31 for 21 - Siblings

Connor is so lucky to have an amazing sister like Makayla. From the very first moment she met him, she adored him and would do absolutely anything for him. Makayla has never shown jealousy over Connor. We did go through a bit of a rough patch during therapy sessions when she wanted attention, but even then, she really just wanted to be included and be able to play with the fun toys too. Makayla is Connor's biggest motivator and cheerleader. She understands now that it takes Connor a little longer to learn some things, but she reassures me that Connor will walk and talk when he is ready! When Connor took his first steps, Makayla was soo happy for him. She was running around yelling, "Connor just walked, Connor just walked." They have so much fun playing together and make up the silliest games.  He follows her around everywhere and she never tells him to get out. I am sure that will come someday as it does for all siblings, but for now they are the best of friends.

Makayla is just as lucky to have a little brother like Connor. I think he loves her the most and even crawls over to her for a hug first when he gets hurt. He tries to impress her with his new skills. I think she has learned so much from being Connor's big sister and this is just the beginning.

I am looking forward to adding a new baby into the mix and cannot wait to see how they all interact with each other. I do know one thing for sure...they are both going to love the baby and teach so many lessons!

31 for 21 - Happy at Doctors

Yesterday I talked about all of the specialists we see and all the doctors appointments Connor has to go to. I mentioned that he usually does not mind going and for the most part is very happy while there. He is an excellent patient. Here are some pictures and videos to prove my point...

Connor laughing while in the waiting room at the Hematologist

Connor while waiting for the Doctor at the Down Syndrome Clinic

31 for 21 - Specialists

Connor goes to the doctors a lot! It is a bit less now as he gets older, but he is still followed closely by many specialists. The funny thing is he actually loves going to the doctor and is a fantastic patient. I think it has just been part of his routine for so long that it is normal for him. Overall he is a very healthy kid. He gets a lot of colds, but so does Makayla and every other kid I know!

1. Cardiologist: Connor has been followed by the same cardiologist since he was still in my belly. I had a fetal echocardiogram during pregnancy to diagnose Connor's Complete AV Canal defect and he has seen the same doctor every since. In the beginning, we saw him every 2 weeks, but after surgery it was reduced to every 6 months and now annually! He is due for his next echocardiogram in February.

2. Otolaryngologist: Connor has also been seeing the ENT since he was a few weeks old. He is my absolute favorite doctor! He has done 2 surgeries on Connor: the first was to place ear tubes and remove his adenoids and the second was to remove his tonsils and take some biopsies and look for signs as to why Connor aspirates liquids. We see the ENT every 3-4 months.

3. Audiologist: Connor has his hearing tested every 6 months. He has always passed these test showing that his hearing is within normal range for speech and language development.

4. Hematologist: Connor had Transient Leukemia and Thrombocytompenia at birth. At that time, we were told that Connor has a high risk for developing Leukemia before he turns 5. He is followed every 6 months to have his blood checked and a mini physical looking for any signs of unexplained bruising.

5. Pulmonologist: Connor sees the Pulmonologist every 6 months to follow up on his Sleep Apnea as well as his lungs for pneumonia due to aspiration.

6. Ophthalmologist: Connor sees the eye doctor every 6 months to check his vision and follow up on his Ocular Albinism and nystagmus.  He loves participating in the vision exam!

7. Orthopedist: Connor is seen by the Orthopedist for his low muscle tone and to help him walk.

8. Developmental Pediatrician: We see her approximately every 8 months at the Down Syndrome clinic and she monitors his overall medical history and development.

9. Immunologist: We met with the Immunologist/Allergist to check Connor's immunity because the Pulmonologist was concerned that Connor was getting sick often. Like I said, I don't think it is any more than any other kid. They found his immunity levels to be within normal range, however they were borderline so he may need to be followed a little more closely in the future. They also checked for food allergies and Connor tested negative!!!

10. Feeding Therapist: Every 2-3 months to help give ideas on how to improve muscle tone in his mouth, strengthen his jaw, etc. to help with the aspiration of thin liquids.

11. Nutriotionist: Every 2-3 months to go over Connor's diet to ensure he is meeting his nutritional needs and to monitor his growth.

12. Augmentative Communication Program: We see an amazing speech therpist every 6 months who gives different ideas to help Connor communicate until he is able to speak.

13. Vision Therapist: A vision specialist comes to the house once a month to give us suggestions on how to adjust for Connor's Ocular Albinism and nystagmus.

14. Physical Therapy: We just started going to the Physical Therapy clinic at Children's Hospital to help Connor walk. We go once a week. Connor also has an Early Intervention PT who comes to the house once a week.

15. Ocupational Therapist: His EI OT comes to the house every other week to work on self feeding and self help skills as well as other fine motor skills

16. Speech Therapist: His EI ST comes once a week and works on speech as well as signing.

17. Special Education Teacher: She is through EI as well and comes once a week to work on communication, play skills, etc.

Before Connor was born I had no idea there were so many specialists in all kinds of different areas. I have certainly learned a lot =)

31 for 21 - Grammy

Today Connor is at Grammy's house, spending the day with Grammy, Pepere, and Emma. He has been doing this every Tuesday and Thursday since he was 6 weeks old and has a very special connection with Grammy. He loves it when we pull in the driveway in the morning and smiles and waves as soon as Grammy comes out the door to greet us! As soon as we walk in the door, he looks for Emma and crawls right over to pull on her arm and ask her to play with him. This year, Emma leaves shortly after Connor arrives to go to preschool and then Connor gets Grammy and Pepere all to himself for a few hours. Connor loves to crawl up onto Grammy's lap and snuggle in for a nap. For some reason, he never falls asleep on anyone else, but will sleep on Grammy anywhere. I have been trying for almost 3 years for him to cuddle with me, but he wants to be on the move all the time, but not with Grammy. He likes to sit there and listen to Grammy sing songs and then falls sound asleep. They also color, read books, and work on flash cards everytime they are together.

Recently, Grammy started taking Connor to a program at her local church. It is for kids ages 0-5 and he loves it. They have story time, craft time, snack time, prayer time, and free playtime. Connor is doing fantastic and comes home with the most adorable crafts!

Connor also loves to play with Pepere as long as Pepere isn't coughing! They spend hours stacking blocks and knocking them over, playing with cars, and doing puzzles. Connor hates it when Pepere coughs which happens quite often. As soon as he coughs, Connor blows Pepere the kiss of death and waves to him telling him to get out of here! He then crawls over to Grammy for some snuggles.

31 for 21 - Connor's perspective!

I am not even sure where to begin. I am one busy kid. A typical day for me is very busy. I start out the day by waking up and playing quietly in my crib until someone comes up and turns the bright light on to begin my fun filled day. I change out of my pj's and into my clothes and then we head downstairs for breakfast and Mickey Mouse =) As soon as breakfast is done, we go outside and watch Makayla get on the bus. I love watching the big yellow bus come down the street. Makayla gives me a big hug and kiss goodbye and walks across the street. I help the driver know what to do my signing open as she gets near the doors. The door opens and mom and I wave goodbye as the bus drives away.

We head back into the house, cleanup our breakfast mess and my first visitor arrives. Usually when someone comes to play with me she either forces me to stand up and try to walk, or I get to sit in my tripp trapp chair and play with lots of different toys. It all depends on who it is! My favorits is when I get to sit in my chair. They take out a book of pictures and I am able to choose from 4 which one I want to play with first. It took them a little while to figure out that I obviously did not want to be playing with the pictures I was taking and tossing onto the floor. For some reason, they want me to pick the one I want, take it off the book and move it to a different area and then point to say "I want Mr Potato Head" for example. I don't know why I couldn't just do it the other way. I was being perfectly clear. During this time, my favorite toys are Mickey Mouse, Mr. Potato Head, books, and the tube that I get to spread open and wear as a hat! Sometimes they try to convince me that I want to play with puzzles, pegs, or ball toys, but they just don't seem to understand that my answer is no. I don't want to play with those toys and if I did, I would choose the picture! It is not that hard. One day, mom and my friend were being very silly and were forcing me to play with the peg toy. They wanted me to choose which color I wanted to put in next. I kept very clearly pointing to the "I want" picture and then signing cookie. I was saying, "I want cookie, please," I did not want the red peg, yellow peg or the blue peg. They think that I don't understand the pictures, but really they were just thaving a hard time understanding that all I wanted was a cookie!

After the visit from my first friend, mom and I leave in the car to go to the post office and then the bank. I love going for rides in the car so this is always one of my favorite parts of the day. When we get home another friend sometimes comes to visit. When one specific friend comes I get to play for a little while with any toy I want to from her bag and then I get to eat. This if my favorite time. They always let me feed myself and make a huge mess with yogurt, berries, cottage cheese, cookies...all kinds of yummy food.

Next, we go back in the car to go pick up Makayla from school. I don't like the time we spend sitting in the car waiting for her to come out, but once I see her I am back to smiles and giggles! We come home for lunch and then mom reads me 3 stories and puts me back in my crib for a nap. I love going into my crib, but am not always ready to take a nap. When I wake up from my nap we usually go back in the car to take Makayla to one of her activities like dance or gymnastics and then home again for dinner. This is when daddy comes home and definitely my favorite part of the day!

While mom or daddy cook, I play with all of the bibs and containers and pots and pan in the kitchen. We all sit down together for dinner and then get to go up for bath time. Another favorite part of my day. I absolutely love to splash in the water and take cup fulls to pour outside the tub =)

After bath, we play for a little while upstairs, stacking blocks or having a dance party and then read stories. Then it is time for bed and boy am I tired by this point. Let me tell you, it is a lot of work being 2 1/2 years old!

31 for 21 - Connor loves birthday cake!

Connor absolutely loves birthdays. It doesn't really matter whose birthday it is, but he loves the celebration. He loves the singing, the candles, the clapping, and most importantly the cake =) I think he knows that all the craziness of the day will ultimately always lead to the cake. He has the biggest smile on his face when everyone is singing happy birthday and claps as loudly as he can as soon as the song is done! He then starts signing cake, saying mmmm! It really is very funny. I am looking forward to his birthday in January to see his face when we are all singing to him!

 

 

31 for 21 - If I knew then...

When Connor was born my first questions were about his heart and medical condition, but once I knew that he was breathing and stable my very next question to Jeff was..."have they said anything, do they think he has Down Syndrome??" As I have talked about in the past, I did not know much about Down Syndrome or what it meant, but my visions were not necessarily positive. I had no idea what to expect for my baby's future or for our future. Would this child be living with us for the rest of his life? Would he ever walk or talk? Would he learn to read and write? Would we ever have time to ourselves again or would we constantly be looking after our child. As I have learned over the past few years, none of those questions matter. Connor is the light of my life. He is absolutely amazing. He has changed my perspective on life and taught me so many lessons on never giving up until you succeed. If I had known when he was born that he was going to be the perfect little guy that he is, I would have never worried about those things. I would have been able to truly celebrate his birth and not worry about the future.

Connor may learn things at a slower pace, but I know that he is going to be able to do all the things that typical people can do. I know that he will walk, talk, write, read, and someday have a job. I know that he is a truly happy kid and every day with him is a blessing. He makes everyone around him smile and laugh with his amazing sense of humor. He is proud of his accomplishments and makes sure that everyone around him knows what he can do. Connor has family and friends that love him unconditionally and the love that he gives to others is such a rare ability that we truly treasure. No matter where he goes or what he does, he is going to be successful.

If I knew then what I know now, I would have spent more time enjoying the miracle that he is instead of worrying what the future will hold.