Friday, February 25, 2011

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.

Wednesday, February 23, 2011

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"

Tuesday, February 22, 2011

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.

Wednesday, February 16, 2011

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 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.

Tuesday, February 8, 2011

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.

Wednesday, February 2, 2011

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.