Sweet Analise Rose's Journey with Arthrogryposis, Amyoplasia type: Surgery scheduled for April 4, 2012-

From Erik and Dawn:

"It's only been a couple of weeks since we've written anything on this blog, but every day that passes makes us feel like we are forgetting to do something. I guess, in a way, this blog helps us too... it allows us to tell Analise's story without having to retell it every day to various friends and family members ...it lets us vent our frustrations... and it lets us rejoice in Analise's accomplishments with the "world."

I remember in school, I HATED writing in journals and not in a million years did I think I would be a blogger. But it's amazing what you do for your kids.

This blog is not only a blog for everyone in Analise's life, but it is a blog for her! She will be able to read (we will make books each year for her and us to look back on) everything that has gone on in her life with AMC (Arthrogryposis Multiplex Congenita), amyoplasia.

We love you Analise and hopefully someday you can continue this blog on your own with your own thoughts and accounts of your life with this condition.

My Daddy...

and Mommy love me soooo much!!!

Analise is doing great. She is really playing with her voice now. Sometimes it even sounds like she is singing to us. She is throwing up a lot less lately, although we still have to be very careful with moving or bending her after she has eaten.

Because Analise is unable to bring her hands to her mouth to provide the necessary baby oral stimulation, she is doing so by using her tongue. Here are a couple of videos that illustrate how resourceful Analise is already becoming!!

Analise laughs on a regular basis now and every time I walk into the room, she smiles her little crooked smile and I melt.

Analise is doing great with her grandma Annette and Auntie Monika during the week. She still isn't sleeping through the night yet and Dawn and I are very tired each morning.

Dawn is especially tired since she has to wake up at 5am every morning to get ready and then take Analise to her grandma Annette's or Auntie Monika's house and go to work, which is about a 1 1/2 hour drive each way from our house. But it is worth every minute of it to know that Analise will be well taken care of and loved so much by her grandma and her auntie!!!

Tummy time with Grandma Annette

Analise with Abuela and Auntie Monika...Analise does not look very happy today because she is sick...just diagnosed with croup!!

Dawn would love to do a shared contract at her school so she could stay home with Analise more, but financially, it would be very difficult right now. Hopefully we can work out something soon.

Analise is starting to sit up for long periods of time by herself. We are working on this so she can somewhat stay on course with normal baby development. Her stomach, back, and neck muscles are still not strong enough yet, but they will be!!

Look at me...I am almost sitting up by myself!!!

Analise is still not moving her arms from the shoulders down, but she is starting to move her arms using her back, shoulder, and chest muscles. She can even manipulate her arms/wrists to take her hands off of the high chair tray.

Analise still loves her baths, especially because she gets to take off her orthopedic shoes!!!

Analise is eating her stage 1 foods much better, and is even getting through some of the vegetables. I make it a point to try everything Analise eats and let me tell you something... I can eat almost anything...the baby food fruit is delicious...but some of those vegetables...whew... no wonder she makes those gagging sounds!! I even tried the formula, yuck!

Analise had an appointment with Dr. Hurley (the Kaiser orthopedic surgoen) last week. She said that Analise's feet looked great and she was happy with the movement of her Achilles tendons, although she thought we should try and stretch them a little further.

Stretching Analise is so hard!!! Not only does she hate it, but it is very difficult to know how much or how little we should stretch. She is finally seeing a PT (physical therapist) and OT (occupational therapist) through CCS (California Children's Services) 2 times a week.

They only offered us therapy for Analise once a week, but we INSISTED on twice a week...AND WE GOT IT!!! We only will receive their services for about 6 months out of the year, due to state budget restraints. Their goal is to teach us what to do and eventually have us do most of the therapy on our own.

We also scheduled Analise's surgery with Dr. van Bosse at the Philadelphia Shriner's Hospital for April 4 (preop appointment will be on 4/2) for the hamstring tenotomy. Another difficult decision!!!

Surgery on babies is not fun, and we are not looking forward to it, but we are looking forward to a positive outcome.

This week we have been watching many videos on YouTube under the heading "arthrogryposis." If you have a chance, check some of them out. Relatively speaking, there aren't that many!!

It is amazing to see all of the incredible children with this condition trying to do the things that we take for granted every day...eating with a spoon, bringing food to their mouth, brushing their teeth, playing with toys, standing up, and probably the most important to us... walking.

We hope the surgery will give Analise the chance to walk, and hopefully without any special walkers or crutches.

Watching these videos, not only brought tears to our eyes, but they also gave us a glimpse into the possible future of Analise and her journey with AMC.

We can't wait to post Analise's videos of WHEN she reaches all these important milestones..."