Sweet Analise Rose's Journey with Arthrogryposis, Amyoplasia type: Post from Monday, September 26: Day 50-New casts, visit with Dr. Hurley

Our Sweet Analise. . .

. . . you are such a blessing!!

From Erik and Dawn:

"Today we had an appointment with Dr. Hurley. Analise's casts were supposed to be changed last week, however since Dr. Hurley was on vacation last week, Analise kept her casts on a little longer than usual. And as usual, it was as nerve racking as it was the last time. We didn't get the veteran Tony to take them off this time, which was a little scary because he was so good. The new tech looked a little nervous, especially with a 7 week old kicking, screaming, and crying the entire time.

Let's just say it was a pretty intense 20 minutes of cast removal. He did a good job, but had to go over it several times with the vibrating saw before it came off. He scratched her 2 times on the right foot, but it wasn't too bad and we were told that it probably would happen at some point because it is so difficult. How many more times do we have to do this?

Lucky it's at a hospital each time because we might have a heart attack!!

We then weighed her without the casts, and are you ready? Drum rrrrrroooooollllllllllllll! Not much weight gain, 7 lbs. 8 oz. When we went to her first pediatrician appt. at a little over 3 weeks old, she weighed 7 lbs. 1.8 oz. We are calling the neonatologist and the pediatrician tomorrow to see what we should do. She eats every 2-3 hours and around 3 ounces each time. We are thinking we might have to supplement with formula.

Dr. Hurley said her feet continue to look great and that she was amazed how strong her legs were. She said her knees were very flexible. Each time she puts a new cast, she turns her feet out even more. Eventually, she will cut the Achilles tendon to allow that tendon to stretch so her ankle can move more freely.

Dr. Hurley also told us to put her on her stomach with her arms in an upward position to help stretch her upper body muscles and her neck. She put Analise on her stomach, and surprisingly, she did very well with hardly any crying.

We had a million questions again and here are some of the answers:

Is it alright for Analise to go on the plane to Philadelphia?

It's no problem and the casts are fine.

When we are in Philadelphia, is there anything the doctors can or can't do with Analise?

The doctors can change the casts, put new ones, whatever they need to do.

Can we give him your email/phone number so the two of you can collaborate?

Sure, he can email me through POSNA.

I asked her what she meant about not using ultrasounds because they did one for her hips and that was ok?

Never use ultrasound therapy for the muscles, this can interfere with the growth.

Will they do ultrasounds to see what muscles are there?

You know which muscles are there by movement. If she brings her forearm to her mouth, she has biceps. If she can make her arms straight from a bent position, she has triceps.

Is Analise going to need muscle transfers in the future?

We will have to wait and see. Nothing will happen now or anytime soon. If there is a muscle transfer, they take it from other working muscles. Therefore, they take a good muscle and use it somewhere else. For example, if the triceps are good, they may take that and move it to the biceps, but then she loses triceps motion. However, that may be beneficial on one arm, for feeding purposes where the bicep is needed.

I asked a few other questions, but the bottom line for many of the questions is "we just don't know!" It is a big waiting game and every kid is different.

We don't know if muscles are there, if nerves are there or if more will grow, if there is are problems with the connections from the spine. We just don't know.

Maybe in Philadelphia, we may learn a few more answers, but for the most part, we will always be left with many questions.

She did mention, in a round about sort of way, that she did do some research and now knew who we were going to see. She said she hoped we would get some more answers from someone who maybe had more current research.

The biggest question we had, and probably the same question that many of you have is, do you think her arms will move?

Her answer, and she said we probably don't want to hear this, but she will probably have very limited movement of her arms. We just don't know though. She said our hope is that she has enough movement in her arms to feed herself and clean herself in the bathroom. She said she actually had good flexion in her elbows, which was a good sign, but only time, therapy, and possible surgeries would let us know how much movement she would have.

So, as we drove home from the hospital, Dawn and I discussed the appointment as we always do. We said, as different and difficult as this condition is for everyone to accept, it is weird how it now seems very normal for us. We don't know what the future holds for Analise. We don't know if she will be a completely independent girl, teenager, and woman as she gets older? But that is our hope and we do know that we will NEVER stop looking out for her best interests. We will continue to do everything in our power to help her limbs function properly. We will massage, rub, introduce her to different textures, and stretch her muscles FOREVER. We hope that someday she can hold a bottle, feed herself, grab a ball, pull our hair, pull herself up in her crib, open doors, and do every other little thing that babies and toddlers do. And as I have said from day 1, Analise is going to be that rare case, where doctors from all around will wonder why she was so successful. Analise is our precious baby and we will never stop fighting for her. We love you Analise!! XOXO"

And WE (everyone who knows and loves Analise,
Erik, Dawn, Kaley, Kyle, & Kassandra)

want you to know that

WE will be here for ALL OF YOU,

for WHATEVER you need...

and our prayers will also continue...
FOREVER !!!!