year old) is especially tired of running around doing things for Ethan, but he is a trooper.

Also, Ethan is a very active little boy.  He has so much energy and cannot expel any of it.  I am trying to think of ways for him to use up some of that stored energy and have come up with nothing.  We take daily walks (or 2) around the neighborhood and we go out and do activities, but without him running around to burn that energy, he gets overbearing in the evenings.   He also has trouble sleeping at night.  Not from the casts, but he is not tired.

Hope everyone has a good week and the next post will be after our 1st      post-op doctor’s appointment next Thursday.