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.