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).

Updates Part 1 of 3: Blended Diet and New Teeth

Sorry for not posting that often. Things are crazy. Life is such a journey and we seem to be on a couple of waves right now and just hanging on.( Wysdom is good though, it's more family things) Things in the family are pretty busy. My sister is pregnant and due to have a baby any day now, my father ill and my grandmother needs help to. So any spare time is spent pretty quickly. As well I have a different sleeping pattern due to Wysdom. I have kind of lost my wild hours of staying up all night. Yeah for me, I get some sleep... but not so good for the blogging time. 1-3am was my prime time to blog....

I have so many updates to tell you about that I will do it in parts. This week alone we had around 5 appointments and the next two weeks are the same. We went to physio, the ENT, had a hearing test and saw and infant development specialist to name the big ones. However I think the best update is that things are going really well on the blended diet. Wysdom has been on a blended diet for about a month right now. No formula for a month and it has been amazing. We make his own food at home in our Vitamix.I can barely describe the differences because they are so huge. Wysdom is now more than likely eating better than all of us in the entire house. Albeit it is through the tube...but it is better than his Nutren formula. On a given day he is eating things like hemp seeds, flax oil, squash, broccoli, kale, chicken or beef. He has also had molasses, quinoa and many other new foods. He seems to be tolerating everything very well. He rarely is constipated and has maybe thrown up 2 times since we started. Our ND says he looks amazing and is so much more alert and active. Let me tell you active he is...

The difference is so dramatic. He now has lots of hair, can be thrown up and can go on a swing. He seriously has never been on a swing for the first year and a half of his life. With no reflux now he is loving it. He is eating really well and our next step is to see if we can lower the volume of his food and do one entire feed orally.
Yes sometimes the blended food is green, brown, orange or purplish...but he still eats some of it by mouth with some baby cereal and the rest goes in the tube.

In the midst of all of this Wysdom is getting a lot of new teeth, three-five possibly. For sure three that we can see. He is fussing a bit here and there but nothing that doesn't calm down with a little homeopathic's, baby signing time, and occasional Tylenol. We are so thrilled that he is getting teeth.....however his are all different shapes. I honestly don't mind that they are not looking like conventional teeth. The problem is that the two front teeth are really sharp and more like daggers. He cuts his poor little tongue and now likes to keep his tongue up on the roof of his mouth. We are scheduled to go to the dentist at the end of the summer. That is the first appointment for this specialist. The one thing that they did mention is that children with heart conditions need antibiotics when they get dental work. Has anyone heard of this? We are going to be checking with our cardi. So it is great that they are coming in, but oh boy when he gets a hold of you it feels like a knife. I will have to see if I can catch a picture.

So that is the first part of the update. Next to come is info on our ENT and Hearing Test this week and our physio program. For now that's all the time I have. I have to go make some dinner.

Oh yes and on a personal note I am trying a raw food diet for myself this week. So far I am on day 3 of about 85% or more of raw food.I am (slowly working my way) through a raw food course via the Internet. I have plans to start a new foodie blog...right now it's empty though. I will keep you posted. Have a great weekend everyone

The Joy of the Blended Diet.

It has been several weeks and the Blenderized diet seems to really be working for Wysdom. I totally don't want to talk about it too much and jinx it, but I want to also share what we are doing and the changes we have seen, just in case any of you out there are interested. In the last couple of weeks since we have switched from formula to real food we have seen DRAMATIC CHANGES and I mean DRAMATIC. Let me just say Wysdom has been on a swing for the first time in the last couple of weeks. That should give you an indication as to how bad his reflux has been in the past. Right now on the blended real food diet he has not thrown up much. Maybe about once or twice. No more mucus or suctioning from the nose or saline sprays. He is now sleeping mostly in his crib, where prior to he was unable to be in there for more than a few minutes. One of the greatest things was to see his dry skin dissapear and his hair grow like crazy in the last couple of weeks. We not only have the absecne of the reflux and constipation, but we have the bonus of him looking healthy. Wysdom is totally more energized and wanting to interact more. He want and is trying to learn more signs daily and showing us new things all the time. We believe this is a testiment to the blenderized diet and the fact that he must have been feeling not so hot before.

Wysdom is probably (actually he is) eating better than anyone in the family. On an average day we put things like a protein powder, kale, broccoli, blueberries, hemp seeds, quinoa, flax oil, fish oil, peas into our Vitamix Blender. You can see he is eating pretty good. The great news is that right now he is holding his own in the weight department and is at the 50th percentile. He did gain last week, so we were very happy. Right now we plan on continuing on the real food diet and hope to progress in the area of oral eating and drinking.


This week we are headed for a busy schedule and I am sure I will have lots of updates. We have a hearing test, and ENT appointment, physio and several other respite appointments. I will keep you posted.

He's into everything!!

Wysdom is feeling pretty good I think. He is really getting into everything and causing lots of trouble(just kidding). He is in love with his g tube right now and there seems to be no way to hide it from him. I usually yell "Wysdom" when he is playing with the tube or trying to put it in his mouth and I have learned that he likes this reaction because he gets attention. So he is doing it all the time. I swear yesterday he did it about 10 times in a row. Several times successfully opening the tube and the contents all over his chair. I must hold the record for the amount of laundry I do.

Wysdom seems to really trying to communicate. He has always been a huge babbler and likes to make lots of noises and hold a conversation of babbling back and forth. He now is saying mama, dad, Dada, hi, maybe high chair and the start of big boy. He is also singing drink, more, up, and eat. He also understands where his toes are and wiggles them on demand. However I think his all time favorite is to open his own diaper when I ask him if he wants a bath. No, sorry his all time favorite is to PEE on me when I change his diaper and then laugh. Close second is dancing in his chair with Blyss while she performs to the Dancing Wii game. (Who knew that New Kid's on the Block would make a come back)

Although Wysdom is keeping me extra busy, I can't not lie. I love it!!! I love his new found energy. Just love it!!!

There is always drama

I have learned that there can always be some drama when you are trying to advocate for your child and there is someone on the other end who wants to deny you services. Last couple of weeks we have been dealing with some major reflux and sleep apnea. Do you think we could get a sleep study referral. I will not recount all that we went through because I honestly don't have the energy to go back to the anger that I felt. It can be so draining.

Wysdom always has had some apnea in my opinion. For sure he has had reflux and horrible reflux at times that entails throwing up and gagging more than 5 plus times a day. We have never really counted the full amount...on those days it is just to crazy(I am afraid to know the real number, it could be double digits on some days). So a couple of weeks ago(before we started the blenderized diet)Wysdom had another crazy bout where we have to put him on pedialyte. So after this I was bent on getting some further appointments. I know enough from all of you mom's out there that apnea and reflux can lead to permanent damage to the lungs and heart. So I thought I could call up our doctor and as for a referral. I could never have been more wrong.

Long story short, after fighting, arguing and calling around and doing some detective work so to speak. We got in for some preliminary appointments. Wysdom was seen last week and had a neck xray to rule out and obstruction and a referral to our ENT for a sleep study. As well as an EKG to rule out any damage to the heart from the apnea. The crazy thing is this and it's crazy. By the time we had gone through all the drama and argued for days to get an appointment, we had already found our own partial solution. To remove formula from his diet!!!! So NOW we have a very different child on our hands. He is sleeping better and refluxing less. So now we have many appointments for the future to deal with but for now we are rejoicing that the apnea and reflux have calmed down enough that I can go to bed before 3 am and that he can sleep in a bed a little and not just in a bouncy chair.

So in realty it is that the drama has pushed us to take things into our own hands and not depend solely on others for our son's well being. It is the drama that caused us to move to a Blenderized diet of real food that we feed Wysdom via the g tube. It is the drama that has lead us to some real answers. So as much as I hate the drama. .it helped us this time.

His x ray and urine sample came back good. Next we go to the ENT at the end of the month and go from there!!!

It's our 1 year HEART Anniversary.

Yup can you believe it. It is our one year HEART Anniversary. One year ago today Wysdom had open heart surgery for his AVSD. We can not believe that it has been a year. So many things have happened since then. I didn't have a blog at the time of Wysdom's surgery. I can definitely say that Wysdom's surgery experience was the seed that started my blogging. At that time I had no idea of the DS blogging community. Instead I created a care page for Wysdom and journaling about our three week and a half week journey. It was a highly stressful time for us. Wysdom was in Toronto and Blyss stayed with my mom for part of the time at home and part of the time she joined us up at the hospital. To be honest I can't quite put myself back to those days. They seem so hard and unreal to me now. I think you just put yourself in a different mindset and prepare for the battle so to speak. You use all your energy and strength to get through it. For those of you that followed our care pages or followed us on the DS BC boards will remember that this was a really challenging time for us. We had many complications that included his chest being opened up for a second time, problems stabilizing his blood pressure, a huge scar on his forehead(that he still has) from a cpap machine and human error as well as pneumonia and several bacteria infections that originated from the central line. Mmmm let me see, was that it? I think that was it.

Even through all of the heartache and pain that Wysdom went through,we know that we were also truly blessed. We were surrounded by family and friends that supported us and prayed for Wysdom and helped keep our spirits up.(which was hard at times). My family came down to visit and support us and my mom watched Blyss so that we didn't have to worry about her in the hospital. Julian's family supported us with food, company and frequent hospital visits. They were often at our room in Ronald McDonald's feeding us and giving us support. My online supporters listen to my rants and progress reports and lifted us up with comment and poems. For all of this we are greatly appreciative.

I was deeply affected by parents that I met going through similar and different struggles that become our hospital friends. I will never forget two families in particular. Both lost their children while we were there. One from a heart condition and one from cancer. There struggles and faces are embedded in my mind and heart.

We are so proud of Wysdom and today we are really just celebrating that he is here with us and how lucky we are to have him and live in a society where the have the medical knowledge and the skills to repair his heart. His heart is still not perfect and may require more surgery..but right now we don't know and are just so thankful for where we are. We love you Wysdom.

PS. Here is a link to an older post on What I learned from Heart Surgery and also a link to our care pages if anyone wanted to see them. http://4wysdom.blogspot.com/2009/07/our-heart-journey-things-i-learned.html
I can't believe it is still there. My word and journals from a year ago. I just reread them and it is so hard to read. Also I can read all the comments from our supporters. Wow! We really did have a crazy ride.!!!

Children are sick..but good news

Well the kiddo's have been sick for the last three days. It started on Friday with Blyss being tired and lounging around. Then she felt warm. Friday was an already crazy day with me taking my dad to an appointment and several in home appointments for me. While our last therapist was here and working with Wysdom, Blyss threw up all over herself and the couch. The therapist was like " okay I am going to go now". Crazy day.

We tried to keep them apart but then Wysdom has started coughing and throwing up is fully congested. He also started to feel warm. We had to cut all feeds and do the Pedialyte thing again. We know this protocol well and know when to do it. He just starts coughing and is unable to keep his food down and the reflux goes nuts. Then a yellow bright fluid emerges through the tube. So we did his Pedialyte for the night. When this all happened we were starting off on our blenderized diet that I mentioned in the last post. So when we went to start him back on nutren and it didn't work....we just switched over to all blended foods via the tube. This cold has been a blessing in disguise in a way(not that I would ever welcome a cold). It has allowed us to stop all formula because he wasn't tolerating it and try the blended diet. He is tolerating it very well and there is SOOOOOOOOO much less mucus and reflux. I don't even think he has thrown up in the last 24 hours. We are kind of winging it and it is a little stressful as I like to plan and be prepared. So even though he is sick, we may have solved a problem and learned more than we have about Wysdom's digestion and reflux than we ever have.

It has been so crazy I have not even been able to tell you all my drama about trying to get appointments. Anyways I will fill ya in later

Blenderized Diet

Well we did it! Reflux has pushed us over the edge the last month or so. So today we got fed up with Wysdom gagging, throwing up, blowing bubbles out of his nose and being totally unhappy after or around his feeds. So we did it. We purchased a Vitamix and fed Wysdom real food via his g tube. It's called the blenderized diet.

We have been researching this and talking about it for a while. We even pitched it to our dietitian and our pediatrician last week and provided them with a package or information. They agreed that we could try it if we were followed by a dietitian. However when push came to shove I have been on the fence as of late. Don't get me wrong I believe in holistic food and nutrition very strongly, but when it comes to Wysdom I have always been a little apprehensive due to his complex medical history. I never want to put him in any harm. So today Julian gave me the little push to do it. Really we were both so tired of Wysdom's congestion and gagging. So I made the food in our new Vitamix. It's a high speed blender like no other. It's cost more than your average blender I am not going to lie, but it can blend any food into a smooth texture or liquid.It is more than a regular blender. Today he had butternut squash, blueberries, flax oil and a rice protein powder with vitamins. After mixing it it turned blue due to all of the blueberries...and I wasn't so sure I wanted to do it. Julian stepped it up and followed through. Guess what? Wysdom was fine. Really I don't know what I thought would happen. It went so well that we did the following feed of blended food instead of formula.

In order to do this right we have a lot more planning of meals and organization. (which is really hard when you are so busy) However we are going to try to do a blenderized feed or two everyday in hopes of reducing the reflux-/mucus/congestion and constipation cycle that we are in. (Trust me it's not fun). We are also hoping that this will help Wysdom get used to food. We hope that he will digest this food quicker and also get used to burping up real food and recognizing the taste. So wish us luck on our new exciting journey.

P.S. Big thanks to the blenderized diet yahoo group and a very special dietitian who got us started.

Medication change up.

Oh gosh I remember when I first came home from the hospital with Wysdom and how overwhelmed I felt with the list of medications to give him. We had this weird iv sodium bottle that we had to use. I remember they showed that to me about 10 minutes before we left the hospital and the nurse could not even get it right. Oh yes and we also had the ng to contend with. Wow how times have changed. Medication don't seem so hard to do now. Yes changes still take a day or two to get used to, but nothing feels like that first couple of days right out of the hospital. Do you remember those?

Well this week we went to see Wysdom's Pediatrician. We have been having a terrible time with reflux for the last month. We are not sure what has triggered it off again...but it is back. Maybe teething? Maybe constipation? Or something else. So we are changing a few things again in hopes that it calms down. We will continue on our motility med's to speed up digestion and just increase the dose to meet Wysdom's requirements. Then stop the Zantac and instead we are going to try Prevacid( I know many of you mom's mention this one). Next...stop the lactolose because it causes to much gas and switch to PEG. Oh yes and bump his feeds up by 20mls too. Lastly, the one that we are really excited about is adding in a blended diet through the tube. Our pedi approved for us to try the blenderized diet as long as we are followed by our dietician. We are really looking forward to it, but we are not starting that until we get all the other changes down pat. We may have to experiment with the PEG and the dosages a little as we have had several messy diapers and poop up to Wysdom's arm pits. Ha. Really. I am not joking at all.!!!

So with all of these changes we are hoping less constipation, less reflux and thus less congestion. It really makes the day hard when Wysdom can't breath through his nose and is gagging every minute. Try bringing him to a baby group like that. Everyone thinks he is sick. I have to declare that he is healthy as soon as I walk in the room and explain the that it's just reflux!!

Anyways if anyone is using PEG and Prevacid I would love to hear how you like it or not and especially how you are dosing the PEG. Wysdom is 21 pounds and a bit and we are giving him 7 grams which maybe a little much. I guess only time will tell.

Happy Mother's Day

Just wanted to wish all of my friends out there a Happy Mother's Day. Hope you have a great day with your family!!!

Eye patch in the tub??

This was my question to Wysdom today. Do you want to wear your eye patch while your in the tub?? Mmmm...probably not. Okay so that is really not going to work. However while making dinner I actually thought about it for a few minutes. Let's just say that we were pretty busy today. Wysdom had a Baby Group at 9:30am -11:15am. We then did some errands and came home for lunch where we met my Aunt who helped me out by planting some flowers in my backyard. Then off to Blyss's activity group at 2-3pm. Then off to see my dad, mow the lawn for him and then back home. So by the time I got home I had to do dinner, give the children a bath, patch Wysdom's eye for an hour or two and also get him into his stander for a little bit. So I thought it was a really good idea to try and double up on things. Julian and I had a few laughs at the thought of that endeavour.

So yes the patch may not work in the tub...but hey it may work on the drive to a group or while he is in the stander. A little strange but it may work. Wysdom will let me know if he likes it or not...trust me. So in the grand scheme of things we accomplished a lot today. Not everything got done and I am learning that is okay(or at least trying to). We had some fun, socialized and had a little therapy. Check Check and Check.!

Finally some pics..Handsome Boy!!

Forgive me as I have not been keeping up my blog as good as I would like. Still trying to get back into the swing of things and always seem to be busy. Right now it's 3 am and I am monitoring Wysdom's breathing (congestion), so I thought I might as well be productive while I watch Wysdom.

I love these new pics of Wysdom and Blyss. It really shares their special bond and also how big Wysdom is. ENJOY!!










I have many more updates to share that will come in the future. Here is a quick previous. We are enjoying some new baby groups and music therapy. We continue to work on eye patching, oral feeding program from Talk Tools and trying to develop leg strength. I am sure there is more but those are the biggies. We are really busy....But having a blast with Wysdom and Blyss these days. I am sure one day they will form their own little music group...they spend most of their time dancing and swaying to music. Promise to share more soon!!

So sad!!!

I am at a total loss for words. I have been absent from blogging for a couple of weeks. Tonight I just decided to pop into the Down Syndrome blogging community and heard the most devastating news. One of my fellow bloggers eight year old daughter Carly passed away. This is such a shock and is quiet devastating. Many,many times I have been comforted and inspired by Carly's mom as she offered me support and advice and shared her life with me. I am truly heartbroken for her family. I have come to learn after the loss of my mom a couple of months ago and now after Carly's death that life is so fragile, so precious and so unpredictable. Please join me in sending prayers and thoughts to their family at this time.

The Echo Results Are In....

We met with our cardiologist today to get the results of an echo that we had done about a month ago. I will not keep you in suspense. Can I just say how nervous I was in the meeting. I didn't feel nervous before the meeting. But as soon as the cardiologist started to talk. I started to feel anxious and felt myself breathing faster. I felt like what he was saying was right out of Charlie Brown. I couldn't hear clearly for a few seconds. The sound was all distorted and blurry.

The results are good.
Not amazing. But good.
Amazing would be "your son looks great and we don't have to see you again".
We did not get that.
What we got was a solid good for now.

What that means is this that there is some regurgitation or leakage on the left side of the heart and that is minimal or mild(Yeah).And yes this is common to have some mild leakage. However and yes there is a however. There is some leakage on the right side and also some stenosis or narrowing. (okay, so what does that mean?) It means that this is something that we have to watch and monitor. They don't know what will happen. Right now the good part is that Wysdom doesn't have to go in for another 6 months or so. Then after that check up we will do an echo in a years time if all looks good. At that time they will reassess if any medications or surgery is needed. Right now his heart rate is good and therefore his heart is not working extra hard. They are just not sure what will happen as he grows over the year or years. If this same amount of leakage that is on the right now was on the left side of the heart we would have to worry now. However because it is on the right it gives us some time. Let me just say I was so out of it that I jumped in and said to the cardiologist " so what he needs surgery in a year??????!!! He was like "no what I said is that he needs an echo in a year.

So yes I am very happy. However I am not going to lie. I am a little apprehension for the future. I wonder if this is common feeling with other heart mamma's out there. I left feeling good that we have another year or so but I also have this little whisper in the back of my head. Anyways I am sure once I get back into the routine of the next day or so that I will forget about the worry for now and just continue enjoy and love Wysdom. (And Blyss)

Next on our agenda is a MMR shot for Wysdom in the morning, a physical for me. Next on our agenda is to check out why Wysdom had a bad hearing test result earlier in the week. We need to plan to see an ENT again to see if this little guys tubes are still in. Anyways that's something to do next week.............. :) Now off to relax and watch some TV.:)

More than surviving....we're thriving

Okay I don't want to jinx anything, but things have been going pretty well for Wysdom. He has joined his first baby group. I know it's late but this is the first time that he hasn't had any pressing medical issues. We still have many issues and things to do however nothing that prevents us from a little FUN. So Tuesday's we head off to Kid's Ability and join several other moms for some songs, books and puppets and toys. It has only been two weeks, but Wysdom loves it!! This Friday he will also join a music therapy group which we are really excited about.

Physical therapy has been a challenge but we are reaping some of the hard work. Wysdom despite all of his medical issues is continuing to do well. He has now mastered sitting-he did this about a month and half ago. We are really proud of him for this achievement. Can you believe we were once told that they were unsure if he would be able to sit. Although he does not go on his tummy now since the g tube, he has still developed strong muscles in some areas of his body. We are now working on crawling or rocking on all fours (with tummy of the ground). Last week we tried standing for the first time too. The therapist used an apparatus called the "stander". Okay at first I was a little afraid and skeptical. They had this old piece of equipment that look quiet torturous. However it worked out really well and allowed him to start using more of his leg muscles. We are going to focus on his standing at home now. We are so excited to move forward with the next goal and we can tell Wysdom is too.

Somehow withing the last month or so we have also found out the Wysdom is more of a social butterfly than a shy little guy. He has blossomed and is open to so many more people. He is laughing and clapping and spreading lost of joy. One of is favorite things now is to take a car ride. We can see a "Road Trip" in the near future.

We are having a lot of fun and just wanted to share some of the good stuff that happens too. Yes we still are busy with cardiology appointments, eye patching, and feeding issues, but somehow things seem to be progressing.

We have had one big feeding assessment done about 2 weeks ago by Sara from Talk Tools that we are grateful for because now we have a plan for Wysdom's feeding and speech issues. As well we have some big appointments coming up this week too. Our big cardiology appointment is on Thursday and we are going to our first Down Syndrome Clinic in the morning. So yes it is still really busy...but we are more than surviving!

Happy Easter

Hi Everyone. Just wanted to wish everyone a Happy Easter. We are having a good time. Hopefully everyone had lots of fun decorating eggs, doing Easter egg hunts and spending time with your family. We have lots of updates to post about. I will update later in the week all of the great things that Wysdom has been up too. We also have one very important appointment later in the week too. So there is lots to talk about...but so little time:)But now I am off to our third Easter Egg Hunt.

Have a great day everyone!!!

We are still here.

Yes we are still here. Please forgive me I have kind of lost my drive for blogging. Wysdom is doing well. Since the last time I have been here we have seen a new boy arise. He now demands for attention. Anyone who knows Wysdom, know that he is fun loving and full of smiles. However low and behold we have seen a new side of this little man. He has a temper. He has learned to demand what he wants when he wants it. It started by taking a toy away from him when he was apparently not done with it. We are thrilled with his new personality... but boy he is keeping us on our toes.

Medically speaking all is fairly good. We have somehow kept things busy around here but good. Wysdom is still teething so everyday is new and exciting. Believe it or now Wysdom has started his first "baby time group" Yah!!! We have been trying to join this group for the last 3 months. Seriously, that is no joke. We had to keep canceling due to his previous issues.( I don't even want to say the word...so if you are interested in what I am trying to avoid saying....see previous posts). Can I just say that Wysdom behaved himself so well and had a great time. He so deserves some fun and time to hang out with other little ones.

Yes we have been busy. Here a few updates. Today he went to see an ND for the first time. He also got switched into a new car seat that he is loving. He sits in it and looks around and claps away. He got a new formula. He also has two more months to try patching his eye before they consider doing eye surgery( I will have to share that story later). We went to visit his plastic surgeon for his forehead. We all got the stomach flu for a few days. I think that is most of it in a nutshell. We don't get our echo results until the 6ths, so that will be the next big thing.

Friday we have a big day ahead of us. We are meeting with a feeding specialist from the United States that is in Canada for a week and we are hoping for some good support with Wysdom's feeding issues.

Anyways I just wanted to give a quick update and let everyone know that we are okay. I am going to try to get back into the swing of things and be on here more often!!!!

Sedated Echo and Crossed Fingers...and Toes

Today Wysdom had a sedated echo. I can't believe how time has flown by. In a couple of months it will be a year since his heart surgery. There was a leaky valve after his OHS so they are just doing a routine follow up.

Today I spent the time with Blyss while Julian stayed with Wysdom. It actually started the other way around but Wysdom was not having it. Well to be honest, mommy wasn't handling it. As soon as we checked in a student put a bracelet on his arm and for whatever reason(probably because he knew he was at the hospital) He started crying and freaking out. So he was in no mood as we entered the sedation area. It was quiet until we entered and Wysdom continued to scream and I could not for the life of me get him to calm down. Luckily for me after about 15 minutes or so, Julian must have figured this would have happened. Soon enough there was the secretary by my side letting me know that my husband had returned back to the front desk and wanted to see if I needed him to switch(as in I hang out with Blyss and he would stay with Wysdom). I gave her a big YUP, PERFECT TIMING!!!

Julian has a way with Wysdom and I knew that he would be able to calm him down better than me. Since I had driven 2 hours to get to the hospital and was a tad nervous I felt this was a good choice. At medical appointments I feel Julian is the better one in calming Wysdom down sometimes. There are times when my anxiety about the appointment makes me a little nervous, which I am sure Wysdom can feel.

So it all worked out in the end. Blyss had a blast at the hospital. She was able to visit 2 play areas, go to a story time session, pet a huge Saint Bernard and do lots of other fun activities. Wysdom calmed down and the echo was done and they were able to not go near the infected g tube area. So all in all a good day. Now we just wait for the results. We are keeping our fingers crossed and hoping and praying for good news.

What can I say... Some Good and Some UGH!!

Where have we been you ask? Well mommy has been chilling for two weeks glued and I mean glued to the tv watching the Winter Olympics. Of course they were here in Canada, but also they took my mind off things and helped me relax and be somewhere else for a bit. Oh that was such good timing for me to have a distraction.

Time never stops for Wysdom though. Before I get into what has been happening on this end. I must just say that something happened to Wysdom around the time of my mom's funeral. He normally does not like crowds or a lot of new people. He was however so amazingly calm and relaxed with the crowd of new people.(So was Blyss) He sat quietly(well almost..just a few babbles) in the service. I had an escape exit all planned out..but he was good. Afterwards he was good and also at my parents house with constant people he seemed to like it. He never stops amazing us. So many people who know him commented on how well he was doing. Over the next couple of days a few family members heard him say Nana. He has never said that and never has since that day. Amazing.

Now let me get to the updates. Well about 2 days after the funeral things started to get busy again. We had a appointment that I had to keep, unless I wanted to wait 4 months for another date. So we got ready to go to the hospital the night before. We were kind of looking forward to the appointment because it was with a new feeding team that included a GI doc, a dietitian and an OT. Yes we have our own feeding team locally, but this team would look at his feeding or lack there of and give us suggestions and let us know if he needed a swallow study. Low and behold the night before the big appointment...we saw something familiar. Unwanted... But Familiar. Yes a start of another G tube infection. So we called the Pediatric Clinic and made the trek to the hospital for 9am the next morning. The surgeon was in surgery so we were able to go up to see the feeding team really quickly. Wysdom was a trooper he ate a few bites even though we know the tube area was bothering him. I guess the overall outcome from the feeding team was pretty good. We got rid of the 4am feed and we also were not stopped from feeding him oral. So his swallowing was okay. He did good. We still have to find a way to get him to drink, but he likes a small amount of solids so that is very good. On the g tube end though we had to watch him go through another painful cleaning of the area and a swab. This time we were put on a suspension of 2 new antibiotics which we were to do at full dose for the first week and a low dose for 3 weeks.


So in the meantime Wysdom got his first TOOTH!!! What an ordeal that was. I actually truly thought that he had RSV. He was so congested beyond belief. Cranky, coughing and vomiting all the time and I mean every feed. This was how he was when he got RSV at 2 months. We had to run the feeds at a slower pump rate of 90ml per hour and stop it quite often. If was horrible. We actually got our nurse to come in a check his lungs and also took him to an after hours clinic to see if he was okay. He did have a fever, but it was the congestion that freaked us out. Anyways... all is good and a little tooth has peeked out in the bottom at the front and let me tell you. It is SHARP!!!!!!!!!! Wysdom says.."Everyone beware...If I get a hold of you I will bite you and it will hurt"

He has also developed this fun habit at clapping when he hears music and also when he is told that he is a good boy or just when you tell him to clap. It is so adorable. I will have to get it on the camera when I can get a chance.

So now the teething crisis is over. For a couple of days we have had some tummy time and bumbo time. Wysdom has seriously not been on his tummy for months. He is very behind in his gross motor skill due to all of the g tube infections. However this week he surprised us and our therapist with his determination and strength. He is sitting up and rolling over a bit. He has managed to keep some of his strength. His arm strength is not great but his tummy muscles and trunk muscles are getting better.

After a few days of a regular routine.. we have hit another road block. Yup. Tonight we have noticed the FREAKING signs of a _______, _____, blank blank blank g tube infection!!!!!!!!! You get the picture. Ugh. I am going to demand a new tube or for them to send us to another hospital. This is crazy. This is the fourth one since October 31st. It is in the same spot and I am guessing the same internal infection that never goes away!!!

So in the morning we are of to the hospital. I will have to cancel his RSV shot for the second time that I had booked for Friday and more than likely cancel his sedated echo for the second time too. Needless to say that Stress is a word that I am all to familiar with.Today I brought out the lavender oil, the calming tea. It's pretty bad when your three year old knows mommy's favorite line. " I need a vacation":) I know things could be a lot worse, but I am just wanting my big guy to be able to crawl and play on the floor...Is that really to much to ask? I don't' think so!!!

Wysdom's smile is still strong and he even though he is in pain is still such a joyful spirit. Blyss is taking it all in stride and today even pulled out her own stethoscope and doctors binder like the nurse uses when she visits. What a pair I have here.

THANK YOU

Thank you for everyone for your prayers and support during this difficult time. I am overwhelmed by the support and love from everyone. I could list names of people to thank, but I would be afraid that I would leave someone out. So again just a big thanks.

Here is a poem that I wrote for my mom at her funeral that I thought I would share with all of you.

A mother like no other

Lots of people say that they have a “great mother”
However we had a mother, “like no other”
A mother who loved with an open heart
A mother who sacrificed and worked hard for her children
A mother who laughed, danced and sang everyday
A mother who loved her grandchildren so much and proved it !
A mother who loved to garden and go on road trips to the beach every summer
A mother who fought for her children and made lots of sacrifices for them
A mother who’s spirit radiated and was felt by many
A mother who was often told that she was requested to be a “second mother” to all of our friends
A mother who had whip cream and food fights often and we have the pictures to prove it
A mother who loved endlessly,
A mother who cherished her grandchildren every day.
"A mother like no other" who will be missed greatly


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FYI

I shall be returning to the blogging world shortly with some updates on how Wysdom and Blyss are doing. So stay tuned as I try to get back into blogging.

Sad News: My mom lost her battle

I have some sad news. My mom who was battling with pancreatic cancer passed away on Saturday. Her health declined very quickly early last week. Our family is devastated, especially her 8 grandchildren. She stayed at home and passed away in the comfort of her own house surrounded by family.

I was fortunate to see her very often and spend time with her daily. Both my sister and I were able to share some time with her that we will cherish every day.

Her funeral will be held on Wednesday. Thank you everyone for your prayers and support over the last couple of weeks. A special thanks to all of our family members that stayed with her and helped her through out her battle-you know who you are. We could not have done this with out you.

Rest in peace mom. We love you.

My hero's: Wysdom and Mom

Can I just say that Wysdom is my HERO. He has been through a lot in the last month and a half but he just keeps on smiling and fighting his battles as they arrive. I am so proud of him today. We went to the hospital AGAIN( yes I know you must all be so sick of me telling you this) I will tell you because that is all I have to talk about as it is my reality right now. Anyways he had some g tube issues over the weekend and ended up getting some granulation tissue taken care of today. Taken care of sounds much better than burnt of with Silver Nitrate. He handled it like a champ. Oh yes he screamed and cried his head off. I knew this was going to be the case as one mother on the BBC had shared her story with this experience with me. After about five minutes he calmed down and gave us some big smiles and was playing like usual.

He is so strong and has gone through so much and continues to thrive. Even with all of the tube problems we just found out that he now weighs 21 pounds and change. He is growing and gaining weight at a good rate putting him at the 75% on the Down Syndrome Chart. So yes he is my HERO!

This week Wysdom has mastered puckering up and showing me that he can give me a kiss. Since I am part Polish, I say it to him in Polish and he just puckers up and plants one on me. Through all of the trial and tribulations we are having fun with him. We are well into our natural routine that I blogged about earlier. He is taking his probiotics and vitamins well. Really he should have been on this a long time ago, but for whatever reason I felt quite hesitant. I am guessing probably because he has had so many medical issues that I felt afraid but in reality I am sure it is the best for him.

Wysdom also performed on cue today too. We went to visit my mom, who is very ill and is just hanging on right now. She is a sleep for most of the day. However today she was able to see Wysdom smile and wave at her. He even tried to give her a kiss. This was a great joy to me to see her smiling and responding to him. I know that she loved coming to our house to play with him and loves him dearly. Anyways that is about all I can say as this is bringing me to tears.

So the plan is for Wysdom to heal from his g tube and get him back into his activities which he has been banned from for the last month or two. We actually banned him from going on his tummy as to let the tube heal. He still finds his own way once in a while. So hopefully this week he can be free to do whatever.

We are also having a meeting in the morning with our OT, PT and a vendor. We are hoping to find a sleeping arrangement for Wysdom. Something that is elevated but comfy so that he can have a better sleep. Right now he spends most of his time sleeping in his bouncy chair. His crib doesn't do the job. Even with it being elevated it doesn't seem to work for him. His playpen sometimes works if it is not around feeding time. So the poor little guy sleeps in his bouncy chair. So the vendor will be bringing some wedges and sleeping items. Wish us luck!

The plan for me is to spend what little time I have left with my mom. She is a fighter but this battle is a hard one that she is not winning. Everyday right now is such a gift of time. So please keep us in your prayers and thoughts through this difficult time. I also just wanted to send out some love to the several moms that have their little ones in the hospital right now from illness and also for heart surgery. My thoughts and prayers are with you too.

Thanks everyone for your prayers and wishes.

We're going natural

Well we are going "natural" as in seeking natural alternatives to help us out with Wysdom. We had three appointments spread between Monday and Tuesday. Monday we spent the morning with Wysdom's pediatrician. He got all of his usual stuff done and then his round of RSV shots. He also got his g tube peeked at. Tuesday was a bit more packed. We drove out of town to see his ENT and later that same day at the same hospital saw his Pediatric Surgeon. Both appointments turned out to be very short and really did not provide any of the answers that we were looking for.

For the ENT appointment we were getting his ear tubes checked and also asking about what could be done about his poor sleeping patterns at night. We were basically told that nothing really could be done now. Wysdom was already agitated after the ear check so the ENT could not do much at the time. We told him our concerns with Wysdom's breathing and trouble sleeping. He said that really the only option would be surgery to remove the tonsils and adenoids and that is not our best option now as it is quite a hard surgery for little ones his age to go through. The other option was steroid's and he really doesn't believe they are all that effective and absorbed properly. So.....we are left to deal with his breathing issues on our own for now and if it continues to call back. We are guessing that it maybe sleep apnea and a combination of reflux. So we are going to look at the reflux issue and also have a meeting with our OT to look at alternative beds.

Second on our visit for the day was with the g tube DR. He looked at the tube and said he thought it looked good. I asked "At what point do you remove a g tube if there is continual infections?" He said that have rarely ever happened and that is not really an option. So "What can we do to prevent this?" He said to make sure that we don't allow the g tube to be pulled our caught on anything. "I don't allow it and we are very careful" was my reply. He also mentioned that it just could be Wysdom's flora on his skin and that he also may have a weakened immune system.

So here is where the natural part comes in. Julian and I talked and thought that yes maybe his immune system is low and he can't fight of these infections or heal properly. So we started him off on Probiotics and also a vitamin supplement. We are also going to try to get him off some of his pediasure feeds and move into real foods. Not sure how we are going to get there yet. He eats solids pretty well just in small amounts. So we will have to figure out how to make him hungry and lessen his pediasure intake so he can eat solids. All of you that have feeding issues know what I am talking about I am sure and you know that it is not that easy. However we must try. Overall the g tube is looking okay. I asked about using natural oils for the tube and the doctor said I could go ahead and try it. I just have to figure out what it would be. We are more than likely going to go to a ND for Wysdom to help us support him the best we can with the right products.

Not much else to report since this week has been taken up by medical appointments. I did manage to drop and drag Wysdom's favorite toy through the grease in the parking garage. All Julian and I can do is laugh. Poor little ducky!!We are living in a world of "organized chaos" right now and operate like a well oiled team of shift workers. He does his shift with the children while I sleep and vice versa. All in all we are making it work or our system is working for us. We sometimes struggle but we have the best two little motivators here with us.

We are so thankful for both Blyss and Wysdom. Wysdom graced us today with his swinging in his bouncy chair while clapping his hands to the tunes of Black Eyed Peas. Blyss on the other hand entertained her self using our new massage chair that we got for Christmas. When I came back from the kitchen she sat naked and crossed legged in a yoga pose in the massage chair. Let me just say I almost spit out my food. I had to contain my surprise and laughter. She told me she couldn't feel the massage with her clothes on. There is never a dull, boring moment over here:)

The Good, The Bad and The Ugly

Thanks everyone for your comments. They keep me going!! Here are the updates from the last couple of days. There is some good news and not so good news. The good news is that my mom was discharged from the hospital this afternoon sometime. She is outta there!!! Yah and now at home and will have home care come and help her. She still has a tough road ahead but at least she is at home for now and no more procedures at this point.

The bad news is that I didn't get to see her today at all. Why you ask? Because we spent most of the day at the hospital( out of town one) with Wysdom. Last night we noticed that he was getting a puffy spot around his tube AGAIN!! It is in the exact same place which leads me to think that the first infection never truly went away at all. On Thursday we went back to the hospital and talked to another doctor. The g tube area looked fine from a quick glance. However if you touched it or moved around that area Wysdom freaked out. The doctor that we saw was great. He did order an ultrasound for Wysdom which was not fun at all. However he did believe me when I said I thought that there was an infection since Monday and finally gave us a prescription for an antibiotic.

Now for the Ugly. Well by early Friday morning we noticed it gathering into a boil or abscess again. We called our out of town hospital since they were the ones that put it in. We talked to another on call doctor and she was less than helpful. After taking to her, we quickly called her back in less than a couple of minutes and asked her if we should bring him to our local hospital instead. Can you believe that she had the nerve to tell Julian that we disturbed her from her sleep.!!! Julian handled that better than I would have. He said with all due respect how are we supposed to know if you are at the hospital or at home in bed. UGH!!! Anyways I was less than pleased. What's with the hospital's this week. So in the morning we went to Hamilton and they looked at it and immediately decided to cut it open again and drain it. They put some local freezing on it and after a 20 minute wait they went to drain it, however it had already torn open. My poor little man has to go through this again. They don't know why really. Either it's his skin flora or it's rubbing too much. They don't really know for sure. I am very frustrated and don't want him to go through this again. I told the nurse that I can't keep having this happen. He is missing all of his developmental activities like floor time and sitting. He can't do much because he is always healing. Julian and I are now under a bit of pressure we feel to find our own strategy for cleaning the tube and keeping infections away. They say that this is so RARE. Yah right. Not for us. We also feel we have to try to get Wysdom to feed orally as we don't want this tube anymore. This is definitely where I am asking for miracles in my life right now. This g tube is so time consuming right now and we still have eye, ENT, cardio and all other therapy appointments.

So if anyone uses anything really different to wash their g tubes or knows of anyone who does I would be interested. I am going to look into something natural to maybe put in the bath water or something. Who knows? I am not sure yet..but I can't have his tummy splitting open week after week and I can't go back to the NG. So that is where we are at. I know he is really strong and tough but enough is enough.

We got home around 3:00, I called my mom and then went right to bed. My house is a disaster and the food we are eating is not the greatest as we just can't keep up. Through it all though, Wysdom is STILL SMILING AND SPREADING LOVE. Poor Blyss, she has spent the whole week everyday...in the hospital too. She is going to need a special treat for being such a good girl.

My new motto for the week is "Miracles are welcome"

Can you say "Angry and Stressed Out"?

Okay forgive me for I am going to vent.I am drained. I tired and I am not going to lie, I am ANGRY. Angry for so many reasons that I don't think I can list them all. The best way to put it is that I am ANGRY with the medical field. I am angry at how they can treat a human being. I am angry that I had to spend most of my day arguing and fighting for my mom and my son.

Who would have thought that things could get worse than they are? Not me. I thought that things should be looking up a bit. Let me just tell you this week has sucked. It is like I am in a constant boxing match and I continoulsy keep getting knocked down. I stand up and get knocked down. I get up and get another punch and down I go. You get the point. Who would have thought that I would have to bring my son in to the hospital to have his g tube looked at (again!!) and then have to run upstairs to my mom on another floor and deal with her being laid up in the hallway all night after being booted out of her room. This is just crazy.

So let me just recap a bit here. Just after I posted how well things were going with Wysdom we started to notice he was having some pain again with the g tube. We have called the hospital so many times that I am sure we are driving them crazy. He has pain, he's crying and no one really knows what to do. We are being cautios and watching for any sign of infection. Tuesday we had our nurse look at it. The g tube looks good but he still is in pain, so we are thinking that there maybe an infection inside again or that the last one never quite left. So the early part of the day was spent on the phone with doctors trying to decide if there is something wrong or not. So we headed into the hospital after talking to the oncall pediatrician at our local hospital. They loosened it and took x rays to see if it is still in the right placed. So far all is good. The one thing that they could not say is if there is an infection inside. From the outside it looks good...but something is not right on the inside is my guess. It's my mommy intuition.

Then after Wysdom was done we all went upstairs to see my mom who is having a procedure done today. She was admitted on Tuesday afternoon. Let me just say that it has not been a good experience. My sister and I left her at the hospital on Tuesday evening after we got my mom all settled in after intake. My sister got her a phone set up and a TV to pass the time. We unpacked a few of her things and then said our goodbyes. When I called this morning I learned from a patient that "the woman who was here yesterday got moved". No biggy, so I call the floor to get her new extension and find out if she is back from her procedure. Well they inform me that she is no longer in a room and is laying in the hallway!!!. What the >>>>! So I ask to speak to someone who then directs me to someone else and eventually to a Public Relations person. To make a long crappy story short she spent the whole night in the hallway with no phone and no easy access to a washroom. She was left unattended for several hours and we didn't get to talk to her before her surgery. The message that the nurse said she would deliver to my mom to let her know that I called and would be there soon never arrived to her. Can you imagine. To be going in for a procedure that you are already anxious about and then to be put in the hallway with the lights on all night and then not able to see or talk to your family in the morning. Oh how I complained and will complain again. There is much more that goes with this story as far as no food, no help, unsafely and negligent behaviour on behalf of some doctors. However I am sure you get the picture. Anyways in the end some things got sorted out and she finally got a bed a mere 12 hours later. Most of my anger comes from the fact that the procedure that they attempted today should have been done a month ago. I have no medical training but I know that, mmm but who will take responsibility for that?! No one!! Hopefully she is resting through the night and everything is going well.

So I am at home now feeding Wysdom and trying to recover from the last couple of days. I am praying and hoping that the morning will bring better news than today did. I am praying that there is nothing wrong with Wysdom's tube and that I don't have to make an out of town trip to another hospital in the morning and I am praying that my mom is recovering and will get out of the hospital asap. At the end of all this I have to let today's and previous days anger go. So here is what I still am grateful for. I am grateful that my mom made it through today and that the doctor that worked on her was very good. I am also grateful that my husband has been able to to watch Blyss and Wysdom when I take off to the hospital or visit my mom at home. I am grateful that I have wonderful Aunts who come running when I call for help. I am grateful that my husbands family comes down to help every weekend. I am grateful for Wysdom and Blyss. I am grateful that even though we had problems at the hospital that there is one to go to. I am grateful for mornings and fresh starts.

We have one noisy baby!

Wysom has always been pretty vocal. However in the last week he has kicked it up a notch and is making lots of new sounds and babbling all the time. We are having so much fun with him and his noisy self. At times he can make such a loud noise that family members are totally in awe that the noise is coming from our little peanut. (Well actually not so little weighing in at almost 22 pounds). We of course are used to all of his noises, especially early in the morning. It does seem like Wysdom is trying to express himself more and mimic some of the things that we are saying.

I just have to say that we are having so much fun with him right now. He just seems to be thriving this last week. I think it could be also the fact that he is feeling better and has recovered(fingers crossed)from all of his g tube issues.

One thing that he loves doing is demanding for us to pick him up. He uses the sign with such force that you gotta know it's a demand "mommy pick me up now please"
Everyday I am truly in awe at how much joy and love he brings to our lives. It is just so amazing. We are so blessed to have two amazing children. One babbling boy and one Hannah Montana Rock Star.(more about that later)

Random Fun Photos

Here are a few random and I mean random pictures. When I went to upload from my camera I realized that I really haven't taken a lot of pictures in the last couple of weeks. So here is it folks. (As well just to let you know Wysdom's g tube is doing much better-will post more later about this).





Wysdom in his X mas outfit which he wore for about 10 minutes! Too Hot!!




This is us trying to get Wysdom to keep his eye patch on. We thought we would distract him with the hat. Ah nope that didn't work. We are to have it on for 1-2 hours a day. We can make it to about 15 minutes. HE HATES IT!!




I love this shot. Blyss took it. Isn't she an awesome photographer?





Wysdom giving daddy some love before the bath.



Laughs at bath time!




My big girl. Cutie pie.




Trying to do yoga.



My mom at Christmas. Christmas is her birthday. She would probably not like me posting this....but you all need to see who you are praying for.

This weeks adventure.....

As per usual we are crazy busy. A couple of months ago I couldn't imagine being any busier...but we are. Well this week consisted of diarrhea and a couple of call to the hospital on call pediatric surgeon for our big guy. Long story short we are still dealing with the g tube and the rip as well as him having diarrhea for a couple of days from the antibiotic and blood appearing in his g tube. We went to the hospital once since the last post and our Pedi looked at the tube and swabbed it for any other little "germs". Good news is now that it came back negative. Bad news is that we now have some skin growth or granulation tissue. Yes it has all been hard and I hate to see Wysdom cry. He is one tough boy. Right now I still like the g tube better than the ng, but it hasn't been the easiest either.

Wysdom has been a real trooper. He takes it like a big boy. He so wants to get into everything and play and all we are trying to do is keep him still so the g tube area can heal. We did have a nurse come in today and she said to let him do what he wants to do and we will see what happens in the morning. Of course Wysdom had to go full force. I can definitely say that Wysdom has learned some new tricks this week. Since we knew he was in pain, we never let him cry really. We picked him up and cuddled him and try to reposition him. Now that he is feeling a bit better, guess what we are seening? Crying and whining and then when we pick him up....you guessed it! A big smile and no more whines. He wants up all the time now. I just told Julian that we are in big trouble now!!! He is so catered too, especially because we don't want him to activate his strong reflux abilities and throw up everywhere.

This last couple of weeks he has become so much more vocal. Often people wonder who is making all that noise in the background when I am on the phone. Nope it's not Blyss, it's Wysdom. Blyss is handling this all in her own way. She has her own doll with it's own g tube and a doctors kit. She also is awesome at distracting her brother while he is getting things done to his tube that he may not like.

In general we are just staying on top of things. The house is a mess and meals, well let's just say they aren't the greatest these days. Any spare second that I get I try to head over to my moms. My sister and I have been trying to make her healthy food to eat to help get her strength up. We make juices( beet, carrot, celery to name a few). We are also looking into a lot and I mean a lot of alternative options for her care. So at night when I feed Wysdom I would normally blog, but now instead I focus on alternative cancer information. All I can say is that we take it one day at a time. We have my Aunts who are awesome and are helping out a lot with my mom's care. My mom is trying her hardest and so are we to do all that we can for her. When I do have a second to breath, I am totally overwhelmed some times. Thankfully, Julian has been awesome and so supportive. I usually leave him with Blyss and Wysdom for several hours a day. He definitely is letting me have more sleep and trying to keep me upbeat.

Thanks everyone again for your prayers and comments. I am always amazed and overjoyed at having such an awesome blogging community to be connected to and get support from. Even though I don't get on all of your blogs as much, I do think about all of you and miss blogging.

Well this week is going to be a crazy one. We have an:
appointment for the g tube, (out of town)
appointment for his forehead, (out of town)
appointment for his PT,
doctor appointment for mom,
feeding team appointment for Wysdom
and case management meeting for mom

Isn't it crazy how the brain works. I can remember all of the above appointments and dates and times all in my head, but can barely remember how old I am.(got it wrong today when someone asked at the bank). Mmmmm I think I just figured out why I can't remember my age:)

I will try to post some fun photo's soon.

Emergency trip to the hospital

Yup emergency trip to the hospital but we are home now.

We never ever have a dull moment. For the last week Wysdom has been dealing with some tenderness around his g tube and a little discharge. Nothing gross, but something that caused him some mild discomfort. Last night I played with him and had him practice his sitting by putting him on the floor between my legs with his back against my tummy. He played like this for at least 30 minutes or more and maybe had a few seconds of discomfort. I really wasn't pushing him to do it or anything and he seemed to be having fun. What a mistake that was. When I went to change his diaper after, I couldn't believe my eye. There was a big pouch of skin puffed up around the g tube. It was all red and it looked so swollen. Julian and I immediately discussed our options. Go to our local hospital emergency? Not a good idea. Call the hospital where the g tube was put in and where most of our doctors are seemed to be our best option. We contacted the on call pediatric surgeon and explained the situation. The surgeon advised us to wait and come in the morning for 9am to see someone in the Pediatric Clinic as the emergency staff may not know as much about the g tube as the clinic. So after much talk and lots of tears on my part, that is what we decided to do. We almost went to emergency because I didn't want to wait because it looked awful. However Julian talked me into waiting.

In the morning we rushed off to the hospital. Once we got there the game plan was quickly made. They were going to freeze his skin around the g tube and then cut it open to let the puss that had gathered, out. LET ME JUST SAY THAT MY STOMACH TURNED. THIS IS NOT FOR THE WEAK. My poor little man. As if he needs more procedures done to him. I was pretty upset at this because the g tube infections like this are pretty rare. We are so careful with it and wash our hands and sterilize before we go near the tube. Keep in mind this is already our second issue with the g tube since October.Julian being the trooper that he is was nominated by ME to stay with Wysdom, while I entertained Blyss in the hospital for an hour and a half. I just didn't think that I could handle being there today when they cut his skin open. I know I have gone through worse (heart surgery), but just couldn't do it. So when I got back in Wysdom was doing the cry that you do when you are really upset and are trying to catch your breath. He is SUCH A FIGHTER AND TROOPER!! HIS SPIRIT CAN NOT BE BROKEN.

The good news in all of this is that we didn't have to be admitted to the hospital. I had nightmares of this. Also he didn't have to have the tube removed which was another fear of mine. The way it looked with the swelling was very lopsided so we thought it was a structural issue. I am also so thankful for the doctors and my husband too. We are at home now and Wysdom is doing okay. He is fussy and getting his doses of Tempera(oh how I have come to love tempera). Right now he is sleeping peacefully. If all goes well we will go back in a week for a check up. We were supposed to go to the same hospital tomorrow for an ENT appointment but since it is an hour away I cancelled and will rebook it when he is feeling better.

Last night I had to pull out the books that I used to support me when I was in the hospital for Wysdom's heart surgery.It just all is too much, everything happening all at once. I already had a meltdown at my mom's earlier in the day. So I took a peek at these books on spirituality and hard times and read those before bed. Here is a quote that got me through the night. "Sorrow looks back, worry looks around, faith looks up" Anonymous . I think I will start to read some of these books again everyday like I used to do many years ago and hope that they give me some strength.