Pink Pointe Shoes

In Response To My Facebook Status

2012-01-31T13:24:00.003-04:00

I updated that due to lack of sleep I have the Casino taxi number stuck in my head and repeating over and over and over and over again....

I did have a few people ask me what I was talking about (people whom didn't grow up around here in the 80s and/or haven't seen Trailer Park Boys). I decided to turn to YouTube and actually found the commercial.

Enjoy!

Believe it or not this jingle ran on CBC just a few nights ago. I was busy messing with Ben's feeding pump so I didn't notice if it was the same commercial or not. This is probably why I have been singing it (in my head) NON stop lol.

7 Days....

2012-01-30T21:23:00.000-04:00

We have the date. Ben's surgery is in 7 days.

The weekend was painfully slow and today has been a never ending stream of faces. Most of the information was information we have heard before...and the normal interruptions for vital checks and feedings.

Dr Hong was in and took some pictures of Ben to get ready for next Monday. It's really happening. In 7 days Ben starts his journey. I can't even imagine what he is going to go through or how scary it must be when you are that small and don't really know what is going on and why everything is happening. To see him be able to breathe comfortably and not struggle will be so wonderful, it is just everything between now and then will be hard.

I think both Ashley and I are running on empty. This has been emotionally, physically, psychologically and financially draining. I can't help but wonder how we will find the strength to keep going and provide Ben with the support he needs, but we always do. Perhaps it is better not to question where it comes from and just be glad we find it from somewhere.

T - 7 days.....7 long days....

More of the Same....

2012-01-29T12:07:00.000-04:00

Today was very quiet on the unit. It was strange. The pediatric resident showed up as did the resident from ENT to make sure there were no problems with Ben's new NG tube. The nurse came in from time to time but over all it was rather quiet.

My parents were down for a visit, which broke up the day for me a bit. Believe it or not I also did laundry. There are washers and dryers on the unit, and Ben needed some things doing very badly, so I broke down and did laundry. It was nice to do something normal...even if it was laundry.

I am sure the quiet will be broken tomorrow. The parade of people will continue and there will be confusion around what Ben is having done when, where and by whom.

Fingers crossed there won't be any Monday Madness for us tomorrow.

I'm never sleeping again...

2012-01-28T15:47:00.003-04:00

or at least not until we are home! I really did not like how last night went. Honestly I feel like I have to be awake all the time and "police" what the nurses are doing. This is the first really concerning episode since our admission last week to the PMU unit. The nurse we had was fine she just did what she felt like when she felt like doing it and it really ticked me off....One of these times I will say something to get myself kicked off the unit but Ben cannot speak for himself so I am going to!

First off this nurse was kind enough to offer to do Ben's NG feeds for me...which would have been fine except she mixed up much larger volumes of his food than needed and pumped in what she felt like he should get and not bother with what had been decided with the dietitians and paediatricians. Minor so I just told her "You know what I will just sleep between feeds, it will be fine. I will do it." Well Ben wouldn't settle after she had flushed his NG tube so she "thought" perhaps he felt warm, so maybe he had a fever and she would give Tylenol to settle him.

I made it clear that he was ONLY to get the Tylenol if he had a fever. He did not but she gave it anyway even though I asked her not to. He was not in pain, he had no fever and he settled with in a few seconds of my picking him up. I let it go. Murdering a nurse at 2 am would not have won me many friends.

This morning it was discovered that Ben had dislodged his feeding tube. ENT had to be called and over the course of an hour a room full of doctors and nurses finally got it reinserted.

Unfortunately placement was questioned. The resident wanted to pull the tube out and try again. I wouldn't allow it. Instead we went and had an X-Ray to check the NG tube placement. While exposing him to radiation isn't a good idea either I just couldn't subject him to having one NG pulled out to have it put back in and have an X-Ray after that anyway. The NG is in the right spot so all was okay.

It seems like everyday in here is a test.

Mandibular Distraction Osteogenisis

2012-01-27T11:00:00.003-04:00

I think this video from UCLA explains Ben's upcoming surgery quite well.

**Warning this video does have a couple clips of surgery so some may not want to watch**

Woohoo

2012-01-27T10:21:00.005-04:00

Today is a very special day. Today Ben is FINALLY above his birth weight!!!!!!!!!

Today's weight.....4025g or 4.025Kg!!!

8 pounds 14 ounces.....2 ounces above what he weighed one month and 12 days ago.

Progress....finally progress

Cat in the cockpit

2012-01-27T10:10:00.002-04:00

Given our recent circumstances I needed a smile. My husband told me about this news story the other day and it did the trick.

Glad that wasn't my flight (sounds like something that would happen to me though)

http://ca.news.yahoo.com/cat-cockpit-causes-four-hour-flight-delay-halifax-204523481.html

Enjoy :)

Tired....

2012-01-26T23:22:00.002-04:00

I am in need of some rest. Ben's O2 monitor alarmed off and on most of the night. When it wasn't alarming the kangaroo feeding pump was alarming. I tried very hard to rest but it just wasn't in the cards and got perhaps 2 hours of sleep total, but it was VERY broken sleep.

This morning Ben had his scope in ENT. A small camera was passed into the upper portion of his windpipe and visualized on a small TV screen. Thankfully everything looked normal and structurally we are only dealing with a small jaw and chin.

Ben will be "wait listed" for his bronchoscopy and get that sometime early next week as the OR time allows.

We are one step closer to surgery...it still doesn't seem real.

Long Day

2012-01-25T23:56:00.004-04:00

Today was Ben's CT. It was a very long day, and honestly harder on him than it was on me.

Overnight we delayed all his feeds for 20-30 minutes so that his last feed would be around 6am. We also decided to push all the feeds via the NG tube to allow him to rest in preparation for the long day ahead of him.

At 8 am we were told that we may get to have the CT done early so to start getting Ben ready around 9:30. I dressed him in his Jonny shirt and started the NG pump with clear fluids he was allowed.

10am and nothing...we were still waiting.

11:30 Ashley called to let me know how he and Harrison were doing. I cut the call short since someone was at the door.

The resident for pediatrics was at the door with the nurse whom was less than amused. I couldn't quite grasp why she was here. She explained that (not unlike yesterday) there had been a "misunderstanding" between departments. The person booking the CT was under the impression that Ben would be allowed to be sedated and remain on his front, the radiologist however wanted Ben on his back meaning he would need to be sedated with a breathing tube, Dr. Hong wanted the CT done on his front with no sedation. Since there were not 1, not 2 but 3 different scenarios the resident wasn't sure what the actual plan was going to be. She was going to page Dr. Hong and reassess the situation in 45 minutes to an hour.

I spent the next 78 minutes calling Ashley and generally fuming over the situation. Poor Ben was originally here to gain weight. He had to this point spent over 6 hours with no food and no plan to resume feeds until someone could figure out what the heck was going to happen. Not exactly easy for him to put on weight when he can't take a feed. I mean with an anesthetic clearly he can't eat before hand but I thought all these little details (like IF he was going to be given an anaesthetic or not) should have been worked out in advance of his fast.

At shortly past one Ben's nurse returned to explain we could resume feeds and that the CT people were going to "try" the CT unsedated and with Ben on his front.

After half of a feed, we were called to the CT. Ben was swaddled and placed on his tummy in the CT machine, the little protective blanket wrapped around him so only his little head was visible. Normally parents aren't allowed in but somehow I talked my way in, and was given a very attractive protective apron. I stood on once side of the scanner, his nurse on the other. I wanted to stay close so he would know I was there and didn't leave him.

Ben was a super star. He only moved once during the whole scan and from what the techs said, they were pleased with the images.

Now the waiting game started to find out if Ben was a surgical candidate.

At 1522 Dr. Hong walked in. A small surgical instrument pack in his hand. He told me he reviewed the scan and that there was in fact enough bone mass in Ben's jaw to have the surgery!!! He showed me the device he and Dr. Belozy would be using in Ben's jaw. He also said that tomorrow he would assess Ben's upper airway in the ENT clinic and if that was okay, then the instruments would be ordered and the surgeons would start looking for some OR time over the next two to three weeks. Once a date is booked a multidisciplinary meeting will be held with Ashley and I to discuss the benefits and risks of the surgery in more detail.

This day may have been long, and frustrating, however it ended on the highest of high notes. Ben is a surgical candidate. In a few short weeks he will be able to breathe easily. At the moment it doesn't seem possible...I just hope I'm not dreaming.

Strange Day

2012-01-24T22:59:00.003-04:00

Today was odd. At times things seemed to be happening, yet here we are at the end of the day and nothing.

Ben's procedures were cancelled, apparently schedules couldn't be coordinated. The CT in the OR "should"now take place tomorrow.

Dr. Hong made a 3 minute appearance late afternoon, and really it was useless. The bronchoscopy will be done (and I quote) "whenever".

We have been here for 5 days but it seems like forever. The anxiety waiting for these tests is killing me.

I hope my nerves last through tomorrow.

READ THE SIGN!!!!!!!!!

2012-01-24T09:18:00.004-04:00

It feels like I go over this daily...in fact I am sure I do. Last night we had a sign put up. I have been asked 4 times in 12 hours if he can go on his back. The answer for now is still no.

Yesterday was a strange day. Things seemed to happen quickly, yet at the same time it was like nothing was happening at all. The CT and bronchoscopy are hopefully being done today. Ben took his last feed via his NG tube and the kangaroo pump around 7:30am. He will need to be put under by the anesthetist and have a breathing tube placed.

The tricky part for the staff is that Ben has to be on his tummy and the tests and surgery need to be done on his back. This is why he needs to be put to sleep and have the breathing tube placed. Even the CT will have to be done in the OR. This complicates things further as so many staff need to be present for this to take place. At the moment Radiology, Pediatrics, ENT, Plastics, Respiratory, and anaesthesiology are all trying to coordinate their schedules with an available OR to get the test and procedure done. As of right now we hope he will be going later this afternoon, but we may have to resume the feeds and try for the tests tomorrow.

On a side note Ashley and I started our education/training with Ben's NG tube last evening. We were given a home tube feed package with information and ordering numbers. This morning I, along with his nurse, did a double check for placement. Then hooked up the pump, issued the feed, gave Ben his medications via the NG, flushed the line and taped the tube back so he won't pull it out. I felt very awkward doing it, but considering it was only my first time doing it solo and only the second time total, it didn't go that badly. I am sure by the time of discharge I will be able to do it in my sleep.

Victoria Chilling Out

2012-01-23T21:14:00.000-04:00

I can't believe how grown up she is getting...

Hard to believe she is only 9 looking at this picture!!!

Harrison at Work

2012-01-23T21:00:00.002-04:00

This picture was taken a few weeks ago but I love it!

Harrison is playing with the laptop gran sent him from England for Christmas.

It's hard work being 14 months old!

I hate that beeping machine!!!!!!!!!

2012-01-23T08:34:00.003-04:00

It is impossible to sleep in this place...I am getting so tired.

All night long some thing was going BEEP!

First it was the kangaroo feeding pump.

Then Ben kicked off his SPO2 monitor.

This continued ALL night long!!! One would beep then the other.

All this has done is increase my anxiety levels and prevent me from getting any rest at all. Perhaps if the parade of people isn't too bad I will try and rest once my husband gets back.....

Somehow I wouldn't hold my breath on that one ***SIGH***

Pictures of Ben

2012-01-22T10:37:00.002-04:00

Ben getting some much needed sleep this morning (yes I know he is on his tummy but he has to be to maintain his airway due to the Pierre Robin)

Watching his fishy mobile that the nurse brought him

And again...

Ben and Daddy chilling before anything started when we first arrived here on Friday:

And Again...

I think it is starting to show in the pictures that Ben is gaining some weight...even if we have only been here a few days. Lets hope this continues!

Weight Check

2012-01-22T10:10:00.006-04:00

Last night was a good night for Ben. The pediatrician following us at the IWK, Dr. Szudec, along with the pediatric dietitian have Ben on a high calorie diet. Right now he is on breast milk fortified with a concentrated formula. The proportion has stayed the same as what Dr. Hilliard put us on a few days ago in the valley. 100mL of breast milk and 25mL of formula.

This is just short of 4 ounces. He gets this "4" ounces every 4 hours. They want him to try and take as much from the bottle as possible and just supplement with the NG tube.

To give him a much needed rest, as soon as Ben starts to become sleepy and has no interest in continuing to be awake we don't push him and the rest is delivered via gavage. Overnight they are allowing him to sleep and giving the total feed via the NG tube with the use of a pump.

It seems to be working. For the second day Ben's weight has increased. From what the nurse was saying it was by quite a bit as well. This is a huge relief since he needs to put on weight and continue to gain before his surgery can be done. I wish the nurse had told me what he weighed; she simply told me "It isn't good for you to be fixated on numbers, you will drive yourself crazy." Very nice nurse, very good to Ben and she knows her stuff....still I will go behind her back and ask his nurse tonight what he weighed.

Fingers crossed this continues and Ben's weight at least gets back to his birth weight over the next few days.

NG tube....Number Two....

2012-01-21T14:45:00.006-04:00

Ben decided he no longer wanted nor needed his NG tube. While the nurse was doing his vitals his little hand yanked the NG tube out in one movement.

One nurse (who was covering for our nurse) thought it was okay for me to put another NG tube in....despite not ever being shown how, or the fact he can't tolerate being on his back AND it took a doctor and a nurse to get it in yesterday. Needless to say I told her that until he could be on his back longer than 4 or 5 seconds without his sats dropping I was NOT comfortable doing it and would not do it. I also told her I needed to be shown properly how to measure the tube, place the tube, hold Ben and so on and so forth.

In the end the ENT doctor on call, and Anaesthetist and our normal nurse came. It took all three of them to get the new (longer) NG tube in.

I think the plan is to do total NG feeds until the weight comes up a bit. I am alright with this. He needs his strength and to gain some weight so we can get his airway sorted out.

This can and probably will change again. Only time will tell

A Busy Night

2012-01-21T09:09:00.003-04:00

Last night seemed to continue with the busy and the crazy. Ben's nurse was amazing. His name was Andrew and he honestly couldn't do enough for us. After asking all day for a correct pump kit he found the parts to make one between 3 store rooms. He found me a Medela micro steam bag to sterilize Ben's bottle. Again I had asked all day for one and no one seemed to be able to do it.

He also, like my husband and myself, questioned the reasoning for the NG tube if he wasn't going to be using it. We made our own game plan really. Perhaps that's why we like him. He said to try the feed and because he knew Ben had been through so much, he would check back on him early into the feed and if it didn't work we would gavage the rest. This would give Ben his much needed calories but still allow him to sleep. Andrew was busy ( I don't think the man stopped all night!) so he sent in another nurse to check on us. When he knew Ben was working way to hard for what little bit he got he started the gavage and let Ashley and I finish it.

Once Ben settled...he slept. Andrew made the suggestion that overnight and into the morning we would gavage feed to allow Ben a nice uninterrupted sleep. Ben could rest as long as he liked, conserve calories and still have a full feed. It was, for the first time in days, I felt relaxed. Ben had a full feed. He wasn't over tired...and he was resting and I knew even if I overslept that this nurse would be in to make sure he got his food. I really liked this nurse.

When things didn't go as planned at the 2am feed, Andrew improvised. The gavage wasn't working properly, the NG tube was too short for gravity to do it's thing. Andrew tried an extension and it didn't work so he got a pump. He made what we had work for the time being so that Ben could rest. He even stayed and helped me settle him once the pump feed was started.

The remainder of the night Andrew let me sleep and fed Ben whenever via the NG tube. I got some sleep (not much but WAY more than I have been!) and actually hope to try and wrap my head around what is going to be happening over the next few weeks.

Ben's nurse today is Sara and she seems every bit as motivated as Andrew was to allow Ben to sleep and gavage feed when he doesn't wake on his own in the given 3~4 hour window for feeds.

Lets hope that means today will be a good day.

Hanging by a thread...

2012-01-20T19:46:00.004-04:00

That is seriously how I feel right now....that we are just hanging by a thread.

Perhaps I should start by warning you all that this is LONG. Okay not LONG but insanely LONG. We have been here for 9 hours and holy what a day. You may want to make yourself comfortable, perhaps get some tea because this is one rocky ride.

Lets rewind to yesterday....

We arrived at the shared clinics at the IWK for our follow up with the cleft palate team. This team includes a feeding team (headed by the nurse that I didn't really get on with), a plastic surgeon, an ENT and a pediatrician to name a few.

Things started off alright...mostly measurements and background about how things have been since Ben was discharged. His weight was up by a few grams...nothing enough to be excited about but at least he didn't lose. The nurse was bordering on rude. I tried my best to hold it together but lack of sleep, lack of eating and feeling rather attacked I lost it. I was crying I was so angry. While Dr. Hilliard and every other health care person involved in Ben's care has asked me the same questions this was really the first time I felt I and my parenting was being attacked. It was like she was insinuating that I wasn't feeding him...or feeding him correctly. My husband jumped to my defense but she really wasn't listening to anyone but herself.

As the morning progressed my frustration only increased. The Doctor from plastics came and talked with us from the plastic surgery point of view. Not much had changed really. His main concern was that Ben wasn't putting on weight like he should be. He actually went above and beyond and explained that babies who are born with Pierre Robin often seem to have a set back (like what we are experiencing now) around the 4-6 week mark. We are at that point now so this could be what is contributing to the poor weight gain. He could not however, explain why this is. While this does seem to explain where Ben is now it has some serious implications. Due to the fact Ben isn't putting on weight his overall growth will inevitably slow. This means his jaw will not grow as quickly as it could and will simply prolong the breathing issues. Prolonging the breathing issues will continue to complicate feeding since Ben has to work harder to eat and burns more calories than he gets in many cases. This vicious circle means that his palate surgery won't be able to happen as soon as it could because of poor growth. In other words he was supporting the insertion of an NG tube. While I was frustrated, I know this is the best solution. The pediatrician came in and said her bit but it was basically what the plastics guy had just gone through anyway. The next discussion was around admission and inserting an NG tube. While I wanted to stay and have things start moving right then and there, the pediatric medical unit was full. Arrangements for a direct admission were made for the following day (today) at 10:00am. I should make it known that I explained my rather unique situation, in the hopes that the nurse would have half a heart (and brain!) and help me work something out. My husband is going back to the UK next week, my family goes to Barbados next week. Leaving me with a sick infant and 2 other kids to care for. My concern is not about being home, but what to do should Ben need to be readmitted. The nurse was rude stating my other children could be anywhere around let alone room in. While I didn't expect them to room in with Ben I did think perhaps we could find some solution to what may happen. I should have expected this response when it was like pulling teeth for her to make sure arrangements could be made for Ashley to stay with me. I became quite upset, understandably, wanting to know what I was to do with the other kids should Ben need more care. She told me to stop worrying, to calm down and basically get over it....Can you tell I don't care for this woman!!!!!

The nurse started in again about me "calming down and stop crying" before ushering my husband, Harrison and I out the door to the ENT department. This was actually the most relaxing and overall best part of the whole visit. The ENT guys seem great. They were informative without being pushy or rude. The explanation of why Pierre Robin children get more fluid build up and have more infections was covered as were the overview of tube insertion surgery. No big deal. SOooooooo we head back to the clinic.

After returning the nurse decided to have one more go at me before we left for the day. She wanted to see Ben feed. While the breast milk was heating was when she, in my opinion, crossed a line. She told me in an attempt to save my husband and I money and added financial stress during this time, my husband should return to the UK and stay there for at least 6 months!!! To be honest not much registered after that....I was FURIOUS!!!! I then tried to get her to listen again...it still didn't work. She didn't listen to how Ben was feeding, what medications he was on, what his schedule was like, what his doctors in the valley said or anything really. As my husband pointed out I think she just likes the sound of her own voice. She followed by saying "Ben isn't a sick baby, throw your guilt out the window and be happy he isn't dying...I mean it isn't like he has cancer." and walked out!!!!!!!!!!!!!!!!!!!!! ARGH!!!!!!!! Sooo the opposite of being helpful.

The nurse came back to watch Ben feed and was very snotty and down right rude. "Oh look he does suck on the bottle" "Oh he did take his feed in under 40 minutes" "He seems to be breathing okay." I felt like screaming no Sh*t Sherlock at her but realized that wouldn't get me anywhere.

I was never so glad to leave an appointment in all my life and knowing we were coming back to be admitted made me feel sick!

Fast forward to today...

We are readmitted to the Pediatric medical unit. We arrived at 10am. Once the admitting paperwork was completed we headed up to the 7th floor of the IWK children's site.

Things stared off pretty slowly. The nurse came in, eventually, and did the nursing admission database with me. She took me for a tour of the unit. She did some basic vitals on Ben and left us too it.

A resident pediatric doctor came in and took a complete history. He also did a basic assessment of Ben and left.

The nurse brought a breast pump and my husband hunted down a pump kit for me. I called the pharmacy back home to get the dosage of Ben's medication that I forgot to bring with us and my husband and I had lunch.

Ben feed and slept as usual. Genetics came in to see us and went over the results that came back before Christmas in more depth. After they left my husband and I were wondering what was taking so long for someone to come insert a stupid NG tube!

I eventually flagged down our nurse who informed me they were waiting on the anesthesiologist before putting the tube in. I thought this was strange since the anesthesiologist wasn't present when he had the NG tube put in the NICU.

A social worker came to help us iron out any needs we may have to make our stay more comfortable. Since the nurse from yesterday hadn't found Ashley a cot, I asked if she could get him back in Ronald MacDonald house. She did. She was also able to provide us with some phone card to call home to the kids and our family that is away.

While she was here the consultant from plastics came in. He explained to us that the anesthesiologist felt Ben should be in the OR to have the NG tube placed. He also came to explain that when this is the case that the child is often looking at having mandibular distraction osteogenesis surgery in the near future. From this point on all the conversations became about surgery. Basically the distraction is a surgical procedure to lengthen the jaw and stabilizes the airway. I will explain the procedure in more depth another time. The plastics doctor continued on the he and his associate from ENT Dr Hong would be back to see us.

They came back a little later and went over more specifics regarding the procedure and the benefits of Ben having it done and having it done sooner rather than later. To see if Ben is a surgical candidate we need to have a CT scan done and a 3d mandibular reconstruction done as well as a bronchoscopy. Both will need to be done under sedation, so they will try to be arranged for the same day. That will be happening sometime next week.

Dr Hong came back a bit later with a nurse and put the NG tube in. They decided that having him in the OR was overkill since he tolerated the procedure well while in the NICU. Other than absolutely HATING the thing...Ben is doing well with it.

The next pain in the bum is that the feeding schedule has him doing what he was at home! The dietetics department have him on 3 oz every 3 hours by bottle! He is taking and has been taking that at home. They are only going to top up to 3 oz when he can't meet the 3oz per hour feeding schedule! It seems pointless for him to have that tube!

Right now I am trying to have all the information sink in to make scenes. It isn't really working.

It looks like we will be here a while....It looks like Ben will be having his first surgery soon...and he will be going through loads of tests.

I am not sure my nerves will take much more!

Readmission....

2012-01-19T22:11:00.002-04:00

Yup that's right...Ben is being readmitted. The NG tube is happening and the visit today was a major frustration. On top of all that there were no beds available today so we have to go BACK home and then come BACK tomorrow morning!!

I am too ticked off...frustrated....upset and so on and so forth to update this properly. Tomorrow once we are settled I will update the events of today....

The "Talk"

2012-01-18T21:35:00.000-04:00

So the appointment with Dr. Hilliard wasn't as pleasant as it could have been. She was fantastic. I am not complaining about her or her care in the least. I think she is fantastic.

What I am upset about is the reality of a feeding tube in Ben's future. We had the "Talk" around an NG tube. She just felt it would help him get over the plateau he seems to have some up against and make life a bit more stress free on the other side. I know she is right, yet I still feel guilty and like there is something more I could do.

She is going to fortify his breast milk with a concentrated formula to really up his calories. Hopefully that will help some...he was up a bit from yesterday but not enough to count.

Seriously I am freaking out about tomorrow....The nurse that runs the cleft palate clinic and I really didn't get off on the right foot in the NICU. I really hope that I will have a better experience than I think I will.

Frustration

2012-01-17T14:20:00.003-04:00

Today marks another day of frustration. It was the start of the overwhelming set of appointments we have for Ben this week.

Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.

I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.

Dr. Cogswell seems to agree with his local pediatrician that he is doing well in all other aspects other than the weight gain and perhaps a special prescription for a human milk fortifier may help to increase the calorie content enough for him to thrive and gain the much needed weight. We will be seeing his pediatrician, Dr. Hilliard, tomorrow to discuss this option.

On the plus side Dr.Cogswell felt Ben's airway management was much better and that he was very content and not as distressed as his last visit. His lungs were clear and he was able to have his second RSV injection today (right on schedule!) which was a huge relief.

Thursday we have the outpatient cleft palate team appointments. We will be seeing several doctors, surgeons and specialists along with the feeding team, and finished off with an appointment with the geneticist.

To be honest the whole situation is getting overwhelming and makes me feel more than a bit sick. The situation lends itself to making one feel like a bad parent even though no one has come right out and said that. I know it seems bad now but I can't imagine how bad it would be should he require readmission and an NG tube or worse. I know Ben will be having surgery within this next year or so and I don't know how I will mentally cope with that. I just hope this whole medical situation resolves itself sooner rather than later before Ben is old enough to remember any of it.

He is a VERY strong little boy....I honestly wish I was as strong.

Haberman Feeder

2012-01-15T19:04:00.000-04:00

First off this bottle is a miracle for us! Ben feeds so well with it. Most people have never heard of a Haberman Feeder...I know up until I had Ben I hadn't, or if I did I don't remember it.

I love the fact that the bottle creates the suction for him (where he can't because of the cleft palate) and that he is in control of how much he gets. I also love the fact that if he is being "lazy" you can still squeeze the tip (like the squeeze feeders) so that he still gets his food (and calories!!)

Honestly I think this picture explains how it works better than I could!

And a bigger picture of the bottle/feeder:

What I DO NOT Like....THE PRICE!!!!

Last week I ordered one in from a local retailer in Halifax. After taxes one bottle cost us $42.98!!!!!!! ONE FLIPPING BOTTLE!!! ARGH!!!

On the plus side they are A LOT cheaper in the UK!!! Even with the stupid exchange rate.

Okay...I'm here...Where the heck are you?

2012-01-11T16:54:00.000-04:00

So....after waiting over 8 months to see an opthamologist whom specializes in corneal disorders...NO ONE WAS AT THE OFFICE!!!!

Ashley and I arrived at the Coburg medical professional centre and went to suite 401 as instructed in my appointment letter. When I pushed the door open in was an empty suite with exposed wires and a pile of post on the floor! I was not impressed...and I really don't thing there are words to describe my husbands disbelief!

Anyway it turns out the office moved up the road to the Spring Garden Road Medical Centre.

I did make it to my appointment and had a less than fun procedure done...which I get to have done again in 10 weeks time.

*sigh*

I am starting to think we are being tested!!!

Oh and HAPPY BIRTHDAY LAUREN (in case I don't get to facebook or message you!)

10 is the best number!!!!!!

2012-01-10T15:06:00.001-04:00

Ben had his follow up appointment for his weight gain today. He is up 10 grams!!!
Okay, I know that is pretty much nothing BUT it wasn't a loss!!!!

Yeah for small victories!!!!

Pierre Robin Sequence

2012-01-09T16:38:00.001-04:00

I realize that in the past few weeks I have mentioned numerous times that Ben has Pierre Robin (pronounced “Roban”) Sequence but I have never actually explained what it is and exactly what we are dealing with.

Simply put Pierre Robin is not a syndrome or a disease. However that is were it stops being simple as it can be part of another disease or syndrome.

It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis."

It is a birth condition that involves the lower jaw being either small in size (micrognathia) or set back from the upper jaw (retrognathia). As a result, the tongue tends to be displaced back towards the throat, where it can fall back and obstruct the airway (glossoptosis). Most infants, but not all, will also have a cleft palate. Ben does indeed have the cleft palate.

The basic cause appears to be the failure of the lower jaw to develop normally before birth. During the early weeks in pregnancy, the lower jaw grows rapidly, allowing the tongue to descend from between the two halves of the palate. If, for some reason, the lower jaw does not grow properly, the tongue can prevent the palate from closing, resulting in a cleft palate. The small or displaced lower jaw also causes the tongue to be positioned at the back of the mouth, possibly causing breathing difficulty at birth. This “sequencing” of events is the reason why the condition has been classified as a deformation sequence. For some, these physical characteristics may result from another syndrome or chromosomal condition. Luckily it looks like Ben's case is isolated.

Robin Sequence/Complex is rather uncommon. Frequency estimates range from 1 in 20,000 to 50,000 births, based on how strictly the condition is defined.

It is important to understand that Robin Sequence/Complex can occur by itself (described as “isolated”) or as a feature of another syndrome. Parents who have had one child with isolated Robin Sequence probably have between a 1 and 5% chance of having another child with this condition.

When Robin Sequence/Complex is observed in patients with Stickler Syndrome, Velocardiofacial Syndrome, or Treacher Collins Syndrome, genetic/chromosomal factors will influence whether more affected children will be born. Robin Sequence/Complex also occurs in children with environmentally-induced (“teratogenic”) syndromes such as Fetal Alcohol Syndrome and Fetal Hydantoin Syndrome.This is why we had to have genetic testing done at the IWK, although at the moment it doesn't seem likely that there is even a possibility of an associated syndrome.

Robin Sequence/Complex, like most birth defects, varies in severity from child to child. Some children may have more problems than others. Problems in breathing and feeding in early infancy are the most common. Parents need to know how to position the infant in order to minimize problems (i.e., not placing the infant on his or her back). For severely affected children, positioning alone may not be sufficient, and the pediatrician may recommend specially-designed devices to protect the airway and facilitate feeding. Some children who have severe breathing problems may require a surgical procedure to make satisfactory breathing possible.
The pediatrician or ear, nose, and throat specialist will also carefully monitor the baby for ear disease. Virtually all children with cleft palate are prone to build-up of fluid behind the eardrum. The placement of ventilation tubes in the eardrums may be recommended to reduce fluid build-up. Since ear infections can cause temporary hearing loss that can affect speech and language development, the infant’s hearing should also be monitored from early infancy by an audiologist.

In many patients, the lower jaw (mandible) grows rapidly during the first years of life. In some children, the jaw may grow so quickly that by the time the child is approximately four to six years of age, the profile looks normal. Children who do not experience this “catch-up” growth may require surgery on their jaws.

The cleft palate, needs to be surgically closed. The timing of the surgery depends on the child’s individual growth and development, but it is generally done at 1 to 2 years of age. Because children with cleft palate are at higher risk for delayed or defective speech development, they should be monitored by a speech pathologist throughout early childhood.

I obviously haven't gone into any great depth, especially with some of the syndromes that can be seen with PRS. Ben has been tested and will continued to be followed to make sure that this is in fact isolated PRS.

No wonder I am a nervous wreck!

Victoria and Ben

2012-01-08T21:00:00.001-04:00

Harrison Has A Bath...

2012-01-07T18:48:00.003-04:00

and falls asleep!! Too Cute!!

Somedays I feel like giving up!!!

2012-01-06T18:29:00.001-04:00

Today Ben went for a follow up appointment with Dr.Cogswell. Ben has been doing well (in my opinion). He is eating and sleeping well. We haven`t had any problems managing his airway or caring for him. We have all kinds of appointments set up for him and I thought things were going well.

When Ben was weighed...his weight is down...again. I don`t know what else to do! I am already staying awake most nights so I can wake and feed him. I may order a scale to have at the house so I can monitor his weight a bit better. Obviously I am not doing so well at it at the moment. The doctor mentioned supplementing the pumped breast milk with formula.

While we will supplement his feeds, I honestly just want to cry. It is bad enough I can`t breastfeed ( in the true sense of the term breastfeeding anyway) but now to know the milk he is getting from me isn`t good enough just adds insult to injury.

I have nothing against formula and formula feeding. It just isn`t for me. Breastfeeding isn`t for everyone and that`s fine. I think it should be a choice made that is right for parent(s) and baby. I, however, did not get a choice this time and I am having a hard time getting past it.

Ben will be seen again on Tuesday for a weight check. Hopefully his weight will be up a bit. Today has been a bad day....I am trying to keep optimistic but I think my optimistic meter is broken. All I see is this ending in poor Ben having the NG tube again and even worse ending up back in hospital.

*SIGH* Here is to tomorrow being a better day!

Happy New Year!!!!

2012-01-01T18:21:00.000-04:00

Spider Baby!

2011-12-27T18:16:00.000-04:00

Even Spider Baby needs a nap!

We're HOME!!!!!!!!

2011-12-25T18:11:00.000-04:00

When we left the IWK yesterday we were told to call and check in before we headed back, just to let them know how things were going and how our night home went.

Unbelievably we were told we could stay home and that Ben would be officially discharged at the end of our 30 hour pass!

It hasn't really sunk in yet but we are home!!!! This has been a very long 10 days!

Merry Christmas from the Floyd's!!

2011-12-25T17:38:00.000-04:00

MERRY CHRISTMAS!!!!!!!!

Day Dream?

2011-12-24T16:53:00.001-04:00

I think I must be dreaming....we are getting a 30 hour pass to go home for Christmas!!!

Ashley packed...I got myself and Ben ready...we went to the NICU and had the nurse check Ben and the straps in his car bed.

Ashley took a load of things to the van...and then we left. I kept thinking someone was going to stop us. We went through both set of NICU locked doors and no one did. We made it to the elevator, then the lobby. We handed in the registration of live birth form and got in the van.

While we were driving away, I watched the hospital fade from view. No one stopped us. We were really going home...even if only for 30 hours. We were going to have Ben, Harrison and Victoria all in one place for the first time. No doctors, no nurses, no alarms, no monitors...I get to sleep in my own bed tonight and have a shower in my own bathroom with a towel that smells like fabric softener not "hospital". Suddenly the fact I didn't get all the shopping done I had wanted to didn't matter, the fact nothing is wrapped and under the tree doesn't matter, nor does it matter the BIG family dinner at my place isn't going to happen tonight. All that matters is we are all going to be home.

I keep expecting this to be a dream and wake up in the room that is always dark no matter what time of day. If this isn't a dream I am going to get what I really wanted for Christmas, my husband, my kids and myself all at HOME for Christmas.

Christmas Eve NICU Shoutout

2011-12-24T08:47:00.000-04:00

This morning Ben was taken down to the NICU for his morning checks. I left him there for a little bit so Ashley and I could sort some things out. When I came back Ben's nurse, Shyla, had written on Ben's shoutout board that was above his cot/bill bed.

This was so cute and made me smile...especially the fact his weight was up 20g!!

Glow Bug

2011-12-23T23:36:00.000-04:00

My little glow bug is sleeping....my husband is sleeping and I am tired....

I'm tired of a room with no windows...

I'm tired of sheets and towels that smell like a hospital and not home...

I'm tired of everyone treating us like patients and not people...

I'm tired of being tired...

Ben and Daddy

2011-12-23T20:44:00.000-04:00

Presents

2011-12-23T20:06:00.003-04:00

Today was the day of the present.

First the lovely social worker that has been helping to organise accommodation for us and putting us in touch with resources to help us cope came to see us. She took Ashley and I to a Christmas tree that had loads of toys underneath. We were able to pick something for Harrison and Victoria to give them for Christmas from the NICU staff. We were in shock. These people go above and beyond to help restore some normal to the lives of the people that come and go through the NICU doors. I can't say enough good about them.

Afterwards Ashley and I were paid a visit by the genetic counselor. I was a bit worried. The results weren't expected in that quickly and being really the last day of work before the Christmas holiday my mind went to a pretty dark place. However I was pleasantly surprised when she told us that Ben's results were essentially normal. One portion of the test won't be back for a few months but there is no reason to believe it would be abnormal at all. It truly looks like Ben's Pierre Robin Sequence is an isolated event. This truly was the best Christmas gift we could get!!!

We decided that we really needed to finish off the shopping for the other kids for Christmas and we left Ben for a very short time in the NICU nursery so we could get the rest of the presents. It truly is starting to feel a little bit like Christmas.

Every Village Has An Idiot!!!!

2011-12-23T10:44:00.000-04:00

Last night we had a set back. Nothing major...HOWEVER...a certain nurse best steer clear tonight or my husband will be even less kind to her than I was.

Ashley and I have now been moved to a parent room inside the NICU and Ben is allowed to room in with us most of the time. Last evening we left Ben for a few hours to go get some food and clear our heads a bit. Once we returned I left Ben down there for a bit, visited with some family that had come to see us and got things ready for his next feed. When I returned to collect Ben I was informed he had a "chocking" episode and that he was very filled up and working very hard. Apparently things were bad enough that Ben's nurse put him back on the monitors. Since things looked fine I was allowed to take him back to our room. He sounded very nasal and just nor himself. I just watched for a few hours and there was no change. I tried to wake and feed him but he screamed every time I tried to give him a bottle. I was very concerned something was up and boy was there ever something else up.

Apparently Ben's nurse had gone to break and another nurse was "covering" and ended up attempting to feed him. Well this woman is clearly a runaway idiot from a near by village. She did not read the notes in the chart or if she did she certainly didn't understand them, she didn't ask questions nor did she contact me. She tried to cover her tracks by saying she called our room to discuss Ben with me but I pointed out that our cell number was on the front of the chart and that should have been called. This IDIOT decided to try and feed him in a completely wrong position AND was SQUEEZING his bottle when she doesn't need to!!! The combination resulted in poor little Ben being overwhelmed with milk and chocking to the point he vomited. Due to his cleft this was a very traumatic event and no doubt caused him considerable pain not to mention how hare he was having to work afterwords to breathe! I was livid when I found out. She was nasty when I suggested that perhaps she did not use the bottle correctly and/or position Ben correctly. She assured me that her "36 years in the NICU" made her far more knowledgeable about how to care for a Pierre Robin baby. She also said there was no way he could be feeding as well as I was recording for the chart and was only doing so to go home faster!!!! I wasn't very nice to her from that point on!!

For the rest of the night I left Ben in the NICU but made sure they called for every feed and diaper change. I wasn't letting anyone near him without being there myself to make sure things went well. Poor little guy was scared to take the next few feeds but by 7 this morning he started taking his bottle again. Due to all this he lost some weight which will no doubt delay getting a date for discharge.

This morning at rounds our doctor wasn't impressed by the actions and basically made it known that "mom knows best" that I had no problems feeding him and that he was better off rooming in than in the nursery. So Ben is here with us and happy....well as happy as one cane be in a NICU.

My husband wants me to show him which nurse caused this issue. I have no problem with him dealing with her. For her sake she better hope she isn't on again until after we go home because given what happened...it won't be pretty.

Normal??--An Update

2011-12-22T12:20:00.003-04:00

It has been a busy week to say the least!!! With everything that is going on in the search for answers in regards to Ben's Pierre Robin, we are also trying to make things "normal" at home...especially where we are coming up to Christmas.

First off Ben has been doing well with his feeds, the NG tube was discontinued....restarted and now discontinued again. His weight is fluctuating but he isn't gaining or losing allot. The doctors hope over the next few days as the photo therapy helps with the jaundice that he will become less sleepy and be more interested in feeds. He is a Floyd boy so I am pretty sure he will sleep like his no matter what! I called mom and Harrison is asleep and as I am typing this both Ben and Daddy are enjoying a nice nap, I think that sleep is just what all my boys do and they do it well! Ben continues to do well with his special bottle and the OT woman is a dream! She arrived this morning with a second bottle for Ben so we have a spare to go home with (when ever that may be).

Consults had been arranged for this week and poor little Ben has gone through more tests than you could shake a stick at. This morning Ashley and I had a family meeting with the multidisciplinary team and started getting some answers. We were also able to ask some questions.

Ben has had a consult with Dr. Wilson from plastics. Dr. Wilson was at the meeting and explained that he will be following Ben in terms of the growth of his mandible and also be doing his cleft palate surgery by ( hopefully) late 2012. At the present time Ben is doing remarkably well at managing his airway on his own. He feels that Ben will be able to manage until his jaw grows and he develops the strength to manage his airway in a more normal fashion.

OT and the lactation consultant along with our paediatric specialist went over Ben's high nutritional needs and discussed how he is feeding and how he hopes that will continue to go well.

Cardiology was consulted and Ben had an echo of his heart this week. It was an essentially normal exam!! The gross anatomy looked good and even the more in depth stuff was fine. He will be seen in follow up, although I am not sure when, to make sure things continue on a normal path.

Opthalmology was consulted and saw Ben yesterday. This was by far the hardest thing for me to deal with. Since I have so many issues with my eyes and major eye problems run in my family I have been a nervous wreck waiting on this consult. I know what I have had to go through with my eye and my mom has had many issues/surgeries as well. I know my eye specialist is looking into autoimmune things that may be behind the issues. One of the common syndromes that can be linked to Pierre Robin is Sticklers Syndrome. Sticklers is an autoimmune problem. Anyway the paediatric opthalmolgy team arrived yesterday morning and dilated little Ben's eyes and then did their thing. It was so hard as a mother to stand there and watch them pull and poke and prod at his little eye. Lucky everything looks normal!! None of the red flags for Sticklers are present at this stage. This doesn't mean that signs or symptoms couldn't arise later on but for now things look very good!

Ben had his normal newborn hearing test. He passed with flying colours! Another good outcome.

Ben had an abdominal ultrasound yesterday but the results are not yet back.

Respiratory was also contacted since Ben's airway is so unstable. The main reason for this consult was to see if he would qualify to be immunized against RSV. Due to Ashley, Victoria and I all having asthma and poor little Harrison showing signs of asthma the respiratory consultant was able to wright a letter to authorize the free immunization. He received his first does yesterday afternoon and will receive another on January 15th.

Ashley and I were both asked if we had CPR...which obviously we have. We did need to do a "refresher" this morning with another occupational therapist and RT. This was to ensure with the discharge planner that we as Ben's parents are able to handle whatever happens.

Overall things are going well and Ben is stable enough to go to NICU 2, which is more of a step down unit. Ashley and I have managed to move to a parent room right in the NICU to be with Ben all the time. Even though his bilirubin is still up he is able to room in with us some in a special photo therapy bili bed. All this is to give us more of a sense of normal life....but honestly it has me questioning what NORMAL really is.

Everything I have known about looking after a little one is thrown out the window. Yes Ben is a normal little boy and needs all the same thing any other little boy or girl would need. However the way in which these things are accomplished are vastly different.

Feeding--Ben can't breastfeed in the normal sense of the word. He is able to latch and suck a bit but due to the palate issues I either have to express milk into his mouth or use a special external feeder to help him. Most times it is more about the skin to skin contact than true "feeding". However depending on when his surgery is and how long it takes to heal there is a hope he will get some true feeding in down the road. For now he is getting pumped milk in the special bottle. The fantastic thing about the Haberman feeder is that it is the same motion as breast feeding but instead of Ben creating the suction the bottle does it for him. Both Ashley and I are becoming more familiar with it and it feels more normal.

Sleeping--For years we have been told to put our babies BACK to bed. Ben has to be in the prone position to maintain his airway so he has to sleep that way as well. This means tummy sleeping. Trust me he can sleep with the best of them!!! This is normal for him...but not what most would consider normal I guess?

This brings us to the next issue. The drive home. Due to the fact that Ben has to be kept tummy down or on his side a regular car seat isn't going to work for him. We have been lucky enough that the NICU has a car seat educator who worked with Occupational therapy to get us a car bed. Yup that's right a car BED, and yes it looks like the things our parents had for us and brought us home in during the 60s and 70s!!! In fact I am sure the one sitting in my parents basement looks EXACTLY like the one that was given to us to use for Ben! So he can go in the car but it has to be done differently and I think most would agree not in a normal way at all.

Even diaper changes and baths have to be done slightly modified. A swaddled and side laying for a bath. As for a diaper change very brief periods on his back and frequently being moved to his side to minimize his struggle to breath.

Life isn't normal like it was before but it is becoming a new kind of normal. While the medical stuff is still scary and overwhelming, being his parents and looking after him in this modified way has become normal. I am no longer terrified to pick him up or feed him. I feel just as comfortable with him as I do with the other two....we just have a different sense of normal with him. Ben can do ANYTHING...it just might not be the way you think of it as being normal.

The hospital LIVES!!

2011-12-19T22:18:00.000-04:00

It's Monday and the parade of people has once again resumed. Occupational Therapy had given me a special needs feeder or Haberman feeder to try and I LOVE it for Ben. He can control the milk flow himself and not choke or get milk coming through his cleft palate. The bottles are expensive (38ish dollars EACH +tax) but so worth it. The OT lady gave us one and it is a must we get more before going home.

The lactation consultant was here to help me develop a plan for pumping and storing milk as well as trialing skin to skin and latching prior to Ben's feeds and pumping.

Consults have been arranged for several departments this week so hopefully we will start getting some answers.

Ben did so well feeding we are looking at loosing the NG tube!!! Such good news! His IV was discontinued last night as well!!

Victoria and Harrison were down today as well and it was nice to have some normal family time. I miss them and can't wait until we can all be home!

Sunglasses

2011-12-18T21:43:00.000-04:00

We are still in the NICU and on top of everything else today Ben's bilirubin was elevated so the doctors started photo therapy. Hence the very stylish eye wear!!

Until now I never really noticed exactly how much a hospital slows down over the weekend. Time seems to have all but stopped. I just want to start getting some answers!

Lets hope Monday brings great things.

NG Tube

2011-12-16T21:39:00.002-04:00

One of the major issues Ben is facing is with feeding. Due to his airway and cleft palate it is hard for him to feed. We tried a special squeeze feeder but he wasn't that interested. To make sure he is getting what he needs he has been given an NG to to supplement his feeds.

Ronald MacDonald

2011-12-16T18:56:00.000-04:00

Today I have been discharged. Benjamin is still in the NICU. Thankfully Ronald MacDonald house have rooms outside the NICU and we were lucky enough to get one. Being able to stay so close to him is an absolute sanity saver!

As I am sure anyone who has had an experience with Ronald MacDonald house or Ronald MacDonald Family Rooms will tell you it brings a little bit of normal back to a very abnormal situation.

Please buy a happy meal and/or make a donation to Ronald MacDonald children's charity. Honestly we are very thankful as it is allowing us to stay close to Ben when he needs us and gives Victoria and Harrison a place they can be with us and have it feel somewhat normal.

Benjamin Alvin Floyd~ Our Pierre Robin Sequence Story

2011-12-16T13:09:00.002-04:00

Benjamin Alvin Floyd arrived at 0037 Thursday December 15 2011. He was perfect, 8 pounds 12 ounces, term and a head of hair to die for! But something wasn't quite right. You could tell within a few minutes he was struggling to breathe. He was turning blue and looked so small. That's when everything changed.

Ben was taken to the warmer and the nurses and Ashley started trying to help him however they could. Paediatrics, and Respiratory came in. They managed to get his airway opened and whisked him to the nursery to be looked after. All I could do was watch. It was the worst feeling. Xray saw him too and then Ben was airlifted to the IWK hospital for sick children in Halifax and Ashley and I were transferred by ground.

The next 24 hours were almost incomprehensible. We were able to see Ben for a few minutes in the NICU once the nurses and doctors had him settled. We were told to get some rest but that seemed impossible. We met with doctors from what seemed liked everywhere. Plastics, Genetics, Pediatrics and ENTs. We were told that Ben had some thing called Pierre Robin Sequence and that the prognosis was dependent on if it was an isolated event or part of a bigger problem or syndrome.

For the moment we are in NICU 1 which is a pretty overwhelming place. We are trying to take things one day at a time but knowing that some of the testing will take weeks or months to come back seems unreal.

I will try to update as best I can but life in the NICU is overwhelming...I am posting some pictures of Ben and I in the NICU a few hours after we arrived.

Nutcracker 2011 Cadance Mother Ginger

2011-12-07T15:10:00.001-04:00

Happy Halloween!

2011-10-31T18:35:00.006-03:00

Ready For the Canadian Autumn

2011-10-19T12:12:00.002-03:00

Harry all ready to go out for his morning walk with Mommy!

Sleeping Beauty

2011-10-19T09:07:00.000-03:00

When Victoria was sick back in May, Ash went to Walmart and bought her a sleep mask to help with her headache. Last night I heard her digging around in the freezer and when I went in to check on her this is what I found! What a little Diva!!

Harrison looking out the Window

2011-10-14T18:03:00.000-03:00

I think he is screaming at the bird that landed on Nanny's deck but I am not sure!

Harrison and the pink balloon

2011-10-05T15:26:00.000-03:00

Pictures from the Ex

2011-10-02T17:16:00.000-03:00

Dear Bad Driver,

2011-10-01T15:03:00.000-03:00

Dear Blind old man,
If I ever catch you stopping in the middle of the roundabout again to let someone in I will get out of my vehicle and beat you senseless.
Perhaps you should display the following to allow the rest of us the opportunity to get out of your way!

Thank you

It's Pumpkin time again....

2011-09-30T10:22:00.001-03:00

Well it's fall again and for our family that means pumpkins! Here is a picture of Victoria and Harrison with some of their grand-dads small ones!!

Harrison and the Cake

2011-08-14T14:44:00.000-03:00

Harrison plays the keyboard

2011-08-11T21:38:00.000-03:00

The World According to Harry - Part 2

2011-07-26T15:16:00.001-03:00

The World According to Harry - Part 1

2011-07-26T15:04:00.001-03:00

Harry and his Elmo Easter Basket

2011-04-24T20:14:00.000-03:00

Happy Easter

2011-04-24T19:55:00.002-03:00

Harry and Daddy

2011-04-23T20:05:00.000-03:00

Yummy!!!

2011-04-22T20:10:00.000-03:00

Yum!!! I love cereal!!!

Vote for Harrison!!!

2011-02-20T11:30:00.002-04:00

Harrison is in the Johnson Baby Canada photo contest!!! :)

http://apps.facebook.com/johnsonsbabycanada/entry/123408

Check it out and vote for some cute babies (and Harrison too)

Project Popcorn!!

2011-02-18T10:00:00.003-04:00

Victoria did a science project for the school science fair on popcorn. She did such a great job!!!

Harrison after his bath

2011-02-15T20:11:00.001-04:00

Happy Valentines Day

2011-02-14T08:59:00.000-04:00

Nap Time

2011-02-12T23:37:00.000-04:00

Harrison Relaxing On The Sofa

2011-02-12T15:52:00.001-04:00

Doesn't he look handsome in his new outfit?

Harrison reads a book

2011-02-11T19:37:00.001-04:00

Montreal Canadiens VS Boston Bruins Brawl #3 2-9-11

2011-02-10T19:16:00.000-04:00

Benoit Pouliot VS David Krejci- Brawl #2---2-3-11

2011-02-10T19:11:00.000-04:00

Carey Price VS Tim Thomas-Brawl #1-2-9-11

2011-02-10T19:10:00.000-04:00

Clearly....

2011-02-07T14:04:00.001-04:00

I am not meant to vacuum. WHY??? Well the answer is simple...I managed to catch the damn thing on fire!!!

Not as impressive as when I caught the washing machine on fire I know but hey it's close.

While I LOVE shopping...this was NOT what I had in mind.

I HATE MONDAY!!!

Yummy!!!

2011-02-07T11:15:00.000-04:00

Why???

2011-02-06T14:49:00.001-04:00

Why does everything you put me in have ears????

Snow Day!!

2011-02-03T15:15:00.002-04:00

Well both snowstorms are over. School (and pretty much everything else) was cancelled again today. At the peak of the storm the snow was falling between 4-5cm an hour!!! As you can see by the snow on my deck we got A LOT!!!!

This is what Victoria did with her day off!

Now to dig out....*sigh**

Too Cute!

2011-02-02T22:09:00.001-04:00

Sesame Street - Dance Myself To Sleep

2011-02-02T13:28:00.001-04:00

Victoria found a CD a couple weeks ago of silly songs with Bert and Ernie. This song is on there...Harrison has decided that this is his new favourite "sleepy time song". He has other favourites...just not to sleep to. So I have walked (and danced) many millions of miles with him to this song over and over and over. Now that he is asleep it is still going over and over and over in my head!!

Is it sad I remember this from when I was a kid??

Literacy Day Photos

2011-01-31T12:53:00.000-04:00

Victoria sitting with her friend Ryan at the assembly

Floyd style science!

2011-01-30T12:55:00.006-04:00

Alternate title: How to scare the Sh*t out of your wife OR How to give mommy a heart attack!

So my husband decided to (accidentally) preform a little science experiment. This is how it went...

The Great Can Explosion!

Purpose: To scare the wife/mommy. More scientifically to show that liquids really do expand when frozen. ( You can see where this is going can't you???)

Materials: 1 can of pop (any kind will do...Sprite Zero in this case)
Cold weather (preferably with snow to camouflage the can)
1 unsuspecting wife
1 sleeping 8 year old
1 sleeping infant
Excellent timing
A job that makes you work a way (you will see why this is important later on)

Method: Place can on doorstep. Make sure it is during a cold snap where the temperature will stay -10*C or colder. Leave for work without telling the unsuspecting wife and 8 year old. Working away helps. Wait.

Pictures:

Results: After about 26 hours in -10*C temperatures or greater the can will explode causing a gun shot like sound. In other words the can explodes and hits the house. The 8 year old will wake up and scream. The infant will sleep right through. The wife will go from scared to ready to kill you in 3 seconds flat!

Conclusions: A can of pop left, outside in the cold, on the door step will explode (from the resulting expanding contents) causing your wife to try and kill you. Working away will save your life and keep you from having to clean the mess up.

Story Time With Harrison

2011-01-29T15:30:00.002-04:00

Mommy's Goofball

2011-01-29T14:25:00.004-04:00

I am so tired of SNOW!!!!

2011-01-29T13:14:00.004-04:00

At the moment I HATE SNOW! Why?? Consider the following:

Yesterday the car got stuck on a ridge of snow and I had to shovel it out.
I had to wade in snow up to my arse to get to the composter.
I slipped and fell on the ice...twice
The car ALWAYS has to be cleaned off.
I hate considering -1*C warm...it isn't and never will be
I hate watching my entire family, most of my friends and some of my in laws pack up to head to the warm sunny south while I am going to be stuck here in this miserable crap ALL winter ARGH!!!!!
A windchill of -30*C should be outlawed...but yet has happened twice in the last week.
I am sick of weather warnings, cancellations and power outages.
I no longer see the joy of going anywhere since I have to bundle up with only my eyes visible.

I know there is more but I will stop there. Bottom line I HATE SNOW!!!! Oh and the cold too!!!

Harrison wears a hat...

2011-01-28T16:20:00.005-04:00

What can I say...we live in Canada and it's COLD Lol...

If I didn't know better I'd say he was frowning at me in his sleep....

No School Today!!!

2011-01-27T07:45:00.002-04:00

That's right it's a snow day!!! Looking out the window it is pretty easy to see why...snow and lots of wind so the drifting and visibility is pretty bad.
Did I mention it's still somewhat cold? The weather and radio says it is only -5*C but it feels a lot colder than that!!! I know it isn't the -30*C we had here the other day with the windchill but still it is cold. I miss the warm.

The literacy day stuff at Victoria's school is postponed until tomorrow. I am going to go turn the heat up and pretend I am somewhere warm and sunny.

Daddy and his boy

2011-01-20T14:43:00.001-04:00

Today's RAS award goes to.....

2011-01-20T14:41:00.002-04:00

The RAS (random act of stupidity) award goes to this woman...for texting while walking and well...you'll see!

I can't believe...

2011-01-20T14:26:00.003-04:00

Victoria looks so grown up!!!

Be Careful what you wish for...

2011-01-10T12:18:00.003-04:00

After this last snow fall I prayed for the snow fairy to come and shovel my walkway off so neither my husband nor myself would have to. After seeing this picture I've changed my mind.

Dear readers beware...be careful what you wish for...sometimes you get what you wish for and it isn't at all what you expected it to be!

Random Cuteness

2011-01-08T09:19:00.002-04:00

My little monkey!

Two and a half month stats.

2011-01-07T16:36:00.003-04:00

Harrison had to go to the doctor today to get his immunizations. He was sick at his 2 month appointment and couldn't get them.

He HATED them. Poor little boy. He is so cuddly and just wants to sleep. I must confess, my house is a mess...supper isn't made AND my laundry will soon need it's own post code but I am sitting here cuddling my poor sickly boy.

Anyway his new stats are

Weight: 14 pounds 10 ounces or 6.5 kilos (86 percentile)

Head circumference: 41cm or 16 inches (59 percentile)

Length: 61 cm or 24 inches (71 percentile)

He is in the 76 percentile for weight for length

Dear Daddy,

2011-01-06T19:06:00.003-04:00

Dear Daddy,

While I understand you have to go away for work, would you PLEASE come home soon.

This is the kind of crap mom does to me when you are gone.

Thank you!!!

Love your son

~Harrison

Wearing Red for Baby Scarlett

2011-01-05T22:48:00.002-04:00

Harrison and his big sister wore red today, for baby Scarlett. We are keeping her and her family in our thoughts and prayers.

Scarlett's journey can be found here: http://brandiandchris.blogspot.com/

I couldn't have said it better myself...

2011-01-04T22:53:00.003-04:00

Smile!

2010-12-31T20:50:00.004-04:00

Harrison

2010-12-31T19:01:00.002-04:00

Harrison is such a happy boy, even if his nose is all stuffy.

How NOT To Rob A Drive-Thru

2010-12-29T10:45:00.003-04:00

Clearly this guy needed a back up plan:

http://www.msnbc.msn.com/id/40831921/ns/local_news-orange_county_ca/

Harrison loves his new seat!

2010-12-28T16:05:00.000-04:00

Harrison looking quite proud to be sitting up on his own.

It's Like A Car Wash For Your Feet!

2010-12-28T14:53:00.002-04:00

Seriously????

Snow...

2010-12-27T13:42:00.004-04:00

At least we didn't get very much snow...