Saturday, November 28, 2009

Happy First Birthday Wysdom!!

Happy Birthday Wysdom. I can't believe you are one. Here is a poem that I wrote for Wysdom. I am finding it very hard to summarize this past year and what we have been through. I am truly overwhelmed and so grateful to have Wysdom as part of my life. I plan on posting all weekend what this day means to me. I am hoping to post some pictures later of when Wysdom was first born. If I can figure out how, I will post some video's too. For now Happy Birthday Wysdom. We love you!!

My heart is bursting with love for you
I can't believe you are one year old today
One year ago I saw you for the first time
You were so tiny and perfect
You were called feisty right from the start
Quickly you found a place in my heart

My heart grows with love for you everyday
For all that you have given to me
All that you have been through
I can not imagine my life without you
You are a precious gift for my soul

My heart has been given a chance to grow
Though there are struggles that we face
We have won several battles already
You have the scars to show it
But your smile remains strong

My heart loves you always
With a glance of an eye, you warm my heart
I will fight for you everyday
You were meant to be here
My precious GIFT

Friday, November 27, 2009

Happy Thanksgiving to you.

Just wanted to say a big Happy Thanksgiving to all of my American blogging friends. Hope you all have a great holiday with your families. I am in Canada so we had our Thanksgiving weekend a little while ago. I am thankful for all of you. Now go enjoy your turkey, pumpkin pies and your little cuties.

Wednesday, November 25, 2009

Christmas Crafts

Blyss and I worked on some Christmas time crafts this week. Blyss loves doing crafts. She also loves Christmas and last year I didn't get to celebrate it with her as I would have liked to because I was in the hospital with Wysdom. So this year I have a feeling we will be going all out. We are putting up our tree in the morning. Here are some pictures of our finished products.

Monday, November 23, 2009

Gotta Love Family

Today Julian's parents came for a visit. They live about and hour and a half away and have been coming down pretty much every Sunday since Wysdom was born. They come with dinner prepared and provide Julian and I with some rest and assistance. Of course they come to see little Wysdom and Blyss.We are so blessed to have family. They are able to catch up on Wysdom's progress and spend some time with Blyss. Not only do they cook dinner, but they clean too. They usually do some laundry like they did this evening. Clean up the big girls messy room and sweep the floors. Julian's dad does any handy work around the house that needs to be done. This is all such a huge gift for us as we are usually pretty busy with Wysdom and all the daily chores and duties pile up.

Julian's Mom(this is an older picture)

Julian's Aunt

Since it is Wysdom's first Birthday at the end of the week I have also been thinking back over the last year. Julian's parents and family have supported us through out the entire year and pregnancy. My sister in laws, Julian's mom and Aunt came one day when I was pregnant and totally decorated Wysdom's room. They brought everything and I mean everything. Curtains, small area carpet, a lamp, a crib set and clothes. My sister in law brought me her change table(awesome one because it's high enough for us-we are both tall) and also curtains and a bed skirt for the crib. My other sister in law lent me her travelling breat pump set for the year so that I could pump breast milk for Wysdom. Julian's Uncle who comes down every Sunday to help with the food, but who also cleans a lot for me. His family came to visit us when Wysdom was born and we stayed at the RMH over Christmas and brought us dinner and gift so we could feel like we were celebrating Christmas. They came to Sick Kid's Hospital many times when he had his open heart surgery. They have told everyone at their church about Wysdom and we recieve lots of support and prayers from everyone in their congregation. They even have done a video montage of Wysdom on the big screen at their church( we haven't seen it yet but will post it once we get a copy)They help entertain Blyss when I am just so burnt out. This evening they did all of the wonder full things that they always do and I am so truly blessed to have them as part of my life.

Then there is my parents.They live in the same city as we do. They have provided amazing support as well. Everything from sending over food and doing my groceries shopping. My dad cooks a big pot of rice and peas every Sunday and sends it over.
She has been able to watch and take care of Blyss each time Wysdom is in the hospital. I am sure she never thought that he would be in the hospital for the first two months of his life. So she watched Blyss that entire time and that is not an easy job when you have rheumatoid arthritis and have an active child to watch. She also is on call for whenever I need to go to medical appointments(which we all know is often). As well on days when I just need some help she stops by. My sister helps with Blyss too and takes care of her when I am away by helping my mom.

My parents( a month before the g tube)

My mom and Wysdom a day or two after he was born

So I just wanted to share a big THANK YOU for all the help and support that we have been given over the year. We love you all and we could NOT imagine being on this journey without all of their help, love and many prayers. We know you all have been touched by Wysdom's presence and love him dearly.

Saturday, November 21, 2009

Therapy updates and a big old wave!

For the last week I have been trying to teach Wysdom how to wave at me. Today, when I came home, unpacked the groceries and briefly said "hi" to him. I failed to give him his regular greeting which is a big kiss and smooch on the face. However when I turned around to look at him, he was all twisted in his bouncy chair looking at me and WAVING!!! Oh how excited I was and still am!!! He is really trying to communicate. I have to go pick up some books or Cd's on signing. I only use one or two signs now with him. I think he looks ready to start some more.

Therapy updates
On another note early in the week I was feeling kind of upset after a couple of therapy session. It seems that sometimes the therapist just don't think Wysdom is ready for or can do certain things. I beg to differ of course, but sometimes it just seems like a little bit of a tug of war or uphill battle. Don't get me wrong the therapist are okay but have different opinions and probably some preconceived ideas on what Wysdom can and can't do. So this week I had to advocate on Wysdom's behalf and let the therapist know that he is ready to start to drink. He wants to drink, he is eager to drink. They thought that he is not developmentally ready to do so. So I challenged them. I mean come on now, it's not an issue of aspiration or anything. It's just that's their opinion and guess what? Wysdom sure did show them. Yes it was his first time drinking out of a cup, but he managed and surprised them!!

Next we moved onto our PT appointment where she didn't seem optimistic that Wysdom would master sitting. Yes I know he is behind in that area, but it really ticked me off that I got that vibe from her. I came out and asked her what she thought about him being able to sit and she kind of hesitated and didn't say to much. Which in reality said a lot! So my husband and I talked it over and just have made up our own plan of what we believe and also what we have to do in the area of feeding and sitting. We all have lots of work ahead of us, but for now we are enjoying Wysdom. He will be one year old next week and we are trying to decide what to do for his birthday next week.

Wednesday, November 18, 2009

Eye clinic and other updates

Today we went to the eye clinic at the Hospital For Sick Kids. Wysdom has been having several tests done to see if he will need eye surgery in the future or not. Today was our last test before we get our answers. The test that was done today is called a VEP or Visual Evoked Potential. It is essentially visual electrophysiology. What this really means is that they hook you up to a lot of electrodes and then let you watch a computer screen with a bunch of images on it. They record and analyze the data on how you respond to moving patterns that are shown.

Only one parent was allowed to go in so Julian went in with Wysdom, while Blyss and I hung out and tried not to get any germs:). The test went well in that Wysdom was calm and watched the screen which showed patterns and cartoons.He sits with Julian sometimes when he works on the computer so I was sure he would love this test and it would be easy for him. He was done in 20 minutes-yeah. The driving to and from the hospital was not a "yeah" for me as it took a total of about 3 and a half to 4 hours to get there and back. To say the least I am busted tired since I drove. I always drive as I think Julian can handle Wysdom better in the car if his reflux kicks in, which it did many times today. We are praying for good results from all of the eye tests and hoping for the best. To be honest right now I am so not into another surgery as I need some time to recharge my batteries so to speak. Anyways hoping for good results. THINK POSITIVE, GOOD THOUGHTS, THINK POSITIVE..... You get the picture.

As far as the g tube and the reflux goes we still have some issues. The g tube is healing a lot better than before. The reflux on the other hand is still pretty violent and constant. It doesn't help now that he has a cold with lots of mucus. We are using reflux meds that speed up his metabolism and help with the acid. A big culprit I believe is gas and constipation. So I am researching natural things that can be done and am considering going to a naturopath for some help. I do have a background in nutrition(almost, I haven't quite completed the program yet..but maybe one day). I will be looking at a combination of things like increasing fibre, using magnesium and some teas that have been recommended. Last night was another bad night, but not as bad as the weekend. Julian and I had a few hours sleep each and changed off like shift workers. Wysdom cried from the gas again and was in some severe pain however it only lasted for a short while and one dose of Tylenol helped.

Wysdom has already found a way to entertain himself with the g tube. This is and will be an issue. I can feel it. He was so used to the ng that he used to like holding it and playing with the feeding pump tube. It was almost like a comfort thing to him. I think he liked the feel in his hands(not his nose). Well for the last couple of days we have caught him playing with the end of the tube. He is creative in that he uses his hands and also his feet. He rubs his little feet together and catches the tube between his toes and pulls. The nurse has assured me that this g tube is supposed to be hard to pull out-so we are keeping our fingers crossed. He also likes to play with the tube at the actual insertion spot. So far he just holds onto it. What a little trouble maker:)... Oh how I love this little guy, he really is much fun and keeps us on our toes.

Monday, November 16, 2009

I can far so good

Wysdom seems to be doing a lot better. After I wrote the post we tried some of the suggestions that everyone gave us about venting and taking some of the pressure off of his stomach. I left the tube open for a while and he seemed to be more comfortable. We also took milk out of his stomach when he was uncomfortable. To me it seems like he takes a long time to digest it. We were able to cut back on the Tylenol and Advil and then we restarted feeds. We did his first feed at 30mls and hour. It went real slow working him up to his regular feeds of 135mls...but we did it by the end of Saturday. Albeit it is at a different rate that we kept adjusting. We started at 30 mls and worked our way up. He is now at about 120mls per hour and we will still try to move that up to his regular of 135 per hour. We also got a chance to talk to a doctor on call who verbally increased his doses of reflux meds to his current rate. So we upped those as soon as possible.

What a crazy 2 days that was. We really are not sure what happened but we are guessing two things. We think that he may have been really constipated and as mentioned by some of you, that the milk had no where to go except up and out. The second thing was the piece of whatever it was that we found in his milk that he threw up. It was kind of crunchy and sharp and maybe that was stuck in his throat and kept him gagging and clearing his throat. We normally do have lots of reflux but he doesn't usually clear his throat like that. Once the foreign substance came out his gagging reduced. We are not sure what it is. We watch him like a hawk because of his reflux so we don't think it's something he swallowed. My mom thought it resembled crunchy blood? Who knows? I thought maybe a part of the g tube? Anyways he also ended up pooping several times later that day so he got some relief. All of the intense gas that he had as well has reduced. The gas was so strong that it would push the pump out of the g tube. We are using the peg tube right now and he hasn't had a fundo but we still need to vent quite a bit. I am going to call our surgeon and talk to him about this. Right after surgery we had talked to him about the hopes that the g tube would reduce the reflux and he stated sometimes it increases it. Well wouldn't you know it? I think it has. He is supposed to be one of the top surgeons.

I have to thank all of you for your thoughts and prayers and my mom who is sick herself with some undiagnosed pain but came over to do all my dishes and clean my house and also take Blyss out for a few hours. I am so thankful for all you that think of Wysdom and send good thoughts and energy our way.

Wysdom has seemed to catch the cold that Blyss has, but it looks manageable right now. I will keep you posted if anything changes. Ah....I can breath now!!! What drama. Hoping for a drama free week. Next weekend is he is one year old and I hope that he is feeling good by then.

Saturday, November 14, 2009

I think I am going to freak out one of these days.

Okay I am going to freak out soon!! Okay really I do not like to focus on the negative too much and like to be more optimistic, but oh my gosh lately life is hitting me with a ton of bricks. We are on a rocky road to say the least. Sorry for the long ramble. I am exhausted and frustrated and have had an hour sleep.

Blyss picked up bad cold sometime early this week. (Probably when the girl in her gym class coughed on her as her mother sat beside her and watched. Ugh that's a whole other story) So we have been trying to keep Blyss our 3 year old away from her favorite brother. She luckily does not have H1N1 or anything like that and seems to be weathering the storm with a little cough and some congestion. Julian and I have been so proud of our efforts tom keep the cold from Wysdom. Then just as Blyss starts to feel better, guess what?

Well Wysdom didn't catch the cold but is struggling with other issues. Yesterday
he was fine in the day. I fed him a bowl of food and he ate really well. Around his 4pm feed he started to spit up and choke a little. This is somewhat his normal as he has reflux. He kept coughing and crying so we stopped the feed and he threw up the rest. Usually we just stop and move onto the next feed. Well this happened for the next 3 feeds. So that means that he did not have any food from 4 pm really on. My husband did the 12am feed and he couldn't keep that down either. I went to bed at 11:30 and to up at 12:00am. I then sat with Wysdom while he screamed his head off for the rest of the night. Every time I moved him or layed him down he cried and went into a fit where he became so upset and full of gas. At 2:00am we started to really panic and called our on call nursing company. We spoke to a nurse and mention our concerns about him not being able to tolerate any food and also when we tried it sounded like he was aspirating which does not really happen for him. She suggested we do no food for the night and that she would show up at 8:00am. She also suggested to use a suppository( well that didn't go well or work) To be honest we don't know what the #### was or is still going on. He is pushing like he is constipated, crying hysterically and throwing up non stop. I stayed up all night with him and then slept for an hour before the nurse came.

When our nurse came his heart rate was up in the 180's and his 02 sats were low. He cried like I have never seen him cry. Last week was nothing to this. He started to get so overworked and couldn't catch his breath. She suggested that we alternate between Tylenol and Advil and that if we could not get any food to stay down to go into the hospital!!!!!!!!!!!! So needless to say that I was crying and freaking out...we just got outta there. Meanwhile Blyss is freaking out to because her brother is screaming. So luckily we got half a feed into him that took about 3 hours to do. He didn't poop, but he has soooo much gas. We have heard that venting the tube will help but it seems to be like a cycle. He cries, we vent, he cries we vent more..... I am so confused as to what it is. While all of this is going on we called to hospitals and talked to both of the on call doctors and they suggested that we continue to do what we are doing. we are finishing the feed the feeding tube attachment from the pump pops off on it's own I guess from gas. All the milk pours onto the floor and in the middle of the milk is some foreign object. Not to big,red or brown maybe a sticker maybe a piece of plastic or something. Shortly after this Wysdom stops his cat like clearing of his throat. Julian are not sure if the g tube has broken inside or if he ate something he shouldn't have but we are happy he is calm. Unfortunately all day he has continued to be fussy and require venting and drugs.

So that is where we are at right now. We are runnin his feeds over 2 hours and he is having trouble keepin that down. Please send us good thoughts and pray that we get over this and that my little man can just be himself and not in pain. Any G TUBE Mama's have any tips on venting or why this is occurring? Any Mama's that deal with constipation in their little ones, can you shed some light? Or could this be teething too? Or everything at once. We are so lost right now.... Any help would be great. I am really starting to wonder what the heck is going on lately with our luck??? So right now we are just waiting to see how each feed goes and to see if we need to bring him into the hospital. Ugh!!!!!!!!!!! I so don't want to go back, but I don't know what else to do for him?! Next week is packed with appointments for his eyes, his hearing, his feeding team and his physio and I am just feeling so overwhelmed with him being sick. I just want my happy little man back.

Wednesday, November 11, 2009

Celebrate Being: Our Buddy Walk

We went to our local Buddy Walk on the weekend.

This was our second walk. We went last year when I was pregnant. It was a last minute thing last year as I was really nervous and not in the head space to go since I was having a very hard pregnancy with some complications. I thought that it would be too much for me last year, but it ended up being what I needed. Support and smiling faces. I fell in love with their name and idea of the Canadian Down Syndrome Campaign called " Celebrate Being".

This year it was also a very last minute thing because of Wysdom's g tube. We weren't sure if he was going to be up for it. As it turns out...he was up for it. So at the last minute we grabbed our stuff, my mom and sister and headed off for the walk. It was such a beautiful day. Although we didn't stay long, it was so nice to do the walk and feel like part of our local community. Since Wysdom has kept us busy we haven't connected that much with our local community as of yet. So it was nice to be able to go out and do just that. Here are a few pictures from the day.

As you can see, Wysdom is interested in his hands and not smiling for the camera.

It was so last minute that we ended up at the end of the walk.

This is Wysdom enjoying the fresh air.

This is my sister, mom, niece and Blyss just minutes before the walk.

Next year our goal is to be prepared, have more family members and maybe even do up some t-shirts.

Friday, November 6, 2009

A Little Glitch with the g tube.

Things have been a little crazy around here and I haven't gotten a chance to update. We got home on Monday from the hospital.

Tuesday we went and got some blood work done for Wysdom and he got his H1N1 shot. I must say that it was pretty uneventful. We were able to take him into the clinic and get it done right away.He didn't have any fever or reactions and we are so thankful for that. The clinic treats children with high needs so there was no line or chaos. When we got home on Tuesday we had a home care nurse come and visit us and order some supplies for us. She thought that the g tube site looked a little gunky or full of leakage and pus. Yup it didn't look to good. I have never seen one before in person, but I felt that it looked a little painful. Wysdom would scream his head off every time we cleaned it. Oh how my heart hurt this week just hearing him in so much pain. My stomach would start to knot at the thought of cleaning it and I was worried if I was doing it right. So I was very happy to have the nurses opinion.

So Wednesday we continued to clean the wound as best as we could. It was very difficult to clean as the g tube was so tight against the skin. We were given all these instructions to clean underneath the tube and rotate the bar,but we were having a hard time. Later in the the day we had our feeding team come in to weigh Wysdom and to see how he is doing. His weight is 19 pounds and he actually gained some through the week in the hospital. He has started to babble more, respond to more noises and open his mouth for food. Ah what a great site that is. It's so encouraging to see now that the ng is out.

Thursday our nurse came back to see how the g tube wound was doing and she thought that something was not right. She thought that it was still to tight and wanted us to go back to the hospital for them to check it out. That's right! Can you believe it. So we called and got an appointment for Friday morning. She was also concerned with how much pain Wysdom was in when she went near the tube. I was also alarmed and emotionally drained from all of the pain he was in and screaming he was doing.

Today(Friday) we headed back to the HOSPITAL. The nurse and the surgeon decided that the tube was to tight. Unfortunately since it has been so tight we have not been able to clean under the t bar and the bad news is that the pressure of it cut his wound open more.!!!!!!!!!!!!! So now there is a tear. Oh my poor little man. The surgeon says that this can happen and that now we just have to wait to see if it will heal. So we headed home a little disappointed that this happened. Blyss can literally not take her brother screaming anymore and has to be removed from the area while his dressing gets change. We tried to do this at the start but both my husband and I were working on Wysdom together. The good news in all of this is that his eating and babbling seem to be thriving in the absence of the ng. As well for the first time tonight he didn't freak out and scream when we cleaned the g tube. So that was encouraging and such a relief to me.

Sorry for the long blog. All I can say that it is sure hard sometimes to be a mom to a medically fragile child. It's not that you don't love them, because I love him more everyday. It's just that I hate seeing him in pain. So I am praying that he has better days ahead. Boy Wysdom, you are one tough boy.

Monday, November 2, 2009


Pre Surgery

Daddy hanging out with the big boy.

Mommy looking exhausted and frazzled minutes before handing her baby over to the nurse. Yup! I broke down and cried.

Post Surgery
Isn't he so handsome without that tube!!!

Blyss visiting on Halloween. Boy did she every get dolled up by Nana. Nail polish and all. She made a lot of people smile by just showing up at the hospital in her outfit!!

Yup!!! We made it home. We got home just around 5:30 this evening. We are truly so happy to be home. We are all a little giggly and amazed!! This surgery went really well and everything went as planned even though we were surrounded by chaos around us. Bed shortages and H1N1 surrounded us everywhere.

Wysdom looks so handsome and happy without his ng tube. I think it will really sink in, in a couple of days when we really realize how easy it it going to be without the stethoscope, tape and daily worry. Wysdom is thriving and playing and has been a great little boy. He was a little fussy at times and cranky as to be expected, but has returned to his babbling, playing and smiling.

I am always humbled and aware that my situation is not bad at all. I am always touched by the people around me in the hospital going through such horrible times. I am always a little emotional when I meet other families who are going through such terrible ordeals and struggles. We had 4 different roommates which included a hernia operation, a ruptured appendix, a back surgery and a car accident. As well there was a horrific car accident down the hall and a teenage girl who was screaming in pain all day and night-I never got to connect with her or her family but my prayers go out to them.

When we got home today from the hospital my copy of GIFTS 2 had finally arrived. I am so excited!!!

I must say thank you for all of your prayers. I am so honored to be part of this blogging community that has proved me with such support, love and hope. I really didn't get to blog at the hospital because we couldn't get connected so I had to wait until now. Well I am off to bed, I am exhausted. Blyss kept us SO SO busy at the hospital getting into everything. Sleep, ha! Rest, ha! What's that? Iam looking forward to catching up on everyones posts and taking some new photo's of Wysdom. However that will have to wait a bit. Off for a H1N1 shot in the morning and some blood work for the big guy!!