Saturday, October 17, 2009
I took Blyss for her Jazz class this morning. She started Jazz about a month ago at a local dance company. It is packed with children of all ages. Today I saw the cutest thing. A little girl with her blond hair in a ponytail all dressed in a little black body suit with pink tights. She was sitting in the circle of her peers ready to start her class. Oh and by the way she had Down syndrome.
I can not tell you how overjoyed I was. I only wish that when I had my prenatal diagnosis that instead of giving me a old photocopied booklet of what children with down syndrome were like, that they would have simply have done something like tell me about all the possibilities of what our daughters and sons could be. The girl today spoke a million words to me in a blink of an eye. That she was happy, thriving, living, learning and laughing.
This is a late post but I wanted to get it out. We got the call. We have been scheduled for Ear tubes and a G tube on October the 28th. I think we are ready for the surgery.
Thursday, October 15, 2009
Here's how the story goes. When I was pregnant with my first child, we could not find out the sex of the baby because our baby kept it's legs crossed. Julian and I knew that we wanted really great names, but that's about all we agreed on. We had a hard time picking a name that the other liked. After going through books and magazines we came up with a name for a girl. Our initial name was Sienna Marlee with several different variations on the middle name.Isn't it great what a journal will tell you. I can barely remember that we had picked this name. At that time we were still brainstorming about a boys name. From what I remember and from the journal it looks like we had a hunch that is was a girls so we really focused more on the girls name. We struggled with names through out the pregnancy. Julian and I tend to have different ideas of what names to pick. I like really different names and maybe he likes more conservative ones. So through out the whole pregnancy we looked at names and found it difficult to agree to something. My dues day was July 7th. Finally by the first week in June we had added Blyss into the mix. I believe I had come across it in a book and suggested it to Julian. Surprisingly he seemed open to it. Later he mentioned to me that he saw the name Bliss in the book Power of Now close to the time I mention Blyss, so he though it was a sign. We had Blyss spelt in two different ways. The typical "Bliss" and of course the way we choose it "Blyss".
I am going to tag the Blogs below. If you have already been tagged please ignore mine:
The Stevenson Family
Wednesday, October 14, 2009
The bad news is that I missed a day of the challenge, but the good news is that we are home and Wysdom is doing well now. Tuesday was quite the day. I have learned several things about Wysdom. Firstly, that he never does anything the easy way! Secondly, he is a fighter and one tough cookie. We left our house on Tuesday morning at 10am and didn't get home until 7pm. I was so tired and had a bad headache that I went straight to bed.
We were scheduled for a 12:00pm sedated scan and we didn't actually get that started until about 2:00pm. They were behind schedule so we just had to wait. Wysdom was on no food from 7:00am so it was a long wait. They came and took him from us around 2:00pm. To say that I was a little nervous was an understatement. It brought flashbacks of OHS when they took him away. (Anyways that's something that I will always hate to do...hand over my baby). By about 2:20 I was getting a little concerned as it is only supposed to be a 5 minute test. Finally the supervisor came out and told me that there was a change of plans because they could NOT find any veins to use for the IV site and therefore could not inject the sedative or the contrast. They needed the contrast or die injection for the scan as they are looking at the optic nerve and it would have provided a better scan and some comparative pictures.
They tried four pokes for the iv and then decided that they would do it without the contrast. Wysdom was put to sleep with gas before they started the iv pokes. Unfortunately they had to intubate him and give him gas for the entire procedure. The intubation caused him to choke and gag throughout the test. When they brought him into recovery he was feisty. He was pulling off the oxygen mask and screaming his head off. He got so worked up that he had to be suctioned!! He totally hates that. So it was a little scary for a few minutes until we could get him settled down. I kept thinking in my head " Wysdom calm down and don't do any funny stuff...I want you home" He continued to scream for about 15 minutes and did a pretty good job at raising his heart rate. Finally we were able to get him settled, but boy was he unhappy at the slightest movement or touch. They monitored him until about 4:30pm and then let us go home. So all in all it was successful test, it was just done the hard way. Once we got home he started acting more like himself and smiling a bit.
On another note while waiting for the test and during recovery we were paired up with another family who was having a CT as well. There little one is four months old. He has cancer in his leg and now lungs. The mom found a lump in his leg. How heartbreaking! I was so surprised when she told me. I have never really met anyone that young with cancer. So we shared stories and talked while we waited. It was nice to be able to connect with another family like that. I will be keeping them in my thoughts.
Thank you all for your thoughts and prayers we truly appreciate it. We will find out the results of the CT scan later in November. Hopefully everything looks okay with the optic nerve. We still will have two other tests to be done before they conclude whether Wysdom will need eye surgery or not. His other tests will be hopefully less eventful.:)
Monday, October 12, 2009
Please keep Wysdom in your thoughts on Tuesday. He is having a sedated C.A.T. scan done to check to see if there is anything wrong with his eyes, specifically the nerves. The C.A.T. scan is a minute or two procedure. We are more concerned with the sedation and the possibility of them intubating him for the test. We are hopeful that things are going to go smoothly and that we will be home in a couple of hours. As well we are hoping for the best results possible from this test. This is his first time back in the hospital for sedation since his OHS. It should be a piece of cake but I am lying if I said that I wasn't a little nervous. I will let you all know how it went when we gets home.
Sunday, October 11, 2009
In Canada we are celebrating Thanksgiving weekend. In honour of the 31 for 21 Challenge for Down syndrome awareness, I thought I would mention 21 things that our family loves about Wysdom and are thankful for. So here we go...
- His smile
- His laugh
- The way he looks at his sister Blyss
- His love of music. He swings his legs while he sits in his bouncy chair when music is played
- His endless babbling and cooing
- His strength during open heart surgery
- How he always overcomes difficult times
- How he smiles with his eyes
- When he blows raspberries
- His ability to make our family and extend family stronger
- The way he sucks his toes
- Watching him use his feet in many acrobatic ways
- The way he says dada
- How he can watch himself in the mirror for ever
- How he is willing to do anything during physical therapy even though the toys are sometimes far out
- How he splashes in the bath tub
- When he grabs his sister and looks like he is going to eat her up
- The way he makes doctors and therapist smile and laugh
- How he melts the hearts of so many.
- His chubby cheeks
- How he has taught us to LOVE UNCONDITIONALLY
We love you Wysdom and all that you have brought to our lives. We are so thankful that you are here and we are so happy that we are your parents.
Saturday, October 10, 2009
Today I had a special surprise encounter at our local park. It's a little bit cold here today, but I wanted to take Blyss out the the park. The first thing that Blyss wanted to do was go on the swings. We went to the swings and there was a girl there with who I thought had Down syndrome. I am still so new to this that I just pushed Blyss quietly on the swing. Inside I was excited and trying to figure out how to approach the situation. I am not sure what is okay to say or not. The father of the girl was talking to another little girl on the swings. I didn't want to be rude and interrupt. So I kind of pipped in when I could about random things. I tried not to stare at the little girl. I was pleasantly enjoying her conversation with her dad and the other little girl.
Finally after several attempts to jump in and say something, I finally just said "I think your daughter and my son have something in common " He said, "What the Wiggles?" I laughed and then went to explain our situation. I could see by his interest and acknowledgement that his daughter did indeed have down syndrome as well. She was a lovely little girl around the age of 10. The father gave me the advice that all children are different. He spoke of when his daughter learned to walk. He quoted the date, year and exact time. She walked when she was 4 years old and he was so proud. I must say that I am not sure what I expected, but her language and communication skills were great. Her father said that she was in a regular class room in a school just around our house. This was such a positive experience. I had to go play with Blyss on the slides, so I couldn't stay and chat although I would have loved to. He mentioned that Buddy Walk next month and I said I would be sure to find him. Such a blessing the way the universe arranges these little surprises and special encounters. I came home beaming from the day.!!!!
Friday, October 9, 2009
Sometimes when I have a chance to relax, I get to think about all of the assistance that we have been given with Wysdom and I know that we are truly blessed. Since I live in Canada I know that the services are quite a bit different here than in the United States. For anyone that has a baby with down syndrome or is pregnant with a prenatal diagnosis, there is lots of help out there for you. We have had access to services and to funds that help us in taking care of Wysdom's needs.
For example tonight I have a wonderful respite worker who comes into our home and provides assistance for about 8-10 hours a week. She works with a local agency called Extend a Family. We were able to select her after interviewing her and then we were able to train her to work with our family. She is a great help because she is a student nurse. Due to the fact that Wysdom is deemed technologically dependant( due to his feeding tube) we qualified for these respite funds to help us. Our student nurse comes in and helps with daily activities such as bathing Wysdom and Blyss. Cleaning the feeding bags that are used for the ng tube and even giving medication. She also plays with Blyss a lot. We are so blessed to have her help on a weekly basis. It gives me a little break, helps with when Julian is out of town like tonight and provides one to one time with both Wysdom and Blyss. It even allows me time to do things like write this blog post or do laundry.
If you are in Canada contact your local Down Syndrome Association and ask about funding for your child. Since I found out prenatally, I applied to a lot of these services while pregnant. This got me started on most of the paperwork. Check your local listings for organization that provide assistance. The contact information is different from city to city, and province to province.
- In Ontario you can contact the Ministry of Community and Social Services Ontario Disability Support Program at 519-886-4700. They provide financial support for children with disabilities up to the age of18 years old. There is no testing required.
- Contact your local Down Syndrome Association for local services
- Look for an Infant Development Program
- Look into special services at home through the Ministry of Community and Social Services at http://www.accesson.ca/mcss/english/resources/forms/ssah_app_form.htm
I have learned that there are many services out there to help you. You just have to talk to the right people and do a little detective work!
Thursday, October 8, 2009
Today Julian and I were changing Wysdom's diaper. Yes together, because it was a messy one. In the middle of changing the diaper..both Julian and I stopped. Wysdom was doing his regular babbling that he does and then we heard something. It wasn't quite babbling. It sounded more like he was talking to us. We think he said "all done". Yes we know this is crazy but we tell him all done about 10 times a day. We use it at the end of his meals and when ever he gets fussy when we change his ng tape or put saline in his nose. At the time he was actually trying to put his hands together. This is funny because it kind of mimics the way we sign "all done" to him.
We still are talking about it and are not really sure what he said...but he is definitely trying to say something to us. We wonder..is it really possible that he said it or are both of us making it up. Are we so tired that we can't focus or did he really try to say it. We are going to watch very closely to see what happens and if he tries to say it again.
On another positive note he now sucks his toes.!!! Yum Yum. Our boy is getting big and doing lots of new things everyday. What a joy!!!
Wednesday, October 7, 2009
Well I would really like to hear others opinions on what they are planning to do in regards to the H1N1 vaccination? Especially those who have medically fragile little ones or have heart issues. I feel like I am between a rock and a hard place on this one. Generally I don't believe in getting the flu shot. I have never had it before and either has my daughter. However with Wysdom he brings a whole different perspective into the mix. I have already seen him in the hospital on three different occasions for a total of 3 months which in comparison to some is not the long. He had RSV when he was 2 months and he was on an iv for a week and a half.
I am totally in a state of fear either way. On one side I don't like all of the chemicals in the vaccine. I have read about the damages that it can cause. However on the other hand I don't want him to get sick and be in the hospital fighting for his life either. What is a mom to do? I would really love to hear your perspectives on all of this. I know that I am his advocate and mother and I have to ultimately choose for him, but I think only peers can truly relate to my my situation.
Tuesday, October 6, 2009
This is a last minute post from my husband. He knows that I am doing the 31 for 21 Challenge and that I didn't get a chance to post today due to a hectic schedule. So he woke me up at 11:56pm and told me to post this paragraph that he wrote. Thanks Julian for the beautiful words and for making sure that I don't miss a day of the challenge.
"We are coming near to Wysdom’s first B-Day and I thought I would share my deepest gratitude to my wife Sasha for all the commitment and love beyond words could describe that she continues to show for our family. I could have never imagined having such a wonderful wife and I am very thankful for her as a partner for life. I hope that she uses this for her blog entry this evening. "
Monday, October 5, 2009
Down Syndrome Creed
My face may be different but my feelings the same
I laugh and I cry. I take pride in my gains.
I was sent here among you to teach you to love,
As God in the Heavens looks down from above.
To Him I’m no different; His love knows no bounds
It’s those here among you in cities and towns
That judge me by standards that man has imparted
But the family He’s chosen will help me get started.
For I’m one of His children so special and few
That came here to learn the same lessons as you.
That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.
The Lord gave me life to live and embrace
And I’ll do it as you do - just at my own pace.
Sunday, October 4, 2009
Well we spent the early part of this morning and afternoon at the hospital. Nothing to major except that Wysdom pulled out his NG tube. What a little trouble maker!! I can't blame him though, who would really want that tube in. I was woken up by my husband who said "we need to take a trip". Right away I knew the tube was out and we were going to the hospital.
Today was a bit of an adventure at the hospital as the nurse was not that familiar with the ng tube. She probably does not get practice putting them in and checking for the right placement that often, so let's just say she was a bit rusty. You always have to make sure that it is placed correctly and not in the lungs as it would lead to aspiration. We had some discrepancies as to where the tube should be placed. Normally it is measured and placed at a certain number on the tube. Today she had a huge difference from where we normally get it placed. It eventually all got worked out and we just adjusted it later on.
So half the day is gone..but we are home now and happy. Being back in the ped's ward at the hospital today was a little to familiar for us and I was eager to get outta there!!!! Happy to be home with family today.
Saturday, October 3, 2009
We went to Kid's Ability today to meet with Wysdom's future speech therapist. Kid's Ability is a local charitable organizations that works in partnership with families and communities to cultivate the development of children and young adults with developmental, physical and communication disabilities.
Our family has been there before for an initial assessment. We were put on the waiting list many months ago and are now nearing the top of that list. Friday we met with Wysdom's future speech therapist. We already have been working with a speech therapist in the home since Wysdom's birth, however she is strictly part of his feeding team. The therapist that we met today will just focus on his speech. Feeding and speech are connected as they use the same muscles, but for our situation we have two separate therapists.
We got some tips on things we can do to help foster Wysdom's speech development. So I thought that I would share them with everyone. Below is a list of independent exercises that can be done at anytime to stimulate his muscles:
- Put a warm or cold cloth around his mouth (really which ever is preferred)
- Use your hands to open his mouth in the shape of an "O"
- Put his lips together with your fingers in a pursed fashion
- Put pressure under his lips to get him to open his mouth
- Make gestures with your face and encourage him to copy them. Things such as smiling, making faces, blowing raspberries ect.
- Initiate different sounds and provide lots of examples of babbling and cooing
- Try using a vibrating teether for mouth stimulation(at Toys are Us)
- Repeat what he says and then say something new to see if he will copy you
- Get him to try to see the movement of your mouth
- Lastly but most importantly...allow him time to respond to you. Give him time to speak. Most adults may want to keep talking to the baby, but giving them lots of time to respond is the key.
We are excited to continue helping Wysdom with these new tips. While we were there he provided the speech therapist with lots of coos and babbling, which was fun!! We are also using some sign language with Wysdom. So far we have used "all done", "up" "sleep" and "gentle". Gentle is being introduced because our little man loves to pinch his sister, already!!! We will keep you posted on our progress.
Friday, October 2, 2009
This week though I got a big surprise, when I was in the kitchen cooking. He yelled out Maaaaam!! It wasn't a quiet little maaam. It was a strong yell. At the time he was getting fussy and he sure did let me know that he wanted me. It was nice because my mom was with me to, so she got to hear it for the first time as well. All I can say is that I am so totally overjoyed and proud of my little boy.
How could I not support all of you. I am going to join the 31 for 21 challenge, where I have to blog for 31 days in efforts to raise awareness for Down Syndrome as October is ds month in the United States.
I live in Canada so it is a little bit different here for me. We don't have a full month for ds awareness, instead we have one week in November that is dedicated to ds awareness. So I figure by the time I finish this challenge, I will move right into our Canadian ds awareness week starting the first week in November. How cool is that!