More Injections

Wade had more injections Tuesday which went well. The Doctor was pleased with how his hand looks so far and thought he might not need the third set. We will, however, have to schedule the injections anyway in six weeks and go in (at 6:00 in the morning, no food after midnight) as if he were going to have them. Then the doctor will evaluate after we get in there and hopefully send us back home.

ABC

Wade started with a new speech therapist today. He is eager to begin speaking Big People language.

For a while he was stuck on the letter B; now he loves the K sound. He tries to work it into his conversations as many times as he can. With a bit of a guttural flair, he sounds as if he's speaking German.

Of course, at this point his English is still quite a bit better than his German or French.

He astonished me last night though. He was poking the letters out of his foam alphabet puzzle. I noticed when he came to the letter U that he signed umbrella before he poked it out. Intrigued, I wondered how many of the other letters he could recognize without any visual or verbal prompts from me. As I held up the letters he either said the sound or signed a word that started with the letter for 13 out of the 26 letters of the alphabet. I was so excited I could hardly cook supper.

I give great credit to http://www.starfall.com/. We have been using that for a long time with him and the last few months I've been doing 30 minutes of it per day with him. It's a great online learning to read program with a kindergarten curriculum coming out this fall.

Day Surgery

The Gloved One

The Gloved One ready for Kenalog injections


Coloring out the frustrations of a long wait



At last, ready to go



After waking back up, not feeling so great

Home again, food at last!

The Other Gloved One

Wade has been wearing a Jobst glove to help counteract the scar tissue from his burn, which has thickened on the top of his palm and on his third finger. Today he also had steroid injections done which will help to start breaking up the scar tissue. He will likely have the injections done three times, six weeks apart. He was sedated for the procedure because the injections need to be placed very precisely and are painful.

Huh?

"And a partridge in a bear tree," Christopher sang.

"No, Christopher," said Randall, the official Little Brother Corrector, "it's a partridge in a pantry."

(They must be closely related to the person who once asked my mom, "What in the world is a partridge junipear tree?")

Classic Chris

In the middle of a dark night: "I had a bad dream…but it didn't last long. It was only a meter-millen of a second."

 

On the way to church on a cold evening: "The only thing wrong with suits is that they don't have hoods."

I DID IT!

Wade's only verbal sentence at this point is "I did it" which he says delightedly no matter how incriminating it may be. Here are some of the things he has been doing, for better or for worse.

Who needs cell phones?

You wouldn't believe what this book says about me.



Girls? I want one!

PROGRESS

Wade continues to thrive at his own pace. His accomplishments are full of joy for us as well as for him.






He is now getting therapy two or three days a week. Speech and occupational are every week and physical is every other week at this time.






When Jesse moved away in August, Laurie became his new OT.






Wade is always sociable and unafraid of strangers, but I could tell that he was unsettled during the transition until a routine was established with the new OT.






He can now walk without support up and down the little stairs Nevin built for him.






He is learning to jump, but still locks his knees most of the time because it makes him feel safer that way. But it's very difficult and jarring to jump with locked knees. Try it sometime.






He does a great job with shape sorting and simple wooden puzzles.






He is learning to string beads.






He is trying very hard to learn to take lids off. (Hmmm. Is that a good thing to encourage at this point?)






Another scary thought is that he almost can work doorknobs properly.






His speech is progressing slowly. He voluntarily puts two signs together to make two-word sentences. He signs, "Eat sandwich" and "More cracker".






He is also getting much better at saying different sounds and some recognizable words. Just this week he said very clearly multiple times the words nice, ice, night,and light.






Before this he would sometimes come out with a new perfect word now and then, but not be able to repeat it consistently.






Mostly he loves words beginning with B and if he can't figure it out any other way to say a word, he thinks the word Bap should express it all.






He has had several colds along with croup and a sinus infection this winter. As a result, he learned to blow his nose nicely. (There's always an upside!)






And in October he learned what hot means the hard way when he touched our glass fireplace door and got second degree burns on the palm, fingers, and thumb of his right hand.






I never wanted to have an acquaintance with the burn unit other than to provide meals occasionally. But that's where we got sent for some temporary skin grafting.






His burn has healed nicely, but I am still massaging it with lotion every day to help the skin renew itself without scarring.

Times Square Video

Three months ago I posted about Wade appearing in a video that was shown in Times Square to kick off Down Syndrome Awareness month.


It is now available to view online. Go here and see if you can spot Wade.

Bernadette Resha (and husband)

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At the Conference we attended we were privileged to meet Bernadette Resha & her husband, Josh Putman. They both have Down Syndrome and were celebrating their 1st wedding anniversary..




Their story is interesting and can be found in this article that appeared in the Tennessean.


Bernadette is an accomplished painter and had some of her portfolio available for purchase at the convention.


In addition to being an artist, she is also a violinist, model, public spokesperson, and has appeared on television and in film. In 1994 she was Special Olympic's Athlete of the year both locally and for the State of Tennessee. The Easter Seal Society made Bernadette its 2000 Adult Representative and the same year she started a career as an artist.

Down Syndrome Conference

Last weekend Karen & I attended the "2008 Regional Conference on Down Syndrome and other Disabilities" in Atlanta. Many thanks to the Down Syndrome Association of Atlanta for planning & hosting this event. Thanks also to grandparents and my sister, Karen, for taking care of our 3 boys to make it possible for us to go.

We had a great time and got to sit in on a lot of interesting and educational presentations & workshops.

The first day there were several presentations by Dr. Brian G Skotko, co-author of Common Threads.

Dr. Skotko has a sister with Down Syndrome. He is a resident physician at Children's Hospital Boston and Boston Medical Center. He has dedicated his professional energies toward children with cognitive and development disabilities.

Coincidentally, about a week before this conference we received some survey forms in the mail from Dr. Skotko asking us to participate in a research study he is conducting on Down Syndrome families. He is especially interested in how it affects other siblings in the family. Randall even got to fill out his own survey.

“What the Other Children Are Thinking” is a research paper Dr. Skotko co-wrote that appeared in the American Journal of Medical Genetics.
In the coming days I will try to do some more posts telling of some of the other people we got to meet.