31 for 21 Day 31!!!

I did it again, met the challenge of 31 for 21 to raise Down syndrome awareness!!! Several people have said that Down Syndrome Awareness Month needs to be changed to March (3/21 World Down Syndrome Day etc.), I think that's an excellent idea. We are totally overshadowed by Breast Cancer Awareness. Don't get me wrong, I have a vested interest in that too. I am a woman and my mom had breast cancer. I just wish we could get NFL players to sport a little yellow and blue along with their pink!!

Just cute pix of Addy trying on her brother's underwear and perched at her favorite spot, watching the boys and the neighborhood kids play in the backyard. I bet next year she'll be out running with them!

Trick or Treat!

Addy like being Abby Cadabby far less than Zoe. She didn't think she could move in her costume, it was like a straightjacket in her mind!! She wasn't too keen about Cooper's Master Chief mask either.

Jake was okay, the fake bruises didn't bother her, must be because he's always banged up!


We just got back from our rounds. We are all pooped and ready to crash. We'll go to the local churches trunk or treats tomorrow. Maybe she'll like her costume better then!

31 for 21 Day 30

Today has been busy and fun. I had a surprise birthday party for Scott's 40th birthday today!! His friend, Paul, was a HUGE help for me! He arranged the whole thing! Scott thought he was going to a Geocaching event, but it was actually a surprise for his bday (it's on Nov. 2nd) !! Scott is completely addicted to geocaching. He has a streak going of 200+ days in a row of finding a cache. That's the most in Missouri! My friend Annie made the most amazing cake for him too. She has a little man sporting a little something extra too. The name of her new business is: twentyonecakes.com! It was quite a hit! Scott didn't have a clue that we would be there until he saw my mom wondering around the parking lot looking lost (shocking). He figured something was up then. Tons of his fellow geocachers were there, I think he had a good time! Happy Birthday Honey!

31 for 21 Day 29

I really thought I was going to get through this 31 for 21 challenge without having to say anything negative about people's view of Down syndrome. Well after school today we had to run to Wal Mart for a couple of things. While we were waiting in the check out line there was a table set up for people to get flu shots. There was a nurse (I'm assuming she was a nurse) that was at the table and she could not stop staring at Addy. It really ticked me off because it was a "isn't that a shame" type stare. Not the usual "oh my gosh that's the cutest kid I've ever seen" type stare. I don't understand the staring like that. I find myself staring at children with special needs because they fascinate me and I would love to go and talk and play with them. Not because I feel sorry for them or their families. I just don't get it.

(hard to tell but she is waving here!)

Not five minutes later a couple got behind us in line. I have mentioned before that Addy is a male magnet and she was just grinning and waving at the man behind us. She will wave "hi" to someone about 50 billion times. Fortunately most people oblige her and keep telling her "hi". We are trying to teach her "just once" but it's not sinking in yet. The man was so nice and kept telling her "Hi" and I told him thanks for saying hi because she loves to say it over and over. He told me he it was fine, he was just so happy that she said "hi" to him and not his wife. You know what that %$#&^ said???? She said, "Yeah, she just said hi to you because she is one of those special kids and doesn't know any better." WHAT??? I was hacked, so glad that we were loading our groceries then I wanted to get away. I just looked at her and said "Oh she knows what she's doing, she knows friendly accepting people when she sees them." It's all I could come up with at the time. UGH!!! How can you not say hi to someone that is so enthusiastic about it??

31 for 21 Day 28! Braids and Partytime!

Last night Addy's hair was driving her nuts after her bath. She absolutely HATES it when it gets in her face so I usually put it up in a ponytail. I try not to do it when it's wet since it leaves a crease. So I french braided it since she was dressing up for her Halloween party at school today anyway. I think it looked so cute! We'll definitely be braiding more often!!!

I went ahead and took her up to school just for her Fall Party today. She was ballerina Zoe from Sesame Street. It was a little snug, fortunately we have Abby Cadabby for Halloween night! She actually left the hat on, I couldn't believe it! I never give her enough credit, she had fun at her party! She enjoyed making her pumpkin craft and LOVED the candy corn beanbag toss! It was so cute, she's such a problem solver. She realized that she was too far away to make it through the hole so she just crawled right up and chucked it in! Too fun! I got pix but she is blurry, my camera was focusing on the para helping so you can't really see Addy well :( I didn't notice it while I was taking them. I'm glad I ended up taking her, it was worth it!

Tonight we are heading to a freezing football game. I'm not looking forward to freezing but we are really hoping to win. We are playing our former football coaches team! It will be fun to see his family again, we've missed them!

31 for 21 Day 27

Addy had a busy day today! She went to school this morning where she went to the Computer Lab, Library and had OT. I think she had a really good day, she was would up when I got her home! She ended up not taking a nap this afternoon, so naturally she fell asleep on the way to Springfield for feeding therapy. Fortunately a Little catnap was all she needed! She had a great session today, so much better than last week. She was a little more tolerant of some oral-facial massage and even almost willingly put the teether to her mouth with some mashed bananas on it. She wouldn't touch the spoon so we stayed with the teether. She did so well, today I think she is going to really benefit from this therapy!!!


Tonight I had to take a pic of what we deal with daily with out little princess. She thinks it's downright hysterical to pull her shirt up and pull on her Mic-Key button. Drives me nuts but she sure is cute while she's being ornery!

31 for 21 Day 28

Not much going on except for a very busy day but wanted to get my post in!

31 for 21 Day 25

Today is a sad day. I lost my dad to colon cancer 4 years ago today. I HATE CANCER!! I miss you so much Dad!!!

On the DS front, Addy had her 6 month check up with her ophthalmologist this afternoon. Dr. Pierce is so awesome, I am so glad that I took her to him for a second opinion since the ONLY pediatric ophthalmologist in Springfield just kept telling me that Addy was farsighted since she had DS and she would always be farsighted and she would be hard to fit in glasses since she doesn't have a nose bridge. Nice huh?

Anyway, Addy was too darn cute during the evaluation. Naturally, since Dr. Pierce is a man!! His favorite part of the eval was when his assistant was behind him with a stuffed Elmo that was singing the alphabet and Addy was signing the alphabet with him. It was awfully cute!! He was amazed that she could sign the ABCs! She obviously doesn't form all of the letters correctly but she sure tries! Anyhoo, Addy is getting new lenses she is more farsighted than she was in May and needs her script to be doubled!!! Hopefully they will be in next week. He does think that will make another big difference for her since she is so farsighted, even though her current lenses do help, just not enough.

31 for 21 Day 24

As many of you know Addy has had more than her fair share of surgical procedures. Yes, the majority of them have been related to her having Down syndrome. Many of her procedures were done before we got custody of her and I can't remember all that was done, however, I do have her medical reports in a folder, just not going to dig them out right now. The first surgery Addy had once she was with us was her analplasty surgery and ear tubes. Addy was born with an inperforate anus which occurs in 3% of children born with Down syndrome.She did a great during the surgery. Had it done on a Wednesday and was home on Friday. The next surgery was her colostomy closures. That was a major surgery. They had to hook her bowels back up so they would be in working order and close the colostomies. She had two, one for stool and a mucous fistula just over her belly button that collected mucous. Yummy huh? She did great during the surgery, however, she was just about to be discharged and she ended up getting as staph infection in her central line and required more antibiotics. Naturally that led to her first bout with C-Diff which made her brand spanking new working bottom to work overtime, it was awful. She ended up having to stay in PICU an extra ten days :( The next surgery was to have tonsils and adenoids removed. That was an easy surgery, just an overnight stay in the hospital but a horrible recovery. She was horribly cranky for two weeks, it was so sad! The latest one was just another set of tubes last February. She's had multiple hospitalizations due to being ill, however, we are hoping that that is behind us. Just the fact that last spring she had C-Diff and stayed out and has stayed out this round is amazing.
I tried to take pictures of all of her scars but I just couldn't get them to show up. I did get her belly scars from colostomy closures

and her thoracic surgery on her back/shoulder blade

but all of her central line scars really didn't show up, so these are just cute, she's sooo happy after a bath!

31 for 21 Day 23

Today Jake had his last football day of the season. The weather was great, cloudy but not cold and not raining (yet it is now :)). Addy had been fussy all morning, just overall not happy. Very unlike her!!! We went to the game and it was obvious she wanted no part of it, just would whine and even tear up so she and I came home. I was hoping she'd go down for a nap, it was definitely time. However, she just fought it for awhile then finally gave in. Her C-Diff appears to be getting better, she's only had two stools today compared to at least 10 a day for the past week! Her bottom is also looking better. We are caking on the Desitin and using a hair dryer to get her completely dry. We haven't used wipes in months but if we did we would have given those up too! So I thought she was on the mend. Then it hit me just now as I was giving her her 3 o'clock feeding. LACTOBASCILLIS!!! We started her probiotic on Thursday. I've been mixing her dose in her entire feeding so she isn't getting so much at one time. I thought she was doing ok with it since she wasn't puking, that's her first sign of an allergy/intolerance. So I poured out her 7pm feeding and made a new one with no probiotic. We'll see how she does tomorrow without it and see if she feels better. It is so frustrating trying to find something to help her digestive system when she's allergic to all of the things that are used to try to help!!!

On to Jake now! He had fun at his last game, they got to play on the big High School football field, that's pretty cool to the little guys. Doesn't he look so cute in his uniform?? A blackhawk helicopter was there for a tour and entertainment too. It's pretty cool having a member of the INS as your football coach!

31 for 21 Day 22

Addy wanted to watch LC and her drum video about 10 billion times a day so I thought it would be nice for her to have a drum of her own. Her Grandmama usually gives money for a gift and lets us go and get what she wants. This time I just said I'm ordering this drum she's going to love it! I think I was right!

31 for 21, 21 things about Addy

1. Addy absolutely is boy crazy. Completely and totally boy crazy!
2. Addy made up her own sign for Sesame Street, it's quite cute!
3. Addy always wants shoes but pretty much refuses to keep them on!
4. Addy always "sings" along with her favorite songs. It's so cute, she keeps a great melody!
5. Addy has changed so much in a year, she is growing really well and is learning new things all of the time. She weighs 27lbs now!
6. Addy fits the stereotype of children with DS are always happy. She pretty much is all of the time unless you don't do what she wants immediately. Not in a minute, immediately. She will smile and laugh and demand that you wait on her every whim. But she'll be happy with your service if you comply immediately.
7. Addy loves baths dearly but wants nothing to do with bath toys.
8. Addy always signs "eat" or "drink" when those around her say it or are doing it, however, she still wants little to no participation.
9. Addy has a sign vocabulary of at least 200 words. We lost count after that.
10. Addy has had 14 surgical procedures.
11. Addy thinks her brother, Jake, hung the moon. We're working on that warped sense of reality.
12. Addy is pretty reserved and laid back around other kids. We're hoping preschool will help with that. That is if she's ever allowed to go back after the C-Diff!
13. Addy is a pampered, spoiled, precious little princess, however, we really think she wants to be a shotput and discus thrower.
14. Addy does not like baby dolls or stuffed animals at all. I'm hoping to work through this, I'd hate for her to ever hold an actual baby and chuck it across the room.
15. Addy loves music, especially Rascal Flatts, Taylor Swift, Jack Hartmann, Katy Perry and Lady Gaga.
16. Addy has the cutest giggle ever. Some day when her mother can upload video without losing all of the audio you'll get to enjoy it too.
17. Addy only likes black dogs, white ones freak her out.
18. Addy speaks in complete sentence in a language that only she understands.
19. Addy finally wears 2T clothing. Pants are perfect if they are an 18 months, that's why I love buying separates!
20. Addy has extremely sensitive skin, I'm really hoping we get through this winter with no eczema outbreaks!
21. Finally, Addy is light of our family and we can't imagine life without her!

31 for 21 Day 20

The only thing making her happy right now, gluing herself to Elmo :( We went to feeding therapy and she was totally uncooperative. Poor thing, she just feels totally yucky. Hopefully she'll be feeling a little better next week and show some more interest :(

31 for 21 Day 19

I wish I had some adorable pix of Addy playing in her bday cake and full of smiles. However, Addy does not feel good, she feels like poop. Literally. Poop. Her poor bottom is so raw and is bleeding, it's awful. We went to her pediatrician and he changed her to Vancomycin and we are going to try a probiotic again. I am so hoping that she can tolerate it. It does have Lactobacillus acidophilus in it which worries me due to her allergy but it is "milk free". I'm not going to start it until Thursday because she should have her feeding therapy tomorrow and I don't want a puking reaction to delay it another week! We are also supposed to more than liberally apply her diaper ointment and use a hair dryer to try to clear her bottom up. It's so sad, she is so sore, it breaks my heart, poor thing.

So you can all have an Addy fix (because seriously, who doesn't need one of those???) here she is opening. No throwing her presents! Man I love this girl!

31 for 21 Day 18, my 500th Post for Addy's Birthday!

Make video montages at www.OneTrueMedia.com

31 for 21 Day 17

I don't think I mentioned that Addy's feeding therapy got canceled last week. The therapist had a sick child so we didn't get to go. I'm hoping the doctor will let her go this week. She is really showing an interest in food! What little girl doesn't like chocolate chip cookies???

(the Gene Simmons tongue!)

31 for 21 Day 16

(I told Addy to say "cheese", she smiled and signed "cheese"! check out her toes, how cute are they?)

This child of mine amazes me. She has this horrible infection and she hasn't complained a bit. She is having horrible gas, by the sounds of it has got to be painful. Every once in awhile she will whine a bit after she passes gas but nothing major. You can feel her tummy rumble and constrict with gas and she just tolerates it. I do not know why she has this again. She hasn't been on antibiotics recently and hasn't been in the hospital which are common culprits. Since it's a weekend obviously we have to wait to talk to her doc until Monday. The first course of treatment is Flagyl. In the spring when she had C-diff she had two rounds of Flagyl with no improvement so she had to have Vancomycin. That did kick it but it's a pretty strong antibiotic. I hate that for her. We've also been unable to find a probiotic that she isn't allergic to. I wish we could I think that would really help her tummy issues. Flagyl is started and she will get 3/4 does in today. We usually don't see a lot of improvement in her stools right away so she's going to have a raw little bottom. It does help that she is potty training and goes in the potty often, but she still gets irritated. Hopefully we will stay hydrated and avoid a hospital stay, we did last time so praying hard here! Addy's birthday is Monday and she won't be able to go to school to celebrate with her friends :( maybe by Wednesday she will be cleared to go, guess we'll just wait and see.

Fall Break

Yes, the girl is home from college for four days!!

The Verdict

Addy has C-Diff. Poop.

31 for 21 Day 15

Addy is pooping snot. Well, probably not snot but definitely mucous. Heading to urgent care later per doctor's request, will keep you informed if we find anything out!

31 for 21 Day 14

I LOVE sharing these pix today!!! On Tuesday Addy and I went to Springfield for her Inspiration Through (formerly Littlest Heroes) Art photo shoot. Kara took such amazing shots! Here's just a preview!! Check out her site, her work is gorgeous!!!