New Years Eve Nap

I still never get tired of seeing him sleep on his back!

Tired

I am just tired. Benjamin continues to cough and wheeze. His ears are once again bothering him. One is even leaking and draining a bit. The only thing that seems to make him happy is to be held and walked. I am terrified this will not clear in time for his surgeries.

The pile of things to be done going into the surgeries is mounting too. There are no less than half a dozen appointments. The Christmas stuff needs to be packed and put away. Arrangements for the other kiddos need to be made. The other kids need to be packed up. The house needs to be cleaned up and of course I have to get Benny Bean and I ready to go. I have to call and finalize the preadmission clinics and confirm our room at Ronald MacDonald house.

22 days...I cannot believe that is all we have left until surgery. Come on little dude shake this dang cold!

Cough

Remember how I said Ben has been battling something since November? Well now his cough is getting worse again.

He is miserable, and very tired. I hope it doesn't affect his breathing as it usually does.

I am not going to take any chances and if it is no better in a day or so back to the IWK we go.

We need this under control ASAP so it doesn't delay his surgeries.

Where do I start?

We have so much going on in the upcoming weeks I am not sure where to start really.  We are getting ready for Ben's next group of surgeries, and there is so much to do and so many appointments. Here is a quick recap of the last year:

• Ben born December 15, 2011 with Pierre Robin Sequence.
• Discharged from the NICU December 25, 2011
• Seen in the craniofacial clinic January 19, 2012. Diagnosis of failure to thrive and a severely compromised airway. Plan to readmit January 20, 2012 for NG tube and teaching.
• Readmitted January 20,2012 to PMU at the IWK. The severity of Ben's airway was really seen. The new plan was for a jaw distraction surgery once he had gained enough weight. We stayed on PMU for weeks and Ben had loads of tests prior to his surgery.
• Ben had his Bilateral mandibular osteogenisis surgery February 6 2012
• Ben was admitted to the PICU for 6 days after surgery until his swelling came down, he could be taken off the ventilator and his medications were in check.
• Ben was transferred to MSNU on February 11 2012.
• Ben developed a nasty post op infection that delayed discharge.
• We were finally discharged home February 21 2012.
• Ben battled the post op infection until the removal of the device April 11 2012. Still evidence of infection and placed on strong antibiotics.
• May 3 2012 Ben was readmitted to MSNU for investigation of the ongoing infection. Bone scan showed osteomyelitis. Scalp PICC line inserted. Home care and private nursing to assist me at home.
• Ping ponged back and forth from the IWK as Home care, private nurse and local hospital could not get blood return from the PICC line. Finally readmitted and stayed until antibiotics finished on June 9 2012.
• September follow up with ID seemed suggestive of the infection being cleared.
• Craniofacial clinic in July showed enough weight gain to consider palate repair. Follow up arranged for  October.
• August Ben's weight started to drop again. Took several weeks of playing with his reflux meds and fortified feeds to see any change.
• November visit to craniofacial and cleft palate clinic it was decided to book Ben for his palate surgery. 
• November 11 through to now Ben has been battling nasty fluid build up behind his eardrums. This has caused several infections. The left eardrum has perforated twice and the right eardrum has perforated once. We now see ENT weekly to have his ears suctioned and he is on long term antibiotic ear drops until tubes can be placed at the time of his palate repair.
• Hearing test December 13 2012 showed mild hearing loss in both ears. Worse on the left than the right. Fingers crossed the tube placement will help this.
• Plate surgery scheduled for January 21 2013.

So that takes us up to what is going on now. We will have loads of preadmission tests as well as regular clinics over the next 3 weeks. We are hopeful that Ashley can rearrange leave to be with us when Ben has his surgery. This brings me to my next point updates. I want to stress the following.

I will be posting on the blog as the main means of updates. We have so many family and friends and we want to thank you all for your love and support. We want to keep you all in the loop however it is hard to do so to each and everyone over the phone. We will once again be using the blog as our main means of updates. We will do our best to phone people as we can and we welcome anyone who wishes to call, email, text or whatever to do so. Please do not be offended if we do not get the chance to call. We will do our best to call as we can but depending on what else is going on it may not be easy. Also we have family that will be south, in the UK, on the other side of Canada or in the states. This means that sometimes the time difference works against us, especially when the medical staff need us at certain times for certain things. Please pass this blog along to those who may not know about it and still want updates. Please to feel free to check in here at anytime, I will also try to let you all know via facebook or twitter when an update is posted. Once again than you ALL for your thoughts, prayers, love and support. We appreciate each and everyone of you.

The link to the main page of the blog is:

http://pinkpointeshoes.blogspot.com/

feel free to share.

These next few weeks to the surgery will fly by. Lets hope the weather cooperates and that everything goes according to plan. Although if history has shown me anything it is that it  never does.

A few Christmas pictures

These are just a few (very few) pictures from Christmas day. These were taken before the kids woke up. 

The tree

Santa presents

Harry (He got his Thomas Train!!)

Benjamin

Victoria ( 1D CD and Orbeez)

Arm Immobilizers

This is a post for all the Pierre Robin Sequence parents out there as well as craniofacial parents, what arm immobilizers did you like best post surgery??

We are looking at getting some and I am so torn between the Snuggle Wraps and the Pedi Wraps. I think I am leaning more towards the Pedi Wraps but I don't know!!

Help anyone????

Merry Christmas

Too Cute for Words!

Benny Bean in a very Canadian looking hat.  I LOVE this picture!

Happy holidays from the IWK Foundation

It's a pig....I think...

 Today we made homemade play clay! A bit redundant since you don't make store bought play clay, anyways we made play clay!

The plan was to have it orange...it turned out more of a peachy pink. Harry thought it was pretty.

He made this lovely pig! He told me it has a big bottom and a small tail. You can see the tip of the little white tail in the top picture. The large white thing is a hat. (of course how silly of me!)

Not bad for a two year old (with a little help from his big sister).

All in all it was a bit messy, inexpensive but very fun!

World's Cutest Dino!

ROAR!

Thanks Granny Carole and Mike for the cool hoodie! It's awesome!

Odd...One year later...

Here we are are one year into our Pierre Robin journey. It has been...hard. I can't seem to find any other word that describes it. There is always something that is a challenge. When things seem to die down and be nice and quiet it is all shattered with something major.

Lately it has been ear infections. Perhaps it is just one ear infection that never really clears and has hung on for the last month and a half. Irregardless, Ben's left ear drum has perforated three times now. This week his right ear drum decided to perforate as well. It has meant weekly ENT visits. Dr. Hong has changed his mind (yet again) and decided tubes are in Ben's best interest. Thank goodness!!

Lynne the clinic nurse decided to talk to the craniofacial team booking clerk to make sure the palate repair (along with other things) would now include tube insertion as well.

With in a few hours of leaving I had a phone call with the OR date of January 21, 2013. Preop to be done between the 20 and prior to his 9am OR time on the 21. This means staying overnight at Ronald MacDonald house January 19 and the 20th. These are exactly the same dates that started Ben's journey to his jaw distraction. Seems more than a little coincidental.

I am a little worried about the whole thing. Apparently historically Pierre Robin Sequence kids can have a harder time than kids that just have the cleft palate. Where Ben is a corrected Pierre Robin (thanks to the mandibular distraction) this shouldn't matter. Given our luck, however, I will not hold my breath. I will try and remain positive, yet in the back of my mind I will be prepared for at least one set back along the way.

The count down is on. Exactly one year later...sigh.

IWK Health Centre Sings Jingle Bells!

Happy First Birthday Ben!

I cannot quite believe Ben is a year old! This has been a very hard year. It has had so many highs that were higher than high and lows that were lower than low. The poor little boy has over come so much in the last year, I sometimes wonder how he managed to get through it. As you can see in the pictures it hasn't been an easy road for him.

It seems we are always trading one issue for another. Appointments with one department start to slow down and others pick up and in some cases new departments all together become involved. My hope for him this year is to just have it all slow down. I just want him to have more home time and normal time than hospital time.

One year ago our lives changed. Little Ben gave us all a wake up call to what is really important and just how many things we all take for granted. As hard as it has been I wouldn't trade it for anything. He is a wonderful and very happy little boy and no matter what happens we will all figure it out together as we go along.

Fingers crossed this next year will be easier for him.


HAPPY BIRTHDAY BEN!!!! We love you!!!

Walking 2

Ben walking 1

Kids in a box

Thoughts and Prayers for my Grandmother....

Today my grandmother fell. She was walking from her kitchen to her living room, caught her toe on a stool and fell.  She scraped her left arm pretty badly and landed on her left hip. Luckily she had one of the medical pendants you wear and just have to push a button to get help. The service dispatched an ambulance for her. She was in a lot of pain and very teary when they arrived.

After getting to hospital her arm was bandaged and the X-ray of her hip showed a fracture. She was admitted to the surgical unit and will be having surgery tomorrow morning. Tonight she will be spending the night in the step down unit on surgical.

I would appreciate tremendously any positive thoughts and prayers that could be sent her way. This is a tough time for her. It was 8 years ago today my grandfather was admitted and he never made it home, passing away early in the new year. While she will be home in 5-7 days we all know this is on her mind. To be honest, at 89 years old, I think it is a worry we all have.

I hope to update this soon however it will depend on how the next few days play out. We all just have to have a little faith.

Thanks to you all for the kind thoughts and prayers, albeit in advance.

The unforgettable gift..

The unforgettable gift was a blog post today from the IWK health center foundation.

http://iwkfoundation.wordpress.com/2012/12/07/an-unforgettable-gift


This made me cry...seriously it speaks for itself.

Can you hear me now???

Today we were back at the IWK. I honestly can't handle it in there this time of year. It was cold, a few flurries in the air and the place was decorated for Christmas. It brought back a million memories from this time last year, that I have yet to deal with.

We were an add on for Dr. Hong in the ENT clinic. Ben's eardrum had gone again and was seeping nasty smelling/looking fluid. The ear drops he  has been on haven't been doing much if anything and I was concerned.

Dr. Hong was happy to see us. Ben's eardrum was indeed still open and badly infected. It needed to be cleaned and suctioned out and have the drops put in. The new plan of action seems to be back where we were and have tubes placed to be on the safe side. This will be done when we are in for the palate repair. Between now and then it will mean (at the least) weekly visits to clean and monitor his ear.

Surgery has been scheduled and will be sometime in late January or early February, with the preop before that. While this is good news that Christmas won't be an issue, the fact I will be here alone becomes a bit of one for me.

Once Ben had his ear suctioned, he was angry but far more comfortable. He even had a smile for Dr. Hong when he asked him "Can you hear me now?"

Lets hope the surgery papers are in the post soon so I can start making plans!

Nutcracker Weekend....

This was Nutcracker weekend...While the show was fantastic, I must admit I am glad it is over for now. It was a VERY long weekend. 

Friday night Victoria started feeling unwell and just before curtain Saturday night became violently ill. The poor kid was throwing up ever 10-30 minutes the entire show!

To be honest I didn't think she was going to be able to go on. She was pretty clear she was under no circumstances going home and she was going to dance.

It took some doing but we managed to get her cleaned up and with only about 1.5 minutes before her cue to dance got her in her costume. Luckily her make up for soldiers was on before she got ill so it was easy to fix up.

You can see from the picture she wasn`t feeling too well on stage. (She is the soldier on the right)

After the first dance she was pretty ill for a while. We spent quite a while outside in the bitter cold. Once she had recovered a bit, we went upstairs to have her makeup for Chinese sprayed on. Moving her head made the dizziness worse and we headed back outside. Once again we had to do the last minute costume change. We headed to makeup for a touch up of her mouth and nose area a few times. She made it on stage and did really well. She didn`t miss a cue.

On top of everything else her costume tights were too big and kept slipping way down. She felt miserable and just wanted to go home to take some travel sick medication and go to bed. She made the final curtain call and the grand finale. However she barely made it back to the dressing room. The poor kid took a long time to be able to get out to the car.

She still wasn`t feeling herself Sunday. She still felt miserable. We had given her medication but she still felt ill. She made it through the performance without being sick but she felt miserable.

Even today she didn`t feel great for school. Still I am very proud of her for dancing even though she was sick.

Good job Victoria.

Benny Bear!

Extra cute and extra warm. All ready to go out in the snow with big brother and sister.