A Grandmother's Point of View

"My mother wrote this, and I just had to share it with you all "


Down Syndrome is what Nathan has - NOT who he is.
Not like chicken pox or measles, more like being born
with red hair or left handed (to put it simply). Everyone
of our children deserve the best we can give them. From
unconditional love, teaching them manners, morals and
behaviour to the best of our abilities. Every child is
different and learns a different way. They have their own
pace, personalities and interests. Parents dream and hope
for success for their children, but what may be success to
you and I may not be to others. In my lifetime, I have heard
the word "plateau". I don't believe this word should ever be
used about a child. They may be resting or getting their
second wind, however, no matter what age we are we never
stop learning. How many parents, especially with teenagers,
have thought or said, "Will he/she never learn?" Of course,
he/she eventually does. It may have taken rephrasing it 20
different ways, being consistent, patient, and under all that
frustration, loving. But, he/she usually does learn. Some may
think "What about his medical and/or physical problems?"
So far Nathan has heart problems and as he grows he may
have others. We don't know as yet and will cross each bridge
when we get to it. Take a look around and see the young
children in your neighbourhood. How many have asthma,
allergies or diabetes? How many are in abuse or broken homes?
How many are hurt on the inside where no one can see?
Nathan has a very strong support system, not only from CHEO
(which is fantastic) but from family and friends as well. Is it easy?
No, but raising children is one of the most worth while professions
I have ever done - it is all in the heart. As I stated at the beginning,
Down Syndrome is what Nathan has -- NOT who he is!

Love from
Gramma Duck

Developmental Pediatrician - First visit

The pediatrician I met today was simply amazing. She definately knows her stuff. Of course she specializes in children with Down syndrome so it's no big surprise I find her wonderful. She was fantastic with Nathan and very thorough. She noticed Nathan has thrush and so he is now on medication for that, she also changed his reflux meds to something a little stronger. She was teaching a med student today, and Nathan was his first infant with Down syndrome. So they took their time with my permission to go over Nathan's Down's markers and general health. I of course listened in and learned a few new things. I had no idea that a crooked pinky was one of the markers. Brian and all my children have this trait so it was a complete surprise to find out it was also a sign for ds. She mentioned it is common for the average individual to have one marker it does not point to ds unless there are several all together. Huh, learn something new every day!

So far develepmentally Nathan is doing well. He is doing all the things a typical 2 month old would be doing. Yea Nathan! I learned that typically a child with Down syndrome is a few months behind on the typical milestones. So instead of sitting up at 6 months like a typical baby, he may sit up at 9 months. Walking might not happen until he is two. Interesting. We will just have to wait and see what Nate decides! I am looking forward to every new thing he ventures to try! And I will be sure to encourage many more..hee hee..

Nathan will be schedualed for hearing tests every 6 months, so I was told today. His and most children with Down syndrome 's ear canals are small. Fluid can get trapped easily and it is not uncommon for them to have issues with hearing or to require tubes. Nathan will also be getting his eyes checked, and be having an ultra sound on his hips. While moving his legs about, a regular type thing doctors do..Apparently checking hips..The med student noticed a "click". Now the doctor doesn't think it's anything but would like to rule it out so Nate will be having an ultra sound. I guess issues with the hips are also common with ds children. And blood work too to check his thyroids. And I think that covers it. Besides, all the stuff for his heart.. I have never seen so much of doctor's in all my life! I like doctor's and all, but I really don't want to see them this much.. Although Nate is totally worth it!

I find it interesting how with all these people I am meeting for Nathan, they all say the same thing. "He is lucky to have a mom like you" . And I have to say that it is I who is the lucky one. I am a little baffled at to why I feel that I am blessed to have a child with so many complications. Maybe it is because I am so happy that he made it here, and that I did not have to go through the sadness of a miscarriage. Perhaps it is because I am truly learning the importance of "stopping to smell the roses". I don't know, all I do know is that I love him to pieces and I am so lucky to be a part of his life.

First Canada Day and more..

Wow, time sure is going fast! I can't believe Nathan will soon be 2 months! He is starting to smile more, he loves bathtime! He reached out for a toy the other day and is getting to be more and more alert. He is also making cooing noises, which has to be the most adorable sound I have ever heard. His first Canada day was alot of fun. We went down to the festivites by the beach and hung around with friends. Kris was busy taking tons of photos with his camera, and racing along some bouncy course. He beat a 13 year old on the course and it made his day! Mykaela spent the week with her dad, truckin. In the evening friends took Kris to see the fireworks while I stayed home with Nate. I am so thankfull for all my friends! Kristopher video-ed the fireworks so Brian, Mykaela and I wouldn't miss out. How thoughtfull!

Health wise Nathan has had a few really fussy days. He screamed in pain a couple of times and was really restless and could not settle at all. It was really tough to keep him comfy. I took him to the pediatrician and Nathan was diagnosed with gerd (acid reflux). Poor little guy his tummy was giving him a hard time. He is now on medication and is starting to improve. Which is great , now I don't have to hold and rock him all day long! This is why I haven't had a chance to post thus far.

Nathan has many appointments, I won't post updates on all of them unless there is something new to add. We are meeting all sorts of new people, doctors, nurses, resource workers, new friends who have been or are going through similar journeys. Sometimes all the new people entering into our lives are a little overwhelming. And I know I have many more people still to meet. It will be interesting to learn how to juggle it all. Hopefully I won't drop any balls along the way! I just keep reminding myself to take one day at a time. And to breathe, lol!

DS Pic-nic and Cardio Appt.

This past Saturday, the Down Syndrome Association in our area hosted a picnic. So of course we went! It was a great experience. We were greated right away, plastered with name tags and introduced to many families. There was a parc, pool, fishing pond, tatoo's, face painting, raffle table, live entertainment and gifts for the kids. Oh and a free BBQ to boot! We all had a blast and made some new friends. We will definately be going again next year!

Nathan had his appt with his cardiologist today. All went well. Can you believe he weighs 10 lbs already! He was wide awake for this appointment, and enthrawelled the new doctor and med student with his cuteness. So far the game plan is still the same to have surgery between 4-6 months. They don't want to do surgery prior to 4 months since then the heart can be trickier to work with. So Nathan is doing well on his own so farr and does not need any medication yet. The next visit will be in 6 weeks, and then he will have a echocardiogram as well. (that is an ultrasound of the heart)

Kristopher had a field trip today, to a pool in nepean. His class was suppose to go to Mt. Cascades but that got quickly switched due to the weather. Brian took the day off and went with him. They had a blast and came home happy. Mykaela is looking forward to her birthday tomorrow and is very anxious for the arrival of Gramma and presents. And that is all for now, I am off to spend some time with my hubby!

Hearing test

Nathan had his hearing screened today. For the test they put a little probe type thing in one ear and have other wires taped behind each ear and one on the forehead. He needs to be resting in order for them to get clear results. Well today it took awhile to get him resting..:) He is just too curious. He also doesn't like anything in his ear! We did however, finally get it done! His right ear is all good. His left ear needs more testing.. So another appointment will be made with an audio-ologist. Then we will be able to get a clearer picture of what hearing issues there are with that ear..

I did think that he may have hearing issues. I am a little sad to know that there is a problem. And frustrated that I don't have any answers yet. It just seems to be one thing after another with this little guy. Not knowing is very hard. He has had a few issues come up this week. The other day he slept forever and couldn't be woken up. It was very scary. I called the cardiology department and he ended up waking up while I was on the phone. I've kept a close eye on him and he hasn't had any sleep issues since. It's impossible to go through a day without worry. I am hopefull that once his surgery is over and all the tests are done, that life will go to some kind of normal. I am hoping to get a better idea of when the surgery may be next visit to the cardiologist.

On the positive side, Nathan went to his first truck show with daddy.. He did very well in the car, and we all enjoyed the day together. This Saturday we go to a picnic hosted by the Down syndrome assoc. We are looking forward to it and to Mykaela's upcoming birthday..

What is Down syndrome?

Down syndrome is a chromosomal disorder that occurs in approximately 1 in 700 births in Canada. A person with Down syndrome will have 47 chromosomes in each cell instead of 46. Down syndrome results from a genetic imbalance in cells caused from an extra set of genes on chromosome 21. Down syndrome affects all races and economic levels. Statistics show that 80 per cent of babies with Down syndrome are born to mothers under the age of 35 years, as these are prime child bearing years.

There are several characteristics that are more common for babies with Down syndrome. They may include: low muscle tone, eyes that appear to slant upward, a flat nose bridge, relatively small nose and ears, and a single horizontal crease on either palm. Newborns with Down syndrome look like babies who do not have Down syndrome.

About one-third of all children with Down syndrome have congenital hear disease. Many are prone to respitory infections. Many experience visual, hearing or thyroid dysfunction. Greater frequency to leukemia. Greater susceptibility to Alzheimer's Disease.

There is a range of development in children with Down syndrome from severe mental handicap to near normal. Factors influencing this range, in addition to early intervention programs, include the other genes the child inherited from his family, effects of fetal distress or difficult birth, health problems, resulting in low oxygen or prolonged hospitalization for health reasons.

Many children with Down syndrome are performing at levels undreamed of in years past. Young people are graduating from high school with vocational diploma's, many are holding jobs in multi-national companies, in stores and garages. Some excel in sports, some in music and arts receiving worldwide acknowledgment of their talents.

For more info: http://www.cdss.ca

Complete Atrioventricular Canal Defect

This is a brief description of Nathan's heart condition. I will not be going into too much detail or list possible complications, it's just too scary.

The complete form of A-V Canal is the most serious. There is a very large hollow hole between the four chambers. As the heart pumps, blood is ejected everywhere, in no specific direction. There is no differentiation of oxygenated and deoxygenated blood. It is all mixed, in one large chamber, being pumped everywhere. Try to visualize a heart with complete A-V Canal as a hollow ball. If you put oxygenated blood in on one side, and nonoxygenated blood on another side, and then squeeze it, there is no way to keep the blood seperate. All of the blood will mix, and in the heart there in no way to send nonoxygenated blood to the lungs and oxygenated blood to the body. The mixed blood that is sent to the lungs is abnormally high in oxygen, and the blood going to the body is abnormally low in oxygen.

The two valves that normally seperate the upper atria from the lower ventricles are deformed too. Because there is no septum in the center of the heart for the valves to "anchor" onto, the valves fuse and form one common valve. This complicates the blood flow even more. Blood flow through the heart is very specific. In the case of A-V Canal, there is pandemonium and chaos in the direction of the blood flow. To prevent complications with the lungs surgery is performed before the child's first birthday.