Perkins Playgroup: Sucess!

So yesterday Lightbulb went to the Perkins monday group for the first time. She did great! I thought she wouldn’t do so well with strangers, what with me not being there and all but my grandfather watched her and he said she did great! She played with lots of different toys and had a ball. I got to meet several other parents of kids with different visual imparments and other problems. It was really neat to be able to relax and talk to other adults. I can’t wait for next week!

Results

Not so good. They reccomended thyroid hormone therapy daily and Cortisol injections when she gets sick.

Getting a second opinion on the thryoid.

Website: Blindness For Kids

http://www.virted.org/Blind/BlindKidsMain.html

Cool little website designed to teach non-blind kids about blindness.

Excerpt from the site:
You may wonder how and if you should help the blind. Blind people are like any other people – sometimes they like help and sometimes they like to do it themselves. The best thing is to calmly and politely ask a blind person if they would like help. It is important to listen as, for example, they tell you how to help them cross the road. There are certain ways of doing things that make it easier for a person who is blind which usually a blind person will tell you.
Another important thing to remember is to not try to play with or disturb the guide dog of a blind person. The guide dog is a working dog, helping a blind person get about safely and efficiently. It is important that the dog is not disturbed while doing this important work.
Still another thing is to put items back exactly where the blind person has put them. Blind people depend on organization and knowing where things are.
Finally, the best way you can help a blind person is to remember that he/she is a person just like you with thoughts and feelings. It is important to be sure a blind person is included in the fun as you would want to be.
You have shown by visiting this site that you would be a good friend to a blind person as you have cared enough to learn about blindness.

Posted in ASpecialParent on LJ

You know what I realized today? How bloody awesome my daughter is. How awesome all of our kids are. Seriously, as much as you might think about how behind/difficult/whatever your special needs child is, if you step back for a minute and just watch what they can do, it fills you with such a sence of pride that is overwhelming.
See my daughter is almost a year old and visually impared (legally blind but has some vision, diagnosed with ONH and SOD) but I did a worksheet today applying for SSI about what she could do  and I realized that I had checked off almost everything on the sheet. My blind daughter can do everything normal kids can. It might be harder for her and take her a lot longer, but she is so strong and so smart and best of all so loving. 
Being Lightbulb’s mom is a lot of work. Being any of our kid’s parents is a lot of work. But no matter what ANYONE says, you are doing this with all your heart and that means you are doing an amazing job. Keep up the wonderful work!

More tests need doing

So the blood tests fo the endocrin stuff came back normal, even though the thryoid was a bit low, so we have to get retested. Unfortunatly, no one ever told me that we needed to get those tests done before 9am so that we could get the coratisol tested. So now I have to get my mom to drive me to Waltham in the wee hours of the morning on Monday so she can get more blood taken. Fun.

Birthday Coming Up

Lightbulb is going to be 1 in a month (ish)

moved!

So we are in our new home now! I’ll post some pictures of Lightbulb’s new room soon. It’s all set up I am just so busy trying to get everything else done!

Podcast: InTouch, news for blind people

In Touch: News for Blind People.

This is a pretty cool podcast. It deals with issues that blind people have. It’s intended for adults, but it helps me get an idea of what kind of things Lightbulb is going to encounter in her life.  The most recent one is about Sheltered Workshops, which are factorys that only employ Blind or disabled people. According to the people they interviewd, its nice to work there. cool.

test results

Got her endocrin results back, everything is normal. Which is good news, but it’s odd because she’s almost 11 months old and had no teeth.

Got to make a move to a town that’s right for me!

So, at the end of the month we are moving to southern MA. It’ll suck to be so far from Boston Childrens, but I for one am done my “living with the in-laws” phase of my life.  I’m going to need to find a new peditrition, set up her new Early intervention and Perkins stuff and pack this week. Going to be very busy!