Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, October 31, 2010

21 Things about Angela

1. We did not know prenatally that Angela had DS. It was a surprise to the doctors, and mostly to us. But the week before she was born, I knew something was up, and so when I was told the news I wasn't surprised at all.

2. Angela was born at 4 lbs 4 oz. Since that day her nickname has been "Peanut". All of her brothers, her dad and I still call her that.

3. Angela loves stripes. That's all she wants to wear is stripes, and the wider the stripes the better. Rugby type shirts are her favorite.

4. Angela's favorite area to shop is the boy department of any store. See number 3 for the reason!

5. Angela's favorite show on TV is "The Middle" followed VERY closely by "Modern Family".

6. Angela is a better dog trainer than most adults. It has never occurred to her that a dog might not listen to her, and because she expects a response from them, and she has no reservations and is all business, they do respond! That is exactly how I wish dog owners in my classes would be with their own dogs. (this can also get her into trouble with a dog she doesn't know!)

7. Angela's most favorite person in the world is her "Big Guy Dean". If we go somewhere, she always introduces us as, "This is my mom (like she HAS to say that part) and This is my big guy Dean!" (and fawns all over him! ROFL)

8. Angela is a "dual diagnosis" kid. She has Down syndrome/Traumatic Brain Injury. Sometime right after she was born she suffered a stroke or two, which in Minnesota counts under the TBI category. (in other states only an external blow to the head counts as a TBI) Then in December 2009 she was also diagnosed with complex partial seizures, which are also considered under the TBI label.

9. Up until a year ago, Angela was an extremely aggressive child. I mean, extremely agressive! She could never be around small children or animals without direct 1:1 supervision. Because of that we couldn't even consider adopting. I always questioned if it was truly a behavioral disorder or some type of seizure because the behavior was unprovoked. Finally one day her neurologist saw an episode in his office and said, "Is THAT what you've been seeing? Because THAT is a seizure!" She was started on a specific kind of seizure drug that day, and since then she is a completely different kid! She has had 3 or 4 breakthrough seizures since then, but they are short. Because they don't look like a seizure, we're like, "Where the heck did that mood come from? Oh yeah! Bet that was a seizure!" We get her medication levels checked and sure enough, she needs a dosage adjustment.

10. A year ago Angela told me, "Mom, I have bad news. I'm moving far away and you're not coming." I think it's safe to say she will NOT be living with me forever!

11. Angela has had 22 major surgeries, and at least that many minor procedures. Often with several things done at once. (like ear tubes, tear duct cleaning and tooth extractions all at once.) We call these "tune ups"! LOL Most of her major surgeries have been GI related.

12. When I shattered my wrist a couple years ago Angela was in 7th Heaven! She got to play nurse FOR REAL! As soon as my doctor made me stop wearing my brace, Angela claimed if for herself and wore it for several weeks.

13. When Angela started preschool at 3 years old, she was only able to say a few words, but she signed more than 600 signs. She had more, but that's where we stopped counting. I was a Sign Language Interpreter for almost 25 years, so the signs were all in my head and I didn't have to look anything up. I was able to sign naturally with her.

14. Angela has Cricopharyngeal Achalasia. It is very rare, and is unrelated to Down syndrome. This is a progressive disease, and extremely rare in children. In December 2009 she had surgery in Boston to improve her ability to swallow but it didn't work. We were supposed to go back to discuss much more invasive thoracic surgery. We haven't gone back. Angela has horrible problems with wound healing and I just can't stand the thought of putting her through this horrible surgery. It will be FAR WORSE than any surgery she's ever been through. Right now she's stable, so we're just waiting. I'm trusting God to tell me when it's time to start looking at this again.

15. Two years ago we switched from windows operating systems to Macs at home. Angela taught Dean and I how to work our computers. LOL She's still showing me how to get to some things.

16. Angela is willing to try every sport there is to try. Really, she's willing to try anything, since she has no fear.

17. Angela has 4 older brothers. Rob 24, Noah 23, Tyler will be 22 soon, and Bryon 21. She also has a step brother Aaron 21. Is it any wonder she's not a "girlie girl"? LOL

18. Angela has the best sense of humor ever. Seriously, this kid can work a crowd! Dean and I are pretty immune to it but some people are pretty entertained by her. (I don't think her brothers are. LOL)

19. Angela hates breakfast food. When she gets up in the morning she asks for lunch because she hates all typical breakfast foods and would rather have a sandwich or lunch type foods. I have to get pretty creative to get her to eat before school. (She is my polar opposite. I prefer breakfast food over anything else. LOL)

20. Angela loves to watch Dean league bowl every Thursday night. The waitress there knows exactly what to bring her for a drink and brings it for her before Angela even makes it to the table. Angela knows every person on the league, I think. (and there are a lot!) She cheers for every bowler and gives them high-five's for all their strikes and spares.

21. Angela loves unconditionally like the rest of us should. She forgives quickly like the rest of us should. She's never afraid to try new things, like the rest of us should do. Angela is the most amazing person I know.

5 comments:

Tiffany said...

Seizures? How did they know? What kind of aggression? My Elise has some insane impulses...and now I am curious...

Please?

underwater9800 at gmail.com

Tiffany said...

I have some big hopes for November and was hoping that perhaps I could talk you and Angela into being guest bloggers?

http://superdownsy.blogspot.com/2010/11/novembers-plani-want-you.html

Please let me know if you would be willing!!

underwater9800 @gmail dot com

Melissa M said...

I LOVED getting to know Angela better through your list!

Milena said...

Isn't a sandwich breakfast food in the US? In that case Angela would like Swedish breakfast!

aprilanecdotes said...

You and Angela have been through so much. Thank you for sharing the journey. susan