Wow, didn't think we would be there that long..

Nathan and I spent a total of 6 hours at Cheo the other day. Many tears, many tests and too many minutes to count. I am very thankful that Kristopher and Mykaela were lucky enough to spend the day with friends. They had very eventful and fun filled day, and I am glad.

So Nathan's first test was an echo. That is essentially an ultrasound of his heart. He was relatively co-operative. Just a few grunts and groans and squirming here and there. Nathan is always squirmy when he is awake. One of his little quirks that I just love. Afterwards he had an EKG. Well it was quick and easy until it came time to take off the sticky tabs. Then my adorable little peanut, was very mad. He protested very loudly. It reassured me that there is not much wrong with his lungs, lol. Afterwards we met with the cardiologist. He had his vitals done at this time. The doctor wanted more tests. She wanted blood work and a chest ex ray. So off we went.

Blood work, was just awful. His veins in his arms are terribly small. The technician was concerned that she couldn't get the vein in his arm on the first try, so she wanted to get the blood from a vein in his scalp. AHHHH!! His what?? Your going to prick my baby where??? I wasn't prepared for that. So yes I shed a few tears. The technician was very good at calming me down. She didn't want to poke around and make it terribly uncomfortable for him. However, she has to make him cry continuously in order to get a sample from his scalp. Great..Sigh..So okay, couple of deep breaths, here we go. I held his hand. And had to stop cause he had to cry and I was inadvertently comforting him. So I watched them prick my baby's head, and listened to him get extremely upset while they got enough of the blood they needed. It wasn't nearly has bad as I had first pictured it in my mind when they first told me what they were about to do. I still don't like it, but who likes to see there kid cry?

Next test was a chest x-ray. Waiting was long. There bathrooms are too small to fit a stroller, and there was no way I was placing the car seat on the floor. In a 6 hour period, you just gotta pee at some point. Thankfully, the nurse from cardiology came looking for me, thinking I might be lost. She stayed with Nate so I could do my business. Phew!! That could have been embarrassing, lol.. When I got back the had Nate in the ex ray room. They strapped him in a tube with his little face sticking out and his arms sticking out above his head. Nope he didn't like this test much either. And yes I teared up too. Now he handled this test like a trooper and didn't cry very long. I think the fight was out of him at this point. He was exhausted and wouldn't eat anything. He missed two bottles while we were there. We quickly returned to the cardiology department.

Now the cardiologist stayed late for us. The tests results showed that Nathan's heart was enlarged and that his liver was a little high. Signs of the beginning stages of cardiac arrest. Meds were prescribed to help him out. The blood tests that came back showed some concerns, his white blood count was high. He is not sick. It could be a sign of some disease, that I don't remember the name of, or it could just be cause he was stressed. It will have to be followed up with one of Nate's pediatricians.. And that was it. We are to go back next week sometime to have more blood work and to see how the meds are working. We got back to CP at 7pm. A very long day. Little guy was exhausted and slept very well. He caught up once we were home on his missed bottles and was zonked out when he wasn't eating.

And that was our adventures of that long dreary day. Lesson's learned. Don't go alone for testing in case I have to pee, cry, or both! And make sure to continue to get my other two looked after so my hands aren't too full.

Tomorrow we head out to a truck show. Got the all clear for travel with the cardiology dept., you know cross my t's and dot my i's.. So we are anxious for a fun day out! Okay, I'm just happy to get out of the house for anything besides a doctor's appt. ! Lol. So take care and we'll post again soon!

I wanted to cry too..

Today Nathan got his first set of immunizations. He did not like them..He cried, and cried and nearly puked. He choked and gasped and cried some more. His little face went deep red his bottom lip went out in a very unhappy pout. And 10 minutes later he was fast asleep. I must admit I had a hard time holding back the tears too.. It sucks seeing your child in pain. I wish I could take his place for it all, the immunizations, open heart surgery, whatever scrapes and bruises he will no doubt get as he grows.

Today is one of those days I hate the hand I've been dealt. I watched in horror has my sons arms turned a deep purple while straining to fill his diaper. I'm sure I stopped breathing. He didn't cry, it didn't faze him. It did shake me up tremendously. How am I going to keep it together when he goes in for surgery? It freaked me out to see his little chubby arms turn different shades from the elbow down. I was so close to bawling at him getting an immunization. How in the world will I stay strong enough to hand him over to the surgeon? How will I not lose it completely when I see him all hooked up to different machines, wires all over and a large scar going down his precious little chest. Okay I know I have to take it day by day. This is my mantra I repeat often to myself. I will find the strength within has I need it. God, I hope so..Well taking day by day, today really sucked.

Nathan's cardiology appointment got bumped up to tomorrow. He is starting to eat and wet his diaper less. He is sweating more and his skin is a bit on the mottled side (mottled meaning a bit splotchy looking). These issues had the cardiologist concerned enough to bump up his appointment. And well now that he turned purple I am glad that he gets seen tomorrow. I do dread the echo. I hope it's not too tough on the little guy. It will be a challenge to keep him still enough to get the tests done. And he will get blood work done also, so another bout of crying will no doubt be in store. I think I will bring tissues for me..I think it will be a long day. I am just happy that my other kids will be busy and i will not have to entertain them on top of it all.

So wish me luck for tomorrow, and throw in a quick prayer for Nathan to stay strong!

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!