Down Syndrome Awareness - Day 3

Here is Connor on his first day of preschool this September. Connor loves going to school and is learning so much. We have seen lots of progress across the board since he started school last January. We were standing by the tree taking first day photo's and Connor started being his silly self.

First he started making funny faces..."really, mom?!?!"

"Okay, here is your smile"

He then started kissing the tree...

Here we go, got a good one =)

Happy to see the bus arrive!

Down Syndrome Awareness - Day 2

We have met so many amazing people because of Connor. Here are some photos from our recent apple picking outing with Saturday Explorers where we are able to hang out with old friends and meet some new ones! Our playgroup meets once a month either at someone's house for playtime or at different locations around NH such as parks, play centers, etc. We always have a great time talking and playing with our friends!

Down Syndrome Awareness - Day 1

October has arrived. The temperature is falling, the leaves are changing colors, Pa's pool has been closed for the season. and it is Down Syndrome Awareness month. The past 2 years I have joined with many bloggers around the world in writing something about Down Syndrome each day in the month of October to help spread awareness and show all our readers how awesome someone with Down Syndrome can be! I have been thinking about it a lot over the last few weeks and trying to find a way to have time to write each day, but at this point I am not sure it is going to be possible. My days are filled with doctor's visits for 3 kids, a full time job, full time taxi driver for 3 kids, and a baby who does not like to sleep very often. I am going to do my best to post something each day; most likely a picture of my amazing son, Connor. Connor inspires me everyday and I hope these pictures show you 31 + reasons why I love my little boy with Down Syndrome.

So proud of himself with his gymnastics trophy!

Welcome Nathan James Murphy

Welcome to my baby Nathan James Murphy. Nate arrived right on time at the end of March and fits right in with the rest of the family. I cannot believe he is already 4 months old. He is rolling from back to belly, but then gets stuck and cannot seem to make it back around. For the first few months, he was a very serious baby and did not smile very often unless you really worked for it, but now he has a great sense of humor and smiles a bit more frequently =) Luckily, he is an easy going baby as he gets carted all around the place running Makayla and Connor to their various activities and with mom on all of her work errands each day.

 

 

 

 

 

 

 

 

As I said, Nathan seems to fit in perfectly with our family and keeps us on our toes at all times. The day after his birth, he failed his newborn hearing screening so of course we worried about that for 2 weeks until we could go back. Thankfully, he passed at his follow up. We were also told by the pediatrician the day after he was born that he had a tongue tie. At first we were going to just leave it alone because he was nursing ok and gaining weight, but after much thought and discussion with his pediatrician and ENT we decided to have the tongue tie clipped. Nathan was around 2 months old when this was done. It was a fast procedure done in the office at the ENT's. Even though we have already been through so much with Connor, it was still very nerve wracking! The doctor numbed the area on his tongue with a liqud and then basically just made one cut with scissors and that was the end of it. He nursed after, fells asleep and just like that it was done. Very happy with out decision to have it corrected while he was young and not under general anesthesia later in life.

Nathan was also diagnosed with Allergic Colitis or MSPI (milk soy protein intolerance) So basically he is allergice to Dairy and Soy Protein and since I am breastfeeding that means I have eliminated all those foods from my diet. I was very familiar with Dairy as I had already done that once with Makayla, but I have learned that Soy is in many, many foods. We have also eliminated nuts of all kinds. eggs, shellfish and fish, but he is still showing symptoms. We found out about the allergies at his 1 month checkup when I mentioned his constant spitup. The doctor then decided to check his diaper and found occult blood in his stool. At that time, she recommended that I eliminate dairy from my diet and see if it went away. We checked 2 weeks later and his diaper was still positive for blood. At that point, I eliminated soy, peanuts, tree nuts, eggs and shellfish from my diet as well. The soy was recommended by the doctor and I decided to take the other out, since Makayla is allergic to them as well. Unfortunately, his stool is still testing positive for blood, but we saw a GI Specialist at Children's Hospital who recommended leaving other foods in my diet becauce CURRENT studies are showing that even though he is still reacting to something, the small exposure through the breastmilk may help him outgrow the allergies quicker. We were also told that in about 90% of cases, the baby outgrows this type of allergy around the age of 1! They explained that it is a different type of allergy than Makayla's since it is effecting his gut and is not an anaphylaxis reaction. That does not mean he won't develop allergies like hers, but there is no way for them to test at such a young age. He has also recently developed eczema so I am not sure if that is allergy related or not.

Today we learned that Nathan has Ocular Albinism just like his big brother Connor. I am still not really sure how I feel about this diagnosis. I know that in the end it is going to be ok, but have to admit I am a little sad. I was really hoping things would be a little easier this time around! The doctor was not really able to make any predictions about his vision at this time since he is so young, but did comment on how well Connor is able to see and she said that based on examination of his eyes she would not predict his vision to be as good as it is. Hopefully, Nate's will be similar!



Here We Go Again

Well it has certainly been a while since I posted! Just over 6 months actually. Just looked back and I last wrote about Connor's third birthday. We have been extremely busy! Connor started school and has made huge gains. He is walking and basically running now. He is starting to say many new sounds and even has a few words. He is finally saying "mama" and not just when whining! We welcomed baby Nathan into the family and are getting adjusted to life with 3 kiddos. As I said, we are definitely busy. Makayla finished up Kindergarten and is going to be a 1st grader in less than a month. I cannot believe my baby girl is going to be six next month! Where does the time go. Everyone is always telling me how fast it goes by, and I am learning that it really does. Makayla and Connor are the most amazing big sister and big brother to Nate. The are both helpful in taking care of him, love to hold him and help give baths, and always want to share their toys. Wonder how long that will last?!?!

Happy 3rd Birthday!

Happy 3rd Birthday to my sweet little guy, Connor! I really cannot believe Connor turned 3 years old today. The past 3 years have flown by and Connor has been through so much. I look forward to everything that the next year will bring and am excited for Connor to start school tomorrow. He is such a sweet, kind, loving, funny, happy little boy and I just know he is going to have a great time making all kinds of new friends.

We had Connor's birthday party at Gym Ken Gymnastics yesterday with about 15 friends and Connor had a really fun time. He loves to explore and had a great time in the bounce house, on the zip line and especially on the trampoline. He loved spending the time with his friends. Thank you so much to everyone who joined us in helping celebrate Connor's 3rd birthday.

Today, Jeff, Makayla, Connor and I went to the mall to go to Build a Bear. Connor picked out a dog to make and got a Happy Birthday shirt for Floppy to wear. He stepped on the peddle himself to stuff him and then again to give him a bath. Makayla made a rainbow bear and of course got a ballerina dress and high heel tap shoes for her new bear. We then went to Burger King for chicken nuggets (the kids favorite) and a ride on the Carousel.

I think Connor had a fantastic birthday weekend and he is ready to start school in the morning!

Happy 3rd Birthday, Connor Patrick Murphy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Bittersweet Goodbye!

This week we have been saying goodbye to each of Connor's Early Intervention Therapists. Connor turns 3 on Sunday which means that Early Intervention Services end and he starts preschool on Monday! We have completed the stressful process of writing his IEP and he is all ready to go on Monday. I cannot believe my little baby is turning 3 and truly is a big boy!

I am not really sure how I feel about his Early Support Services ending, but I can tell you that I am very thankful to each member of his team up until this point. They have all been very helpful for the time that they were here. His PT has been coming since Connor was about 6 months old. So for the last 2 1/2 years she has come every single week to work with Connor on gross motor skills. She has been so supportive along the way encouraging Connor to move onto the next skill as well as giving Jeff and I guidance for things that may come up in Connor's education and life in general along the way. We are truly going to miss seeing his PT each week.

On one hand it will be nice to not always have to try to rush around and clean the house in the morning because someone is coming in, but honestly I may miss the company! For the past year we have had PT once a week, ST once a week, Education once a week, and OT twice a month. In addition to that, we have had a vision therapist once a month since Connor was 4 months old as well as feeding therapist and nutritionist every 2 months for the past few years. It felt like someone was always here!

We said goodbye to his OT on Monday. Connor has always loved it when she comes because she works on self feeding skills so he is able to have a snack =) For his last visit, she brought him munchkins and he was very excited by this. He has only tried a munchkin once before and at the time was not too interested. Well he has developed a huge sweet tooth over the past year or so and munchkins were certainly a special treat. He enjoyed 3 yummy jelly munchkins before saying goodbye to his OT.

Today we said goodbye to his PT this morning and then his Educator and Vision Therapist this afternoon. He gave every one of them a big hug and kiss and waved goodbye as they walked out the door. I think he is sad to see them leave, but happy to be moving on to the next stage in his life and start preschool next week!

This has been a very natural part of his life since he was born. Connor's Early Intervention started when he was just 6 weeks old so he does not know life any other way. They have all become part of the family.  It will certainly be a big adjustment! It was very nice reminiscing today over how far Connor has come over the past 3 years. We talked about his helmet which I had forgotten all about. It seemed like such a big deal at the time, but now I never even think about it. We talked about all of his surgeries and how he was such a champ at recovery. We discussed how much progress he has made in every aspect, but especially in gross motor.  He worked so hard at each milestone, from rolling over to sitting, his adorable army crawl to finally crawling on hands and knees and then standing and now finally walking. They have gone through each of these steps with Connor and I and it is sad to be saying goodbye! We remembered the days when he would throw everything including toys when he was done playing but did not know how to tell us yet and his glasses. He is now much better at communicating that he is all done with a task and he finally wears his glasses somewhat consistently at least when playing!

Friday is our very last visit with his speech therapist and then we are all done and it is time to move on to school! I really cannot believe my little guy who has gone through so much in his short life is going off to preschool. He will be going for 4 mornings a week, but I really am going to miss him!

Thank you so much to his entire Early Intervention Support Team. We love all of you and thank you for your support!!

Connor and his PT