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/

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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.