31 for 21 - What I look forward to...

When Connor was born I had no idea what to expect for the future. No one can ever really know what the future holds for any child. However, there are many things that I look forward to. I look forward to Connor going to school and making friends. I look forward to him going on playdates and attending Birthday Parties. I look forward to him learning how to read and write and play sports and anything else he may desire to learn. I look forward to Connor going to high school and possibly learning how to drive (although that is a scary one considering how he rides around on his fire truck now!) I look forward to Connor attending college and finding a great job. I look forward to him falling in love and the possibility of him getting married someday. These are the same dreams that I have for Makayla as well as our new baby. Just because Connor has Down Syndrome does not mean that my dreams change for him. He is my little boy and I hope that he gets everything he ever hopes for. I used to be worried that Connor would live at home forever, but honestly now I kind of selfishly hope he does. Of course I want him to go out on his own and experience life, but at the same time I am not sure I will ever be ready for him to leave us. We have so much fun together and I look forward to all the fun experiences ahead!



 

 

31 for 21 - Reading

One of Connor's favorite times of day is storytime! He will not take a nap or go to bed at night without signing "book" and then "more book please" until we have read at least 3. He will also spontaneously request to read stories throughout the day as well. Anytime we are upstairs he will go over to any one of the 3 bookcases and take books off to read. He points to familiar objects in the books when asked, but really just loves to listen to the story and turn the pages. He is starting to have favorite's and will request specific books by signing "train book please" for example. If I choose one that he is not in the mood for he will shake his head no until I get it right!

Signing "Book"

Snuck into Makayla's room to attack her bookcase!

A recent favorite (thomas the train)

Daddy and Connor reading a bedtime story

31 for 21 - York Beach 2012

Every summer we spend a few days at York Beach in Maine. My aunt and uncle have a great house within walking distance from the beach and let us use it for a few days during the week. Connor has always loved the beach, but this year he had so much fun digging in the sand with his trucks and shoveling sand into buckets to build sand castles. He was not a HUGE fan of the cold water, but did enjoy spending a few minutes splashing around. The cold water encouraged him to stand instead of sitting which was nice! The girls always have a great time at the beach and just hanging out at the house. Jeff and my brother, Mike joke that the only reason we go is to take pictures and sometimes the kids just don't want to cooperate! We got some really funny faces this year.

About to throw wet sand over Connor's head

Bathing Beauty

Sand goatee

Huge fake smiles from Madi and Emma =)

And another from Makayla

31 for 21 - Feeding Therapy

Yesterday Connor had feeding therapy along with a visit from a Nutritionist from Special Medical Services in NH. They come to the house every other month. The feeding therapist shows me different oral motor therapy exercises to work on with Connor to help strengthen his jaw muscles. Our ultimate goal is to one day (hopefully in the near future) have him be able to swallow liquid that is not thickened. The Nutritionist comes and calculates how many calories Connor is getting and makes sure he is receieving the correct amount of all necessary vitamins. She also weighs him and checks his height to calculate his BMI and make sure that he is growing at a proper rate.

My little boy weighs 29.6 lbs. I remember the first few months when we were doing everything possible to help Connor get to 10 lbs. We were adding high calorie formula to pumped breast milk along with corn oil to fatten him up. And now he is just so big and has no problem gaining weight!

The feeding therapist first did some oral motor activities with Connor to wake up the muscles in his mouth. He blew into the harmonica type horn 25 times and was so proud of himself for each and every sound! He did some jaw strengthening with a bite block (this is a red stick that he bites down on each side of his mouth and then in the front.) He does fantastic with this one. She also massaged his cheeks and did some tongue lateralization activities with a nuk brush. Connor is currently only allowed liquids that are thickened to nectar consistency which means we have to add a gel thickener to all of his liquids. After doing the oral motor exercises we allowed Connor to try syrup consistency which is halfway between thin liquids and nectar consistency. He did great for the first 8-10 sips, but then as he started to drink a little faster he definitely aspirated on it as we heard him get very junky. That is sad, and we will not do another swallow study for at least 6 months because there is no reason to expose him to the x-ray radiation when we know that he will aspirate, but he is making amazing progress so we are very proud of him! We still hope that he will outgrow it someday and are doing everything we can to help him drink safely in the meantime.

Next, Connor was able to show off his self feeding skills eating blackberries out of a bowl with a fork and then got to enjoy his favorite snack...an oreo. Connor LOVES to eat and is so proud that he can now feed himself most of his meals.

31 for 21 - Communication

Connor does not have any spoken words yet, but he is trying very hard. He is picking up new sounds and has a few word approximations. He has been touching his lips with his fingers trying to make the p and b sounds as he is learning his touch cues during speech therapy. Still refuses to say mama, but I know we will get there! Even though he does not speak, Connor is very good at communicating with us. He has lots of signs and gestures, and tells us exactly what he wants. I do worry that others will not understand what he is trying to say, but for now he is doing awesome. He has also been using a communication board for the past few months during speech therapy sessions and when playing with us. He uses pictures to make chooses for toys, food, etc. He is able to point and say "I want Mr. Potato head," etc. He definitely prefers signing at this point but will use a combination of both. He is now able to combine 4 signs to make a sentence as well.

Making Choice

Point to I want bubbles

 

Placing toy choice in ALL DONE box

Below is a list of Connor's current signs. These are most of them, but he learns new ones everyday so I know I probably forgot a few!

1.       More

2.       All Done

3.       Eat

4.       Hungry

5.       Milk

6.       Apple(sauce)

7.       Cheese

8.       Cookie

9.       Cake

10.   Muffin

11.   Banana

12.   Orange

13.   Book

14.   Music

15.   Bath

16.   Wash hands

17.   Cleanup

18.   Brush

19.   Mickey Mouse

20.   Play

21.   Car

22.   Train

23.   Blocks

24.   Baby

25.   Bubbles

26.   Up

27.   Down

28.   Go

29.   Open

30.   Close

31.   Sleep

32.   Shirt

33.   Socks

34.   Shoes

35.   Yes

36.   No

37.   Help

38.   Ball

39.   Mom

40.   Dad

41.   Grammy (Mem)

42.   Peppere (Pa)

43.   Quiet (Shh)

44.   Thank you

45.   Please

46.   Your welcome

47.   Sorry

48.   I

49.   Want

50.   Love

51.   You

52.   Kiss

53.   Time

54.   My Turn

55.   Cry

56.   Outside

57.   Hat

58.   Walk

59.   Hair

60.   Cat

61.   Red

62.   Blue

63.   Green

64.   Yellow

65.   Dog

66.   Cow

67.   Duck

68.   Bird

69.   Pig

70.   Horse

71.   Sheep

Gestures or body parts (will point on command)

72.   Eyes

73.   Ears

74.   Mouth

75.   Teeth

76.   Feet

77.   Belly

78.   Head

79.   Nose

80.   Hands

81.   Fingers

82.   Toes

83.   Arms

84.   Legs

85.   Elbows

86.   Knee

 

 

 

 

 

 

 

 

 

 

 

31 for 21 - Dressing and Undressing

Connor has always been good at helping get dressed, but now he is becoming more independent and wants to do it on his own. He is much better at the undressing part, but is now able to zip his own coats if I get it started for him. He has recently learned to take is shirt off. He has been able to get his arms out of the sleeves for quite a while, but now learned to take the shirt off over his head. Luckily he has only done it at home or at Grammy's so far, but I figure it is only a matter of time before he starts removing clothing in public. Last week when I put him in for his nap he was not falling asleep.. I could hear him kicking around about half hour later so I looked in the video monitor and saw that he was taking his shirt off. Now, normally I wouldn't mind, but this was the coldest day of fall so far and we had not turned the heat on yet. I went up and put a new shirt on him, came back downstairs and again watched in the monitor. Connor was taking his shirt off again and throwing it back on the floor. We went through this one more time until I gave up. He is such a silly boy =) The shirt is one thing, but I know we will be in big trouble once he learns to take his pants and diaper off!

31 for 21 - Connor and Madi

 

Connor loves hanging out with his cousin Madi. She is 4 1/2 years older than him so sometimes she is just like a little mom. She loves to pick him up and carry him even though is is very heavy. A lot of times if they are all together, the other girls will be off playing somewhere else, but Madi always seems to stick around to hang out with Connor. She will read to him, play trains, sing him a song and is just always there to give him a hug. I am looking forward to the day when she can babysit =)