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.!