Tenotomy

We arrived at Shriners this morning right on time, and within just a few minutes were up in a room waiting for the doctor. The fellow came in and asked us some questions while examining Elias. Through talking with the fellow, we found out that the doctor we would be seeing that day actually specializes in Arthrogryposis. He asked us what the current plan was for correcting his feet. We shared with him what our doctor back in Boston is planning to do, and he went on his way to share what he learned with the doctor. We went into the casting room and waited for a bit for the doctor. One of the things we always do is try and time out Elias' bottles around his castings. While they are applying the cast, I feed him the bottle, and he doesn't cry or fuss...hes totally distracted, works like a charm! So at this point he was getting pretty fussy as it was time for his bottle. The doctor came in and the fellow explained to him Elias' issues. The doctor then proceeded to tell us what he wanted to do...and it wasn't just to put a new cast on...

He said he wanted to do a tenotomy on his achilles tendon (cutting the tendon). Now, this is a procedure that our doctor was planing on doing toward the end up Elias' series of casting. This doctor however said that in his studies, he's found that by doing the tenotomy in the beginning of treatment for the clubbed foot, he acheieves much higher levels of success, and most don't need any other surgeries. Our goal (and our doctor in Bostons goal) all along has been to try and avoid surgery as much as possible. So what this doctor was saying made sense. But we weren't prepared to make a decision like that so quickly. We knew the tenotomy would happen eventually, but right then and there?! With a doctor we hardly even know and will probably not see again? Kevin and I told the doctor we weren't comfortable making a decision like that without conferring with our doctor first. So they called up to Boston and were able to get ahold of our doctor. The doctor explained to our doctor what he had found in his studies and shared his opinion of what treatment should be like. I got on the phone afterwards, and my doctor reassured me that we were in good hands. Apparently the doctors actually knew each other, which was nice. I was afraid our doctor back in Boston would feel underminded. But our doctor explained that this doctor knows what he's doing, and if he has a way that will help Elias achieve greater mobility in his feet, then we should do it.

So with that said, we gave consent to have the tenotomy done right then and there in the room. First then numbed the skin with some numbing cream for about 25 minutes. Then Kevin and I left the room while they gave him another novicane shot and then did the tenotomy. We were back in the room with him within 5 minutes. He was a trooper! He was upset, but we calmed him down relatively quick. They then put a plaster cast on to continue to turn his foot to get it positioned correctly. Immediately after the tenotomy, even with the cast on top, there is already noticeable improvement. Its amazing how much that tendon was holding back his foot from making much progress.  They took before and after pictures, so as soon as I get those in my email I'll post them.

Shriners

So we're now in Pennsylvania (have been since Satuday) and are enjoying lots of time with family and friends. This past weekend however, Elias' cast on his clubbed foot started slidding down. NOT good. So we took it off on Monday, were advised by our doctor to go to CHOP to get a new one, and everything would be hunky-dory, Well...our insurance told us they wont cover anything out of state unless its done in the emergency room. Getting a new cast is not done in the emergency room, even though it is absolutely needed. So then we called our doctor back, and he told us to go to Shriners Hospital in Philly, because they will cover the cost if insurance doesnt. So I went there Tuesday, but they said they couldnt see him that day and that we'd have to come back Thursday morning, which is great. The sucky thing is that every passing moment that his cast is off, we're loosing progress. Because his foot is more rigid, its automatically wanting to turn back inward. Not so great. I'm hoping we didn't loose much of what we gained over the past 2 months. But the way his foot now has to be casted, his leg isnt as bent, and he's doing a pretty good job of wiggling and inching it down.

BUT he is growing leaps and bounds these past few weeks! He's starting to coo and babble, and hes batting at the toys that hang above him on his little jungle gym. His head control is awesome and he loves head banging daddy. I wouldnt say he has absolute full control yet, but in just a couple more weeks he'll be there.

2 Casts now...

So Elias had an ultrasound on his right foot today (the one that is not casted). They found that he actually has a dislocated bone thats causing his foot to turn upwards. Its a condition called Congenital Vertical Talus. They'll need to do surgery, but it can't be done until he's about the year old. So they casted his right foot today as well. The cast will help stretch the skin and tendons so that its ready come time for surgery. He'll only be in this cast though for a few weeks (hopefully). Then he'll wear the boots with the bar on both feet (like originally planned). He is NOT happy about having this leg casted. He really was starting to kick and push off of us alot, and now he can't move either legs. If he hasnt been sleeping tonight, he's just screaming. Its so hard as a mom to watch him be so frustrated and not be able to fix it. But we know this is whats best for him and will be SO much better for him in the long run.

All tuckered out

Both casts

We had family portraits taken yesterday, and I'm pretty pleased with how they turned out!

This week just flew by. We leave on Satuday to go back to PA for Christmas. I CANNOT wait. I've got a ton to do around here though before we leave. I wish I could say I'll be cleaning tomorrow, but Ive gotta go into Tufts again for my post pardom visit and a shot for Elias. I'm sure he's gonna love that! Cast today...shot tomorrow...greeeeat.

Smiling!

Last Saturday night when I was getting Elias ready for bed, I could have sworn he smiled at me. Then he did it again...and once more. And thats when I knew he smiled for real. Before this, he's grinned a little here and there, but it was so random, and not really in response to anything. Of course everytime I go to grab the camera he looks at me like I'm nuts. I tried to upload the video of him smiling on here, but it must be too big...its not working. But I did snap this one today before he got his haircut (don't worry...its all still there...he just needed it trimmed around the ears).

My cuddle bear :)

We had a check-up with the ENT last week. He said his breathing has improved, most likely simply because as he's growing, his nasal passages are too, so theres more room to breathe through his nose. The orthopedist said his foot has hit a point where we're probably going to talk about getting surgery soon. Surgery will happen only once he feels the casts are no longer working. He's still getting a little bit of movement each week after each cast, so we haven't hit that point...yet. But the doctor thinks it wont be any longer than 2 months before he gets the surgery. When he does end up getting the surgery on his foot, he'll have the skin tag removed on his ear. The ENT told us though that because of the way his jaw is slightly set back, he might have some trouble with anesthesia and breathing tubes. Thats pretty scary. But the doctor said the fact that he just wants to be available in the hospital during the surgery as opposed to wanting to be in the room says that he isn't THAT worried. He just wants to be available just in case. So that makes us feel a little better. Its still scary though...

More casts

On Monday we went to Tufts for a new cast and a hand appointment for Elias. His foot is progressing, slowly but surely. The doctor said "this is defintiely an arthogypotic foot", meaning its much more rigid and resistent to change. It IS progressing with every cast, but its not moving as quickly as it would if it were just clubbed feet not associated with a syndrome. So we're going to continue casting to get as much correction as possibly before surgery is necessary. Surgery is our last option. The less invasive the procedures and surgeries are, the more normal and natural his foot will be. On the other hand, the more they have to do surgically, the more stiff his foot will be as he grows and develops as time goes on. So like I said, surgery will only be after we're confident casting has taken his feet as far as they can go. With that said, the doctor said he will most likely need a surgery in a couple months after a few more casts. Its just way to tight and resistent, and casting will only do so much for him. So we'll see. Hopefully his casts do enough for him to need only minimal amounts of surgical attention.

Then we met with the hand doctor for his right wrist that he likes to hold bent and his left thumb that is basically always stuck to his palm. His right wrist however is improving on its own, and it doesnt look like it'll need much attention, other then some exercising. He's holding it more and more in the neutral position (not bent), and I think him now starting to move his arms and hands more is helping a lot. Regarding his left thumb...the doctor said he wants to put his thumb in a series of casts, similar to his foot, to try and stretch it out. Once its stretched to a point where he likes it, they'll give him a nifty little splint to wear all the time. Thankfully, this splint will just be for his thumb, and he'll have full mobility of the rest of his fingers. I'm excited for this because with his other splints we came home from the hospital with, it completely tied down his fingers and he couldnt move them at all. So he can still practice touching and grabbing things. Then once he's around a year old, the doctor said he'll need a surgery to release the thumb. I'm not sure about the details of the surgery (seeing as its almost a year away) but similarly to the feet, we want to do as much with casting first before surgery is needed.

In other news, Elias smiled for the first time Saturday night. And every day since he's been doing it more and more. Every time we grab the video camera to film it though, he wont do it! I swear, its like babys just know when to turn it on and off.

Thanksgiving Break

We had a wonderful Thanksgiving break with family and friends! Valerie and Steve's wedding was absolutely beautiful, and she was just stunning. My family watched Elias while we were at the wedding, so it was nice to have some grown-up time with friends for the first time since he was born, and not have to worry about him at all.

After the wedding, our friends came over to meet Elias. 



Travis, Paige, and Elias



Travis was a natural ;)

 

Jaime and Elias

They look good with a baby, right?!



Snugglin with Dana and Brady



This was the first time that our family (besides my mom, Taryn, Mom-Mom, Beth, and Andrew) met Elias too. Elias was a real trooper considering how much he was passed around over the week.



Aunt B loved dancing with me in the kitchen :)



Meeting his great-grandma (Gigi)



Cousin Zion didn't know what to think of me



He had lots of fun with his Pap-Pap when he babysat

We also went to Alison and Brent Miller's wedding in Harrisburg. Another beautiful wedding. The ceremony was at the capital in the rotunda. Tons of fun!



 

I took Elias in for a new cast today. The doctor said that this last cast worked really well, and that he got much more movement in it than he did last week. So he thinks that at this rate he could possibly only need 2-3 more casts. I wouldnt be surprised if he ends up needing more, but if 2-3 works, then we'll take it! Its pretty exciting to think theres a chance the casts could be off by Christmas though :)

Early Intervention comes tomorrow, and we'll begin his physical therapy. He's getting really good at holding his head up. He doesn't have it quite yet, but in the next couple weeks we'll be there. He also is on the verge of smiling...we cant wait for that :)