Monday, September 28, 2009

Big sister helping out with feeding

I thought I would include some pictures of the fun stuff that is happening around our house. Wysdom and Blyss are getting along great.
Wysdom is starting to take some solids like, cereal, fruit and veggies. One thing that Blyss loves to do is to play with Wysdom. Feeding time is no exception...she loves her brother and wants to get involved in whatever he is doing.

The love is mutual, he adores her.

Saturday, September 26, 2009

How is your marriage?...Interesting book!

I have been reading a lot lately. Well truth be told, I don't necessarily read through all of the books but glance through them and read what I think is relevant. Time is of the essence and my late night ng feeds allow me for about an hour and a half of little leisure time while I stay awake and watch Wysdom feed.(reflux:}) I usually blog or read. A couple of weeks ago I was feeling really overwhelmed and there are a couple of things that I do when I feel this way. Firstly I usually blog about it, take a bath and get some new inspiring books to read. So while looking for some new books I came across this one. Married with Special-needs Children. A couple's guide to Keeping Connected.

As I flip through this book I am interested in several of things. Definitely the part about the parents comments about their triumphs and struggles and how they remained strong in their marriage is of a huge interest to me. I am also drawn to how couples make more time for themselves in the midst of a busy demanding schedule. This got me thinking about everyone else out there with a child with special needs and how they are doing in their marriages?

My husband kind of chuckles when he sees this newest book that I have brought home from the library. Really we are not in a bad position right now, but it always pays to be a little proactive don't you think? We don't have a lot of time for ourselves to go out on a date, or even have a non child related conversation. Albiet, we have a 3 year old thrown into the mix that keeps us busy too, so it's not all about Wysdom. It is the combination of them and throw in about 4-6 appointments a week and there you have our agenda. If we keep going as hard as we have for the last 2 years in regards to our schedule and levels of stress it might definitely put some wear and tear on us. Another really interesting thing is that most of the blogs I follow focus on children from birth to about the age of 5 or 6. With the exception of a few, I don't really have much interaction with parents that have children who are in their teens or adulthood. So I have no idea what it is like for parents of a teenager or adult with down syndrome. I wonder if things have settled down and what is life like for them?

Anyways, this is just what is on my mind these days. I would love to hear about your stories and about your marriages and what you have done to make them work in the midst of many appointments and numerous hospital stays and visits?

Saturday, September 19, 2009

Slacking a bit...weekly updates

I have been slacking a bit in regards to updating my blog. I usually update my blog at night while doing Wysdom's ng feeds. It really is my only quiet time. Julian and I share the shifts as they each take an hour plus. I do the 12:00am shift which has me awake from about 12am to 2am on a good night, or 3-4am on a bad night. Lately we have had a couple of bad nights where Wysdom has been extra fussy or having some reflux so I have traded in blogging for sleep and have not posted as often as I would like.

Anyways, where should I begin. I have had a couple of meltdowns over the last couple of weeks. All most all of them have to do with feeding. I find the feeding issue to be such a hard one to deal with. As most of you know, Wysdom has been NG fed since birth. Currently I am working with a feeding team that consists of a dietitian, a SP and an OT. We meet weekly to talk about Wysdom's goals ect. A meeting a couple of weeks ago ended in frustration and tears for me around the fact that I am overwhelmed with trying to feed Wysdom. I don't know if feeding is a very sensitive issue for all moms, but it sure is for me. Could it be that because I am in the field of nutrition, I feel extra frustrated? Maybe! With Blyss I made homemade baby food from millet and quinoa and gave her lots of healthy options. With Wysdom I feel like I am trying my hardest to teach him how to eat cereal and fruits, but it is a slow process. I think part of it is that I feel like I am against a clock and the clock says "teach him now or get a g tube". I know that a g tube is not an awful thing, but to me it just feels like I couldn't do it-feed him. It feels like I have tried all of these months and failed. I have heard of all of these stories about babies having more stamina and eating after OHS and therefore not needing tube feeding. We just can't get there yet! Not only is it that we have to still do tube feedings, but it is the fact that I have to make the decision. I have to decide to do choose another surgery! To be honest this gets to me. Maybe if he hadn't just come out of OHS 5 months ago, it would feel different? Maybe if he didn't seem to get every possible complication in the world, it would feel different? I should feel so strong after going through OHS and this should feel like nothing,,.but it doesn't. I just feel a huge weight on my shoulders that I can't really describe. So this past Tuesday after a lot of thought, research and talking to other moms, we met with a surgeon and have chosen to get a g tube for Wysdom. On our way home after the consultation with the surgeon, I cried. Sometimes I really do feel like I am loosing it. I mean crying about booking a surgery, come on.:) So the date should be in October and I am trying to keep faith that it will be a great thing for Wysdom. One really neat thing that has happened out of all my frustration and tears is that our OT created a slip of paper where I can rate each feed. At the end of the feed I get to circle a number to refer to how well he did. At the end of the month we get to look them over and count them up. She is certain that it will be much more positive that I think. In a way this process has allowed me to move on after each feed by posting a simple comment. Then for each new feed I feel like the slate is wiped clean and we get to start again. I think this is a much more positive spin on feeding then the team just asking me each week how much he ate. I am sure Wysdom can feel the change as well.

On Friday we went the Hospital for Sick Kids to have our plastic surgeon consult. Pretty good news on that front. We have to massage Wysdom's scar on his forehead about 6 times a day. There is a raised ridge in the middle of the scar that has hardened. The plastic surgeon doesn't know if this will go away or not, but right now we have to rub it and hopefully it will flatten out on it's own or we could look at another surgery in the future. However right now they are very pleased with how well the hole closed and how it is healing. So we are hopeful that it will continue to heal well over the next 12 months.

On a home front we are working on trying to sit. Wysdom has been making some progress in this area. He has to really work on his shoulder strength and back strength to be able to sit. So we have been given all these neat and far out toys to help him to learn to put pressure on his arms and to develop his shoulder muscles. One is called the "flyer" Just imagine spinning around on your tummy in a circle! I am sure as he gets older he will love it. Now it's just a little strange. Blyss had taken to becoming his little therapist and advocate. She even had her own question for the surgeon on Tuesday. You could imagine the surgeons surprise when she confidently asked "Will he be able to go on his tummy after the tube?" (meaning g tube). What a loving girl Blyss is with her brother. Wysdom continues to amaze us with all of his smiles, babbling and fancy foot work and toe dexterity!!

Finally last week Julian and I took the kids to a local animal park. As we were walking I was talking to Julian about feeling a bit out of it. Meaning that it felt weird to be out and socializing as we are at home a lot due to the feeds and reflux issues. I have been feeling a little isolated. Wouldn't you know that life provided a scenario in the next few minutes where I get to meet a lovely mom with several children, one who happens to have down syndrome. It was so nice to connect with her and her family just at the moment when I needed it. I don't know what you would call it? Faith, God, Universe, Intention, Law of Attraction...whichever it is I will take it! Just after I wrote this draft, Wysdom had his best feeding time yet!! Now if I could just erase the $100 ticket that I got this morning for failing to stop properly at a stop sign....Ugh!!!

Friday, September 11, 2009

Lemons to Lemonade Award

About a month or so ago I was given my first award from Evelyn at Favored Grace. I am totally thrilled to get this award. I am new to blogging and when I started I was wondering how everyone got these cute little awards. I feel like I have been on a roller coaster of emotions for the last year but I really try hard to be up beat and positive. Yes I know some days that totally isn't me..but I do try. So to me this award represents that some days I am struggling, but other days I can make the best of it and go with the flow and forget all of my worries.

The rules for Lemons to Lemonade award:

  1. Put the logo on your blog or in a post.

  2. Nominate at least 10 blogs that show great attitude/gratitude.

  3. Link to your nominee within your post.

  4. Let the nominees know they are nominated by commenting on their blog.
There are a lot of amazing blogs out there. The blogs I have listed focus on families who have dealt with or are dealing with surgery and numerous hospital visits. I am always in awe of how strong and positive people are when faced with surgery or time in the NICU/PICU. These families show great attitude in difficult, stressful times. Of course this is is near and dear to my heart because...we have spent a lot of time there too.

Here are 10 Blogs that I Nominate:

Our Unexpected Journey
Livin for the Love
The Kang Family
Life As We Know It -
The Life and Times of a Woman on a Mission
The Phamily Blog
Days with Dylan

I am giving the award to the The Stevenson Family , for being so positive and up beat while spending 99 days in the hospital with their beautiful little boy Beau. Not once did I hear them complain. They cherished everyday with their son and took lots of pictures while on their journey.

Wednesday, September 9, 2009

Its all about the eyes...

'It's 3 am and I am up feeding Wysdom so I thought this is a good share some updates. It has been crazy busy as usual. Today we went to an eye appointment. This is our first eye appointment out of a slew of eye tests coming up to see what is causing Wysdom's eyes to cross. They also want to determine the cause to the Nystagmus or shaking of the eyes. We met with a lovely Neuro- Opthamologist today in Stoney Creek, about 1 hour and a bit away from home. (my husband thinks it is funny that I called him "lovely"-okay so he was very nice and good looking. To be honest though, I thought he was lovely because he explained things very well and I love that! ) First just let me say that Wysdom has made us into travellers. This is our 5th hospital that we attend for his care....we are starting to get around. Today Dr. Rodriguez looked at his eyes and concluded that in his opinion the optical nerve looked good. The size and the colour of it looked like what he would expect it to. This is good news. He also got to look at the retina and he thought that it looked okay too. We still have another test for the retina so that is not the final say..but so far it looks good. So he will keep Wysdom's file open, but he thinks that we will not have to see him again. Next stop for Wysdom in regards to his eyes is to get a cat scan. That will be coming up in October. I am so not looking forward to that because they have to put him to sleep for it and they may want to intubate him. Then we have 2 other test for his eyes in the near future before they decide if and when he will need eye surgery. To be honest I was freaking out a bit because....come on really we just got finished with heart surgery a couple of months ago. I innocently thought that things would cool down for a bit before we got thrown back into the fire so to speak. When I heard at our last appointment that Wysdom was going to need eye surgery I felt sick. However today the outlook seems a little better and if eye surgery is needed it may not have to happen until a little later. They are guessing anywhere from 6 months to 2 years and that's just an estimate until we get all of the test results.

Friday, September 4, 2009

African Lion Safari

This is Wysdom and daddy at African Lion Safari. Well last week we took Wysdom out for one of his first outings for the summer. I just got sick of not doing stuff with him because of his heart, reflux and ng. So we did it! We just went. It was an adventure to say the least, since Wysdom is fed by ng tube and has daily reflux issues. We did end up having to turn the back of the van into a make shift feeding area.....But guess what? We managed and had a good time. I think that Wysdom's sister Blyss appreciated the outing too. She had fun with all of the activities, but it was also the first time that we have been out as a family somewhere fun. We usually are at the hospital or one parent goes out with Blyss and the other stays home with Wysdom. We got to take Wysdom into the splash pad and got his feet dipped into the water. Of course I didn't get the pics of this..but my sister did, so I will post these later. Oh it felt good just to get out and do something fun! I am sure Wysdom loved it too. We are trying to venture out more so we will keep you posted...