Sweet Analise Rose's Journey with Arthrogryposis, Amyoplasia type: Post from Tuesday, October 4 for Days: 54-58 New casts, new allergy??, getting ready for Philly

From Erik and Dawn:

"Well it's been a while since our last post, but really, nothing much has happened.

Analise is still trying to keep her food down. Occasionally she spits up after feeding because she HATES burping. The Zantac seems to be keeping the acid down, but the milk didn't get the same message.

It is also becoming more difficult for Dawn to breastfeed. Analise can't ever seem to get completely comfortable or relaxed because of the casts. I wonder why???? So Dawn is probably going to continue pumping to produce milk and then give her the milk in the bottle because she can relax and drink from the bottle with less fussing. Dawn is also going to try to feed Analise with formula several times during the day to make sure she is eating enough. Any suggestions on formula?

Today was the first day trying formula, Enfamil Premium for Newborns, and within a couple hours, Analise broke out in a rash. Seriously, we wonder if anything will ever go smoothly with her!?!? Because we were a little concerned, we took her to the pediatrician and they said it could be the formula, but they also said the rash could have been caused by the outfit she was wearing. We would have to do another test with the formula in a couple of days. If the rash continues with the formula, we may need to try one that is pre-digested.

We are also going to see the neonatologist on Thursday to answer a couple of questions we still have about eating, weight gain, reflux, and shots.

Analise saw the OT. She showed Dawn some more exercises for her. One of the exercises is to put Analise on an exercise ball on her stomach with her arms up, almost as if she was crawling. She fusses for a little bit, but then sucks away on her pacifier. There isn't any new movement in her arms. We are still waiting, but it WILL happen!!!

Analise was denied at Regional Center but referred to a Low Incidence program at the school district. We have a meeting with several people from the district at our house on October 28. One of the specialists for the program works at my school and told me not to worry, Analise would be taken care of. She also said she would probably be referred back to Regional Center after their evaluation. We are still working on the Medi-Cal waiver. How many paycheck stubs does a program need?!?! CCS (California Children's Services) needs to evaluate her in San Bernardino, and then we should get services through them also.

Abuela, Marti (my mom) and Rich (my stepdad) babysat for the first time on Sunday night. Dawn and I got drunk at Chili's. Not really. . .we each had one beer (Dawn to help produce more breast milk, and me for moral support, come on people!!). It was our first time going out by ourselves and leaving Analise since the hospital. She didn't even know we were gone, she slept the entire 45 minutes. :)

Analise also had her casts changed today. These are her fourth casts in 5 weeks. Luckily, we hunted down Tony (the cast removal expert). I hope he wasn't mad that we came to his house. Just kidding. What a relief, today went so smoothly. Tony secretly used glow in the dark casts too, he didn't want Dr. Hurley to know because she doesn't really believe in different colored casts. Dr. Hurley couldn't believe how strong her legs were (I think the leg workouts with the casts are helping) and how much flexion she had in her knees. She was excited for us for our trip to Philly and hoped all of our questions would be answered. She also reiterated that Shriners can do whatever is necessary to evaluate Analise. We also weighed her, are you ready? Well, keep reading until the end and I'll tell you. Come on, it's me, Erik, you know I have to tease a little.

We leave for Philly this Saturday. We are definitely a little nervous to travel on a plane for 5 hours with a 2 month old. And the amount of stuff we will need to bring, holy cow. When they ask us if we will be checking any luggage, I will just point to the 18 suitcases I am dragging behind me and say, "Yes!" We are also very excited though. We will meet doctors that have seen hundreds of kids with this condition. We will hopefully get some of our questions answered.

But here is what I would like you to do: I know many of you have questions too. Maybe we already know the answers and maybe we don't. We would love to hear your questions though. I will put them all together and ask as many as I can. Then I will post the answers when we get back. So ask your questions as a comment on the blog, or you can email, text, or Facebook us. No question is a bad question and we won't get offended in any way. So ask away. Knowledge is power!

Alright, are you ready for her weight? She was 7 lbs. 8 oz. last week, and today. . . with Dawn doing everything she could to fatten her up. . . Analise weighed 8 lbs. 3 oz!!! That means she gained 11 oz. in 8 days. Yeahhh!!!

Looking forward to your questions!!"

We would also like to ask all of you to keep Erik, Dawn, and Analise in your prayers this weekend and especially on Monday, so that they will have a smooth and safe trip, ask all the questions they need answered, and are able to absolutely maximize their time at Shriners with the arthrogryposis specialists. . . FINALLY!