Sweet Analise Rose's Journey with Arthrogryposis, Amyoplasia type: Analise returns to Dr. Hurley today-A message from Erik

From Erik:

"Analise had a pretty busy 9th week. Along with that little trip to Philadelphia, she went to her first wedding on Friday. Her auntie Valerie married Analise's new uncle, Robert. Congratulations!! She had fun on the dance floor with Valerie, but only for one song because we didn't want her getting too crazy out there. While we were at the wedding, a few people that we have never met came up to us and told us about how they were following Analise's progress through the blog and thinking about her. They had found out through people posting on Facebook. It is truly amazing to know how much support Analise has out there.

On Saturday Analise went to a barbecue with Dawn's side of the family while I took the kids to their soccer games. Sometimes, I think I should just put a "taxi" sign on the top of my car, at least then I could get some money for all of that driving around I do. These kids better appreciate it some day or we'll make them drive us to all of our doctor's appointments when we're older. :)

On Sunday, Kassandra was lucky enough to have a halftime scrimmage on the LA Galaxy soccer field at the Home Depot Center and we were given tickets so we could all go. Dawn, Kaley, Kyle, Katrina (my sister), Dan (my cousin), and I got to watch her play. And no, I'm sorry, there are no David Beckham pictures. Abuelita, Grandpa Richard, and Abuela got to babysit Analise for the second time. This was Dawn's second outing and she decided she better start easing her way out of the house a little bit at a time, so when the time comes to go back to work, hopefully it won't be so hard. She's aiming for the beginning of December or the start of January.

Today Analise is 10 weeks old. WOW! She was so excited today. Dawn said she wouldn't stop smiling. She celebrated by getting new casts with Dr. Hurley. Dawn had to go to the appointment alone because I was not able to take off work. But at the last minute, my incredible principal allowed me to leave a little bit before my lunch and another teacher offered to watch my class. Thank you so much Sandra and Nancy!!

I drove all the way to the appointment to surprise Dawn and Analise, and when I got there, they were just finishing up. Next time I will have to drive 90 mph:) It was good though because I still got to talk with Dr. Hurley. Dawn said that Analise was so calm with Tony again, and even fell asleep when they put on the new casts. Yeah, back to the "pretty" casts. Those other 900 lb. ugly plaster casts were a pain. And they were actually rubbing on her feet a little bit and causing irritation, so it was good that they came off.

So here comes the dilemma. Back in Philly, Dr. van Bosse, the lower extremity specialist, suggested clipping her outside hamstring tendons so that her knees would release more to the inside.

What's happening is Analise has "knee knockers," when her legs are straight, the front of her knees are actually out to the side. It looks like her legs are straight, but when you rotate the front of the knee to the front, the bottom of her legs go out. When she extends her knee, the outer hamstring tendon is very tight, causing the tibia, fibula and foot to go outward, hence "knee knockers."

The idea from Dr. van Bosse in Philly was to maybe put Analise under anesthesia and surgically clip both the Achilles tendon (tenotomy) and hamstring tendons at the same time. Dr. Hurley didn't really agree with Dr. van Bosse's thoughts, but said she would have to see his notes. She believes the Achilles tenotomy should be done next week. That procedure is done right there in the office and does not require putting Analise under any anesthesia. Dr. Hurley doesn't feel like the hamstrings are tight and feels that we should wait until she gets closer to walking, before performing any surgeries. She also doesn't want to put Analise under anesthesia if she doesn't have to due to all of the complications, especially with a newborn with arthrogryposis. It seems like her thoughts are more along the thoughts of Dr. Zlotolow, the upper extremity specialist from Philly. "Wait, and let Analise show us what she needs." Although, Dr. Zlotolow also said the treatment plan for the lower extremities is typically addressed before the treatment plan for the upper extremities.

When I explained fully what Dr. van Bosse wanted to do, Dr. Hurley was a little more open to seeing what he had to say, but she still wanted to talk to him and suggested to wait. It puts us in a very hard position.

Do we get the surgery with the specialist from Philly, put Analise under anesthesia, and try to correct the problem sooner? or
Do we wait, let Analise show us what she needs, and do the surgery, if she needs it, later down the line? We feel like this decision could affect her lower extremities for the rest of her life.
SO HARD!!!

At this point, we are going to wait for Dr. van Bosse to send his notes and talk with Dr. Hurley. I am going to send him an email to remind him to contact her. When we left last week, he and some of his colleagues were leaving for their annual trip to Puerto Rico to work with arthrogryposis patients down there. He was pretty busy and probably forgot to contact her. More waiting.

And guess what our little porker weighs now? 9 pounds, 2 ounces. That's 10 oz. since last Monday. Maybe Dawn can let her sleep longer rather than waking her up every 3 hours during the night to feed her. Thank you baby, I Love you!! That formula and Mommy's diligent feeding schedule must be chunking her up!!

A special thanks to Abuelita (my mom) and Rich (my step-dad) for everything you guys did for us in Philadelphia, and well, every day. We love you! And big thanks to everyone else out there. We appreciate everything that everyone is doing for us. If we don't thank you enough, we're sorry, but we are really grateful for our incredible family and friends. We are doing well and it's because of all of you!

Kaley, Kyle, and Kassandra love their little sister so much. The minute they get home, they run to wash their hands and put antiseptic lotion on so they can hold Analise. I think at one point, Kaley didn't put Analise down for 2 hours while she slept. They are helpful with her (but not with anything else around the house :) ) and Analise definitely knows when they are around. And a BIG HAPPY BIRTHDAY SHOUTOUT TO Kassandra. She turns the big 11 tomorrow, October 18!! She also shares a birthday with Analise's great grandpa, Jim Morlock, Happy Birthday!! We love you !!!"