Two show feature DS issues in their plots this evening.

Did anyone happen to catch Grey's Anatomy or Private Practice this evening. Both episodes had Down syndrome as part of their content. Thursday night is my tv night and low and behold the topic was brought up.

Grey's brought up the topic in the form of prenatal testing.. Two doctor's shared different opinions on this. The one that seemed to be expressed a little more was that a special needs child may have a lot of medical issues. Then they brought in the option of doing a amnio and the risks of it.

The second show which followed and is by the same producer focused more on a teenage girl with Ds who is pregnant. Her mother did not want her daughter to have the child and took her daughter for an abortion. The doctors on this show questioned what to do in this circumstance and if the girl with DS could help parent the child. Ultimately the mother of the girl with DS made the choice for her daughter without telling her that she was going for an abortion.

Just wondering if anyone watched these and what your thoughts are on this? ( Hope my description is clear. I am a little tired.)

I think it is good to see more shows talking about DS on TV. It does bring the topic of genetic testing to the forefront and hopefully makes people thing. However I wished they took a stronger role that it is okay to have a child with DS.

Or some type of information such as a link to a Down Syndrome Association online that is connected to their show. Some parents right now trying to make the decision about their child might have been watching. I was proud and happy that the girl with DS did a good acting job. The more exposure to DS the more we can talk about it and not try to ignore the topic of prenatal testing and termination rates.

What are your thought.

Documentary of Monica and David

Last week I was finally able to watch the documentary called Monica and David which shares the story of 2 adults who fall in love and get married. They also happen to have Down Syndrome.

I am sure most of you have seen the documentary already. However I just wanted to see what your thoughts about this documentary? Did you enjoy it? Was it hard to watch for any of you? Was there something that you didn't like about it?

I personally found it easy to watch. I know some people have a hard time envisioning what their child with Down syndrome will be like when they grow up. I am not one of them. Maybe because we are so busy, I tend to stay in the present or maybe a year or two ahead, but that is about it.

I love the relationship between Monica and David and I loved how they showed them doing their daily routine, taking care of each other, and loving each other. the only thing that maybe bothered me for a second was that the mother was so protective. I felt at one point that she didn't want her child to interact with the public as much. Did any of you pick up on that at all?

Overall I would recommend it to parents of a child with DS, but also for family and friends in our worlds. Maybe one day the medical field and prenatal counselling departments can offer this as a resource for parents hearing about their child's diagnosis. Instead of all the negative information and they could one day say... "Here your copy of a Love Story to view"

Does your child hate the thermometer?

Okay really does your child hate getting their temp taken? Do they go into hysterics when you try to it. I am wondering if you have any neat little tricks that work for you? I am guessing because Wysdom has had a lot of stuff done to him in his short sweet life, that he doesn't care for anything that resembles his past stays at the hospital.

We are in the middle of an illness marathon shall we say. I think that I must have jinxed myself about a month or so ago. I was so proud that we were not sick and doing well. Since Blyss started school this year that was my greatest fear. Although I don't think I have the energy to home school like some of you out there. The thought of illness and germs paired with Wysdom gives me chills.

So when I went and said that comment about being so lucky....low and behold it started. First Wysdom had diarrhea for about a week(talked about this on an earlier blog). Then he got better. Blyss then got diarrhea and was throwing up a day after he finished. Since it presented differently we thought 2 different things so we separated them and masked up(wearing masks was something we learned from early on and use it in the worst circumstances). Then it took a week and she got better. Then I sent her to school and within a day and a half she had something else. A high fever and a cough. This is still going on, well at least the cough.

Then low and behold two days ago Wysdom gets a fever, a g tube infection (possibly) and a cough. So they are still somewhat separated and my husband and I are in survival mode a bit. I seriously have been in the house a lot lately and going a little stir crazy. Of course things could be worse, we all know that. But come on already!!!

This morning in attempts to make Blyss better I made some fresh orange juice and in attempts to make me feel better some kale, green apple, celery juice. You can check it out here on my other blog which I should have called Midnight or late night blogger.:)

Ps. I am still so grateful...just needed to vent as I sit up for about the 10th or maybe even 12th night watching over both of my babies until I wake dear hubby up at 3:00am. Actually I can get a whole lot done at this time it just doesn't help with my
resistance the the morning.

Just Grateful.

This is a cake that Blyss made, iced and decorated today. We made this cake late as both Blyss and Wysdom were sick last week. So we delayed her Valentine's Day activities. She was so proud to do this and was thrilled when I said that I would post it on the blog for her. Oh yes...a belated Valentine's Day to everyone of you.

Then there is Wysdom spreading the love and cheer as usual. Just loving this face.



I am tired from this last week of sickness in our house...but just so grateful for our family. Tonight I worked with Wysdom on trying to stand. I found an interesting way....to put him in front of the T.V. and get him to try to touch the screen while Baby Signing Time is on. For the first time today while I held him up...I saw him move his foot. I can not tell you how great of a moment that was. And oh how he laughed and laughed and laughed. He laughed so hard for a moment I thought he wouldn't be able to stop.

Just Grateful.

Oh gosh....Sick, Sick and Sick

Need I say more. The little ones are sick. First it started with Wysdom and he had some diarrhea. He had no runny nose or anything. So we were just thinking that it was his teeth. Low and behold he is on pedialyte for a couple of days and his food stopped for a day and got dramatically reduced. Finally he starts to get better and we are thrilled. Usually he is so happy and fun and lately he has been just laying around kind of moaning.

Then the day came were it seems to have passed. Both Julian and I are thrilled. Blyss comes home from school and we are all just happy that he is better. Blyss decides to lay down and about half and hour later, she THROWS up. Ughh. It seems to be different than what Wysdom has or had. Julian and I can't believe it. So we sectioned the living room off. Half for Wysdom and half for Blyss. The gloves and all come out and the late late nights continue. Last night I went to bed at 4:30am. Seriously. That was one of my latest nights. Blyss had a bad, bad night. Fever, vomit, and diarrhea. Today she is a bit better but still on the mend. Wysdom is a bit better too.

Here is a shot of Wysdom starting to act like himself. He is pulling all the clothes out of the basket and putting them on the floor. Then he fell asleep for a minute in the pile of clothes. So cute.

At least while I was up last night until 4:30am watching them in the living room.I was able to make some some homemade cereal which I posted at Blyssful Health.

Anyways...on to getting better.

Orthotic's Anyone?

Well it looks like we will be getting Orthotic's for Wysdom. We went to physio today and it seems that he has very loose ankles. (She said a lot more than that and a lot more technical) Anyways,I do know this to be true of course. I see it everyday. Wysdom is really not interested in standing to much. Well he is just starting to become interested. I always think when he is standing for a few seconds that his ankles seem really small and fragile. They also turn or he rotates them and only steps on a part of the foot. So off we go to get some support.

I really have not experience with Orthotics. I have experience with g tubes, but not this. So I am going to have to learn a little bit about them. From what I understand is that there are different types. AFO'S, KAFO'S, SMO'S, KO'S and probably a lot of other options. Our physiotherapist did mention that Wysdom would be getting SMO'S, I believe.

Hey whatever helps him move around seems like a good idea. I actually think that I will be ordering some hip helpers as well. Wysdom is so flexible in his hips and since we have no carpet in our home his legs are spreading everywhere.

If you have any experience in either of these areas I would love to hear from you and how it has helped or what challenges you face with this supports.

New Food Blog

I have been talking about do a lot of little projects from home in my last blog or two. Well one of them is to start up a food blog. I have a background in holistic nutrition and I am currently enrolled in a raw food course. Prior to getting pregnant with Wysdom I was working in a health food store. I have always really loved trying new foods and making smoothies and experimenting. So if any of you DS blogger's are into the same thing or want to join me come visit me at my other blog(still very new) at Blyssful Health

Since this is quiet new the content may change. However I feel like I will be posting some recipes, talking and sharing what we put into Wysdom's blended diet, sharing smoothie recipes and reviewing health food products that I like. As well as sharing where I find a lot of free resources.

Come drop by. I would love to see over there too!

Want a good laugh?

The hazards of tube feeding!!! We often have a mess with tube feeding. However this is the most hilarious thing that has happened.

If you are a tube feeder, you are I am sure familiar with leaks and mess. If you are not let me explain a little. Wysdom is feed partially by a g tube. A peg one to be specific. He loves to play with the tube and since we still have a peg with the connector(a long tube connecting to his g tube) it is really easy for him to reach. Sometimes a kink happens in the tube just like it would in hose. When that happens the food "Reverses" directions and Shoots" out at a high speed and anyone and everything is victim. Usually it is our clothes, the floor, his chair or our hand. However this time it was Julian's eye. Hilarious
(ps. this is my husband taking a picture of himself to capture the moment)

Am I In Trouble Mommy?

If Wysdom was talking a lot I am sure his favorite saying would be "Am I In Trouble Mommy?" Or can I have some Ketchup on these computer wires they are so tasty? Or maybe even "See that bottle of oil...it is not heavy. I can pick it up like a piece of paper!!"

Oh, of course I am just joking with you all. Wysdom is hilarious and he is not in big trouble. He is just into everything that I never thought that he would be into. Since he has his oral aversion or had one I would have never guessed in my wildest dreams that he would be putting raw potatoes in his mouth, or even the bag. Or wires, wires and more wires. Oh yes and saving the best for last is his sister's feet. Yum!!!

I can't blame it solely on Wysdom as to why I have not blogging as much.(I have been busy working on some new ventures that I will share in the future and closing the deal on my parents house). But we sure are busy here chasing our little man who moves around with such speed that it is really remarkable. Gotta love his drive, his energy and his determination. Even though I am joking about him being in trouble...We really do love it!What's is your little one getting into these days?

Luckily he is taking his second power nap of the day, so I write. It must have been all that moving away from daddy this morning at 3am that has gotten him so tired!!!!!!!!!!

The Promise Of A New Year...

I have many goals for 2011. Let me just say that I am pretty happy that 2010 is over with. Last year was a really bad year for me and my family. For Wysdom it was a good one though. So I really want to break from the negative things that happened in 2010(my mother and father passing away) and move into a new fresh year with new hopes and goals. I have always been into writing my new goals for the year. I am not saying that they always work out....but I try. Some of my goals are personal, some family oriented and then some specific ones to each Wysdom and Blyss. Health for the whole family is really important, because when you are not healthy, everything is affected.

My specific goals for Wysdom are pretty clear. To provide him with the best possible environment and resources to develop in his skills. Specifically his gross motor skills and feeding skills. Wysdom has the motivation to do a lot. I would say he has pretty high motivation and he is determined. It is just finding the right way to challenge him. Right now for example he is scooting on his bum and also army crawling on his tummy. For him the challenge is to crawl and stand. If given the right goals and instructions we hope for him to flourish in this area. Secondly, a huge goal is to continue with his feeding plan and try to wean him of his g tube. We currently are in a little bit of a weaning program right now where we are trying to get him to take as much orally as he can. Oh yes, and of course to stay healthy. Oh yes I would also like to have a financial plan set up for Wysdom and Blyss of course.

For me I have several goals. One important one is to somehow continue to blog even in the midst of our chaotic days. I HAD a pretty good following of bloggers. To be honest I have let my blogging slide and I would like to get some of yall back. :)!!!
I also have some specific health goals and personal goals that I will share with you all later that include eating healthy and de-stressing.

I would be really interested in hearing other's goals for the new year for you and your family. What do you plan on working on this year and would you like to join me on my journey of keeping to your goals?

Merry Christmas

Wishing you all the best holiday ever. Merry Christmas to all!!!

We had Christmas Eve with my side of the family this evening. We actually had a pretty good time. Since this is the first Christmas without my mom and dad, I was not sure how I or everyone else would handle it. Thanks to our gracious hosts....we had an enjoyable time together and the children had a blast. Christmas day will be a bit harder as it usually was a huge production and party at my parents house. As well it was/is my mom's Birthday. So we will see what the day brings. I am open to giving it my best shot...

For all of you special mommies out there have a great day. Love ya all. Merry Christmas and Happy Holidays.

Birthday Pics!!

Finally I got a chance to post some birthday pictures. There are more to come. We have been sick for a week and a bit so I am really behind. Enjoy!!!




This is a little glimpse into the last 2 years.


This is the 2nd party that Wysdom had. The first party I have not posted yet. These pics are at Julian's parents house where they held a big party for Wysdom.


I love this one. Not because he is showing his interest in the tech world...but because he is sitting so nicely.




Isn't he getting big!


Of course we can't forget lovely Blyss!

Happy 2nd Birthday Wysdom!!

Can you believe it. Wysdom is two years old. Okay mind you it was more than a few days ago (bad mommy for posting this late. It was actually like 2 weeks ago). Wysdom turned two on the 28th of November. We had a small party for him at our house of just my side of the family. This past weekend on Dec 4th we had another party for him with Julian's family. This year you can really tell that he knows that something is going on. He seemed excited with the decorations and put his little fingers into the cake. Oh yes and of course he was into opening the gifts. Anything with paper is a big hit!!!

At the time of the first party I had lost my digital camera and had to use an older camera that my mom owned. So I am still waiting to develop those. However the good news is that the digital has been found and some new pics should be up soon.

Wysdom is so busy right now that it is hard to even type on the computer. We love it! He is so into everything. We are now attempting to put up the Christmas Tree and see he thinks of that.

So I know this post is short and I haven't been keeping up with blogging as well. However i just wanted to say a big THANK YOU to everyone that came to his parties and who celebrated this huge milestone with us. Thanks for all of your gifts and cards and donations for Wysdom!!!

We Are Still Here!

I am still here. Wysdom is still here!!!I am personally bruised and beaten down by life and the loss of my parents ...but I am still here. I know I have not been on my blog for about 2 months now but I just wanted to thank you all for your comments and prayers that you posted for our family. Special thanks to all of our friends and family that traveled from out of town to come to the funeral. As well as my old school friends that showed up. Thank you. Your support has been great.

Over the last month my sister and I have emptied my parents home and put it up for sale a couple of weeks ago. Now that the house is on the market we have gained some of our own personal time back and thus I have a chance to slowly get back into blogging and catching up on your blogs.

In all this mess and grief that our family is going through with the death of my mom and dad this year...Wysdom still seems to amaze us. Especially in the last 2 months since my dad's death, Wysdom has thrived(I just haven't written about it). Blyss is thriving too. The two biggest things that have happened is that Wysdom has started to become mobile and Blyss started JK.

Wysdom is progressing so much in the last little bit especially in his gross motor development. Yes he is very behind of where he should be....but we don't care. He has had the challenge of this g tube delaying him even more than just his low tone. For s0o many months we have purposely kept him off his tummy due to his numerous g tube infections(as many of you know). We have in a way been stunned by his development in the gross motor arena. Low and behold in the midst of my grief....he thrives.

Imagine a child that spends almost his entire day in a bouncy chair. Just lounging and unsure of his body movements let's say. Then imagine a child that one day decides to flip himself out and start to explore. Start to explore by rolling and sitting. Then bum scooting backwards, and then a little forwards. Then doing some contortions and switching from sitting to tummy by doing the splits. Yes...the PT(physical therapist) or any PT may not like his technique, but everyone loves his motivation, drive and creativity. He is learning so fast everyday and is truly amazing us. He continues to teach himself how to move around. We are thrilled that he is starting to crawl and be mobile. He is starting to become interested in putting pressure on his legs and wanting to stand on our lap. This is huge for us!! With lots of effort and his motivation we hope he will start to stand.

To be honest I have often commented that my father is sending Wysdom some energy or helping him out some how. Truly it was at the sane time as my father's death that Wysdom instantly started moving around. Coincidence or divine intervention? I am thinking divine intervention. Both my parents loved Wysdom beyond words. My dad was really interested in if he was going to be able to move around in his last few months alive. So maybe Wysdom is getting a little help from his two very special angels watching over him now.

On the weekend we were able to go to our third annual Buddy Walk. Pics will follow. I lost my camera so I had to use an emergency disposable so pics will take a little longer to be posted. Anyways, we had a great time and for sure both Wysdom and Blyss had a blast.

Bad News Again!!

I know I haven't been on here for what seems like forever. I just want to let everyone know that Wysdom is doing well. However my father lost his battle with cancer yesterday and has gone to join my mom.

Just wanting to let everyone know that the Funeral will be held at Henry Walser on Saturday at 10:00am. Viewing will be on Friday night at 6-9pm.

Thanks
Sasha

Passed Our Hearing Test

Finally we passed our first hearing test!!! This is a big thing. We have failed numerous tests. Actually way to many to count. We have had tubes in since October last year and still we were failing. We go for the hearing test....back to the ENT....then so on and so on and so on. It has been kind of crazy actually.

This week we finally had a plan developed. Get his ears cleaned and then do a test ASAP so the wax doesn't have a chance to build up. It seemed to work. So Tuesday we drove an hour each way to get Wysdom's ear's cleaned. Fun...NOT. Then today we had the hearing test. Okay all was not perfect with the test. They stick this little thing in his ear and measure the output. The output is still not where it should be. It is suggesting fluid or that the tubes are still somewhat clogged. They really can't say as Wysdom will not allow them to look to closely. MIGHTY BUT STRONG COMES TO MIND!!!.

So part of the test is questionable. However when we moved to the behaviour test he did quiet well and PASSED. He responded well. If you have never done this, it is when they put you in a booth with your child and have speakers making different levels of sound. When Wysdom respond appropriately by turning his head towards the noise...a toy claps or plays the drum. Wysdom turned his head and waved at the toy. So I am happy for the time being. It seems the hearing loss fluctuates due to fluid and not likely a permanent loss.

The audiologist was honest and said we will probably be back for more test with her in the future when language is supposed to develop and she said that we would be followed more closely then. As well we are to keep our already booked appointment for another test in October. So yes I can be happy, but this is an ongoing issue. Honestly I am already aware of that, but I still can be happy with a pass today. Yeah one for WYSDOM!! I am sure many of you have stories to share about your ENT/Tubes or lack of tubes that you could share too.

T21 Travelling Afghan Pics

Guess what we got?


Last week was our scheduled week of no appointments. We had no idea what we were going to do for this week. Usually we are busy with appointment, however one of our therapist said that we should just book a week of "NO APPOINTMENTS". So we did. Then on Friday just before the week started we were blessed with a very special package in the mail. One that we had signed up for a while ago. It was amazing. We were spending a week to ourselves and we got the famous "T21 Travelling Afghan" for a week. Let's just say this was a very good week.


For those of you that have never heard of the Travelling Afghan I urge you to go check it out. It is an amazing project that connects so many families with children with Down Syndrome. We were truly honored to have the afghan in our home knowing that it has been a part of so many other children's lives and families lives. You can feel the energy, the positiveness from it as soon as it arrives at your doorstep. In the journal that accompanies it you can read about all of the other families that have shared in the journey and see cute little photo's of the children along the way. What was especially cool was seeing photo's of other mom's that I know from the DS Blogging Community. Since I live in Canada and may never get over to where they live in the US, it made me feel a lot closer to everyone.

Wysdom and his big sister loved it. We had to keep it under high supervision due to Wysdoms two front teeth. They are very very sharp.( I will have to take a close up shot). They can slice a blanket in seconds and this is one of his favourite things to do. So he could never have it unsupervised or in his grasp for too long. Other than that it went everywhere with us:

A beer and rib festival
Water Park
Animal Park
Marine Land, Niagara Falls
Jazz Festival
and some late night walks and car rides.

So after our week off it goes. We were sad to see it go, but so so HAPPY to be a part of the journey. Here are some of our pics with the afghan. A big thanks to CJ for this amazing project...It made our week very special!!



First night at the beer and rib fest


Trying to take a pic at the carnival and jump out of the way of people


Keeping my babies warm on the way home from Niagara Falls.

Conversation about Baby Signing Time

Okay this is so cute. Julian and I overheard Wysdom and Blyss having a conversation together. It happens to be about Baby Signing Time. Blyss and Wysdom have a great time together everyday, however this was extra special. Blyss was putting in her DVD of Franklin I believe and Wysdom wanted to watch Baby Signing Time. We know this because he calls it " Gunk Gunk Gunk". So picture this. Blyss is putting in the DVD and Wysdom starts saying "Gunk Gunk Gunk". Blyss then responds " No I don't want Gunk, Gunk, Gunk". Wysdom repeats his efforts to get the DVD on by saying " Gunk, Gunk, Gunk". Blyss then responds "No Wysdom, I don't want Gunk, Gunk Gunk. I have done all the learning from Gunk Gunk Gunk" She means that she has learned all of the signs already. And so the conversation goes on and on for a few minutes while they try to figure out what to watch. Julian and I just stand by and listen to the beauty of this moment. So so darn cute. Love it!!!

Please Forgive Me...

I have been absent in the blog world. The truth is this and this is the honest truth. I am lucky if I can get a shower these days, let alone blog. In the last two weeks there has been a birth in the family(not me), a g tube infection, a birthday for Blyss, a handful or more of medical appointments for Wysdom and lots of family stuff that I can't quite get into that has taken up a heap of time. So you must forgive me for not keeping you up to date or checking in on your blogs. Everyday I have the intention to blog...but sleep seems to be the priority.

Wysdom is now on his 6th g tube infection. We are dealing with it as this has been our norm for a bit. We were kind of thrown off guard because he was doing so well. We were taken back and a little surprised. Since being on the blended diet, Wysdom has been doing really well. He has become so active and wants to slide or attempt a crawling motion. Normally we try to avoid this type of activity(due to his g tube). However he just kept rolling over. In a way it is great...I mean who wouldn't want to have their little one learn to crawl and do lots of physical therapy type of moves. But the g tube is not loving it and proved it with a nasty mess of an infection.

On a good note Wysdom is doing really well orally. He is eating now more than he ever has. Two weeks ago for whatever reason I started to count how many spoons of food he ate. We used to do this in the start of oral motor therapy, but then I found it set us up for a disappointment so we stopped. However last week when we just randomly tried to see how much he would eat....HE SHOCKED US!!! He ate 50 spoons of the blended food= about 100mls. For the last week or so we have tried to feed him at each feed and he is doing amazingly well. He has eaten 150mls at one sitting. So we have been able to not use the tube for a feed or two in a row. It is great to see him doing so well. It is still quite random and we haven't formulated a strategic plan....but everyone must know that we would love to move away from the g tube eventually.

Crawling and standing need a lot of work still. Due to the g tube we have made the tummy time off limits basically for the last 6 months. So he really doesn't have the same opportunity to use his muscles. We are trying a stander and doing the rock on hands and knees but we need a LOT....of work here.

Mmmm...let me see what else? We have been blessed not to have any reflux for the last little bit and therefore we have been able to do more fun things like swings and more outdoor activities.

At our last eye appointment we were told to switch our patching of just the left eye to both eyes. This is a good thing. Wysdom is using both of his eyes now and alternating from one to the other. So we have another appointment in a couple of months to see if he will be a candidate for surgery. Right now we patch for 45 minutes once a day and alternate eyes.(or at least this is what we should be doing-Wysdom hates the patch)

Hearing is still in question. We have had a hearing test recently and he failed the test. He did respond to some of the behavioural test but the response in his ears when tested showed that the tubes were not working. So we went to the ENT and the new plan is to try to clean his ears out and take some wax out and then in the next day go for a hearing test. This will give us the most accurate test results as the wax should not be a factor. In my heart I totally believe that he can hear. I am not saying 100 percent, but he can hear. He responds to sounds, songs and actions.

I think that is about it for now. I really truly have been missing you all and blogging, but it just has been really hard to get the time. I should be blogging a bit more as we have a week of no appointments coming up and plan to do some fun outings. We also got the Travelling Afghan this week so this should be a lot of fun taking it with us everywhere.

Oh yes I plan on sharing that I have been on a RAW challenge for the last month that I want to share about too. Anyways that is it for now..hope to catch up on all your blogs soon.

You won't believe what he said !!!!

I just have to share because I am so excited and proud. Just a few minutes ago Wysdom amazed us. He said "I Love You". I say this to him all the time in the hopes that he would pick it up. Luckily, Julian and I were both there so we know that we both heard it. And if we weren't blown away and overjoyed enough...he said it again. Wow, we are so blessed. He sure knows how to melt a mamma's heart.(not like it wasn't melted already though).