Steps

Mr Sweetness and Light took his very first steps with two legs! He got to try it out for about 15 to 20 minutes. This first leg is a rough one so changes can be made to suit his uniqueness.  More work will be done on it since it couldn't be adjusted any further for him. Our prosthetist said to expect more adjustments as he learns to walk because his gait and stance will change over time. At his next appointment, the leg will get fine-tuned even more and then he will meet with the physical therapist who will help learn to use it.





I cannot begin to describe the joy I felt watching his first few steps. Since I didn't have any of my children as infants, this is the first 'first step' experience I've had with any of my kids. I wasn't sure whether to make a fuss--after all he is 15 years old and boys that age don't really want that kind of fussing since they're 'grown up now!'

New Page!

Hi everyone! Just wanted to give you a heads up about the newest page here. There can be a lot of hidden costs after you get home with your child as well as the need to find resources you weren't expecting. The newest page is called adaptive resources and will be a work in progress covering all that stuff you'll need after you're home with your bundle of joy! Check back often to see what's new!

Equal isn't always equal

We in the US can shout EOOE! and ADA! all we want. There will still be those who don't embrace this and those discomfited by it and still those who remain ignorant about people with differences. I encounter this with respect to my children--especially Miracle Man. Although, as time has gone by, and he has had more surgeries, that has lessened. Especially after the last surgery where he had rhinoplasty and lip repair.

In my work life, I have to over come ignorance and prejudice on behalf of the people I serve. Sometimes it is with respect to getting volunteer positions to ready someone for real-world work. Other times it is to enable a client to receive the medical care they need. I have encountered this several times over the last few weeks. The most recent was in getting medical help for a very challenged person. The medical professional providing service thought she knew everything about my client's needs because she had a son with similar needs. This person did not see my client as an individual and would not accommodate my client's needs--going against protocols and potentially against ADA requirements. She also dismissed the diagnoses of other medical professionals with a wave of the hand: she knew everything and no one else was qualified to perform the services she did. Other medical professionals had been able to make these accommodations and follow protocols. They were not unreasonable.

Here is an article from USA Today about one family's fight to get medical care for their daughter:

http://www.usatoday.com/story/news/nation/2013/10/05/disabled-transplant-amelia-rivera/2917989/

So much to share today!

I'm not sure where to start!

As far as the journey to bring HH home, I've gotten my fingerprinting done by USCIS and sent all of the docs from the Chinese consulate to our agency. We're now awaiting approval from USCIS which is the last bit of paperwork before our dossier goes to China (DTC). Yay!

I am anxiously awaiting an update on HH. My adoption coordinator says it is very extensive and even includes some of his school work!  Last week, I got new pictures. He has grown so much since the first ones!

Miracle Man had surgery last week to reconstruct his nose and lip. He looks so good! Dr. Kuang is awesome! Very thankful for our team up at Doernbecher!

Anyone like Scentsy? Look for a new fundraiser soon!

Miracle Man surgery switcharoo

For the last couple years we've been working toward a bone graft for Miracle Man's jaw and had planned on that surgery for this summer; Unfortunately, his teeth have to move more and this is taking longer. His team has decided to go ahead with some lip repair and rhinoplasty. The doctors will move part of his nose down toward it's final position but cautioned that it will need to be moved more during the next surgery. So we're looking at surgery toward the end of August. Too bad it will be so close to the start of school! Talk about thrilled! Miracle Man can't wait to look more like his peers! So important at his age. His only concern was whether he would be able to play soccer and happily learned he would be able to start with his team.