A week long rollercoaster ride

This week was the second week for me at my new job, it was also the week I found out that my new insurance (who is also Dallas's company's insurance provider) does not cover therapy for developmental delays or sensory integration therapy, both of which Maddy needs. The week started out with lots of stress, tears and guilt for taking this new job that I thought would be better for Madelyn. We make too much money for any financial assistance, but cannot afford to pay without insurance. Early On, which is free therapy provided by the school district, is a great help, but it is not nearly enough for Madelyn at this point.  Luckily, after getting the advice of my parents, and parents on my facebook group for ONH and from my wonderful friend Janna who has a great wealth of knowledge in this area, we have come a solution. While it may not be cheap, it will provide everything Madelyn needs, and that is all that matters.

The week continued on, and Maddy had 3 days of therapy (3 days of PT and 1 of OT). We are still waiting on insurance to approve her feeding therapy, but it is expected to get approved and for Maddy to start in the next week or so.

I can already see a difference in her. This morning I went in to find her in her crib after her nap sitting up (in the proper position with proper posture!) all on her own, for the first time! I can't tell you how happy that makes me. In only two weeks of therapy she has learned to get from laying down to sitting up properly on her own. She is also now feeding her self puffs and pieces of banana using her finger and thumb. She is very close to being able to pull herself up to standing on her own, and is close to trying to crawl as well.

The PT also realized this week that Maddy is hyperextending (or locking) her knees when she is standing and not properly using her muscles. They have recommended braces for her ankles and feet (ankle / foot orthosis) to force her knees from locking so that it forces her to use her muscles instead of relying on locking her knees.

The OT is in the process of getting together information on brushing therapy for Maddy's sensory issues. While we do not have a formal diagnosis, all of the therapists we have seen as well as the neurodevelopmental physician have recognized that Maddy does have some sensory issues. The brushing therapy would help with some of her sensitivies, but is very intensive and has to be done a certain way.

I have started to read a book on sensory processing disorder (SPD) called Sensational Children. We still aren't sure if Maddy has this, but I do recognize some of the things she does in the book, and I thought it might help me to understand why she does certain things and how to help her.

We finish this week on a much more positive note than we started. Maddy will continue to get her therapy! She is improving all the time, and the more questions we ask and reading we do, the better we understand how to help her. Not to mention she is one of the happiest babies I have ever met and never ceases to make me smile.